Jacquie802

raise the bed??? wouldnt that take blood away from your brain?? how would that help? hmm confused ! LOL

Still have my headache and I just can't seem to move too far without feeling like I am going to pass out. Worse is that I have to pick my sister up from work and drive her home. Yeah, this is about as fun as it gets. I am very tired and I dont want to sleep or lay down but seems like thats what I have to do. Does POTS ever go away on its own???? This is really starting to bring me down. I try to stay positive in attitude but I hate feeling aweful. I hate to even complain because I know there are ppl out there worse off than me, so this is my five minutes of pity I allow myself. Is there anything I can do to make myself feel better for the time being???

Hi, does anyone wake up from a nights sleep or a nap with a MASSIVE HEADACHE?? I never got headaches before in my life and now it seems like they won't go away. Sometimes they get better if I have water but other times nothing seems to help. I make sure to stay hydrated but these headaches are becoming debilitating! What causes these? Low blood pressure??? Thanks for any input.

Does anyone else notice that after waking up in the a.m.. or taking a nap their symptoms are worse than other parts of the day???

Hi I am due for a Tilt Table Test Nov. 28th and last time I had one done the whole time the guys were talking to me. They were younger so I dont know if they know they shouldnt be talking lol. I got borderline results and the times before I always had positive results. Could the talking have caused my borderline results and if so why would it affect the results? Thanks!

I understand how you are feeling. Even on your worst days try your best to atleast get out of bed even if just for 10 minutes. The symptoms **** thats all I can really say. There have been days I have just layed in bed, felt bad for myself, etc. It's completely normal to feel sad and depressed, I know its hard for ppl to understand POTS unless they have it as well. There are soo many things to look forward to in life and you are going to feel better soon.

Tilt Table is scheduled for Nov 28th. This is going to be my third tilt table...i have had a neg result, positive result, then borderline (?) result. I dont know what the borderline result was all about but since my symptoms have gotten alot worse my neuro suggested i go to get anther test. Oh i do have a question....one the first 2 tilt tables that i had at boston medical they use a helmet and stuff however the third one i got they didnt use one but they put electodes on my hand.....are there different types of tilt table tests out there?????

HI, your definately not alone there. I was in the shower a while back and I began to feel funny, by the time I made it out my body was numb and I had lost almost all of my eye sight and it was very scary!!!! I dont know if low bp causes it or what. Now before I shower I make sure to eat something light and drink alot of water just so my blood sugar is okay and I also am somewhat hydrated....dont see how I could not be gettin enough water....I drink so much of it these days!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I hope you feel better soon...seems like even the simplest things in life are hard to do.

This is completely random but does anyone else experience tachycardia when they feel the urge to urinate?It's especially worse if I hold it in. Once I go to the bathroom the tachycardia is gone!

Hi, I had an apptment with my neurologist at Beth Israel Deaconess today and he decided to go for another Tilt Table Test and decided not to put me on any more meds until we get the results of my vestibular battery testing. I am going to keep you guys posted, I go for my vestibular testing next Wed. Hope all is well with everyone!

Hi, one of my cardiologists has decided to send me to an endocrinologist for my symptoms such as sweating, facial pallor, etc. Has anyone here on the board been sent to one??? Since they believe I have POTS, would the POTS cause my hormone/gland tests to come out irregular? Has anyone on the board been to an endocrinologist and could tell me what to expect on my first visit?

Does anyone else experience facial pallor, sweats, and dizziness while sitting??? I know when I'm standing that can occur but it occurs while I am sitting and everyone points it out which makes me feel worse. How can ppl expect a person to work when wee have all these symptoms?!? My doctor always asks what my BP is while this is happening but I dont have a BP Cuff and I can't afford one right about now...

It's funny that you ask that question....about 20 minutes ago when I got up I was sweating, felt sick to my stomach, faint, with rapid heartrate.......sure isnt fun.

Hi, I had been prescribed Florinef in the past but I got bad headaches and I really didn't feel any better. I only took it for a few weeks. How long do you have to take it in order to feel better?? Did I stop it too soon?? The way I am feeling now I might just try it again and hope for a miracle.

Hi, I too am having the same problems about which doctor to get the notes from. I have 8 doctors and I am thinking the neurologist should be the one to give me the note AS WELL as the cardiologist since the effects of POTS are linked to my "uncurable" arrhythmia and my hypotension,etc. It's good to know that there are others who experience the store symptoms, etc as well as I do. I ended up getting fired from my job because I had to take soo much time off from work and my coworkers werent understanding at all, to say the least. I am trying to get disability so maybe I can get better from my ear problems...they send me to physical therapy for that, so my balance can get better,etc. My arrhythmia has not been cured after 3 ablations......Wonder if this whole mess is going to get better in time?!

Hi, does anyone here have a worsening of symptoms if they are at malls, supermarkets, or any other busy places. Sometimes when I am driving I feel dizzy faint and lightheaded and of course the anxiety that comes along with the symptoms make it worse!! I have the ear problems so its hard right now to figure out what symptoms go with which diagnoses. The increased salt I am supposed to have bothers my ear problems so that is out of the question. I go to Beth Israel to see my neurologist soon. I asked about work and he said before I should be okay but I had to leave my job because I couldnt even make it through a whole day. Applying for disability takes soo long. Not to mention the added stress of paying bills....sure this doesnt help my problems!!!!!!!!!!!!!! Going in for some testing..rotational chair tests, etcf for my ear problems. If anyone has any advice etc. its greatly appreciated. I hope I don't seem like such a whiner this is the only place that understands this whole ordeal, even more so then doctors. Thanks guys!

I'd say that sounds like a palpitation...what brings them on for you???

Does anyone experience blurred vision in the am as well as through out the day?? Would this be from low blood pressure. I dont want to blame POTS for all of my symptoms but it seems like it is responsible for most. Also is there anything to help the visions problems besides time??? Is there a cure for POTS, can it disappear within time????

Hi, first thanks to everyone for your helpful ideas, and esp. for sharing your stories. I'm glad that I'm not alone. I have a quesiton. As I said before I am suffereing from hypotension, POTS, and vestibular hypotension. My neurologist prescribed the Scopolomine Patch or he said I could take Meclizine. I would like to hear anyones exp. with either of these drugs. I am nervous about the fatigue because the beta blockers I take now knock me out!! I feel soo dizzy and nauseas tonight I am about to do anything to help it. Please any advice would be helpful. Thank you all for being here.

Hi, I have been through vestibular rehab, however I had to stop going because I couldn't afford to go the number of times they wanted me to go. I had to leave my job because of the problems I am having. I don't think anyone can truely understand about this whole POTS ordeal unless you are going through with it.

Hi, I have been diagnosed with having POTS, as well as a heart arrhythmia, and vestibular hypofunction(very dizzy person!!!!!!!!) I was just wondering how I am supposed to deal with this whole thing. I am 21 years old. I had to quit my EMT classes which I spent alot of money on and worst of all it seems like no one understands a thing I am going through. My family thinks I am just being lazy and so forth. I try to explain what's wrong but no one hears me......I have been put on Florinef, but I didn't find any improvement. I have been put on high sodium diet but the salt bothers my ear problems, due to the vestibular hypofunction, not to mention the beta blocker I am on further lowers my bp. It doesn't even seem like I am going to get better, which is more depressing. The doctors think a viral infection may have caused this, because the POTS and heart arrhythmia started a few weeks after I had a sore throat, etc. So, for the last 2 years I have been afraid to do anything. I hate leaving the house, because I never know how I am going to feel, etc. If anyone has any helpful hints, advice, ANYTHING I would be greatfull. Thanks!