Has anyone been diagnosed with dysautonomia? If so, what doctor gave you this diagnosis and what were your symptoms? I have been diagnosed with POTS, but my headaches specialist has taken interest in some of my other symptoms as well as my headaches.
I have been complaining to my NL about a burning feeling in my brain forever and it feels like my brain is bouncing off of the inside of my skull.
My H/A doc said it seems like I have low CSF and that may be causing those type of feeings. She has been concerned because I am constantly dehydrated. I can drink water and gatorade all day long and still feel the need to drink more and still be dehydrated. Something is going haywire....I know it. I am just hoping that she has got it all figured out. She had to look over all of my old reports etc, then she is going to give me a call. I am anxious to see wht she has to say.
I am thinking all of this stuff goes hand in hand, but since decompression, I am not as quick at putting the puzzle pieces together as I used to be. It is very frustrating.
Have you seen a Cardiac electro physiologist? I know you have been diagnosed with POTS. I have been hospitalized twice in two weeks for the exact symptoms you just named. After a Incredible NL Eval & Cardiac Electro work up. I was correctly diagnosed with POTS. I was always dehydrated, passing out & getting concussions, word blindness, brain pain (even though that is impossible). My BP & Sodium level was incredibly low. It was a vicious cycle. Dysautonomia is just variations of POTS. I never imagined these symptoms were possible.I lost my mind & independence in days Please see a Cardiac Electro Physiologist. He studied the electrical impulses of my brain and heart and other organs. I have to make alterations in my lifestyle, but am so happy I am going to be okay. It does all go hand in hand. I promise my symptoms were exactly like yours, except I was having cognitive problems due to my chronic dehydration. I am still weak, but am so happy I am not loosing any other abilities.
My 15 year old daughter has POTS. Since 2006 she has had to become very aware of her system and do small things that will illeviate symptoms. Salt intake helps, electrolites (Gatorade), lots of water. Her cardiologist has her take Florinef when her symtoms are at a peak. It seemed to always help until the Chiari symptoms started lately. I hope you can get help to control the aggravating symptoms.
Thanks for all the responses and info. I really appreciate it. The last few days have been the worst! I can't even lay down flat to sleep. I have to stay elevated or the headache is just unbearable. I can't stand it. I never imagines that post op I would be having this many problems. I am going to talk to my NL on Monday and to my HA specialist this week about looking into this futher. I need to get some quality of life back. It seems like as soon as I think one thing is getting betrer, another pops up. Thanks again. I will keep you all posted. Have a great day!
I am not on any meds for the POTS currently. It had seemed to come and go and the NL and cardiologist were thinking it would pass. So, this morning I had an appt with my NL and it was really nice out. We decided to walk up to the entrance at GMC on the outside (up the hill.) I got half way up the hill and thought I was going to pass out. I couldn't catch my breath, my head started to pound and I thought I was going to pass out. It scared the hell out of me. I had episoded before of shortness of breath, but nothing like this. Glad I was there. It took me a little while to recover from it, but the headache still has not gone away.
My NL has me sat up for a Holter monitor on the 7th for a few days and he wants me to "aggrevate" myself while on it. Won't take too much. He is definitely more concerned now than before, but I have a tendancey to blow things off and down play things. So, a lot of it is my own fault, but I feel like all I do is complain. I HATE CHIARI!!! I am soooo sick of Chiari making me sick! Ugh! Lol.
I started reading information from pots place last night and found that my mitral valve prolapse may be directly related to the POTS, Chiari etc. It is crazy how everything is so entwined. I had no idea that the prolapse could have been related! Great site with a ton of info! Thanks!
He is going to wait for the Holter resutls and then send me back to cardiology. When I see him I am going to ask him to set up an appt with a cardiac electro physiologist. I just want it taken care of. I am hoping that getting this straightened out may even help my headaches.