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Do I see a little hope? Oh no, never mind

  • By Dana

    I was diagnosed with migraines at 16, I am now 37. I managed most of my life with abortive meds, but as I got older there was nothing to “abort” the pain was constant. I worked a very physically demanding job, but because I worked three 12 hour shifts it was easy to get people to switch shifts when I was feeling awful. About two and a half years ago I stopped working and applied for disability. I finally see a judge May 8th. I’m home bound, I don’t drive because the dizziness and falling is so bad and I can’t shower unless someone else is home. I have Vestibular Migraines, with the migraines themselves being the ice pic through my left eye variety. I really would sometime rather blow my brains out than deal with this. I have done a five day inpatient stay for DHE infusions, Botox, Spine injections, PT, Accupuncture, massage and Chiropractic adjustments (did get some relief from the adjustments, but my insurance will no longer pay for it). I also have abortive DHE and Sumatriptan injections collecting cobwebs at home. You name the preventative and I’ve tried it (but give it a whirl, maybe my docs have missed something). I was put on Propranolol (not smart when you are already dizzy and fall all the time and are hypotensive). I am also bipolar, suffering more with depression than mania, the Propranolol made me suicidal (that is a very powerful drug so PLEASE be careful with it). I have had no success. My neurologist is the top doc in my state and finally shrugged my off and told me she really didn’t know what else to do, so she gave me paperwork for medicinal marijuana ( haven’t been approved by the state, and really hesitant, but some say it’s a miracle and I need one). Went to see an ENT who specializes in migraines and balance disorders, perfect! He gave me an Sphenopalatine nerve block right in the office (I think I’ve seen people call them SPG’s), within 90 seconds I had no pain what so ever! His hope was to treat the migraines first, then deal with the vestibular nerve. He then set me up with 3 more with his NP. I went 2 days pain free. Like I said, I starting having migraines at 16 and I am 37, I have never been pain free for 2 days! Fast forward, saw the NP and his technique was totally different, which I mentioned, and he told me that technique didn’t matter the result was the same…WRONG! I decided to go back to him for my next appt (2days later) and address my concerns, I even brought the paperwork from the initial visit with the Doctor and he got super defensive. I assured I wasn’t trying to insult him, I just wanted to come up with a way to ease my pain and he told me, if I didn’t like the way he did it, go back to the Doctor. BTW, he did the block, no relief and I cancelled my third appt. I called the office and they told me my doctor is booked until May (it’s literally a 10 minute procedure at best, no prep, no sedation). They said they would work on trying to squeeze me in. At this point I just want to see if the Doctor knows what he’s doing and the other guy didn’t or if the initial relief I got was a fluke. I am so desperate for relief. I’m back to being in agony, I don’t know what Doctor I should ask for help from, as in pain meds, or if I should even bother. And like many others the ER is off the table. Any advice, suggestions, others who just want to get their frustrations off their chests? HELP

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  • By Nancy Harris Bonk Moderator

    Hi danadibs1979,

    Thank you for reaching out an being part off our community. I am however, sorry to hear you are having such a difficult time. Migraine can be debilitating, exhausting and frustrating.

    I’m sorry the second SPG block didn’t help and it seems you should be able to see the same doctor who started you off with them. Are you on their cancellation list? Most offices have one and call patients when a cancellation comes in.

    It probably feels like you’ve tried everything out there for migraine, but that may not be the case. There are over 100 medications that can be used to treat migraine and headache disorders and that number goes up with all the various combinations that can be used. You can read more about migraine prevention here; https://migraine.com/migraine-treatment/prevention-medications/. Something to keep in mind when we start new medications is it can take up to 90 days before we see a reduction in our migraine frequency and severity. As our body adjusts to the new medication, potential side effects may be reduced as well.

    Like you, I’ve been dealing with daily head/neck pain and migraine for over 20 years. In January I completed my third round of Botox and it seems to be helping. It can take two to three rounds of Botox maybe more before we notice a reduction in our migraine frequency and severity. I’ve also been using Cefaly, a device to help prevent migraine you can read about here; https://migraine.com/?s=Cefaly&submit=Go. Meditation and yoga are helpful too.

    We can unwittingly create another problem called medication overuse headache, or moh if we take migraine medications (triptans) and/or pain medications, whether they are over-the-counter or prescription, more than two to three days a week. If we are in an moh cycle our migraine attacks will be more difficult to treat and we can end up in an endless cycle of pain that too is hard to break. Moh can also occur from caffeine, a stimulant, which I learned first hand. If I have more than 1 cup of coffee for a few days, I’ll throw myself into moh. Let me share information on this I hope you find helpful;

    It sounds like it’s time to see a doctor who is a migraine/headache expert. These doctors may not be neurologists and what makes them different is that they are board certified in headache medicine, which is different from being certified in neurology. Neurologists have a hard time being experts in one area because they treat so many conditions such as epilepsy, stroke, multiple sclerosis, Parkinson’s and others. Migraine/headache experts concentrate on treating patients with migraine and headache disorders all day, every day. When you get a chance take a look at this 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/.

    I’m going to stop now before I totally overwhelm you. Let me know what you think,
    Nancy

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  • By Dana

    Nancy Harris Bonk Does the Cefaly workout I’ve heard mixed things. Is it FDA approved in the US? Can you tell me more about it?

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  • By Nancy Harris Bonk Moderator

    Sure danadibs1979,

    I find that it is helping reduce some of my daily non-migraine head pain. Yes, it is FDA approved in the US and I’ve also heard mixed results. I think of it in terms of medications, some medications work for some people while others not so much.

    Kerrie and Janet have written about this device you can find here; https://migraine.com/?s=Cefaly&submit=Go.

    Let me know if you find that helpful,
    Nancy

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