targs66

Welcome to the forum, and thanks for your post - I'm interested in the results of your test. I've also got ME and what's been called neurally mediated hypotension, which I'm guessing is similar to postural neural hypotension(?) I had a standard stress test done almost two years ago during which my HR increased quite dramatically - but the max my BP went to was 120/80. Given that my BP is normally pretty low, that was a high BP for me, but the cardiologist said it should have been higher when I was on the treadmill and my HR was high. That explained to me why I'm so exercise intolerant - anything cardio, like just raking leaves or brisk walking, can make me dizzy and shaky v. fast. (I do daily Pilates-type exercises on the floor b/c I'm so desperate to avoid deconditioning!). However, I'm unfamiliar with the concept of moving from anaerobic to aerobic energy, and am curious to know what they find in your case. (I'm in the UK and have no access to tests like the one you describe.) Best of luck with the test, and please do let us know how it goes.

I have neurally mediated hypotension and chronic fatigue, so my experience may not be that helpful, but here's my 2 cents worth... I do find that doing even minimal amount of exercise can make me worse for days, like you said, but I was getting increasingly worried about my deconditioning. I felt like anything at all would help, so I just started doing what I can manage a few years ago, which was usually - literally- about five minutes of pilates type exercise lying down on the floor. This was several years ago, and I'm pretty religious about doing even a few (20) sit ups, some leg exercises and stretching every day. I tell myself - I can manage five minutes, and find it sometimes leads to 10 or even 20 minutes of exercise. I try to walk when I can, but it can definitely tip me over the edge into "now I need a few days to recover" if I overdo it. I guess my point is that I do what I feel I can do on the day and listen to my body - I feel like if I tried a prescribed regimen, it would not offer me that flexibility to "listen to my body" and stop when I need to. On the plus side, even tho I'm unfit from a cardiovascular point of view, I've definitely noticed improvement in strength and how much I can do! Good luck, and keep us posted!

I'm the same, Rich - I feel so much better during the summer. I don't have heat intolerance - spent some time in Maryland last summer and was outside gardening in 90+ degree heat. However, if it's 50-ish degrees, damp and windy (as it always seems to be here in northern England!), I'm chilled to the bone, nose streaming and utterly miserable. It really makes me think it's allergy or histamine related, and that whatever sets me off thrives in the damp and cool conditions but not in the heat!

When I was diagnosed with neurally mediated hypotension at Johns Hopkins, they gave me a copy of a report written (I think) by Dr. Peter Rowe? In it, he described some of the therapies they recommend for managing NMH. One of those is pseudoephedrine. Another was Ritalin - I think b/c it has the same vasoconstricting effects as pseudoephedrine. I think caffeine has the same effect, too, but am not entirely certain! I'm glad that you found it helpful, Vrias!

Thanks, Rich. I agree - it is a problem when you live so far north that you could sit outside most of the day and still not create vitamin D, even if the sun was out! Thanks for your efforts on this.

Interesting topic. I've moved from the States to the north of England -- and have never been so pale in my entire life, or felt so rotten! I know there's reasons for my illness that have nothing to do with low vitamin D levels, but I don't think it helps. Apparently there's very high levels of MS in Scotland, and again the theory is that it's connected with the lack of sunshine. p.s. I take virtually no vitamin D supplements but that answer wasn't available on the poll. I try to eat lots of vitamin D rich foods, as I don't tolerate the supplements well at all.

I find this interesting because I seem to be hypersensitive to anything in the steroid family - I've had bad reactions to Cortef, predisolone, Florinef and even just hydrocortisone applied topically. I also seem to have the same kind of reaction to thyroid medications. It's an awful wired but tired, shaky, super-emotional (on the verge of tears), buzzy, nauseous but hungry feeling. I don't have the skin reactions that others have described, though. No one's been able to explain this - I get the "no, those meds won't cause that" reaction (or worse, the "I'm dealing with a crazy lady here") from most doctors, even though this reaction is incredibly consistent!

Good luck with the tests at Vandy. (I applied as a volunteer some time ago, but didn't get a response, maybe b/c I have neurally mediated hypotension, not POTS.) Please do update us with your experience and results!

Thanks for posting this - food for thought!

My neurally mediated hypotension happened after my hysterectomy. However, I had health problems for years prior to the surgery; was told it was chronic fatigue syndrome. Pre-surgery, I could work a demanding job (barely, but I could do it). I also was able to exercise, tho not intensely. I now find it a major undertaking (and some days impossible) to go to the grocery store. I had ovarian cysts, severe endometriosis and fibroids, so they took everything. I don't think it was the anesthesia that brought on my problems because I healed and recuperated very quickly. I just kept feeling increasingly weak and dizzy. It was about a year after my surgery that I started feeling the wooziness and weakness that is so devastating. I'm convinced it's an ongoing hormone imbalance - even though I take estrogen and don't have hot flashes, I have many other problems associated with menopause. I think the sudden onset of menopause just threw my entire endocrine system out of whack. I've tried different kinds and combinations of HRT without any improvement. In retrospect, if I had the choice now, I'd keep my ovaries to avoid the sudden menopause - but it's all speculation! I'm not saying this to convince you not to have surgery, just to provide one more person's experience! I know there are a lot of women who feel much better after hysterectomy. Best of luck, and keep us posted.

Thanks for posting this. I have a prescription for Mestinon, but still haven't gotten around to trying it. Brain fog is one of my worst problems, so if it helps even a little, I'd be thrilled! Will try it again and post the results.

I've taken (and stopped taking) SSRIs over the years with similar results. I remember when I started taking Zoloft I felt like I could barely carry on a conversation b/c I was so spacey. However, that effect did subside quite a bit - although not entirely - and the reduction in anxiety was great. I eventually stopped taking it b/c the spacey feeling ended up too difficult for me to work around (at the time, I was getting my degree, too). I've also taken Prozac, Paxil and Wellbutrin (I think the latter's not a SSRI) with the same effects. It ends up being a toss-up for me: it's so great to have some of my endless anxiety and depression alleviated, but on a day to day basis, it's such a struggle to overcome the spacey, dopey feeling. I never had any issues when I stopped taking them, other than the return of increased depression/anxiety feelings. Maybe it's worth sticking with it for just another week or so and then making the decision whether to taper off? Since you haven't taken it for a long time, it seems like you shouldn't have problems if/when you do decide to stop. It's just a suggestion; I can understand your concerns after your Xanax experience. Good luck with whatever you decide! Keep us posted.

Just finished off a delish cup of miso broth I agree that sometimes our bodies "tell" us what we need. I've been told to drink salt water and I like the taste, but have found that other people think that's revolting. I don't think I go 'waaay overboard on the salt, but sometimes worry that it's not great (even with my very low BP) to consume a lot of salt. Seems to be a lot of mixed messages about it these days.

Please let us know how the appointment goes - best of luck!

Found it! I think there was a similar article in the New York Times: http://www.bbc.co.uk/news/health-25777978

As a chronic night owl (and someone who feels wretched in the morning), I've been reading with interest some articles I've seen lately about how some doctors now theorize that people are either "owls" or "larks" by nature and that it's very hard to change.... I've always struggled with mornings/daytime, even when I worked office hours for years - my body never adjusted. In one article, it said that this can make you essentially jet-lagged all the time, but unfortunately, there was no suggestion that they could cure this. I once did a self-administered saliva test for cortisol levels (you take saliva samples at 8 am, noon, 4 pm and midnight). No suprise there - my cortisol was low at 8 am, lower at noon, a bit better at 4 pm and highest at midnight. It finally explained, to some extent, why I feel so worn during the day. My blood pressure follows the same pattern - very low upon waking and throughout the day and improving toward bedtime. Hope you can find some answers!

I can so relate! After just a few minutes of any kind of exertion that raises my heart rate, my muscles stop working and I'm stumbling and woozy like I ran a marathon. I never know whether to attribute that to some sort of neurological problem, or just my weird blood pressure issues (I have neurally mediated hypotension, not POTS). I had an exercise stress test last year. As the difficulty increased, my heart rate increased as predicted -- but my blood pressure didn't respond. At the point of highest exertion, my blood pressure only got up to 123/80. I could barely stumble the three or four steps from the treadmill to the examining table. I've never been diagnosed with any neurological condition (despite a strong family history of MS), so I've speculated that if my muscles and brain aren't getting the oxygen they need when I exert myself, maybe that's going to manifest itself with ataxia and coordination problems - ? (I haven't ruled out the possibility of neurological issues, but am trying to keep an open mind to both possibilities.)

Ah - that's interesting. I don't know if I've got the "inappropriate sinus tachycardia" but certainly have OH. I do hope they include other dysautonomias in future studies! Thanks, Naomi!

Oops - sorry about that! Thanks for letting me know.

Thanks for posting - I'll be watching this with interest. I wonder, though, if these findings only apply to POTS, or also to those of us with related conditions like NMH or NCS? I've had chronic fatigue for years, with increasing OI issues, and it developed into NMH in recent years. I'm supposedly "borderline" POTS-y but the NMH and CFS are my main problems. Hope the research addresses these issues. I'd be interested in volunteering for future studies - if any of you plugged-in smart cookies hear that they are recruiting, I'd be very grateful if you post info! (I did follow the links in the DI article to register with various networks and will do so.) Thanks again!

Someone once told me that ice is very helpful if you have inflammation, and that heat makes inflammation work. I've tried ice on a sore back and it did feel much better than heat. However, I really don't know how one determines whether their pain is the result of inflammation?!

My sleep is terrible - I lie in bed with my heart pounding and feeling short of breath. If I take my BP while supine while feeling that way it's generally very low (around 78/55) but if I get up, it's higher than normal for me (as high as 98/65). I do have the head of my bed elevated and I feel like I need at least three pillows or I feel even more short of breath. My deepest sleep seems to be from about 6 am to 10 or 11 am, but I wake up exhausted. I've never had a sleep study done. BTW, I have neurally mediated hypotension, not NCS (I am dizzy/woozy all the time but never actually pass out). Hope you can find some answers!

Thanks, Freaked - I haven't tried passionflower, but will keep it in mind as one to try. Becia - like you, I find even watching sports on TV can "mess me up" if I care about the outcome! It's such a drag.

I've got the same symptoms and would love to know how people handle them! I realized the other day that I avoid situations that make me laugh b/c it sets me off. How tragic is that!?! It's the same as you both said - if I'm with friends who are animated, I've got to sort of withdraw a bit and sit quietly, or I'll be very symptomatic. Unfortunately, magnesium isn't great for me even at low doses. I'm trying to find something that keeps me "calm" without being too sedating, as debilitating fatigue is one of my worst symptoms.

Thanks, Sue -- that's a good description of how I feel too, especially the "surreal" head feeling. Jennn - glad you mentioned the magnesium -- I think I read something similar and meant to try taking it with vitamin D. (Inevitably, I do get some side effects from magnesium, too, but not as bad as the vitamin D!) Thanks for the explanation of the article, Katybug.