Agreeky

Spinner I looked into getting one at home, but I wanted to try it first. MomtoGiuliana thanks for the info. Seems like it could maybe help if you know the specific cause of your POTS

I used to be social drinker in highschool and in college. Never bothered me. When I got sick though it all changed. If I drink now I cannot breathe!! It is like suffocation. I only drink like once a month now. Probably better off?

Mine is my eye symptoms. When go into a dark room a black cloud comes over my vision. Almost like tunnel vision. No eye doc can figure it out.

This is random but has anybody ever tried this bed? It helps with wound healing, but other benefits too. I read it can help with Autism, and inflammatory diseases... I had the idea maybe it could help us? It gets oxygen to the parts of your body that needs it. I asked my doctor if I could try it she said no. Without much explanation. Has anybody tried it? I still really want to give it a shot.

I have long thought I had a chiari. I get the sizzling sound in the back of my neck. Actually had it for years before I had symptoms though... It gets worse when I have an empty stomach too Hanice. I am going to look over my MRI. Can a Chiari lead to brain demage or disease?? I talk to this womam Sammi and she has one and she has MSA. She is not sure if the malformation gave it to her? I really hope there is no correlation.

I get the burning feeling but mine is due to neuropathy I think...

I am able, but I have been let go from last two jobs. They both said I had attendance issues, which is always due to doctors appointments. Or having to go home due to pain. I get a lot of abdominal issues...

Hanice it is weird isnt it! Mine gets worse when I am hungry? Freaked never had it tested. How do you test that?

MomtoGiuliana I was doing yoga and it seemed to help. But I have bad knees and it started to hurt them : ( i heard low Iron can cause muscle jerks. Im a weird one though where my iron is normal except my ferritin which is the iron in your body and mines very high for a female.

Does anybody have theories on why this happens??

Yes to mold and sinusitis. My MRIs always show it. I often have black specs in my mucus that docs ignore. Yes to the intense pressure when standing. No to fillings and no to being a vegetarian. Are you linking this to something??

UnderWater I have posted about this before and so have some others. When I walk feels like whole ground shakes. Also I body sway even when sitting. Have mo explaination for it though! Mine comes and goes.

I have had twitching/spasms/cramping. My tongue was twitching so bad I was convinced I had ALS. My previous neuro did an EMG though I even let him stick the needle through my tongue. That was extremely painful lol. They come and go though right now I have not had them for a while. A natural muscle relaxer might help. You might want to look up BFS too.

Migraines can cause some crazy symptoms. Do not know if mine are pots are not because they run in my family. One neuro tried to blame all my symptoms on migraines including stomach issues. Do not really buy that though.

That worst panic attack I ever had was during all this. To the point where I drove myself to the hospital ran into the ER and announced I was having a heart attack. It is slightly comical when I look back. As bebe said there are really no answers. Certain medications and relaxing techniques can help though. I do acupuncture seems to help. Also, I like to work out like on the elliptical. I put high resistance so I stop myself from going too fast. Not sure if you are able to? I get massages as well although they get costly. I think they help a lot if you can afford it.

Davecom that is a good theory about the lumps. I have often mentioned them to doctors and have been ignored. Also get tiny tiny little round bumps near my armpits. Blue I have never had that cracking sound. I do get told I have silent migraine though.

Lol I can imagine! I wonder why we get this swaying??

Thanks!

I was supposed to have a HIDA scan but upon seeing a second GI he was really against it. He told me half the people that get it removed do not really need to. It is something doctors do when all else fails. Not sure if that holds true to anybody here? I ended up not doing the scan based on his opinion.

Rach I have breathing,bladder, and Hypertension(my bp goes up) involved and it is still called mild from my neuro. I guess compared to what I read on here I could call myself "mild". In the sense I am not bed ridden and can still function in society. That I do feel very lucky for!

Yes my leg jerking was bad yesterday. I read it can be related to low iron. But my iron is far from low so not sure. TCP I have had something similar to the cold water feeling. I also always think a spider or bug is crawling on me and start wacking my skin lol.

Mama_Destiny that is really too bad about your husbands reaction : ( Is he in denial maybe, or he is simply uncaring? I find that because mine symptoms are "mild" to outsiders that I get very little support. My parents have been extremely unsupportive. Even with a diagnosis from the top doc, still nothing. It has caused me to detest my parents to the point of strong dislike. My boyfriend has been very supportive though. So atleast I have that.

Thanks guys!

I have some symptoms that do not seem related. Throwing them out there.

- My legs jerks sometimes.

- Face tingles

- Hand/Feet go numb easily

- Raw patch that comes and goes on my tongue?

- Body Swaying/Feel off balance (new symptom)

- Feeling like ground shakes beneath you

- A weird sizzling sound at the back of my neck... Gets worse when I am hungry ( weird I know)

- Lumps all along the base of my rib cage like round balls

- If I scrunch my face it like starts to tremble

- High Iron Ferratin levels

Yes I have been too many neurologist and other doctors. Not much found by neuro other than hyperflexia and positive hoffman sign. He said normal people can this too (previous neuro) If anybody has experience any of these feel free to share thanks!

I am so sick of the doctors too futurehope. I used to eagerly go to the doctors for help, now I know better. I tried to take a little break for a little while. It is draining on my finances as well. I have a small hiatal hernia I got told, but I definitely think it causes me symptoms. I can feel the pain when I eat and drink. I do not know anymore!