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targs66

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Everything posted by targs66

  1. I also have an awful reaction to Vitamin D. I've tried at least six different formulations, with the same ill effects, so I don't think it's fillers or anything other than the vitamin D itself. But I don't know if it is a mast cell-related reaction. I end up feeling extremely weak and physically exhausted, with burning muscle pain (like the type you get when you are coming down with a fever/flu). I also feel like my head is "buzzing" in a really disturbing way. Lotsa fun! No one has been able to explain this to me. The only thing I've been able to find about vitamin D intolerance is that it can be related to hyperparathyroidism, but I've never had a blood test that would indicate that I'm hyperparathyroid, so I really don't understand it. I don't have a scientific background and don't quite understand the results of the study in the article: are the results suggesting that yes, vitamin D can cause a mast cell reaction?
  2. Thanks very much, Rich. Now if they could just find a way to cure this darn thing ....
  3. Thanks for this, Rich. We need more people like you who may be able to get us to the root cause of this thing... I know most of the people on here have POTS, but I'm one who doesn't - during my TTT, my increase in heart rate was just below the criteria for POTS, but I tested a strong positive for neurally meditated hypotension (or neurocardiogenic syncope). Any thoughts on whether the above theories would also apply to us non-POTS dysautonomia people? thanks!
  4. hi Andy, While I don't have any answers for you, I thought the following might be useful ... I have many symptoms that are very similar to yours, especially the hyper-sensitivity to any kind of stimulus. One big difference, however, is that I suffer terribly from brain fog and unrelenting utter exhaustion (have been told I have chronic fatigue for years). I have almost given up finding a concrete diagnosis (I don't find "chronic fatigue" an adequate diagnosis, given the vast differences among CFS patients), and instead focus on finding how to manage my own symptoms. It's so frustrating, I know - I just feel like if someone could please just figure out what's wrong with me, then maybe I could be cured. But I am almost at the point where I don't think there's going to be a diagnosis, at least not anytime soon, and instead, I need to take over my illness and figure out what works for me. This forum is hugely useful in that respect; like you, I don't have typical MCAS symptoms, and yet have found that very small doses of an antihistamine called acrivastine that is quite helpful for me. I only found that by asking a million questions and reading as much as I could here. My point (in an inarticulate way) is that hopefully you won't get too discouraged if you don't get actual diagnostic answers b/c maybe along the way you will find things that are helpful to you despite a lack of answers as to what your illness actually is. I hope that helps!! Best of luck.
  5. hi - I hope this doesn't add to the confusion, but my understanding is that NCS is the same as neurally mediated hypotension (NMH). The doc at Johns Hopkins who diagnosed me with NMH said they prefer calling it NMH because "not everyone with this condition has syncope (faints)." That's true for me - I never actually pass out, tho I can feel utterly woozy and semi-conscious at times. They said I was "borderline" as far as a POTS diagnosis - my heart rate didn't go high enough during the TTT. That being said, I agree with you (and disagree with your doctor) - I feel lousy most of the time regardless of my BP. My biggest complaint is overwhelming chronic fatigue. It seems like (and this is purely my own observation) that people here who have NCS/NMH are more likely to have chronic fatigue issues than people who have POTS (but I could be wrong on that!). Like you, my BP is variable, but I can feel very bad even on days that my BP is low/normal (say, 95/64) - this suggests to me that there's something else making me ill and the NMH is just a side effect of that. Hopefully this helps!
  6. I was diagnosed with neurally mediated hypotension. My understanding is that it's the same as NCS but the docs at Johns Hopkins called it NMH because not everyone actually faints (hence the "hypotension" rather than "syncope"). I've had what's been called chronic fatigue syndrome (or myalgic encephalomyelitis in the UK) for many years, which has become progressively worse. My biggest problem is the overwhelming, devasting fatigue that I feel all the time. My personal theory - and it's just a theory!! - is that my NMH is secondary to whatever is causing my chronic fatigue. In other words, I feel like the blood pressure issues are caused by whatever is making me ill enough to have chronic fatigue, and if the chronic fatigue was sorted, I feel like the blood pressure issues would be resolved. I especially feel that's true because there are times when I can feel so utterly incapacitated and rotten -- and my BP is a reasonable 94/65 or the like. So while I do a few things to "look after" my low and fluctuating BP - keep hydrated, sit when necessary, consume lots of salt - it's not my biggest concern. Weirdly enough - I can tolerate the heat pretty well, but cold just devastates me. I've been visiting D.C. -- and as ridiculous as this sounds, the heat has felt good. Hope you can find some answers! Keep us posted.
  7. I'm also ridiculously oversensitive to medications. I take 1/4 or even 1/8 of the recommended dose of anything new so that I can gauge my reaction. I did this with midodrine and did okay. I did have some of the weird side effects (like chills) but they were very bearable. My only problem with it was that after a few hours of feeling quite energized, I felt really, really tired, like I had overdone it. I stopped taking it for that reason: almost felt like I was making myself too wiped out by the initial energized reaction. I'd say that's the same effect I get from too much caffeine, but the nice thing about midodrine is that it does leave your system quite fast. I'd suggest trying a very, very low dose and see how you do. Good luck!
  8. I had an exercise stress test, and my HR increased normally but I had a "flat blood pressure response starting at 96/60 and peaking to 123/80." (That's from the echo report.) The report also said this was "due to dysautonomia not allowing her to elevate her blood pressure due to poor vascular resistance." It made so much sense to me b/c if I even mildly exert myself - walking, raking the lawn, housework - I end up feeling completely shaky and woozy very quickly. I don't attribute that to deconditioning: while I'm not in good shape, it's not a feeling that my muscles are exhausted, just that I'm not getting enough blood to my brain. (I have neurally mediated hypotension and severe CFS, not POTS, FWIW.) Sorry, I know that's not much info for you, but thought maybe the statement about "poor vascular resistance" might be of interest to you. I'm curious to see what your doc says - keep us posted! I'll be seriously impressed if you really had a BP of 40/20 and managed to stay conscious!!!
  9. Interesting that you say that about your eyes being dried out: the last time I had an evaluation, the nurse put one of those paper "dip stick" things in my eye to test my tear production. After sitting there with my eyes closed (and the paper sticking out of the corner of my eye) for about 5 minutes, she looked at it and said "According to this, you have no tears. None." I don't know if it's the minimal amount of acrivastine that I take that's doing that! Short of constantly putting re-wetting drops in your eyes, I'm not sure what you can do about it! Thanks again for your info, and I'll look forward to your next post!
  10. Sorry, I don't have answers either, but am curious to see if anyone can lend any insight to your questions. I'd be very grateful to know what you find out when your blood work results come back - ? I've never heard anything about a MCAD - mito connection - interesting. I have bad reactions to most antihistimines, too - they all just make my "wooziness" much worse. However, I can take very tiny doses of something called acrivastine, and it seems to help with some of my symptoms, esp. fatigue. In the UK, it's sold as "Benedryl Allergy" and doesn't have anything else in it. It's in capsules, so it's easy to open them up and just take a small amount of the powder. However, I think acrivastine is only sold in the US by prescription and with added ephedrine(?). I find that odd because I find it has a definite stimulating effect on me - but I always react weirdly to meds!! Good luck - do keep us posted. -Shel
  11. Amazing - I had no idea that so many people (well, women anyways! ) had problems post-hysterectomy. It's not like I was healthy b/4 my total hysterectomy in 2007, but I went from being a very tired person who still could work full time, ride horses, socialize, etc. to barely able to manage a trip to the grocery store most days. At least I WASN'T DIZZY back then I don't think it was just the surgery that did it, to be honest - I think it was the hormonal change. That also makes sense to me given how many women have dysautonomia problems around menopause. I've struggled with HRT - I'm definitely of the "can't live with it, can't live w/out it" variety. I'd like to stop taking it but the unbelievable anxiety, depression and insomnia are unbearable. I'm just so hoping that I can find some sort of "balance" again....
  12. I was diagnosed with neurally mediated hypotension at Johns Hopkins a few years ago. I believe it is the same thing as NCS, and that the researchers at Hopkins wanted to call it something different, without the "syncope" part of the name, b/c not all patients actually faint. It's really frustrating - there's even fewer docs who have heard of NMH or NCS than there are who are familiar with POTS. I have a long-term history of extreme fatigue, and have been told I have CFS/ME for years - but I was pretty functional. I believe this NMH was brought on by surgery a few years ago. The brain fog and "wooziness" are my most problematic symptoms. I don't know if the NMH is just another symptom of my chronic fatigue, which has gotten progressively worse. However, I do think people get better. It might not be a matter of finding a "cure" as much as finding a way to manage symptoms and avoid triggers. You've come to the right place: this forum is a wealth of information!! Good luck, and keep us posted.
  13. I've often wondered about the benefits of nicotine for those of us with unrelenting OI! I agree that smoking is too dangerous a "delivery" system, but wondered if the patch or nicotine gum would provide the benefits with fewer of the damaging side effects. It's not something I've tried, but it's an interesting topic...
  14. My mom has had back/spine issues for years, including a bulging disc (I'm not sure whether it was herniated) that has given her significant weakness in one leg. She has no reflex response in that leg. She was told it's due to the disc/nerve damage. Not much info, but I hope it helps a bit!
  15. Sounds like an interesting study. If there's one being done on patients who are older than the 14-29 criteria, I'd love to hear about it....
  16. hi Libby, First, sorry about your experience with a useless doc. So frustrating. I was going to say the same thing as Sue -- I barely know anything about it, but just read with interest the info on parathyroid.com, which suggests that anyone with high calcium and a range of symptoms that may include yours (esp. the fatigue) should have their parathyroid hormone levels checked. According to this site, anyone whose calcium is high and PTH is high probably is hyperparathyroid, which may be due to a parathyroid tumor (benign) which should be resolved. I'm sure with your science background it will make sense to you!! Keep us posted.
  17. Thanks, AllAboutPeace -- you've summarized what I couldn't - that weird, "super-off" feeling with the fogginess in your head and neck. I just find myself slumped in a chair feeling mildly nauseous, extremely weak but with a sort of teeth-gritting "buzziness" in my head. Lots of fun.
  18. I am one of the people who can't tolerate vitamin D, although it's not entirely clear to me why. I feel okay for the first few days, maybe even a week, that I'm taking it, and then start feeling unwell and end up feeling awful until I stop taking it, even at very very low doses. That sequence has happened to me at least three different times, each time with different brands/formulations of vitamin D. I really can't figure out why, but read some very interesting things about hyperparathyroidism and how calcium/vitamin D supplements can be extremely problematic if you are hyperparathyroid (see www.parathyroid.com). Unfortunately, I haven't come up with any answers (yet!) for my own vit. D intolerance, as thus far, there's no indication that I am hyperparathyroid, but it might be worth a look for anyone who finds they're intolerant of vitamin D. I hope you can find some answers!
  19. Interesting that you asked about Paxil - I'm hoping people chime in! I used to take a small amount (maybe 3 mg?) in the afternoon about 7 years ago, but I was in much better health then. I think it helped with depression, anxiety and sleep. I was also taking a low dose of Wellbutrin (can't remember dosage). I can't say that I noticed side effects back then. However, I just started taking a very small amount about 3-1/2 weeks ago. I break the tablets into tiny bits b/c I am ridiculously hypersensitive to meds. The good news - my mood really does seem a bit "brighter." I feel less anxious, and a bit more hopeful about my future. The downside - I am so spacey!! I'm normally frustrated with my cognitive function, so this is not good: can't remember phone numbers that I've known by heart for YEARS, keep messing up dates (thinking an appt is on a Tuesday instead of Wednesday AFTER checking the calendar, thinking something is three weeks away when it's two - again after looking at the calendar), absolutely couldn't follow simple driving directions that someone gave me, etc. The list goes on. I know these are things that we all do, but I've done about six spacey things that are uncharacteristic for me in the last few weeks. I'm frustrated -- I can't face being less functional than I already am.... Finally, I'm surprised that I seem to have more appetite, especially for sweets. My experience with anti-depressants has been the opposite - I tend to get less hungry, not more. My appetite is not out of control, but not very pleasant. I may have to explore other anti-anxiety options, if all this continues. Would love to hear others' input....
  20. I'm glad you found some answers, Soap. I've learned something too, from the link that Tuesday posted about "scintillating scotomas." The depictions on the Wikipedia page, especially the moving ones at the bottom, are exactly what I get. Once again, I'm grateful for the wealth of info on Dinet
  21. hi Sophie, I've had those episodes, too, and was told they are "ocular migraines." They are not much fun! I believe that, like regular migraines, they are brought on by certain "triggers" that may be different for each individual. I'm not sure what my triggers are but think that one is taking any sort of steroid... Florinef brought them on for me. I've never been told what to do about them; like you, I just have to lie down until the episode passes. I'm afraid that's not much info, sorry, but if you Google ocular migraines you may be able to find out more. Hope that helps! Shelly
  22. hi Allotmenteer, just wanted to say welcome! I'm American but live in northwest England (currently in the States visiting family). I have had the same experience as you: I have yet to meet a GP who's even heard of dysautonomia, let alone neurally mediated hypotension. However, I've just recently switched to a new GP and surgery, and tho they haven't heard of these conditions, they are quite willing to at least acknowledge and learn. It makes all the difference in the world! Unfortunately, I am not familiar with immunotherapy or thyroiditis. I hope you find some answers here. Welcome to the forum.
  23. I'm like you, Sarah, in that I used to be so relaxed about things. An ex-boyfriend (from about 20 years ago) recently said to me something about how he remembered me as "completely fearless." It makes me so sad - I was able to pack up and move myself from Boston to Austin, TX - alone - because I wanted to go to a university that was somewhere warm! Now I stress - really stress - if I know I have to go to the grocery store tomorrow. My theory is that the anxiety is twofold: 1) something about this condition is releasing whatever it is that makes humans feel anxious (adrenaline? cortisol? or maybe a shortage of something?), and because I feel desperately PHYSICALLY anxious, I have to "pin" that anxiety onto something, even if it's irrational, like a trip to the grocery store. and 2) this condition makes us feel debilitated and incapable, and that is anxiety-provoking - "if I go to the store, I might have to park far away and I'll be very dizzy in the parking lot," etc. I recognize that these theories may not be scientifically sound, but it helps me to deal with the anxiety by treating it as a separate side effect that needs to be ignored to the extent possible, rather than a warning sign that must be acknowledged. I know that's really difficult to do when you're anxious about what appear to be life-threatening conditions - and believe me, I can relate to that sort of fear- but sometimes I do find the anxiety is lessened by just treating it as yet another side effect. In other words, I can tell myself - "yes, my anxiety is screaming at me telling me there's something desperately wrong, but that's a side effect of this illness and not an actual indication that something terrible is happening, so I should ignore it if possible." I hope that makes some sense!
  24. I am in the "take a tiny bit and see what happens" camp - I hope that's not bad advice!! I have taken Propranolol and find it really useful in certain circumstances - when I am in that almost frantic, overstimulated, verge-of-tears mode. My BP runs too low to take it regularly - I just can't function at all when it's 85/55. However, if I've overdone it, and am exhausted and unable to turn off the racy, jittery feelings, I can take a tiny crumb - less than 1/4 of a pill - and it really feels very soothing. One problem, though, is that it can interfere with sleep (which seems counterintuitive because it seems to have a calming effect), so you might want to keep that in mind. Good luck, and keep us posted.
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