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Nothing seems to work for the Migraine pain

I almost at my wits end with Migraines. I have been almost everywhere twice and have tried just about everything including medication, nasal surgery, Mayo clinic, Diamond Head, Cleveland Clinic, and still daily pain 8+. Female 55 years old and need help.

Any Suggestions?

Regards,

Lisa Smith

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Comments

  • Ellen.S
    4 years ago

    OK, some symptoms of this awful disease is short term memory loss. Apparently my last 3 day episode with hypothermia followed by migraine has contributed to this. I can not remember where I left my last reply on this site. It was regarding my Cefaly device. I will start over.

    Lisa, I can really relate to your situation. I recently had a Brain MRI (my Doc insisted) to rule out other things. But after 27 years with the same but changing symptoms, I knew that my headaches were “MIGRAINE”. This word now used to describe any and all headaches by our contemporary society.

    I was thrilled to hear of any new developments in treating this terrible affliction, so I bought a Cefaly device, even though I believe I have Allodynia and no regular Aura.
    About 2 months ago things changed. I did have a few visual Aura symptoms. My peripheral vision would have pixilated dark squares and then some flashing sparks of light. This has happened before, but not often.

    I have other predrome hints like; food cravings, irritability,sensitivity to light,sound and smells. And for the last 10 years an absolutely sleepless night with hypothermia prior to the onset of the migraine.

    I have tried all short and long acting Tryptans, and only Amerge used to work. When that stopped working I was desperate. Why? Because I am now allergic to all opiates and many other medications. No pain pills.

    I started using my Celfaly in October. It was very uncomfortable, but I was determined to try it for 3 months. Almost immediately I noticed that my usual weekly migraine was not the 8-9.5 it usually is. Then I noticed that the second one that usually followed was gone. Now I had only one migraine per week, and only one short acting Tryptan worked in about 4-6 hours. That was an improvement for me.

    Recently I accidentally broke my left foot and had to slow down and remain inactive even more then usual.

    About one week ago my weekly migraine was again a 8.9 or higher, if you count that it never goes away. For 3 days it lingered, and you know that you can only take 2 Tryptans in 24 hours. They do not work anyway for me with a lingering migraine. I suffered a terrible hypothermia event for the first time in 5 months. I get so cold, that I shiver and my skin is cold to the touch regardless of ambient temperature. My body temp drops from it’s normal 97.6 to 93-95 with a drop in BP as well to 95/73. I curl up in bed with a heating pad and after 6-8 hours I may warm up, but no sleeping for me. By the way, I have asked at least 6 Doctors about this and they shrug their shoulders. I guess I would have to be there during the episode to make them a believer, or get the many tests I fear it would take to understand this.

    So, I am wondering Why? Has my Cefaly stopped working? I keep using it, with the exception of during a migraine. I know that I could not tolerate the pain. Sometimes the electrifying is tolerable and sometimes before a headache it is not. I still do the treatment, but not during a headache. My pain is too severe.

    I have noticed that the warmth generated by a new electrode is missing from one that has been reused many times and has more adhesive reapplied. I contacted Cefaly, but there customer service rep does not sound like she knows.

    I mentioned that I have curly hair, that I like to wear straight, and after the treatment you can see my hair curling up, all over my head. So much that it looks like someone just messed up my hairstyle. Also it leaves points of discomfort (pain) on my scalp/head.

    I would ignore all of this if I could lessen my migraines like it did 3 months ago. Botox would be out because of all my allergies to medications.

    I looked into the other device that is for migraine with aura. It will be $750.00 or $150. per month and I am not sure that I can afford that kind of gamble. The company says, you can return it for a refund in 3 months. But it takes at least 3 months to see if anything works.

    I know how desperate these blogs sound from any Migraineur, that is because the effect of living with chronic headaches is life changing. If you do not live it, you do not get it.

  • Marcia
    4 years ago

    Lisa,

    I would hope this has already been covered considering how many professionals you have seen, but have you had an MRI to rule out any other problems? I have been having daily “atypical migraines” (as one doctor called them); so no aura or the typical classic symptoms. This has been going on for at least 2 years. I had a minor stroke in 2012, but when I ask if that could be the cause of my strange head pains, no one seems to know. MRIs have been clear except for the small area where the stroke occurred. After trying multiple preventive meds, my current neurologist recommends Botox injections-about 31 injections throughout my head, neck, and forehead. Something you may want to consider if you haven’t already. Hope this was somewhat helpful. I will check back in after my injections, if not sooner, to see if anything has changed for you.

  • Leynal
    4 years ago

    I’m so sorry!!! What meds are you currently on now? I’m in a similar situation, basically I get up to a level 7 or 8 daily… I know the pain, literally. The very few days I’m down to a 4 or so feels like a blessing.

  • Katie M. Golden moderator
    4 years ago

    Lisa,
    I can relate to you. I wrote about my frustration with feeling like I’ve tried everything here:
    http://migraine.com/blog/ive-tried-everything-2/

    You’ve been through quite a lot to find ways to manage your pain. Random things that come to mind that can be overlooked is have you had your hormone levels checked and your thyroid? What about allergy testing including MRT testing for specific food allergies? Any potential environmental causes like mold?Has your vision been checked? I’m just trying to spitball ideas for you.

    We also have a page that includes an extensive list of preventatives and natural remedies.
    http://migraine.com/migraine-treatment/
    http://migraine.com/migraine-treatment/natural-remedies/

    Maybe something will spark an idea for you. I hope this helps and just know you are not alone!
    -Katie
    Migraine.com
    Moderator

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