Leaderboard

Hi all, I'm just throwing this topic out there to see if anyone else has this combo. I've had ch for 15 years and was diagnosed with ms 4 years ago but had symptoms for a couple years before that. The ch makes my ms symptoms worse which sucks. Anyway, I believe both ch and ms are malfunction of the immune system so I was wondering if anyone else had this combo? Thanks

O2: The specialist is correct. A cannula does not supply pure O2 which is what you want. If you go to the main page, open the Clusterbuster Files, and look for the thread on O2 and open. It will give you some great info on how to use it properly. You want a minimum of 15LPM and a non rebreather mask or brathing tube. No outside air at all. Exhale fully - hard. Inhale deeply, hold for several seconds and exhale with force. Repeat. You want to stay on the O2 for about 5 minutes after the pain is gone, lower the flow rate and breath normally. This prevents the quick return of the hit. The bag on the mask should fill during your hold and exhale so that you have plenty for the next inhale. O2 is a life saver when used properly. While you are there, read the D3 file too. Just vitamins and very helpful for many of us.While I did not get to PF status on it, it slows my ramp up down and lowers the intensity of my hits. All good for you stuff, no script required. Have you checked it out yet? You likely will need to take somewhere between 9mg-25mg of Melatonin at night for relief. I often split my dose - 20mg at bedtime and another 10mg later after a hit. Dopamax sucks!!

Hi Jimmy, A lot of us around here would agree your specialist made the right call about topomax being too heavy. Many have come to refer to it as Dope-a-max, Dopey-max, etc., and find it messes with the cognitive processes way too much, plus it isn't that effective. For CH'ers who are typically awakened with an attack an hour or so after falling asleep, I've seen reports of an oral triptan before bed working as a preventative, so I guess I shouldn't be too surprised to see the frovatriptan being prescribed in that manner. Maybe you've started researching busting at this point? It has the potential to knock out entire CH cycles, which can be nice. You have to be "de-toxed" from triptans for 5-ish days before trying it though. I had an acupuncturist do a great job of rapidly ridding me of some tendonitis in a wrist before, so I'm a believer, but I'm sorry to tell ya it has scored low when it comes to directly treating CH.

Spiny: Thanks my CH friend. I think I might have found the issue that "may" have triggered my CH after 13 years. I'm still a smoker (I know I need to stop) It dawned on me that I changed from Parliament Lights to Marboro "Red Label" about the time my CH started again (one week later) I decided I really need to stop outright. I had a serious case of Bronchitis about 2-3 years ago & my doctor gave me Predisone & it worked within hours! It's done the same for me with my CH (day 5 now) I'll ask for a couple of refills when I visit my neruo. in a couple of weeks. I'm hoping that I go dormant again. From what I gather Predisone isn't the best for your body in general, hence the tapper. But...I'll take it if it get's me out of pain. Be well Spiny.

Oh, and I did have an MRI done just before all of this started and it showed nothing out of the ordinary.