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Brain on fire

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Posts posted by Brain on fire

  1. @Jost #1 get oxygen, it will change your life :D. Sumatriptan injections work as an abortive but they are a double-egded sword. Many have increased frequency, severity, increased duration, some episodics report increased and/or longer cycles & some place the blame for changing from episodic to chronic squarely on Sumatriptan. You'll NEED oxygen to abort any slapbacks you may get while busting & to get you through the detox process. Busting is a personal choice. No pressure to use that method.

    Get the oxygen regardless of your decision, it is the best abortive available & has basically no side effects!

  2. Low (threhold dose) psilocybin. I'll start speading out my doses soon. I couldn't take hypertensives, prednisone, D3 etc & went in knowing my choices were limited. I did a lot of reading, asked a lot of questions & received an enormous amount of support.

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  3. Hello again @MRUPE I'd noticed in your 1st post here you weren't opposed to anecdotal evidence because you took the meds you'd been prescribed in the past. Often people aren't aware meds they are prescribed are used based on anecdotal evidence. I am a minimalist med wise & fully understand not wanting to add buckets of supplements to your daily routine. I like to know what is working for my CH rather than wondering what part of several things I might otherwise throw at it are working. I use 1 preventative (not avaiable by Rx but my doc is aware), once a month & don't need abortives anymore.

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  4. @Jost sharing is contributing! You may want to try LSA. Most here use RC seeds. You may want to start a new topic in a closed forum for any questions rregarding them. I am formerly chornic & pain free because of the anecdotal methods here. You probably already know this is a great community. Hang in there, we'll be here.

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  5. Ooooo I ate a lot of Pom when I was training, friend had a tree. Just for the taste, slurp one up for me Kat! Hope it helps you & does the tummy good. Oh how I disliked the taste of the energy shots, but after a few minutes of slobbering, tears etc all mixed up in the pain & o2 blender... I didn't notice any taste. Hope you get pain free soon @kat_92

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  6. Hey Kat, our much beloved Tingling used tuarine supplements, others have as well. Your best bet is to search for it with the magnifying glass. If you add search by author Tingling her posts had a good bit of info on it.

  7. Eastern Equine Encephalitis is caused by a mosquito (not a tick) & vector born diseases do not (in & of themselves) cause ch. If that were the case hmm... Areas where there are no vector born diseases but there is ch? Every person on the forum with ch has (diagnosed or not regardless of their non-exposure) vector born disease?

    Please keep in mind new folks may have been given very little info about TACs (cluster headaches) from thier MDs & may look for accurate info here. Naturally people would like to find something specific to blame their ch on & kick it around for causing them. The most we know now is the hypothalamus (posterior I believe), the trigeminal nerve & possibly a CGRP cascade. Other's please chime in &  do correct me if I am wrong.

  8. When I was pre-oxygen in high cycle chronic I got hit one evening. I made it to my car to drive myself to the ER, realized I couldn't drive & the ER was futile. I sat in my car screaming & periodically banging my head on the steering wheel until it ended. So happy to be starting a new year with those days and nights behind me! Thank you clusterbusters!

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  9. If Emaglity works as a preventative, an abortive won't be needed. Sumatriptan has caused increased intensity, duration, frequency in many & several reported going from episodic to chronic due to using it. Which is why we recommend oxygen over Sumatriptan everyday.

    • Like 1

  10. @Luis it is my understanding in order to get the correct dosage of 3 100mg injections/month for episodic cluster headaches & have the manufacturer's coupon work for it the Rx from your MD must show the  correct dosage, your medical records must show the correct diagnosis & the coupon must be specific to the diagnosis. If any indicate migraine, be prepared for a fight to get Emgality. If your doc has you down with migraines (the Maxalt you take is for migraines), oxygen isn't used to treat migraines & insurance won't cover it for them.

  11. Medical oxygen suppliers are regulated, if your doc Rxs oxygen (regardless of diagnosis) they cross a line if they deny you. Check online for suppliers in your area. Does your insurance cover oxygen for cluster headaches? If not there are options. That is a pretty low dose of Verapamil. Is it immediate release? Most don't use Sumatriptan tablets because they are far too slow for cluster attacks.