Friday, 18 February 2011
Introduction
I have been sick since May 2008 and I have found it sometimes very difficult to find out information about my conditions, in particular Pots syndrome. I have written this blog to try and help anyone who is suffering with POTS or Marfans Syndrome. By finding this blog hopefully you will find everything you need to know. I have tried to include everything that I have researched and also tried to give an account of my experience. I would emphasise that the most important thing is not to give up hope and to fight against this illness (in particular I refer to Pots). I am almost better now but I always remember to take each day as it comes and if I have a bad day then I look forward to the next good day. I really hope that this blog is of help to you!
Saturday, 6 December 2008
How Did I Recover From Pots
It is a real fight to get better but most of the time I am now. I do have the odd relapse but in the most part I lead a normal life. This is how I got better:
Medications:
Atenalol
I take paediatric Atenalol oral solution 5ml of which I take 1 ml three times a day. The key problem with POTs patients is that we do not tolerate medications very well. Whilst in hospital I was given a higher dose (an adult dose) which slowed my heart rate down too much which was dangerous. It was my suggestion to try the paediatric dose. I had to push for this whilst in hospital so be forceful when you speak to your doctor. Sometimes I can lower the dose. I have my own heart monitor and if I feel that my heart rate is going too high I sometimes just take an extra dose at the time to relive the symptoms. Everyone is different so because this oral solution is a very low dose you can play around with it to find out exactly what suits you.
Seroxat
I take 10mg of Seroxat tablets, one per day. Seroxat is an antidepressant. My cardiologist told me it is sometimes used in the tilt table tests to raise blood pressure. In my case it helped to raise my blood pressure. The dose I take is a very low dose as I could not tolerate even 20mg. I think it also helped to ease the nervous state that I was in whilst I was very sick. As it is a very low dose it does not really work as an antidepressant and it is fine to stay on this dose long term.
Alternative Medicine:
As soon as my blood pressure was high enough for me to go and see my osteopath I did so. I had seen him for many years to help with my Marfans syndrome. When he started to treat my Pots I saw him twice a week for about two months. There is a tiny bone in the neck at the front next to the main artery. He very gently worked on this bone as it helped to stabilise my blood pressure. His details are in my blog. I really do believe that this was one of the main things that started me onto the road to recovery. I now see him at six week intervals but he no longer needs to work on my neck. I really do think that it would be worth looking into this type of treatment if anyone has POTS but you must make sure you see a highly qualified osteopath like Stephen Sandler, who is renowned in his profession.
Mirena coil:
I had this fitted in April 2010. One thing that I noticed was that my symptoms were always worse during menstruation. I had a test to check my hormone levels and this showed I was entering into my menopause. The coil has helped so much. I have my own theory that POTs can be caused by hormones. Women that suffer from POTs seem to be teenagers, pregnant women or women who have recently had children or in their mid-forties. This is just my theory and I cannot explain why men and boys also get POTs but perhaps hormones play a big part for them too.
Stress:
I think stress played a huge part in me becoming I'll. It was almost like a good old fashioned nervous breakdown. I now believe that I have always had POTs. As a young child I used to faint if I had to stand in the school play or as a teenager I used to faint if I had to stand in the pub but because I was so active and exercised all the time I think that my symptoms were kept at bay. I am sure that stress caused my body to almost give up in May 08. My Father had passed away and my Mother was taken into hospital with a heart block. I was manic at work and had a family and home to look after. I think finally all the stress got to me. After being in and out of hospital for a year and in a wheelchair my GP suggested that I see a Psychiatrist in 2009. He prescribed the Seroxat and said that he was sure it would help me to get better as it also raises blood pressure. He also recommended that I have some therapy to help me deal with the Pots. The seroxat really did help as did the treatment with a therapist which included EMDR (rapid eye movement therapy, usually used for trauma patients). My therapist also recommended that I try Mindfulness treatment.
Exercise:
Exercise is the main key to getting better. I know it sounds silly when you can't even get out of bed but it is so important to build up the legs to help pump the blood round the body and stop it from pooling. Whilst I was in hospital I started to raise my legs and pedal in the air as if I were riding a bike. I could hardly do this at first but you have to keep trying as it is the key to getting better. When I came out of hospital I got a recling exercise bike and gradually built up every day. I also got a wheelchair. Getting house bound is the worst things that can happen. You get scared to go out in the end. At least if you have the wheelchair you can go to the shops (standing in line was impossible, and still is a problem for me even now) or be taken for a walk and get out now and then and try to walk yourself. With the wheelchair my mother took me out every day and I would try and walk pushing the chair. When I got too tired I would get in the chair and she would push me again. I would gradually build up every day. I make sure I walk for half an hour every day now and I speed walk (so there is hope I promise). I also swim. You must build up your leg muscles to help pump the blood round the body and stop blood pooling. I also used to put on music and dance around to build up my stamina. It nearly killed me at first but you have to be strong and don’t give up. Even now, first thing in the morning, my heart races. I take my medications and keep moving around. I climb the stairs a few times to get the circulation going and make sure I keep moving around. It is sometimes hard not to go back to bed but I make sure I avoid this at all costs.
Low GI Index Foods:
I have mentioned these in my blog. I stick as much as I can to this diet and I eat little and often. I can eat big meals now but my heart does race when I do this. Avoid garlic at all costs as this lowers the blood pressure.
High salt intake:
I eat boiled eggs now in the morning as I can add a lot of salt. I eat soup at lunch time and add salt. Then add lots of salt to my evening meal. I could not take sodium tablet as I could not swallow them. I do not measure what salt I take but I just add plenty to my food. I think sometimes it makes things worse to over analyse what we are doing as this adds to the stress and makes the Pots worse.
Drinking lots of fluids:
As well as drinking water I drink organic tea. I did stop caffeine when I first became ill but I have found tea does not make me urinate so much. I therefore retain the salt I need to increase the blood volume. This may work for you. I found coffee gave me an irregular heartbeat. Caffeine does raise the blood pressure so experiment.
Blood pressure machine:
I do not use this very much now. However, when I was really sick I found it was helpful to take my blood pressure. This would stop the panic attacks because I could see exactly what my blood pressure was. It stopped my imagination running wild.
Smoking:
Now this is controversial. I do not recommend this to anyone. I have smoked since I was 15. I mentioned earlier that I believe that I have had Pots since childhood and maybe because I smoked at such an early age this helped to keep my Pots symptoms at bay. I was forced to stop smoking as I was in hospital for my POTs in May 08 and started again in April 09 when my husband left me. As soon as I started to smoke my symptoms improved. My cardiologist is aware of this. He said that smoking does raise the blood pressure. I know all of the reasons why I should quit but it got me out of the wheelchair so it, for me, is a case of quality of life. I am going to try and quit again but must admit am scared to. Watch this space.
Change in life style:
My husband left because he could not cope with the POTs in April 09. I know realise he was a cause of much stress to me and maybe living with him made my symptoms worse. Another big cause of stress to me was work. I was pensioned off for ill health in July 09 as I could no longer work. I was very lucky that my company kept my job open all the time I was in hospital and I worked from home when I was able to but finally it was agreed that it was going to be impossible for me to return. I am very fortunate that I worked for 26 years so I have a pension to fall back on. I do not know what would have happened to me if I did not have this.
Get Your Kidneys Checked:
A doctor mentioned to me that there is a theory that damage to the kidneys by antibiotics in childhood could be a cause of POTs. My kidneys are slightly damaged and I only recently found this out.
Raise Your Bed Under Your Head:
My Professor told me to do this with either bricks or pillows which I did. It helps to stop your heart racing at night. I used to sometimes wake up at night trying to catch my breath. It was awful, like I had stopped breathing or had died. This did help. Also taking the Seroxat really did help as my panic attacks started to stop. I used to have very vivid dreams and I think I used to panic in my sleep.
Living with Pots is not easy. In the most part I live a normal life now. I still sometimes have bad days but I find that I just must not give into my symptoms. It is all trial and error but never give up hope. You can get better. Please read through my blog and I really do hope that you find the information in it of use to you. I mostly wrote this when I was very sick and I pray that all my hard work and efforts at the time of being so sick will help others. Pots is an awful condition but you can beat it. Good luck.
Lynne
Medications:
Atenalol
I take paediatric Atenalol oral solution 5ml of which I take 1 ml three times a day. The key problem with POTs patients is that we do not tolerate medications very well. Whilst in hospital I was given a higher dose (an adult dose) which slowed my heart rate down too much which was dangerous. It was my suggestion to try the paediatric dose. I had to push for this whilst in hospital so be forceful when you speak to your doctor. Sometimes I can lower the dose. I have my own heart monitor and if I feel that my heart rate is going too high I sometimes just take an extra dose at the time to relive the symptoms. Everyone is different so because this oral solution is a very low dose you can play around with it to find out exactly what suits you.
Seroxat
I take 10mg of Seroxat tablets, one per day. Seroxat is an antidepressant. My cardiologist told me it is sometimes used in the tilt table tests to raise blood pressure. In my case it helped to raise my blood pressure. The dose I take is a very low dose as I could not tolerate even 20mg. I think it also helped to ease the nervous state that I was in whilst I was very sick. As it is a very low dose it does not really work as an antidepressant and it is fine to stay on this dose long term.
Alternative Medicine:
As soon as my blood pressure was high enough for me to go and see my osteopath I did so. I had seen him for many years to help with my Marfans syndrome. When he started to treat my Pots I saw him twice a week for about two months. There is a tiny bone in the neck at the front next to the main artery. He very gently worked on this bone as it helped to stabilise my blood pressure. His details are in my blog. I really do believe that this was one of the main things that started me onto the road to recovery. I now see him at six week intervals but he no longer needs to work on my neck. I really do think that it would be worth looking into this type of treatment if anyone has POTS but you must make sure you see a highly qualified osteopath like Stephen Sandler, who is renowned in his profession.
Mirena coil:
I had this fitted in April 2010. One thing that I noticed was that my symptoms were always worse during menstruation. I had a test to check my hormone levels and this showed I was entering into my menopause. The coil has helped so much. I have my own theory that POTs can be caused by hormones. Women that suffer from POTs seem to be teenagers, pregnant women or women who have recently had children or in their mid-forties. This is just my theory and I cannot explain why men and boys also get POTs but perhaps hormones play a big part for them too.
Stress:
I think stress played a huge part in me becoming I'll. It was almost like a good old fashioned nervous breakdown. I now believe that I have always had POTs. As a young child I used to faint if I had to stand in the school play or as a teenager I used to faint if I had to stand in the pub but because I was so active and exercised all the time I think that my symptoms were kept at bay. I am sure that stress caused my body to almost give up in May 08. My Father had passed away and my Mother was taken into hospital with a heart block. I was manic at work and had a family and home to look after. I think finally all the stress got to me. After being in and out of hospital for a year and in a wheelchair my GP suggested that I see a Psychiatrist in 2009. He prescribed the Seroxat and said that he was sure it would help me to get better as it also raises blood pressure. He also recommended that I have some therapy to help me deal with the Pots. The seroxat really did help as did the treatment with a therapist which included EMDR (rapid eye movement therapy, usually used for trauma patients). My therapist also recommended that I try Mindfulness treatment.
Exercise:
Exercise is the main key to getting better. I know it sounds silly when you can't even get out of bed but it is so important to build up the legs to help pump the blood round the body and stop it from pooling. Whilst I was in hospital I started to raise my legs and pedal in the air as if I were riding a bike. I could hardly do this at first but you have to keep trying as it is the key to getting better. When I came out of hospital I got a recling exercise bike and gradually built up every day. I also got a wheelchair. Getting house bound is the worst things that can happen. You get scared to go out in the end. At least if you have the wheelchair you can go to the shops (standing in line was impossible, and still is a problem for me even now) or be taken for a walk and get out now and then and try to walk yourself. With the wheelchair my mother took me out every day and I would try and walk pushing the chair. When I got too tired I would get in the chair and she would push me again. I would gradually build up every day. I make sure I walk for half an hour every day now and I speed walk (so there is hope I promise). I also swim. You must build up your leg muscles to help pump the blood round the body and stop blood pooling. I also used to put on music and dance around to build up my stamina. It nearly killed me at first but you have to be strong and don’t give up. Even now, first thing in the morning, my heart races. I take my medications and keep moving around. I climb the stairs a few times to get the circulation going and make sure I keep moving around. It is sometimes hard not to go back to bed but I make sure I avoid this at all costs.
Low GI Index Foods:
I have mentioned these in my blog. I stick as much as I can to this diet and I eat little and often. I can eat big meals now but my heart does race when I do this. Avoid garlic at all costs as this lowers the blood pressure.
High salt intake:
I eat boiled eggs now in the morning as I can add a lot of salt. I eat soup at lunch time and add salt. Then add lots of salt to my evening meal. I could not take sodium tablet as I could not swallow them. I do not measure what salt I take but I just add plenty to my food. I think sometimes it makes things worse to over analyse what we are doing as this adds to the stress and makes the Pots worse.
Drinking lots of fluids:
As well as drinking water I drink organic tea. I did stop caffeine when I first became ill but I have found tea does not make me urinate so much. I therefore retain the salt I need to increase the blood volume. This may work for you. I found coffee gave me an irregular heartbeat. Caffeine does raise the blood pressure so experiment.
Blood pressure machine:
I do not use this very much now. However, when I was really sick I found it was helpful to take my blood pressure. This would stop the panic attacks because I could see exactly what my blood pressure was. It stopped my imagination running wild.
Smoking:
Now this is controversial. I do not recommend this to anyone. I have smoked since I was 15. I mentioned earlier that I believe that I have had Pots since childhood and maybe because I smoked at such an early age this helped to keep my Pots symptoms at bay. I was forced to stop smoking as I was in hospital for my POTs in May 08 and started again in April 09 when my husband left me. As soon as I started to smoke my symptoms improved. My cardiologist is aware of this. He said that smoking does raise the blood pressure. I know all of the reasons why I should quit but it got me out of the wheelchair so it, for me, is a case of quality of life. I am going to try and quit again but must admit am scared to. Watch this space.
Change in life style:
My husband left because he could not cope with the POTs in April 09. I know realise he was a cause of much stress to me and maybe living with him made my symptoms worse. Another big cause of stress to me was work. I was pensioned off for ill health in July 09 as I could no longer work. I was very lucky that my company kept my job open all the time I was in hospital and I worked from home when I was able to but finally it was agreed that it was going to be impossible for me to return. I am very fortunate that I worked for 26 years so I have a pension to fall back on. I do not know what would have happened to me if I did not have this.
Get Your Kidneys Checked:
A doctor mentioned to me that there is a theory that damage to the kidneys by antibiotics in childhood could be a cause of POTs. My kidneys are slightly damaged and I only recently found this out.
Raise Your Bed Under Your Head:
My Professor told me to do this with either bricks or pillows which I did. It helps to stop your heart racing at night. I used to sometimes wake up at night trying to catch my breath. It was awful, like I had stopped breathing or had died. This did help. Also taking the Seroxat really did help as my panic attacks started to stop. I used to have very vivid dreams and I think I used to panic in my sleep.
Living with Pots is not easy. In the most part I live a normal life now. I still sometimes have bad days but I find that I just must not give into my symptoms. It is all trial and error but never give up hope. You can get better. Please read through my blog and I really do hope that you find the information in it of use to you. I mostly wrote this when I was very sick and I pray that all my hard work and efforts at the time of being so sick will help others. Pots is an awful condition but you can beat it. Good luck.
Lynne
Update On Treatment 6th December
It is exactly a month do the day since I was discharged from hospital. The change in me is incredible I think. I have been doing everything that I said I would in the November update on treatment and I can hardly believe how much better I feel now.
I think that the most important thing is to STAY OUT OF BED!!!
I still really struggle with the fatigue first thing in the morning and really struggle to get out of bed but I force myself and that is the best thing to do. If I stay in bed then my symptoms get worse.
My Routine
My routine now is that I get up and immediately put on my support tights (I have also started to wear support knickers to help with the blood pooling in my stomach).
I then take my atenolol. The medication does take about an hour to start working properly but even although my heart is racing (especially if I need to walk upstairs) I need to start to exercise to get my circulation going. I therefore go downstairs and get on my exercise bike for ten minutes.
I then have my scrambled eggs with lots of salt and a pint of water to keep me hydrated (I am still eating little and often and sticking to eating GI foods).
I am very fortunate in that my work have allowed me to work form home part time. I did not ever think I would be fit enough to work again but I now can sit and work on the pc for 3.5 hours in the morning which has made me feel so much better in myself. I plan to really build myself up so that I can try and attempt to go back to working in the office mid January. This does seem a little ambitious but I am on half pay now and need to meet my mortgage. Still it gives me the strength to fight back and get fit again.
Mid morning have a bowl of soup with lots of salt in it. This means that by this time of the day I have lots of salt in my system and this seems to really help. I did not get on with the salt tablets. One of the problems I found with POTS is that I can not swallow large pieces of food and I am dreadful taking tablets. I could not swallow the salt tablets as they were too big.
I go for a fairly brisk walk in the afternoon for at least thirty minutes.
I now only usually need to take my atenolol once in the afternoon now but sometimes I need to take it a third time. I am beginning to know when I need to take it now without taking my blood pressure.
I have also bought some great dance cd’s and started to dance at home to exercise in the early evening. At first I found this really hard but I now can dance for about fifteen minutes at a time. This is a fantastic way of building me up and as I really enjoy dancing it seems to boost my moral.
Additional Information
I still have to use my wheelchair if I go to the supermarket because I can not stand in line for long. I do feel that it was the best thing that I ever bought as it has enabled me to have the courage to go out again and thus build up my stamina. I can now walk round local smaller shops and I find as long as I keep moving I do not have a problem with my heart racing. I am also fine in the car now (before I felt so ill in the car, it was like sea sickness).
One great thing I have noticed is that my blood pressure does seem to have gone up and I think that this is maybe why I am feeling much better. I do think that the support tights and exercise with regular intakes of salt are mainly responsible for this fantastic improvement.
I am now fit enough to be able to have treatment by my osteopath Stephen Sandler stephen@chingfordosteopathy.co.uk My first treatment was on 1st December and I am convinced that already he is helping me to get better.
Test Results
I have said that I feel it is important for me to stay out of hospital to get better but this is only because of the amount of time spent in bed whilst in hospital. I can not stress however the importance of staying in hospital if you are unwell and do need to undergo all the relevant tests required. Without these tests it is not possible to get a proper diagnosis and if you have not been properly diagnosed then it is not possible get the appropriate treatment.
For my part I have now been diagnosed with both Marfans and POTS. I am very fortunate in that my autonomic system is not too badly damaged and most of the extensive tests that I had came back normal. However the tests that confirmed POTS were tilt table tests, a twenty four hour ambulatory blood pressure and heart rate profile. An autonomic food challenge test showed that my blood pressure was lower on postural change post meal. The autonomic exercise challenge test showed there was an appropriate rise in blood pressure and heart rate. However post exercise, even fifteen minutes later my heart rate was elevated and was greater than on standing pre exercise, as apparently often is observed in POTS. I do not appear to sweat but did not want to take the sweat challenge test so instead a sympathetic skin response study was performed which showed preserved responses in the upper limbs but absent responses in the lower limbs. The only other test that I had which showed a slight abnormality was a twenty four hour urine collection which showed that there was slightly too much calcium in the urine.
It is so important to get all the scientific facts right and now that I have my test results I know that it is safe and very important for me to resume exercising regularly but on a graded basis. I also have been advised not to do anything too strenuous after eating a meal as my blood pressure could drop. Armed with this information I can gradually try and adapt my life and try to get back to normal again.
Now that I have had time to reflect I really do think hat I have had POTS all my life but because I have lead such a busy life (I used to get up at 5am and not stop rushing around all day and only sit down for an hour in the evening at 10am before going to bed) the symptoms have been suppressed. I think stress (my mother was very ill and rushed into hospital and I had a lot of stress at work) was what started my symptoms and because I was so sick I could then not get out of bed as I was hospitalised. Catch twenty two. Bed and rest appear to be bad for me. I conclude that iff I keep on the move I am better.
I think that the most important thing is to STAY OUT OF BED!!!
I still really struggle with the fatigue first thing in the morning and really struggle to get out of bed but I force myself and that is the best thing to do. If I stay in bed then my symptoms get worse.
My Routine
My routine now is that I get up and immediately put on my support tights (I have also started to wear support knickers to help with the blood pooling in my stomach).
I then take my atenolol. The medication does take about an hour to start working properly but even although my heart is racing (especially if I need to walk upstairs) I need to start to exercise to get my circulation going. I therefore go downstairs and get on my exercise bike for ten minutes.
I then have my scrambled eggs with lots of salt and a pint of water to keep me hydrated (I am still eating little and often and sticking to eating GI foods).
I am very fortunate in that my work have allowed me to work form home part time. I did not ever think I would be fit enough to work again but I now can sit and work on the pc for 3.5 hours in the morning which has made me feel so much better in myself. I plan to really build myself up so that I can try and attempt to go back to working in the office mid January. This does seem a little ambitious but I am on half pay now and need to meet my mortgage. Still it gives me the strength to fight back and get fit again.
Mid morning have a bowl of soup with lots of salt in it. This means that by this time of the day I have lots of salt in my system and this seems to really help. I did not get on with the salt tablets. One of the problems I found with POTS is that I can not swallow large pieces of food and I am dreadful taking tablets. I could not swallow the salt tablets as they were too big.
I go for a fairly brisk walk in the afternoon for at least thirty minutes.
I now only usually need to take my atenolol once in the afternoon now but sometimes I need to take it a third time. I am beginning to know when I need to take it now without taking my blood pressure.
I have also bought some great dance cd’s and started to dance at home to exercise in the early evening. At first I found this really hard but I now can dance for about fifteen minutes at a time. This is a fantastic way of building me up and as I really enjoy dancing it seems to boost my moral.
Additional Information
I still have to use my wheelchair if I go to the supermarket because I can not stand in line for long. I do feel that it was the best thing that I ever bought as it has enabled me to have the courage to go out again and thus build up my stamina. I can now walk round local smaller shops and I find as long as I keep moving I do not have a problem with my heart racing. I am also fine in the car now (before I felt so ill in the car, it was like sea sickness).
One great thing I have noticed is that my blood pressure does seem to have gone up and I think that this is maybe why I am feeling much better. I do think that the support tights and exercise with regular intakes of salt are mainly responsible for this fantastic improvement.
I am now fit enough to be able to have treatment by my osteopath Stephen Sandler stephen@chingfordosteopathy.co.uk My first treatment was on 1st December and I am convinced that already he is helping me to get better.
Test Results
I have said that I feel it is important for me to stay out of hospital to get better but this is only because of the amount of time spent in bed whilst in hospital. I can not stress however the importance of staying in hospital if you are unwell and do need to undergo all the relevant tests required. Without these tests it is not possible to get a proper diagnosis and if you have not been properly diagnosed then it is not possible get the appropriate treatment.
For my part I have now been diagnosed with both Marfans and POTS. I am very fortunate in that my autonomic system is not too badly damaged and most of the extensive tests that I had came back normal. However the tests that confirmed POTS were tilt table tests, a twenty four hour ambulatory blood pressure and heart rate profile. An autonomic food challenge test showed that my blood pressure was lower on postural change post meal. The autonomic exercise challenge test showed there was an appropriate rise in blood pressure and heart rate. However post exercise, even fifteen minutes later my heart rate was elevated and was greater than on standing pre exercise, as apparently often is observed in POTS. I do not appear to sweat but did not want to take the sweat challenge test so instead a sympathetic skin response study was performed which showed preserved responses in the upper limbs but absent responses in the lower limbs. The only other test that I had which showed a slight abnormality was a twenty four hour urine collection which showed that there was slightly too much calcium in the urine.
It is so important to get all the scientific facts right and now that I have my test results I know that it is safe and very important for me to resume exercising regularly but on a graded basis. I also have been advised not to do anything too strenuous after eating a meal as my blood pressure could drop. Armed with this information I can gradually try and adapt my life and try to get back to normal again.
Now that I have had time to reflect I really do think hat I have had POTS all my life but because I have lead such a busy life (I used to get up at 5am and not stop rushing around all day and only sit down for an hour in the evening at 10am before going to bed) the symptoms have been suppressed. I think stress (my mother was very ill and rushed into hospital and I had a lot of stress at work) was what started my symptoms and because I was so sick I could then not get out of bed as I was hospitalised. Catch twenty two. Bed and rest appear to be bad for me. I conclude that iff I keep on the move I am better.
Monday, 17 November 2008
Update On Treatment 17th November 2008
On 29th October I went into the National Hospital for Neurology and Neurosurgery for more autonomic tests. I have not had the results yet. I was also started a trial of the medication Midrodine which I took up until 12th November. However, I had to stop taking this medication. I felt terrible on it. I was only taking 1.25mg but it made me really depressed, I had chronic pains in my stomach, I could not concentrate and I felt really tired all the time (more so than usual). On 29th October I had stopped taking the fludrocortisone to trial the Midrodine. I think being in hospital again made me worse as I was in bed again for most of the day. Everything I have read from other patients that have POTS seems to indicate that exercise is the best thing to elevate the symptoms of POTS. Therefore I ordered an exercise bike (one that I could sit down on with my legs in front of me) for details see link
http://www.argos.co.uk/static/Product/partNumber/3354492/Trail/searchtext%3EEXERCISE+BIKE.htm
On Thursday 13th November I decided to do the following and stick to it if possible to give my body the chance to recover and possibly heal itself.
Stay out of hospital if possible. I think the key to recovery is to be as active as possible. If you spend lots of time in bed this makes the symptoms worse. It is a catch 22 really because with the fatigue it is really hard to move around but it really is essential. If you are in hospital make sure you do lots of leg exercises to keep the circulation going. These can be done laying down as I have mentioned in the blog below.
Exercise on my bike every hour if possible for a few minutes.
Eat frequently (every three hours if possible) and follow the GI diet as detailed in my blog below.
Increase my salt (I have just ordered some tablets). I have found scrambled egg is a good food to add lots of salt to and also soups but I might take one tablet at night to stop me waking up during the night and being dehydrated.
I have ordered some Nuun tablets because I found them on another POTS website and I believe they help with dehydration.
http://nuun.urbanadventuregear.com/p13/What-is-Nuun/pages.html?gclid=CIyCnO2N_JYCFQ6R1QodA2PUYg
Drink plenty of water to stay hydrated.
Go for a walk every day to try and build up my stamina (I now have a wheelchair which I take out with me and I push it. If I feel my heart starting to race I can then get in it and someone will push me home as I am not yet going out on my own. I have found that getting the wheelchair is the best thing I could have done as it is helping to boost my confidence. Hopefully soon I will not need it but there is nothing wrong with admitting that I have a chronic illness and that I need tall the help I can get. I think facing up to this is one of the biggest hurdles to overcome.
Wear my TED stockings http://www.activahosiery.com/howactivaworks.asp
Take my paediatric Atenolol (the dose that seems to suit me is 5ml at 7am, 12 noon and 5pm)..
I can not believe the change in me even since last Thursday. My heart rate has dropped and my blood pressure has increased slightly. I nearly feel like my old self again and as I am starting to work from home today I think that this recovery is just in the nick of time. I am praying that it will continue and eventually I will be able to get back into the office. Watch this space!
http://www.argos.co.uk/static/Product/partNumber/3354492/Trail/searchtext%3EEXERCISE+BIKE.htm
On Thursday 13th November I decided to do the following and stick to it if possible to give my body the chance to recover and possibly heal itself.
Stay out of hospital if possible. I think the key to recovery is to be as active as possible. If you spend lots of time in bed this makes the symptoms worse. It is a catch 22 really because with the fatigue it is really hard to move around but it really is essential. If you are in hospital make sure you do lots of leg exercises to keep the circulation going. These can be done laying down as I have mentioned in the blog below.
Exercise on my bike every hour if possible for a few minutes.
Eat frequently (every three hours if possible) and follow the GI diet as detailed in my blog below.
Increase my salt (I have just ordered some tablets). I have found scrambled egg is a good food to add lots of salt to and also soups but I might take one tablet at night to stop me waking up during the night and being dehydrated.
I have ordered some Nuun tablets because I found them on another POTS website and I believe they help with dehydration.
http://nuun.urbanadventuregear.com/p13/What-is-Nuun/pages.html?gclid=CIyCnO2N_JYCFQ6R1QodA2PUYg
Drink plenty of water to stay hydrated.
Go for a walk every day to try and build up my stamina (I now have a wheelchair which I take out with me and I push it. If I feel my heart starting to race I can then get in it and someone will push me home as I am not yet going out on my own. I have found that getting the wheelchair is the best thing I could have done as it is helping to boost my confidence. Hopefully soon I will not need it but there is nothing wrong with admitting that I have a chronic illness and that I need tall the help I can get. I think facing up to this is one of the biggest hurdles to overcome.
Wear my TED stockings http://www.activahosiery.com/howactivaworks.asp
Take my paediatric Atenolol (the dose that seems to suit me is 5ml at 7am, 12 noon and 5pm)..
I can not believe the change in me even since last Thursday. My heart rate has dropped and my blood pressure has increased slightly. I nearly feel like my old self again and as I am starting to work from home today I think that this recovery is just in the nick of time. I am praying that it will continue and eventually I will be able to get back into the office. Watch this space!
Monday, 13 October 2008
Marfans syndrome
Marfan syndrome is a genetic condition which affects the body's connective tissues. The connective tissues help to provide support and structure to other tissue and organs. Marfan syndrome can affect the connective tissues in many different areas of your body, such as your blood vessels, skeleton, and eyes.
Symptoms of Marfans Syndrome
The symptoms of Marfan syndrome vary from person to person. Some people are only mildly affected, while others develop more serious symptoms. Marfan syndrome is hereditary, which means that it is passed on to you from your parents. If you have Marfan syndrome, your child has a 50% chance of developing the condition.
Marfan syndrome is a relatively rare condition. Approximately 1 in 5,000 people have the syndrome. Men and women are equally affected. Although rare, Marfan syndrome is the most common connective tissue disorder
As Marfan syndrome can affect your heart and blood vessels, it is a potentially serious condition. Although there is currently no cure for Marfan syndrome, treatments are available which can help to effectively manage your symptoms, greatly improving your prognosis and life expectancy.
Features Of Marfans Syndrome
Outwardly, sufferers are usually tall and thin with disproportionately long limbs. Indeed, their arms are often 10% longer than they should be. They may be scoliolitic (have a sideways twist of the spine) or kyphotic (hump-backed) and have a pigeon or stove chest. Their joint hypermobility could be such that sufferers can bend their thumbs back to touch their forearms, and their fingers back at 90 degrees, without discomfort.
Sufferers are often very myopic (short-sighted) and some have dislocation of the lens and detachment of the retina. Marfan patients may also suffer from overcrowded teeth and a high, arched palate.
The major problems affecting a person with Marfan's Syndrome are linked to the heart and major blood vessels. The aorta - the large artery carrying blood away from the heart, may become dilated. Usually the ascending aorta - the section directly after it leaves the heart - is at risk, but it can also occur further down the vessel where it leads to the abdomen and lower body. The danger with this is that a swollen area, known as an aneurysm, could eventually burst. The aorta itself is made up of two layers of tissue. These can be torn apart - a disastrous and life-threatening event, known as a dissection. Indeed, aortic dissection is the most common cause of death in Marfan patients today. This can often be prevented if it is known to be a risk factor by reinforcement with an artificial structure made from titanium.
The aortic and mitral valves of the heart can also be affected. Situated on the left side of the heart, these may become 'incompetent' and let blood through when they are closed. This means that the heart can't pump as much blood as is needed and eventually a mechanical valve may be necessary.
Diagnosis Of Marfans Syndrome
Generally, Marfan Syndrome is diagnosed after a careful physical examination focussing particularly on the the eyes, skeletal and cardiovascular systems.
Suspected Marfanoid patients can also be monitored by Echocardiogram (a sound-wave picture of the heart) for early signs of aneurysm or mitral valve prolapse (the valves can become floppy).
The affected gene, FBN1, was discovered in 1990 and the protein it codes for (fibrillin) was discovered the following year. This knowledge should help develop a more accurate diagnostic test which could be applied at a much earlier stage. Mutations in the FBN1 gene can be detected in 80% of patients, thus enabling family members to be screened. Diagnosis can then be confirmed by genetic linkage studies.
Effects on Lifestyle
Stretchy connective tissue means that the aorta is not as strong as it should be, and is thus prone to tearing. Consequently a Marfan's person needs to avoid strenuous exercise and stress, or anything that would put the heart under excessive load. Nevertheless, a person with Marfan Syndrome still needs to be physically fit in order to maintain muscle tone, as well as ensuring the effective functioning of the heart and blood vessels. Hence golf, fishing, walking and non-competitive cycling would be ideal activities. Contact sports such as basketball and rugby are probably best avoided.
Dietary Considerations
Although no special diet is required, it would be prudent for the Marfan patient to choose their food wisely to ensure a balanced diet, rich in vitamins and minerals, particularly copper, which encourage the production of connective tissue.
For sources of copper see Copper
Treatment
It used to be the case that Marfan's people died early of heart failure, but with modern drugs (ie, beta-blockers) and surgical intervention, longevity is now possible. Beta-blockers have been shown to slow the dilation of the aortic root.
Physiotherapy, attendance at pain clinics and bracing to stabilise curvature of the spine may be helpful with the skeletal effects. Lace-up shoes with ankle support, together with shoe inserts, may be helpful for weak ankles.
Spectacles or contact lenses may be prescribed to try and improve or correct visual defects; and surgery can replace ocular lenses and re-attach retinas.
Approximately 10% of Marfan patients suffer spontaneous pneumothorax (collapse of the lungs) and this requires hospital treatment.
My Profile
I am now forty three years old. I was diagnosed with Marfans Syndrome when I was a year and a half old. The main symptom that I suffer with is that I am partially sighted. I also am very tall and my joints are very flexible. I have had echocardiogram’s every two years but have not experienced any problems with my heart. I have experience some problems with my back and this has been greatly helped by my excellent osteopath Sephen Sandler who is renowned in his profession and who can be contacted on pager number 07659 59 3509 or e-mail address stephen@chingfordosteopathy.co.uk
I suggest that if you are very tall and that your arms are very long (usually Marfans patients arm span is longer than their height) I would suggest that you have a word with your GP as you may have Marfans.
Symptoms of Marfans Syndrome
The symptoms of Marfan syndrome vary from person to person. Some people are only mildly affected, while others develop more serious symptoms. Marfan syndrome is hereditary, which means that it is passed on to you from your parents. If you have Marfan syndrome, your child has a 50% chance of developing the condition.
Marfan syndrome is a relatively rare condition. Approximately 1 in 5,000 people have the syndrome. Men and women are equally affected. Although rare, Marfan syndrome is the most common connective tissue disorder
As Marfan syndrome can affect your heart and blood vessels, it is a potentially serious condition. Although there is currently no cure for Marfan syndrome, treatments are available which can help to effectively manage your symptoms, greatly improving your prognosis and life expectancy.
Features Of Marfans Syndrome
Outwardly, sufferers are usually tall and thin with disproportionately long limbs. Indeed, their arms are often 10% longer than they should be. They may be scoliolitic (have a sideways twist of the spine) or kyphotic (hump-backed) and have a pigeon or stove chest. Their joint hypermobility could be such that sufferers can bend their thumbs back to touch their forearms, and their fingers back at 90 degrees, without discomfort.
Sufferers are often very myopic (short-sighted) and some have dislocation of the lens and detachment of the retina. Marfan patients may also suffer from overcrowded teeth and a high, arched palate.
The major problems affecting a person with Marfan's Syndrome are linked to the heart and major blood vessels. The aorta - the large artery carrying blood away from the heart, may become dilated. Usually the ascending aorta - the section directly after it leaves the heart - is at risk, but it can also occur further down the vessel where it leads to the abdomen and lower body. The danger with this is that a swollen area, known as an aneurysm, could eventually burst. The aorta itself is made up of two layers of tissue. These can be torn apart - a disastrous and life-threatening event, known as a dissection. Indeed, aortic dissection is the most common cause of death in Marfan patients today. This can often be prevented if it is known to be a risk factor by reinforcement with an artificial structure made from titanium.
The aortic and mitral valves of the heart can also be affected. Situated on the left side of the heart, these may become 'incompetent' and let blood through when they are closed. This means that the heart can't pump as much blood as is needed and eventually a mechanical valve may be necessary.
Diagnosis Of Marfans Syndrome
Generally, Marfan Syndrome is diagnosed after a careful physical examination focussing particularly on the the eyes, skeletal and cardiovascular systems.
Suspected Marfanoid patients can also be monitored by Echocardiogram (a sound-wave picture of the heart) for early signs of aneurysm or mitral valve prolapse (the valves can become floppy).
The affected gene, FBN1, was discovered in 1990 and the protein it codes for (fibrillin) was discovered the following year. This knowledge should help develop a more accurate diagnostic test which could be applied at a much earlier stage. Mutations in the FBN1 gene can be detected in 80% of patients, thus enabling family members to be screened. Diagnosis can then be confirmed by genetic linkage studies.
Effects on Lifestyle
Stretchy connective tissue means that the aorta is not as strong as it should be, and is thus prone to tearing. Consequently a Marfan's person needs to avoid strenuous exercise and stress, or anything that would put the heart under excessive load. Nevertheless, a person with Marfan Syndrome still needs to be physically fit in order to maintain muscle tone, as well as ensuring the effective functioning of the heart and blood vessels. Hence golf, fishing, walking and non-competitive cycling would be ideal activities. Contact sports such as basketball and rugby are probably best avoided.
Dietary Considerations
Although no special diet is required, it would be prudent for the Marfan patient to choose their food wisely to ensure a balanced diet, rich in vitamins and minerals, particularly copper, which encourage the production of connective tissue.
For sources of copper see Copper
Treatment
It used to be the case that Marfan's people died early of heart failure, but with modern drugs (ie, beta-blockers) and surgical intervention, longevity is now possible. Beta-blockers have been shown to slow the dilation of the aortic root.
Physiotherapy, attendance at pain clinics and bracing to stabilise curvature of the spine may be helpful with the skeletal effects. Lace-up shoes with ankle support, together with shoe inserts, may be helpful for weak ankles.
Spectacles or contact lenses may be prescribed to try and improve or correct visual defects; and surgery can replace ocular lenses and re-attach retinas.
Approximately 10% of Marfan patients suffer spontaneous pneumothorax (collapse of the lungs) and this requires hospital treatment.
My Profile
I am now forty three years old. I was diagnosed with Marfans Syndrome when I was a year and a half old. The main symptom that I suffer with is that I am partially sighted. I also am very tall and my joints are very flexible. I have had echocardiogram’s every two years but have not experienced any problems with my heart. I have experience some problems with my back and this has been greatly helped by my excellent osteopath Sephen Sandler who is renowned in his profession and who can be contacted on pager number 07659 59 3509 or e-mail address stephen@chingfordosteopathy.co.uk
I suggest that if you are very tall and that your arms are very long (usually Marfans patients arm span is longer than their height) I would suggest that you have a word with your GP as you may have Marfans.
Sunday, 12 October 2008
POT's Syndrome
POT's syndrome is where the blood pools http://heartdisease.about.com/cs/arrhythmias/a/Syncope2_2.htm in the legs and as a result of this the heart rate increases upon standing by over 30 beats per minute (usually within ten minutes). Patients very often go into tachycardia http://www.healthscout.com/ency/68/729/main.html and quite often pass out.
In May 2008 I was sitting on the train travelling into London to work. The train was very crowded and suddenly I felt my heart rate going very fast and I had to get off the train. I had been experiencing a lot of stress at both home and work and I just thought that it was a bit of a panic attack. I went straight home but had to immediately call an ambulance as my pulse was racing. Apparently it was 200 beats per minute. I was admitted into hospital. I was lying on the stretcher for about an hour and by the time the nurse did the ECG my pulse had gone back to normal. I was dismissed from the hospital and given a beta blocker. This made my symptoms much worse and the following week I was admitted by ambulance again into hospital.
As I already had Marfans Syndrome the focus was on this condition. I had a CAT scan and various blood tests the results of which were all normal. I was hooked up to a heart monitor and I began to notice that if I stood up from either a lying or sitting position that my pulse would rise to 150 beats per minute. I informed my consultant of this and he carried out a standing ECG which showed the symptoms of tachycardia. I was released from hospital but needed further investigations. These included a tilt table test, various urine collection tests, numerious blood tests, tests on the adrenal gland, MRI scan, heart and blood pressure monitor tests and autonomic function test. All tests came back normal apart from the tilt table test and the heart monitor tests. I had to be admitted another two times into hospital as I was very unwell.
I have been more or less bed bound now since May as the doctors are finding it hard to give me suitable medications. I have researched POTS now and have found that a lot of patients are intolerant of certain medications. I am taking paediatric atenolol. I take 5ml syrup a day but have to split this three times a day as I can not take the full 5ml in one go. This does bring down the pulse but I can not seem to take enough of the medicine to enable me to exercise (or even walk up the stairs without becoming exhausted). I also take a steroid called fludrocortisone (0.5mcg per day). The purpose of this drug is to help the body retain salt and thus increase blood volumes.
I am due to be admitted into hospital again to trial a new drug with the atenolol. This drug is Midrodine. I hope that this drug will work because if it does not I may have to have a pace maker fitted and I do not relish the thought of this. I will let you know what happens, well that’s if I am here to tell the tale.
Symptoms of POTS
I have experienced the following symptoms:
Tachycardia, syncope (fainting), extreme fatigue, headaches, nausea and in particular morning sickness, extreme thirst, constant urination, restless legs at night, get very hot and can not tolerate heat, diarrhoea or constipation, difficulty swallowing, stomach pains, difficulty eating due to bloated feeling, weight loss, can not tolerate taking a bath or shower (the heat of the water exacerbates the symptoms).
Useful Tips
Add plenty of salt to your food (this goes against the grain as I have never added any salt to my food as we are always being told salt is bad but for POTS it is very important to increase salt levels).
Drink plenty of water every day to increase the blood volume.
Wear support hosiery which provides compression of the veins. Tights would be preferable to stockings. These work in some patients. I have read that some patients use g-suits but I have not tried this myself yet.
When bathing do not have the water too hot.
Do not stand in the shower but sit on the floor.
Do not bend over, always bend with your knees.
Also when standing still try to cross your legs.
Do not drink alcohol as this makes symptoms much worse.
It is sometimes very difficult to eat large meals. I found that my tummy felt very bloated and that I often felt very sick. Also I had a very weird sensation in that I felt that my throat was closing up and that I could not chew my food properly. I also suffered with either diarrhoea or constipation. After researching POTS I found that food could play an important part in helping to improve symptoms. I now follow the GI diet (I do not actually diet but I mainly eat GI foods). I have also cut down on dairy products as I have read that they do not help POTS patients. I am mindful that my calcium intake is now lower and the only way that I can naturally address this is to eat nuts, oats and berries which I believe are high in calcium. I now also avoid garlic as this lowers the blood pressure as do nitrates (these can be found in greens and carrots and also I believe may be in tap water but I think this would depend on where you live). I also make sure I eat two bananas a day because the steroid depletes the body’s supply of potassium and magnesium (magnesium can also be found in nuts). Every morning I juice a lemon and add the juice and lemon to a cup of boiled water. I add a pinch of cinnamon, small pinch of ground cloves (only a pinch as this is a very strong spice and you should not use too much) and a pinch of ginger. These are all good for circulation. I also add half a teaspoon of honey as this is very good for the kidneys. I also drink one glass of Cranbury juice per day as this is also good for the kidneys (I am aware that this may increase my blood sugar levels). I have read that two strong cups of coffee in the morning can help to raise a low blood pressure but as I have eliminated all caffeine from my diet I have not tried this. This diet seems to be really working as for the first time in my life I have not suffered with the symptoms of irritable bowel syndrome in that I am regular now and have normal stools. The most important thing I think is to eat little and often. I eat at least every three hours so as to make sure my blood sugar levels do not drop. Some POTS patients recommend the sports drink Gatorade to help fight the fatigue symptoms. For myself I just found that it increased my heart rate so was of no use, it might be to you so it’s worth a try. I also find that high protein cereal bars are a handy and quick snack.
Exercise is very important although very difficult at times. In particular exercise the legs. An exercise bike is a good form of exercise for the legs and if you use one with a chair and so that you can lay flat this would be very helpful. Start off gradually to increase the muscles in the legs. If you can not get out of bed it is even more important to try and exercise the legs to keep the circulation going. Lie flat on your back and then you can raise your legs and pedal is if you were riding a bike. Or you can raise one leg at a time slightly then point your toe and then move the ankle so that the foot becomes straight again. You will feel this stretching the calf muscles at the back of your leg. With POTS even these simple exercises can be exhausting so do not be frustrated if you can not do these for long. Even if you can manage a minute several times a day it will help your circulation.
When you are in bed raise your head approximately 12 inches (use pillows but you could get an electric bed although this is an expensive option).
I would be really interested to hear if anyone has more useful tips?
Does anyone else suffer with both Marfans Syndrome and Pots Syndrome? I would be interested to hear!
In May 2008 I was sitting on the train travelling into London to work. The train was very crowded and suddenly I felt my heart rate going very fast and I had to get off the train. I had been experiencing a lot of stress at both home and work and I just thought that it was a bit of a panic attack. I went straight home but had to immediately call an ambulance as my pulse was racing. Apparently it was 200 beats per minute. I was admitted into hospital. I was lying on the stretcher for about an hour and by the time the nurse did the ECG my pulse had gone back to normal. I was dismissed from the hospital and given a beta blocker. This made my symptoms much worse and the following week I was admitted by ambulance again into hospital.
As I already had Marfans Syndrome the focus was on this condition. I had a CAT scan and various blood tests the results of which were all normal. I was hooked up to a heart monitor and I began to notice that if I stood up from either a lying or sitting position that my pulse would rise to 150 beats per minute. I informed my consultant of this and he carried out a standing ECG which showed the symptoms of tachycardia. I was released from hospital but needed further investigations. These included a tilt table test, various urine collection tests, numerious blood tests, tests on the adrenal gland, MRI scan, heart and blood pressure monitor tests and autonomic function test. All tests came back normal apart from the tilt table test and the heart monitor tests. I had to be admitted another two times into hospital as I was very unwell.
I have been more or less bed bound now since May as the doctors are finding it hard to give me suitable medications. I have researched POTS now and have found that a lot of patients are intolerant of certain medications. I am taking paediatric atenolol. I take 5ml syrup a day but have to split this three times a day as I can not take the full 5ml in one go. This does bring down the pulse but I can not seem to take enough of the medicine to enable me to exercise (or even walk up the stairs without becoming exhausted). I also take a steroid called fludrocortisone (0.5mcg per day). The purpose of this drug is to help the body retain salt and thus increase blood volumes.
I am due to be admitted into hospital again to trial a new drug with the atenolol. This drug is Midrodine. I hope that this drug will work because if it does not I may have to have a pace maker fitted and I do not relish the thought of this. I will let you know what happens, well that’s if I am here to tell the tale.
Symptoms of POTS
I have experienced the following symptoms:
Tachycardia, syncope (fainting), extreme fatigue, headaches, nausea and in particular morning sickness, extreme thirst, constant urination, restless legs at night, get very hot and can not tolerate heat, diarrhoea or constipation, difficulty swallowing, stomach pains, difficulty eating due to bloated feeling, weight loss, can not tolerate taking a bath or shower (the heat of the water exacerbates the symptoms).
Useful Tips
Add plenty of salt to your food (this goes against the grain as I have never added any salt to my food as we are always being told salt is bad but for POTS it is very important to increase salt levels).
Drink plenty of water every day to increase the blood volume.
Wear support hosiery which provides compression of the veins. Tights would be preferable to stockings. These work in some patients. I have read that some patients use g-suits but I have not tried this myself yet.
When bathing do not have the water too hot.
Do not stand in the shower but sit on the floor.
Do not bend over, always bend with your knees.
Also when standing still try to cross your legs.
Do not drink alcohol as this makes symptoms much worse.
It is sometimes very difficult to eat large meals. I found that my tummy felt very bloated and that I often felt very sick. Also I had a very weird sensation in that I felt that my throat was closing up and that I could not chew my food properly. I also suffered with either diarrhoea or constipation. After researching POTS I found that food could play an important part in helping to improve symptoms. I now follow the GI diet (I do not actually diet but I mainly eat GI foods). I have also cut down on dairy products as I have read that they do not help POTS patients. I am mindful that my calcium intake is now lower and the only way that I can naturally address this is to eat nuts, oats and berries which I believe are high in calcium. I now also avoid garlic as this lowers the blood pressure as do nitrates (these can be found in greens and carrots and also I believe may be in tap water but I think this would depend on where you live). I also make sure I eat two bananas a day because the steroid depletes the body’s supply of potassium and magnesium (magnesium can also be found in nuts). Every morning I juice a lemon and add the juice and lemon to a cup of boiled water. I add a pinch of cinnamon, small pinch of ground cloves (only a pinch as this is a very strong spice and you should not use too much) and a pinch of ginger. These are all good for circulation. I also add half a teaspoon of honey as this is very good for the kidneys. I also drink one glass of Cranbury juice per day as this is also good for the kidneys (I am aware that this may increase my blood sugar levels). I have read that two strong cups of coffee in the morning can help to raise a low blood pressure but as I have eliminated all caffeine from my diet I have not tried this. This diet seems to be really working as for the first time in my life I have not suffered with the symptoms of irritable bowel syndrome in that I am regular now and have normal stools. The most important thing I think is to eat little and often. I eat at least every three hours so as to make sure my blood sugar levels do not drop. Some POTS patients recommend the sports drink Gatorade to help fight the fatigue symptoms. For myself I just found that it increased my heart rate so was of no use, it might be to you so it’s worth a try. I also find that high protein cereal bars are a handy and quick snack.
Exercise is very important although very difficult at times. In particular exercise the legs. An exercise bike is a good form of exercise for the legs and if you use one with a chair and so that you can lay flat this would be very helpful. Start off gradually to increase the muscles in the legs. If you can not get out of bed it is even more important to try and exercise the legs to keep the circulation going. Lie flat on your back and then you can raise your legs and pedal is if you were riding a bike. Or you can raise one leg at a time slightly then point your toe and then move the ankle so that the foot becomes straight again. You will feel this stretching the calf muscles at the back of your leg. With POTS even these simple exercises can be exhausting so do not be frustrated if you can not do these for long. Even if you can manage a minute several times a day it will help your circulation.
When you are in bed raise your head approximately 12 inches (use pillows but you could get an electric bed although this is an expensive option).
I would be really interested to hear if anyone has more useful tips?
Does anyone else suffer with both Marfans Syndrome and Pots Syndrome? I would be interested to hear!
Medications
The following are some medications that I know about that are used to treat POTS.
Midrodine
For information on Midodrine see patient information leaflet: http://www.uhsm.nhs.uk/patients/Documents/PHARMACY/midodrineforlowbloodpressurOct07-Oct09.pdf
Midodrine (Proamatine), is approved by the U.S. FDA to treat orthostatic hypotension, a condition related to POTS. It is a stimulant that causes vasoconstriction and thereby increases blood pressure and allows more blood to return to the upper parts of the body. Use of midodrine is often discontinued due to intolerable side-effects, and it is known to cause supine hypertension (high blood pressure when lying down).
Fludrocortisone
For informaiton on Fludrocortisone see patient information leaflet:http://emc.medicines.org.uk/emc/assets/c/html/DisplayDoc.asp?DocumentID=19330
The first line of treatment for POTS is usually fludrocortisone, or Florinef, a corticosteroid used to increase sodium retention and thus increase blood volume and blood pressure. An increase in sodium and water intake must coincide with fludrocortisone therapy for effective treatment. Dietary increases in sodium and sodium supplements are often used. Gatorade is also effective in providing both sodium and fluid.
Beta Blockers
Beta blockers such as atenolol and propanolol are often prescribed to treat POTS. These medications work by blocking the effects of epinephrine and norepinephrine released by the autonomic nervous system. Beta blockers also reduce sympathetic activity by blocking sympathetic impulses.
Antidepressants
Antidepressants, especially selective serotonin reuptake inhibitors (SSRIs) such as Prozac, Zoloft, Celexa, Lexapro, and Paxil, can be extremely effective in re-regulating the autonomic nervous system and raising blood pressure. Some studies indicate that serotonin-norepinephrine reuptake inhibitors (SNRIs) such as Effexor and Cymbalta are even more effective. Tricyclic antidepressants, tetracyclic antidepressants, and monoamine oxidase inhibitors are also occasionally, but rarely, prescribed. A combination of two antidepressants, usually an SSRI or SNRI with Wellbutrin or Remeron, is also shown to be very effective.
Stimulants
Medications used to treat ADD and ADHD such as Ritalin and Adderall are used to balance dopamine levels, increase vasoconstriction, and increase blood pressure.
Anxiolytics
Anti-anxiety medications, such as Xanax, Ativan, and Klonopin, can be used to combat imbalances of adrenaline usually seen with POTS patients.
Other Medications
Angiotensin converting enzyme inhibitors, or ACE inhibitors, are used to increase vasoconstriction, cardiac output, and sodium and water retention.
Clonidine can work in patients with reduced sympathetic activity.
Ironically an anti-hypertensive drug, Clonidine promotes production and release of epinephrine and norepinephrine.
Disopyramide, or Norpace, is an antiarrhythmic medication that inhibits the release of epinephrine and norepinephrine.
Erythropoietin, used to treat anemia via intravenous infusion, is very effective at increasing blood volume. It is seldom used, however, due to the dangers of increasing the hematocrit, the inconvenience of intravenous infusion, and its prohibitively expensive cost.
Pregabalin, or Lyrica, an anticonvulsant drug, has been shown to be especially effective in treating neuropathic pain associated with POTS. In fact, Lyrica is currently the only prescription drug approved by the FDA to treat fibromyalgia. Some POTS patients also report improvement in concentration and energy while on Lyrica.
Pseudoephedrine and phenylephrine, over the counter decongestants, increase vasoconstriction by promoting the release of norepinephrine.
Pyridostigmine, or Mestinon, inhibits the breakdown of acetylcholine, promoting autonomic nervous system activity. It is especially effective in patients who exhibit symptoms of excessive sympathetic activity.
Theophylline, a drug used to treat respiratory diseases such as COPD and asthma, is occasionally prescribed at low doses for POTS patients. Theophylline increases cardiac output, increases blood pressure, and stimulates epinephrine and norepinephrine production. Due to its very narrow therapeutic index, Theophylline is known to cause a wide variety of side-effects and even toxicity.
Women who report a worsening of symptoms during menstruation will often use combined (containing both estrogen and progestin) forms of hormonal contraception to prevent hormonal changes and an aggravation of their condition.
Drugs That Can Make Symptoms Worse
Drugs that can cause or worsen orthostatic intolerance are:
A-Receptor blockers
Angiotensin-converting-enzyme inhibitors
B-Blockers
Bromocriptine
Calcium channel blockers
Diuretics
Ethanol
Ganglionic blocking agents
Hydralazine
Monoamine oxidase inhibitors
Nitrates
Opiates
Phenothiazines
Sildenafil citrate (Viagra)
Tricyclic antidepressants
Useful NHS Medicin Guide
http://medguides.medicines.org.uk/default.aspx
Disclaimer:
Statements and information regarding any products mentioned within this site have not been evaluated by the Food and Drug Administration and are not intended to diagnose, treat, cure or prevent any disease or heath condition. Any information on this site should be considered as general information only and should not be used to diagnose or treat any health condition.
Please seek medical advice for a diagnosis and treatment of any medical concerns you may have, and before implementing any diet, supplement, exercise, or other lifestyle changes.
Midrodine
For information on Midodrine see patient information leaflet: http://www.uhsm.nhs.uk/patients/Documents/PHARMACY/midodrineforlowbloodpressurOct07-Oct09.pdf
Midodrine (Proamatine), is approved by the U.S. FDA to treat orthostatic hypotension, a condition related to POTS. It is a stimulant that causes vasoconstriction and thereby increases blood pressure and allows more blood to return to the upper parts of the body. Use of midodrine is often discontinued due to intolerable side-effects, and it is known to cause supine hypertension (high blood pressure when lying down).
Fludrocortisone
For informaiton on Fludrocortisone see patient information leaflet:http://emc.medicines.org.uk/emc/assets/c/html/DisplayDoc.asp?DocumentID=19330
The first line of treatment for POTS is usually fludrocortisone, or Florinef, a corticosteroid used to increase sodium retention and thus increase blood volume and blood pressure. An increase in sodium and water intake must coincide with fludrocortisone therapy for effective treatment. Dietary increases in sodium and sodium supplements are often used. Gatorade is also effective in providing both sodium and fluid.
Beta Blockers
Beta blockers such as atenolol and propanolol are often prescribed to treat POTS. These medications work by blocking the effects of epinephrine and norepinephrine released by the autonomic nervous system. Beta blockers also reduce sympathetic activity by blocking sympathetic impulses.
Antidepressants
Antidepressants, especially selective serotonin reuptake inhibitors (SSRIs) such as Prozac, Zoloft, Celexa, Lexapro, and Paxil, can be extremely effective in re-regulating the autonomic nervous system and raising blood pressure. Some studies indicate that serotonin-norepinephrine reuptake inhibitors (SNRIs) such as Effexor and Cymbalta are even more effective. Tricyclic antidepressants, tetracyclic antidepressants, and monoamine oxidase inhibitors are also occasionally, but rarely, prescribed. A combination of two antidepressants, usually an SSRI or SNRI with Wellbutrin or Remeron, is also shown to be very effective.
Stimulants
Medications used to treat ADD and ADHD such as Ritalin and Adderall are used to balance dopamine levels, increase vasoconstriction, and increase blood pressure.
Anxiolytics
Anti-anxiety medications, such as Xanax, Ativan, and Klonopin, can be used to combat imbalances of adrenaline usually seen with POTS patients.
Other Medications
Angiotensin converting enzyme inhibitors, or ACE inhibitors, are used to increase vasoconstriction, cardiac output, and sodium and water retention.
Clonidine can work in patients with reduced sympathetic activity.
Ironically an anti-hypertensive drug, Clonidine promotes production and release of epinephrine and norepinephrine.
Disopyramide, or Norpace, is an antiarrhythmic medication that inhibits the release of epinephrine and norepinephrine.
Erythropoietin, used to treat anemia via intravenous infusion, is very effective at increasing blood volume. It is seldom used, however, due to the dangers of increasing the hematocrit, the inconvenience of intravenous infusion, and its prohibitively expensive cost.
Pregabalin, or Lyrica, an anticonvulsant drug, has been shown to be especially effective in treating neuropathic pain associated with POTS. In fact, Lyrica is currently the only prescription drug approved by the FDA to treat fibromyalgia. Some POTS patients also report improvement in concentration and energy while on Lyrica.
Pseudoephedrine and phenylephrine, over the counter decongestants, increase vasoconstriction by promoting the release of norepinephrine.
Pyridostigmine, or Mestinon, inhibits the breakdown of acetylcholine, promoting autonomic nervous system activity. It is especially effective in patients who exhibit symptoms of excessive sympathetic activity.
Theophylline, a drug used to treat respiratory diseases such as COPD and asthma, is occasionally prescribed at low doses for POTS patients. Theophylline increases cardiac output, increases blood pressure, and stimulates epinephrine and norepinephrine production. Due to its very narrow therapeutic index, Theophylline is known to cause a wide variety of side-effects and even toxicity.
Women who report a worsening of symptoms during menstruation will often use combined (containing both estrogen and progestin) forms of hormonal contraception to prevent hormonal changes and an aggravation of their condition.
Drugs That Can Make Symptoms Worse
Drugs that can cause or worsen orthostatic intolerance are:
A-Receptor blockers
Angiotensin-converting-enzyme inhibitors
B-Blockers
Bromocriptine
Calcium channel blockers
Diuretics
Ethanol
Ganglionic blocking agents
Hydralazine
Monoamine oxidase inhibitors
Nitrates
Opiates
Phenothiazines
Sildenafil citrate (Viagra)
Tricyclic antidepressants
Useful NHS Medicin Guide
http://medguides.medicines.org.uk/default.aspx
Disclaimer:
Statements and information regarding any products mentioned within this site have not been evaluated by the Food and Drug Administration and are not intended to diagnose, treat, cure or prevent any disease or heath condition. Any information on this site should be considered as general information only and should not be used to diagnose or treat any health condition.
Please seek medical advice for a diagnosis and treatment of any medical concerns you may have, and before implementing any diet, supplement, exercise, or other lifestyle changes.
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