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  1. Today
  2. Dallas Denny

    Website update!

    The board will be down for a few hours this coming Monday, November 2nd for a scheduled update. Dallas Denny
  3. maskedmarvel

    Mindset Advice

    Aaaanyways I'll probably be turning of notifications for this thread now. Wishing everyone the best
  4. Siegfried

    Mindset Advice

    Yes that is correct and chronic does not always mean you have constant attacks 24/7. Many CH'ers are labeled chronic with 1-2 attacks per month. Chronic just means there is no remission.
  5. Siegfried

    Mindset Advice

    I got my first migraine attack when I was around 10 years old. That is now 42 years ago. Being one day (always in the weekend) per two weeks in my bed with serious headache, and strong nausea had been a part of my life as far as I can remember. I never made a problem of it. That was just how it was and I did not know anything else. 8 years ago, when I started to experience TAC symptoms, that was much more difficult to deal with. I was not used to that kind of extreme pain. First they diagnosed it as CH which I believed for a long time it was. But it did not fit the CH pattern so that was very difficult to deal with not knowing exactly what I had. Indomethacin confirmed what I suspected already for a long time and now it is diagnosed as chronic paroxysmal hemicrania. My migraine became chronic as well, completely against the expectation it should disappear at later age. My wife is very afraid the indomethacin will destroy me... so I try to stay away from it as much as possible. At least, when I take indomethacin, the PH disappears as snow in the sunshine but unfortunately very often it is getting substituted by nasty migraine attacks. So I can choose between the pest and the cholera I still can work 4 days a week but I have my limitations. These CH/migraine or PH/migraine combos are very difficult to manage and every morning when I wake up and feel the pain, my first thought is..."how will my day be ? Will I be able to suppress it ? ... hope I do not have to take sickleave again." But when I have a good day, I enjoy more of it because I know it is short lived.
  6. maskedmarvel

    Mindset Advice

    So based on what I am reading on pubmed etc, going from episodic to chronic is pretty rare. Idk, it also kind of seems like anyone who is prone to headaches around this time (including a friend of mine who gets migraines) is having a particularly difficult month.
  7. CHfather

    Mindset Advice

    ClusterBusters is a tax-deductible nonprofit organization. You can donate here: https://clusterbusters.org/donate/ (For future reference, there's a "Donate" button on the homepage, which you can get to by clicking on the word ClusterBusters at the top left of any page.)
  8. Yesterday
  9. jon019

    Mindset Advice

    Wow...yes! ...for many years now... from many sources I've seen that meditation (and other "mind tools") is useless for ch. sometimes the dismissal is aggressive. I find this to be short of sight and narrow of mind. meditated every day for every year I've had ch... didn't reduce or alleviate one single hit... but instrumental in maintaining my sanity and will to carry on between the hits...
  10. devonrex

    Mindset Advice

    Always been chronic, the frequency has simply changed for me, the fear seems part and parcel with ch, fear of the pain, fear of the next, fear it will be worse, fear when you get a longer break than normal because you think it will come back worse, fear a treatment will not work, fear it will then stop working. On and on they go, many of these are the same mind treadmills that you get with ptsd, I mean subjected to unimaginable pain for upwards of hours, to get a respite, knowing it is coming agai, sometimes with no rhyme or reason, sometimes fearing the simplest things could trigger. For me, trying to focus on the now, helps in between attacks, guided meditation helps calm me, even the mindset that this could be as good as it gets helps in some ways then you turn to coping with what it is right now and not what it might be later.
  11. jon019

    Mindset Advice

    ....been both episodic and chronic.....the fear of changing from one to the other was constant and oppressive...then it happened and i learned it's really the same beast in different form... and strategies must and can be adjusted. there is ongoing discussion on which is "better"...i could make arguments on either side...but it really doesn't matter cuz ya don't get to choose. personally, upon reflection, i think the basis of the fear was "change". had a similar gut wrenching fear of hits changing side...why would that be "worse"?..dunno and never found out. ...the beast is hard enough to deal with...making yourself nuts with worry about how he changes the "rules' is kinda pointless....attitude, a plan, and the right tools are the key.. best jonathan
  12. maskedmarvel

    Mindset Advice

    Yeah sometimes.. That and I also keep hoping that based on my past patterns I can reasonably expect this to be over soon since we are coming up on 30 days.. I had one that wasn't too bad on Friday but it lingered around for about 4 hours which is not usual for me.. Find myself wondering what that might mean and I am also unsure about how taking MM again now might affect the rest of this cycle.. I spoke to Dr Gawel today and he recommended I not take them again and let it run its course unless it gets really bad again Kat, I am in total awe of the strength that chronic CHers must have.. For what its worth there are no more courageous people anywhere on earth. Also wondering if there is a CH charity or some way I can give back to this community.
  13. kat_92

    Mindset Advice

    Not to take over the thread but I think everyone has their own fears regarding CH. mine is that it will get so bad I’ll be out of work and have to go on disability, or having children and being pregnant having to stop MM. anyone else have similar fears? Kat
  14. Siegfried

    Mindset Advice

    Hi maskedmarvel, What is exactly your fear ? Do you think it will get gradually worse and you will turn chronic ?
  15. Last week
  16. Dallas Denny

    Cluster Headache Awareness T Shirts

    Recieved mine yesterday and am very impressed as well! She's supposed to give me the final tally on the money that was raised for clusterbusters tomorrow. Dd
  17. CHfather

    Cluster Headache Awareness T Shirts

    Received mine a couple of days ago. I see the store is closed now, but I wanted to say that it's a very nice shirt -- good material, nice printing, fits right. "Well done!" and thank you!! to the t-shirt lady.
  18. maskedmarvel

    Mindset Advice

    Thanks Kat I did in my other post... My cycles seem to come just short of every 2 years.. Times when I didn't know what it was and it was left unchecked IIRC lasted about a month. Last time, when I found this site, it lasted less than 20 days and I used MM 3x.. I have been on the vitamin D protocol for about 2 weeks now (was helpful last time too). This cycle started some time near the end of September. I have taken MM 4x about 5 days apart. Last time I ate MM I had almost 6 days of no attacks but got some border line shadows.. Since then I have gone about 24hrs between attacks and had a pretty mild one early this morning after almost 36hrs.. I am hopeful that it will be over soon since they seem to be getting weaker and further apart. The nature of the cycle, how to know if its almost over is hard to understand. I spoke with a doctor on the list here, Marek Gawel last week and it wasn't super helpful. The conversation was about 10min long, I forgot to ask about oxygen and he didn't even mention it... Just what pharmaceuticals there are which I probably can't afford anyways. I am trying a different neurologist as soon as I can next week. Based on my previous pattern I am hopeful that this cycle is over soon. When i asked dr Gawel he just said its over when I don't get shadows anymore which is like saying its over when its over.
  19. Freud

    Mindset Advice

    Get plugged into healthcare for oxygen and start the vitamin D protocol ASAP. Give more information on dosing past and present. hope to help
  20. kat_92

    Mindset Advice

    I wouldn’t be discouraged just yet! If the Mm don’t stop the headaches completely they might make them at least be tolerable. Try and see if you can find some more. We have all been here, that feeling of discouragement. I am chronic and I have had many depressing days just accepting this into my life. Just try to do what makes you happy any time you are pain free. This is a life long condition. There is no cure. Accept it and enjoy ANY pain free time you get. Kat
  21. spiny

    When do you consider your cycle over?

    Hi Mashburn and welcome. Sorry that you are suffering PTSD. Well, that is what it sounds like and we get it for obvious reasons. I hope that it becomes much less over time! You have been diagnosed, right? What are you taking for your head? Any O2 for your hits?????? Have you had a MRI with your diagnosis? I always feel that two weeks PF means it is over. I might still get a random hit due to weather, but the cycle has ended. After two weeks with no hits, I will sometimes try a beer - big trigger - and if that goes down with no CH, I call the cycle over. If I feel nervous regarding getting a hit, I have a cup of coffee. Good ole caffeine! ATB!
  22. mashburn41

    When do you consider your cycle over?

    hey ladies and gents, I am new on here. I have been having cluster headaches for about 10 years. usually they last 6 weeks or so and then go away. this cycle has actually been less aggressive but I had one really bad one that just scared the shit out of me. I end up laying on the bathroom floor throwing up. it has now been about 15 days without a bad headache but I still have such bad anxiety and depression when I get any little pain or feeling on the right side of my head. anyone have any advice? sincerely, Jay
  23. Pebblesthecorgi

    Permanent Eye Swelling/ Problems

    Get it evaluated. Probably not related. If it’s in the upper or lower lid it is likely a chalazion which is benign and treatable.
  24. devonrex

    Permanent Eye Swelling/ Problems

    My neuro had said, at least for chronic, slight permanent droop, constricted pupil, reduced sensation, puffiness below the affected eye are all common, just never heard of a lump personally.
  25. Pebblesthecorgi

    Anti-inflammatory effects of psychedelics ?

    I think the point of the article is in their model anti-inflammatory properties were noted in a non psychoactive component of certain psychedelic drugs. The mechanism for the that property is still being investigated. Personally I suspicion there is an "entourage effect" to all the interventions many find helpful. Somehow the presence of certain substances has an stronger effect than a single substance alone. If you think about it, n=most of the treatments we find helpful are generally found to help reduce inflammation: D3, antihistamines & Steroids come to mind. Whatever triggers the inflammation starts the cascade which results in misery.Of course this becomes complicated because of all the other factors to consider. In the end we do what we think works explaination be damned. Rest assured it won't be something simplistic or easily treated by existing knowledge. Much work to be done.
  26. Eleusinia

    Anti-inflammatory effects of psychedelics ?

    @tony, I see articles like this posted pretty often. But most people who use psychedelics only do it once or twice a year. I guess my question is: does infrequent use like this have an effect on inflammation?
  27. kat_92

    Long cycle, bad day

    @SoCalCH hey! Sorry you are having such a rough time. We can all sympathize. What was your busting regimen? Did you follow the 5 day rule and completely free of meds? Maybe that’s why you haven’t had much success with it. It took me 6 attempts to get some pain free days! Kat
  28. dmlonghorn

    Ping pong

    Hey Tony - I always get mine on the right side, however, just the other day I felt it trying to punch through the left. The sensation was foreign but familiar at the same time. Fortunately, it didn't fully manifest and it went back to doing what it does to my right side. It was like the beast was exploring its options. I chalked it up to the MM doing its thing. Hang in there man. PFW.
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