Is It Just Me?

Discussion in 'Fibromyalgia Main Forum' started by TaniaF, Sep 17, 2008.

  1. TaniaF

    TaniaF Member

    I've been having this problem for years and doctors can't give me an answer to what it is--

    I feel like my head floats, get lightheaded, sometime dizzy. I get sensitive to noise. My ears feel full sometimes. I have had spinning only on a couple occasions (not always). CT scan of head and brain-normal. MRI and MRA a few years ago--normal.

    The ENT says it's not Meniere's because I don't have hearing loss. I thought it was BPPV because I get sick from motion. I don't like to see things move in front of me. The ENT now says it is neurological.

    The neurologist in the past said it's disequilibrium due to inner ear. Contradicts ENT. He sends me to opthomologist.

    The eye doctor says it's migraine syndrome. Funny I do have scalp soreness and facial myofascial pain, but no throbbing headaches. Says you can have migraines with no pain.

    I think it is Fibro in the sternocleidomastoid trigger area. But no one listens to me and still no diagnosis from doctors.

    For over 20 years I get these symptoms--they wax and wane. However, one month ago I had gallbladder surgery and I had general anesthesia. Ever since then I have had these symptoms and they are not going away. Last time I had general anesthesia was in 1979.

    If anyone gets these head symptoms, please respond. At least I won't think I'm going nuts!!!


  2. tansy

    tansy New Member

    Hi Tania

    I have had three pre op assessments with anaesthetists in recent years and they recognised these Sx immediately. I was warned that if they have happened once they will happen again whenever I have a general.

    One anaesthetist spent a lot of time with me going over past problems and when I said that after my second general I felt as if some things had been switched and did not switch back he nodded in agreement. I was told they understand post operative issues better now. The reaction to my first anaesthetic was less severe and after about 3 months started to resolve.

    The Nurse practioner who checked my surgical wound had suffered similar Sx and it had delayed her return to work; then she had to work part time for 6 months but is now back to working full time. She does not have these DDs.

    I have posted an article by Margaret Williams here on mitochondria and medications (includes anaesthetics); and there's been many topics on after effects of anaesthesia. Patients with MCS have problems with anaesthesia and there is information of how to minimise them on various internet based resources - there may even be posts here.

    With regard to the aftermath of anaesthesia I found only anaesthetists understood them; it made a pleasant change to discuss my post surgical Sx with medical professionals who knew what I was talking about.

    Can you 'phone the anaesthetist who administered the drugs and discuss this with him/her?

    With luck these Sx will subside but it may take a while.

    Hopefully others will come up with other practical suggestions for you.

    tc, Tansy
    [This Message was Edited on 09/17/2008]
  3. monicaz49

    monicaz49 New Member

    oh my...i read your posting and can relate so much.
    I have experienced so much of what you have and have seen many doctors. My neurologist did the same tests which were normal as well. Only thing abnormal was my first exam. He thought i might have MS, but now isn't leaning that way.

    I too have had my gallbladder removed (as a good chunk of us ironically have). I too felt worse after anesthesia. I have heard others tell the same story. However, to be fair I felt my CFS before the anesthesia but very mild and not life altering. Ever since surgery and a short trial on SSRi's I became severely worse.

    My symptoms also wax and wane and can fluctuate in severity over time and also even from hour to hour. I have had the dizzyness, etc...but one thing you mentioned that I dont hear about alot is the MOTION SICKNESS you have. Mine is severe and keeps me from being a passenger in a car its that bad. If i am a passenger it has to be short, I have to sit in front with window down. Even just today I was nauseus in the car...and get this...I was DRIVING.

    We have alot of similar issues. If you'ld like to talk please look me up under the purple "support group" tabs up on the top of the page. I am in the bay area of california.
    I wish I could offer you advice...but i am stuck right now too and feeling very poor.

    Good luck and warm wishes :)

  4. greatgran

    greatgran Member

    Thanks for you post, I have this feeling often and can't find an answer. My doctor said inner ear, the ENT said Sinus , the neurologicist said panic attacks, Endo said blood sugar. Now if that doesn't get you confused.

    For me, I think it's a part of my CFS/FM. Sometimes my symptoms are so bad they put me to bed. I have had this off and on for 8 years but still can't get use to it.

    Having gallbladder surgery was added stress on your mind and body, could be one reason its hanging around so long.

    I know when I overdo, under a lot of stress, mine seems worse and last longer. This last "spell" has been since March.

    My anxiety is so much worse when I have this feeling, also my ears ring 24/7. Been to all the doctors and still not a clue what this is, that is why I think it has to be CFS/Fm related.

    I take xanax, which takes the edge off but sometings they don't even help. Its a miserable feeling and I sure can relate.

    Sometimes I get blurry vision.

    Don't have a answer but you are not going nuts!!

    God Bless,
    [This Message was Edited on 09/18/2008]
  5. TaniaF

    TaniaF Member

    Hi all,

    Thanks for responding so quickly.

    I went to a neurologist today and after a really thorough examination, he said I have atypical migraine syndrome. He first said "you will think I'm nuts when I tell you this" but from my symptoms he concluded this. He said you don't even have to have pain to have migraine syndrome.

    No meds only to treat the symptoms--I take Meclazine or Zofran for nausea and just tylenol for pain when I get a headache (and I do). I use Biofreeze gel for my muscular aches in my neck and shoulders.

    I now have made an appointment with a DO doctor who is integrative and he is the one who tells me what supplements to take and does trigger point massage on me. It will be interesting to see what vitamins might help the migraine syndrome. Heard Riboflavin (a B vitamin) might help.

    The nero didn't know about the anesthesia. I need to contact the hospital to find out exactly what med they gave me. It really made me nauseous and I need to chart this on my own records at home.

    BTW. I pulled up a symptom list from CFIDS organization with symptoms and I have so many. I do have a low immune system (neutropenia) and low IGg levels. Many of the symptoms above are also on the CFIDS list.

    Please keep this thread going with any new info or others that have these symptoms.

  6. TaniaF

    TaniaF Member

    One more time. Do you have these symptoms too?