MelissaCrystal

That's hilarious, my Cardiologist and neurologist ALSO disagree completely on this subject. I don't know whose advice to follow at all.

I shiver when my blood pressure is too low.

I don't get migraines but boyyyyy do I get car-sick and train-sick, and even walking-sick. I feel pretty pathetic. I've never been on a boat, I bet you I get boat sick too. I have never heard of anyone getting motion sickness on the light-rail public transportation here in the Bay area (BART), but I get sick every time I ride it. I can't drive, so it kinda *****.

1. Name: Melissa 2. Age : 22 3. Dx: Dysautonomia- POTS 4. Age at dx: 21, but have had POTS since 6th grade 5. Where you live: San Francisco, CA 6. Symptoms at worst: List in my signature, but loss of vision, nausea, and passing out when moving, along with digestive issues, tachycardia, low BP 7. Symptoms at best: loss of vision upon moving, can walk and stand for about 10 minutes until symptomatic 8. Medications/treatments, etc. that didn't work for you: Beta blockers not doing anything, paxil, desmopressin for bladder, all kinds of SSRI's didn't re-regulate nervous system 9. Medications/treatments, etc., that do work for you: so far no luck

I go to a cornea specialist and he told me my pupil function is exaggerated and abnormal, and said everything is healthy though so it was my nervous system.

How irresponsible of the doctor! If you do have to go to the hospital, just make him pay the bill. That infuriates me that you had to go through this pain just because he decided to go out of town after your surgery. He should have prepared for the worst. What if you had died from his negligence? Sorry, this isn't a very good response but I do hope you make him understand that this is unacceptable. I hope you get some relief or some kind of compensation for all this. I really hope that the device was just malfunctioning and that somehow it can be fixed so that you didn't go through all this for nothing. I'm very sorry to hear about all of it =(

I've never had mine tested...I think I should though. I pee like crazy. I was put on desmopressin for a while to help me retain water, but it didn't work that much and it was sort of a serious drug so I went off it. Have they ever talked about putting you on that? Is it permanent kidney damage? Crap, I hope I don't have that. I should probably get it checked out.

A lot of people who are put on beta blockers end up with a heart rate in the 50s, and the doctors are usually happy with that. Mine is in the low 60's after beta blockers, and it was previously always in the 90's. I'm not sure if I really like it and I don't think it does much good for me, because I still have tachycardia while standing, but my doctor is comfortable with it. Anyway, I know exactly what you're talking about though with your heart beating too hard and squeezing. Mine does that a lot, and I can't seem to get out of the episode when it starts. Nothing seems to help me. My heart rate is also low during those episodes. I think it's just called Palpitations and it's associated with that. Heart burn and stomach issues can cause your heart to go into that mode---at least that's what I'm told. I think it's pretty random myself, or if I over-exert myself. I would definitely make that a talking point with your doctors when you see them. And yeah, dysautonomia can totally change on a whim and give you all sorts of confusing symptoms that are not consistent. Your nervous system is just going haywire, and stress is a definite trigger.

I slur when I'm feeling brain fog. I just can't seem to form sentences when I'm in that state, and I seem to slow down a lot and forget things easily too.

What's funny is that I bet you if I didn't wear makeup, I'd get a lot less comments about me not looking sick. I don't look too good without makeup, hah. Pale lips, ash white face, and my eyes are light colored so they make me look even more pale with nothing on my lids. I should post a photo-tutorial on a before and after makeup.

I think it's neat that a lot of you have been getting into different kinds of art forms. I'm actually a professional Illustrator myself, for book covers and videogames. I've always said that the goal of my career is to someday be able to live in my artwork and create new worlds for myself to play in. When I think like that, it makes life so much more beautiful for me. I'm also a big gamer, but that's a little bit more of blatant escapism. But it's fun ;p

Yeah, many many MANY doctors don't realize how many things can cause POTS. I'm not satisfied at all with someone saying "Oh, you just have dysautonomia, and we can try all kinds of different treatments." I want to find out what's -causing- it first rather than masking the problem, so I understand exactly how you feel. What I'm doing, is going to a variety of different specialists in other fields, and looking for signs of EDS, or other things that sort of fit me that -could- cause my POTS. Unfortunately you may have to do a lot of the research work yourself, and bring your findings to the appropriate doctors. It's kind of a big homework job, but I have not been able to find a doctor that is willing to take on that kind of work themselves. The only other option would be to go to one of the doctors listed on the potsplace.com website. They have a lot more experience with it and may know who to refer you to to test for many different kinds of diseases. Personally, I live in California and have gotten tired of the bay area doctors sending me around when they get stumped, so I'm going to travel to LA to the UCLA center for POTS and dysautonomias, and I think they will be much more capable. To me, POTS is a list of symptoms period, and not a true diagnosis of anything. A doctor might tell you they are diagnosing you with POTS, but that doesn't really mean anything, and if they think that's the end of the line, I think they're inexperienced.

When I was first diagnosed with POTS I also had a severe Vit D deficiency, and I feel better now that it's up. Having your Vit D low isn't going to do anything good, and I have never heard any credible scientific study saying otherwise. It's really dangerous to find many alternative medicines online from someone who isn't a doctor. A lot of them are very bad, and there are plenty of stories of people dying or needing intensive care because of self-medication or doing phony online research. I just simply wouldn't do it, and I hope posting the article didn't make anyone else want to do it.

I just bought a 30 gallon fish tank and put some real plants and neat fish in it. I like feeding them live stuff (like worms and shrimp) so it's really fun for me to just sit there and watch them for long periods of time. It might sound boring, but I don't know... everyone in my household joins me for fish-watching time =)

Point is though---another doctor might say you were positive because you had an exaggerated heart rate after the drugs. My heart rate didn't go that high, and they still commented on it going up as a definite sign of dysautonomia because I guess having your veins dilate isn't supposed to make your heart labor. You might have just mild dysautonomia, like some of my doctors tell me (then others say I have stage 3, so whatever). Maybe you should get a second opinion on the test results. I wouldn't throw the test out the window just because one doctor says it is negative. I made that mistake before and wasted a lot of time because of it. The reason the doctors are saying it's much more likely to be POTS is because they're right. Even though they are right about that fact, they may be wrong when it comes to interpreting the test results. TTT's are tricky, because anyone can react badly to the drugs. But if the way you act on the drugs is similar to your symptoms in the heat or during exercise, then doesn't that tell you that you are on to something? Think about that, and don't rule out anything completely, because TTT's aren't greatly accurate because of people's weird reactions to the drugs. I hope I made sense, and I really hope you figure out what exactly is causing your problems! I'm in the same boat as you ;p

Keep in mind that some doctors have different opinions about the TTT. After the drug, my BP went down to 40 over 20. The cardiologist said that was normal, and my neurologist said it was definitely an exaggerated response due to dysautonomia. She was surprised that the cardiologist said I was fine after that response...so that just goes to show you how different each doctor can be depending on their opinions and experiences.

I think every person I know has said this at one point.

I fit a lot of criteria for EDS except the skin one. I do have atrophic scars, but not stretchy skin. Does Joint Hypermobility Syndrome cause POTS?

I do feel worse if I have too much sugar or any trace of caffeine. So I guess I can imagine this in a normal person. That's funny though---I wonder if this happens to addicted coffee drinkers?

My tonsils love to swell up over every little foreign bug. I'm debating getting them taken out. I honestly don't know if it has anything to do with POTS but mine swell up more than anyone else I know, sooo...

I'm not even diabetic to my knowledge, but I have POTS, and the other day my blood sugar was 57 even after eating the entire day (eating a LOT). There's no reason for it to be that low. My blood sugar has been doing weird things lately for no logical reason.

Took a half a day for it to "fix" me, but I am back to my functioning self! Still have pots symptoms when getting up and whatnot, but I can see straight and I don't feel like I'm dying anymore ;p I'll definitely remember how this feels---I see the difference now between my regular symptoms on the bad days and the withdrawal symptoms. Right after I took the Paxil pill again, I felt like I was on a roller coaster, gave me a horrible rush and I felt high for 3 hours. Then I balanced out and my dizziness went away and soooo much relief washed over me. I feel like I'm a drug addict now though, which is scary. Paxil doesn't even do anything for me, and yet my body is this badly addicted to it. When I have the time (to relax) I'm going to slowly taper off of it and find something that does work on me for anxiety =) Thanks for your help guys. I notice now that the heat is making my life difficult right now, but not taking the paxil was the main problem for sure lol I can definitely handle the heat after putting up with withdrawal symptoms for 3 days....whew. The interesting part of this experience is the discovery of my low blood sugar. I don't know if that was a singularity or if I do have periods of time where I suffer from having low BS. I'm going to have some testing done on that now just to make sure everything is okay.

Oh my goshhhhhh that's what it is!!! I feel so stupid hahaha.... My doctor didn't tell me this would happen!!! She told me to go off everything, I didn't realize I had to taper. I'm having my boyfriend run to the pharmacy right now to go get my refill. I can't wait to start feeling better. Man. I'm glad my POTS isn't worse at least, glad it was just withdrawal. I was getting so scared I'd have to put up with these 'new symptoms'. Ugh. Thanks for the help. SO much.

My gosh... the third day of feeling like I'm dying from a drunken stupor. I don't know when this is going to end... I've been keeping cool, eating a lot, drinking a lot, doing everything possible. I took my meds again in desperation to feel better (I have two docs disagreeing, neuro says no meds, cardi says take your meds now!). I don't feel any better. My eyes can no longer see straight for more than 5 seconds. It feels like someone is knocking me over the head every 5 seconds and it causes a wave of dizziness like never before. It feels like I don't know which way is up or down for a second, and it's somewhat nauseating if I keep my eyes open for too long. I've been communicating with all my doctors, and they've been giving me the same advice as you guys, but other than that they're stumped and don't know how else to help me. I don't know how to recover =( They tell me to go to the hospital if I think I need help staying hydrated, but honestly, I feel OVER hydrated. My belly is so full of fluids that my underwear is too tight! What's interesting though is that I have never been tested for diabetes....I was desperate yesterday and had my boyfriend go out and find a blood glucose meter. I took it after testing the control substance and testing a friend, and mine was 57. The instructions say that anything below 50 should send me to the hospital, and that I'm faaar in the low range. This was after a day of eating, too, so it really should not be that low. Anyone have any input on that? Eating was not helping it, and not making me feel any better. This morning my blood glucose was 96, in the normal range (this was after fasting the night). Which makes no sense... NO sense. I am so frustrated. And I feel the same. I am dizzy out of my mind. My BP is 98 over 63, which is normal for me, and my heart rate is only slightly elevated. I cannot find the reason for the way I feel. I am on the verge of a mental breakdown---I just can't imagine feeling like this for ANOTHER day. It's not even that hot...it's like in the 60s, sunny. =( Sorry for being so complainy. I'm very desperate, and I'm scared that the hospital will say nothing is wrong with me and it'll be expensive for nothing. Le sigh. Edit: Okay I have an idea. What is drug withdrawal like? Is it anything like this? I haven't taken my Paxil 20mg in like 4 days. I didn't think 20mg was enough to make a diff though... In fact I thought the Paxil was useless and that's why I haven't been taking it...it's doing nothing for me. Do you guys think I am withdrawing from only 20mg of Paxil?

Welp, I was able to get my BP up to 90 over 70 by eating a ton of salt pretty much and drinking a lot of fluid. I've been sitting too. Buuuuuuuuut my dizziness is worse than before. I feel like I'm in a drunken dream with waves of lightheadedness hitting me like a train. I really hope I'm better before tonight---I have so many plans that I don't want to cancel =( My doc got back to me today and told me to go off the beta blockers because it can lower your BP and it doesn't seem to be doing much for the tachycardia. I'm REALLY scared of this because I'm MISERABLE without beta blockers. But she's the doctor, if she thinks it'll make me feel better than I do right now, I'm gunna do it. I just hope I'm not more miserable. So as of right now, I'm on no meds. She also wanted me to go off the Desmopressin and Paxil. .... I feel like I'm back to square one with everything. Thanks, California weather.