fireface

I’m an Emgality fail. Started cycle in October. Got in right away for the two free 120 mg Emgality, Depakote, Prednisone burst and o2. HA’s stopped within a week. I’ve had that happen before with prednisone. At this point I’m still on the fence as to Emgality. Next month I pay $600 for the 3-100mg. shots. Still no HA’s. I’m optimistic. 3 weeks later HA’s are back with a vengeance. A week later I pay $600 for another round of Emgality and it did nothing. HA’s continued to get worse.. up to 8 a day/night. Sleep is a big trigger for me. Even O2 had a hard time aborting the attacks. The only good news is, after a month of pure terror, I should start winding down this cycle. I want my freakin’ $1200 back because Emgality didn’t do shit. It was the Prednisone that gave me the initial relief and O2 got me through the peak period. Bummer. I had high hopes for that stuff. Another failed treatment.

I’m into my 5th. week of an episodic cycle. I just got my second month 300mg Emgality shots. I have been totally pain free since week 2. I’m optimistic. My cycles usually last a minimum of 3 months. I have to pay $600 a month for the shots, but if it continues to work this well, I’m good with that. I even went away this last weekend without an O2 tank. I would have never done that with any other cycle. The neurological center I go to (Michigan Head pain & Neurological Institute - MHNI) was one of the trial centers for Emgality. They say test results were very successful. I have to agree, so far.

Yes, I'm episodic. About 2 months into a cycle. I just got off the phone with Gamma core and ordered it. I figured it was worth a shot even for $600. They said refills are still $600. I go through a lot of o2 that I pay for out of pocket, so if this thing works I'll save on O2. For some reason, I don't have high hopes. Been disappointed so many times with all the drugs they prescribe. O2 is my best friend right now. That was very nice of you to offer that device. I hope it works for who ever got it.

Damn... I would have taken it. I just got a prescription sent to gamma core for a device. They said Medicare doesn't cover it and free trials are not offered to Medicare insured. They want $600 for a month. I'm really on the fence with this one. I'd pay the $600 if I knew it worked, but I'd be highly pissed of it didn't. I'm two weeks into an Aimovig shot and so far it hasn't done jack shit. Bummer. Missed opportunity.

I was just out on a months vacation and took a concentrator that put out 10 LPM @ 85 % o2. It did abort for me. Took a little longer than a tank.. maybe 15 mins., but it worked. Take your O2ptimask that makes all the difference. I also had an M tank in the car in case I needed it driving.. which I did several times. Like Funtimes said, if you fly to a resort it's very easy to have tanks delivered. FunTimes... Thanks for the info on the cruise. I have one scheduled for May. I should be over this cycle by then, but if not it's nice to know I can have tanks on a cruise.

I'm not sure what the test was called. I went in in the evening and they hooked me up and wanted to monitor at least 6 hours of sleep. I believe this was the standard test for sleep apnea, but I figured they would catch my CH attack and progress would be made from there. Well, they caught my attacks but failed to focus in on that particular aspect. The summary did not even include the attacks. It basically just said I had a sleep disorder and I needed a CPAP. I find it very difficult to get medical personnel to cross that line into Cluster Headache. It's amazing how many so called Neurologists can't zero in on this condition. That was just one of about 6 Neurogists I've been to see and none of them can think outside the box. Grrrrrr..

10 LPM max... and I think they rate that at only 85% oxygen. I got that for overnight stays in hotels until I get to where I'm going. It really is a pain to travel like this, but it is manageable.

I went to my O2 supply office just the other day to get a concentrator. I had an attack start just as I got there. I asked the office lady to fire it up and I would try it right now. She only had a crummy little non-rebreather on it and it didn't do jack shit. Boy did they get an eyeful of a full blown KP-10 for 40 minutes. It was a bad one. She felt so bad for me, she gave me a M-3455 liter tank free just to have in the car. They all developed a new understanding of what CH is. Anyway, I've used it at home with my O2ptimask and it will abort an attack if I get to it quick enough. It takes longer.. 15-20 mins. sometimes... compared to my tanks at 15 LPM 5-10 mins. to abort.

I did the prednisone burst at the start of a bad cycle and it killed it within 24 hours. It was a miracle. BUT... It returned 3 weeks later with a vengeance. Stay on it.

For those of you that are anxious or even cancel vacations because of CH.. as I was for years... Here is some reassuring info that I've found out. If you have an O2 prescription.. an oxygen supply company in the area you'll be in will deliver a tank right to your resort. I've done it several times in several states and it is really hassle free. Cost has been very reasonable, also. One supply company didn't have big M or H tanks so they sent out an O2 concentrator that put out 10 LPM. Take your O2ptimask. I can get by with 10 LPM. I'm headed out tomorow for a months vacation and have tanks lined up at all the different resorts. Hope this helps someone.

I went in for a sleep study twice during a cluster cycle. I was so excited they had me hooked up to all these wires and twice a cluster triggered within the first hour of sleep.. which is common for me.. I saw on the raw data where as soon as I transitioned from stage 1 to stage 2 sleep the CH triggered. The Neurologist didn't even look at the raw data. The only thing she said was I had disrupted sleep and I needed a CPAP. I was so pissed. I was in the middle of one of my worst CH cycles and no shit I had disrupted sleep. Another disappointing dead end in figuring out a possible cause or treatment.

Hmmm... I have to wonder why it is said to help episodic and not chronic. ???

Well crap. Another dead end in a long line of disappointing attempts to find help. This neurological center in Michigan is supposed to be the Premire institute for CH treatment. They called back and I wasn't home. Told my wife it's a surgical procedure and they don't do that and blah, blah, blah. We know it's now a portable device, but they didn't. I would pay the $500 to get help. I've paid that much for O2 some months. This sucks.

I just found out about this device and contacted my Neurologist. No word back yet. I was just in to see him a couple of days ago and he didn't say anything about it. I just started a horrible CH cycle and am willing to give this thing a try. In the meantime... O2 is my only friend.

I came away with many possibilities. First on my list is the D3 regimen. Batch gave a nice presentation on its effectiveness. I already contacted my GP to schedule baseline tests. Easy, cheap and it certainly can't hurt.....