It is a real fight to get better so listed below are some of the key things that I think can help.
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.
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. However I have now descovered that to stop taking seroxat this must be done slowly.
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.
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.
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 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.
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.