HopeSprings

Oh no, I was keeping my fingers crossed for you. We've all been there with the disappointing Dr's visits - it can be very depressing. I don't understand why he's throwing out the POTS diagnosis though? Wasn't it confirmed through autonomic testing? What IS good is that he believes you and sounds like he wants to work with you to find answers. I think the sleep study is a great suggestion, since many of your symptoms happen at night in bed. Have you had an MRI, given the head symptoms? It makes sense to try the diet since your blood test suggests Celiac. Wouldn't it be wonderful if that was IT? Hang in there -- you've still got areas you can look into. Maybe your answer is right around the corner. ((Hugs))

"Naomi, I was prescribed it and tried it for all of one day. I found out for the "low ADH" to be accurate, it needed to be done in the setting of a hospital, doing a fluid fast." Interesting. Then I guess I won't trust my results either (which were normal). I have a problem of frequent urination and it's especially bothersome at night. Oh it's bad - it wakes me up. Drinking all the extra water does nothing, but make me pee more! A lot of us seem to have this problem. Just wondered since our problem seems related to fluid if there might be an answer in this area. I know of one person who went on DDAVP and her POTS was cured (or at least much much better). I forget if she was on this message board? Just another thing to look at. Sorry, didn't mean to change the topic of this thread.

Endocrinologists weren't able to uncover anything for me. It's hard to find a good one though that will look beyond some of the more obvious stuff diabetes, thyroid etc. I think it's worth a try though - if you can find a good one. Sue1234 said : "I also found out through the course of the last few years that I have a low antidiuretic hormone " Sue, just curious if you have tried DDAVP? It's used sometimes with POTS ans since you have the low antidiuretic hormone...?

Last night I was laying in bed, took my BP while laying on my side it was 70's/40's - I got curious about positional effects on BP -- took it again laying on my back, it went up 90's/50's, layed on my side again - back down to 70's/40's. I repeated a few times with a few minutes in between and same thing happened. I just found it odd and interesting. Why would this be? Anyone have any ideas? Has anyone else observed this? Not worried, just curious.

((hugs)) I know, how I know. I am doing much worse lately too and it's taking it's emotional toll. And yes it is so hard to make sense of the symptoms - and many of the theories just don't hold up in real life. I'm with you - this can't be it forever! Let's hope for a good Dr's appointment on the 7th. I do hope you find some answers.

I think the government banning blood donations from CFS patients provided even more fuel to this fire. I don't understand why the rush to judgement if XMRV was not definitively proven.

Caterpilly - in search for cause of my "dizziness" this was my path: neuro-otologist said it's vestibular (inner ear) at first, sent me to Kessler for therapy. Kessler said it's probably not vestibular, it's my eyes, sent me to neuro-opthamologist. Neuro-opthamologist said, it's not the eyes (eye/brain), it's vestibular. Checked further with other neuro-otologists and neuro-opthamologists (with Dr. Lehrer mixed in there)-- no conclusions. Ended up back with original neuro-otologist - her latest comment was that the dizziness is not vestibular, it's "central" - my brain. Bottom line - they don't know! I may try Kessler again since it sounds like they know more than they did several years ago when I went. Just curious though, since Vicci is so highly regarded-- what does he say is the cause of the problem? Does he provide any insight?

I find my world getting smaller and smaller too, Lieze. I just don't feel like feeling bad anymore in places other than my home. I don't trust my body, I don't know what it's going to do and I feel very vulnerable when these things happen when I'm out in the world. I have limited my activities more and more, however I think it's important that we don't totally give into this. Even though I don't want to go anywhere, I have to force myself because the kids need to get out and do things. I often find that I feel better mentally when I have accomplished a trip the park or the library. I can see where our situation could easily turn into agoraphobia, so I think it's important that we try to get out a little, even if just for short periods and at a slower pace.

Interesting. Is this Dr. Vicci by chance? He is supposed to be the best in the area, but doesn't accept insurance and I couldn't afford him. I was diagnosed with visual/vestibular mismatch as well, by another Dr. who could offer just the diagnosis, but no help. I tried vestibular therapy for a little while, but it didn't help. I read a little about Syntonic Phototherapy and it makes sense in principle. Here's a tidbit: Syntonics, from the word syntony (to bring into balance), refers physiologically to a balanced, integrated nervous system. Certain biochemical conditions in the brain need to be present before effective cortical plasticity and new functions can occur. Neurotransmitters trigger this biochemistry and allow for additional synoptic connections to initiate movement and growth in new directions. Colored light therapy can act as a powerful tool to stimulate the biochemistry of the brain through the visual system by way of the retinal-hypothalmus brain connection. Please let me know if it helps at all - one of my worst symptoms is the way I see or perceive things. My vision is perfect, yet I can't "see straight" if that makes sense. I know it's my brain and not my eyes.

If you were to go for an official tilt test, it could run anywhere from 10 to 40 minutes. Mine was 10 minutes and symptoms appeared within the first few minutes. So if you get an increase in heartrate over 30 BPM or up to 120 BPM (and uncomfortable symptoms) within the first twenty minutes (but most get symptoms within the first 10 minutes)- they'd likely diagnose POTS. Yours went up 35 beats during your informal test. I am no Dr., but it sounds like POTS. I doubt I am telling you anything you don't already know. I hope you can get an accurate diagnosis because there may be medications or treatments that can help you. Here's a general article about dysautonomia. http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm

"I didn't try to take my HR and BP in standing and laying position.. I'm afraid if I'd do that now and then come with that to my doc that would only dig me in deeper in docs eyes as a psychiatric case " I would still test it out - even if just for your own knowledge, to get an idea of what your body is doing. And if you have it recorded on a BP monitor, plus bring articles maybe the Dr. will be more apt to listen. Maybe what you're experiencing is related to the MVP? Here's a little quote from Medicinenet.com: "Fatigue is the most common complaint, although the reason for fatigue is not understood. Patients with mitral valve prolapse may have imbalances in their autonomic nervous system, which regulates heart rate and breathing. Such imbalances may cause inadequate blood oxygen delivery to the working muscles during exercise, thereby causing fatigue." I just don't understand why they won't do the autonomic testing - I would ask for clarification. Here's a good article I posted a while back: http://knol.google.com/k/postural-tachycardia-syndrome#

Well that's good news. Sounds like there is still hope. All that XMRV stuff was so disappointing. Keeping my fingers crossed.

"Basically, I have veins that have gone bad in my pelvic and stomach that are causing blood to pool." Ahh yes, that makes sense. Did he give suggestions on how to deal with the low blood flow to the brain? Or is that a question for the next specialist? I wonder if a vascular surgeon would have any insight re: PCS.

Interesting! Was the transcranial doppler done while standing? This is the test I want done more than anything and have no idea where to get it done. I think this is the key to a lot of my head symptoms. I'm sorry I don't have knowledge about VO2 or PCS. Is PCS pelvic congestive syndrome (looked it up)? Not sure how it would cause POTS? What type of Dr. did all this testing - sounds like you got a very thorough work up. I want to go!

Well that's annoying (and confusing). Have you had any autonomic testing done? Do you think you have POTS or some other form of dysautonomia? Maybe you need to find another Doctor with knowledge of these conditions. Have you done any informal testing of your own - checking BP and heart rate laying and standing?

Welcome. Your post struck a chord with me. My husband and I regularly engage in temperature wars. We are in the middle of an air conditioner battle as we speak. I have explained repeatedly that due to my condition, I have a problem with temperature regulation, but I still get "it's not hot in here." OK, 78 in the house might be ok FOR YOU - but it's killing me. In the winter, I have the opposite problem and we're doing battle over the thermostat - I turn it up, he turns it down - UP DOWN UP DOWN. I'm hoping one day it'll just sink in and he'll let me do what I need to feel comfortable without having to justify it every time. You can try explaining about the temperature regulation problem and if that doesn't work, maybe time and persistence will wear him down. I think my husband is starting to crack. I don't really think he gets it about the fatigue either. He says he understands, but seems to expect me to do everything as a normal person would, never says "why don't you rest or lay down." If I say I'm not feeling well, having a bad day whatever - he'll say "why, what's wrong?" Should I post a sign on my forehead to remind you of "what's wrong?" I give up. As far as pregnancy, I was MUCH worse while pregnant, both times, but after having the babies things returned to regular old pre-pregnancy POTS status. Definitely consult with a few Dr's, but if you really want children, I wouldn't rule it out.

"They started me off with an Echo-cardiogram...pretty standard, except they also like to perform some imaging in the sitting position, presumably to capture things when the HR is really going." I was just thinking about this today.. wondering if an echo could be done in different positions to see what the heart actually does in our case - if anything abnormal would be captured. Doesn't sound like he said? Sounds like an overall very good visit though. It must have been so nice to have a real conversation with a Dr who gets it. Hope the protocol works.

Well, that's a new one! You're right - google doesn't provide much insight. I know dystonia has to do with involuntary muscle contractions - do you have that? If she is sending you for an MRI, hopefully that means she's taking you seriously. Did you get the sense that she thought it was a mental health issue? If you liked her and will continue with her, I would ask for clarification on the diagnosis. 3 months seems like a long wait for an MRI?

This is going to be hard to describe. Do any of you sometimes feel frightened? It's not anxiety, it's not that you're scared about all that is going on, but it's a fearful feeling inside that is a symptom unto itself. I have read that people who are about to have a heart attack can get a sensation of "impending doom." It's kind of like that. This is a symptom that comes and goes for me - it is usually not present, but can come out of nowhere. I have had it for the last few days. I just had my period so my hormones are on the rise this week - maybe it's related. Just wondered if anyone else gets this.

Joejack - I am very aware that dysautonomia is a nervous system disorder. I was responding to Maggie's post above regarding her enzyme deficiency. I would be interested to hear more about Choline. How did you make this discovery? Have any articles or links that talk about the link between taking supplements and reversing medication sensitivity? I did a quick search, but didn't find anything. Since I am so sensitive (even to vitamins) I wouldn't want to go messing with my neurotransmitters without more info. Thank you.

"I have a liver enzyme deficiency" Maggie, wow, what is this about? Please tell more. I can't take anything either - can't even tolerate tiny bits of alcohol. I have wondered if there is some sort of enzyme deficiency. Thanks.

So you're allergic to Keftab then. Maybe it (or the other AB's) triggered something. Just speculating.

Oh, I would love an answer to this question. MCS is such a bad symptom for me and one of the most disabling because the smells are everywhere! I'd question the antibiotic you took if the reaction started after right after that. Are you allergic to cephalosporin antibiotics or penicillin? OR I'd look at the antibiotics they gave you for the appendicitis. Quinolones can be very bad for people (don't know if they gave you any of those). I am a bit jaded because of my own history of bad reactions. I think the right medications can be very helpful, but I also think bad ones can be life altering.

When you say nerve conduction study - are you talking EMG? And this showed both large and small fiber neuropathy? Final question, I promise .

That's terrible! I am so sorry - I hope they catch whoever did this!