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dawnrulostParticipant
I thought I was finally over my yr long HELL. I’m def positive i have high ICP…. I took 2 weeks off of work & did not leave my bed(other than the bathroom)did everything it says to do for a leak. drank lots of water & caffeine, then on the 5th day it felt like my eye balls were gonna pop outta my head every time i sat up. SOOOOO I started back on the diamox, slowly at first 125mg 3 times a day,felt a little better, increased to 5 times a day, better yet. back to work i go :)…..later the same day I was getting out of my car & happened to drop a 20$ bill & of course it was windy, I ran after it …..maybe 20 feet. on the way back to the car my head started pounding in the back & sure enough within about an hr all those lovely symptoms came back…my nose is now leaking again. Oh yeah Dr. Diana ..the masto stuff…I’ve been on atarax 4x per day,for about 22 yrs. now for dermatographia. also I printed out the Driscoll theory to take with me, doc said he didn’t have time to look at it(right now) & commented “that’s the problem these days, people play doctor via the internet” He looked at me(guess the look on my face said it all, he said you don’t agree? I said well doc,i’ve had 18 ANA,9 hiv antibody(no i don’t have risky behavior),countless CBC & other basic blood tests, never to find anything in my blood, although i suggested i had high ICP w/leaks at 8 previous appts. starting many years ago, it wasn’t until I started research on the INTERNET did i get anywhere. silence….and of course a little smirk from me :p think i’m gonna put my daughter through med school, what’s a few more years….LOL.
dawnrulostParticipantBearcat…posture? can’t say it’s the best, although I do try to make a conscious effort. I’ve tried gentle exercising/stretching, seems like by the next day though it makes it worse. I also have loss of “lordotic curve” my cervical spine is completely straight, which would also explain why maybe I have,or what looks to be like, Chiari 5mm, i think due to my spine being straight it make it easier for the cerebellar tonsils to come down, put pressure on everything, and cause these muscle issues over & over again. You know what’s strange though….. when this outrageous pain/swelling is in my neck/shoulders…I have very little autonomic stuff goin on, then like clockwork doc gives me prednisone, which i believe reduces the swelling & within 2-3 days the autonomic symptoms come back with a vengence!!!! I started thinkin maybe(in my case) i could live with this pain,it’s horrible pain BUT, I’d rather be in pain then deal with the autonomic symptoms(I completely shut down)… maybe the swelling “holds up my head” to the point where my brain is no longer resting on my brainstem……. thoughts anyone????
dawnrulostParticipantBearcat…I can def relate with all that you mentioned, if i even rub my hand or elsewhere I feel sudden burning,then swelling. I’m currently in really bad shape, neck/shoulders are killin me/ arms are both blotchy & purple looking,hands/arms are very tight/veins protruding.I’m goin for yet another MRI on Monday b/c doc said the swelling/increased pressure in my head/neck may be cutting off circulation to my arms.
dawnrulostParticipanti have double white stripes(guess kinda like mee’s) and red lunulas on both thumbs, also all nails are rippled when they grow
dawnrulostParticipantThanks Dr. Diana, too many years now I’ve been dealing with this!!!!!!! I do have(what my doc thinks) is neurocardiogenic)** origin of autonomic dysfunction/ It just started 3 years ago…I just had 2 weeks ago,after years of complaining i might add, a heart monitor for 24 hrs. within minutes of being upright..my heart jumps to 120-140,& my local doc scheduled me for an appt. with Dr Eliot Wallack(philadelphia) 9 whole weeks after this was discovered NOT to be (figuratively) in my head. BUT I also have “acquired Chiari” & small brain stem srynx**I truly believe i have multiple spinal fluid leaks..outrageous pressure builds in my head,swollen optic discs & a funny thing happens, either i feel a sudden burning pain in the middle of my back(breaking through) OR weird sensation almost like it’s behind top part of my throat…then my left nostril starts leaking clear fluid & within minutes the “pressure feeling” is no where like it was minutes before….I’ve told this to 3 different local docs & they look at me like i’m nuts!!! Then the REAL fun begins….for days/sometimes weeks i can’t stand up for longer than a few mins. without the autonomic stuff… My question to you….How do we get these doctors to HEAR us??? & get them to believe that not EVERY patient that walks through their door is looking for attention,pain meds or needs anti-depressions drugs. I just can’t take it anymore …any advice would be appreciated! Dawn
dawnrulostParticipantlast appt. this was mentioned to me, my level D3 was only 4. taking 50,000 units per day.
dawnrulostParticipantdermatographia since i was about 15 yrs old (22 yrs ago),I remember the doc taking one look at what i could do with my skin…said that’s interesting & put me on atarax(hydroxizine) 4 x a day. my kids think it’s COOL, when they were little they would “write” on me. They are now showing signs…not raised yet like mine is, just red lines on their skin.
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