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ClusterBusters

Boatman

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  1. Thanks
    Boatman reacted to Joshua in Am i the only person that usually gets one headache a day during cycles?   
    I have taken Emgality for 2 months, I just started the 2nd. That's 3 shots the first, and 3 shots the second. My headaches reduced (after a one day spike) from about 5 a day to 2 a day, and now I'm pain free for almost 3 weeks.
    As I said in a previous post, there could be some change of season at play here as well, but the reduction in hits was definitely noticeable 24 hours after the first injections.
     
  2. Like
    Boatman reacted to Freud in Quick update   
    Hi all, I have some great news to report!  I am on my way to being PF and getting my life back thank to so many of you. The vitamin D protocol is doing most of the heavy lifting so to speak. I’m coming off of my best week in over a year but who’s counting. I live in the moment...
    I will give a full update ASAP. I am still figuring out the best way to utilize the ketamine. However it is helping a ton as well. I personally have a super high tolerance to most anesthetics. Therefore. My starting concentration although a moderate dose will probably be bumped up a bit after discussing my usage and results w my doc. I promise I will make a more detailed post ASAP. I think ketamine should be a weapon in the arsenal to treat uncontrolled CH. I don’t find it intoxicating unless I take a big dose 20+ sprays...  10 sprays at (50mg/ml or 5% solution) and I start to get some help. As it is a dissociative (I have not dissociated yet...aka k hole). At 4-8 pumps I feel mild distraction from the CH. usually enough to take an edge off. However if I have down time and a bad CH I will go to 10-20pumps. This is not what I recommend for everyone!  If you do try it. Start low and go slow is my advice. Most people do not enjoy being dissociated from what reading I’ve done on recreational use... but for a kip ten I say bring it on. I have only had one Kip 10 since starting it =-). 
     
    BBL with more info.
    looking forward to seeing y’all in Dallas. 
  3. Like
    Boatman reacted to CHfather in Energy drinks   
    A lot of people with CH are negative in the sense I think you are using it -- resistant to things that we "outsiders" think might help them. I include myself as an outsider because I don't have CH, my daughter does. My daughter was so mad at me as I was going about getting a proper oxygen system set up for her!  She had "tried" oxygen with a very ineffective system, concluded that oxygen didn't work for her, and didn't want anything more to do with it.  The new system works great and probably helped save her life, along with other ideas from here, but it's my belief that many people with CH have been so disappointed by things that they hoped would work but didn't that they would rather avoid having that disappointment again than try something else.  It wouldn't be surprising if your partner has had bad or inadequate advice from doctors (as I mentioned, it doesn't look like he was prescribed any preventive) and probably way too much "I get headaches, too, and here's what I do ..." input from well-intentioned people who have no idea what he's going through.  For that matter, you and I have no real idea what they are going through, only that they are suffering terribly. 
    Recognizing that everyone's experience is different and I might be overgeneralizing, there are related phenomena that are worth considering in case they might apply to your situation. Like many other people with CH, my daughter only very rarely wants to talk about CH. She just wants to try to forget that it's real. When an attack is over, she wants to go back as much as she can to "normal" life and not dwell. There are a lot of people who come to this board when they are in cycle and stay as far away from it as they can when they're not in cycle. Also, there are many reports about people with CH doing all they can to hide what they are going through from others. There was a woman here some years ago whose husband and family had never seen her having a CH attack. Maybe that's extreme, but we have had many supporters here over the years feeling bad because the person with CH wanted them to go away, leave them alone, when they were having an attack.  I'm going to go ahead and say that I think that's in part because no one wants to be seen being that vulnerable, that helplessly in the control of something so awful. I know there are other reasons, too, but I do think that's one of them.  I was reminded a little of that today in a post by @Dana129, who wrote about watching a video of someone having a CH attack, "I felt like my safe haven had been somewhat breached when someone had posted a video of an attack." So I'm just saying that CH is probably unlike almost anything else in the way that it can push away people who want to help. Many people here have worked that out with their supporters in one way or another, but it can be challenging. He is blessed to have you there. 
     
  4. Like
    Boatman reacted to johncluster in Sumatripton help   
    there is no money in O2  for these drug dealers ,  so they  don't wanna offer it, But triptans are more expensive and will cause rebound headaches so you gonna see the doctor more often.
     
    Welding 02  rental gonna cost you $30 a bottle.
  5. Like
    Boatman reacted to VocTeacher in Any input   
    Dallas Denny my Nero doc said the same thing I have CH for a few years when ever I get a cycle I have neck pain it would be my 1st indicator that a cycle was going to start but I didn't have any neck injury, Freud your so right I explain to my wife that it consumes me which in turn causes anxiety and depression I try and live a normal life but always fearful that an attack is going to happen
    Thanks  
  6. Like
    Boatman got a reaction from CHfather in New to this site. Help needed.   
    Mr S. 
    Not sure if you live near a major city or not but most have a headache center at University hospitals, when my wife tried to get me in at one they told her I would have to wait a couple months for an appointment and she told them "you don't understand he doesn't have a couple months he has cluster headaches" once they heard that they imeadiatly told my wife they would get me in and cluster headache patients get VIP appointments. It's worth trying to find one because May is not reasonable for a cluster headache person. Most regular neurologist don't specialize in cluster headaches and can be frustrating to deal with because of thier lack of knowledge on the condition.. I drive an HR to see a good nuero.. 
  7. Thanks
    Boatman got a reaction from EggMan in Supposed “breakthrough” for episodic sufferers, take a look at the article below   
    Eggman I posted some stuff about using welding o2. It could help if you have trouble getting it through you're insurance. If you want you can private message me and I can offer some help. Welding o2 is all I use
  8. Thanks
    Boatman got a reaction from AlexItalian in Beast is back   
    The only thing I can say about the sofa is it will sometimes make me uncomfortable to the point it triggers one. It's so plush that it makes my back/ neck loose circulation. I also find if I lean on my elbows on the armrest it can cause it to aggravate my neck and once my neck gets aggravated I usually get attack. I avoid any thing the puts pressure on my obcebial nerve.
  9. Thanks
    Boatman got a reaction from Milelli in Cluster rules   
    #1 rule ignore people who are presistant to telling me "just have a glass of Wine" or "have a beer youll be fine!" Or my favorite "youre still not drinking?"
    #2 ignore people who say ive had those or my husband used to get those or my dog gets those!
    #3 Bring your 02 with you when ever you can!
    #4 fight beast with Monster
     #5 be kind to others even when your hurting its not thier fault
    #6 seek and destroy all glade plug-ins, candles, enfusers, car air freshners and what ever damn strong oder that triggers me. 
    # 7 The emergency room is worse then my room with a cluster attack. Theyll just leave you there to suffer
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