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signals61

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signals61 last won the day on February 11 2020

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  1. Personal experience update: Nurtec was effective for the first 24 hours or so, but didn't make the 48 hour goal. Last night, within the 48 hour window of initial medication, the first visit of the beast came at the usual 1:30 AM time. I think it was not as intense as usual. Pain only, no rhinorrhea, conjunctival injection, or lacrimation, and I spent 10 minutes on the tank before heading back to bed. Normally I'll get three visits during the night, but I'm on the tail end of my cycle right now, so I can't use the reduced attack count as a guide. So maybe it still had some kick
  2. All good questions @Pebblesthecorgi What I can tell you right now regarding cost/insurance: My doc and I really didn't consider it at this point. The first script wound up being free with a doctor provided coupon. The pharmacy listed the retail price before the coupon at $1003.99. GoodRx says I can get it as low as $864 (retail without coupon or insurance). A package contains 8 pills, and that's supposed to last 30 days. Maybe for the average migraine sufferer, sure. But for us CH folks, at best, that's 2 weeks (assuming it holds true to the data, 1 pill every 48 hours). If my insuranc
  3. Early review - Took the Nurtec last night - I was just starting an attack, but it wasn't in full bloom. As you all may know, it's a dissolving pill, so you just put it under the tongue and let it melt. It has a light mint flavor, not unpleasant.Fully dissolves in about a minute. True to the literature, within an hour the pain was gone. So not as fast acting as the triptan injection, but it did seem to be effective and without the heavy chest sensation I get from the triptan. The only side effect I may have had - I had a hard time falling asleep. Hard to tell if that's just the
  4. My doctor also suggested I try Nurtec at my annual last week. I picked up the script today and I've been doing as much research as I can get my hands on. Like @kat_92, I'm suspicious when it targets migraines but doesn't specifically mention clusters. I reviewed their web site and couldn't find a single mention of cluster treatment. Also, literature says it can take anywhere from 1-2 hours for pain relief, so if I'm using it as an abortive, I don't know that that helps much. That said, it says it prevents them for 48 hours after. That could be good. They seem real proud that it reduces t
  5. Second Update from the OP Well Hallelujah and pass the ammunition. Last week I got a call back from my Doc's office, they needed help filling out a form from Aprila Healthcare for the O2 setup. They asked me all the medical questions again about our condition, stuff I know is in my record, but I'm in no mood to complain since it looks like we're making progress. Stuff like eye swelling, nasal congestion, consistent pain location etc (you know all the symptoms). She says she's sending the form over to Aprila and they should contact me. Sure enough Aprila calls me Friday to set up an
  6. You know, I don't want to sound like I'm wealthy or anything, but cost really isn't the issue for me. I'll gladly pay out of pocket. My problem right now is everyone seems to be saying that they won't sell it to me, even with the prescription and the cash. Bearing in mind, I'm trying to go the "medical" route, using medical grade tanks. I found a source on Amazon that will sell a filled industrial grade tank. I know that many have said over and over that the safety is not an issue, I just really wanted a clean tank, rather than one that's been sitting in an auto shop for the last 6 months,
  7. Update - Airgas, Here in Tennessee, will not deal with me directly, even with a prescription. The guy I spoke to said "It would be illegal for me to sell you oxygen". He referred me to Apria Healthcare, so it appears he gets the question often enough to know what to tell folks. Tried calling Apria - they still have some hoops to go through - need to call my doctor's office and have them provide the doctor's office notes and demographic information by fax (Hello, 1985 called and they want their technology back) I'm still not sure why these companies need all this additional info. You
  8. Before I begin my rant, or preaching to the choir, I want to thank many of you who have shared your stories with me over the last few months. I'm currently off cycle, on the D3 regimen, and having just visited my GP yesterday for a 6 month follow-up, wanted to relate a couple stories: I guess I'm lucky. My GP is very supportive of my condition. He admits he doesn't see it very often, hasn't had a patient with it in about 20 years, but he listens to me and generally helps with the proper prescriptions I need without objection. This saves me from having to make special trips to the Neurol
  9. Hi Newbie, I have a similar history in that I experienced my first attack at the age of 19 (I'm 58 now), I was in the Army and the Army docs had no idea what they were dealing with so they just injected me with Demerol or Morphine to kill the attack. Didn't get diagnosed until roughly 4 years ago. I have what is referred to here as episodic attacks, usually once a year, lately twice a year. The attacks last about 45-60 days. Thinking back, I may have managed a year with no attacks, but it's hard to remember that far back. My General Practitioner initially prescribed Sumatriptan in
  10. Thanks so much for the kind support. Regarding travel with all the vitamins, I'm going to take Jonathan's advice here and get photocopies of the pill bottles, then put everything in ziplocks. I agree that TSA shouldn't care, but every once in a while you get someone on a power trip. Last week, in Minneapolis, they did a full scan on my luggage because my deodorant was right at the 3.2 oz size limit. Of course they do that only when you have a tight connection... Jonathan: Dude, I can tell you stories. Everyone wanted to buddy up to the commo guy. I was in tactical ou
  11. Hello all, Super long post coming. Sorry, I feel like i have 30 years of frustration to get off my chest. I found this group a couple weeks ago and have been digesting information since then. I can't tell you how relieving it is to know that I'm not making this stuff up in my head, that it's not just a headache, get over it. I'm episodic and I've been suffering from this since around 1980, got the first attack when I was in the Army at the age of 19 or 20. I'm 58 now. I still remember that first attack because it was without a doubt, the worst one ever. I really thought I was
  12. Just replied to the other thread about flying - I fly every week for work. No choice in the matter if I want my bills paid. I've not been able to attribute a CH to the flight or the pressure/altitude change itself. If I'm off cycle, nothing happens. If I'm in a cycle, something else will trigger the CH. Most of my flights are non-eventful. That said, if I do get a CH while airborne, they are particularly severe. Sitting in a confined noisy space just makes everything suck more. I always travel with my sumatriptan injectors, and am not shy about injecting right there in my sea
  13. Hi "ThatHurtsMyHead"
    I'm new here, been a CH sufferer since 1983, only properly diagnosed about 4 years ago. Yes really. 30 years.

    Anyway, the reason I'm writing on your feed - I was reading in another post that you were in the military and were misdiagnosed. As was I. I was a communications specialist in the Army (Microwave communications - often speculated about cause and effect, but that's another story).

    I had my first attack in the military. It was without a doubt the worst attack I've ever had, so much so the barracks CQ had me sent to the base hospital. There, they didn't seem to know what to do, so they gave me an injection of Demerol, and sent me on my way. It worked, but then you could've hacked my arm off with a grapefruit spoon at that point, and I wouldn't have felt it. 

    No doctor ever got past the the basics. Hell, I didn't even start putting the symptoms together for a few years. There wasn't an internet then, so not a lot of information available to the average lay person. 

    My question to you - did you ever get a disability rating from the VA? All these years later, I'm being told by several friends I should go file. But other than the possible existence of admission records from the base hospital, I have no real record of this being a problem while I was in. Due to a death in the family while I was out-processing, my paperwork was rushed, and I kind of got screwed on a lot of stuff. 

    I'd appreciate any help or advice you can offer. 

    P.S. - I'm now maintaining well with Sumatriptan auto injectors. My corporate insurance plan only deems it necessary to give me a dozen every 3 months, so I make sure to get the refills even when I'm off cycle, so I can stock up. I'll be looking into "busting" after doing a LOT more research. 

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