Hello, I 'm Millie, I haven't posted in a long time but I have been looking around in the shadows until I found what I was going through. This lastest cycle has really shown me just how much sleep that is does deprive me of. I am a shift worker and it affects whatever my sleep time is( day or night). It ( the headache) seems to allow me just enough sleep to make it to work that day or night, meanwhile it is truly taking a toll on me. I seem to be having 2 - 3 a night, lasting anywhere from 30 minutes to what seems like an hour. I am fighting with O2 and imetrix. I am going to start a prenizone taper, but I don't want to use the preventives. The verapimil and the neurotin don't seem to make a diffence and it makes me feel bad plus I still have to go through the headaches plus I feel bad from the meds. But I need the O2 and imetrix!! Where can I find a Opti-2 mask? Soory to rush in like the wind, but I need some sleep too, It has only been 2 1/2 weeks since the cycle started and the best is yet to come. I can bearly comb my hair because my head in actually SORE to touch.

Gosh Max that beer sounds good, I know if I smelled one right now I would be hit. Sorry to here about the wake ups. Seems the 3 of us are having a time of it with that right now.

4 beers are a good test, you may be coming out of cycle. Got my fingers crossed. I should be able to get a few hours if I try soon, my shot of DHE usually lasts 24hrs or so and I had it @ 4am. So thats 4hrs from now, better hurry!\Best, Don

I got slamed with a K8-K-9 at 1:00am.  Took a Treximet at 3:30 and slept from 4-8.

That sore scalp thing is wierd. I get that too.

So what are you going to the halloween party as?  Advice, don't go as a sailor.


I'm with ya Don.  Can't even look at an empty beer bottle for more than a few seconds.

Only one mild k2 last night, so overall almost 8 hours of shuteye. Things are looking up. He he don't think I'll be going as a sailor. I don't know yet, any suggestions?

Yea that was what I was thinking too;) Hope you both get out off this asap! Snowing like hell here now, sitting in the kitchen sipping coffee watching cars getting stuck on the road, pretty happy I have 4wheel drive on my car

Hi guys!

I am little pissed off right now. Thought I was heading for remission but no such luck, or the beast is having it's final saying. Been waking up every 2 hours with k6 last two nights, they are not that painful, but they linger on for atleast an hour and it's pissing me off real bad. I am hoping that it is the final gasps and not some sort of recycling back to peaking again.

I'm tellin ya, there is someting in the air.  Best I can get the last two nights is 1hr at a time.

AAAARRRRGGGGGHHHH !!!!!!

At least I got the O2 and seems to do the job.  I've got to get a better mask though. The one Binson's supplied is not very good.

                                     Pooped Out
                                           JPC

Hang in there Max.  I know that's disapointing  Like gettin the rug jerked out.

I sure wouldin't be flirting with the alchohol, but that's me.

Don't let those Jarheads take advantage of ya tonight.

                              PFD's On  Ya

                                       JPC

I have noticed that my night time hits are always worst as the days are getting longer or shorter. I usually get it in the evening between 4 or 5 to 8 or 9 time period every day of the year. The night time hits only come in the spring and fall. I used 4 M's last week but I am better this week.

A tip from me would be that when you wake up and sit there rubbing you neck and head wondering if it will subside, train yourself to get up immediately and hit the O2. I have completely trained myself to do this and never wake up to a screecher any more. If you don’t wake up till you’re at K6 the O2 will take a long time to bring you down. Now that I wake up immediately at the start of the hit it goes away a lot faster and I fall back to sleep much quicker also.

I don’t use a mask any more because the things are crap and give me a sore nose so I use the mouthpiece and exhale with my nose or pull the mouthpiece away. If you don’t exhale through the valve it will last a long time. I don’t even have the exhale valve on the rig anymore and it seems to work even better. Some day when I can afford it I want to try a demand mouthpiece.

I use those big freezer bags and they last about 6 months. Cheep and always at hand in the kitchen.

The best thing on the tank is a FLOTEC regulator click style with 60-40-25-15-10 settings. 25 LPM is perfect for me and 40 gets ya numb. I haven’t had a K10 since I got the HF reg.

PFW’s guy’s

Roland.

Maybe Ya got something there Max.  I not willing try the beer test just yet.

I got 8 hrs sleep last night myself.
Against my better judement, I took a Treximet at 11:00.  Went to be at 11:30.  Up at 12:00 with an attack ready for another shit night.  Hit the O2 and stayed up til 1:00am.
Made it through the night with no attacks. Woke up a couple times but no pain. Got up at 9:00 this morning.

Nice to get some sleep.  A little wigged out today from the Treximet but no shadows, no nuthin.

Hope all of you had a decent night.

                                  PFD's On Ya
                                      JPC

Hi guys, resent events: NO HITS at all, slept 10 hours last night so I am guessing the beast got drowned friday night... hopefully:-) Hope you are seeing the end of this shit soon!

I can't believe how similar our cycles are.

Last night was episode free.  Woke up a couple of times during the night but not due to any CH.  Man did that feel good.

I'm down to 120mg of Verapamil.  That will be finished after tomorrow.

I hope we are all on our way to PFDAN's

                                 good luck to all
                                     JPC

So CLose.

I'm down to one attack a night.  I get hit about an hour after falling asleep. Hit the O2 for about 10min, get up and have a coffee or a coke, go back to bed in about an hour and sleep through til morning.

I can almost taste the Miller Light.

I hope you all are doing as well or better

                                             JPC