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ClusterHeadSurvivor

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Everything posted by ClusterHeadSurvivor

  1. ClusterHeadSurvivor

    2018 Clusterbusters Patient Conference Denver

    well i guess no one has nothing to say or pics or stories to share....oh well. take care everyone.
  2. ClusterHeadSurvivor

    Questions

    Do not drink alcohol. #1 trigger Pain Free Wishes
  3. ClusterHeadSurvivor

    Migraines

    Has she tried marijuana? Marijuana is prescribed to me for chronic migraines.
  4. ClusterHeadSurvivor

    2018 Clusterbusters Patient Conference Denver

    Yes, many of us are NOT on fakebook or other forms of social media. Kinda left in the dark ! I would love to hear all about it, stories, laughs, smiles, etc ! Please share for us who coulnd't attend ! thank you
  5. ClusterHeadSurvivor

    Thanks

    Pain Free Wishes !
  6. ClusterHeadSurvivor

    2018 Clusterbusters Patient Conference Denver

    another year missed but a little of me will be with all of you. Pain Free Wishes everyone
  7. ClusterHeadSurvivor

    Question

    D3 for many takes a few weeks to a month to kick in. But everyone is different. I used Aleve for mild attacks. 2 Aleve (gel) and a coke helped the attack in 30 min. You may consider getting welders oxygen or scuba o2 if in a bind. Many swear there is no difference. As for me I cant drink energy drinks. Coke, mountain dew is best I can handle. Pain Free Wishes
  8. ClusterHeadSurvivor

    CH, Marijuana and Me

    I just did a video(not edited yet) on using triptans with pot to relief all the side effects of the triptans but it was made with a migraine not a cluster. Pot makes it 100x worse for clusters but does the trick for migraines. I know everyone is different. But if you are wiped out, it helps you sleep.
  9. ClusterHeadSurvivor

    Botox

    I had it done for my migraines. No help. How it works is 1st dose ,30% of people feel some relief. 2nd dose, 50% get relief but if you have had no relief thus far, dont bother trying a 3rd time. Expensive guess, buuuut nothing is cheap being sick.
  10. ClusterHeadSurvivor

    DBS patient?

    How many of you had DBS? Please answer only if you had....thank you
  11. ClusterHeadSurvivor

    DBS patient?

    fascinating ! I had ONS first and then DBS. Its off though. Psilo saved me. Any PTSD/TBI/Side effects? New headaches of sort? I am asking because there is a 4th headpain no one knows why or what. I ahve a mild TBI and PTSD. Amongst other weird bizzare unwelcomed things happen to me. How have you coped? Managed? and deal with it? I have more problems and pain from DBS then clusters. Im curious if you have trouble too.
  12. ClusterHeadSurvivor

    Cluster and migraines question

    I have 4 headache types. 3 diagnosed, 4th going on year 4 with no diagnosis or treatment that isn't killing me. Tensions, migraines,clusters and ?
  13. ClusterHeadSurvivor

    Trying to stay positive

    I started a vlog over a year ago about living in chronic pain positive. Its called "People In Pain". Its not so much about me per say but all of us a whole. Living positive despite the cards we are dealt. I also do a playlist on helping the homeless and some car guy stuff cause I am a gear head.I find it helps me process my life and helping others gives me purpose. I also advicate for cluster heads through awareness. Perhaps you might be interested in subscribing? If not smoking a fat joint watching Jackass usually does the trick for me.... https://www.youtube.com/channel/UCEkQ1ll1GBbxQkVDzoLCCUw?view_as=subscriber
  14. ClusterHeadSurvivor

    Cbd oil

    Its legal here with a prescription
  15. ClusterHeadSurvivor

    Looking for Help with Cyclic Migraines

    I was gonna add what was already said above D3, but oxygen has been effective for some and also marijuana helps me. It wont break my headache but its less injections and less pills and far safer and as effective when in pain. Pain Free WIshes
  16. ClusterHeadSurvivor

    CBD OIL

    i smoke high CBD daytime..with 1% THC and 11% CBD. night time I smoke high THC,low CBD (only because you cant get both right now). Tried oils,gel capsules, edibles....nothing agrees with my stomach because of severe IBS-d. So I just smoke...bong and vape.
  17. i have had many....suicide attempt, infection at brain surgery, carbon monoxide, electricuted, and a fall....
  18. ClusterHeadSurvivor

    Medications and Vitamins to avoid after BUSTING!?

    cialis/viagra is a huge no no...The boner pill. Sorry to be descriptive...but I read it can bring on attacks like alcohol.
  19. ClusterHeadSurvivor

    Recovery time

    Moxie. I am so very sorry Your post just punched me hard in the feelings. Pain free wishes. and blessings to your friend
  20. ClusterHeadSurvivor

    Clusterbuster newbie

    Welcome, pain free wishes Mel. I would also encourage you to buy this book. It is the cluster bible ! click here www.ashleyhattle.com Ashley is an author and cluster head as well as her fiance and she is one of us. This book is a wealth of knowledge and a must have for survivors and caregivers. I would encourage your mom to read it aswell. I do a vlog on YouTube about living in chronic pain positively.My channel is ClusterHeadSurvivor. Listen to all the people here. They are a wealth of info. Pain Free Wishes Mel.
  21. ClusterHeadSurvivor

    New Cluster Headache Research Study - Science 37

    I believe Canada is welcome to the study as well. I was talking with him and he encouraged my Canuck brothers and sisters to sign up
  22. ClusterHeadSurvivor

    New Headache need advice

    Hi, chronic CH under control by MM, Chronic Migraines about 15-20 a month which I control by meds, and pot. Couple tension headaches a month. No biggy. A neck pain in my head that is undiagnosed and chronic with zero remission for 3 years now. I'm waiting to see a physiatrist because my neurologist thinks it's not a headache. 2 days ago I woke up feeling flu-like symptoms. So I took Buckleys. As the day progressed I felt worse and worse. Worn out. Lethargic, Tired.Moody. By 5 pm I could barely eat thinking oh no its the flu. (my head and body temp always goes up during headaches so I wasn't 100% convinced it was the flu that is going around). By 530pm in bed with a pounding headache in my forehead to the crown of my head but mainly in the forehead, Not once in my life have I experienced this type of headache pain. Not a cluster because hey well all know that's the eye. Not hot poker or stabbing. Not a migraine because of no aura, no sensitivity to light or sound. But pressure in my head incomprehensible to me. I actually thought I was having an aneurysm. I thought that this was it and really....I am ready to go without any bad feelings. I been ready to go for a very long time. I am NOT and I repeat NOT suicidal. I have just had enough of this pain in my life. And I am ready to go home. Do not worry, I am not making a plan, I am not thinking about it or trying or wanting to. I just prayed to God that if it was my time, I couldn't resist and look forward to coming home and being with mom. I couldn't even get out of bed to pee. It wIm not complaining or seeking pity but just stating what happened. I did try on Dec 31, 2008, to die, and unlike then when I wanted to, I don't now....I just won't fight it if it happens....make any sense? Just don't worry ok...I'm mentally good. Anyway, so as I lay there since I am NOT having any CH or Migraine symptoms...I think to myself....take a reg Tylenol and see what happens. So I take 1-500mg fast release Tylenol....wait 30 min and voila.I get relief...but ONLY 5 min tops....WTF? Wife comes home at 11 and gives me my reg meds and 1 more Tylenol 500mg. Again, 30 min later I get only 5 Min of relief. I laid there without 1 wink till 7 am. By 7 am the head pain lifted? Now since then (2 days later). My head still feels really sensitive, slight pain 24/7. (touching my hair hurts), I still feel nausea and bit woosy. Best way to describe is what I felt after brain surgery. Like a Mac Truck ran me over. No fever, no vomit, or direah so it wasn't the flu. I'm scared to death this going to happen again....I mean I have lived with CH for 12.5 years. Migraines /tensions since age 8(45 now) the new headache/neck pain for 3 years....Now what? This is the only headache other than a CH that made me think....being alive suck...that dying is what was happening to me and going to a better place is better than this shit. I have never wanted to pass on because of a migraine. Only a CH but this headache wasn't as painful as a CH but it kicked the living crap out of me and its 2 days later and I am still wiped. Seeing my neurologist will take a year so that's out. If it happens again and my wife is home I hope she can get me to emerg. Your thoughts?
  23. ClusterHeadSurvivor

    Special message from us to you

    https://www.youtube.com/watch?v=PMDAvN5okpQ&t=87s
  24. ClusterHeadSurvivor

    Fukitol

    Click Here
  25. ClusterHeadSurvivor

    Fundraiser for CB

    ok...not enough traction here....check out my friend drumming for 30,000+.... used to keep puke bucket for his headaches besides the drum kit.... He is the one who signed the decals... come on people....donate to CB and get an autographed decal by Jeremy Taggart ! https://www.youtube.com/watch?v=OJfKba5GzVI
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