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Texas Cluster

extending my hand too all

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It's been nice to learn about others but at the same time awful to hear about the many sufferers out there.

   My name is James, friends call me Darrin I am a 40 year old CCH sufferer, I have been reading and learning more from this site about a possible relief and I am on the hunt.

  I will post after my dose and let you all know how it does.

I have been suffering for 15 years now the last 3 years have gone chronic and has ruined my life. my wife and son make the pain worth sticking around but I will search the world over for my remedy and when I find what works I will share that as well, but we know its different for everyone this seems to work for many and now its my turn.

   Well here is how I describe mine...left side 2 to as many as 4 a day and as many as 3 back to back all since I have gone chronic, my left eye feels as if I was hit with a ball-ping hammer a couple of times, touching the eye is out of the question while enduring one, the nose OMG where does it all come from? I learned early on NOT to blow the nose..the pain intensifies I let it flow breathing in and out of the mouth when not holding the breath and clean as it comes.(the runny nose) I have never had 8 teeth pulled at once but my upper left row of teeth sure feel like they are being removed from my head @ one time. ice pick in the ear, I have heard that more than once from others. I also want to share that I crushed my lower fourth lumbar 20 years ago and would much rather do that daily than go thru what I do today....and I have a very high threshold for pain. and feel sorry for those who don't cause I hurt bad when under attack from this monster. 

After about 4 years of suffering I went to a headache clinic in Houston and was told that it sounded like clusters this was the 1st I heard of them..went home did some research to find next to nothing on them at the time. now that I have gone chronic I have been seeing Dr's and being treated with ergotamine, verapamil and zomig 5mg one shot nasal spray..the CCH just got pissed now I cant go by the time anymore, they hit in a 3 to 4 hour window now..and just last Friday I had 3 back to back I have to find some kind of relief. My Dr has referred me to another and together they want me to try the Gamma Knife but side effects are numb face and or a dry eye I want to try more medicine first before I try surgery, and researching it is what led me here.

      Bob, [smiley=dankk2.gif] for this and all you have done I have been reading and learning from the site and it wouldn't be possible had you not taken it over, the last 5 days of reading has brought hope that I may be able to find reduction in the numbers and intensity.

So enough for now? I am bored and could go on to finish out my remaining 50000 characters, but I wont and now I will extend my hand to all in the family and look forward to being an active member [smiley=vrolijk_26.gif]

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Welcome Texas Cluster,

Sorry you needed to find this place, but awfully glad you did. There's a lot of information here and on this site http://www.clusterheadaches.com/ which is more devoted to traditional remedies and also has a message board like this one. I'm sooo glad you found this site before going under the "gamma" knife.

Btw, a good man, fellow clusterhead and Texan named Dallas Denny lives up by - you guessed it.

Good luck,

Ron 

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Welcome! I am also new to this site, as well as clusterbusting, and a couple of weeks in I have found the HBWR seeds to be sent straight from heaven. I only hope that you find the success that I have so far!

Keep us posted

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Okay, I canceled the Gamma Knife for today the neurosurgeon prescribed me Lyrica..gonna try this and see..calling Dr. today to see if I can get some oxygen for the rough times and still on the hunt for some cows. I know where to find them just being seen or caught early mornings in a field of cows worries me..

Officer I was just cow tipping ;D

let you know how lyrica works soon takes time's to take effect. [smiley=undecided.gif]

Texas Cluster

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Hey Darrin!!

Really glad to hear you said NO to the gamma knife!!!

It's been many years since I picked in the wild, but I always tried to go on a clear, moonlit nite.....would slip in the field at midnite, pick 3 or 4 hours and back out before sun up!!  Like I said, MANY, MANY years ago....LOL!!!

Kinda confused bout your doc's precsription for Lyrica....I've heard of the name before but no first hand experience.....all I could find on the net says it's used as an anti seizure med and for fibromyalgia.....maybe someone else here will know of it's use for CH.

Anyway, Good Luck on all fronts and sendin you some PF wishes!!

Dallas Denny

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Hi Darrin,

So glad you found this place.  I am new too but have already met some wonderful people here and as you know from my PMs have already started the process.

Dan's attacks have improved significantly after two doses.  Oxygen is working better than ever.  You must get a non-rebreather mask.  It can be ordered from ch.com.

Best of luck to you and wishing you PF days in the future.

Lee Ann   

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Okay, I canceled the Gamma Knife for today the neurosurgeon prescribed me Lyrica..gonna try this and see..calling Dr. today to see if I can get some oxygen for the rough times and still on the hunt for some cows. I know where to find them just being seen or caught early mornings in a field of cows worries me..

Officer I was just cow tipping ;D

let you know how lyrica works soon takes time's to take effect. [smiley=undecided.gif]

Texas Cluster 

You always start with the HBWR seeds, if you wanted to

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I know it's hard to get in to see a neurosurgeon, but this guy scares me. Maybe try some of the medications he suggests, but for sure no surgery of any kind (i.e., no alterations to your brain) until you've tried a lot more things than you have, including psychedelics.

Michael tried Lyrica a while back. It did nothing for his CH. Fibromyalgia and diabetes can cause nerve pain. Lyrica relieves nerve pain by "confusing" the brain's perception of that pain. I have degenerative disc disease. One part of my spine that the disease is currently effecting is down near the bottom where nerves exit that feed my feet and legs. As the discs between the vertebrae degenerate, more and more pressure is applied to those nerves and in my case, it feels like I'm standing barefoot in the snow. I take Lyrica, which alters that sensation. Now, rather than feeling frozen, my feet just feel numb. Lyrica's a really good drug for me. I'd be surprised if it did anything for your headaches.

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I'm very happy to hear you've put the gamma knife on hold.

I did the same about 8 years ago when they had only tried it on about 6 people with clusters and I was already scheduled.

i decided try mushrooms first and havent looked back since, except to thank my lucky stars.

I'm actually pretty upset about the direction of some of the cluster medical community (doctors, researchers) devoting all their resources toward different surgeries.

They all continue to show poor results. Two separate 6 person studies on the DBS have each caused the death of someone in the study, yet they continue. One has to wonder if the $150,000.00 price tag has anything to do with it.

I actually though they had given up on the Gamma Knife some time ago.

Bobw

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I have been thanking my lucky stars for 1 month 12 days, not that I'm counting.

Wish you best of luck, It worked great for me.

Steve

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well the Dr. that's been treating me is someone I found researching another Dr. Wayne Hunt..he perished in a house fire the Sunday before my Monday appointment and the Dr I have now followed allot of his research...my Dr is a migraine specialist and did me some good while I was hospitalized for a week..after the verapamil and the ergotamine treatment and knowing my severity of the numbers and intensity he wanted to try the Gamma Knife...side effects could turn out a permanent numb face and or a dry eye I would have to have drops for 24/7 and no guarantee it will work for the ch's..so my luck would be that I end up with all three when all said and done..so NO! not till I tapped all meds first. now the Lyrica...as Bonkers says it did nothing for Michael..but we all know different meds help different sufferers, but I want to see if its it or not for me...and I agreed to take it cause of the low side effects and that it wouldn't interfere with the busting if I locate some...

    I want to thank everyone for the welcome and the care, it's nice to know I am not as alone in this as first thought.

   today was terrible, I was awoken at 4:34 already late for the zomig shot, but did it anyway..I shot out to my truck to prevent waking the wife and son and when I closed the door I could feel all my pores open all over my body and was feeling clammy, so I came back in and did wake them :-/ then 2:30 this after no one I was it hard for some reason after the peek the cluster and where is normally just starts to go away to nothing it seem to linger in the eye allot longer than the norm. and in the past when it did anything like this it would start up again..this time it stayed in the eye for 10 to 15 minutes...then I crashed on the cough for I don't know how long....thinking I need to start a journal..never really did

anyway..Thanks all  ;) feels good to let it out

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Lyrica is NOT without side effects! I'm not trying to dissuade you from trying it; just be careful. When I first started taking it, I took too much and went crazy - really crazy - until the effects wore off. Please, be careful.

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morning all..o.kay..I have received my oxygen, and it doesn't seem to help much, in fact in a few tries I got more hits back to back..I started it at onset,and it did get my sorta light headed and I figured that's whats helping everyone..but yesterday I used it onset and when what normally feels like it is going away it just returned..3 in one sitting. to me the oxygen felt like it was feeding them..am I doing something wrong or is this just me and the way my headaches react? :(

     Darrin

Texas Cluster

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How are you using the O2? It should be with a non-rebreather mask (the kind with the bag and all holes on the mask covered when you inhale), and your regulator needs to be set at a minimum of 15 liters per minute. 25 lpm would be better - if it goes that high. You want to be breathing NOTHING but pure O2, and bordering on hyperventilating.

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well my Dr. prescribed me 7 lpm, but I have a gadget that goes to 8 lpm and that's what i use..do maybe that's the problem..calling Dr. now for 20 to 25..and I have the mask..with holes..so I will also be asking for the mask with the bag and and covered holes.

Thamks for the responce Brew

  Darrin

Texas Cluster

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Hi Darrin,

I'm far from being an expert on oxygen use, but I know that there's a LOT of information both on this site and the ClusterHeadache site (http://www.clusterheadaches.com/wwwboard2/index.html) where you can learn the proper use of oxygen to treat CH. I strongly encourage you to thoroughly read that information and ask questions about things that you don't understand before abandoning your oxygen tank.

Good luck,

Ron

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I was on the phone seconds after Brews posts, and told the Dr. office that I needed something more, that the 7 lpm just wasn't working and that I asked experienced sufferers what I was doing wrong, and the min. and ideal use of oxygen. I told them what I learned and that I need some relief from this beast.."I have had enough" so they called me back saying Dr approved a 10 lpm..I was sorta upset, but at the same time willing to try anything... so we sill see how the 10 lpm's work..not much hope here being that I have that gizmo that goes up to 8 lpm and that's what I use with no effect on relieving them.

Thanks for the response on this..

    Darrin

Texas Cluster

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what kind of O2 tank do you have? I may be able to find a regulator that can spit out 25lpm for ya. There are usually some on e-bay for relatively cheap.

I bought mine from Flotec. It was a little pricy, but well worth it. It ranges from 0-60 lpm, and has a Diss fitting to go with demand valve in the future. it's CGA-540(nut and nipple) fitting, which means it's for the bigger tanks (M and up). We'll get you set up.

O2 roolz,

Eric

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Hey Darrin!

I'm thinkin if yer doc gave you a script for 10lpm then the supply house is gonna have to give you a regulator that goes to 15lpm.....I may be wrong about this but I've never seen an O2 reg that topped out at 10lpm. 

DD

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Perediablo I got 5 E bottles been through 2 already since Friday..I still haven't gotten the 10lpm regulator the medical supply company cant seem to get things straight.. and I am waiting on the 10lpm and DD I sure hope it goes over..I will take advantage of it..and like I said before..I was prescribed 7lmp and the regulator doesn't even have a 7..has everything else like 2..2.5..3..3.5  on up to 6 then to 8..funny how 7 is the only one missing..lol..going to see the Dr. next week and I am going to beg for more if I don't get it...just like I beg for the beast to leave..

    Thanks guys

    Darrin

Texas Cluster

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