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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › HELP!!!

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HELP!!! (Read 968 times)

Pfunk

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HELP!!!
Aug 15^th, 2011 at 5:37pm

I have been back in cycle now since the beginning of June. I started back on my usual 1200 lithium, 50 topopmax, etc. I use O2 to abort and imitrex if I cant get to O2. I even started taking Batch's vitamin regimen(which gave me 2 weeks of relief immediately). It seemed like the cycle was about to come to a close. And then, last week , I had to go in the hospital to have a cyst removed. They put me on Adivan and morphine. At this point all hell broke loose. It was like the beast took this as the oppurtunity to run roughshod on me! The last 3 nights have been the worst I've had in many, many years. Yesterday I left work early and today, I missed work for the first time since May 2009. The HA's are coming back-to-back-to-back. O2 and it comes back 30 mins later. Trex and comes back an hour later. Am at my wits end. Feel like I truly am losing a battle I have been winning for the last 2 or 3 years.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: HELP!!! Reply #1 - Aug 15^th, 2011 at 7:03pm Have you thought about visiting our sister site? Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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LasVegas

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old, now 50.

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Re: HELP!!!
Reply #2 - Aug 15^th, 2011 at 9:07pm

Hang in there Pfunk...you know we are all here for your support. I'm sure you've read everything after years of being on this site, but there is always a possibility something may have been misunderstood and a refresher of re-reading might prove valuable to you.

As you are aware the Imitrex can cause rebound HA's and O2 should be at high flow, for hypervenilating so you get rid of all carbon dioxide, with a non-rebreather mask and keep hyperventilating 5 or 10 minutes AFTER your attack is gone.

Definitely stick with the healthy non-toxic "Batch regimen" and maybe PM Batch to inquire what his thoughts are of upping the D3 to 15,000IU daily as this has really helped many, so i've read in the "123 days" post.

Are you under a doctors care or self medicating with a stockpile you stashed for rainy day? Might be worth experimenting with higher doses of Lithium or Topomax you're on. Might be worth a Pred taper just to get some quality of life returned temporarily while you switch to another preventative that could prove effective such as Verapamil. Just trying to make suggestions for you to consider speaking to your dr about.

PF wishes to you Pfunk

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: HELP!!! Reply #3 - Aug 16^th, 2011 at 2:43am An energy drink, like Red Bull or Monster, with both taurine and caffeine can help keep the rebounds away after an abort using oxygen.
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bejeeber

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Re: HELP!!!
Reply #4 - Aug 16^th, 2011 at 4:28pm

Hey Pfunk,

That sounds like a monster episode - really sorry to hear about that Sad

I'll just echo what the others said about energy drinks extending the O2, looking at the clusterbusters option, and staying on that D3 regimen (and maybe even double checking to make sure you're still following it to the letter?).

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Pfunk

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Summerville,South_Carolina
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Re: HELP!!!
Reply #5 - Aug 16^th, 2011 at 11:38pm

Guys thank you so much for the ideas and input. Yes, I am using the non-rebreather with high flow O2. It just doesn't seem to be working as well as it has in the past. Imitrex has now become a last resort for me. as I have experienced many of the dreaded rebounds. However, yesterday I tried something scary(to me) and maybe a little strange. I decided not to take any medicine at all for the entire day. Oddly enough, I stayed HA free and was able to get some much needed sleep without any events or visits. Not so much today but the one night was awesome.
I have been reading up as much as I can. In fact, I got some real interesting stuff from you guys about testosterone replacement. Gonna talk to the doc Mon or Tues about testing my levels. Fortunately I have a HA specialist and GP. My GP has been treating me since I was 11 and is very good about trying just about anything I bring him from here. He has even admitted that what he knows about CH, he learned from me and/or for me. So, with his help and yours, I'm gonna whip this bastard. We've been fighting this battle 30years(for me) together and I ain't stoppin now. THANK YOU! MUCH LUV and PF WISHES!

Pfunk Cool

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Guiseppi

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Re: HELP!!!
Reply #6 - Aug 17^th, 2011 at 10:19am

Sounds like you have a good team working with you. I'm 51, a 33 year CH'er, last cycle oxygen suddenly lost it's effectiveness. Scared the hell outta me. At Batch's suggestion I went on his PH altering supplement regimen. It consisted of Calcium Citrate, Magnesium and Zinc, washed down with fresh lemonade, up to 4X daily. I went with 3X daily and in less then 36 hours the 02 was kicking butt like days of old.

Batch posted a lengthy scientific reason for why altering your PH level makes you less succeptible to attacks, I just know it made my oxygen work again! I am now permanently on the Batch daily regimen from that infamous "123 pain free days and I think I know why" post.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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