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(Message started by: assaultme on Aug 26^th, 2007, 2:16pm)

Title: Is this "normal"
Post by assaultme on Aug 26^th, 2007, 2:16pm

I almost didn't want to take the space to start a thread on such a small topic, but I had to ask.
Does this happen to you: Under normal circumstances when a person has a regular old headache or migraine, it hits...you take pain reliever it slowly goes away and you end up taking the rest of your day kinda easy. Most of the time you are maybe a bit tired or lethargic...not really up for much activity.
Well, with this CH thing , at least for me, it hits and you think it will invariably put you out for the count, fully expecting to be worthless for the rest of the day. When it runs it's course it leaves as fast as it came and next thing you know you are outside busting up concrete, mowing the lawn or doing some other physical activity. Feel like a million bucks. I find myself going from total inactivity to very normal activities. In fact, you end up wanting to make up lost time and blast through chores like a 20 year old.
Is this unusual or what?
One thing I can say about it is that it is very motivational.
Am I weird (ok, we know I am) or is normal for CH?
Dave

Title: Re: Is this "normal"
Post by michael on Aug 26^th, 2007, 2:38pm

A CH will go as fast as it came, that is quite normal. When it hits multiple times a day it will take its toll, or when it hits during the night and makes you lose sleep.

Mike

Title: Re: Is this "normal"
Post by Jonny on Aug 26^th, 2007, 2:58pm

on 08/26/07 at 14:16:03, assaultme wrote:

Is this unusual or what?

No, once the pain is gone you are superman, nothing can touch you after the battle you just fought!

Title: Re: Is this "normal"
Post by Guiseppi on Aug 26^th, 2007, 3:57pm

I'm the same as Jonny...............in this ONE narrow area ;;D ;;D........especially if I defeat a CH with 02 I get this absolutely euphoric feeling!!!!
I'm untouchable and immortal!
Guiseppi

Title: Re: Is this "normal"
Post by Rosybabe on Aug 26^th, 2007, 5:12pm

it might be the pure O2 we inhale and the effect of the meds in our hearts give us extra adrenaline...

I am very happy when the beast is gone, why miss a minute lying down when I can go ahead and continue my life?

unless I get night hits then I am very grumpy next day because lack of sleep ...

Title: Re: Is this "normal"
Post by assaultme on Aug 26^th, 2007, 8:31pm

Ah, looks like it is similar for y'all too. Didn't think I would find this subject of CH's much fun to learn about. But I find it kinda fascinating how nerves or brain activity can work in such ways. Had 3 of them since last night. Each was progressively lesser than the previous. Maybe the imitrex pill being taken asap is doing something after all. I read about many people here having many different degrees and frequencies of these attacks. The interesting thing to me is the fact that there are some constants that are typical to most all of these attacks. To my untrained mind, I would think that would be significant as it relates to research scientists efforts to pin point the cause. I am not even aware if it is being studied at all. Another thing I find curious about it is this: When a nerve transmits pain, it is usually because it is somehow irritated or injured. It always takes time for the pain to go away, but it occurs very incrementally. Like the severe pain felt by CH, smashing your finger in a vise causes great pain. However, it does not stop after you release the pressure. It reduces, but incrementally. CH turns off like a faucet. I am not aware of any other type of pain that acts like that.
Yeah, I can hear it now...go ahead: "Your posts work like that on me Dave" [smiley=laugh.gif]
Thanks, Dave

Title: Re: Is this "normal"
Post by GrandPotentate on Aug 26^th, 2007, 11:12pm

Sometimes I'll feel some mild euphoria before the hit. Not always, but I generally get suspicious during a cycle when I start to feel great - I is like a setup for a sucker punch.

Usually, I am exhausted after a hit. But sometimes, I feel great! It is like a cleansing experience. Or maybe like puking during a hangover.

I find both the suddenness of the onset of the hit and the weird suddenness of the end extremely fascinating. The latter is something that most doctors ignore, because it doesn't fit their knowledge. I've gotten some strange looks in response to this.

Jon

Title: Re: Is this "normal"
Post by Guiseppi on Aug 26^th, 2007, 11:16pm

It's the frustrating/fascinating aspect of this condition. It morphs constantly, seems to affect everyone diferently, and it's amazing how one med that's the magic bullet for one person, is worthless for another!! Nothing is 100%, it seems nothng that works, works forever. Keep lots of options in your war bag and always be ready to do battle!!!

Guiseppi

Title: Re: Is this "normal"
Post by assaultme on Aug 26^th, 2007, 11:43pm

Hey Guiseppi wassup?
Yup, thanks to y'all I got the war bag filling up. Did all the reading I could tonight as prescribed by members here.
I must say that this Ch thing is probably the most well...I don't know...humbling or complicated or confusing thing I have ever looked into. I mean, Docs don't even know? It morphs? multiple treatments? The sheer amount of learning required is staggering !!! But I ain't ascareed :)
It is a really kool challenge for me. I'm not a big touchy feely kinda guy, but tonight I saw something that made me physically ill. It was a video of a person having this horrible attack. My God, It scared the BJesus out of me.
Before I came to this site, I never had any real health problem. You know these days everyone is a "victim" and wants the world to carry them. When I got this Ch thing and came here...man !!! my eyes were opened....and I don't like what I see. People actually live with some crazy medical thing that isn't even getting researched enough to solve !!! Then I see all these dedicated Docs and individuals busting ass to help others. Yet, the problem goes on. Insurance companies refusing meds cause they can get away with it. Mushrooms proven to help but we're so puritanical about drugs it is just better to let people suffer. I have to actually become a semi-expert someday on this subject just to solve or control a problem. Now don't get me wrong. This isn't a complaint post. Rather it is just me thinking about how important this issue is to people. How many other important medical things am I unaware of??? But on a positive note, it won't be long and I will have the tools I need to get my act together. Have a great week all.
Cheers, Dave

Title: Re: Is this "normal"
Post by assaultme on Aug 26^th, 2007, 11:57pm

My God, I hate the "newbie" thing. Some of the seniors here are gonna give me a cyber-wedgie or toilet swirlee [smiley=laugh.gif]

Title: Re: Is this "normal"
Post by MvT on Aug 27^th, 2007, 4:13am

on 08/26/07 at 23:43:39, assaultme wrote:

you mean the video on youtube?
http://www.youtube.com/watch?v=LAf_QFmTPkw
http://www.youtube.com/watch?v=lJxB_8G-73g
http://www.youtube.com/watch?v=vqXQ_coJy4I
http://www.youtube.com/watch?v=eJFLwYZO7iE
http://www.youtube.com/watch?v=BEKdACSjOJ4

Title: Re: Is this "normal"
Post by Wayne on Aug 27^th, 2007, 4:13am

Hey Dave

Firstly your original question, yup I also get an energy rush after beating/surviving a hit, although I have put it down to, at least in part, the shear volume of caffiene in my system at that time (Redbull, caffergot etc). Interesting that it happens to other folk too.

Secondly, and also true, this appears to be one of the few ailments today where, to a large extent, your success depends on yourself and the knowledge you gather. the more you know the more you can try and the more in control you will feel. For me a simple thing like Redbull has changed my outlook completely like O2 has for others, now there is no way that any doctor would have told me about that. Without this site I would still be living in a world of uncertainty and horror, now life is good again simply cos I have at least a rudimentary understanding of whats happening to me and I know how to fight it.

Good luck, good to have you here.

Title: Re: Is this "normal"
Post by MvT on Aug 27^th, 2007, 4:55am

on 08/27/07 at 04:13:53, Wayne wrote:

just a question have you tried bawls or rockstar?? I'm not a big fan of redbull or sobe but I will drink them

Title: Re: Is this "normal"
Post by Wayne on Aug 27^th, 2007, 6:20am

Never tried Bawls or Rockstar but USN works. In fact any Energy drink containing Caffiene and Taurine is ok, but don't buy anything that doesn't contain those 2 all important ingredients.

Title: Re: Is this "normal"
Post by thomas on Aug 27^th, 2007, 4:03pm

If I'm only getting a couple of hits a day, I'm usually pretty good afterwards, but if I'm "peaking" 6-9 hits a day, I'm pretty worn down after struggling all day with it. (It takes a lot of energy to thrash my fat ass around and scream and cry and what not.)

Title: Re: Is this "normal"
Post by Bob_Johnson on Aug 27^th, 2007, 4:14pm

Nope!, I'm with you and it's why I love using olanzapine. When it kicks in, I experience it like a light switch being flipped--the pain stops and a clear head just that rapidly!!!

Title: Re: Is this "normal"
Post by assaultme on Aug 27^th, 2007, 5:08pm

Thanks Wayne.
Have tried nothing like those drinks yet. I just started here and have done as much reading as I can. I am going to try all the caffeine drinks I can. Today so far, everythings kool beans. Dumped a gallon of coffee down my yap.
MvT:
UGH, yes the second video looks like the same man I saw, but he was sitting on a bed and audibly crying out. . The video frightened me, but I'm doing great to ignore fear of attack. The first few weeks I had a fear of attack. Now I am my normal self....silly as hell. I don't let it rule me any more than I absolutely have to. Today at work was attack free and me & my work partners did what we usually do....that is act like a bunch of dang clowns. I would say thank y'all again, but I think I say it better by guaranteeing that I have been doing as I am told here. That is to study!!!!
Cheers, Dave

Title: Re: Is this "normal"
Post by assaultme on Aug 28^th, 2007, 7:51pm

I would like to add an update as to a question I was asked earlier by a fellow member-ette:)
I was asked who my Docs. were and I named them. I think I made it clear that we were in the very beginning process of treatment and the confusion and uncertainty between me & my Docs. was something we would have to wait till today to resolve. The purpose of the question and answer was simply to get me educated and some extra help. I think it is clear enough, but misunderstandings are possible even with good intent. Had I not found a resolution, I would have aired my complaint to the source....not bashed someone who cant even defend them self...that is wrong. So, now that that is clear, I would like to thank My Docs. Schlagel & Ahmed were fantastic. I told Doc. Ahmed I would like an oxygen bottle, Imitrex injectables and a long term of his choice (provided he agreed) and he didn't hesitate for one second. The reason I add this to the discussion is that I owe them both a debt of gratitude and think if you discuss specific details, you should have the courtesy to give those being discussed their due and reputation props.
Thanks for allowing me this. Also, another awesome attack free day....sucker punch coming later
laugh
Cheers, Dave

Title: Re: Is this "normal"
Post by Jonny on Aug 28^th, 2007, 9:50pm

on 08/28/07 at 19:51:00, assaultme wrote:

I would like to add an update as to a question I was asked earlier by a fellow member-ette:)

Who asked it?.....much to much drama, who asked it?

Title: Re: Is this "normal"
Post by assaultme on Aug 28^th, 2007, 10:00pm

Jonny:
My new friend Purpleydog asked me. Like yourself, she has been a big help.
BTW, I got the O2 tank coming tomorrow for work and I have a big industrial S type tank already in my shop that I intend to get filled. Gonna do what you said and set the regulator up along with my new non-rebreather mask.
Just a little while ago I was playing my drums and got an attack. Did the Imitrex injection for the first time. IT WORKED in about 10 minutes.!!!!!!!!!!!
I cant say how encouraged this news is to me !!! Buffered by the fact that it is only the first time, but I think I'll go finish The Beatles tune I was playing. Don't wanna dis Ringo [smiley=laugh.gif]
Thank you.
Cheers, Dave

Title: Re: Is this "normal"
Post by HeadhurtinMama on Aug 30^th, 2007, 4:11pm

on 08/28/07 at 21:50:30, Jonny wrote:

Who asked it?.....much to much drama, who asked it?

I asked as well, as I have seen another neuro in Dave's hometown. I didn't care for him and he misdiagnosed me. I was also offering up my awesome neuro's name since she is very great with treating CH.

Title: Re: Is this "normal"
Post by Saffy on Sep 5^th, 2007, 6:51am

I've got to admit I get completely wiped out when I have had weeks of "waking me up" CH. The first few weeks aren't so bad bad but when 4 or 5 bad weeks happen as they do one on top of the other I get tired, crotchety and and have to work very hard on the over whelming to desire to be NOT VERY NICE! >:( Ggrrr

Saffy

Title: Re: Is this "normal"
Post by LeLimey on Sep 5^th, 2007, 3:00pm

Hi Saffy
You might want to look into posts on Melatonin here on this site. Alot of people have used it with great effect for night time hits - hope that helps!
Helen

Title: Re: Is this "normal"
Post by MvT on Sep 8^th, 2007, 10:21pm

on 08/27/07 at 17:08:13, assaultme wrote:

MvT:UGH, yes the second video looks like the same man I saw, but he was sitting on a bed and audibly crying out. . The video frightened me, but I'm doing great to ignore fear of attack. The first few weeks I had a fear of attack.

This one?
http://www.youtube.com/watch?v=e7g_FgFWTMs

I have been there....not the runny nose tho....still hard to watch glad he got oxygen

Title: Re: Is this "normal"
Post by assaultme on Sep 9^th, 2007, 10:19am

MvT

That one is just about as bad as the one I saw. The one I saw had some guy helping the sufferer keep his mask on....like holding him still or something.

I feel real bad for those here who can get no relief. Before I got help, I think maybe I hit a kip 9 at worst. It was frightening for me mostly because I had no idea why it was happening or that there was something I could do about it.

I about feel guilty for the success I have had with it. The Docs. gave me drugs that have got it under really good control. Haven't had an attack in 6 days now !!! When I do, 02 or Imitrex shots always seem to work. Now I don't know how long my good luck will hold out, but I don't worry about that. I can do nothing about it. Thing is, I hear others come on here and talk about not being able to go on much longer.
It really bothers me that they have such bad luck and no relief. It is truly stupid to live your life worrying about things you can do nothing about. But sometimes those other people's problem creeps into my mind and it bothers me to know they are suffering and their life is being destroyed.

If there is one thing I have learned, it is humility. After seeing the bad luck of others, I feel stupid for whining about getting a nail in my hi-performance tires. Oh my God !!! Thats gonna cost me 200 bucks !!!! Well, boo hoo, better than a nail in your left eye socket !!!

Cheers, Dave

Title: Re: Is this "normal"
Post by MvT on Sep 9^th, 2007, 10:40pm

on 09/09/07 at 10:19:24, assaultme wrote:

MvT
If there is one thing I have learned, it is humility. After seeing the bad luck of others, I feel stupid for whining about getting a nail in my hi-performance tires. Oh my God !!! Thats gonna cost me 200 bucks !!!! Well, boo hoo, better than a nail in your left eye socket !!!

Cheers, Dave

well having something break or damaged is annoying you get over it your health is more important....

Title: Re: Is this "normal"
Post by Will_Williams on Sep 26^th, 2007, 5:17am

That's the norm! I actually have 3 second intervals during my clusters sometimes where the cluster completely goes away for 3 seconds and comes right back. Everytime it goes away I can't help but laugh and get excited about the brief relief! <<< That's weird!

Title: Re: Is this "normal"
Post by ClusterChuck on Sep 27^th, 2007, 1:23pm

on 08/26/07 at 23:43:39, assaultme wrote:

tonight I saw something that made me physically ill. It was a video of a person having this horrible attack. My God, It scared the BJesus out of me.

Ummm ... That might have been me that you watched. Was this it?

http://www.youtube.com/watch?v=v9FMaozTgTM

If so, that IS me, and my buddy Luke who is trying his damnest to keep me from pulling my hair out, and banging my head on the floor. It was filmed at the Nashville convention, by Justin Ott. He is working on a documentary about clusters.

Chuck

Title: Re: Is this "normal"
Post by assaultme on Sep 29^th, 2007, 9:20pm

Yeah Chuck. It was only after I met you that I realized it was you. I saw Tony's video too. Not quite as bad...but bad to see my friends in such agony!!

When I first got Ch, I wanted to show my Mom exactly what I was talking about. I ended up not showing her your video. I thought it would be too hard for her to watch.

But hey, I'm glad you made the video. It is good educational stuff for those who want to understand.
Cheers, Dave