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Everything posted by Freud

  1. Freud

    Cluster rules

    One of my rules are no two people have the exact same pain, pain is relative and you can’t judge some one else’s pain compared to yours. All you can do is empathize and offer help when possible. Great thread MG!
  2. Freud

    Is ch linked to dental work?

    CHF is on the money. I haven’t had a cavity filled since having clusters but I always ask for without epi bc it triggers migraines for me.
  3. Freud

    Is ch linked to dental work?

    The only “link” between dental work and CH is that people undergo unnecessary dental and sinus procedures thinking it’s the cause of their pain. These tend to be people with undiagnosed CH. don’t be scared there is no link between the 2. Getting and abscess and subsequent endocarditis from not treating it is your biggest risk.
  4. Freud

    Connected maladies and connected “cures”?

    My mild depression has gone away since busting with mm.
  5. Freud

    Oxygen concentrators?

    I have not tried it yet. I have tried the hyperventilating trick though with mixed success. I’m going to do higher flows and see what happens. Thankfully I never run out of O2. I have 3 m tanks and when I get down to two I call for refills. They come same day or next day. I am super lucky in that respect.
  6. Freud

    Oxygen concentrators?

    Thank you to everyone who replied to my question. I had to go with the affordable option this time around. Going to see if 25LPM helps better for the stubborn headaches that 15 doesn’t work for. I’ve been putting my extra cash towards mm growing. Now I’m isolating genetics and using agar dishes. Good genetics makes a huge difference.
  7. Freud

    Portland Oregon sufferers?

    Sorry Monica, I’m on the east coast but I love PDX. My name is Brian I’ve only had clusters for a year and a half which is nothing in comparison. I have chronic CH and don’t get brakes. Hopefully you’re episodic and this cycle will come to an end. What do you do as far as treatment goes, I imagine you’ve tried everything under the sun. I have had mixed success using mushrooms and LSD. I only have mixed results bc I was on a blocking med I couldn’t get off of. I’m currently detoxing that med and plan to bust. I use oxygen to get by and zembrace when it’s a full blown 10/10 kip scale. There are plenty of people here that have been suffering for 10-20 yrs like yourself. Hopefully some of them will chime in. Have you tried the D3 regiment. A member Batch is the go to guy on it. Many have had great results even remission. Hope my sharing helps. Brian
  8. Freud

    Oxygen concentrators?

    Thanks funtimes I was having trouble finding the 25LPM myself.
  9. Freud

    Oxygen concentrators?

    Could some one provide the amazon link for 25LPM regulator. For an M tank.
  10. Freud

    Oxygen concentrators?

    As a rule of thumb if the O2 works to clear it, stay on for at least 5-10 min after they are gone.
  11. I was dosing really high because I was on a psych med that blocked most of the trip. I also don’t mind tripping. But a dose of 1.5 g should be enough for most people.
  12. Freud

    Suna syndrome or cluster headaches?

    So I also don’t believe your blown pupil is random. Horner’s Syndrome is seen in both migraine and cluster HAs. It usually goes away
  13. Freud

    Fog = Shadows?

    Given the timing, in medicine we say when you hear hoofs think horses not zebras. Chances are it’s the ugly CH beast coming back. Do you have access to psychadellics. This may be your alarm bells going off indicating your cycle is about to start and is a perfect time to bust. It would be interesting to see if they went away with some mm...
  14. Freud

    Suna syndrome or cluster headaches?

    Hi Katrina, sorry for the very brief post earlier, just figured I’d get the ball rolling. I really don’t think it’s CH based on the number of attacks. But a diagnosis is never made with such little information. Could you tell us how long the attacks last. What they feel like (SUNCT/SUNA is usually described as single stabbing, multiple stabbing, or saw tooth) , What happens when you try Triptans eg. sumatriptan, or oxygen the standard CH aborts. Have you tried lamotrigine or gabapentin, standard SUNCT AND SUNA TX. Your best bet for now is trying the D regiment that Batch has proposed, read the wiki, ask questions, request the lab test, and take a copy to your MD. Batch is a wealth of knowledge and can tweak the regiment to get better results. His scientific knowledge is incredible. As long as you can afford it you’ve got nothing to loose and everything to gain. To me as others have stated it sounds like one of the SUNCT syndromes but my knowledge of each is limited to an online CME I watched last year and can’t find. Sorry for the bold type it was unintended.
  15. Freud

    Suna syndrome or cluster headaches?

    50-100+ attacks does not sound like clusters to me.
  16. Freud

    Sumatriptan Help

    I’m surprised the pills do anything. I took some my mother had a few times before I was able to get in to a neuro when my CH first started. The injections work much better. I think you’re in the UK based on drug names. Here in the states there is a half strength sumatriptan injection called zembrace. It is much more effective. Stops the cluster in 10-20min. Others in the UK have split the 6mg auto injectors open and get 4 doses out of a single shit. There are YouTube videos on it. To to answer your main question. Triptans can cause s cluster cycle to get worse and can prolong a cycle. I used to go through them like water but no longer do. I use oxygen as my main abortive. It’s the standard of care and your best option to abort. I am chronic so I never get a break and didn’t care I just wanted relief before I got my oxygen.
  17. Freud

    Ginger for preventing or aborting?

    Very cool I’ll have to look into this thanks for posting the info!
  18. Freud

    Vitamine D3

    Batch you’ve got a solution for everything w the D regime. I think it’s time I start
  19. Freud

    Traveling with CH

    Anything to tame the beast!
  20. Freud

    Traveling with CH

    What’s the flow rate on the concentrator?
  21. Freud

    gammaCore device query

    Have you tried busting with seeds?
  22. Freud

    gammaCore device query

    From what I gather both from reading and my experience as a chronic. CCH is a bit more stubborn/ persistent than ECH. Just the luck of the draw I guess.
  23. Freud

    gammaCore device query

    They must be thinking gamma knife or something. Sorry you’re having trouble. My doc was one of the investigators and I got a free month. It didn’t help my chronic CH.
  24. Freud

    gammaCore device query

    It costs $500 a month unless you can sign up for a free trial. My insurance won’t cover it.
  25. FYI if you get in with Grosberg the closest hotel is right there but $300 a night I stay 10 min away for a third of the price.