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Who Else Has Intractable Migraine? How Do You Deal With It?

A MyMigraineTeam Member asked a question 💭
Pittsburgh, PA

I have chronic migraine but I was recently diagnosed with intractable. Interested in learning more.

January 28, 2023
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A MyMigraineTeam Member

I agree with AnnR. I suggest trying the hot/cold therapy, meditation (preferably in a dark room if possible), and CBD (full spectrum) without any medication for a few days (again, if possible) and see if that helps it to stop. I'm so sorry you are going through this. CBD oil has helped a lot with my chronic migraines, but I haven't had intractable migraine yet. I've had almost up to 72 hours of a migraine attack, but not over that. I've tried different CBD oils and not all were effective. Hemp Worx full spectrum worked the best for me, but it's different for everyone. It makes me really sleepy though, so I only take it at night before bedtime.

January 30, 2023
A MyMigraineTeam Member

It's also know as Rebound Headache. If you take too much medication for a Migraine and it goes away, within a few hours it comes right back and could last days. I was on Percocet for Migraines years ago and had rebound headaches that lasted 5 days. Nothing I did helped other than go cold turkey and take nothing till it went away. Once in a while I will get one but not as bad as before. I try to watch what I take and how much so as to avoid it.

January 28, 2023
A MyMigraineTeam Member

Not all intractable migraines can be labeled as rebound headaches. For years I had continuous migraines for anywhere from 14 days up to 28 days straight. I was on absolutely no pain meds during most of those months because I had no health insurance. This was before I had ever tried any anti-CGRPs. After many years of working with my neurologist, we finally found a combination of Aimovig, Botox, CBD oil and T-relief, and getting binasal occlusion glasses helped reduce my migraine days down to between 7-14 days per month. However, I still can have a migraine that lasts for 3-7 days. After of being accused of overuse of medication causing these supposed rebound headaches, I now have learned to fight my migraines without pain medication, relying on meditation, ice/heat and CBD to a large degree. I limit my intake of oxycodone to no more than 2 pills per month, taken only in half pill dosing, and only for the migraines starting to exceed level 8. (Level 9 is for inability to speak and level 10 is for being unconscious or fainting from pain.)

January 28, 2023 (edited)
A MyMigraineTeam Member

There are good and not so good neurologists. Try finding another (if that’s possible). It helps if they are certified for working with migraines. There will be someone out their that can provide better, empathetic care.
I’m not a doctor, so my advice is just an opinion. Your “concoction” could drive
Rebound headaches, or be problematic in mixing some very powerful medicines. Hope you find a good doctor.

January 28, 2023
A MyMigraineTeam Member

I have been diagnosed w status migrainosus. Doctors have been useless, mostly shuffling me off to other doctors. One pain management specialist told me to go back and tell the neurologist he doesn't see deal w "that kind" of pain. I live from hour to hour managing on my own concoction of Tramadol, Benadryl, Fioricet, Valium, and Prednisone. NO standard treatment works. No doctor "manages" my treatment, I'm on my own since having a patient they can't "treat" is anathema to most doctors.

January 28, 2023

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