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35 day migraine any ideas

  • By theoutcastwriter89

    I have had a migraine on my left side for 5 weeks. As of last week I have lost some of my vision and hearing on that side. I have been to the e.r. twice had a number of shots of toradol had magnesium and been given thorazin but it hasn’t helped. Been to both my pc and neurologist with no results. Just wondering if you guys have any suggestions on things I can try to stop this. Really at my wits end here.
    Thank you

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  • By Nancy Harris Bonk Moderator

    Hi theoutcastwriter89,

    Thank you for your question and being here with us! I’m sorry to hear you’ve been experiencing extended migraine pain. I understand how frustrating that is.

    First may I ask if you’ve been taking anything on a daily basis, or near daily to help relieve this pain? Something we can unwittingly get ourselves into is called rebound, or medication overuse headache, moh. If we are in an rebound cycle we can end up in daily pain and our migraine attacks may be more difficult to treat. Let me share some information in this with you; https://migraine.com/living-migraine/stop-rebound-headaches/.

    We don’t like to see migraine pain last longer than 72 hours as it may increase our risk of status migrainous and stroke. You can read more about that here; https://migraine.com/blog/what-is-emergency/.

    How about talking to your doctor(s) about getting an infusion in hopes of breaking this cycle? When I have extended pain, my doctor will give me an infusion of sodium magnesium, decadron, torodol and something for nausea.This article has more infusion options you can discuss with him; https://migraine.com/blog/alternatives-to-the-er/.

    Please keep us posted on how you are feeling,
    Nancy

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  • By theoutcastwriter89

    No Nancy I have not been taking daily pain meds I have had rebound headaches before and they suck. I have had two infusions so far and it helped a little but as soon as I woke up the next morning it was back just as bad. My doctor is as stumped as I. We have been doing botox for about a year and it was working great I was down to about 1 a week but now I am just can’t break this one.

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  • By Nancy Harris Bonk Moderator

    Thank you for your quick response. Sorry to hear you’ve already experienced rebound – that stinks! Many people aren’t aware over-the-counter pain relievers as well as migraine medications can create rebound too.

    May I ask what was infused? The list in the article is pretty extensive, maybe something there would help?

    Fingers crossed for relief!
    Nancy

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  • By Nancy Harris Bonk Moderator

    It may be time to seek out the help from true migraine/headache disorder expert rather than a neurologist. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many other conditions such as multiple sclerosis, epilepsy, stroke, Parkinson’s and others. A true migraine/headache expert is board certified in headache medicine, which is different than being certified in neurology. Here is information on how these doctors are different and how to find one;
    http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    What do you think?
    Nancy

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  • By theoutcastwriter89

    Thank you Nancy for the articles I plan to talk to my neurologist today about the headache specialist. We have discussed it before but until this migraine it had not been a true meat because the medicines I was on for helping to an extent I thank you for your words of advice
    JoLynn Whittington

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  • By GardensatNight

    Hi JoLynn,

    You might consider going to an infusion center and trying to get an infusion multiple days in a row (if this is something your neuro thinks is a good idea and does with other patients. That has helped me break up extended migraines. I usually skip the toradol because I try to avoid anything that can cause rebound and my body likes to do that with painkillers like toradol and anti-inflammatories like benadryl. So unless I REALLY need them, I avoid. I typically get magnesium and depacon in an infusion, multiple days in a row, and if they’re really having trouble DHE and an anti-nausea med. Not everyone tolerates DHE well. I try to avoid the ER unless just desperately vomiting. They prescribe me something different every time. At the infusion center, it’s what my neuro has prescribed and if I want to leave something out, I can.

    Anyway, one more idea to discuss with your doctor. This is basically the only way we stop my migraines when theywon’t stop now since by body just laughs at triptans now.

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  • By Maressa

    I am surprised the hospital has not admitted you yet! After three ER visits (Toradol/Benadryl/Tylenol/Zofran/Morphine, then Stadol/Reglan, then magnesium/Reglan/Caffeine/high pressure air) they admitted me. Once in the hospital, they tried depakote/Reglan and finally DHE.

    Is there another hospital that you can try? They really should be able to try more medications via IV!

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  • By GardensatNight

    Have your doctors talked about investigating whether you could have a CSF leak in addition to migraine? Not sure what your reading was. Mine was 7. They did several blind blood patches that brought the pressure up some, but I was still symptomatic even when mine was a 12. It turned out I had a CSF leak and I am doing better after it was blood patched right on the spot where they found the leak. You can have both migraine and SIH (a CSF leak) and migraine brains are extra sensitive. I had been spiraling downwards for three years, lost the ability to be around light (no man-made light), then sunlight, then became so sound sensitve we have to eat off paper plates, then lost the ability to read without pain. It was like my brain was slowly killing itself. My migraines increased in intensity and frequency. I had a two-month migraine nothing would stop. Even lying in bed at home, I still had migraines every few days that lasted 5-7 days. Now, after the blood patch right over the leak, I’m SO MUCH BETTER. I am so thankful for the neuroradiologist who saw what a disaster I was, and insisted my CSF reading was not normal (I talked to three doctors and all three had different ideas of what “low” was, none of which included my number, but sure enough, the MRI confirmed the leak), that my symptoms were not normal and got with my doctor to order the right procedures and tests.

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