All Activity
This stream auto-updates
- Past hour
-
-
-
-
To all attending the 2019 Conference in Dallas
Ken’sHead replied to Brain on fire's topic in Advocacy, Events and Conferences
Wow.. DallasDenny, that was fast. Thanks for the help. Makes life easier just having “the plan”.... - Today
-
Hi Barnabus, From my experience, just telling like it is, is the best way forward. I am very open with my condition towards my coworkers, manager, family, friends etc... Things I mostly tell are like It's a very rare condition, a neurological disorder that only a few people have. I was unlucky to drew the bad fate and now have to deal with it and it will not go away anytime soon I tell how an attack feels, how 'clusters' work and that there are fixed periods that I am good and others that I am much worse. Sometimes I let them see a youtube video on how an attack looks like I also talk about the medications we are using: oxygen, verapamil, medrol, triptans etc... all heavy stuff; so next time they won't recommend you an aspirin I usually say also that I am still lucky I can have a more or less normal life with this. Many CH sufferers are completely disabled. It's a heavy condition to deal with. No need to downplay but just stay objective and don't fall into self-pity or compare yourself openly with others with other conditions. Just tell the facts, not your interpretation of the facts. This way I have actually never encountered anybody who told me to take an aspirin, or lay a bit on my bed or something because they have some background of what it is. They know it's not a usual headache. If they do not have this information, you can not expect people to be aware and react in a right way. There are so many diseases out there and unfortunately cluster headache contains the word 'headache' so that's what they think it is... Paroxismale hemicrania patients are better off... although the condition is nearly identical, the name sounds very scary and people won't think of a headache Best Regards ! siegfried
-
To all attending the 2019 Conference in Dallas
Dallas Denny replied to Brain on fire's topic in Advocacy, Events and Conferences
G'mornin Ken Just spoke to our conference chairwoman to verify that you can check out an O2 cylinder to take to your room at the Hilton...needs to be returned by Sunday afternoon. DD -
-
-
-
-
To all attending the 2019 Conference in Dallas
Ken’sHead replied to Brain on fire's topic in Advocacy, Events and Conferences
Thanks for all the information. I am excited about the conference but I’m going to be at the Hilton (looks about 5 minutes away). I’m wondering if the conference will still let me check out oxygen tanks or if I’d be better trying to make arrangements for Apria to deliver to my hotel? Can’t wait to meet everyone... I haven’t said that in years!! -
Banditftw88 joined the community
-
AEL365 joined the community
-
paveguy64 joined the community
-
@jon019 agreed! Start with your family and communicate... And then communicate some more. In my home, our own form of sign language is evolving. It helps when I'm about to get hit, getting hit, etc. Things like thumbs up, down, hat on backward, sunglasses on inside. I downplayed the hell outta CH at work, things only got worse at work. Try to get a mini plan at home that works and implement variants of the plan throughout other portions of your day to day life. Shame on CH, not you. Ya hippie!
-
Hey 81007 So I used the sumatriptan pills one cycle kinda like youre describing but like you said they only cover so many on insurance. The pills are cheap though I used to get a box of the 100mg for under 20$ out of pocket after my insurance wouldn't cover them. As long as you have a script call around for out of pocket prices.. I used to use the 50mg and get 4 to 6 hr breaks from headaches and the 100mg would last about 8 to 10 so I would take them at night to sleep. The only reason I stopped that way because when they wore off I would get my attacks and it seemed pointless after a while. 02 and energy drinks work for me now. Rather quickly too.
- Yesterday
-
Many people with our Trigeminal Autonomic Cephalgia a.k.a. cluster headaches do feel shame. Some hide it from the people closest to them. Granted we didn't chose to get them, though some of us choose to hide them. I think this is because they aren't just headaches, we want people to view us as who we are & not by what we have. An attack is ugly to the person having it. It makes sense for it to be frightening to someone who knows nothing about it. Guilt/shame isn't always a choice. If you have depression it usually comes packed full of it.
-
Bustycox13 joined the community
-
Fantastic news! So happy you are getting your life back (& going to the conference)!
-
...nope...CH is not a choice....guilt/shame is...I got pissed and made a plan and followed through.....sometimes it even worked...and when it didn't...NEW plan....
-
The "redneck" method that I mentioned and linked to above involves filling a kitchen garbage bag with O2 and using that along with room-air hyperventilation. If your oxygen supplier is going to honor a sensibly-written prescription, which should have specified that it's for CH and that the flow rate should be at least 12 lpm and you should get a nonrebreather mask, then they ought to supply you with a larger tank. TBH, I seriously doubt that that is all they have (not doubting that they told you that), but if it is, they are required to either replace your tanks as often as necessary or get you a larger tank. If your doctor is sympathetic, get him/her involved. O2 suppliers are regulated by most states, and I believe they are breaching their responsibility to you. You might not want to go there (larger tank(s)/reliable refills) because the cost might be too high.
-
Living with CH - 8.5x11 - 9-8-14.pdf
-
Last year I sliced my hand open. Got six stitches. A couple times I almost burnt the house down, left food in the oven. With the CH's I tend to want to stay still as possible. I just got over of a CH the other day and was doing the laundry. When I opened the clothes dryer door, the heat made my head hurt again. I closed the door and went to lie down. I sometimes get a headache from going outside in the heat, I quickly rush back in the house. Southern Colorado is having a heatwave and is a desert , so it is very dry. So basically I find that being still keeps the pain to a minimum, while raging, shouting and moving about is counter productive. I fear collateral damage from the CH. I keep trying to explain to the local VA clinic that driving 300 miles round trip to get Sumatriptan from Denver is dangerous, but they really don't care. Military facilities in Colorado Springs refused me more Sumtriptan last week too. All my concerns seem to fall on deaf ears. And they all wonder why veterans commit suicide...
-
Hey guys ’n gals. Soo, as topic, does anyone else feel shame? With that I meen shame for being an unpredictable party-pooper, ( I often get attacks that ruin planed fun days). More a ”being a burden” feeling. Shame to talk about the fact that I suffer from severe/extreme headaces with friends and co-workers. (Take an aspirine and man up, you just have a headace) Sometimes when my wife sees that Im in pain, I tend to down-play it, saying that its Ok, just a little normal headace, when infact I am hurting bad, then I suffer through best as I can to not disappoint/burden her. (It always backfires as I cant keep up the pokerface as the energy drains quickly trying to keep up the charade. Same deal at work, I tend to downplay the severity of the pain, as im affraid to hear something like: there is ”something wrong with him”. ( I eventually crash ) And now, after finally finding this website, and the information that lead me to find reliefe with the use of MM, I feel ashamed for using ”illegal substances”, Hippie/FP hallucinogenics. /Barnabus
-
Hot damn Brian!! That is some OUTSTANDING FECKING NEWS dude!! When do you arrive in Big D? I'm leaving okieland early Weds morning for my 88 mile journey to Grapevine....all but the first 5 miles of gravel county road is major freeway and tollway driving and I don't even have to go thru the Metromess to get there!! Wooo Hoooo! Almost (but not quite) makes me feel guilty for saying that...lol.....I have two longtime clusterhead friends coming.....Lady A left Scotland for Germany this morning to hook up with Hans and fly on to Dallas.....she's already in the air and they won't get to Big D til early tomorrow!! Yeah, maybe I do feel a little guity!! Stopping along the way to pick up a case of Colorado Koolaid longnecks to go with that pizza!! Safe travels my friend and see ya soon!! DD
-
G'mornin Clovis! The regulator you have is insufficient for most clusterheads!! When I tried O2 for the 1st time it was with an 8 lpm reg and it wasn't effective! Most of us need a minimum of 15 lpm and many folks use 25 lpm regs. DD
-
I dont understand what that means, bag? As for tanks thats all they carry, i did ask. I will look at the welding link, thank you for posting. Thanks for input, take care.
-
Since I asked you all those questions and you answered them, I feel compelled to respond. First, to say I'm really sorry for all you have been through and are going through. Beyond that, I have very little to offer. I'd say that trying indomethacin seems to make sense. As you probably know, it does effectively treat hemicrania headaches that are CH "lookalikes" (but hemicranias are typically (though not always) unresponsive to oxygen). I assume you mentioned that you have to lay still during an attack because you know that is contrary to a CH diagnosis. I'm not saying it rules out that diagnosis, although you would be the first person with CH that I've seen in ten years at this board who can (or must) do that. 15lpm is fine as long as the bag on your mask is full whenever you're ready to inhale using the most effective method. If the bag isn't full at that point, a higher lpm will lead to better aborts. When you say "D3 does nothing," I'm just making sure that you mean you have tried the full D3 regimen that I linked you to. You could have your D level checked with a standard blood panel at your next appointment. I hope you get more help, or at least sensible prescriptions, from your appointment this month.
-
I'm surprised you can abort at all with a flow if 8 or less. You can buy a higher-lpm regulator, but of course you'll go through the tanks faster. O2 supplier should supply reg and mask. I assume you'll call them today and see what's involved in getting bigger tanks, but with self paying, I think it is probably going to be less costly for you to go the welding route. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ You could try Batch's redneck method, which I linked you to above, which will use a lot less O2. I feel compelled to mention again that there are people who assert that having a bag of combustible O2 around is not a safe practice.
-
Touche, as i have burned thru 2 tanks in 3 days, I had no idea it would be used up that fast..I had a regulator (plead the 5th) and mask. But my regulator only goes up to 8, idk the volume its producing, 3 seems like a good number..
-
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.
-
docjavadude joined the community
-
I have an attack, I take 100mg sumatriptan. Pain goes away for 6-12 hours. I wash the pill down with can of redbull and hyperventilate O2@15 lpm for 15 minutes. Usually stops the attack. 95% of the time... Verapamil had my blood pressure so low, I could not get out of a chair. No indomethacin yet. D3 does nothing. Got the mask. My guess is I have a case of acute chronic cluster headache that is extremely refractory. Usually 3 attacks a day. I seem to have lots of triggers. Smells, foods, weather, you name it, I probably have it. Processed foods seem the worst. I don't pace or fidget when I have CH. I lay down in the bed and try to stay calm. Moving about makes it worse. I asked for Emgality and got Ajovy. Doctor did not listen. I am getting a new neurologist this month. Seen about 6 doctors over the last 3 years. Finally got a diagnosis April 2018.
-
I know my neuro told me the permanent droop I have now on my right eye is caused by them as well as topical numbness and a slightly constricted pupil on the same side as my attacks are all normal, especially in chronic but will fade when or if the attacks stop or diminish, so not permanent damage but physical effects that persist beyond the immediate attack.
-
To all attending the 2019 Conference in Dallas
dmlonghorn replied to Brain on fire's topic in Advocacy, Events and Conferences
Can't wait to meet y'all!! -
I don't know what this means. Are you saying that you feel an attack coming, take the pill, and then you don't get an attack for 6 to 12 hours? So maybe you're thinking that the pill acts as some kind of a short-lasting preventive? I'm not asking these things to critique your clarity -- I'm just trying to figure out what's going on. Apparently O2 + Red Bull sometimes works and sometimes doesn't. And it's mysterious to me that your attacks come back two hours after a full 6mg injection of sumatriptan. It is possible to split those injections, and those who do find that 2-3mg is sufficient, but if 6mg is so inadequate, maybe you don't want to. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ A few thoughts: Have you looked into the D3 regimen that has helped hundreds of people? http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Is your O2 system optimized (flow rate of at least 25lpm; high quality mask)? While Ajovy doesn't work for CH, Emgality might. Have you tried getting that prescribed? Were you doing MM without the recommended five prior days off of triptans? (Could be that your dose is so low that it doesn't matter as much, but the full 5-day detox is recommended.) You might give an energy shot like 5-Hour Energy a try instead of the RedBull. The shots actually have considerably more caffeine and taurine (considered to be the effective agents) than the full-size can of RedBull, and they're easier to get down faster. Of course, considering what you have said, my big question is whether you actually have CH, or whether you have been misdiagnosed. Have you taken indomethacin? If so (and if you remember), at what dosage and for how long?
-
To all attending the 2019 Conference in Dallas
chauntemaria replied to Brain on fire's topic in Advocacy, Events and Conferences
Hi, everyone! I'm Chaunté! My husband Zach & I will be heading to Dallas from THE Buckeye State (OH-IO!) for our first Clusterbuster Conference in just a few days! Seemed like fate that we have close family who live in Dallas! Day 219 since the Beast decided to rear its UGLY head. It then provoked me to crawl up to my peacefully sleeping husband, I woke him up in hysterics and said " If I fall asleep now, I'm afraid I'll never wake up again. I think my brain is bleeding." That first day was the 1 month anniversary of our marriage I REALLY should have said " In HEALTH and sickness" instead of the traditional way! (We're HARDLY traditional anyways!) 219 days of cluster headaches later................ we're headed to Dallas!! Everyone told me in the beginning, "Stay strong. This won't last forever." About 2 weeks in, somehow I just knew this was going to be a longer journey than what I was being told. CH has (sadly) altered the person I was. It breaks my heart! However, I'm overwhelmed with emotion when I think about meeting all of you who experience the life-changing pain that I do. And can my poor hubster meet just ONE friend who really understands the 50 Shades of Crazy I go through during an attack? Haha Honestly, I'm more than blessed. He's basically a saint! Gahhhhh!!!!! I'm excited, nervous, overwhelmed, anxious, etc, to meet everyone!!! Is there an itinerary for the conference I can print out? XO, Chaunté
