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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >>  Here I Go Again
        
(Message started by: MakeItStop on Apr 5^th, 2006, 4:10pm)

Title: Here I Go Again
Post by MakeItStop on Apr 5^th, 2006, 4:10pm

I've had this demon living in my skull for about 6 years now, they started when I was 22. The first time I this wonderful visitor reared its head, I thought I was going to lose mine in a violent cheap special effects explosion. It felt as though there was something living inside my brain trying to get out, punching and kicking at my temple, eye and base of my skull on the left side of my head. I looked in the mirror to see if I could notice a throbbing, and I hardly recognized the man I saw. I looked as if I had been afflicted with Bell's Palsy, the flesh seemed to hand from the left side of my face. My eye was so full of tears I could hardly see from it. I was writhing in unbearable pain for what seemed like hours, wonering what the hell was causing this. I had made no mention of this to my wife, as she was late in the third trimester with our first child and had enough on her plate. This nightly hell continued for several weeks, until our son was born. His wimpers every two hours replaced the pain, and I was relieved. The next bout came a couple months later and lasted for about 2 months this time. Always waking me up 2-3 hours after I had gone to sleep, and the pain was even more intense than before, I suffered through this round, wanting to sleep with my head in a vice so when the pain came, I could tighten it quickly. My wife bacame aware of them one night as I was whimpering and writhing in pain and muttering "Oww" in time with the pounding in my head. These attacks have continued for the past several years, several times a day for months, then nothing for weeks or months at a time. I sought the help of neurologists to no avail, nothing seems to work. I been dragged to the ER several times and doped up on Demarol. I can't be sure if it's the drugs or the ammount of time that passes that rids me of the pain. Recently the pain has started again, but due to a medication I am taking for Anxiety and Depression, they hit shortly after I wake in the morning, causing such intense and excruciating pain that I pass out from the pain and wake several hours later. I've read that this condition may be heriditary, and it makes me fear for my children. To this point I've been able to hide my attacks from the younger ones by hiding in another room and locking the door. There needs to be more research done for treatment and prevention. Hopefully my children will not have to suffer the way I do.

Title: Re: Here I Go Again
Post by Richr8 on Apr 5^th, 2006, 4:37pm

Sorry you had to find us, but glad that you did. You need to find a good neurologist that is familiar with CH. I did not read anywhere in your post that makes it sound like you are being properly treated. Demarol is not used for CH.
As you probably realize you have found the most comprehensive site there is that deals with CH. Read all that you can and if you don't find what you are looking for, just ask. There are many knowledgeable and helpful folks here that are always willing to jump in with their own experiences and expertise.
Since you also did not mention Oxygen in your post, I would suggest that you read up on it as it is a primary abortive for many folks here that is very effective and has few side effects.

pf wishes,

Rich

Title: Re: Here I Go Again
Post by Guiseppi on Apr 5^th, 2006, 5:14pm

What he said!! Read all the links on the left, knowledge is your freind.

Now, more importantly, you need to understand there is no cure for this. Nothing you can take will "make it go away." You will use "abortives" to stop an attack, and hopefully you will find a "preventative" that will give you some relief while on cycle. From now on you're in charge of managing this thing. You have to aggressively read up on this site, then armed with the information from here, educate your doctor. So sit down, get comfy, start reading and ask lots of questions on this board, you'll be amazed at the sheer volume of information some people on this site possess.

Welcome to the club, I hope you find something here to help you, no one should have to "grin and bear" the pain of these things.

Guiseppi

Title: Re: Here I Go Again
Post by Skyhawk5 on Apr 5^th, 2006, 8:59pm

One good word is that it is rare to find another family member that suffers CH. I worried about this too. To me one of the worst things about CH is what it can take from our family members not just ourselves. Hang in there. Skyhawk5, Don

Title: Re: Here I Go Again
Post by TxBasslady on Apr 5^th, 2006, 11:36pm

Sorry to say....but we have several sufferers here whose children suffer with CH.

The youngest I know of is LeLimey's son, Jasper. He's only 4....only 4 years old...and Jasper has CH.

It's bad enough that as adults we suffer....but not acceptable that an innocent child should go through this pain. :'(

Jean

Title: Re: Here I Go Again
Post by MakeItStop on Apr 6^th, 2006, 6:04am

I've been under the care of a neuroligist in every town I've lived in, been prescribed every Triptan I know of for aborting, gotta say the Maxalt disolving tabs are kinda odd, (Timothy Leary would be proud) and tried both Verapamil and Topamax for prevention. The local hospital will shoot anyone up with Demarol who is in pain. O2 is the only thing I think I have left to try, maybe the tank would be heavy enough to put on my skull. There is a Chi point where the thumb meets the palm that I have used successfully in the past for aborts. However it only works about a third of the time. Luckly the only time my boys wake at night is with "Growing pains" in their knees and ankles. I would lose my mind if my 5 year old (my oldest) got these damn things.

Title: Re: Here I Go Again
Post by seasonalboomer on Apr 6^th, 2006, 8:03am

on 04/06/06 at 06:04:18, MakeItStop wrote:

I would lose my mind if my 5 year old (my oldest) got these damn things.

As an adult son of a Clusterhead who inherited CH you should accept that it is possible. No, it's not very nice to think about but it could happen. So, in light of this possibility it would be your job to learn EVERYTHING there is to know about CH. You've railed off a list of medications that you have tried but also noted that you haven't tried O2. Get the O2. It changed my life.

Another important aspect in the process is looking at what you are doing in your life that helps or hinders your CH management. When in cycle do you get proper rest? Do you know what your environmental triggers are? Alcohol? Certain foods or aromas? This can be critical for some of us. For me, as an example, I tend to get 1-2 hits per day when in cycle, and the cycle lasts four weeks. Playing with the numbers that 28-56 hits per cycle. When I cut out all alcohol use in cycle that eliminated, say 5-6 hits -- or 10-20% of all my hits in a cycle with one decision. The Oxygen then has a batting average of .666 in killing hits dead in their tracks. That leaves, at the low-end, only 5 hits, or at the high end 20 hits that I need to escalate to another abortive method.

Looking at CH management methodically can help you deal with it. There's no silver bullet- there are just tools to help us manage. Some work today and won't work tomorrow, just as the reverse may be true.

Yeah, these things are a drag and are life affecting. But as many, many say here, "life is lived between the hits". I don't blame my Dad for me having CH. I got a great life and I love my Dad. CH is what it is and in the end has contributed to me being the kind of person I am (which most days is a pretty good guy).

Scott

Title: Re: Here I Go Again
Post by lmarkins on Apr 26^th, 2006, 8:58pm

Ken,
I am sorry you are dealing with this issue. I am a lifetime sufferer of CH. I can still remember having these long before I started elementary school and I'm 46. My mother said as an infant, i would be happy one second and then out of nowhere just yelling and screaming and thrashing, so I'm sure I suffered as a baby as well. My sisters both suffer from migraines but not clusters. I have lost countless jobs, friends, and even loved ones have left me because of the beast. Last year I discovered this site and what a blessing it is to me. O2 is my remedy of choice and is the only thing that has ever worked for me. I hope you find your answers here.
gl,
lee