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  1. 3 points
    ....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
  2. 2 points
    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.
  3. 2 points
    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...
  4. 2 points
    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.
  5. 1 point
    Hi guys, looks like my cycle started. I feel horrible. I really don’t wanna go through this again guys. I don’t wanna be in pain. Not suicidal or anything I am just tired of this.
  6. 1 point
    To all, This is a dream come true. https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F16%2F2020&sfpd_d=14 This is the gold standard RCT protocol I've been working with Dr. Mark Burish, MD, PhD., Will Erwin Headache Research Center, UT Houston School of Medicine to develop for almost a year at this point. We cut a lot of corners getting the protocol down to two pills with two look alike placebos and no loading dose, but I'm confident this dose will result in at least 70% of CHers responding with a significant reduction in the frequency of their CH during the course of this protocol. Take care, V/R, Batch
  7. 1 point
    The board will be down for a few hours this coming Monday, November 2nd for a scheduled update. Dallas Denny
  8. 1 point
    Just received a message from the t shirt lady.....total of 49 shirts ordered.....$539 raised to be donated to clusterbusters!! DD
  9. 1 point
    Get all your tools together and keep up the fight! Sending you positive vibes brother!
  10. 1 point
    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.)
  11. 1 point
    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
  12. 1 point
    Hi maskedmarvel, What is exactly your fear ? Do you think it will get gradually worse and you will turn chronic ?
  13. 1 point
    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.
  14. 1 point
    Get plugged into healthcare for oxygen and start the vitamin D protocol ASAP. Give more information on dosing past and present. hope to help
  15. 1 point
    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
  16. 1 point
    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!
  17. 1 point
    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.
  18. 1 point
    The t shirt lady posted this update today.... "Wanted to give everyone a quick update - so far we have sold 36 shirts! That is $396 to cluster headache research!!! Our store will remain open until 10/9/2020 if you would like to purchase and help out this great cause. Remember a minimum of $11 per shirt sold gets donated to cluster headache research through clusterbusters" DD
  19. 1 point
    @CHfather As my old friend Roseanne Roseannadanna used to say, "It's always something"! Lmao! DD
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