targs66

I'm the same - cannot seem to tolerate B vitamins, even though I feel like I probably could use some B supplementation. I've tried what seems like everything, including B12 injections, sublingual versions and teeny tiny doses, but I end up feeling very suddenly unwell: dizzy, slightly sick, buzzy head and fogginess.

Interesting reading this thread to see how people react to different climates. I grew up in Washington, DC and have lived all over - now I'm in northwest England (not far from Manchester/Liverpool) and the weather is KILLING me. I love England and it breaks my heart to think I may need to leave it for something so stupid as the weather, but it is cloudy, windy, rainy and overcast all year round. Everytime I go stay with my family (in the DC/Maryland area) for a few weeks I seem to feel better. Back to the topic - I'd have to agree with Julie's post. I was diagnosed at Hopkins with NMH, which was great, but they've offered no actual treatment options. (That may also have been influenced by the fact that I was doing it on my own penny since I don't have insurance in the States right now.) That's just been my very limited experience, though.

As Zaks mentioned, there's different side effects from indica and sativa. I don't know how you determine which you're getting (maybe it's clearer when you can buy it legally). I liked it when I was a much healthier teen, many years ago, and since then have felt AWFUL anytime I've been brave enough to try it again. I have problems keeping my HR up and my BP up, and I think that's why - either the indica or sativa (can't remember which) have vasodilating effects, which are not good for me.

I was also going to say it might be neurally mediated hypotension (NMH), but others here beat me to it! I was diagnosed with NMH at Johns Hopkins about a year and a half ago. Like you, I had a tilt table test prior to that (here in England) that came up with some wacky results but it was clearly not POTS because my heart rate doesn't increase enough. During the first TTT, when the table was flat, my BP was 79/48, and then it went up as high as around 95/65 when the table was raised. I was told that's the "normal" response, and therefore I don't have POTS. During my second TTT at Johns Hopkins, the results were similar during the initial tilting part of the test, but then they administered a synthetic adrenaline substance and tilted me - my HR started climbing, and my BP absolutely crashed. I was told that is indicative of neurally medited hypotension. If you Google "Dr. Peter Rowe" and neurally mediated hypotension, I think you can find that doc's paper on NMH. Dr. Rowe is at Hopkins but I think he's in the pediatric cardiology department. I find it all very confusing. Some of my symptoms are very similar to those on this board who have POTS, but some are very different. Good luck - keep us posted. =Shelly

I am the complete opposite - I'm thirsty all the time. I guess, to be clearer, it's not so much "thirst" as an uncomfortable feeling that i know will be helped by drinking a lot of water. I have found, though, that water alone won't help and may make me feel worse - it's got to have either salt in it (I just add some sea salt to give it a slightly salty taste), or I mix Brita-treated tap water with carbonated mineral water so that it's a bit bubbly and salty. It definitely helps with a sort of ill/woozy feeling, which I suspect is caused by low blood volume. Someone once told me that I drink water like I'm dying of thirst, which is a bit embarrassing... I suppose I do feel like it's saving my life!!

Thanks very much.

It's definitely the hardest thing I've ever dealt with, because I feel like I've coped in some way or another with all other hardships I've faced, and I don't feel like I'm coping with this. I was always utterly exhausted, but managed to push myself enough to hold down a demanding job, move to NYC with barely any money and work my way up the very difficult ladder of the entertainment industry until I was able to buy my own (tiny) house in Queens. Now I can barely manage a trip to the local grocery store. I used to walk all the time - to the subway, through the city, etc. - and a walk can be torture now because of the dizziness. When I'm in the car, I watch people walking and remember what it feels like to be strong and capable, and I'm so sad that I'm so weak now. But I know other people have it worse, much worse. On my best days, I have a faint hope that something can be done for me and that someday I'll see some improvement. My beloved younger brother has MS - he doesn't have that hope to cling to, and it breaks my heart. I'm sorry to be negative, but I appreciate having the opportunity to rage and vent a bit. Yes, for me, this is the hardest thing I've ever dealt with.

hi Aaron, First of all, congrats on your speedy diagnosis - hopefully it will help you find what you need for a cure. If you don't mind my asking, who is your doc? I'm from the States but live in Northwest England right now. (If you prefer, send me a private message.) I have gotten NOWHERE with my GP - I'm told I have ME and there's nothing to be done for it. Many thanks. Keep us posted on your progress. -Shelly

I think it's the same as (or closely related to) Prozac. Personally, I didn't do well on Prozac even though I took it many years ago when my health was much much better. I have serious problems with fatigue and brain fog, and it made me completely unable to think. It did, however, lift me out of a pretty bad depressive period, so there were positives. I eventually had to stop taking it because I was in law school and couldn't function mentally. Good luck.

Thanks very much for the clarification - it's reassuring. I worry all the time about having something progressive like MS, especially given how much worse I am now than I was a few years ago. I hope you can get some answers regarding your condition soon - keep us posted.

hi Jangle - thanks for your answer - I'm a little confused by what you mean when you say the sensitivity for brain mri's in ms is something like 95% - do you mean that the detection is 95% accurate? Can you clarify a bit? thanks!!

I've also got these symptoms, and they scare the life out of me! For me, it's always been one-sided -- my left foot and left hand have the numbness and tingling. That's gone on for years, and I now have pain that radiates from that foot up my leg and the same kind of pain in my left arm. The pain can be bad enough to keep me up at night (and I'm pretty pain-tolerant), and it definitely corresponds to how bad I'm feeling on that particular day. Unfortunately, it's become worse and it's pretty much constant now - it always hurts, but just varies in intensity. I have a familial history of MS, but have had a brain MRI done that didn't show any lesions, so that is apparently ruled out. (I realize that there's other tests for MS but am in the UK with a GP who won't do a thing.) My brother, who has MS, also has this one-sided numbness/tingling/pain problem, but from what I understand, the one-sidedness a bit unusual in MS anyways. I can't help but think that our conditions are related!!!

These posts are very timely for me, too. Maybe it's something to do with the expectations that the holidays bring - that we'll be able to experience holidays in the same way as other people, or in the same way that we used to experience them, whether that was good or bad. I agree that it's so hard to decide how to deal with this illness, as you have no idea what each day will bring. On days where I'm marginally functional, I feel some optimism for a future that, while far more limited than my "previous" life, is bearable and includes moments of joy. Then I have a physical setback, and all of those hopes are destroyed -- and yet they seemed so little to hope for anyways! Through all those ups and downs, however, I do cling to hope that there will finally be some recognition of this illness and finally, some progress made in treating it.

Thanks to both of you for this interesting discussion, and especially for the link to the article about mast cell disorders. Very informative -- I feel like there's a clue in here to the basis of my condition. (Just very inarticulate today, so I'm not going to even attempt to explain it!)

Does anyone else have trouble with feeling ill after taking vitamin D?? I've tried different forms (the basic one from the vitamin store, a chewable version and a high-potency powder) and to my frustration they all make me feel pretty bad. I eat lots of dairy products, which don't seem to affect me adversely, but I live in northwest England so getting sunshine is absolutely impossible!!!

I've been told I have CFS for years. I was always quite "high-functioning" (or so I was told) so doctors wouldn't believe me - there was this attitude of "of course you're tired" because I had such a high pressure job. The fatigue has always been devastating, and the only thing that got me going was real stress - a lifestyle that, I'm sure, has put me in the position I'm in today. I feel like I have tried every supplement available to mankind to no avail, but the biggest problem is that I am so intolerant of just about everything. I wonder if it's an allergic/mast cell kind of reaction: I end up feeling so much worse after I take things that I just can't force myself to do it anymore. I tried the regime prescribed by Dr. Sarah Myhill (in Wales) which is based on a large number of supplements (vitamins and minerals), and unfortunately, it made me worse. That's not to say anything against her - I know she has helped many patients, and she was one of the most caring doctors I've ever met - but it did not work for me. I hope you can find some help for your CFS; I do think that addressing it early with whatever works for you makes a big difference.

Oddly enough, my hands and feet don't turn red, but my veins tend to be really big, as if they're full of blood. If I lift my hands over my head, they're normal again and then when I lower them I can watch the veins distend. (Nurses who have to draw blood love me...) Otherwise, my skin tends to be quite pale and cold, but I'm usually freezing, so maybe if I ever warmed up I'd get red!

I have to agree with this, and am also so frustrated that no one (certainly not me!) can find the missing link.... My brother has MS and SO many of my symptoms are similar to his. However, I've had a brain MRI which came back normal and my brother has the distinctive brain lesions that indicate MS. I sometimes wonder if it's not that I have MS but that he has whatever it is that's making me ill (he agrees that might be true, but MS is very different for everyone). If it's not the MS thing, I often think it's an endocrine problem as my most debilitating symptoms happened after I went through sudden menopause after a hysterectomy. Before that, I was exhausted for years, but I could push myself. Now a trip to the grocery store is a major event. A night out with friends is almost impossible. I'd love to think that someday (within our lifetimes!) someone gets to the bottom of all this.

Will a lower dose work for you? I tried midodrine last summer, and felt like it really helped with the low BP, but (as usual for me) I could only tolerate about 1/2 or even less of the amount the doctor prescribed. (The problem I had seemed to be a lower heart rate than usual) At a lower dose, I still got some of the benefits of BP support, but didn't have such problems with side effects. Apologies if that's overly simplistic! I hope you find relief soon.

I was very frustrated to find that I couldn't take Florinef either b/c I had heard of so many people for whom it is a lifesaver. I get the same reactions that you described, only I felt so wretched after the first day that I stopped. I know there are drugs that you have to gradually adjust to, but this didn't feel like "side effects"; it felt like it was throwing my entire (already out-of-wack) system even further off!! I think there is an endocrine connection, but that's just based on my personal experience, not on any scientific basis. I've had chronic fatigue for years but was pretty functional. After my hysterectomy, my condition plummeted. I take HRT but never feel like my hormones are properly "balanced" and still get weird side effects from the HRT, and any kind of meds that affect the endocrine system seem to have the worst effects (thyroid meds, hydrocortisone, Florinef). I've read a bit about the "HPA axis" but just haven't wrapped my head around it all. I do think there's some connection - almost as if my system can only process one of those endocrine system meds at a time, so if I take one, it throws off the effects of others. I hope this makes a little bit of sense. If nothing else, know that there's others in the same boat as you!

Just a thought -- I had a TTT at Royal Liverpool, and was told that the results were "normal" despite the fact that my starting BP was something like 79/48. Apparently because my BP went up to the low 90s/60s during the tilt, I was perfectly fine. No one there was interested in the low BP (or all my other debilitating symptoms); they closed my file and I was sent back to my GP who treats me like a hypochondriac. It took my going to Johns Hopkins in Baltimore (my family lives near there) to do a TTT where they also injected a synthetic adrenaline during the test and determined that while I don't have POTS, I do have neurally mediated hypotension (NMH), which is another form of dysautonomia. My heart rate never gets very high, but many of my symptoms are very similar to the people with POTS on this forum, and I have found an absolute wealth of information here. Long story short, if I hadn't had the proper TTT and resulting NMH diagnosis, I would have dismissed the possibility that i had dysautonomia -- and would have missed out on a lot of very useful information -- so I'm trying to spread the word that even if you don't fit in the POTS parameters, you might have something similar!!

Thanks again. It happened again today - I was feeling okay (by my standards anyways), then did a bit of housecleaning. Within an hour I got the dizzy/woozy feeling that I get all the time, and then noticed that my heart was banging away again. My BP wasn't bad (94/65) and HR 70, so it's still a mystery. Going to get some bananas to try to up potassium -- thanks Lieze!

Thanks very much. Glad to know it's not unusual. I try not to focus too much on individual weird symptoms (namely because I have so many) but this has been happening so continuously lately that I thought I should take note, especially given that I've been feeling so wrecked. Like I said, I think the "hard" heartbeats correspond to how tired I feel; it's almost like if my body has done too much, my heart is also tired and has to work harder. I've been doing a bit of online searching and the only thing that I've come up with is mitral valve prolapse, but I don't have a medical background so I may be missing out on the less obvious possibilities. Plus, it seems that mitral valve prolapses can be completely harmless, so that theory may not be worth pursuing anyways. Thanks Julie -- I'm trying the increased hydration to see if that makes a difference. My pulse pressure is pretty normal usually; just low BP (80s over 50s). I've tried midodrine before and felt that it slowed my heart rate too much - my BP would be as high as 105/75, but I'd be stumbling around in a fog. One thing that's been helpful is an antihistamine called acrivastine (they sell it here in the UK as Benedryl Allergy relief), but I wonder if it enables me to do more than my body can handle, and hence the resulting fatigue and "tired" heart?? Thanks again to all for helping me try to figure this out!! -Shelly

hi all, Any ideas as to what would cause a very forceful heartbeat? I wouldn't call it palpitations (I think those are a more "fluttery" chest feeling), nor is it tachycardia. My heart rate is pretty even, but I can feel it thumping hard in my chest all the time. It feels like my heart is exhausted and laboring -- beating very forcefully. If I sit still and relax, my head actually rocks with the beating of my heart (my hubby confirmed this); if I'm lying down, I can hear it pounding and feel it thumping in my back. I've had this before, and it usually comes and goes, but it's almost continuous lately and coinciding with a period of feeling really wretched. It's especially bad in the evening as I'm sitting quietly watching TV if I've done anything to exert myself (and that take very little these days!) during the day. I've had normal EKGs and 24 hour Holters in the past. Don't think I've ever had any other heart-related tests. (BTW, I have neurally mediated hypotension, not POTS -- my BP is usually very low but I don't get tachycardia. My HR is usually 65-75.)) Many thanks!

I've tried several kinds of B12 oral supplements (cyanocobalamin, methylcobalamin - not sure of spelling!) as well as injections, and I react badly to all of them. It sounds like what you described - slightly nauseous, dizzy, shaky, etc. I've tried many times, and in different ways - different brands, with food, without food, "ramping up" from tiny doses, very small daily injections at home, etc. and still have unpleasant reactions. I have similar reactions to many vitamins and supplements, so I try to eat as well as possible, figuring that at least a good, balanced diet should help with deficiencies. I believe there's a lot of B12 in meat, fish, dairy products and Marmite (it's not for everyone, but I love the stuff). Sorry - I'm not sure that's helpful as far as suggestions go, but I thought I'd let you know you're not alone!!!