RockiesGirl

Also, this is why I posted a few weeks ago about Parkinson's. I was interested to know how many were originally diagnosed with POTS moved on to another diagnosis. Several people have commented that I look like a Parkinson's patient to them. I have asked about it, but really get no answers from the Docs. BUT the neurologist I went to was awful...waiting for an appt. with a new one in August. Currently only seeing a Cardiologist (who is about the most wonderful Doc I have ever been to) and an immunologist/allergist, maybe they just don't know

Yuliya- Mine are REALLY bad too. Sometimes people stare at me, but there is nothing I can do about it. I try to hold my hand down or lay on it but you can literally feel the shaking through me, if that makes sense. Mine are really bad when I am stressed or I have been standing for a while. If I don't find a place to relax my whole body kinda starts in. Do you also sometimes get it in your neck? Or calf? Mine is not a prevalent in these areas but it is still there sometimes. I'm with you...it drives me nuts and has gotten worse over the last 3 months. It also seems like anytime they do any testing it intensifies the problem and makes it worse. I thought it was worse on the Beta-Blockers but went off them for some testing last week....AAAARRRRRRGGGGGHHHHH, it was awful!! Friends are commenting that I need a 'sippy cup' jokingly and while I laugh, it hurts.

I drink a glass of Red wine a few times a week. It is the Only thing that stops the Tremors/shaking and sometimes in a pinch it will slow my tachycardia. But if I drink it too fast or have more than 1 glass I feel horrible. And only Red Wine seems to work, not any other kind of alcohol. I can't tolerate Vodka, Tequila, Rum etc.

Great Thread and interesting to see what everybody's Top 5 are. Wish we could take it to some clinic for ALL of us and say here...fix us please Thanks for posting this Topic...keep the responses coming.

Don't know if this means anything....but my skin always turns a funky color when I take a bath or get in the pool. It doesn't seem to matter if the water is hot or cold, but it is definately worse in hotter water?? Docs seem to brush it off when I bring it up??

I had this a lot more before my Meds.,now only occassionally. But I will wake up out of a dead sleep, scared, heart racing and sometimes covered in sweat. Sometimes it is hard to get to sleep because my heart is racing as well.

Mine are as follows: 1. Chest Pain/Pressure, tachycardia 2. Shaking & Tremors 3. Dizziness/Loss of Balance & Fainting 4. Sleep Disturbance, either can't sleep or sleep forever 5. Recently Neck Pain has started I used to have severe headaches all the time but the Beta Blockers have helped tremendously with that.

For all of you who have been on DINET awhile..... Have there been a significant amount of people either yourself or others, that were originally diagnosed with POTS and later learned that it was Parkinson's, Pure Autonomic Failure, Multiple System Atrophy etc.? I was recently told that I do not meet all of the markers for POTS but Adrenergic Automomic Polyneuropathy and Cholinergic Autonomic Neuropathy with Synccope. We all have so many symptoms...just wondering?

NowWhat, Thank You for you that WONDRFUL POST! It is very much appreciated!!

I am off my Beta-Blocker this week... For testing. Shakey (more than usual if that's possible), almost passing out etc. etc. BUT my main issue is neck pain, in the front Left side. It seems to pulse with my heart beat and it is very painful. I noticed others have neck pain as well, just wondering exactly where.

I want Dr. House too

Thought I'd add my 2 cents ;o) People don't understand. My Best Friend of 20+ years hardly lets me talk about it. I went from a vivacious outgoing woman; to a barely leave the house woman over the last few years. I know it gets old, but sometimes we really just need a friend. Someone to complain to and really listen. That is why I really LOVE the people here and this forum. For me, people FINALLY get it when they see me, because I shake and it can't be ignored. Then I get, "Are you ok?" "Why can't those doctors give you something to help you?" "How can you work?" "You are so young to be going through this?" "Let me give you the name of my mother's Doctor." etc. etc. At least I feel like its finally hitting home with some people, but on the other hand, some of the comments could remain in mouths and not pass their lips to my ears. But I have to admit that I personally did not understand people with disabilities until I was stricken with this. The old saying "Don't judge until you walk in their shoes." Certainly seems to fit Hang in there and realize that they are ignorant because they are not informed or educated....God forbid they ever have to go through something like this.

Can't really answer, but I had a fever 99.4 to 101.8, 8 months (consistantly) before I had a hysterectomy for cervical cancer. The fever never went away and I developed an abcess 6 weeks after the surgery which I was hospitalized for 7-8 days. The docs couldn't figures out the reason for the fever. But symptoms have gotten progressively worse ever since then.

Brynne: I'm so sorry you are going through this. I can imagine at 16 how difficult it would be. I am 39 and was diagnosed this year, but the worst symptoms have been in the last few years. I think I have had some form of it all my life and can sympathize with not being able to go anywhere and do the things you love. All that I can say is hopefully you will 'grow' out of it or you can get on some Meds that will help it be bearable. We are always listening if you want to vent ;o) Try and have a good weekend!!

My Doc says that the MRI can check for clots, stroke, abnormalities such as MS etc. Did they check your Neck too?

Definately doesn't help.... you could be onto something. Just had and MRI/MRA scan done and there is one vessel that leads to my brain that is only operating at 10-20%. That coupled with cervical compression as my Doc put it, is definately part of the issue. Also, my Doc says that if there is another 'issue' going on with our body and we have a cervical problem it makes that much harder for our bodies to operate ;o)

It also depends on what Meds you are taking....On some of the warnings or if you look on internet one of side effects might be Nightmares or 'lucid dreaming' ;o) When I first started my Beta-Blockers I had some weird ones but they have calmed down a wee bit.

When I faint usually, I have some notice. I have only fainted once that I didn't have any notice at all and that was while taking my dogs for a walk. I also did not have the weird, uncontrolable shaking I ussually do after I come to. But usually, My body starts to feel really weak, heavy and it is hard to put one foot in front of the other. My hands and feet start to tingle and then my vision narrows, the world tilts.... Then I'm out. I wake up to people looking at me and shaking uncontolably. Like a few others have said, it is really hard to put into words.

Welcome KaybersMOM; Although we both probably wish it was under different circumstances, Welcome There are a lot of great, caring people on this site with loads of good ideas. We have all been there on some level or another.... My advice, Water, gatorade and especially coconut water if your daughter can stand it. Salt loading...for me just adding a lot of salt to current diet has helped, but a lot of folks on here take salt tablets. Compression hose for the legs, stomach area....I know they aren't gorgeous but they work. For me even tight panty hose are enough ;o) I don't know if your daughter is constantly cold or hot but a shower or bath might help, either cold or hot...Just make sure you or your husband is right there in case there is a problem. A sitting stool in the shower is good idea, but for me the 1st few weeks of my really bad symptoms, I had a bathing suit or something on and someone was always present until I knew how I would react. Always check with your Doctor but at least these are some items that might help a bit. It is a long, slow process of figuring out what works for your daughter, but hopefully with the Docs help she will see some improvement soon ;o)

So Happy to see this thread Lieze!! Keep Persevering even if there are some set-backs!! Take care!!!

To All of the Dad's out there that have been so supportive, the loving husband's who have stood by us and the father's who have helped their Children. THANK YOU!!! There is no way we could do this without you!!!

I just recvd. the results of mine ;o) As my Wonderful Cardiologist explained to me, Apparently there are 2 branches consisting of 2 major vessels that go into our brain, one for the left side, one for the right side. One of my branches, on the Left side is only working at 10-20%. I was provided a copy of the scans and after he told me what the problem is, I can see it on the scans. The Doctor explained that I have probably had this my whole life, but because I am getting older (39 ) Your spine doesn't work as well as it used to and compresses those vessels. Hence, not enough blood flow to the brain and all of the other problems result. He also said that if there is something else going on in my body that we haven't ruled out yet...it would put my already taxing vessels into more of a strain so he wants me to rule out MCAD, mastocytosis and immunoglobulin deficiency too. It is operable but very difficult with ALOT of Risk so he suggested neck excercises and being very cognizant of my movements as this is what is most likely causing me to pass out. Unless it gets unbearable he recommends leaving it alone for now. I too just wanted an answer and now that I have a little bit of one I am just going to try to live the best I can ;o) And stay upright, if possible. Oh and I might add, this is a test my Neurologist refused to give me...saying "There is no way it is a problem there." Needless to say she is no longer my Doctor. Hope you find the answers you are looking for too 718MOM!!! Take care and keep posting...we are here ;o)

Did you have any side effects from the Mestinon? Thanks for the info ;o)

I searched the Forum and found a thread back in '04-'05 about this but it didn't appear anyone else was cold. Wanted to get some new feedback. Is anyone else achy and can almost never get warm? Literally, it is 78 degrees in my house but I am freezing. The only time I get warm is when I sit directly in the sun or take a hot bath. Yesterday it was 84 degrees and here I am in the hottest bath I could stand?? And my legs have really started to ache lately?? Anyone else?? Plus the itching....this too, is newer?? I read Sue's post about seeming always warm?? Can anyone explain?

Just as Sallysblooms wrote, it is our autonomic system. I shake too! Sometimes so bad I look like I'm having a seizure of some sort...it only happens after exertion/walking too fast or my TTT. And it is way worse when I am off my Beta-Blocker. I also get hives and a weird rash but it has only been present during 1 doctor visit & he couldn't explain to me what it was... I always forget to ask things too. I am so centered on trying to keep my body from catapulting to the floor or off the table... ;o) But like I said hopefully you can get on some Meds that may be able to help you a wee bit... I am no where near where I was before, I definately have good days and bad days but I am a lot better ;o)