targs66

I also get the drop in BP without a corresponding rise in heart rate. I was diagnosed with neurally mediated hypotension based on a TTT, which also eliminated POTS as a diagnosis (since my HR doesn't go up to compensate for low BP). My understanding is that NMH is just about the same thing as neuro cardiogenic syncope (NCS), but if anyone knows more about this please pipe up! Obviously, it's difficult to monitor this because you can't anticipate the BP fluctuations. However, I find that some times that my BP is in normal-ish range (97/68, say, which is high for me), if I take it immediately after that, it might have dropped to, say, 88/58. My heart rate seems to stay the same - usually around 70 - 72 bpm. I think it's why I feel lightheaded and spacey so much of the time!

Just wanted to add my 2 cents -- don't worry about "taking up airtime"! I find that I learn from virtually everything that's posted here - even if it doesn't seem immediately related to my specific condition, it might give me a clue as to what is going on with me .....

I took Zoloft about 12 years ago (when I was considerably healthier) and just couldn't tolerate the brain fog. I then ended up taking a low dose of Wellbutrin during the day, as well as a very low dose of Paxil about 6 hours before bed to help with sleep. I found the Wellbutrin and Paxil combo good and took it for years. I'm very drug-sensitive, so less than 1/4 of the recommended dosages worked fine for me. (Again, I was considerably healthier then- I'm not sure how I would react now.) The Wellbutrin has more of a stimulating effect, whereas the Paxil can be quite sedating. I know that doesn't answer your question specifically, but I hope it helps!

SeattleRain - thanks for the tanning beds info. I didn't realize that it was the magnetic ballasts that caused problems. I am indeed leery of skin cancer - both parents have had various cancerous (but non-metastasizing) growths removed from their skin. I'll have to do a bit of looking around to see if there's tanning salons nearby where I can get the UVB rays (I'm living in northwest England, where everyone goes to salons - sometimes with the awful orange results!). Lyn and Issie, please do keep us posted on your progress - you are both way ahead of me with your understanding of genetics!

That's fantastic news - congratulations!! I hope it's not too selfish to say that I hope you can act as an "ambassador" to enlighten your colleagues about dysautonomia! Best of luck!

Jeez, so sorry you had to go through this -- but I am so glad that you could walk away feeling not too upset. It's so disappointing when you get your hopes up only to realize you've wasted your time. I've learned the hard way that I have to tell myself "okay, this guy isn't going to help me so I'll just have to keep looking..." Of course, it helps enormously to be able to tell everyone here about it!!!! Hope your next visit goes much, much better.

hi Lyn, Thanks for this - fascinating stuff! I am going to have to do some serious "homework" to understand all this. I find it so reassuring just to understand why on earth I can't take meds or supplements, especially those that seem to have almost no effect on other people. Time for some reading.... thanks again.

I hate to sound like such a whiner, but unfortunately, getting sun is almost impossible! Today there's a rare bit of sunshine, but I'm sitting inside in long johns, jeans, two long-sleeved shirts, scarf, and a fleece zipped up to my chin - and I feel absolutely freezing. About to don my fingerless gloves... My understanding is that we are so far north that during winter months the sun is too far away to give you any vitamin D benefits, even if you could manage to expose some skin when it's this cold out.

Wow, I find this all so interesting b/c of some recent things I learned: just recently, there were stories in the news about how grapefruit can "intensify" the effects of some kinds of drugs. I found this interesting b/c I am SO intolerant of even tiny doses of meds and some vitamins -- especially vit. D. My (unscientific) understanding is that some compound in grapefruits "deactivates" some of the enzymes necessary to metabolize some drugs. One of the researchers said something like with these enzymes being deactivated by the compounds in grapefruit, it's like taking 10 times the amount of the particular drugs. Looking into it further, I read that the Cytochrome P450 enzymes metabolize drugs like vitamin D, other steroids and hormones. Low levels of these enzymes can have devastating health effects. Unfortunately, a lot of the stuff I read is beyond my understanding, especially how one can remedy the lack of these enzymes. Is there a difference, I wonder, between malabsorption and a lack of these requisite enzymes? Anyone know anything about these cytochrome p450 enzymes? Thanks! (As an aside, I do think there's a definite correlation between 1. my perpetually low levels of D 2. my move to cloudy northwest England and 3. my deteriorating health!)

I have been diagnosed with neurally mediated hypotension (also known as neurocardiogenic syncope). I had a TTT and was told it was normal despite my starting BP being something like 79/45. Because my heart rate doesn't suddenly increase as I am tilted, it's not POTS. However, during a subsequent TTT they administered noradrenaline via IV for the latter part of the test, and when they tilted me everything utterly crashed (BP and HR). Apparently that reaction is indicative of NMH or NCS. I've got bad lightheadedness/dizziness, too, especially after any sort of mild exertion or just very mild excitement (literally just a phone call can set me off). I've also got very bad chronic fatigue. There is some speculation that chronic fatigue syndrome is associated with NMH, if I understand correctly. I hope this helps!!

I'm so sorry to hear you're going through this, Robert. I can really sympathize - just posted yesterday about my miserable visit to my now ex-GP who just wants to treat my "terrible depression" because that will apparently cure every physical woe I have. It is such a demoralizing feeling to have a doctor completely dismiss you like that. As much as you feel too tired, ill and discouraged to keep trying to find some help in the form of a decent doctor, there's good suggestions here and tons of support. One step at a time, I think. I really hope you find some help soon. Keep us posted.

Thanks so much to all of you, seriously! The email suggestion is very good, thanks. I'll look on the NHS websites to see if I can get email addresses. Maybe this sounds ridiculous (or maybe it's a comment on how useless this GP has been) but I don't have a specialist or consultant here in England. I was diagnosed in the States - I ended up paying a heck of a lot of money several years ago to visit docs at Johns Hopkins during a visit to my parents (in DC). The (now ex-) GP was not interested when I came back with a diagnosis of neurally mediated hypotension, and when I gave him a list of docs in England who specialize in dysautonomia, he refused to give me a referral, saying "well, you've already been diagnosed" and that I should exercise more. (Ok, I'm going to stop talking about him...) Anyways, I agree that I've got to just put this behind me and move on (am feeling better than I did last night). I worked this afternoon and asked a colleague for recommendations, who gave me a few names of local GPs, so i'll start making calls tomorrow to see if I'm in their area. (I live in a small town in the northwest, not far from Wigan.) Guess I've just got to do the leg work and see if I can find someone decent. Thanks again for the suggestions/support. It really helps!

I'm afraid this is just a bit of a rant... Went to see my GP today. I tend to avoid going b/c I felt like he's made it very clear that he doesn't think anything of my health issues. (He tends to say things like "you should take up swimming!" when I try to explain my problems.) My goal was to see if he would order any sort of tests for my increasingly painful left leg and arm, numb/tingling left foot, weakness in my left side... and so on. Long story short - he insisted I was terribly depressed and that would explain everything. I probably made it worse by saying, yes, I'm depressed; I'm familiar with depression. I tried to point out that it's highly unlikely that is what makes me so unsteady on my feet or causing what seems to be nerve pain in my left limbs, and that I felt we needed to rule out physiological problems; that I've been depressed in the past and that it didn't cause these weird neurological things... he said it wasn't helping that I was being "confrontational" and not giving him a chance and that he was willing to order some blood tests, but that "these things take time." After going back and forth - not shouting, but me trying to get him to acknowledge that just maybe the physical problems weren't caused by depression - he said maybe it was best if I find another doctor to look at matters through "fresh eyes." I calmly said, yes, I agree, and we shook hands and left. My husband came with me, and afterwards said the GP was being unreasonable and that I did the right thing - but that I probably shouldn't have acknowledged that I was depressed. Unfortunately, I've looked on the NHS site for GPs in our area, and the ones that get decent ratings aren't taking new patients. It takes weeks, if not months, to do the paperwork to switch - and then you may be stuck with someone who is worse than the last one. (This is my second GP, and the first one was actually worse than this guy.) Rant over. Just feeling so discouraged.

Thanks, Sue. I agree with you - leave no stone unturned in this search for answers!!

I completely agree with the other posts here. Why do psychiatrists find it difficult to believe that we may be depressed and anxious because we are so limited in our physical abilities?? And given how in recent years every other person I know has been diagnosed as bipolar (my niece, my brother in law, my sister in law, two friends, etc.), I'm really starting to be a bit cynical about it. Don't get me wrong - I'm sympathetic to their respective issues - but ALL of these people are now bipolar?? I also read something recently about how one of the symptoms in women of a heart attack is severe anxiety (apparently women's symptoms of heart attacks and heart disease tend to differ from those experienced by men). I'm not suggesting that you have heart disease or are having a heart attack(!), but it seems to follow that if a malfunctioning heart - a measurable physiological problem - can cause anxiety, then doesn't it follow that it's quite possible that POTS, which is obviously heart-related, can similarly cause anxiety, rather than the anxiety being caused by some psychological/emotional thing? Hope you find some answers soon. IMHO - time for a second opinion.

So sorry to hear about this new and exciting condition for you, but I wanted to commend you on your wry attitude toward the whole **** thing - a gypsy curse?? That cracked me up, thank you. Sometimes you just gotta laugh.... Seriously, hope you feel better soon.

I find this interesting... I moved to northwest England from the East Coast seven years ago, and just keep getting progressively more ill. I know that my most serious symptoms were brought on by a hysterectomy -- but I often feel that the abysmal weather here is making me ill. Unfortunately, where we live, it rains almost daily, and when it doesn't rain, it still tends to be overcast and windy. Gravity sounds like as good an explanation as any - I can completely relate to the feelings you describe. (It's so frustrating - I love it here and can't face the stress of thinking I must leave this life and move back to the States b/c of the freeking weather?!?)

Thanks Naomi - interesting that you have this symptom, too (we seem to share a number of symptoms). Oddly, you can see the motion of my head (my husband verifies it). The other day I made a (rare) excursion to the hairdresser and could see in the mirror that my head was gently nodding. Thanks, too, ESoskis - I'll do some homework and look into essential tremors. I suppose this may just end up in the list of "other weird symptoms that hopefully won't kill me."

I don't have POTS - I have neurally-mediated hypotension and pretty severe CFS. I have been going through a bad patch since mid-July, probably triggered by anxiety/stress (the source of which is still unresolved). Like with any flare, all of my usual symptoms, especially unremitting exhaustion and weakness, have been worse. However, one thing that is relatively new is almost-constant head bobbing in time with my heartbeat. I've had this before, but it only seemed to occur when I was especially tired or had overdone it. It's now almost constant (as I sit here typing, it's doing it). I've looked it up, and I think it's referred to as "De Musset's Sign." It's not an extreme motion; just a gentle bobbing of my head in synch with my heartbeat. I am able to stop it if I consciously hold my head still, but if I'm relaxed, it starts. I've said for ages that my heart "pounds" (not tachycardia - my HR rarely goes over 80 - but a feeling that my heart is really thumping in my chest). The heart pounding is especially bad when I'm lying down trying to sleep; of course, my head doesn't bob then! A bit more online research indicates that this can be a sign of aortic insufficiency or aortic regurgitation. However, I had an echocardiogram done last January that was supposedly normal. Is this yet another one of those "don't worry about it" things?? Any insight would be greatly appreciated.

Uggh, I've had that awful metallic taste thing, and it lasted for days!! I ended up on the Internet trying to figure it out, and did read that some people can have that reaction to eating pine nuts, of all things. Coincidentally, I had eaten pine nuts not that long before the metallic taste thing started, so maybe it was them. I've also heard it can be an allergic reaction - unfortunately, it's hard to figure out the culprit. Hope the nasty flare symptoms stop soon!

Thx, Naomi. I also agree with your point - that they need to do a long-term study on this. Maybe then they would have enough solid data to try to factor in the common effects of aging in order to determine whether this is a progressive sort of illness.

Futurehope makes a good point - that we are deteriorating naturally with age (depressing but true!). My personal feeling (just an opinion) is that while I have become much worse over time, the natural effects of aging have contributed to my general incapacity. In addition, I think that those natural aging effects (that everyone goes through) have been greatly exacerbated by this illness. In other words, but for the effects of aging, maybe my body could cope better and adjust to dysautonomia (as a young person's body might do), and but for the effects of dysautonomia, I suspect I wouldn't feel so susceptible to and affected by old age issues (like menopause, which is bringing on all sorts of problems for me). I hope this makes sense!

Sorry to throw more confusion into the mix... but I'm wondering why your doc felt it was unnecessary to do the second part of the test? In my limited experience, that's when they inject (via the IV) a synthetic adrenaline and then continue the tilt procedure. I had two TTTs. In the first, like you, I was told the results were "perfectly normal" (despite the fact that my initial supine BP was something like 79/45). They didn't do the adrenaline portion of the test. However, during a subsequent TTT at Johns Hopkins they did do the adrenaline administration. My BP and HR plummeted - I don't think I completely passed out but was pretty close. Based on that, I was told I don't have POTS, but I do have neurally mediated hypotension (NMH), which you also see referred to as neurocardiogenic syncope. It's another form of dysautonomia. My HR never increases significantly (as it would in POTS); instead, in response to certain stressors, my HR and BP drop inappropriately. I'm not sure why they felt your age meant you shouldn't be tested for this - the doctor at Johns Hopkins who was the expert on NMH is actually a pediatric cardiologist - Dr. Peter Rowe. It doesn't provide me with a huge number of answers, but I do find it helpful to at least have a starting point, instead of the frustration of yet another test that says I'm "perfectly normal!" I hope you can find some answers.

So glad for this forum (yet again)!!! Just the other day, I was feeling rotten and very sorry for myself after days of feeling rotten, and my husband was giving me a funny look and asked "well, what exactly do you feel like??" It didn't help that I was a mess when he asked, but I just kept saying, "It's just so hard to describe... I wish I could describe it..." Creepy-strokey-woozy-freaky does a pretty good job of it, as does seizurey . I also end up feeling very over-emotional and frustrated - like an angry toddler on the verge of tears.

I don't react well to steroids either. I tried taking Cortef a few years ago when I was exploring the possibility of "adrenal fatigue" and it made me feel dreadful, even in very small doses. I get this strange, buzzy pressure in my head, I feel slightly nauseous but still very hungry, and I feel irritable and almost panicky to the point of being tearful. It's a horrible feeling. I felt the same way on Fludrocortisone. In fact, it gave me what I was told was an "ocular migraine" - a small vibrating spot appears in your line of vision, and slowly grows until you can barely see. (I've had those before, but only rarely.) Just wish I knew why I have those reactions, when so many other people seem to benefit from those drugs!