targs66

hi Rach, If you don't mind my asking, can you let me know the name/location of the doc (and the name of the correct clinic!) who specializes in ME and POTS/autonomic dysfunction? I'm also in the UK ... I have neurally mediated hypotension, which was diagnosed in the States. I'm seeing my GP on Monday; would love it if he would refer me to someone who's heard of these things! Thanks so much, targs66

Thanks for the info and encouragement, Julie, and also for posting that link! They actually gave me a copy of that paper when I was at Johns Hopkins, and I found it incredibly informative, but I only had a hard copy and couldn't pass it on. Billiam - if you're reading this, I highly recommend taking a look at that paper (in Mack'sMom's posted link above) - it has a lot of info about the similarities and distinctions between POTS and NMH, as well as meds/treatments. I actually was prescribed Florinef before the midodrine. I always seem to have awful reactions to anything steroid-related, and it was the same with the Florinef. I took - literally - 1/8 of a Florinef tab and within the hour had the familiar shakes, thick head and buzzy, sick feeling. I had taken it with a decent sized breakfast, b/c I know it can affect blood sugar. Later that day I took another 1/8 of the Florinef - still feeling rotten, but wanted to try to gut it out - and felt even worse. I ended up with an ocular migraine, which i haven't had in over 2 years. I have a weird hypersensitivity to drugs. I take very small amounts of the midodrine (usually less than one 5mg pill a day is enough for me, broken into little bits taken throughout the day), and while I've got some side effects (some jitteriness and spaciness), they are manageable. (Thank goodness for that - without insurance, there'd be no way I could afford the full prescription!) I agree, Johns Hopkins was great (wish those were my regular doctors!). Hopefully I'll get some help from my GP Monday - will keep you posted. Best wishes for your son's recovery.

hi Billiam - Thanks for your reply - unfortunately, I've got so few answers! The docs that diagnosed me are at Johns Hopkins (and i can't afford any more care there), so I've got no one to ask about prognosis, tweaking meds, other relevant diagnoses, etc. The docs were excellent, but I don't have insurance in the US. I'm due to see my GP here on Monday and will post if there's any significant developments from that visit. That's one of the reasons that I've found this forum so helpful - I'm having to manage this on my own, and need to understand everything I can about it. Sounds like you are going through it, too, although your symptoms are quite different than mine. I have perpetually low BP- with my midodrine, it's typically about 95/65. Without it, it was usually about 88/58 (or lower in the mornings). One of my biggest hurdles to living any kind of normal life is constant waves of weakness/dizziness - it's almost as if I am on the verge of a blackout. The midodrine has helped somewhat with that, but it's very unreliable. I wonder if it would be helpful for you to bring your doctors' attention to some of these lesser-known dysautonomia conditions, especially if you don't seem to have POTS? I'll certainly keep posting if (and when!) I find out more. Thank goodness for this site. Best of luck with finding some answers. -targs66 p.s. England is great; the people are fantastic -- but the weather is abysmal!!!

I'm posting this because it might help some of those who (like me) were told they didn't have POTS. I'm American but live in England - the original tilt table test was done in Liverpool. I got the referral for the original TTT from a visiting GP who took note of my low BP (was 88/55 in the doc's office). The technicians had to ask a consultant whether or not to proceed with my TTT b/c when I was lying down my BP was 73/59. However, I was told that the results were "normal" because my BP and heartrate went up when I was tilted (it went as high as 110/98). I then had various examinations at Johns Hopkins last fall, including another TTT - only this time I was fasting, and they administered some kind of adrenaline during the second part of the test. During the first part of the test, I again felt wretched, with low BP - but it didn't indicate POTS. However, after the adrenaline was introduced via IV and I was then tilted, my heart rate and BP suddenly plummeted. I don't know whether I passed out; just remember moaning while I tried to stay conscious. Therefore, they concluded that I don't have POTS, but I do have neurally mediated hypotension. I've been prescribed midodrine and beta blockers. The midodrine was very helpful for a bit (although I've been going through a bad patch for the past few weeks). Apparently NMH is an abnormality in the regulation of BP- there's abnormal communication between the heart and brain (I think it's the same thing as neurocardiogenic syncope). It is just so helpful to have some kind of diagnosis. It was through that diagnosis that I found this forum. If it wasn't for the repeat TTT, I'd still be in the dark (and continue seeing a GP who thinks this is all psychosomatic). I'm sure there are many people here who know much much more about NMH or NCS; I just thought the story of my original missed diagnosis might help others who have been told they're normal. Hope this helps.

Thanks, Emma! I've got an appointment with my GP next week. He has been useless so far (recommended that I try taking up swimming when I explained that I was too weak and dizzy to even manage a trip to the grocery store). I only got my diagnosis last fall when I went to my parents' house in the States and saw the docs at Johns Hopkins. I'm hoping that my GP will finally get on board (that is - stop treating me as if I am just a mental case) now that I have a "legitimate" diagnosis. I may ask if he'll refer me to the Newcastle doctor. However, I don't have POTS; I've got neurally mediated hypotension (along with many of the other debilitating dysautonomia symptoms), so I'm not sure whether they will see me. I hope so - I've used up my savings on the Johns Hopkins visits! Thanks again for the advice. p.s. I also wonder about the HRT connection. I often think it has made me worse overall, but I became menopausal overnight (hysterectomy) and have found the menopause symptoms completely unbearable. Please keep us posted about what you find out.

I just wanted to respond to your post - it sounds like you are really going through it. I have found that I have to be an expert on my own body/condition. I used to follow every bit of advice from well-meaning people, and spent a lot of time, money and effort trying new supplements/vitamins and even meds - to no avail. I guess what I'm trying to say is that it is incredibly useful to hear about others' experiences (it's why we're all here to some extent, I suppose) - but that it's equally important to recognize that what works for one person may not work, or may even be harmful, to you. I know that's frustrating - why on earth can't someone just tell me how to get better???? - but I'm continually surprised at how different we all are despite the similarities in our conditions. That being said, here's what has worked for me - when I have that awful panicky floor-dropping-out-under-me feeling, I take a very small dose of propranolol (it's a beta blocker). I don't like the side effects, so I don't take it regularly (I have low blood pressure and neurally mediated hypotension), but for those times when I am going through a "bad patch" I have found it is useful. I take midodrine daily (about 5mg a day in total, broken up into small doses), but during the bad times, it doesn't help at all. I absolutely cannot tolerate Florinef or cortisol (in any form). You may need to spend some time juggling your meds to see if a particular combo works for you. I hope things improve for you soon!

Interesting comment from Dani (that klonopin helps with med hypersensitivity).... I don't think I've ever tried klonopin, but had unhappy results with diazepam. A doctor prescribed it to help with nighttime anxiety and insomnia. I did the usual thing - split a tablet into smaller bits - and tried it several times. If and when I did manage to sleep, it was a dopey, groggy sort of dozing, and I woke up feeling worse than usual (completely drugged and achy). It also seems to really depress me. (I have neurally mediated hypotension, not POTS - maybe that's got something to do with it??) Sorry to go on about it - but I'm just happy to find other people that don't tell me that this hypersensitivity is in my head!

Thanks, Sara - I agree that sometimes it may be additives that are problematic (I can't tolerate aspartame either), but some things with additives don't bother me, and other things without do, so I'm not sure what the cause is. On the plus side, I can take teeny amounts of midodrine (I take about 1/8 of a 5mg tablet three to four times a day) and it does raise and stabilize my BP. (More than that is not good; I just feel jittery, spacey and sick.) Thank goodness - without insurance, there's no way I could afford to take the recommended dose of one 5mg tablet every 4 hours. Thanks too for the book recommendation. I'm cash-strapped (I barely work at all now), but will try to put aside enough to buy it.

I realize this is an older post, but I've only just come across it... I have the same problem (hypersensitivity to drugs), only I'm not sure whether it's only drugs that act on the autonomic system. Doctors NEVER believe me. I am also weirdly sensitive to some vitamins, and usually the ones that are supposed to be helpful!! For example, I can't take vitamin D at all, and most of the B vitamins have a bad effect. I end up feeling sick-ish, weak and dizzy within an hour or so of taking them. I've tried over and over and over - different formulations, injections (B12 and magnesium), with food, without food and so on. It doesn't seem to be a digestive or allergy issue, because I can drink coffee (I take it with milk, no sugar) and take aspirin without ill effects. The absolute worst reaction I have is to anything steroid- or thyroid related. I'm going to see if the choline helps - hopefully it won't also be a problem!

Thanks for that info- I had never heard of pulse pressure before.

Thanks, all! Like I said, it's a real relief to find all this information - and informed people - in one place.

Can someone explain "pulse pressure?" I have a home BP cuff which reads diastolic, systolic and heart rate, but I'm not familiar with pulse pressure. many thanks.

hello - I am a newbie, so please bear with me! I have about a million questions but think I need to start with an intro. I have had what has been called chronic fatigue for years. It was manageable - exhausted all the time, but I could work a very high pressure job by avoiding everything else (social life, activities, etc.). I had a hysterectomy in March 2007, and feel as if I've gone downhill ever since. (I am on HRT, as they removed my ovaries.) I started getting "dizzy spells" about a year after the surgery, and then they became constant. I am American but live in the UK, and there is very little help I can get from the NHS (I don't have private insurance). I spent most of what was left of my savings last fall to visit Johns Hopkins, where i was diagnosed with neurally mediated hypotension. I've been prescribed midodrine. In some ways it has helped immensely - I've been able to go for short walks again on "good" days - but I can't get any consistency. For example, I've been feeling pretty awful for the last few weeks (dizzy, weak, utterly exhausted, confused, anxious, and so on) and the midodrine doesn't seem to make a difference. I think I will leave it at that for now. I'm so glad I found this site. I welcome any comments/ suggestions about how best to navigate this forum. I'll read what I can on the site and then start the questions! all the best, targs66