misstraci

Jangle that is intersting!! I had an EMG showing mild neuropathy but nothing abnormal enough for them to look deeper into it.

Not sure if this is similar to what you're talking about but when I get hot the veins in my hands look huge and bulging and of course blue (in fact, you can see all the veins in my body, I'm very pale skinned). And it's weird because I thought hot weather and showers caused vasoconstriction, is that true? I've thought it's weird for my veins to look huge when I was hot. It could very likely be from blood pooling, not sure about the blood pressure.

oh gosh, what does the warning say? The warning on all meds seem to freak me out pretty bad, not even a "warning" on most, just the possible side effects really. I was given reglan in the hospital once and I felt as though I was going to jump out of my skin. I'm not sure what it did but it was like restless leg syndrome all over my body.

Thinking of you, Hope you get good news and not bad! xoxo

Curious to see how your TTT experience was and if you found out anything?

Hi welcome. 1. I'm glad the water/salt has been helping a bit. I would back off or at least explain it to them to make sure things stay accurate and baseline to what your body would normally do. 2. The test is super simple but for those with bad symtoms, it can be bad, it all depends on the person I suppose. For myself, after a portion of the test, they gave me nitroglycerine to "provoke" more symptoms and not trying to scare you (in case you're also given it) but just be prepared, no one prepared me. The first 10 seconds were fine and all of sudden I felt immense, crazy fast heartbeat, lightheadedness like never before, i thought i was going to puke, things were blacking out and then they laid the table down. My BP went to 40/20, HR 170s. Sometimes you aren't given any drugs, for me they did because my normal test was borderline and I think they wanted to provoke my symptoms and compare with how I usually feel. Good luck, let us know how it goes!!!

I'm not sure why the nails or cat nails would cause such pain for you but the itching after a massage is completely normal!! I don't know the technical explanation but something to do with the massage/circulation/nervous system. I've been going to a chiropractor and for the physical therapy portion they make you get on this vibration plate that basically does just that, it vibrates, causing your entire body to shake (side note: not good for POTSys) but it makes me itchy and the nurse says it's because it is affecting your nervous system causing it to release hormones, etc.

Bebe, I feel exactly as you do. It's been 3 years for me going strong with only a probable pots diagnosis after many things ruled out. I still believe there is an underlying condition causing the "pots" symptoms though, not just for me but for everyone. I'm sorry you still feel cruddy. I'd ask the doctor about the various tests. I hope your dr is caring and would give you the time of day. Mine would say that we've done a full workup, some people just live with certain things, they have to get used to it. BLAH, I've heard that too many times yet still feel like death. anyways, I'd just ask and hope for the best, hope he will do the tests for you. I've been feeling back at square one too. I'm thinking about going to Mayo or something. but even that feels like a last resort and what if no answers from them either?!

I'm scared to take drugs!!! and especially midodrine which multiple drs have tried giving me. I've just heard so much negative (although I've also heard lots of positive as well) but i'm scared because my blood pressure isn't particularly low and in fact lately its been kind of high. I don't want to mess with that. I'm even scared to take the lexapro that was prescribed over a month ago. I can associate with your anxieties in this respect. Whatever you decide, I hope it goes well, just wanted you to know that I feel the same way about taking stuff. I don't even like taking tylenol unless absolutely necessary.

Hey, the only negative side effect and the doctor forwarned me about it was tender/soreness for the rest of that day. At first it wasn't bad but later that night, i could barely turn my head. After that went away though, so did all the pain I was having.

I'm not even sure what a long QT is, however, when I was reading about a new medication (lexapro) that I was supposed to have start several weeks back but haven't yet, the warnings/precautions kept saying that it can cause "long QT intervals". I don't want to not read and go into something unknowledgable but at the same time, reading stuff like that makes me not want to take things. I guess I'm thinking lexapro and maybe similar medications could cause them! just an idea. not sure if they are common for dysautonomia though.

I'm sorry you're having headaches. I don't have them and can't answer those questions but I had terrible neck pain, excrutiating pain that I got an occipital nerve block for and it was amazing how much it helped, it made the pain completely go away!!!! If you get the treatment, I hope it helps!!!! Feel better.

Thinking of you! I pray it's nothing serious like cancer. maybe it's something with your spleen that can be fixed more easily. I've been having discomfort on my left upper side, under the ribs lately like you describe. I haven't had it checked out because it isn't constant but it is concerning. Hope you feel better, let us know how it goes!!!!!! good luck

Nicole.... I think it's awesome you have been seeing improvements with the supplements you've been given and the diet changes and toxin elimination!!!! I hope it only continues in the right direction for you. That's neat you were able to see it for yourself. What area do you live? I wonder if any natruopath near me could be of any help. I am almost convinced I have lyme but don't know who to go to. Thank you everyone for your responses!!! greatly appreciated as always

Thanks for the link Rich! printing and reading soon.

I'm 29. didn't have a vaccine. had the chicken pox as a child. had shingles two years ago and gave my son chicken pox via my shingles. He was not a year old yet and now days, the vaccine is given at 1yr or older. so he had chicken pox at about 10-11 months. still was given the vaccine as well.

thanks Issie!!! I've seen you guys' post going back and forth, I have not had the attention span to sit and read it yet. but I want to!!! I'm glad you are seeing results! Corina.... I have seen that movie/documentary! It freaked me out a little bit. but very informative.

I'm sorry Racer. I often feel like I'm living in a "toxic" environment as well. More negative vibe than toxic but I guess negative = toxic. Take baby steps!!! I'm certain any changes, even small ones, add up and makes improvements and I'm sure they would help with your health as well. I'm not sure how old you are and I guess that part doesn't matter but if you're able to get a taxi, ride from someone, etc. Go to the store and get you some good, healthy food, instead of the junk. If you're in your room being depressed, write, get it off your chest, no one has to ever see it, just get it out of your head. You could do breathing exercises, stretch, do yoga, any of that. Get your mind in the right place even if others' aren't doing the same, I know it's harder than it sounds. Sorry your appointment is still far off. Good luck with it when it finally gets here. Keep us informed. Healthy, happy vibes to you!!!!

thanks. BeBe, I will have to look up that book, thanks for the recommendation. Allotmenteer, I'm so sorry. That all sounds super crappy. I hope you're able to find a new dr soon that is knowledgeable and can give you proper treatment that isn't outrageously priced. I can't believe the illness is so controversial and hard to treat as well. Years of harsh drugs and still can't kill the sickness.

I ordered this book from goodwillbooks for less than a dollar becuase i hate paying full price for them but then they emailed to tell me it was no longer available, I was so upset. I was reallly looking forward to reading it. I didn't read you guys' comments word for word but I know diet is supposively what can cause and what can cure disease. Yes, our world is extremly toxic these days and it's up to us to do right for our bodies. I want to eat better, I'm just really bad when it comes to sweets and chocolates.

yay!! Glad you were able to make it in and make it through as well as do good on the test. That is definitely encouraging!!!

awww I'm sorry RELAX86. That sounds like how most of my appointments pan out. How frustrating!!! I would also want to know what the "somethings" could be and why do we have to just "watch", why not dig now. It's not like you're sick for the first time on the certain day, if you're like me or most, you've BEEN sick and so it's not like watching is going to make things wax and wane. haha "here's my $10, see you again-never" That made me laugh!!! Kinda how a lot of things end for me too Keep digging! don't like discerning or belittling people ruin your search.

I'm curious about everything involved. Do you have lyme? Did you have lyme? When were you diagnosed and who did it (pcp, llmd, etc)? Did you have symptoms for long prior to diagnosis? Did you see the tick? Bulls eye rash? What treatments did you use and did they work? Are you still experiencing aftermath from your disease? and add whatever you'd like. Just want to learn everything possible. Thanks

At this point my letter would have lots of blanks for all the profanity that I'd like to scream at my sickness

CMA???? How are you doing with the lexapro, are you still taking it? Still experiencing side effects? Is it helping your POTS symptoms?