targs66

Funny you should say this - ! I've only very recently started taking a tiny bit of Benadryl at night, based on some things that I've read about mast cell disorders. I've not been diagnosed with MCAD, and had never heard of it until I read some things on this forum, but thought maybe it was worth a try (why not??). I do feel a bit better - still very tired, but my head has been a bit "clearer" over the past few days. I ordered OTC Zantac and Zyrtec and will see if they help (the Benadryl definitely makes me too sleepy to take during the day). Please, please keep us posted on your progress. I'm very interested to see how you get on. I'll do the same. Fingers are crossed for you!!!

Naomi - Again, I'm really sorry you feel this way, but I have found your post helpful, so your being a "whiny downer" has helped someone! It's just a relief to me to feel that someone can relate: I am so familiar with the dreaded "I just can't do this again" feeling when I wake up. (And I don't even have kids; am just struggling to meet my own needs.) I guess your post just makes me realize that I'm not alone in all this; again, I'm just so sorry that you're going through it too. I really hope you can find something out that helps you. Don't feel bad about having a rant. On a more positive note, I think this is the right place to find something, anything that helps. all the best.

I'm glad you asked this - I've been wondering the same kind of thing but couldn't articulate it. I don't have POTS; I have neurally mediated hypotension. My symptoms are quite different than what many people here describe: my heart rate almost never goes above 85, but I am dizzy and shaking with any effort at all. I was thrilled to get my NMH diagnosis last fall- thought I was FINALLY on the road to some recovery. I've been taking midodrine with very mixed results. It keeps my BP up to a reasonable 95/65 (on average) -- but I still feel utterly wretched much of the time. I feel the same way - that there is something underlying/causing the NMH, and that's why the midodrine has little effect on how I feel overall. (There are times when my BP is as high as 108/70, and I feel at my worst.) I haven't had endless tests simply because they haven't been available to me on the NHS, but I don't know that I would find anything out anyways. So yes, I spend ages trying to learn all I can in the hope that I will eventually find SOMETHING that will give me some improvement. I feel like my life is utterly consumed by babysitting this body that I am in - did I eat right? did I get enough sleep? when can I have my nap? better have more salt/fluids, and so on -- and despite all the effort I still can barely manage a trip to the grocery store. I'm sorry you feel this way too -- but maybe through forums like this, where we share information and advice, we'll finally get to the bottom of it.

The fatigue is the worst symptom for me. I have neurally mediated hypotension, not POTS. I have been told I have chronic fatigue syndrome for about 20 years. It's just gotten worse as I've gotten older. I've tried a regime of thyroid meds, with and without adrenal support and found that the meds made me much worse. I also saw Dr. Myhill in Wales - she is a wonderful, caring doctor who has helped many people, but her protocol of supplements did not help me. Many of them (Ribose, B3, magnesium, co-q10) were intolerable and made my symptoms worse. I am so frustrated at what this fatigue takes from me. I am continually amazed at how my husband can function - a typical weekend day after a busy work week is get up at 8.30, go for a walk with a friend, run errands/grocery shop, do some gardening, and then meet friends at night with no effort at all. I can do one of those things on a good day, and I will probably pay for it the next, and i don't even work anymore. I am sitting here typing feeling exhausted and glad that I can go to bed for a nap shortly - missing out on another sunny spring day. Sorry to vent; I am just so sad at the life I lead. I hope we all find some help soon. ***I'm just adding this line after re-reading what I posted above- sorry to be so negative. There ARE people who get better; as others here have noted, we don't hear from them very often because they are out living their lives. I take hope in the fact that people do recover enough to live enjoyable lives.

I had a hysterectomy (ovaries also removed) in March 2007 for very heavy periods, severe endometriosis, fibroids and ovarian cysts. I have had chronic fatigue for at least 15 years that has become progressively worse - but I could still work. My most serious problems started after the hysterectomy - I just kept feeling weaker and more unsteady, and then the dizziness hit in August 2009. Was diagnosed with neurally mediated hypotension last fall. I do take HRT (in the form of Premarin) b/c the sudden menopausal symptoms were unbearable: I can deal with hot flashes, but the pounding heart and massive anxiety attacks all night long were absolute ****. I feel like there's a definite connection for me between the sudden hormonal change and my current much-worse condition (I am almost housebound now). I don't know what conclusions to draw from my experience(!) I don't want to say that no one should opt for a hysterectomy, especially given that some women seem to feel much better after they've had one, but I thought it might be useful information for anyone who's facing possible hysterectomy or ovary removal. Hope you are feeling better by now!

I'm sorry you're going through this!! I'm one of those people who absolutely cannot take Florinef. I was shaky, confused, very weak, agitated, hungry-but-nauseous. I know there's "side effects" with most meds, and I know I have to take smaller amounts than most people (have no idea why) -- but there's "side effects" and then there's "this is making me so ill I can't take it." I really don't have a pill/med phobia, so I know it's not imagined. It took me a day or two to get the Florinef out of my system and get back to my usual (crappy!) state. Midodrine has worked much better for me - again, very small doses, but at least it doesn't make me feel like I'm dying! (I have no idea if this is relevant, but I have neurally mediated hypotension, not POTS.) Maybe you should try tapering off over the next few days and see if you feel any better, rather than stopping it suddenly. I hope the "ow" goes away soon!!

I think there's a definite link between my neurally mediated hypotension and my CFS - I've been told I've got CFS for over 20 years, and it just kept getting progressively worse - BUT I could still work. It was an enormous struggle (I knew something was seriously wrong when I had to lie down on the bathroom floor every morning b/4 I could manage to get in the shower) -- but I wasn't dizzy. This dizziness has demolished my life. I think the CFS continued to wreak its damage over the years, leading ultimately to something causing the dizziness. Sorry, this isn't very clear, but I'm not great today.

If Dr. Brinker has changed his field of expertise & was able to help you, Targs- my apologies. Your experience would certainly be more current. My impression- great guy, but the wrong guy for the job. hi Julie, no need for apologies (but thanks for being considerate!! ) -- I agree with you, but wasn't sure whether I could be a bit negative about a doc in the forum itself; hence the PM. To be honest, I wasn't thrilled with Dr. Brinker's "bedside manner" - he was very short and didn't listen very well. Luckily, I only saw him to sum up the results of my TTT. The doc who acted as a sort of go between/referring physician was great (Dr. George Sack) - he is (I think) director of the international program at Hopkins (I was coming over from England, so I was seen as an international patient even tho I'm from the States). I am eternally grateful in that I finally got a diagnosis at Hopkins, but I agree - they are so busy and distracted. I really had to bombard Dr. Sack with emails and phone calls in order to get things sorted before I had to leave for England. Gnomegarden - I really hope you find some help for your daughter soon. all the best, Shelly

Rach, I'm so sorry to hear that you've got this new added anxiety to deal with. I hope you can get some sort of a fair assessment before they determine that your license should be revoked - I mean, if you have never had fainting or dizziness issues while seated, then it seems extreme to revoke your license. I totally understand the safety issues, and of course, we can't put others at risk, but still.... Really hope you can keep your license. Good luck with this, and keep us posted. all the best, Shelly

hi - I saw a Dr. Brinker in the cardiology dept at Hopkins last year - will send you a PM.

Thank you, Rach, Corina and Cath!!! That is such helpful information. I am not good about "fighting" with my GP b/c I don't know what the rules are. I will arm myself with that information before I go back to him. I think I'll see the local cardiologist first (the appointment is early April, so it's not too far off) and see what happens. If that's a dead end, I'm going to have to go to battle in order to get a referral to Dr. Mathias or Dr. Fitzpatrick in Manchester (or the doctor in Bristol). I haven't heard of octreotide; will also look into that in the interim. I really appreciate all the information. Rach - keep us posted as to how you get on with your appointment at the end of March. best, Shelly

hi Rach (and everybody) - I'm American but live here in England. I haven't had much luck here. I did have a TTT done in Liverpool ... (can't remember the name, but it is a cardiology hospital!) -- but was diagnosed as normal. I wasn't told to fast for the test, which I suspect makes a difference. Also, my supine BP was 79/45 - the clinicians carrying out the test stopped to ask if they could proceed b/c they were concerned about my BP being that low - but they were told it was okay to continue. I was told that despite the very low BP throughout the test, my heart and BP responded "as it should" and therefore I am normal(!) The only reason I have a diagnosis (neurally mediated hypotension) is b/c I saw docs at Johns Hopkins last fall. They also did a TTT, but I was fasting, and they administered some kind of adrenaline substance for the second half of the test. When they added adrenaline to my IV line and tilted me, my BP and heart rate plummeted. I was diagnosed with NMH and prescribed midodrine. I'm also trying to get a referral to Dr. Mathias, but my GP says that he can't do it, so he's referred me to a local cardiologist. He also won't refill my Midodrine prescription because he says it's "off license." I have no idea if the cardiologist has even heard of NMH or POTS or even dysautonomia, but if not, I am going to beg him to refer me to Dr. Mathias or someone who is familiar with the condition. I hope you have better luck!! I've got my cardiology appt. on April 6 - will let you know what happens. Please keep us posted as to what happens with you - I'd be curious to know if you can get a referral to Dr. Mathias or one of the other specialists in the country. all the best, Shelly

I tried Amantadine - my brother has MS and gave me a few of his capsules about two years ago. It wasn't good for me: although I was alert, it was that icky edgy, heart-pounding sort of feeling, with a bit of buzzing in my ears. I wasn't sleepy, but my brain felt foggy. My brother was prescribed it to help with his MS fatigue but stopped taking it for the same reasons that I did. I hope it's better for you!

I thought this might be of some interest -- video article in the New York Times about dealing with rare diseases. It's just six patients talking about their experiences (one has PAH; another has a form of syncope!), but it struck a chord with me. (Unfortunately, you might need to sign in to the NYT website to see it.) http://www.nytimes.com/interactive/2011/01/20/health/healthguide/te_rare_diseases.html

Very glad that you got the no-cancer dx.... but I'm sorry to hear about all the other health complexities. I also have some hyper-coagulating issues - have had to have blood re-drawn over and over b/c it apparently clots much more than normal (it has to go in the tube w/out coagulants). (My GP won't examine this further; says that's just how some people are.) Anyways, I've read that people tend to consume far too much omega 6 in proportion to low amounts of omega 3 fat in a typical "Western" diet. One food that is apparently high in omega 6 is peanut butter -- and I live on the stuff. (I've had pb on toast for breakfast for about 20 years now... ) ... AND that one problem with this imbalance (excess omega 6) is that it can cause hyper coagulation. I don't have a scientific background, and realize that I don't fully understand the big picture (and that we can't believe everythign we read online!)-- but thought this information might be helpful. Anyone with more info, please chime in! And keep us posted, Julie. I wish you all the best.

I'm glad to hear it's not just me (how many times do I say that, with enormous gratitude, upon reading posts here? )... I had a total hysterectomy almost 3 years ago and it was the beginning of my dysautonomia (had CFS for years previously, but was reasonably functional). I found the menopausal symptoms intolerable and have been on HRT ever since. The "hot" part of the hot flashes don't bother me that much (I'm freezing cold all the time here in damp England) - it's the awful gasping, heart pounding near-panic that Lieze describes that did me in. They are much worse at night. My heart starts thudding and my lungs seem to constrict as I get hot - like a mild asthma attack (I used to have asthma so I'm familiar with the feeling), and I feel panicky and miserable. It takes at least 45 for everything to subside - and then it all starts again within the hour. Unfortunately, HRT has not entirely helped, and I don't think my body likes it. Too little estrogen, and the hot flashes and anxiety start. Too much and I just feel ill - dopey and weak and tearful. I tried "balancing" the estrogen with progesterone, adding testosterone, taking bio-identicals -- still haven't got to a balance. I am quite sure this constant imbalance contributes to - and quite possibly caused - my problems now. BTW - thanks to ToddM for adding a male perspective - I always wonder how much of this is menopause and how much is whatever other conditions I've got!

I have had similar problems, but I don't know to what extent they are attributable to the midodrine. After I started taking midodrine, I started monitoring my BP when I was lying down b/c I thought maybe I'm getting the dreaded "supine hypertension" that it can cause. If I'm flat on my back it's about 85/54, HR around 62 (not that unusual for me) but it was very difficult to get a reading while lying on my right side -- and that's when my heart pounds the most and I feel the worst. Finally got a reading - of 71/42??? This has happened more than once in the past few weeks. I definitely have the exact same feeling as abetterjulie described - being utterly exhausted, but feeling wretched when I lie down, like I'm drowning. (The head of my bed is elevated and I have three pillows, but it doesn't seem to help.) My very uninformed theory was this - the midodrine has been helpful to me if I am "active" (a short walk or easy housework). I thought maybe I am doing more than before I started the midodrine, even if not by much, but maybe I'm in such bad shape (deconditioned) that when I do these mild activities, my body is very tired and thus can't maintain a normal BP at night(?) I'm trying to take even a very short walk a few times a week to improve conditioning, and see what happens. Just a thought - hope it's helpful.

Thanks for the answers/comments. I may try it again. As I mentioned, I took it for years when I was much healthier. If I do try it, will post the results!

What does "tx" mean, please? I'm curious b/c I took Wellbutrin for years (when I was in better health and still working fulltime), but couldn't respond to your question b/c I didn't know if tx meant "trigger" or maybe "treatment"? thanks!!

Just my two cents worth - I couldn't tolerate the Florinef AT ALL. I know it works wonders for many people, and I hope you are one of those, but don't be too discouraged if it doesn't help. My doc switched me to midodrine, which has been helpful (I am still far, far away from where I would like to be, but at least it's a start). I agree with Lieze - the betablockers are a godsend when you're getting those panicky surges. I can only take very tiny amounts b/c my BP is too low, but it seems to stop that vicious cycle of surge/crash/surge (I don't take them every day; just when I'm having problems). Unfortunately it's trial and error to see which combo works for you. I think it's always wise to start with very small amounts and slowly build up. Best of luck to you - keep us posted.

I have wondered whether the hormonal fluctuation exacerbates dysautonomia? A lot of women seem to have serious problems as they go through menopause. I had a hysterectomy (including ovaries) almost 3 years ago, which brought on instant menopause at the age of 45, and it made me about a million times worse than I already was. I was tired before, but as long as I had enough sleep, I could do very physical things. I was still working part-time and horsebackriding 2-3 times a week. After my surgery, I healed very quickly but went downhill - just felt weaker and weaker, and then the dizziness started. I've been on HRT since the surgery but have never felt hormonally balanced - I still get hot flashes at night. I tried bio-identical hormones but felt much worse so I'm taking the dreaded Premarin. I don't think it's good for me, but I can't wean off it. The hot flashes seem to make my BP and heartrate go completely haywire. I'm so hypersensitive to meds and I think the Premarin is no exception, but I can't NOT take it. Sorry, that's not very clear, but I'm not coherent today. My point is that I think that the hormonal changes during menstruation and menopause make the dysautonomia symptoms much worse.

I am in the same boat - I could cope with my chronic fatigue until this **** dizziness/vertigo started. I was exhausted, utterly exhausted all the time, but could always push myself to do things (which is probably why I'm so wrecked now). The dizziness for me is like the ground suddenly shifts out from under me, even if I'm sitting down. I suspect it's a sudden BP or heartrate fluctuation, because my head also goes blank. I've never fallen down, but I find myself reaching out to touch something stable when it's happening. It's always accompanied by a sort of gasping feeling, like a sudden jolt of panic, which is why I think it's BP or heart related. I don't think it's my inner ear because I can be sitting perfectly still and have it happen. Midodrine has helped somewhat, but if I am having a bad day, nothing works!

I'm glad this question was posted. I have been taking midodrine since I was diagnosed at the end of October last year. It's been difficult to sum up how midodrine makes me feel because it seems variable. When I am doing something "physical" (I can't really exercise, but on good days can go for a walk on my own), it seems to work best. In that sense, it's fantastic - I love being able to take walks - but it just isn't consistent. Some days I feel as dizzy and unsteady as if I hadn't taken any. Plus, if I am not moving - for example, trying to do work on the computer - I find I can end up very very spacey and sleepy. And if I am not well (one of those inexplicable very bad days), it doesn't seem to help at all. I also wondered if I had built up a "tolerance" because I think I felt better when I started taking it than I do now. I take very small doses - about one 5mg pill per day, broken up into pieces that I take about every four hours. (I am weirdly hypersensitive to drugs.) If I try to increase the dose because I'm not feeling great, it has a bad effect - I end up feeling just exhausted. Doesn't seem to make much sense. Finally, I'm taking what I think is the generic version, b/c the label just says "midodrine hydrochloride," not Proamatine (it also says "Mylan" who I think is the manufacturer). I don't know if that is not good; I seem to remember someone saying the generic version was "rubbish." I'm sorry that I don't have answers!! Do let us know if you increase your dosage and if so, how you feel. Hope you can find the info you need.

Thanks for posting this, and congrats for finding this wonderful doctor! I'd love to hear of any changes they've recommended to your regime and/or meds. Apologies if that's nosy - just trying to learn everything I can (I'm in the UK and thus far my GP hasn't referred me to anyone who's a specialist in this area). I used to take Wellbutrin, but that was during healthier days - wondering if I should try it again. Best of luck to you with the new meds. Thanks again for posting this information.

I agree, Lance - a bit of knowledge is a huge comfort. Beyond the reassurance of a diagnosis, I also think it's crucial in "managing" this condition; for example, as you said, realizing that long periods of sitting still is problematic, and why that's problematic, could help you find an alternative that avoids a trigger. Unfortunately, I feel like I am worlds away from normality these days - I am desperate to get back to work, and really afraid that might not happen (and then what????). But I take some hope from experiences of some people on this site... fingers crossed.