targs66

I completely agree with the other posts about being dismissed the minute you mention CFS or ME. I've never been formally "diagnosed"; I just have had debilitating fatigue for as long as I can remember. No one could ever find out what was wrong with me, and b/c I was pretty functional back then, my fatigue was dismissed as "all law students are tired" or, later, "with a job like yours of course you're tired." But I was soooo much worse than my peers who were living the same demanding life that I was that I knew something was going on. I finally started seeing a chronic fatigue specialist myself to try to get to the bottom of my problems. Many years later, and now in England, it's the same thing with ME opposed to CFS. I tentatively told my GP that "I've been told I have chronic fatigue", and it seems to have relieved him from any obligation to do anything for me. My ongoing and worsening dizziness/vertigo was dismissed as migraines(!) by what was supposed to be a topnotch neurologist, despite the facts that I almost never get headaches and that the wooziness is continual (as opposed to the waxing and waning of symptoms that migraine sufferers have). So now, as someone labelled with ME and migraines, there's basically no reason to go to my GP - he's done with me. Sorry - this has turned into a bit of a rant!!! I guess I'm just trying to point out the pitfalls of the CFS/ME diagnosis: in my experience, it's led to being dismissed by doctors rather than leading to different treatment options.

Hi - I'm so glad there are decent doctors out there ... I'd love to hear what Dr. Thompson recommends for treatment/meds, etc. Can anyone who's seen him provide info? many thanks.

I also get occasional unexplained blurriness, but it tends to occur much more in my left eye. I've been told for years that I have "enlarged" optic nerves when they do the routine dilated pupil examination at the eyedoctors. I've worried that it's optic neuritis, as that's a symptom of MS, but have been told on further examinations that it's not that. I find the blurriness seems to coincide with bad days, which doesn't seem surprising. It's something that I find quite worrisome! Sorry i don't have explanations - but I feel your pain!!

Thanks for the info. (I'm American but live in England.) I haven't tried compression stockings, and one reason was the price. Will bring it up with my GP.

That's great to hear. Thanks for sharing this - it's nice to get encouragement.

I can also relate to this... I always wonder why walking around the grocery store (which is literally a five minute drive from the house) is such a massive effort when I can walk around my own house and garden for the same amount of time? My (very unofficial) theory is that it has something to do with adrenaline: even if it's not an "anxiety attack", don't even healthy people get a bit "geared up" (for want of a better expression) when they go out in public, even if it's just the most basic human interactions? I've got neurally mediated hypotension, which means that my body responds inappropriately to adrenaline and stimulation. So that very minor form of stimulation: getting out the door, driving, being with other people - is enough to trigger my symptoms. Again, this is just my own theory, so please take it with a grain of salt!

Interesting what Monstrosity said about neurontin. I haven't taken it myself - but have three different family members who took it for various reasons (brother with MS, mother with fibromyalgia, sister in law - not sure why she took it!) and they all said it affected their moods/emotions in negative ways.

Welcome to the forum, Carrie. I'm so sorry to hear that you're going through all this - but it is great to hear that you have the medical expertise that you've got. I honestly feel that this condition will end up being sorted out by the people who suffer through it. I have been diagnosed with neurally mediated hypotension (which, if I understand it correctly, is just another label for NCS). I mention that b/c your symptoms and test results sound very similar to mine (with one major exception: you said you are "rarely sluggish" and I'm perpetually exhausted!) Just wanted to say that b/c it took a long time to get the NMH diagnosis, especially when a diagnosis of POTS was excluded for me. Anyways, welcome, and keep us posted on your progress.

Magnesium definitely makes me a bit "wired" and jittery! I've heard over and over that it is supposed to have a calming effect, and people take it to help them sleep, but it does have the opposite effect with me. (I have trouble tolerating most vitamins/supplements/meds, so my reactions are always a bit weird.) Magnesium definitely interferes with my sleep - I've tried it over and over.

The whole hypothyroid thing is mystifying to me! I thought it was the root of my problems, seeing as I'm cold all the time, depressed, losing my hair, anxious, etc. But everytime I've tried a different thyroid med I've felt awful, even when I took small doses. (Started with T4, gave up on that, then Armour, same results, then Cytomel (T3) and a "bioidentical" form of T3.) I wish I could describe what they do to me: my head feels very thick and stupid, almost like it's "buzzing," and I feel very irritable and anxious, like I'm literally about to burst into tears. I also feel very hungry. I also tried supplementing with different forms of cortisol because I read that you can't metabolize thyroid meds if you have low cortisol - same results. Glad to see that others here improved with thyroid meds -- I'm jealous!! Do keep us posted, Monstrosity.

I'm sorry because I don't have any answers but thought I'd mention that my weird blood issues seem to be the opposite! Twice in my life I had pre-op blood tests and they cancelled the surgery b/c they said my red blood cell count was incredibly low. Shortly after that, I was told that wasn't actually true - it was that my red blood cells "clump" much more than other people's (like it is hypercoagulating), and therefore it appeared that there were fewer red blood cells than there should be. I never got an answer as to why that was happening. The second time this happened was right before my hysterectomy, and the surgery was cancelled. When they rescheduled it and did the pre-op blood tests - same thing happened. They finally just put a note on my chart describing this. There is something I've heard of called "Hughes Syndrome" that seems to describe this problem, but I haven't found much info about it. I have yet to find a doctor that thinks it's linked in any way to my health problems. I do take aspirin on a regular basis - it's one of the few medications that doesn't seem to affect me adversely at all - b/c I worry about blood clots. Again, sorry that doesn't provide you with any answers!!

Firewatcher's description of what's actually happening seems to make sense in my case.... the least bit of exertion, and my BP drops drastically. Just yesterday I went outside for about 15 minutes and pulled up dandelions - I was slightly out of breath while doing it. Came inside and was shaking and dizzy. Same thing if I take a walk - even if I feel okay while I'm taking the walk, afterwards I feel weak and shaky and have never been able to figure out why. I think I unconsciously am avoiding exerting myself for that reason: I know that my body is going to react in a way that makes me feel very woozy afterwards. (My BP in those situations is usually about 85-90/55-60.) I guess I need to make sure I'm hydrated and have plenty of salt before any exertion. The "winding down slowly" does make sense, except that I'm not doing anything particularly active - !

hi Naomi - I tried an anti-viral called Amantadine several years ago. I wasn't under the care of a CFS doctor at the time, but a family member had a prescription for it to help with his MS fatigue (it's actually an anti-viral but some MS patients have used it with success for fatigue, if I understand correctly). He wasn't crazy about the effects and so gave it to me: I had heard about it being used in connection with CFS. I didn't do well on it. It made me super-jittery and wired but didn't erase the cognitive difficulties. I know that's not much information, but thought every little bit might help. Keep us posted on how you're doing, and good luck. -Targs

Interesting topic. I think some of my symptoms are like yours, Naomi. I've been told I have CFS for years. I have tested positive for EBV and HHV-6 (but the tests were many years ago, so I don't know details). My biggest problem has always been devastating exhaustion, including concentration problems. It's only in very recent years that I've developed dizziness, vertigo and BP problems (I have NMH, not POTS). I've always thought it must have something to do with a lack of blood to my brain. Please keep us posted on what you find out - ? I'd be very curious to know what this diminished brain flow does to the brain? Is there any danger of it causing long term damage? I'd also be grateful if you could pm me the name of the NYC doctor. I saw a CFS specialist there in the late '90s (I lived and worked there then) and am curious if it's the same person. I'd be happy to let you know my thoughts on her, if it is indeed the same doc. Many thanks. I really hope the new recommendations make a difference- good luck!!! p.s. Thanks to Lyn for all the detailed info on SPECT scans, etc.!!

Wow - this actually sounds like someone I was thinking of seeing... could someone PM me the name of this guy? I agree with the comments above. I find it nothing short of outrageous that a doctor would require that you buy his DVD or book to accompany your treatment. I wouldn't have any issue with a doctor including a list of RECOMMENDED reading to help you understand your condition and treatment. But require?? When you're paying that much for an office visit??? And donate to a "fund"? That's just wrong.

hi Pam - I agree, this site is a godsend! I read your symptoms and so many of them are SO similar to mine. Just wanted to add -- I was finally referred for a TTT by my GP (I'm American but live in England) and was stunned when I finally got the results - they said it was normal, even tho my starting BP (lying down) was something like 78/49. (The clinicians thought they couldn't do the test b/c BP was so low, but the consultant said to proceed.) I was told that the result was "normal" because my heart rate did not increase sufficiently for a POTS diagnosis, and that was the end of it. I was so disappointed - not that I want POTS! - but I thought I was finally going to get some answers to my problems. However, I had a subsequent TTT about a year later (this one was at Johns Hopkins) during which they administered a synthetic form of adrenaline. Although the diagnosis for POTS was again negative, during the adrenaline part of the test my HR and BP just plummeted (something like 62/40), so I was diagnosed with something called neurally mediated hypotension or neurally mediated syncope. It's another form of dysautonomia, and there's info on it on the home page of this forum. Just wanted to say this in case you have a TTT and get "normal" results - there are other forms of dysautonomia that they may be missing. I hope that's helpful. Good luck with finding a diagnosis - keep us posted.

I am so glad it works for you, Jangle -- and I hope it can work for others. I am personally so frustrated with my own attempts at exercise. I know I feel bad because I am deconditioned (I'm not overweight, but am just so weak). I try to do some strengthening exercises every single day, even if it's just some situps and leg lifts (can do those lying down!) at night when I'm a bit better. But my attempts to take walks almost always put me in a tailspin. I suspect there's some mast cell /histamine issues going on, because time and time again I feel so much worse for days afterwards. Keep us posted.

hi again - I still haven't found any positive responses re: histame. One poster did say that copper deficiency may be related to a lack of DAO (but also that copper supplementation can be toxic so you must be careful!). On yet another site (allergy UK) someone posted about trying something similar called "Daosin" but without any real results. She said she had had some relief from histamine intolerance by taking magnesium, which is supposed to act as an antihistamine(?) I don't think there's going to be any clear cut answers to all this!

My BP is very similar to yours when I'm lying down, and it does odd things if I'm on my side (on one side I can't even get a reading; on the other it's in the low 70s/40s). I often find that my heart pounds very hard (not fast) while I'm lying down tryinng to sleep and I think it's b/c the BP has gone so low. (No wonder I wake up tired!!) I've been told this is "normal" (ha!) and that BP is always lower when you lie down. I suppose it makes sense that if my BP is normally no higher than 95/65 when I'm upright, it's going to be in the 80s/50s when I'm lying down. I do find that if I am not lying perfectly flat I feel a bit better, so I've got the head of my bed slightly elevated and I sleep on 3 pillows. I also try to stay hydrated, even though I know I'll have to go to the bathroom in the night. I hope this helps a bit.

I'm another one of the "low dose" people. I have found that some things that can make me feel awful at the recommended dose can be helpful in a tiny dose. For example, a little crumb(!) of Benadryl (diphenhydramine) helps me sleep but if I took even 1/2 pill I would feel absolutely rotten.

I found that I really like "watered down" fizzy mineral water. I just fill a glass 1/2 with the fizzy mineral water and 1/2 with filtered tap water. Unfortunately, mineral water can be quite expensive, but our grocery store often carries a cheaper version. I can drink glasses of the mixed water, and it doesn't have any of the additives or sugar of Gatorade or soda. Plus, maybe the little bit of salt and minerals in the mineral water are good for me? I used to drink filtered tap water but I really prefer it with the fizzy water added. I know what you mean about the "brain damage." It almost feels like a mini transient blackout - I can be speaking to someone and the plot is just ... gone. Or I stop what I'm doing and then realize that I've just been standing (usually clutching something) and staring into space for what feels like minutes. I've started to think that when that happens my HR and/or BP have suddenly dropped, and my brain has gone on "hold" due to lack of blood. I know that panicky feeling - like, "what is happening to me?!??" - but try to stay calm by telling myself it's a temporary thing and will pass. It's really unpleasant, though. I hope you feel better.

Issie - I haven't tried Pepcid, so I can't chime in on that, but was interested in your theory that the other antihistamines were possibly making you more sensitive... I take very low doses of Benadryl (the old version - diphenhydramine) at night. (I also take Benadryl Allergy - acrivastine - during the day - but have been taking it for almost a year now.) The diphenhydramine seems to help me sleep and calms me - I think I've been taking it about 2 months now. I have recently had real problems with itching skin. I can't see any hives, but I have this awful crawling sensation and terrible itching. I thought maybe it's b/c I'm taking the diphenhydramine at night - like maybe it's doing its histamine blocking thing and then when the histamine comes back I itch with a vengeance?? Then again, given it's springtime, maybe this is just an allergic reaction to all the pollen in the air??? It's all so confusing!!! -Targs

hi Issie - Sorry for delay in answering - I've had some trouble with the other forum (I realized that my original post had actually not posted(!), then got error messages when I tried to repost, etc.) . I think I've got the post sorted now (of course, the other problem is that I don't seem to be receiving notification of replies - sigh). I did notice that someone had posted that they had tried Histame but weren't sure if it was doing anything; someone else pointed out that it had "fillers" that might be triggers for people with mast cell issues. I'll post if/when I get an answer. best, Targs

I know it helps many people, so let's hope you're one of them! I couldn't tolerate it at all, but I don't tolerate most meds very well. I took less then 1/4 of a tablet (can't remember the dose but I think the script said to take two tablets per day) and felt very shaky, buzzy and just ill. Within an hour, I had an ocular migraine. I'm not saying this to be discouraging - I know there are a lot of people who do very well on Florinef - but just to let you know that some people don't do well on it. Keep us posted.

Thanks for this info - like everything else medical, it's more complex than it originally seemed!