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Cluster Headache Help and Support >> Getting to Know Ya >> New to the Forum...but not to CH http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1224734154 Message started by BlkJack-21 on Oct 22nd, 2008 at 11:55pm |
Title: New to the Forum...but not to CH Post by BlkJack-21 on Oct 22nd, 2008 at 11:55pm
Hello Everyone!
I browsed this forum at the end of my 3rd cycle and made a mental note..cause I knew that the beast would return. :( At the time I was finally diagnosed w/CH and in line to see a neuro. Well I'm now a week into my 4th cycle (after about a little more than a year of remission)...which will last 8 weeks (strange thing about CH isn't it...know exactly when you are going to have an attack and how long you have to endure the cycle?!?!?!) Anyway...I found out about Red Bull on my own (and I knew that caffiene was my friend) THANK GOD for Red Bull!! I do have 2 questions though. I have seen many comment that O2 is a savior for abrupting these debilitating attacks! Is this something I should strongly pursue with the neuro? or see if he mentions this as an option? And secondly...I haven't seen much about this...frankly I know that when the CH is full blown, I have to pace the house for at least 20-30 minutes before it begins to subside...I have discovered that if I lay in a certain position when the "shadows" start rearing their ugly face...I can minimize the length of the peak of the CH. My CHs are on the left...and if I lay on my stomach with my head elevated on a couple of pillows, with my right cheek on the pillow...this works. If I lay in any other position...ie back..it gets worse and progress rapidly. And if I am awoken with a CH...forget trying to lay in bed!! My question is has anyone else found that a certain position in bed helps alleviate this? |
Title: Re: New to the Forum...but not to CH Post by Callico on Oct 23rd, 2008 at 12:14am
On the O2, the answer is simple, YES!!!
As to position, if I am about to get hit there is no way I can lie down in ANY position, or sit, stand, or anything else that is still. I will be moving. The stronger the hit the more the movement. I may just be bouncing a knee on a light level or pacing and pulling hair at a 7-8 or on the floor in a fetal position rocking and thrashing in a 9-10. Jerry BTW, Welcome aboard. |
Title: Re: New to the Forum...but not to CH Post by Just Plain Carl on Oct 23rd, 2008 at 12:16am
Hello Blckjack-21,
The majority of my attacks come on after sleeping 1-2hrs. They are usually full blown k7-k8 when they wake me up. Pretty much too late for anything other than doin the Pace Walk. Too late to lay in bed in any position. Everyone here will tell ya that 02 is the way to go good PF luck to ya JPC |
Title: Re: New to the Forum...but not to CH Post by BlkJack-21 on Oct 23rd, 2008 at 1:11am
Thanks for the welcomes!
I recently had a cold and thought I was just having congestion...well tonight I had K8-K9 and could not lie down. And now it has subsided to a K1-K2..So I now know I am in the beginning of another cycle. And I remembered this site and told myself that I would return. The position thing...was something I discovered at the end of my last cycle and wanted to inquire about it...Since I read quite a bit of literature and couldn't find anything about it. I figured I would ask people that are going through the same thing. As far as my CH...it is basically textbook. L side. Icepick behind the eye that radiates into the jaw and sometimes neck. Same time every evening with at least 1-3 attacks per day lasting about 8 weeks. The only thing that seems not to be textbook is that every night is a surprize...whether the attack is going to be mild one (less than say a K5 or 6) or a whopper of an attak like tonight (K8-9). Then I go through a PF period of 1 - 1 1/2 years. Went through the testing with the GP. then to ENT who then told me it was CH (after 3 years)...tried narcs, antinfllamatories, antibiotics, decongestants...which didn't help. I was in denial..mainly cause I have bad environmental allergies and always believed they were sinus infections...except that the pain was so excruciating. Now I have come to terms with this horrible affliction..and am now in the process of finding my right mix of abruption and prevention...and am glad I found this community! Some great info to prepare me and move forward. :) |
Title: Re: New to the Forum...but not to CH Post by maalstroom on Oct 23rd, 2008 at 3:21am
Welcome Blackjack,
Don't wait on the neurologist to offer Oxygen, persist on it yourself. It is a proven method for aborting a lot of hits. In the past I tried lying down during a hit, as everybody always tells you to keep still. Unfortunately, it only worsened the hit and I would be sitting on the edge of a seat or the bed, rocking back and forth in no time. Or if it is a really nasty one, I am standing, pacing, and in a worst case scenario I am crawling on floors, sofa's..... Hope you'll be painfree soon again my friend, Pascal. |
Title: Re: New to the Forum...but not to CH Post by Skyhawk5 on Oct 24th, 2008 at 6:55am
Oxygen is the first thing I go for when I get a CH hit. Everytime. When I first heard of it from my Dr. back in 1989 I thought "How could that stop something this bad?" I'm only 33 years old I don't want to be on oxygen. People will think I'm strange or what will it do to me.
Well when it aborted a real but kicker CH for me the first time that is all it took. It IS my number 1 tool in the battle. Right now I'm in a heavy cycle and I sleep right next to my M-tank (large) with a smaller E-tank right next to it in case I run out or something happens. I take the E-tanks in the truck with me and have aborted many hits that would have meant a couple of painful hours on the roadside without them. O2 works for aprox. 70% of us and I think some those it doesn't just haven't used it properly. No I'm not an O2 salesman, but you'll take my O2 from my cold dead hands. Get some, Best wishes, Don |
Title: Re: New to the Forum...but not to CH Post by BarbaraD on Oct 24th, 2008 at 8:05am
Our O2 guru will be along soon (Batch) to explain the proper use of O2 -- some of us SWEAR by it (about 70% of us). I'm a believer.
Melatonin at bedtime... Red Bull at the onset of a hit.. Just a couple of tools. There are prevents (everyone has different ones). But O2 O2 O2.... Hugs BD |
Title: Re: New to the Forum...but not to CH Post by BlkJack-21 on Oct 25th, 2008 at 3:42pm
Thanks everyone for the ovygen info! I will definitely bring this up when I see the neuro this week. :)
BarbaraD wrote on Oct 24th, 2008 at 8:05am:
Melationin..ehh? I am assuming that you mean that it can be helpful as a sleep aid? I usually never have problems falling asleep..other than being awoken in the middle of the night w/an attack. |
Title: Re: New to the Forum...but not to CH Post by BlkJack-21 on Oct 28th, 2008 at 7:40pm
Well I just got back from the neuro..and I found the answer about the melatonin. In fact, he was the one that suggested taking it and to take it before bedtime!
So now I have my O2 tank beside my bed, imitrex in hand and will be starting my Verapamil (480mg which seems a bit high?? 240 twice a day) and medrol dosepak tomorrow. I really do appreciate everyone here and the info/support provided. It really did help me when talking with my doctor...being prepared and informed really made the difference! |
Title: Re: New to the Forum...but not to CH Post by thebbz on Oct 28th, 2008 at 8:24pm Quote:
Be careful the beast will change to keep ya guessing. Good you have a treatment plan and aborts. It is nice to hear you got quick treatment. Keep up the fight. thebb Never relax ever |
Title: Re: New to the Forum...but not to CH Post by Linda_Howell on Oct 28th, 2008 at 9:16pm Quote:
Damn skippy it does. Now don't go away you hear? You're gonna need us in the weeks or days to come but it does sound to me that you have your ducks in a row. Linda |
Title: Re: New to the Forum...but not to CH Post by BlkJack-21 on Oct 28th, 2008 at 11:30pm Linda_Howell wrote on Oct 28th, 2008 at 9:16pm:
No way would I leave! I learned more here at the site and forums than anywhere else! :) I had to use the O2 for a hit earlier tonight and it killed it in minutes compared to it's usual hour+. If it wasn't for here, I would probably be still in denial. |
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