I woke up this morning at 5 am after 4 hours of sleep I m jerking and can not...

With my knock knees and double jointed arms, creepy skin, wrinkle-none face, and all my internal conditions.....I watched House, over and over...all of it, and I wrote down each weird condition per show. Then I'd look them up on Wikipedia. I have SO much research in my computer and printed out! So Dr. House helped me find my Chiari, and then I found your group several years later, when I watched it over, again, and he mentioned EDS. I came here and found people like me!! Thanks so much for being here for me, I don't have anyone else!)

Whew. Where was I?

Ok. Tongue, twitches and sharp pain,

Migraines and neck issues started 6 months

I found a compassionate PA at a clinic after I moved here, and for 6 months she refilled all my meds, and life was as good . Then I had to go to a Pain Clinic. Those guys Don't Give a Shit. At least in 10 years I went to 3 different ones in Utah and 3 here in CO, and only one was on the ball. He's the one who ordered my Neuro to do nerve testing, and I tested positive for BiLateral Peripheral Neuropathy. What did my Neuro say? "Well we don't know whats causing it, so we will just have to monitor my condition and see what develops"..... Hello, DOCTORS!!.I have a Chiari! They don't have to look it up, I brought hand-outs!! Fwok. Sorry.

I am usually, calm, nice, and cheerful. I just went down to feed cats and my arms are flying around, I'm twitching hard all OVer....I wonder what will happen if I have a full seizure! I will probably choke and did from this fat

I tongue and my narrow esophagus. I really appreciate you all! I should have made a DOCument out of this but I was SO ANGRY that I needed to talk!

I wrote it all in my day book (it took up 3.days section)& spoke to the other Dr. (not who I saw).at the Pain Mgmt.Clinic last week. That was the other story about how all the Drz are refusing to prescribe diazepams with opiates at all. So No More "Momma's Little Pills", and I have turned into a jerky, grunjey looking Cat Lady covered in fur, sitting with my legs up so my feet get blood AND return it, with stuff all around me. My room is 9x9. I tried to work in here (Jewelry Des).and to finish my SS claim, still not done! I look like a hoarder but there is neatness inside the baskets and boxes!

Sigh. The doctor called and I told him what needed to be said. I'm glad I had a short speech prepared. He said "we don't prescribe, and we dont take Medicaid". To which I said,

"but, SOMEBODY HAS TO HELP US PEOPLE WHO FALL THROUGH THE CRACKS!!!". To which he says, "I will have Dr. Checa's MA, Tami? Call you back.(2 hours ago...I could be dead by now, several times!). I told him the thing that I was upset about was that by not refilling meds he was changing my dose, and I lost 60 mg. Of morphine, and 15 mg Clonazepam per day from my meds; they should be closely supervising me and be more Doctorly!

%d comments
  • Aaaahahblubbbahhh!

  • Oh that's not good! Can you go to an

    ER? How long has it been like that?

  • My sister had a horrible reaction to an antiemetic, similar to what is happening to you. They gave her an anti-Parkinson's injection and it stopped.

  • Most days for me

  • Your tongue is swollen and you are jerking uncontrollably?

  • No dry mouth. ER Doc says seizures.

  • Oh that's horrible, not fun at all!

  • EDS does have a "fun" special twist that some of us get which is a kind of seizure which happens in a different part of the brain than where neurologists look for 'normal' seizures - so, they miss them - A LOT ( unless they know where to look and what to look for ).

  • Next month I go see another neuro doc.

  • Sean, do you get both kinds ( the "little shiver" or "sudden jerk" types and the "you-over-did-it"more grand-maul kind?)

  • Also, do you get the weird goosebumps after the shiver kind, too?

  • Yes yes

  • ((BIG HUGS)) I think we're living parallel lives =/

  • First started in my teens. Never diagnosed.

  • Use to have wicked migraines with them. Not since mid 20s.

  • My migraines are so bad that they are the "aura" kind that can become life threatening. I will go blind, deaf, or dumb ( or any or all of the above) during them. I've been known to clutch my head screaming... Mine were the worst from ages 16- 28, but I've always had them. I've just gotten better at managing them. The heat wrap on the back of the neck with ginger tea does WONDERS if you get it in at the first signs

  • Same here. They just stopped. No reason.

  • I am 51 now. Headaches of any kind are rare.

  • 40's here, and they are only 1-3 times a month or so , now

  • I would get them in school. They told my parents i was on drugs....lol

  • tongue could be allergies - and do you take magnesium supps ? couldbe low

  • Do you take Reglan or any other drugs that can cause tardive dykenesia/dystonias?

  • Anyone else worried that Diane hasn't been back here since her post?

  • Muscle twitches, serious ones, also can be allergies/MCAS or exacerbated by them; seems that way with me - maybe due to swelling pinching nerves.