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Cluster Headache Help and Support >> Cluster Headache Specific >> Been told they are clusters
(Message started by: Goodness on May 8th, 2008, 3:15pm)

Title: Been told they are clusters
Post by Goodness on May 8th, 2008, 3:15pm
 I am new here, and I found the site trying to find some info on Cluster Headaches.  I have had what I can only describe as the full army of hell trying to bore it's way out of the left side of my skull for the past 12 to 13 years. The headaches last for about 8 to 14 hours. they come, usually once a week, sometimes more, but never less. If I do not have one by Friday, I know my weekend will be hell.  Non-stop hell.   For the longest time, people thought I was over-reacting or just making it up.  It wasn't until I had my oldest sons bat hitting myself in the side of the head over and over and then proceeded to slam my head with the cupboards that my parents and wife realized there may be an issue. They brought me to the doctors for fear of a tumor, but nothing, then they thought migrane, but nothing. I was scared that I had the same problem as my youngest son where my spinal canal is blocked so no spinal fluid reaches the brain causing severe headaches, but nothing. I had my wife bring me to the hospital where they shot me up with Demerol, Morphine, gave me Vikatin, and Percs on several occassions and numerous other meds.  Unfortunately, none of it worked, not even the Demerol or Morphine. It starts as a stuffy nose, then I drool, then comes the pain in the left side of the face behind the eye like it is going to explode, then the bridge of the nose to behind the ear hurt with an un-describeable pain. I push on my temples, punch myself in the face, scream, squeeze, anything to take my mind off it, with no luck. The worst part is my already potent mood swings get worse.  I am in so much pain that I lash out(verbally) at anyone or anything that gets in my way. I can't go to the bathroom, not because I cannot handle it, but because my body just wont do it. I feel like I am going to die, literally. My breathing is hot, very hot. My drooling gets worse, my left nostril runs, and I cannot even think because it hurts. I feel like the devil is grabbing hold of me and making me experience hell in my head. I have, on several occasions, screamed out loud to God to make it stop and ask him why this is happening.  i have yet to get an answer. The doctors just recently told me that they strongly suspect Cluster Headaches.  All I know is that after the headaches I am so physically drained, I feel like I just had a rabid cat loose in my haed with a bull and a cannon. I cannot explain the pain to anyone, there are no words or comparisson. Without crawling into the persons head and carving WAR AND PEACE  on the inside of their skull with a hammer and chisel, they will not know.  I would not wish this on anyone. I has made it harder to be a father, husband, son, and friend. I often wonder if I am being punished for something that i did, but I would hope God would not be this cruel.  Well, that's my piece.  I had my weekly headache yesterday, so I am hopeful that I wont have another until next week. We will see.  I'm glad I'm not insane though.  Take care, and hang in there.


Title: Re: Been told they are clusters
Post by Guiseppi on May 8th, 2008, 4:00pm
Welcome to the board, danged glad you found us. It certainly sounds like you may have Cluster headaches. Have the doctors given you anything yet? As you've already found out the hard way, pain meds are ineffective against it, but there are numerous treatments to help bring you relief. Most find the best results by using a 2 pronged approach to attacking these things.

1: A good preventative medication. This is something you take regularly to help reduce both the frequency and the intensity of your attacks. I use lithium at 1200 mg a day. Other popular prevents are verapamil and topomax, many find relief by combining the lithium and verapamil.

2: A good abortive. A headache starts, now what. Your first line abortive should be oxygen, at a high flow rate, 15 lpm or better, through a non re breather mask. Nasal canulas and re breaher masks are worthless. I can abort an attack in as little as 6 minutes using only oxygen. It has been close to a miracle fix for many on the board. REALLY REAALY push your doc as some are hesitatnt to prescribe it. Read the link on the left, info you can print out on oxygen therapy to bring to your doc.

Other great abortives are imitrex injectables or nasal spray...the pills generally take to long to get into your system to help you. For now try slamming an energy drink which contains both caffeine and taurine, Monster, Rock star, etc. Many can abort or at least substantially reduce an attack using this method.

You don't have to bother trying to explain the pain to us, we've been there and totally understand. Now we have to help you avoid or eliminate the pain. You're suffering way too much considering the current available treatments out there. Welcome home.


Title: Re: Been told they are clusters
Post by Bob_Johnson on May 8th, 2008, 4:28pm
Explore the articles in the OUCH site (left) and/or get one of these books. These are the most organized and comphrensive  way to learn about Clusters.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: Been told they are clusters
Post by Bob P on May 8th, 2008, 6:03pm
Is your doc a neurologist familiar with clusters?  8 to 14 hours in duration is pretty unusual for clusters.  They are more commonly 30 to 90 minutes.

Title: Re: Been told they are clusters
Post by Jonny on May 8th, 2008, 9:51pm

on 05/08/08 at 18:03:00, Bob P wrote:
Is your doc a neurologist familiar with clusters? 8 to 14 hours in duration is pretty unusual for clusters. They are more commonly 30 to 90 minutes.

You aint shittin! ;;D

Title: Re: Been told they are clusters
Post by BarbaraD on May 9th, 2008, 6:47am
Red Bull at the very beginning of a hit helps a LOT of us and O2 immediately at the high rate with a non-rebreather mask.

Talk to your doc about PREVENTS -- read the med page on the left. There are several good ones available - verap, lithium, topamax, etc.

Imitrex or ergotomine for ABORTS works for most of us (pain meds are mostly useless and can cause rebounds).

Sorry you had to find us, but this is the place to be for CH. We DO understand the pain cause we suffer it also so you're NOT alone. Snotty noses, droopy eyes, spikes in the head -- you do seem to bear a family resemblence.  :)

Get an MRI to rule out other things, but INSIST on O2 (with a regulator that goes to at least 15 liters per minute) and a NON-REBREATHER mask. (that's important!). That works wonders for about 70% of us.

Hugs BD

Title: Re: Been told they are clusters
Post by Giovanni on May 9th, 2008, 7:21am
A single cluster headache of 8 to 14 hours for most of us would mean death or close to it.  The longest I've ever experienced is maybe 2 hours, but other have had ones in the several hours + range.   Now, one headache followed by another, then another, then another happens. Perhaps you have a combination of headache types going on at the same time?

Anyway, I certainly hope you find relief.

Best wishes,


Title: Re: Been told they are clusters
Post by Goodness on May 9th, 2008, 11:03pm
Had another one today.  That really sucked.  That is the first time in a long time I have had more than 1 per week. This one today, I don't know what brought it on.  All I know is that I wanted to push my thumbs all the way to the back of my kull thru my eye sockets and then drill a whole into my head.  Is it just me or does it seem like if you were to drill a hole into your head or something the pessure may subside.  The thought has crossed my mind...many times. It hurt so damn bad. They seem to be getting worse and worse as time goes on.  Well, take care, and stay strong.


Title: Re: Been told they are clusters
Post by TrippnMI on May 10th, 2008, 12:16am
It does seem like it getting worse sometimes, I've had them since 1991, except for 2005 for no apparent reason I didn't have any for a whole year, I thought I was cured, LOL not. I've found that having more then one primary preventitive medication on hand is a good idea in case one of them starts to cause an episode instead of prevent it. I've been taking Esgic/Fioricet as primary with Indocin as backup for about 2 years and still get episodes but usually not over a level 2 or 3, I tried imitrex but it replaces the headache with a sore throat so I don't use it any more. I also found that for me thunderstorms or rapid baromic pressure changes can bring them on. Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
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