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My new Internist: “There’s no such thing as Chronic Migraine.”

(Chronic Migraine since July 1984)

Having lost my wonderful Internist to burn-out (she no longer practices), I was forced into a search for an Internist who accepted Medicare and Blue Cross/Blue Shield PPO. 99.9% impossible these days, when the desired is Medicare Advantage, only.

However, after 2 visits with the nearly one and only Internist who accepted my two plans, I will have the privilege of firing him, once I’ve seen my new Family Practice Internist, who I hope will work out.

The first replacement internist who indicated there was no such thing as chronic migraine also did not believe my litany of drugs tried for the last 33+ years of migraine. My initial migraine was an exception, as they had to rule out stroke in the ER while I was unconscious; and, I was hospitalized for one week. Aside from hemi horrible pain, I was left with “water on the brain” (due to the dilatory phase of the migraine which was huge) as the neurologist put it, so my memory was greatly affected for some months. However, I was assured that I had had the mother of all migraines, per the scan, and I do believe that half of the neuro Residents in all of San Francisco were paraded by my bed in the week I was hospitalized. I’ve never had so many of the same neuro evals in such a short period of time! LOL! The pain from that initial migraine has never left. It remains at Level 1-3 every day and spikes to 6-7.

Yes, Botox was great for 2 years, until my body apparently developed a resistance to it. Then there was the NSAID Mobic, which I took for 12 years and was 80% successful, but has unfortunately had an adverse effect on my kidneys, so am now in chronic kidney disease 3B.

Having moved to a new city after retirement has been a great challenge post-retirement, as I’ve lost all of my great docs. It’s taken me this long (3.5 years) to get a line on a really buff pain doc, who I will see in 3 weeks. Hoping for great results here, as for my chronic migraine and severe low back pain I’ve been taking ONLY 1 oxycodone per day with breakfast, which lasts 6+ hours and have now been given the 3rd degree and here and now am known as a “drug addict ‘ NOT and a “drug seeker” NOT. I am so angry with our lawmakers who have literally lifted me up and tossed me into a dumpster with all of the hardcore drugsters in Oregon and across these United States I could puke.

March was an epiphany month for me – huge light turned on, for once since 1984, and all due to a confluence of events. It was during this month that I came to realize that MSG, glutimates, modified food starch and modified corn starch can spike migraine pain in less than 4 minutes. Since then, I’ve been able to decrease the number of migraine spike days by 80%. As today was our first day at 84 degrees and I spent one hour in the sun with my granddaughter without a broad-rimmed hat, I’m now suffering that stupidity with a migraine. Heat – blooming heat. Would like to know how many of you react to heat that way. My husband honestly doesn’t believe me.

Being my first time on board here, thank you profuseoly for allowing me to rant. Living in a new state with tens of thousands of drug addicts, no wriggle room for people like me, an incredibly obnoxious and ill-educated physician from New York who thinks he knows it all and ought to go back to New york, and a knee replacement gone bad, when the surgeon injured 2 nerves and the ITB, thereby leaving me with a numb left foot and paralyzed toes, has me seeing too much red since the big move.

My wish for us all is more and better research, which results in effective drugs that run the gamut. (I say this because I’m limited in what I can take, due to seizure disorder as well.(

Again, thanks all for being here for me today.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ed M.
    2 years ago

    I have had a half dozen neurologists treat me (and primarily my chronic migraine disease) since a traumatic brain injury 34 years ago. I awoke from a coma with neurological and mental health symptoms. By far, without question, I now have the best doctor I have ever had and it is because she is a neurologist with a psychology degree. If you can find a health care provider that has expertise in mental health as well as the mechanics of migraine, grab them and told let go. Their perspective and “dot connecting” talents are invaluable. Good luck.

  • sfnative author
    2 years ago

    How fortunate that you were able to make a connection with such a physician. Now I am thoroughly jealous. Since moving away from an intellectually rich medical community in California to a “C” grade city in Oregon, I’ve been challenged to find practitioners who are, dare I say, in my league, as I also have a healthcare background. I am very grateful for the combination you mentioned and will be on the lookout for such a practitionerr. Thanks so much!

  • Luna
    2 years ago

    I can not go out in the sun without a hat and sunglasses. Can’t even go out in the bright without a hat and if too bright add the sunglasses. Don’t do well in heat or too cold either especially the damp cold here in western Oregon. I’m recognized in town by my hat and sunglasses year round. These two items are just a part of me. Courage and don’t forget the necessities.

  • sfnative author
    2 years ago

    I hear what you’re saying! I’m now in Portland and wear sunglasses on the dreariest of days, My husband things I’m nuts, but simply doesn’t understand glare, which stabs through my left eye like a knife. Now that sunny days are here, more than wet, I’ve now got my hat out, after that heat induced migraine. Wishing you a good summer.

  • Joanna Bodner moderator
    2 years ago

    Hi there sfnative, Thank you so much for being here and taking the time to share your 30 year journey with migraine. You have certainly been through a lot living with this condition. Moving especially sounds like it has taken quite a toll on your pain management.

    I am however thrilled to hear that you have been experiencing a decrease having made dietary changes! That is wonderful! You are absolutely NOT alone when it comes to dealing with heat! Here is an article for some tips when in the sun – https://migraine.com/blog/in-the-summer-sun/.

    If you don’t mind me asking, are you also seeing your pain doctor for you migraine? I thought I’d share this article -https://migraine.com/blog/why-we-ask-about-your-doctor/

    Thanks again for your willingness to share your story & encouraging words of hope to our community for more research. Take good care, Joanna (Migraine.com Team)

  • sfnative author
    2 years ago

    Thank you for providing links and information. Greatly appreciated.

    Regarding the pain specialist being seen in a few weeks: He actually came recommended to me by the parents of a 16 year old female who has been having a simply dreadful time after the onset of migraines several years ago. Many, many missed days of school, intractable pain, difficulties of dealing with pain in minor patients (very difficult), psych issues in teen patients, hair falling out due to stress of constant pain and loss of school hours, etc. Her parents found this pain doc and told me, “He is bringing our daughter out of a very dark place and is treating her with drugs and protocols no one else would.” That was enough for me to ask for his name. Though I’m also presenting to him with moderate to severe low back pain (complicated pathologies), I’m looking forward to my time with him and hope for the best.

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