"Lizzy Borden Headaches"....Survey....Please respond..possible answer

Discussion in 'Fibromyalgia Main Forum' started by scotlandrose, Apr 5, 2010.

  1. scotlandrose

    scotlandrose Member

    I just love my CFS! I get all the bad usual stuff, plus the really weird and rare!

    Every so often, I get one of those horrible, head exploding headaches that last for a day or so. Diamox and phenegren help, but not much.

    I am a music therapist and loved research class, so, everytime one happened, I took notes on everything possible: weather, allergies, food, anything. Not much help, but found that i get them only 2 times a year.

    I think I have found the cause, working with a specialist...not going to say anything more about that. I do not want to taint the results of this survey.

    I hope and pray not many of you get these, but i know some do.

    For purposes of the survey I need to know only one thing:

    What time of year do you get these headaches, if you remember.

    If I get enough matching results, I will find a doctor to do further study.

    I beg you to give me a time of year, or as presice a date as possible!

    Thanks for your participation.

  2. victoria

    victoria New Member

    (my really bad headaches, feels like sinus tho no infection or anything else, were pretty much 24/7;

    Despite years of trying to figure it out, there was never a pattern as it increased in duration, intensity, and constancy.

    After going thru the MP phase 2, it was greatly reduced (TG!), now get it on average a few times/month but still do not show any pattern to anything. I'm guessing mine were Lyme related, it is one of the symptoms.)

    [This Message was Edited on 04/06/2010]
  3. marw

    marw New Member

    Are you sure this is not Migraine? There are many types of Migraine. Your headaches sound exactly like my Mothers's which also diminished after Menopause. In her case they gradually became less until she no longer had them. She refuse to call them that, and also refused to go to a doctor for them.

    However, I seem to have inherited them. Nothing, not Fibro, not surgery, absolutely nothing is as bad as a Migraine!

    But now there is help. A medication called Imitrex, which is use as an injection, will take the Migraine down in about 10 minutes--as though it never was! It is like a miracle, this medicine. Now, it comes in pill form, and there are many other versions of it. The class of drug is "triptan" and any of them will probably work, but it is best to find the one that works best for you individually. Word of warning: You should have a complete check up before using this med. You cannot use it if you have anything very major wrong with either your heart or lungs. I don't know if there are any other conditions that prevent one from using it. I have heard of rare occasions where it didn't work, but they would be extremely rare.

    Good luck. Marw
  4. scotlandrose

    scotlandrose Member

    Thanks for the replies. My docs all said only a few patiants get these headaches. I see one of the top neurologists in the country, and he said it is not migrain, cluster, or anything else. There is an article I found in some journal, it is actually caused by frontal lobe brain swelling.

    I only get them twice a year, thank God, and take Diamox and Phenegran. It helps some. It feels exactly like there is an axe in my head, right in front. Lasts about 18 hours. Only met one other patient with this. As a therapist/reseacher, I finally found a common connection for me. I was hoping it matched others and I could help somehow.

    Anyway, thanks for the imput. I am very glad you do not know what I am talking about.

  5. Misfit101

    Misfit101 New Member

    Ive had commode hugging migraines most of my adult life. They varied in frequency and intensity. At about 35yo, I had them an avg of 3-4 times a wk. Sensitivity to light and sound. Had my way of dealing with them. After about 8 yrs of dealing with them, they all but stopped. I get 1 maybe twice a year now. I am peri menopausal, if that helps. Taking HRT the last 6months. 52yo woman.
  6. shelley123

    shelley123 New Member

    ive had this particular headache for 3 weeks solid, it increases and decreases in intensity throughout the day but never goes away!! the pain is awful, feel like my head will explode, sometimes its like a burning sensation and makes shoulders neck and arms ache. have had c.t scan waiting to see neuoro! have f.m and elhers danlos syndrome and having major realapse at moment so hope the headache is down to 1 of those and not something more sinister, let me know what you think. thanks, shelley.