targs66

Sorry for the delayed reply -- thanks for the info, HyperPots8!! I will see if I can get a referral (I seriously doubt it). I'm at the point where I think I'll just have to go through the hassle of changing GPs (again) b/c my GP won't do much. I'll definitely let you know if I get tested. Thanks again.

Just to share my experiences with thyroid docs and meds -- I was utterly convinced that most of my problems were due to hypothyroidism - my levels were "normal" but in the very low normal range. I saw a thyroid specialist, who started me on very low doses of levothyroxin (T4). I had reactions very much like you describe - massive anxiety, ear pressure, brain fog, insomnia, nausea and so on. We then tried Armour thyroid (T3/T4), again, starting at very low doses and trying to increase. Same results. I then learned about "adrenal fatigue" and tried to supplement with Cortef - still felt awful. I stopped all of the meds. About a year later, I tried T3 only at the recommendation of another doctor. Exact same results. Like leydengs, I finally had one doctor who told me that the most likely conclusion is that my problems are not caused by hypothyroidism. I am not in any way discounting the legitimacy of hypothyroidism, and I know thyroid meds have been a lifesaver to many people -- but I think that in my case there was a tendency to attribute everything to hypothyroidism. Unfortunately, I haven't found any answers as to what is actually causing my problems, but given my terrible reactions to thyroid meds, I think the answer lies elsewhere for me. I wish you luck in finding some answers - you've come to a good site!

Thanks for posting, Radiohfan. I started at a MUCH lower dose (.25 mg at bedtime) but that's typical for me. Even at that dose, I felt extremely dopey, so I lowered it even further. (I was literally having trouble speaking - not fun.) Please let us know what you think. I stopped taking it two nights ago, but may try it again. I took it for a full month, but by last week was just taking a few drops at bedtime. The daytime grogginess/dopeyness was just too much -- one of my biggest problems is unrelenting exhaustion, and I just was feeling weaker and drained. I worked this afternoon (4.5 hours) after not taking it for two nights and felt clearer than I've felt in a long time. However, I'm willing to admit that at such a low dose, maybe the LDN wasn't the problem (or conversely, that the lack of LDN may not be the reason for the relatively clear head today) - ? It's so hard to tell, given that I can feel very bad with new symptoms for no apparent reason, so I don't want to attribute everything to the LDN. As I said, I don't think I make a very good guinea pig! Given all the apparent benefits of this med, like I said, I don't want to entirely give up on it. I am going to give it a rest for at least a month and then maybe try it again. As always, would love to hear anyone else's experiences.... keep us posted, Radiohfan.

Based on my experience going through sudden menopause at age 45 due to total hysterectomy, I understand your frustration! I spent a lot of time trying to come to conclusions from what seemed like a lot of conflicting information, and finally decided that (as Batik mentioned) different people may react very differently to hormonal treatments. For example, I used compounded bio-identical progesterone cream to combat what was described as "estrogen dominance." When I did, I found that my worst menopausal symptoms were greatly exacerbated (insomnia, depression and anxiety). It made me feel like the estrogen stopped working. I spent some time online and on various forums, and found that I wasn't unique - one theory is that if the body is "using" the progesterone, it can't "use" the estrogen at the same time (apologies -there's a much more scientific way of explaining this, but I don't remember it!). Finally came to the conclusion that, in simple terms - progesterone makes me feel worse. Unfortunately, this may just take some trial and error for you. Good luck and keep us posted.

Thanks HyperPots8 - again, this is all very interesting, esp. the fact that the plavix and lovenox got rid of your migraines, but NOT your autonomic dysfunction. It sounds like there's still a lot to be learned. If you don't mind my asking, why have you discontinued the warfarin if it may help your autonomic dysfunction? Were there too many side effects? thanks.

Naomi - so sorry to hear you are feeling this way. Like everyone else, I can so relate. It just seems mindboggling that one can feel this rotten "Every.Single.Day." as Lemons said and yet no one can do anything about it. I really hope you get some info on the calcium/Vitamin D situation. I am another one with very low vitamin D who cannot tolerate vitamin D supplements. I've only gotten funny looks from doctors when I say this and the usual "No, it won't make you feel bad" so for the millionth time I am eternally grateful for this forum and the people on it!! I have only taken the non-prescription form (cholecaliferol), not the prescription form (calcitriol), so I don't know if that would make a difference. Please do keep us posted on what you find out about your calcium levels. And - I hope you're feeling better.

I can completely relate. I do have a lot of supportive and sympathetic friends, but I am so tired of feeling like I'm resented at work. I had one person (the woman who replaced me when I finally quit my regular three days per week) ask "so what's it like being a lady of leisure?" I wasn't sure if I wanted to cry or punch her! If I had an illness that people were familiar with, I wouldn't have to feel like I need to justify barely working, or explain that when I'm not working, I'm really not having a whole lot of fun!! However, I am so lucky in that my husband completely believes me. I think it's b/c he sees how much I want to do things - work, see friends, be physically active - and how utterly wrecked I am when I do those things.

Interesting stuff. I had surgery cancelled at the last minute in 2007 because when they did the pre-op blood tests, they decided I was severely anemic. Then they decided that it wasn't a lack of red blood cells (anemia); it was just that they were all clumped up in the test tube (at least, this is how it was explained to me). Surgery was rescheduled a few months later, and at the pre-op, the same thing happened. Once again they were ready to cancel it, but a savvy nurse who knew what had happened before used a different test tube (maybe the kind with an anticoagulent??), and so the surgery proceeded. I tried to get some answers afterwards as to why my blood was "clumping" (!) but no one was particularly interested... GP just said the usual ("if there was something wrong they would have told you"). About 6 months later, I had blood drawn (can't remember why) and sure enough, they couldn't use the sample. Had to have it re-drawn and put in "a different test tube." Still no answers or interest in finding out why - thank you, NHS. (Sorry, I'm on a bit of a NHS rant today.) I did some internet research and did come across something called "Hughes Syndrome" or Antiphospholipid Syndrome. Some of the symptoms seem very familiar - MS like neurological symptoms, mottled skin, cold extremities, etc. There's a good site at www.hughes-syndrome.org . However, that's as far as I got with my understanding of the condition. Will be watching this thread!!

I've also read a lot of contradictory things about LDN. I'm not sure that anyone really knows how it works, and it does seem to work differently on different people. Like I mentioned, the doctor with whom I had a consult didn't say much about how it worked, just that in his experience, his patients felt a very "subtle improvement" in their mood and general feeling of wellbeing. He said the effect was so subtle that some patients felt it wasn't doing anything, stopped taking it -- and only then realized how it actually was making them feel a bit better and resumed taking it. I can't say I've come to any big conclusions. I am still on a very reduced dose (which is typical for me) b/c the daytime grogginess was just too much. I had a few nights of very bad sleep recently, but can't necessarily attribute that to the LDN. As a bit of an experiment, I took a tiny bit (literally, a few drops) during the day today. I was feeling very stressed, and I think it did calm me down a bit. I'll take my usual little bit tonight and see how it goes. Anyone else want to be a guinea pig? Please keep us posted! As

I've also got horrible anxiety. I used to be the most capable person on earth, and now I feel like a frightened little old person. I don't have specific triggers really -- it's just like I'm generally anxious so whatever is happening at that moment makes me nervous. (For example, if someone says "Let's go to so and so's house" my mind thinks "But driving is very dangerous" or "I don't think so and so really likes me" or something equally ridiculous!!) I am trying to find a medication that takes the edge off - this is just miserable.

Thanks for all the responses! I took a lower dose yesterday, and took that earlier in the evening, so that I could work this afternoon. My sleep was definitely not as good as it was on the higher dose (which was still a very minimal amount), but I felt less "drugged" at work this afternoon. (I was very tired at work and napped as soon as i got home after my little 4.5 hour shift, but that's normal for me.) I'm going to stick it out, though, for a bit longer, even if I have to take less. hi Naomi and Chaos - I'll definitely keep posting. Unfortunately, I feel like I make a poor "guinea pig" because I am so ridiculously sensitive to meds. I'd be very curious to hear how others with CFS do on this medication. jpjd - the doctor was quite conservative, and didn't really talk about the effect on the immune system (however, it was just a brief phone consult so that he could fill the Rx). There was an insert that came with the mailed prescription, and it didn't mention it either - I wonder if they are being very careful not to make claims that are not entirely proven yet -? Issie - let us know if you decide to start taking it? Dani - wow, glad to hear how well your mom and her friend are doing on it! My brother has MS, and I often wonder, given the family connection, whether my problems are also autoimmune related. Do you have any idea as to whether it took them some time to adjust to side effects? As I said, I'll keep posting about it. -Targs

I have terrible fatigue. It affects everything I do. Anything that alleviates it (say, caffeine) has a knock on effect and I am more tired afterwards. My life is so utterly compromised by this problem. I sometimes wonder if those of us on here with NMH (rather than POTS) are more inclined to be fatigued? If so, is it the low BP/HR that makes us feel tired, or is it something physiological that is causing the fatigue and the low BP/HR is just a side effect of that? I think it's the latter b/c when my BP is corrected by medication or stress, I can still feel awful.

I recently started taking low dose naltrexone (LDN). I'm don't believe many of the claims that are made online about it (it will cure MS, cancer, etc.), but when you get past the nonsense, there do seem to be a lot of people that just feel better taking it. I decided to try it for a number of reasons: - I've had a bad "flare" since July, and among other things, am really struggling with weird neurological symptoms, including increased pain/stiffness in my left leg and arm. I've heard that LDN is useful for pain. - I'm in a situation that has me increasingly stressed and depressed, which I know is contributing to my feeling bad. I hear that LDN may help mood. - I have unrelenting insomnia, and LDN is supposed to help. - I was curious about the claim that b/c LDN blocks endorphin receptors, it makes your body increase endorphin production. I don't do well with most meds, including anti-depressants (I'm hypersensitive and the side effects are too much) - thought that maybe LDN would be a feasible alternative to anti-depressants. - I am in England and the NHS will do virtually nothing for me. I just couldn't face going back to my GP and explaining that the leg pain is keeping me up at night, that I'm worried about the tingling/weakness, etc. only to have him prescribe yet another tablet that doesn't work or that I can't take. LDN is something I can get with minimal effort and cost. Anyways, I ordered it online. I had a good phone consultation with a doctor who was quite reasonable and who didn't make any crazy claims about how it would solve all my problems; just said that he felt that some patients felt a bit "brighter" in a very subtle way - a bit more energy, improved mood, improved sleep. I've been taking it for just over two weeks now, with mixed results. I started with a bit less than the recommended dose - the insert that came with the med said that CFS patients should start very slowly; plus I tend to be hypersensitive to most medications. I have been taking about .25 ml at midnight, which is bedtime for me. Pros: I fall asleep without difficulty and can sleep very deeply for about six hours - bliss. I actually wake up feeling a bit refreshed. I've noticed that my mood seems a bit better - I haven't been spiralling into the devastating negative thoughts. Cons: Unfortunately, I've been far too sedated during the day. I have trouble with concentration anyways - this is almost unbearable. Very simple tasks are even harder now. I wonder if my "brighter" mood is just b/c I am so anesthetized? In addition, I have to admit that I'm very achy, and it seems to have gotten worse. It's not just the usual leg pain; I feel a bit flu-y with aches all over. At times I've had chills, but that seems to have improved/lessened over the last few weeks. I'm not giving up on it yet; I understand you're supposed to give it several weeks. I've lowered the dose so that I can function during the day (I work very part-time, about 1 - 2 afternoons a week, and was feeling like I couldn't even do that). The sleep benefits are great, but I do feel far too "drugged" during the day. Anyways, I thought this might be of interest to anyone who's considering taking it. (Still feeling groggy - I hope this makes sense!)

hi Pam - to answer one question in your original post, I've recently tried low dose naltrexone (LDN). I'm usually on the skeptical side of these type of things, but have several reasons for trying it. I'm going to start another topic to address it. -targs

I took it as part of a vitamin/supplement regimen that a Dr. Myhill in Wales recommends for CFS. It definitely had an effect on me - very similar to strong caffeine. I felt jittery and wired for a few hours, then felt very depleted. Not very pleasant or beneficial, in my experience. (I tend to be ridiculously oversensitive to meds/vitamins, etc.) As an experiment, I had my husband take the same dose (about 1/4 teaspoon, if I remember correctly) and it had no effect whatsoever on him. You might want to look at Dr. Myhill's site (www.drmyhill.co.uk) for more info on how d-ribose works. Good luck!

I put "dizziness" but realized that for me that symptom is akin to what could also be described as brain fog. For example, I space out when I'm talking to people - it's like my brain just goes to sleep for a minute - and often get funny stares or comments ("what on earth are you staring at on the desk?"). So brain fog is indeed a problem - but I guess when I chose dizziness, I'm thinking of that wretched unsteady feeling I get when I'm walking, say, through the grocery store. I end up wondering what it must be like to be able to run errands without serious fear that I'm going to stumble or fall. Before the dizziness started, I was devastatingly exhausted most of the time, so fatigue comes close behind dizziness and brain fog. I'm still exhausted, but I could push through that if necessary. Can't push through or ignore the dizziness.

I agree with AllaboutPeace's comment above. I think it's got to do with adrenaline (and/or cortisol)? I find that the nervous anticipation I get before work or even social situations really boosts me up. I don't feel well, but I think it makes my BP rise and stay stable for a bit, and enables me to get through what I need to get through. When the event is over, I crash. I think that's a very normal physiological response to the demands of life, but the difference with us is the toll that the "up" days take. It's DEFINITELY not all in your head!!

I know Florinef is very helpful to a lot of people, but it absolutely wrecked me. I was jittery, buzzy, feeling panicky, shaky - and I took 1/4 of the dose that the doc recommended. I don't think it was just low blood sugar b/c I made sure I ate when I took it. Then I got an optical migraine (where there is a growing moving blurry spot in your field of vision in one eye), and decided at that point Florinef wasn't for me. It took a few days before the symptoms subsided. Hope you feel better soon.

I work very part-time at the office where my husband has a job - it's a small specialized construction firm. I "help out" in the accounts department, usually 1-2 afternoons a week. I feel SO lucky that they let me come in at 1.00pm. Mornings are deadly to me; plus, I have awful insomnia and finally manage to get some serious sleep between 6 am and 9 am. I'm glad I can do at least that much, but am so discouraged that after my little 4 or 5 hour "day" at work, I am utterly demolished. I feel like I can barely remain upright after a work afternoon, and am very tired the following day. Very discouraging, given I used to work a demanding full-time (and then some) job.

Apologies if you already know this, but were you aware that midodrine can cause a slower heart rate? I took it for a bit, but I found that when I was doing anything reasonably quiet (working at a computer, reading, etc.), I got extremely woozy. I started monitoring my BP, and even when it was reasonable (say, 98/67), my HR was very low for me (around low 60's). (I don't have POTS; I have neurally mediated hypotension, so maybe there's a connection.) I just wonder if the midodrine could be causing your lower-than-normal HR and causing this new fatigue and lightheadedness. Best of luck sorting this out. I agree; the woozy feeling is miserable.

Thanks for posting this info, Carolyn. I've never heard of primary peritoneal cancer, and at this point, with no ovaries, I'd be inclined to completely ignore any ovarian cancer-type symptoms that I would have worried about pre-hysterectomy. (I'm not saying I have any symptoms now, but it's so important to know what to watch for!) I had no idea. I'm very sorry to hear about your mother having this disease. I agree that it's hard to draw any conclusions from these posts suggesting which hormonal changes might bring on POTS (or any dysautonomia) and which might help alleviate them. On the other hand, I feel like these experiences show that hormonal changes can definitely be triggers. (Re: my own menopause experiences, see my post above.) I wonder if you would tolerate a very low dose type of estrogen? I personally feel like my body isn't happy with the HRT (I take Premarin, which is the worst, but it's all the NHS offers me), but the insomnia and depression without it are unbearable. Good luck and keep us posted.

hi Joyagh, Apologies if you've addressed this (I'm so foggy today) - is it possible that you have another form of dysautonomia, like neurally mediated hypotension (NMH)? I also had a TTT and was told the results were normal, but then had a second one where during the course of the TTT they administered norepinephrine via IV. I don't have the jump in heart rate that's indicative of POTS. During the first part of the TTT, I was pretty uncomfortable but didn't have any extreme symptoms. After they administered the norepinephrine and tilted me, my heart rate and BP completely plummeted. Apparently that indicates NMH, which (in my limited understanding) is just another kind of dysautonomia. It seems like there's a lot of symptoms that overlap with those of POTS, just not the tachycardia. Best of luck and keep us posted.

All very interesting... my vitamin D levels are very low (18 out of a range of 32-100), then nine months later 15 (same range). Also, my health has gotten much, much worse since I moved to perpetually cloudy north west England from the States. (Nothing against England, mind you, but this weather is awful!!!) I have tried at least three (losing track here) different kinds of D3 supplements, and stopped because (like Sue) they make me feel utterly awful. Given that I feel pretty bad on a daily basis, I just don't take things that make me feel worse. I end up feeling as if I've got the flu. I just took a look at two of the varieties of D3 that I've tried - they both say "cholecaliferol". I'm wondering if maybe I could tolerate the calcitriol variety. Unfortunately, my GP is not willing to do much of anything with me, so I'm not sure if I could get a prescription... The other thing that I find interesting is that D3 is considered a steroid. I tend to react really badly to anything steroidal (Cortef, Florinef, even licorice root). I don't have a scientific background so I have no idea if there's a connection!! Thanks to all for this info.

Interesting... my experience is very similar to Brethor's. I had fibroids, endometriosis and had had several episodes of ovarian cysts, as well as very heavy periods. I thought a hysterectomy would help with my increasing problems of chronic fatigue - pre-op I was still functional and worked a demanding full time job, but was utterly exhausted all the time. I had the hysterectomy, and they took my ovaries, too - I didn't give it much thought b/c I figured I could go on HRT and I was so tired of the ovarian cancer worries. Post hysterectomy, of course I was thrown into immediate menopause (I was 45 y.o., so pre-menopausal). I started taking HRT to help with menopause symptoms- the occasional hot flash wasn't bad, but my anxiety, depression and awful insomnia were intolerable. Even though I seemed to heal very quickly physically (the op really wasn't that painful), I just was feeling worse and worse from a fatigue point of view. Within about a year, my health plummeted - I started having the dizziness, weakness & vertigo that still plagues me. At best, I can work very part-time, but there's many days where I can't leave the house. I've since been diagnosed with neurally mediated hypotension (not POTS), but I don't think it explains all my problems. I sometimes suspect that the HRT is not helping, and I've tried to take less, but it's no exaggeration to say that when I don't take it I am so anxious and depressed (and sleepless!!!) that I feel absolutely suicidal. Long story short, I think the hysterectomy, or maybe the instant menopause, was too much for my system, which was clearly not well anyways. I have no idea if I would be this bad had I gone through menopause naturally? Also, if that's true, why wouldn't the HRT resolve the problems? More questions than answers, I know. I don't mean to discourage you from having the operation, and am very sympathetic to your ovarian cancer concerns. Some women feel fantastic after a hysterectomy - unfortunately, I wasn't one of them!!! I just thought it might be useful to include my experience here. Good luck with your decision, and keep us posted.

Thanks for posting this - food for thought!! It's interesting to see how some people find exercise so incredibly beneficial, while for others, it's not really clear to what extent it helps. I'm in the latter camp. I know too much exercise can demolish me for days, but I feel it's crucial that I don't get so deconditioned that any exercise becomes problematic. I can do non-aerobic activities (lying-down type of exercises), so I do some sit-ups or leg lifts every single day. It's the aerobic ones that are very hard. Because of that, I try to walk whenever I can, even if it's just for 10-15 minutes at a time. If I can't get outside, I walk up and down the stairs. It's very little, but I think it's better than nothing. I give you so much credit for your perseverance with the exercise. Please keep us posted on your progress.