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ClusterBusters

Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire

    Hi friends! Guess who's back? Yep, me and clusters.

    Hope it is just the weather rather than a full on cycle and the meds work regardless.
  2. Brain on fire

    Are there any D3 Testing kits?

    Hey @Dana129 Were you able to get your supplements and lab tests? Awful news about the fires in Australia. Hope you are in a safe area.
  3. Brain on fire

    Hi friends! Guess who's back? Yep, me and clusters.

    Oh nooooo!!! Hope you have a plan in place.
  4. Brain on fire

    For the milder of the headaches...

    Not by any means am I saying you are stupid, we all make mistakes. There is a pinned post in Research & Scientific News about it. I'd suggest reading the entire post as well as the links in it for a better picture. Pain free wishes!
  5. Brain on fire

    Diet and Clusters

    I had to reframe the way I looked at my chronic cluster headaces to exit despair mode. Even though the next Kip 10 came only 30 minutes after the 1st, 2nd etc. ended (I was Kip 10 to Kip 0 no ramp up, no ramp down). They each had an end & 30 minutes pain free between them. I was grateful for both.
  6. Brain on fire

    spread sheet

    Yipee! I got something right today! Seriously I've dropped, knocked over and/or spilled everything I've touched. I decided maybe the keyboard won't break.
  7. Brain on fire

    spread sheet

    Variables could be a major jam. eg. Does Topamax work for you? I couldn't take topamax to begin with. Yes doesn't apply, no doesn't apply, sometimes doesn't apply. Doesn't the Registrate Your Journey App (here) do something similar? Or did it at one time? I've never used it.
  8. Brain on fire

    Stomach pain while on d3 regimen

    Hi @Luis I read back a few posts for perspective. I saw your post on pins & needles. I may have missed something. Did you have your labs done before starting the regimen? If so were they 'normal'? Are you still having the pins and needles feelings? Is the MD who started you on Emgality aware of you starting the D3 regimen/loading etc? Since you also recently started Emgality (if it were me) I'd report to that MD & be sure to inform re the D3 plus labs.
  9. Brain on fire

    Taurine

    Oxygen is an abortive, not a preventative. I understand using it while on the job could be problematic with your profession. If you are comfortable speaking to your employer about it, maybe that can be worked out. Just sending some random ideas because I don't like to see anyone in pain when they have the tools to stop it.
  10. Brain on fire

    Taurine

    Drinking lots of water is always good for you, more so with ch. Care to share why you are avoiding using your oxygen?
  11. Brain on fire

    For the milder of the headaches...

    Working with a ton of medicines and no oxygen makes little sense. Edited to add & clarify: Not remembering to take your preventative isn't helping you. If you repeatedly abort with triptans you run the risk of increasing the cycle, the frequency, the severity of the ch & may be one of the ones who switches to chronic as a result. Using THE 1ST LINE ABORTIVE *OXYGEN* eliminates that risk & has no side effects. Risks vs benefits, ultimately the choice is yours. Not aborting attacks won't necessarily change your cycle. That said, sometimes cycles just change on their own.
  12. Brain on fire

    New to the group

    Ha ha ha ha ha! @Batch would they do that? Then again.... 1 pill once daily (or once every month or so) would be simple. The fact it would be profitable would drive research into ch... I love it when anyone does research into ch.
  13. Brain on fire

    Taurine

    Sounds like it may have less caffeine too. Hope it works well for you @kat_92 Sure would like to see you achieve pain free status !
  14. Brain on fire

    Taurine

    @kat_92 how did it go with the V-8?
  15. Brain on fire

    New to the group

    @Batch Exciting news. Who is doing the study?
  16. Brain on fire

    Taurine

    Pineapple! I adore pineapple & just finished treating my hair with coconut oil. I should get some for the yum factor!
  17. Brain on fire

    New to the group

    @Jost #1 get oxygen, it will change your life . 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!
  18. Brain on fire

    New to the group

    I didn't see your response as critical at all. Shame about your docs. I am very fortunate to have an open minded, compassionate & well versed doc.
  19. Brain on fire

    New to the group

    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.
  20. Brain on fire

    New to the group

    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.
  21. Brain on fire

    New to the group

    @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.
  22. Brain on fire

    Taurine

    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
  23. Brain on fire

    Taurine

    Is it just me or does that V 8 sound really yummy?
  24. Brain on fire

    New to the group

    You can find info on the D3 regimen in the link to the post here I'm inserting. You'll need to scroll down to it. Link to Basic non-busting information
  25. Brain on fire

    New to the group

    Welcome aboard & thanks for sharing!
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