Running out of ideas

Discussion in 'Fibromyalgia Main Forum' started by MandaJ, Jun 5, 2009.

  1. MandaJ

    MandaJ New Member

    I've had a headache for 19 days straight now. I've been in the ER, hospital, seen a neurologist and been on a slew of drugs to no avail. I'm having focal seizures and nausea/vomiting.

    I'm looking for ideas as to what it might be ... I'm really pulling at straws right now.

    Here is what we have ruled out
    > Swine flu
    > Diabetes
    > Bacterial meningitis
    > West Nile Virus
    > Kidney failure
    > Liver failure
    > Tumors
    > Bleeding
    > Clots
    > Trichanosis

    Here is what we are checking now
    > Lyme
    > Thyroid
    > B12
    > Rheumatoid factors

    Here is what I'm on right now
    > Celexa (old)
    > Amitriptalyn (old)
    > NuvaRing (old)
    > Phenegren (new)
    > Topamax (new)
    > Lidoderm patches (new)
    > Predinosine (new)
    > Toradol (new)

    I can barely function at this point and my memory is shot. I'm out of ideas and so is my doctor. I'm going for an EEG on Monday, but I'm worried I won't make it much longer. I can barely work (and my boss is being a big jerk) and I can't even enjoy my life right now. Please give me any and all ideas you may have.
  2. frickly

    frickly New Member

    I am so sorry you are in so much pain and that I can offer little help. I get migrains on occassion and know it is associated with my CFS. They are always occumpanied with swollen lymph nodes under my jaw. I think the migrain is just a symptom of my CFS acting up which results in alot of inflammation in my body. What about a strong course of anti inflamatories? Sorry I can't be much help but hope that you get some releif soon.
  3. 3gs

    3gs New Member

    Has anyone considered your meds? Isnt Nuvaring birth control?

    Do you have CFS or Fibro? Myofasical Pain? Have they considered a muscle relaxer? This helps with my headaches and my upper cerivcal chiro.

    What about diet?

    I hope u get relief soon,these headaches can be horrrible.
  4. outofstep

    outofstep Member

    1. Get checked for Chiari Malformation-would probably need MRI

    2. Get checked for encephalitis from herpes viruses (Epstein-Barr and HHV-6). Blood tests can be done to check circulating levels of virus first, but you'd need a spinal tap to confirm encephalitis

    Good luck-I hope that this helps!
  5. AuntTammie

    AuntTammie New Member

    I know someone else suggested it, but I want to reiterate that several of your meds (alone or in combination) could be responsible for the headaches
  6. Janalynn

    Janalynn New Member

    Oh you poor thing!! I've been having THE worst headaches of my life, but only lasting 48-72 hours, not 19 days! Are these migraines or other? I know that can make a difference in how to treat. The migraine meds will stop your headache (supposedly), but will not do anything if it's not a migraine. - That's how I found out my headaches were not migraines.

    I'd been on Topamax for over a year. Didn't have one headache for a year, then wham - got the worst ever. I know Topamax has to be in your system a bit before it starts working, so maybe giving that some time may help.

    I had the CT scans etc cause I really truly thought my head might explode - - an aneurysum at the very least. Nope - no bleeding. I couldn't sleep, when I did, I'd wake up with the same pounding, like someone had my head in a vice and as hitting me with cement blocks.

    Funny thing though - I'd been prescribed Klonapin about 8 months ago from a rheumy I see 2x a year - for Fibro. I really don't take it - have the same bottle I think, even thought the script says 2x a day.
    Well I took one when the start of my headache came on and I couldn't believe it - it helped!!!
    (NOTHING else did, including pain meds). I wonder if it's not relaxing the blood vessels or something.

    I've been able to ward off some headaches recently by taking one (or even half).

    My doc referred me to a neurologist - (still need to make the appt), but she said they are doing new things now for headaches, including Botox etc.

    Headaches are the worst. I have horrific fibro pain in my body, but the headaches just knock you out. I hope they can get to the bottom of what's going on with you and in the meantime find SOMETHING that gives you some relief.

    Could any of the "old" meds be causing headaches in combination with each other? I'd look up each of them on "ask a patient dot com." (type in as one word) or look up drug interactions on

    Just wanted to mention about the Klonapin - it was just an accidental finding that worked for me. Thank goodness cause I could not take one more minute of those horrendous headaches.

    When I told my Dr. that I was getting a headache 3 to 4 times a week her eyes just said it all...that is WAY too many for anyone. yeah, tell me about it.

    Sorry about your terrible pain!
  7. Iamwell

    Iamwell New Member

    I just looked up Celexa and one of the common side effects is migrane. Just because you have been on a mediction for a while dosen't mean that it can't be the cause of your migrane.

    I would take only essential medications and see if your migrane goes away.

    Also look at your diet and cut out all artificial sweeteners. Check labels.

    Look up every medication you are taking and see what the side effects are.

    Feel better soon.
  8. MandaJ

    MandaJ New Member

    I woke up Saturday morning (after posting this I guess) with hardly any memory of the past four weeks. I don't remember having a headache, I don't remember being in the hospital and I don't remember any thing I've done in the past four weeks.

    The (insert four-letter word here) neurologist was paged three times to call me, but still hasn't called back. My family doctor said to wait for him to get back to me. Thank god my husband has been able to fill in the blanks for me. (Except the Mary Kay party ... He has no clue about what happened there)

    I'm so scared. I go for a previously-scheduled EEG Monday morning. I'm glad I have a date book so I can look back and kinda piece things together. Also, I've kept a journal which has helped.

    Oh, and the headache persists. I'm scared.
  9. Nanie46

    Nanie46 Moderator


    Sorry to hear that you are suffering with a headache for so long.

    I am glad that your Dr's are looking into lyme as a cause...however here is what concerns me...

    99% of Dr's think that a negative ELISA or a negative western blot done through their local lab rules out lyme.

    Many cases of lyme are missed because nothing could be further from the truth.

    When my symptoms worsened in Feb 2008 (when I only had a fibro diagnosis) I had a headache for 4 months.

    Eventually I did my own research and discovered that the cause of all my symptoms was the bacterial infection, borrrelia burgdorferi (lyme).

    Chances are your lyme test will come back negative and they will dismiss the idea.

    Testing is very flawed, especially at labs other than Igenex in CA.

    Prednisone is the worst drug that a lyme patient can take. It is an immune supressing drug and allows the infection to flourish.

    It also can prevent antibodies to lyme from showing up on the testing.

    A person should be off prednisone for at least 2 weeks before being tested.

    Please consider getting your Dr to order a western blot IgG and IgM, test #188 and #189 through Igenex.

    Order a free test kit by calling them or emailing customer service. The kit comes with the test order form, and instructions for the lab and a prepaid fedex package and label.

    Blood should be drawn in the morning on a Monday or Tuesday so that it arrives at Igenex via 2 day fedex before the end of the week.

    Blood should be drawn at a lab that fedex's labs out that day.

    It is sad how very little Dr's really know about lyme and how to diagnose it.

    If possible, you could print the following paper by a lyme expert and give it to your Dr....

    It's great that he is considering lyme, but I'm worried that he will rule it out with just a negative test, which should never be done.

    Lyme is a clinical diagnosis, based on history and symptoms. It can be supported by labwork.

    Many, many people who have lyme, have had negative tests.

    Even my Igenex western blot was officially negative because it said CDC negative and Igenex negative.

    Those are only reporting criteria and should not be used as diagnostic criteria.

    My first western blot through a regular lab showed only band 41. My Igenex western blot showed many bands present.

    Igenex tests for all bands and other labs do not. Other labs leave out some very important lyme specific bands which is incomplete and inaccurate.

    Many Dr's just do an ELISA test and never even go beyond that when it is negative.

    My family Dr insisted that if I had lyme, my ELISA would be positive.......wrong!

    Please feel free to post for me on the lyme board.

    I hope you get a proper diagnosis soon and feel better.

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