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Showing content with the highest reputation on 07/16/2019 in all areas

  1. Jeler my name is funtimes and I also am a user of 5hr drinks.. haha I never had anything like a energy drink prior to my clusters. I read about it here and did not have my oxygen set up yet so I figured I would try. I find the 5hr type drinks, you can use redbull or anything with taurine and caffeine, will slow down the ramp up time of the attack so I have better results using the oxygen when i get to it. I down the drink on my way to the O2. The O2 alone will change the game for you. You can abort an attack in under 20 minutes most times. I am chronic and have only been playing this game for about 6 or 7 years but prior to this site it was even more of a living hell. I tend to forget that sometimes. You will find all kinds of help here as you already seen. I also do the D3 with the Melatonin at bed time. I also will add Benadryl 3 times a day when things get real bad.
    2 points
  2. Funtimes,i Hello and thanks for the info on energy drinks, I'll look into it some more. CHFather Again, thanks for the info on O2. I've copied and texted myself the info when I go visit with the supplier. Jeff
    1 point
  3. Suggest you read the whole section on oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ This is an excerpt that might be particularly relevant in the short run: To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment. Many of them are not used to providing for people with CH. You want cylinders (tanks), not a concentrator. At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank). Multiple versions of each tank are better. You need some kind of stand, at least for your larger tank(s). A rolling stand is best. You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask. These are all things they should know to give you to treat CH, but often don’t. When the stuff is delivered, have the delivery person set it up for you and be sure it's working.
    1 point
  4. Freud, Thanks for the valuable information! Neuro returned my call this morning and I relayed all this info to them you wrote here. O2 order is moving forward now. They are also moving forward to getting a request in to radiology for a brain/head Scan! Rod, Never heard of it. Sounds like a great place to eat, even though my diet is a bit restricted now to rule out possible food triggers. I'll let you know if I need help with the O2, thanks so much for the offer. I have not tried energy drinks as of yet, truth is they kind of scare me to even try one. I will look into it however. On another side note I did took Melatonin last night, 10mg, to see if it would help me sleep and rid me of CH's waking me up. Beast visited me at 1AM and again at 6 this morning. Felt a bit droggy this morning, but I can handle that. I'm an early riser normally and wake up between 5 & 6 like clock work. Of course I crawl into bed between 9 and 10 each night too. Did feel some relief with 10mg of Melatonin and will try again this evening. 5 hours of sleep is so much better than the 2 hour average I've gotten the last few days. Have a great day and again "Thank you so much for all the Help" Jeff
    1 point
  5. ClusterSwarm, I'm a CH sufferer for 36 years now, during which I've done some reading. So let me save you a lot of time. (a) CH is not an allergy, histamine is not the cause for CH, and your body also produces histamine without being allergic. Histamine is not only a marker of allergy but also an inflammatory agent, just like CGRP, Substance P and other molecules involved in the mechanism behind CH. (b) If the doctors you went to did not know what to do with CH, they were clearly not headache specialists. Actually, if somebody gives you painkillers for CH, he certainly ISN'T a headache specialist. First line for CH is Highflow O2 and Imitrex as abortives; Verapamil as prophylactic; and a steroid taper as transitional therapy. Pain killers are a waste of time.
    1 point
  6. Benadryl (Diphenhydramine) is far more that just an anti-histamine. It also binds to some serotonin, dopamine and adrenaline receptors, all of which are connected to CH. For some people, an allergic reaction might trigger a attacks, for several reasons. So, antihistamines might be somewhat beneficial, but only as an addition to a more proper treatment.
    1 point
  7. Since you’re asking make sure you insist the script has the following: 1diagnosis w/ code 2 “oxygen @15-25LPM via NON-REBREATHER mask PRN (as needed) CH 3. Please supply Pt w/ M tanks and E tanks i put in the tank sizes bc some places require that others automatically give M tanks to CH patients and you need a second script for the smaller portable E tanks. You will probably have to buy your own regulators to get above 15LPM but a few places have the higher flow regs. Hope this helps, I suggest Apria healthcare. They have been great to me. All CH patients are in an “on call” delivery setup. So you call when you need. I try and give them a day but it has happened that they have come same day. The drivers say the policy is 3M tanks per pt. But I currently have 9. Lol. Every time I called I asked them to put in the notes 4 tanks, then one day they say as usual when hanging up “is there anything else I can do?” I said yes, could I get 5 tanks? They put it in the notes and wala I got 5. I call when I get down to 3-4 tanks and reorder 4-5 tanks. If I have half filled tanks or still have a full tank when they come my delivery guys just leave what ever I have left and bring all the new tanks in too. Last week the yard was low on tanks and he only brought 3. Then randomly the door bell rang last night around 7:30pm. It was one of my oxygen guys. He was on call got called out kinda close to my area so he threw 5 more tanks in the truck and brought them over and surprised me! I’ve had nothing but good things to say about Apria...
    1 point
  8. That's an affirmative on the pizza and beer Freud! Lmao at "perfect record of resisting honky tonks"......I lived in Cowtown from 68 to 84 and played guitar and sang in bands the majority of that time period.....I imagine I've sang a country song in near about every honkytonk in town!! Sounds like we're gonna have a big crowd with lots of 1st timers this year so really looking forward to meeting all of ya'll...I had the pleasure of meeting Pete in Austin after knowing him online for many years and looking forward to seeing him again......and I've talked to several folks that I've met and known here for a long time ( all from the early days of the board but who are no longer active here) but have never met in person that are coming as well.....AND, I finally get to meet my co-conspirator, err, umm, I mean co-moderator Spiny in person AND, bejeebers is gonna try to make it up from Austin......and, of course, my BFF "hipshot" AKA Hollywood Dan of Nat Geo fame will be there! Shit the bed Loretta! It's gonna get rowdy ya'll......Yeeee Feckin Hawwww! DD
    1 point
  9. I've been on a paleo "diet" for almost a year. I did this to combat the "early stages" of Rhuematoid Arthritis (RA). I just visited my rheumatologist who confirmed my blood no longer has enough inflammation in my body to show up as being positive RA. My first thought was "Eff you a$$hole, why didn't YOU suggest changing my diet?" Thanks to my wife's diligence, we took control of my care. This quack outlined a treatment plan that included a lifetime of methotrexate. Excuse the rant, I still have clusters.
    1 point
  10. @MoxieGirl You are welcome to discuss/recommend your "serious" kinky practice in a separate thread. Leave this thread for rest of the folks who would rather try a simple technique that isn't weird/kinky, doesn't involve needles/pain and is easy to understand and try for anyone. I believe this forum is well-moderated, so leave it the mods to decide what is "misleading" and what isn't.
    0 points
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