Off to the ER again, both Monday night and Tuesday...

Discussion in 'Fibromyalgia Main Forum' started by DeborahLynn, Dec 24, 2008.

  1. DeborahLynn

    DeborahLynn Member

    Thanks to everyone for your thoughts and prayers. I went to the ER again with seizures on Mon. night and last night, again. This makes five times to the ER in the past 30. This time I went to Memorial, and was seen quickly both nights.

    Monday night, I was seen quickly and made comfortable (their gerneys (sp?) at Memorial are much more comfortable, and they put their ER patients in a semi-private little room with a curtained glass front). Even though I was seen quickly, they still waited until after a CT scan and blood work before they would address the seizures.

    I was contorting and seizing almost the whole time, but because I was still conscious, I think they didn't take me as seriously as if I had been unconscious. Again, I had to wait for four hours until they finally gave me something to make the seizing stop. And the only reason they gave me something then was because, as they were getting ready to discharge me, still seizing, I had to tell him, "I can't keep on like this; they won't stop, and my body is in so much pain already, with my my muscles contracting and seizing so tight, I can't go on. I have been seizing like this for a total of five hours straight, and you're going to send me home without helping them stop?" All the while I was talking, I was having a difficult time speaking because my face and body were jerking and contorting. I was in tears again. They just didn't get it. Finally, the doctor ordered some Ativan, and were sending me home. I told them that I wasn't going to go home until I saw that the Ativan was going to stop them. In about 20 minutes, the seizures finally stopped.

    The next day, which was Tuesday afternoon, I went to my follow-up doctor's appointment at 3p.m. As we were pulling into the doctor's office, I started seizing again. Again, it started with small tremors, but by the time I saw the doctor, I was convulsing. The doctor wasn't my usual MD, but he was very nice and helpful. They started working on getting me in to see a neurologist as soon as possible, and gave me a prescription for Diazapam (Valium). The doctor said that if the Diazapam didn't work, we needed to go straight to the ER again.

    It took a while to be able to get the prescription, because the first drug store we went to that was closest to the doctor's office didn't have any in stock, so we had to drive all the way back to Ooltewah to get it. I took a dosage, and waited for it to take effect. It never helped, so by eight o'clock, we were off to the ER again. They took me in quickly again (I like that about Memorial), and this time different doctor saw me. (I caught a glimpse of the same doctor that saw me the night before, but thank You, God, a different doctor treated me this time.) He was much more understanding, helpful and caring. He gave me an IV med right away that started to calm the seizures, and gave me a prescription for a sub-lingual med.

    It is now 4:47 p.m. on Wednesday, and the seizures are starting again. I have taken the sub-lingual med, and am waiting to for it to take affect.

    I hope and pray these things will stop before Christmas! We have family coming in to town... Through this whole ordeal, as frustrating as it has been, when I have reached out to the Lord for help and strength to continue on and not give up, He has been so faithful! I'm so glad that since I had more seizure episodes, at least one happened right in the doctor's office, and he believed me! He really is trying to help!

    Thanks for lending an understanding ear, and I send my love and Merry Christmases to all! Debbie
  2. PainPainGoAway

    PainPainGoAway New Member

    I am so sorry to hear that you are still having problems...I read your other posts but will have to go back and refresh my memory.
    Has your regular physician sent you to any specialists since this started happening? I had something odd happening to me that was more gradual but I ended up in the ER a few times over about a two year period. Then symptoms got to where they didn't go away. I was not having seizures (that was their first assumption), but awful tremors and I looked like I'd been drinking a LOT (don't drink at all!)...
    Well, eventually it was discovered I have a RARE genetic disease called Spinocerebellar Ataxia Type 3, an inherited disease that sends a shot of adreniline through my body just typing out the words.
    I don't want to imply that's what you have, but there are like 28 different kinds that are genetic, several that are not, but it basically is a problem in the cerebellem. Different kinds produce different problems. So I get spastic muscles, tremors, twitches, and at times appear as if I am drunk or out of it.
    I would hope that you might be able to get your doctor to send you out to various specialists...they sent me to several neurologists, endocrinologist, neuro surgeon, and finally figured it out.
    So don't give up-- they may think it's just stress or something emotional (could be, no blame if it is, you just want help), but it could be anything, even a cyst on your brain. They looked for tumors, cysts, did many MRI's, spinal taps...checked me for allergies (have lots), I got mentally evaluated...I did everything.
    I was sad to get such a diagnosis but it's not as bad as I first thought, very slow in progression and some of my issues have gotten better, even if it's only temporary, and only considered management.
    I felt like I should write you because although I have no idea what you have, from doing research about my disease, I do believe it may be something totally unrelated to FM/CFS.
    Do you have ataxia? Balance problems even if not seizing? What showed up on tests so far?
    Take Care,
  3. tonakay

    tonakay New Member

    God is good but I feel so badly for you! I'm praying you get some answers soon, how scary!

    God Bless,
  4. efaye

    efaye New Member

    Tennessee.I'm going to email you at your personal email. You got my attention when you talked about Memorial and then Ooltewah I thought this has got to be Chattanooga. I hope you get help soon for the seizures and get a positive diagnosis. Thanks efaye
  5. msbsgblue

    msbsgblue Member

    I am so sorry to hear this. A friends daughter has this and they are determining that it has something to do with her Arnolds Chiari.
  6. jaba520

    jaba520 New Member

    what you are explaining doesnt sound like a seizure to me. my son has epilepsy and he never has been concious and talking and crying during a seizure. you need to have extensive testing done, im not sure what it is you have but im quite sure it isnt seizures.
  7. DeborahLynn

    DeborahLynn Member

    ... and because of my history of stroke, craniotomy, and seizures, this neurologist says that what I'm most likely having are complex partial seizures, and she recommends a 48 hour EEG done. I am relieved to finally be able to talk to a neurologist and find out what's wrong. I'm not feeling very good now, so I must go lay down. Love to all, Debbie