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

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.