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Double A

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Double A last won the day on October 30 2020

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  1. Thought I'd provide an update - you all have really helped me with this cycle! I was really dreading it since I was no longer able to use the Imitrex, but with your help I've learned how to use oxygen effectively and can now get it at reasonable price and not worry about rationing it or running out. I got the large tank rigged up with Batch's Redneck Reservoir Bag and haven't needed to buy the 25L regulator for it. I also started the D3 Regimen about 12 days ago and it's helped to dramatically reduce frequency. Only getting about 1/day about 6:30am which is easily knocked out with the O2. It's so good to be able to sleep through the night. Hoping soon to be pain free. Thank you all for the help you give others.
  2. I understand. No apologies needed! It's important to vent in a safe and supportive place. The beast lives for those ass-kicking days - keep on fighting and I hope you kick it right back!
  3. So sorry to hear it's a bad day. Do you have options that work for you Hhh? There is lots of good support here and ways to find help and hopefully relief. I am episodic and cannot imagine being chronic. Oxygen works for me and I am able to get it paying cash very reasonably. I've also just started the D3 regimen, which is inexpensive and has really reduced the attacks.
  4. As a way to cope with this crazy disease, I thought it would help to imagine my Cluster Headaches as characters in a cartoon strip. I wonder how my imaginary "Cluster Boss" demon must feel when he's working on my cycle. Maybe he's as frustrated as I am! Just my perverse way to find some humor in this horrible disease.
  5. I'm in Beaufort, SC - between Hilton Head and Charleston, SC. I'm getting oxygen from Resource Medical Supply Group https://resourcemedicalgroup.com/ who have multiple locations in SC and one in Savannah GA. By paying out-of-pocket, its $10 per E (M24) tank (680L), and they just got me an M122 tank (3455L) for $25. So the bigger tank is quite a bit less. I haven't finished my cycle so I'm not sure how much I will be spending. As long as they can keep my on the larger tank for most needs, I think it will be pretty reasonable. By comparison, they told me it would be $100/month for oxygen delivery service if it were covered by insurance. The store is only 3 miles from my house, so the proximity makes it very easy to get to for me. My focus right now is to make sure I can get sufficient oxygen from a steady supplier. They only had a 8L regulator for the large tank, so I will order one of my own. So I'm trying to get both sizes of tanks, and 25L regulators for both sizes.
  6. Hi Marlon. You are not alone. I started my latest cycle Sept 20 and been getting the attacks about every 2hrs. each night. I'm 48 and got my first CH when I was 14, and been getting them every 1-2 years since I was 18. Are you on any treatments that are helping you? When I could take it, I found Imitrex shots really helped get me through the nights. I would take one with the first night time attack and the I could sleep most of the night, sometimes til about 6:00 when a new attack would happen, sometimes later with no attack.
  7. Such great feedback CHFather, Spiny, and FunTimes! Thank you so much! I am definitely looking into this. I had already been taking increased daily vitamins this cycle and trying to amp up my dietary Magnesium intake, but didn't know about this laser-focused regimen until you guys mentioned it. I already ordered a ClusterO2 Kit and started using it three days ago - so much better than the crappy stuff they gave me at the medical supplier - a hi flow cannula and a pediatric face mask (they didn't have any adult ones in the store). I also ordered a 25lpm regulator from Amazon and waiting for it to come in. I plan on getting some 5-Hour Energy and see if it's helpful for me. I suffered a stroke last year and have been on meds to prevent arrythmias (Atrial Flutter) that are related to surgery I had as a child to repair a congenital heart defect. Since the stroke, and the addition of blood thinner meds, the neurologist told me I couldn't take Imitrex any longer and prescribed 100% hi-flow oxygen as my abortive. I didn't ask about other triptans. I have tried ergatomine, lithium, and prednisone in the past. Only the prednisone seemed to help. I actually called the neurologist office yesterday and asked them if they could prescribe some prednisone to try again. They actually did it without needing to see me in the office. I was stunned! Even better, I started the prednisone and no attacks last night!!! The oxygen has been great as an abortive, but sleep deprivation has been really rough as my cycle in getting into the red zone. I was getting up 3-4 times to fight off the beast. Around 12am, 2am, 4am, 6am seem to be the times they like to hit me the most. Of course prednisone is only for a few days, but I have increased Melatonin to 20mg to see if it will help reduce night time attacks also. Hopeful!
  8. FunTimes, I haven't tried 5hr energy drinks yet, just some Red Bulls. I don't like they way they taste, but if they help kill the attack… I keep coming across the D3 regimen on the forum so I'll definitely investigate further. I have used ice packs with some success - l think you're right that they can provide some distraction which can be helpful. A hot shower with the spray right on the left side of my head is the best way I know to provide relief for the ones that just won't die. But after about 30-45 minutes even that starts to lose effectiveness. Each cycle I get about 2-3 killer kip 9-10 attacks that nothing can put down.
  9. Thank you so much for your helpful response CHfather! I live in a small town so I'm not sure how close a welding supply would be but I'll keep that in mind. I've just started trying an energy drink at onset of daytime attack, but try to avoid caffeine at night when most of my attacks hit. During the day I can usually abort with intense exercise - usually on a stationary bike. I've read that exercise is a trigger for some, but for me it has been very effective. So my latest strategy is night time attacks = oxygen, daytime attacks = exercise + energy drink. What caffeine drink works best for you? I'm able to abort most attacks at 15L at about 10mins. Are you able to abort them faster with 25L? I used to able to abort most attacks in about 5min with Sumatriptan injection, but unfortunately due to another health condition/medicine I can no longer use that.
  10. Thanks for the tips FunTimes. If I can pay half the price that would be fantastic!
  11. I just started hi-flow oxygen treatment for my episodic CH. I was doubtful at first since I tried oxygen years ago and it wasn't very effective. At that time, I think it was low-flow and breathed in through a nasal cannula. This hi-flow (at 15L) through non-rebreather mask is actually working great! It has knocked out virtually all the cluster attacks since I started it. My only challenge now is that it's not covered through my insurance and I am paying for each bottle I use. I'd like to get a higher regulator (25L) since I can't breath in as quickly as I would like and I haven't yet hit my peak cycle, but I know that will mean more oxygen bottles and more $$. Anyone have any tips on getting insurance to agree to cover oxygen?
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