Janey

I've been off the forum for a bit because I've been feeling a lot better, almost normal... until the past few days. Thanks to feeling a bit better I joined a gym and started to do a bit of walking on a treadmill and some cycling on the lying down bike. I thought it was all going well but the past few days when I have finished my (very small) workout I have felt awful. I have posted before about an adrenalin rush I oocasionally get in the middle of the night. I wake up randomly, have diarrhea, nausea, vomiting, my pupils are super-dilated, BP drops and my heart is pounding in my chest. I also feel like I am above my body just watching it all play out. Anyway, I now have this feeling AFTER going to the gym. Does anybody have an idea of what these two things could be? If I can get it while I'm asleep and also after I've done (comparatively) strenuous exercise, what can it be?

I very rarely have diarrhea (its usually the constipation and gastroparesis problems that afflict me) but I have suddenly started having it over the last few days. Stomach cramps and then that mad dash to the lavatory. I always check my symptoms within the autonomic remit first to see what's going on, but just wondered whether those with diarrhea as one of your autonomic symptoms, what's normally the reason that it occurs? At first I thought dehydration, so I've upped my water intake. When that didn't make a difference I thought low beneficial gut bacteria because of my intestinal dysmotility, but I'm on 500 billion probiotic bacteria a day... It occured after a really bad spell of slow gut movement, so maybe that is the cause?

Hi KJD111 - I would post this as a new topic so more people will get to see it!

I'm about to start full time work again and have got to go on the London Underground as part of my job. I really need a cooling vest to do this otherwise I just faint and get very dehydrated. Does anyone know where I can get one in the UK?

Thanks for all your help guys. I'm pleased that migraine and stomach problems are related. It creates the worst kind of nausea feeling because it's both "headache nausea" and "gut nausea." I just don't know how to prevent these GI shut-downs. To top it all off I now have thrush too - probably as a result of some bacterial overgrowth or other, despite me taking 1000's of billions worth of good bacteria a day... It's just one thing after the other. I've been told I can take a pill for my migraines but that I will have to take it every day, even on my good days... which puts me off...

This is really interesting... because when I was on cipro, I had no symptoms...

Can anyone relate to this feeling? Take the heartrate issues out of the question... Guts are backed up - gastroparesis has flared up and intestines aren't pushing stuff through, migraine, neck and shoulder pain seems to correspond with nausea, feeling like they are all linked and causing each other. Nausea and Migraine pain gets 100x worse when standing up, and gets a bit better when lying flat, but standing up and walking around is out of the question. Does anybody have it like this some days? Why do my migraines always correspond to my gut problems?

poisoned!

One other thing - I think they just took all my test results off for "research" and didn't consider telling me what they were! Only confirmed what I already knew I had...

Flop... thank God you wrote that! I am so reassured... I'm going to send that to my Dad if you don't mind, so he sees that someone else thought Dr Ingle was being thoughtless. He's now my dad's favourite doctor because he's confirmed to my Dad that I am actually able to work and apparently "fitter than most people." So technically he's done me absolutely no favours. I've also emailed Mathias' secretary Catherine Best and Professor Grahame to see what he thinks about someone saying POTS secondary to EDS will "definitely go away." Again, thanks so much. Janey

I've also been diagnosed with this. I take domperidone at every meal time and eat small, frequent meals. It doesn't stop it completely, but it lessens the amount of time I spend feeling uncomfortable.

I've spoken on here a lot about how we have a great POTS doctor in the UK - Professor Mathias. As he's so great, it seems that he's very busy, and he has a whole range of junior doctors who see his patients for him, for follow-ups and help. Anyway, I went for my hospital follow-up two days ago and had a consultation with a Dr Ingle who I hadn't met before. He basically told me what I knew already -- that I had an extremely straightforward case of POTS caused by EDS III, and had I taken all the measures they'd told me to take when I left the hospital last time (eg salt, hydration, tilting the bed, cold showers, constricting hose, cooling vest etc etc) I said that I had but that I was having big problems with work and staying employed when my symptoms were so bad and I felt that I needed to start on medication and I had heard excellent things about midodrine. He then said that he wouldn't give midorine to me "now" but if I made more practical lifestyle changes and they didn't work, I could call him up in a month;s time and he would prescribe it over the phone to me. Frustrating considering other POTsys in the UK I've known who have been given it straight away, AND the fact that my situation is urgent -I need to try ANY med that has the possibility of helping me to gain employment and stay employed so I can support myself financially.. Next, he said that "no-one really knows whether POTS was a "real" illness or not," but that he was "prepared to believe that there was something scientific in it." He kept making references to how I shouldn't let my "psychological state get out of control." I said "What do you mean, are you saying it's all in my head?" And he said "No, no, I'm just saying that if you think you will have a crash, you WILL have a crash." I NEVER think like this - and I TOLD him so - I am THE most positive person when it comes to POTS. I wake up in the morning and overnight have completely forgotten that I have problems standing up/with tachy/with digesting food, but when I stand up and it hits me, THAT'S what reminds me, NOT loads of anxious apprehension where I work myself up into a state. Finally, my Dad who was there with me asked 2 questions - the first one about the "prognosis" of POTS. Dr Ingle's answer? "It'll definitely go away...I can't say when - it could be 6 weeks, it could be 16 years, but it'll go... it's a blessing in a way - it makes you much less likely to die from a heart attack." My Dad smiled and looked elated - FINE - but I need him to understand how I've been feeling for the past four years so that my family can understand when I can't make it to an event or occasion, or why I have had problems staying in work - NOT be told by a doctor that I'm suffering from an illness that is actually beneficial to me! And just when I felt like my "experience" of POTS couldn't be any more belittled, my Dad asked: "what's the situation with POTS and pregnancy?" "If anything, pregnancy cures POTS... you will never have felt better," says Dr Ingle! "It forces the autonomic system to function normally." Have I been on a different planet the last few years with this?! Is POTS caused by EDS really just a "flash in the pan" that will definitely go away? Am I really "lucky" that I have it? Is it not really a verifiable illness? Just a hunch that someone had somewhere along the line, but nothing to be taken too seriously? I'm so sorry that I'm angry, but I just can't understand how I can have struggled with this for years and sit in front of a doctor who has no idea what it is like for me and is telling me to go forth and multiply and live my life normally when I know there is no chance of that?! It has changed my relationship, my career, my friendships, my family...my life! I just don't understand.

My heart goes out to you. You are in my thoughts and prayers for a speedy recovery.

Rach, I'm so sorry for what you're going through. I went through exactly the same thing, except my GP kept telling me that I had "IBS and anxiety." I have the email of the POTS specialist in the UK, Prof Mathias who I emailed as a last resort, who over-ruled my GP and got me in on the NHS. It took a long time (he has a year waiting list) but it was worth it. Very few general care doctors in the UK understand the autonomic system, as it is rare to have a problem with it. You will find that they never understand, even if you do get diagnosed with it. Luckily there are a really supportive group of doctors in the UK who specialise in it and who can help you. Prof Mathias also specializes in migraines. Please PM me for his email if you want it.

I first developed symptoms at 15 when I started getting really ill after lunch at school. I can only tell now that it was low BP due to blood pooling after my lunch. I then started rowing seriously and competitively. I won a competition on the coldest day of the year and got stuck in a boat in my rowing slip in the freezing cold on the river for an hour after I'd won because no boats could get to me. After that I had various "malaises" (basically like POTS attacks) which seemed to go on for months. Doctors tested my blood count and did the blood test for glandular fever but couldn't find anything. It went away for a while and then when I was 19 the malaises came back periodically while I was at university. I thought it was lactose intolerance so stopped drinking milk. It went away a little bit but my health gradually declined. At age 22 I went to India with my current boyfriend and contracted an infection from a puppy on the beach and started experiencing serious heart and blood pressure fluctuations and severe stomach and intestinal problems. I got back from India and was told I had IBS. I suffered with this for 3 years, going back to the doctor but he just ignored me. I kept looking things up in the internet and finally typed "low blood pressure and nausea" into google and came across DINET. I find the relevant doctor (Prof Mathias in London,) wrote to him and he got me in to see him. I got diagnosed last year with EDS III, POTS and Gastroparesis, and having a REASON, finally, for ten years of illness has really changed my life.

My boyfriend (of four years) has a waxing and waning approach to my illness. He's one of these people who is constantly on the look-out for scams or being ripped off etc, and he uses the same approach to my illness. He wants to know what the status is of my health because he needs to work out whether he has a "fair deal" or not. When I'm really bad and it's obvious, he does everything - performs the housework, pays the rent and looks after me. When I get a little bit better, he needs to vent to me how hard it was for him to do everything, and he expects me to make it up to him. But the problem with that, is if I make a "big gesture" after a bad crash, I just slip back into the crash. The "keeping tabs" approach he has, has upset me a lot over the years, but when I look at the big picture, he has ALWAYS been there for me when I most needed it. I'm sorry your husband doesn't understand as much - have you taken him along to your doctor's appointments?

My Dad is just 60 years old. Is that an age at which people get an enlarged heart?

Does dysautonomia run in families? I think my Dad has got it.

I have those red scurvy dots on my arms and the UK POTS specialist Prof Mathias pointed to them and said they were another sign of dysautonomia. Interesting.

I understand how if something becomes a constant possibility for you, you fear it. I have this about vomiting. My stomach is the first thing to go whenever I get POTsy, and there are SO many ways to vomit when you have dysauto - through gastroparesis, intestinal dysmotility, acid-reflux, POTS, pre-syncope, abdomen pooling... there isn't an hour of the day where I don't feel nauseous all the time. I think it's about control - as they are things that we can't control, we fear them. It's like not even having a hold on the time or place or whether it's in public or private. It's irrational, but it's natural, I think, if these things threaten us constantly. My thoughts go out to you

I'm in the UK, and these are widely available to people in the UK who have IBS. Buscopan is over the counter but mebeverine is prescription only.. Whereare you guys based? xx

I used to have this very badly, very painfully... one of the things I found that helped were anti-spasmodics... mebeverine and buscopan. Do you have those where you are? They are even better if you take them before you know a bloating episode might come on...

I've been having quite a lot of career success despite POTS recently by making myself a freelance and only working on the days that I feel okay. I can predict when these will be because every month, on the dot, five days before menstruation, I feel like death... and that continues into the 2nd day of menstruation and then ceases. The rest of the time I feel "okay" and if I don't push myself, I just about cope. That gives me 3 weeks a month, to work. Problem is, despite having "success" I am not making enough money to live off by only working 3 weeks a month (and that's relying on the timing for work being right). While my self-esteem is a bit better, my financial situation is not the same as it would be if I were in a full time job working my way up in a company. Before you groan, I know I am lucky to even be doing this much. It has it's troubles though because on my good days I decide that I can work full time and I make applications to companies, get accepted and start work... then when that time of the month comes round, I need a week off work... then I get sacked or laid off, or put on sick leave. Is there any way I could stop my menstruation? I take the contraceptive pill anyway and I'm sure that lessens the impact of a POTS crash, but I am seriously wishing I could just have a hysterectomy or something to take my periods away. I've tried taking the pill back to back but I still get breakthrough bleeding and get all the symptoms anyway. Anybody got any ideas about how I could lessen the impact of my menstruation on POTS? My stomach and intestines literally stop working during that period - they don't move. My vision is constantly greying in and out, I'm fainting, I'm dizzy, have a constant migraine and nausea. I even have my incontinence episodes (when I stand up) during this time too. My POTS doctor keeps saying "menstruation isn't my area," so what kind of doctor deals with menstruation making your primary illness MUCH WORSE? And what hormones during menstruation could effect POTS and how?

FloP!!! I can't believe all that happened to you! You poor thing! Where abouts in the UK are you based? I hope you make a quick recovery... that bloody ice-skating incident seems to have caused a horrible chain reaction!

I'm wondering if anyone can give me any advice on diet with EDS III, gastroparesis and POTS. I have been told by specialists that both EDS and POTS affect the intestines and gastroparesis affects the stomach, so I'm feeling like I can't win at the moment. My EDS specialist has told me that my small intestine has bacterial overgrowth and that I have a lot of divertcula, therefore I need to eat very few carbohydrates, no sugar, more lean meats and more fibre. Fine, but then my gastroparesis doctor says that I should not eat too much protein or fibre. On top of that I get bad acid in my stomach and so always get cravings to eat fatty things and carbohydrates to get rid of the acid, then end up getting too full and being ill for days. Fruit is a complete no-no for me, and if I eat more than three vegetables at a time, my gastroparesis kicks in. My POTS doctor says that I have abdominal pooling which is affecting the speed of digestion in my large intestine, which is then holding everything else up. Can anyone tell me what to eat that will work for me? Even if it's one of your daily diets I just need to try it out and see if I can make it work?