targs66

I have neurally mediated hypotension. To be honest, I've never completely understood if that's the same thing as NCS, or whether it's in its own category!

Thanks, Potsgirl93. I know what you mean - when you talk about the losing your train of thought, everyone says "Oh, I do that!" but it's so much more than that. It's not just the train of thought that's gone, it's like you go momentarily unconscious!!

I hope you are okay - it sounds like you are going through an awful time.

hi Debra, Just to confuse matters, my body seems to react the opposite to yours! I take estrogen before bed because it helps me sleep, but I know I've taken too much when I get the following symptoms: - waves of vertigo/dizziness - very groggy and brainfoggy - I feel like I've been sedated - very low BP and temperature (both run low normally for me) - extreme weakness - I feel like I can't walk across the room - nauseous Given that, it seems that it would make sense for me to stop taking it altogether, but when I've tried to wean off it my anxiety, depression, irritability and insomnia go through the roof. Worst of all, I can't sleep - when I finally doze off, I'm woken up literally 15 - 20 minutes later by what feels like a massive anxiety attack. My heart feels like it's pounding, even if it's not going that fast, and I get mild asthma attacks. That lasts for about 40 minutes; I barely doze off again -- and then it starts all over. The "hot" part of the hotflashes (if that is what they are) is the least of the problems (I'm always freezing anyways) - it's all those other symptoms. I get so anxious that i think I'm dying, even though I can logically understand that it's just a panic attack. Add a sleepless night like that to my utter exhaustion, and it's living ****. Hence my continued attempts to balance my hormones with HRT - I really think my body needs to gradually wean off hormones over the course of many years like it would naturally (I am in sudden menopause b/c I had a total hysterectomy about 3 years ago). I've tried bio-HRT, but it's no better. I'm going to see if estriol works for me - maybe the estradiol is too much? (Thanks Issie for your info!) I feel like I'm in a "****** if I do, ****** if I don't" cycle...

I struggle with this feeling all the time. Concentrating is so difficult, even on very simple things. No one can understand why I don't want to talk on the phone -- it is too difficult! Typing/computer work is a bit easier because I can periodically "space out", but I hate talking to people because I get that floating/soaring down feelign and realize I have no idea what we were talking about (and then the strange look from whomever I was speaking too as I struggle to regain my thoughts). It's made me very anti-social and lonely. It is the worst symptom for me. I am afraid to go shopping / anywhere public because I feel like I have these mini-blackouts. I have never actually fallen down or fainted, and i don't get tachycardia, so I don't think it's a blood pressure plunge. (I've had TTTs and they found I have neurally mediated hypotension - my heart rate never actually gets very high.) It prevents me from doing so much. If I do anything, I'm constantly fighting these "drop outs" (they feel like the opposite of a "surge" of something). Sorry to go on about it - but what is this??????

Like Naomi said, my good/bad periods last several days. I might be doing okay for a few days, then really crash for weeks.

The weather change has been really hard on me. I was so encouraged - I had a decent summer and was doing more than I've done in a while - but I have been feeling utterly awful for the last few weeks. I live in England, and the damp cold just kills me (unlike the hardy folk here who run around in 58 degrees in t-shirts and skirts!). My temperature always runs on the low side, and I get chilled so quickly - and then can't warm up for ages (I can lie covered in blankets on a heated blanket with hands, feet and legs like ice). I know how most of us here are heat-intolerant rather than cold-intolerant. I'm still not sure whether I'm just plain intolerant, and whether I would suffer as much in the heat as I do in the cold. I did spend a month in June at my parents' house in Washington, DC, and actually felt pretty good, so I don't think so. Sigh - another unanswerable question....

hi all - Thanks for the info, Issie. I had the same problem with progesterone - seems to make my menopausal symptoms worse. After reading up on it, my (probably over-simplistic) understanding is that with some people your system can only process the progesterone, which it does at the expense of the estrogen. Therefore, the more progesterone you take, the fewer benefits (e.g., preventing hot flashes, etc.) you get from the estrogen. I believe it's got to do with the HPA axis, but it's well beyond my understanding. I've always wondered if that's one of hte connections to dysautonomia - I think all those crucial hormones (the sex hormones, as well as the thyroid ones, and cortisol, etc.) are not being "processed" by my body correctly. I've tried thyroid and cortisol medications of every description, and those seem to be the ones that make me the most ill. Sending you a PM - I'd like to know the name of your doc. thanks.

Thanks for the tips, Issie. I've tried the tea tree oil w/out success but haven't tried clorox. Will give it a go. I'll be watching this discussion with interest - am curious as to whether systemic fungal problems can cause/add to our problems.

Funny coincidence - I've recently become interested in the fungus connection. I just went to my GP for problems relating to a fungus-y toenail which has become infected. My GP gave me an Rx for antibiotics (flucloxacillin) and when those are done, I'm supposed to take an Rx for Terbinafine (which is generic Lamisil, I think). I read about side effects of the terbinafine/lamisil, and I am really scared of taking it -- it sounds like otherwise healthy people ended up very very ill! The site I found allowed people to post their own experiences taking various drugs. Even if their liver enzymes were normal, the symptoms they describe sound like mine on a bad day - dizziness, chronic fatigue, shakiness, terrible brain fog, weakness, etc. Plus there were all sorts of other weird things they experienced like hair loss and skin sores. I hate to not take it if it could possibly help me -- but am so afraid of making myself worse. Has anyone ever taken an antifungal medication? thanks!

Unfortunately, I can't really help with your technical questions, but just wanted to say I seem to react the same way that you do to meds. I take very low doses of estrogen b/c I had a total hysterectomy at age 46 (about 3 years ago). Many of my worst symptoms started after the hysterectomy. I've tried to "balance" the estrogen with progesterone, and found that I couldn't sleep and was very "weepy" and depressed. I've also tried to stop taking the estrogen, but the depression, anxiety and sleeplessness are devastating. I do think there's health benefits from the estrogen, especially b/c I was pre-menopausal when I had my hysterectomy, but sometimes think my body doesn't utilize itcorrectly. I'm sorry - that doesn't offer any answers - but just wanted to say I could relate to your problems!

I'm another one that can't tolerate most supplements. I really wish there was some explanation. Like another poster here, Vitamin D and co-q10 make me feel AWFUL. I've tried just about everything, and tried introducing them in small doses and then very gradually "ramping" up -- but most make me feel very ill. The ones that really should help - B vitamins, vitamin D, co-q10, magnesium, vit. C, ribose, thyroid meds (synthetic, natural, T3 only, etc.) - all are intolerable. I feel like that should be a clue as to our conditions, but so far, no answers.... doctors don't tend to believe me.

I have to say that I've tried just about everything (Co-Q10, ribose, iron, licorice, antioxidents, vit. D, magnesium, B12 [injections and pills], evening primrose oil, flaxseeds and flaxseed oil, glutathione, and so on) and nothing has given me any improvement. (I went on Dr. Myhill's protocol two years ago and, while I think she's a great doctor and has helped many patients, I felt utterly awful and had to stop after a few months.) I often have very negative reactions to things that should make me feel better. I've tried taking them in very small amounts and ramping up the dose, I've tried taking each one on its own so that I'm not confused by my reactions to them, and have had very little luck. At best, I'm just glad when I can take something that doesn't make me feel worse. I sometimes think I have a hyper-immune response to meds, vitamins, herbs, etc., and that's why they make me feel bad. I've spent so much money on these things, and time and again have been disappointed. I'm not posting this to be negative! I'm NOT saying that supplements are worthless; obviously, they help a lot of people and that's fantastic. Just that they don't work for everyone, and if so, you're not alone. I'm just posting this because I think that the benefit of this forum is that everyone's experiences are represented.

My weight has been pretty constant for the past 15 years, during which my chronic fatigue has gotten worse and worse. After the onset of my neurally mediated hypotension, I've lost about 10-12 pounds over the course of about a year. That's odd for me - I have to watch what I eat in order to not gain weight. I don't have serious GI issues, but really don't feel well if I eat a big heavy meal or a lot of sweets. However, I wonder how much of this recent weight loss is just due to depression: I go through periods where I don't think I'll ever get any better and I get very depressed and don't eat much.

I've had one TTT that included an injection and one that didn't. I had a TTT done here in the UK (I'm American but live in England), and there were no injections, just the usual monitoring of BP and heart rate while I was slowly tilted up and back down. Despite the fact that my initial BP (lying flat) was 79/48, the results were deemed "normal" because my body responded "normally" to the tilting: that is, my BP and HR went up slightly (99/68; 79 bpm) as I was tilted upright, but I didn't have the sudden jump in heart rate that POTS patients have. (Nevermind the fact that I felt like I was passing out and the extremely low BP at the outset - as far as they were concerned I was fine.) However, when I was tested at Johns Hopkins in the US, they did the same thing as above for about 30 minutes with the same results (consistently low BP but no dramatic response), but then injected me with a synthetic adrenaline while I was still lying flat, and then tilted me. My heart rate jumped up to 110 bpm in response to the adrenaline, and when they tilted me upright my BP plummeted to 60/40. (I was almost unconscious at that point; don't remember much other than thinking I really hope I don't wet myself!!) Apparently this is indicative of a condition called neurally mediated hypotension, which is a dysautonomia but different from POTS. Anyways - long story short, I would check with your docs as to whether your TTT will involve an injection. The benefit of the version with the adrenaline injection (although it's not much fun at all) is that I finally had a diagnosis, even if it's a condition they don't know much about. I hope that helps a bit.

I don't have a specific answer, but thought I'd pipe in b/c I have such a problem with sensitivity to medications!!! I don't remember when it started, but even vitamins can make me feel wretched. Unfortunately, it's often the ones that I think I could benefit from: vitamin D, the B vitamins, magnesium, Co-Q10, and so on. No one has ever been able to offer any reason for this. When I do take meds, I take TINY bits. However, I haven't found that I'm sensitive to perfume, the usual allergens (animals, grass, etc.), cleaning products - so this doesn't make much sense. I sometimes wonder if it's a hyper-immune reaction. I have found that when I'm feeling a bit better my body doesn't seem to react as much. I hope you find some answers. Do you have any theories as to why you're not as sensitive now?

Mine is consistently pretty low, but the weird thing is that it depends on what time of day it is! In the mornings, it's usually about 88/60, but by early evening, it's as high as 96/64. Needless to say, I've always been a "night owl" but it only became apparent to me why that was when I realized I had BP issues. I don't have POTS, but have neurally mediated hypotension.

hi Naomi, It does help with the dizzy/weak feeling, but only to a point. On the plus side, I've been doing quite a bit lately -I'm on a sort of holiday in the States right now, housesitting at my brother's. I've managed to walk the dog almost daily, and have done a bit of visiting with friends. Both those type of things are usually incredibly taxing; if I do manage either, I normally am demolished for at least a few days. However, just like everything else, there comes a point where I'm in "flogging a dead horse" mode (if you'll excuse an awful expression): I get bone-tired and confused and taking more Benadryl doesn't help. STill, I am so pleased that I've been able to do this much. It's a bit different than a simple stimulant; I've tried Ritalin, for example, and while it does give me energy, it's a buzzy, teeth-gritty sort of feeling from which I have to recuperate. This stuff just seems to make me feel closer to normal. all the best.

I seem to remember that there is a test for "adrenal fatigue" that involves checking whether the pupils constrict and stay constricted in response to bright light. If you Google adrenal fatigue test, I think it should come up. However, I believe that adrenal fatigue (like so many other things) is a bit of a quagmire. I've heard some docs discount it entirely (surprise!), while others seem to get real improvemnt by "supporting" their adrenals by taking cortisol. (I tried it; inevitably, the cortisol made me feel absolutely horrific any way I tried it.) I hope you find some answers. Edit: Sigh - I'm adding this after reading some other posts - obviously there are some adrenal experts on here! I hope I didn't sound too idiotic!

hi all - I thought I should start a new topic here even though this is related to my earlier post about Benadryl making me feel better.... Just found out yesterday, due to the sharp eyes of a friend, that the "Benadryl" that I've been taking in tiny amounts is a product available in the UK called "Benadryl allergy relief." Its only active ingredient is 8 mg. acrivastine, a second generation H1 antihistamine. Apparently that's far less sedating than the usual ingredient of Benadryl - diphenhydramine. Well, this certainly explains why it wasn't helping me to sleep!!! However, it doesn't explain why it makes me feel so perky for a short time, so I'm continuing to wait for my doctor's response after a recent visit (see my earlier post if you're interested). I've done a bit of online research, and my understanding is that acrivastine is only sold in the US under the name "Semprex D", but that also contains pseudoephidrine. I've sent an email to my doc and will post when he responds. -Shelly

hi Casper - Thanks for your response - I don't know the specifics about the differences between MCAD and mastocytosis, but my understanding is that it is possible to test negative for mastocytosis even if you have another mast cell disorder. Like you, I'm trying to learn all I can! I hope you find a decent doctor, too. to everyone - I just found out something new about the Benadryl I'm taking, but I'm going to start a new post because I think it's quite significant.

hi Julie - Thanks so much for the "poking around!!" I really appreciate it. I wondered myself whether there would actually be a mast cell doc at Hopkins. I'm a bit worried that my doc will lose interest if he can't send me to another Hopkins doc who really specializes in this area. (My doc is great, and never dismissive, but has got a somewhat short attention span(!)) I'll suggest that he get in touch with Dr. Adkinson. And if there's no one at Hopkins, I'll happily look elsewhere, so thanks too for your suggestion about Dr. Schultz. Will keep you all posted. All the best, Targs (Shelly)

Thanks for the info! Unfortunately the zyrtec (cetirizine) made me sort of agitated as well as woozy, so I couldn't sleep! But maybe I'll try it again - it sounds like you adjusted to it; maybe I can too. I haven't heard back from the doc I saw at Hopkins yet. I'll give him a few days and then email him. Thanks for the test suggestions which I can pass on to him.

I haven't posted in ages -- have only had the time/energy to "lurk" and read my daily digest. The good news is that I have had a bit of improvement. The last time I posted, I mentioned that I had started taking low doses of Benedryl for two reasons: 1) I thought it might help me sleep and 2) after reading a bit about mast cell disorders, I thought, well, a bit of Benedryl can't hurt, let's see what happens. The Benedryl in normal doses does what I'd expect - knocks me out, but I awaken feeling wrecked. However - and this is the really weird bit - I started taking tiny doses (I'm hyper sensitive to everythign anyways) to see if it would help me sleep without the "hangover" effect, and realized it was actually really perking me up. I started taking it throughout the day, and have found it to be really very helpful to give me some temporary energy and brain clarity. I have almost stopped taking midodrine, which had some unpleasant side effects anyways. While the Benedryl doesn't raise my blood pressure very much, it just makes me feel better, which is a godsend. (The midodrine is better for raising my perpetually low BP, but there were times that my BP was a respectable 110/78, and I still felt utterly lousy.) Based on what people here have said about mast cell disorders (big thanks to Julie/Macksmom for all the wonderful information she provides), I tried taking some of the other anti-histamines. So far, I have not had the same effect that I've had with Benedryl. Cetirizine makes me feel a bit woozy but agitated at the same time (not a good combo for either sleep or daytime functioning). Here's my question - I'm currently visiting family outside Baltimore (I am American but currently live in England). I've gone back to Johns Hopkins today, where I originally received my diagnosis of neurally mediated hypotension (NMH). The doctor I saw today is the head of the international program, and he's great -- he listens carefully and is never dismissive. He was very pleased that the Benedryl seems to really make me feel better, but wasn't certain why. He was not very familiar with mast cell disorders or more specifically MCAD. We finished the appointment with him saying "Let me look into this and see who you can see about this." Has anyone had any experience with Hopkins doctors who specialize in mast cell disorders? I'd greatly appreciate any info and/or feedback. many thanks, Targs66

I'm curious about the dysautonomia / autoimmune connection, too. My brother, who is five years younger than me, was diagnosed with MS in 2006 at the age of 39. However, his MS has been atypical (thank God!) in that he's never had another major "attack" that led to his dx in the first place. His symptoms are SO similar to mine that I was convinced I had MS also, but a MRI didn't show any brain lesions in my case. Although his MRI clearly showed brain lesions typical of MS, I think we have something very similar going on. I often wonder if it's Lyme disease (we grew up on the East Coast with ticks everywhere; my brother was a landscaper before he got ill and I rode horses in wooded areas almost daily) and not MS at all - from what I've read, it can cause brain lesions in the same way that MS can. Sigh - it would be so good to get to the bottom of all this.