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Posts posted by ClusterHeadSurvivor

  1. 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

  2. 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.

  3. 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.

  4. 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.

  5. 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....



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  6. 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.


  7. 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.

  8. 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?

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