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Showing content with the highest reputation on 09/11/2019 in all areas

  1. 2 points
    @Dana129 I wish you didn't worry so much. My chronic cluster headaches began without warning. Three every night, all kip 10s. When I saw the videos, I was in auch a state of denial 'not me'. Well it was me that accidentally shoved my head through the wall, bruised my body terribly but didn't notice till the next day etc. I had the 'fear' of attacks only briefly because they were coming & I had nothing to stop them back then, fear soon became pointless. Look at me now, pain free sleeping through most nights. I still have Complex Chronic PTSD (unrelated to cluster headaches) and the treatment is helping that too. See? Hope is all over this forum! Edited to add: If they ever return, I know how to stop them.
  2. 2 points
    Rod H

    New, English and Confused .

    Sorry about your situation. When your cycle ends keep getting your monthly refills. Stock pile so you are ready for the next episode. Keep reading and ask away. This place has helped me more then my good Dr.s have.
  3. 1 point
    I’m very active on the clusterheads subreddit, that place is what lead me to clusterbusters, something I saw really got on my nerves, someone posted a video of a video of a cluster headache attack...and it pretty much triggered the worst anxiety I have felt in a while, the fear of knowing that more then likely I’m going to go through that again at some point, when I was new to cluster headaches, I made a very common mistake and watched videos on YouTube of people having cluster headaches, I wish I never did that, it only made the process of finding out I had clusters more traumatic, the fear and anxiety I felt when watching those videos, particularly that one with that woman who was screaming and having her partner slap her forehead was too much to bare and it made the experience much worse. Although I haven’t yet experienced the heights to level of CH pain, I still live in fear that I’ll one day reach that point...I was quite angry that the person had posted the video, for me, a video of a cluster headache is like a gorey video to people who hate blood and gore, I hate watching them, it’s scary, that’s why I stopped researching on YouTube altogether. I personally don’t think people with clusters, particularly people who are new should watch videos of attacks, there is little to be gained that can’t be gained anywhere else in terms of knowledge, the people that should watch those vids are people who don’t have clusters, to raise awareness and she’d light on what we go through, so I felt like my safe haven had been somewhat breached when someone had posted a video of an attack, nothing wrong with sharing such videos, in fact I admire it, it’s very brave to share that with people online, but subreddits and forums for people trying to seek help and people who are more then likely at the heights of their depression and anxiety due to agonising pain should not be exposed to videos like that, it just isn’t the appropriate forum to post attack videos...anyway that’s my vent, I’m mindful that this may not be a popular opinion, I just felt the need to get that out of my system
  4. 1 point
    CHfather

    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.
  5. 1 point
    Brain on fire

    Energy drinks

    @FunTimes well said. Wecome Terri (and partner). I am a former sufferer of chronic cluster headaches, 3 every single night. I am a former sufferer because I found this site and using the methods here am now living pain free. Read, ask, encourage your partner to join us.
  6. 1 point
    Hopefully by catching it early, starting to be religious about taking the d3 regimen, other preventatives and oxygen you never reach that point
  7. 1 point
    Pebblesthecorgi

    Surgery while taking Verapamil

    It’s ok to be on for surgery. You do need to let the anesthesiologist know to avoid adverse interactions, most common being heart rhythm disturbances. They can manage you well. Let them know about the clusters, they may give you some ketamine. Request to wake up with high flow O running. Best to you.
  8. 1 point
    jon019

    New, English and Confused .

    Welcome TEG, glad ya found us, …..yeah...OXYGEN, D3 and perhaps busting.....your goal is to have the suma on hand for the RARE, if any, breakthroughs..... because right now it sounds like way too much of a med that can feel miraculous but has some nasty side effects and can potentiate rebound hits... ...had the same problem thru 7 different insurance companies (O2 too)...one being BCBS...the 12/mo they are allowing is pretty standard...best I ever did was 18/mo....there are several strategies that worked for me...in the end, ALWAYS got both....(if Medicare, forget the O2 being covered, do self pay or welding O2)... ...starts with an advocate Dr (s)...mine were with a headache clinic used to dealing with insurance droids...your doc has gotta be on board. You need a letter of "medical necessity" stating what your diagnosis is (codes important) because you and your doc BOTH know you have CH.. and insurance companies "act" or ARE ignorant of CH and will give you the typical baloney of denial since "we don't cover these amounts for migraine patients. No shit! ....but YOU.DON'T.HAVE.MIGRAINE! Next, his/her PRESCRIBED treatment. Hopefully your doc is as pissed as he/she should be that some paper pusher is questioning their professional medical opinion/competence...and making medical decisions w/o having examined you (aka practicing medicine w/o a license). ...my opinion, constantly reinforced over the years....health ins companies routinely deny claims out of hand...they COUNT on a certain percentage just to give up...DON'T! Treat this like a game you are gonna win. No one likes hassles with insurance.... but it's nowhere near as soul crushing as riding out hits "naked". ...keep a record of every communication with names, dates, and times...be prepared to quote their own words back at them...especially the stupid and wrong... ...it would be especially helpful (if you get your ins through an employer)....to get HR on your side...better yet, request HR to put you in touch with the broker who sold the company the health insurance policy. This person is incredibly important since THEY are the customer of the ins company and more likely to get some action... you are just an annoyance... ….one strategy my doc employed was to prescribe 2 DIFFERENT triptans at the same time...since one ins Co wouldn't give me enough Imitrex, she wrote another for Zomig NS (5 mg)...might even have been BCBS...they didn't even blink, approved immediately...tho the 2 scripts were same cost as ONE script of the Imi I needed. Side benefit of that: discovered Zomig worked at least as well, with fewer side effects and longer effective action. IMPORTANT NOTE: never mix triptans...always give at least 24 hrs between different types.... ….Imitrex is sometimes available in vial form (ask your pharmacist or check online)...where you draw up the med and inject yourself (I used diabetic needles)...allowed me to get 15 aborts (2 mg ea) out of one script and avoid the hammer of 4-6 mg in the statdoses (which can be dissembled so you can use less...like FunTimes said)... Best Jonathan
  9. 1 point
    FunTimes

    Surgery while taking Verapamil

    I take 120 once a day and just had a hip replacement. They did not ask me to stop taking it. I took it 2 hours prior to the operation. Good luck to you. I broke my collarbone in high school and all they did for me was reset it and put me in a brace.
  10. 1 point
    CHfather

    Melatonin and clusters

    Agree with F'T'--it probably isn't worth it. But a few thoughts. You don't say how much you were taking. In the studies of melatonin for CH, dosages of 5mg were sometimes effective for treatment, and the treatment effects typically only showed up after 3-5 days. So you might consider trying a lower dose, and maybe taking it an hour or two before bedtime. Melatonin levels are typically low in people with CH, particularly nighttime levels during a cycle--but it also appears that they might be generally low in people with CH, even out of cycle--and melatonin is an important thing for regulating the hypothalamus. Since you mention looking into indomethacin in case you have another kind of TAC (very good idea, in my opinion), I'll just also mention that because melatonin has a very similar structure to indomethacin and fewer side effects (for most people), it has been tried as an alternative treatment for hemicrania continua. There was some success there, in doses as low as 3 mg, but overall many people with HC didn't respond to it. Just sayin' you might want to give a lower dose a try (depending on where you started), but I can see why you wouldn't want to. (In addition to all this, there's the question of the type of melatonin you're using. In straight pill form, it has very low bioavailability, so even higher doses have less impact than when it's taken under the tongue, or in chewable form, or as a spray.)
  11. 1 point
    FunTimes

    New, English and Confused .

    you can split your injections to extend them, you can find information here and on youtube on how to do that. You will also want to look into getting oxygen at a flow rate of 25lpm and a non rebreather mast, you can also find info on how to get that setup on this site as well. A member on this site has developed the D3 regimen that has helped countless cluster heads. Poke around this site, start bu clicking the blue link at the top of the page for new members. read as much as you can and ask questions and you will get answers. Busting is a big topic that has helped most bring clusters under control. Welcome to the site you will be happy you found it.
  12. 1 point
    FunTimes

    Energy drinks

    Being negative is all part of the game, it happens to me all the time. I am chronic so I do not have cycles but deal with this every day every year. I try to take a look at myself from the outside and find it kind of funny that I was chosen to deal with this and was chosen because I can deal with this. I am a big fan of the 5hr energy drinks or anything similar off brand type drinks like this with the caffeine and taurine. Walmart and dollar general both sell drinks like this. For some push ups, jumping jacks or some other vigorous activity can also help lessen the pain at the start of the attack. Oxygen is the biggest help, the faster you can get to it and the faster you can fill your lungs the better. Do you have the cluster mask and a high flow regulator for your tanks? Cluster headaches suck but you are in the best place to fight them. read this site as much as you can and ask questions. Look into the vitamin D3 like mentioned by the pros above and read up on busting it could change your and your partners life.
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