Monstrosity

I tell people that I have a neurological disorder that my blood pressure and heart rate dont regulate properly and I could possibly pass out (knock on wood I only get presyncope).

I did it a lot when i was first diagnosed. I noticed it helped a lot then. No pain or discomfort. The only time I had an issue was when I had put lotion on prior to the apt. When he stuck the needles in it burned slightly. Again that was only one time though.

Good for you and thanks for posting this! I enjoy reading the positive posts like this!!!!

Yes I can drive and no I dont faint. I would loose my mind if I couldnt drive. I love cars and love motorcycles. I did sell both my bikes when this first started. I've contemplated getting another but seem to talk myself out of it...

My allergist put me on Prylosec OTC and Singulair and its helped a lot with the gut issues along with the breathing.

Late spring/early fall I began to toss the idea around of Chiari Malformation. I contacted my Neurologist and had him look at an old film and he said they saw a 3mm drop in my cerebral tonsils but it was normal. I began reading a lot of mixed things about the drop. At that point I contacted NY Chiari institute and they had me fill out a questionare along with sending them my films. They called back and said when do you want to come in for your apt. I freaked out at that point and told them I would call them back. I began researching local Neuro Surgeons to see. Neurologists seem to be clueless on Chiari unless they see a huge drop. Anyways I came up with Viollette Racinos at the Cleveland Clinic and Dr. Gardner at UPMC in Pittsburgh. Dr. Gardner wanted an updated MRI. He also wanted it to be a cineflow. The MRI showed good flow but a drop of 4mm. Dr. Garnders office saw me in within a few weeks (late August). He felt my drop was within normal range. At that I left his office both relieved and discouraged. I thought I might have found the root to my autonomic dysfunction, flip sideI was not going to have a horrific surgery on my skull. This past Tuesday I went and met Dr. Racinos at Cleveland. She was very nice and seemed to care. I expected her to say no Chiari is not your issue and send me on my way. This was not the case. She said I'm borderline Chiari. She said that treatment (surgery) is very sketchy with individuals such as myself with a slight drop. She ordered a full spine MRI and I will have that on the 29 .

I'm not sure if it varies state to state. I know for Ohio Dr's have up to a month to release records.

every time the weather changes I feel like crap. I've noticed that in the fall I'm the best. Winter is horrible and the mid of summer is rough as well.

good read, thanks!

its very encouraging to see posts like this, thank you!

second opinion for sure

I havent been on in a while (moved into a house a month or so back and have been BUSY). Anyways to answer Wendy's question on how I related to Bruce Wayne/Batman in the movie. ***Spoiler alert for those who havent watched and are planning on it*** When the movie starts out Bruce Wayne is broken, he's a shell of what he used to be and Batman and he have been MIA. (This was my first year after diagnosis). I became a withdrawn and avoided people. Then he gets his @$$ royally kicked by Bane and is thrown in the hole (This was the past winter and I thought I was going to die. The @$$ kicking I got was from being hooked up to an IV and pumped full of crap for 4 days straight 4 hours per session, and the 3 different Beta Blockers that made my fatigue even worse and my lung function next to nothing, oh and lets not forget the effexor that gave me full body myoclonus jolts. To put it bluntly I would've rather had Bane physically beat me up than the beating that the so called Dr's and drugs gave me). Next came the attempts to get out of the hole. I feel like that is where I'm at now. I'm working out, trying to moderate my diet and do as much as I can around the house and with friends/family. I'm also one determined S.O.B. I plan on getting out of the hole sooner than later. I've had a few attempts and came up short. The most recent was looking at Chiari Malformation. I have been told 3mm now I'm being told 4mm but over and over I've been told its not whats causing my issues, I also tested positive for HLAB27 but X Rays showed no Ankylosing whatever its called. To look even deeper into the movie and why the relation my life prior to Dysautonomia I was fearless, bold, tough, etc... In the prior two movies Bruce Wayne was all that and some. Now I'm more of a recluse, a chess player (have to plan everything to the best of my ability), and lets not forget moody... LOL I need to go to bed, I'll check back in tomorrow. I was hoping when I logged in tonight someone would have posted the miracle cure has been found! Never give up!

Recently I saw a Neuro Surgeon after an MRI I had. The MRI was a Cine Flow MRI and it was being used to rule out Chiari Malformation. I was given mixed feedback from the Doctor... Needless to say he felt I should have an MRI of my neck. However I get bad pain in my neck, across my upper back, and my lower spine bothers me. So the question is he wants one done of my neck, should I push for a full spine scan? Can they do this, will the insurance co authorize it?

I work 40+ hours each week. I have drove the whole time. Granted I've never passed out and if I'm feeling that bad I dont drive fast or far.

How did you get your Dr. to agree to do this test? This thread actually got me thinking and I called the Chiari Institute today, but was on hold for 30 minutes just waiting to speak to anyone. So I gave up and hung up. It says on their website to fill out a questionnaire and send it back to them and they'll be in touch. It's interesting because a lot of the symptoms they ask about on the questionnaire fit. I think it's a worthwhile thing for POTS people to look into. What exactly does the cineflow look at? My family doc agreed to it. I could tell he wasnt following me at all when I stated my case. He admited that this is way over his head and asked what he could do for me. He agreed to order the MRI. My advice woulc be contact UPMC's Neuro Surgery Dept. Also Look up Dr. Oro in Colorado. I was on hold for a while with Chiari Institute but they were the ones who looked at my MRI and questionaire and said they saw an issue... Still I dont want an aggressive doc that is knife happy with surgery. IF I have Chiari I will be sure to have multiple opinions on whats best... Yes the questionaire is scary to the fact its describes a LOT of POTS symptoms. I'm not saying that everyone has this but its worth rulling out. I would highly recomend looking up the book Conquer Chiari and the website. Lots of good info... Remember follow your gut!

Follow your gut...

Next Friday I go for a cineflow mri with and without contrast. The Cleveland Clinic is doing it. I requested a large person MRI to cut back on the clastraphobia.

Issie thats interesting that drug is helping. Keep me updated on how you are doing with it. I will keep you informed as things develop. Yogini just as that mom had a gut feeling I do as well... You said it always follow your gut, always! Naomi a regular MRI should show a drop. However the drop is only part of what a true Chiari specialist will look for. They are also looking at the spinal fluid flow and pressure. I'm still doing research and if you want further videos look up Dr. Orro on youtube. I will post them when I have time. I also ordered a few books off Amazon.com that should be here this week. As I find out more I'll update this thread.

Good for that mom, she deserves a gold star! Looks like it loaded up fine for everyone. My only point for everyone to think about is most of us are not at our root issue. POTS/Dysautonomia is a collection of symptoms, not a true diagnosis. Or should I say no diagnosis code. My one neuro wont let me use either word in his office. With that said you can draw a line in the sand but feel you shouldnt when it comes to ones health. Why do some meds work for some people while others dont??? Most of us are not textbook cases and a lot Chiari patients arent either. Cleveland Clinic re-looked at my mri and said I had a 3mm drop and it was nothing to worry about. Most places say you need to have a 5mm drop to be considered a Chiari 1 Malformation. However its based on spinal fluid pressure flow and symptoms. I called NY Chiari Institute and long story short they saw an issue and wanted me to take the 9hr one way trip to them... I then talked to UPMC and they wont give me an answer but said I need a cineflow MRI w/wo contrast. I'm attempting to do so but insurance and lack of knowledge from dr's has made this a slow difficult process.

Not sure how many of you saw the movie but **** it was good! I felt like the story was a direct reflection of me and where I'm at with my medical issues! For anyone that likes that kind of movies (superhero, good vs evil) go see it! I know some feel a negative vibe over what that moron did in Colorado but that was an isolated incident and that could have happened at any movie. Its a great movie I've watched it twice and I might see it a third time while its in theaters. I'll for sure buy the blu ray when it comes out.

I'd like to hear your opinions on this video.

I was just told today i tested positive for hla-b27. I'm having x rays done next week.

The past two winters I dropped about 30lbs. I put it back on each year by around June. I typically weigh in 190-200 standing at 6'1. I'm attempting to gain extra weight for this coming winter.

count me in, however mine last for weeks not days

I'm very confused now... I was told Friday that I had a 3MM drop and it was nothing to worry about... However I keep reading and have talked to other docs (not neuro's) and they feel thats a huge issue. The medical field seems torn on this subject. I dont know what to think at the moment.