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Topic: Don't Know What I Have? (Read 365 times) |
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timebandit
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i feel your pain
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Don't Know What I Have?
« on: Oct 24th, 2003, 2:35pm » |
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I stumbled onto to this site by trying to find out more about my headaches which I thought were migraines. I usually get them around three oclock in the morning, sometimes like clockwork. I go the bathroom asap and look for the heavy duty meds like tylenol with codine or percocet. Some times it seems to help within 10 to 20 mins but other times longer or maybe it just seems longer. But the pain I feel is exactly what people say that describe cluster headaches. It is impossible to lay down because the pain becomes even greater. My eyeballs feel like they are going to explode. I never paid attention to which side or where exactly the pain was. I leave the bedroom as to not wake my wife because I know there is nothing she can do for me and because I don't want to wake her with my moaning and "dancing" in excruciating pain. I pace aimlessly, pulling my hair and pushing in on my eyeballs. My bad headaches are around three oclock in the morning, sometimes like clockwork. But I can them anytime outside of the normal cluster headache cycle. I found one interesting technique the reduces the pain by around 30%. As I am pacing, I roll my head back as far as I can and then I open my mouth wide. Sometimes I do this until the narcotics kick in. The pain can be so intense that death does not seen like that bad of of thing which really scares me. I am afraid that one day I will do to much medication. The only thing that saves me is i know eventually it will stop...but two hours can seem like an eternity.
The thing that really makes me wonder if these are cluster headaches is that I can usually control them if I take Fioricet or Esgic at the first sign of the headache getting worse. For example, right now i have a low level headache. I will first take one or two aspirins and see if it subsides. If it doesn't I go straight to the Fioricet or Esgic . Sometimes if I don't take it soon enough I will turn into one of those cluster pain type headaches. So, the question to anyone is...What the HELL kind of headache do I have? Can migraines turn into clusters? Or yeah, I have to take Fioricet several days in a row to prevent having more. The problem with getting them when i am sleeping is that i can't do anything to control it ahead of time.
Imitrex tablet does not work at all.
Thanks to anyone who can explain my headaches.
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| « Last Edit: Oct 24th, 2003, 2:43pm by timebandit » |
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Virginia
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Re: Don't Know What I Have?
« Reply #1 on: Oct 24th, 2003, 4:36pm » |
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timebandit,
Sorry to hear that you are suffering. the fact that you WAKE UP at 3 am with the headache makes it sound like it is a cluster. but to be sure, take the quiz on the left and see a neurologist to get all the tests (mri, catscan) to rule out everything else.
Keep reading! (and pray that it is NOT clusters). 
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The Clusterhead formerly known as 9erfan.
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Prense
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Re: Don't Know What I Have?
« Reply #2 on: Oct 24th, 2003, 6:20pm » |
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on Oct 24th, 2003, 2:35pm, timebandit wrote:| It is impossible to lay down because the pain becomes even greater. My eyeballs feel like they are going to explode. I never paid attention to which side or where exactly the pain was. |
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This part really doesn't sound like CH to me... IMO, you damn sure know what side the pain is on with CH...there is no doubts.
There are other ailments that have cluster-like symptoms. Some can be life-threatening. My advice would be to get to a neuro, get a CT, MRI and see what the diagnosis is. Narcs normally do little to nothing for CH. For me, they do nothing.
When I'm getting hit hard, I cannot lay down...not because the pain gets worse, but because the pain is already excrutiating.
My 
Chris
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Bob_Johnson
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Re: Don't Know What I Have?
« Reply #3 on: Oct 24th, 2003, 6:29pm » |
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This is a place to get ideas--NOT a diagnosis. Since you do not write about seeing a physician, that is the place to begin. It's correct that severe headaches can be symptoms of many other disorders and so you must identify the source of the pain, not just treat the pain.
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Bob Johnson
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LasVegas
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Re: Don't Know What I Have?
« Reply #4 on: Oct 24th, 2003, 9:58pm » |
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Sorry to hear about your pain. After 22 years of many different types of doctor visits and medications, I found this site and self-diagnosed myself. The Cluster Quizes on this site and also on the OUCH site are very helpful. Take them, print them off and bring them to your doctor. Ideally, get to a neurologist and have them check you out with some tests, certainly with some feedback regarding your situation you present to them. Read as much as you can on the message boards and archives and on the OUCH website. The most informative and updated info regarding CH's is found on this website comprised by everybody here. Diagnosing and self medicating can be very dangerous and possibly fatal. Over the counter medications often will not be effective in relief for a CH sufferer. Also, they may add to the problem by creating "rebound headaches." CH's without any doubt to anybody who truly has CH's knows what side of the head is in pain. Do you experience all of the CH symptoms? Some of them with a combo of migraine symptoms? If you take the quizes and self diagnose yourself as a CH sufferer, then not only bring the completed quizes to the doctor, but also info on abortive and preventative medications including dosages often used. Remember every person is different and what works for some, may not work at all for others. As for the Imitrex pills, they do take too long to get into the bloodstream to become effective for a CH, at least with me and they get me sick to my stomach. Ask your doctor for a script of Imitrex nasal spray or injections if you are interested in Imitrex. Imitrex is THE drug of choice around here. Oxygen is also very effective and it is harmless if used properly. But an abortive medication like Imitrex or Oxygen will only act as a band-aid for immediate relief. CH sufferers need preventative drugs as well. Read, read, read and religious or not, pray.
Also, try some of these links that may be of help...
http://www.achenet.org/articles/cluste2.php
http://www.headachesupportgroups.com/
http://www.achenet.org/articles/cluste1.php
http://www.ion.ucl.ac.uk/~headache/headache.html
Good luck and keep us updated. We are here for you if you need us and best of all we understand and can empathize.
Gregg in Las Vegas
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Wishing all a Pain Free 2008!
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timebandit
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Re: Don't Know What I Have?
« Reply #5 on: Oct 25th, 2003, 8:51am » |
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Thanks for all your advice. I did not mention in my origional post that I did see my general physical who did not seem familar with any of my symtoms but did prescribe esgic which seems to work as a preventative if I take it early enough. It worries me that over the years the frequency of my headaches has increased and the amount of medication I take has also increased. I am a private pilot who has not flown in 10 years because I am afraid that I will get a headache when I am flying. It seems to me that according to all of your replies I should see a nuerologist especially considering that I had several accidents involving head trauma when i was younger as well as a deviated septum with chronic inflamation. No matter what my problem is, I cannot imagine the pain being worse and my sympathy to everyone who experiences this. Apparently, there are many of you who go through this pain much more often than I.
Thanks,
Greg
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| « Last Edit: Oct 25th, 2003, 8:52am by timebandit » |
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r_headache
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Re: Don't Know What I Have?
« Reply #6 on: Oct 25th, 2003, 1:36pm » |
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Timebandit, I too suffered from the monster for 10 years before I found this site. The doctors would continue to say "you've got sinus problems and would give me misc drugs to fight infections, and finally give me narcotics to fight the pain. One problem with these doctors is for a cluster headache suffer, narcotics can cause rebound HA and just continue the cycle. I found this site and said "ah-ha!" I went to my doctor and said "I think this is what I’ve got" (amazing I was the one and not the doctor who figured it out). He sent me to a nero and she said "yep, it looks like you have CH." Just in case, I had the CAT and MRI to rule out everything else. Once that had been done, she gave me verap and Frova tablets (close to Imatrex) to take daily, and then the Imatrex injectors to kill the monster should it get beyond the preventives. I'm happy to say with the correct meds I’ve only had three attacks in the last year and each of them stopped within 10 minutes with the injector (btw, I hate needles - but I'm sure you understand you can overcome that very quickly when your suffering with a kip 6-10). My treatment is different from others, if you get a good nero, he/she will know of the different types of meds that could be helpful to you and will work with you to get the correct mix (if you are a cluster head). IMO, you need to get off of the narcotics and get to a nero as soon as you can. I hope this helps. Pain Free Days (PFD) for you in the future!
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LasVegas
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Re: Don't Know What I Have?
« Reply #7 on: Oct 26th, 2003, 12:40pm » |
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Interesting about your head trauma and also deviated nasal septum. I've experience head trauma and still have a deviated septum. And yes, the deviated septum is on the same side as my CH's. Some of us who suffer from CH's, whether Episodic (ECH) or Chronic (CCH) have experienced head trauma, deviated septums, but most sufferers have not. So whether this "external trauma" created the initial onset or triggered the attacks if you will, is still a debate, but unlikely. Suppose you could also check with the dentist for TMJ. Also, an ENT for nsal bone spurs. The eye dr. for associated problems, etc. But, in most likely circumstances if you truly have CH's (remember to take the quizes) then you are suffering because of the Hypothalymus Gland, Trigeminal Nerve and excessive Grey Matter in the brain. Left side, right side, NOT COMMON FOR BOTH SIDES. Whether you are right handed or left handed also doesn't matter. While you are in the "diagnosing process", stay away from any form of alcohol which is a known trigger for CH's. Good luck and keep us updated. We are here for you and I hope the previous website links I posted on this thread a few days back have been of help for you.
Gregg in Las Vegas
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timebandit
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i feel your pain
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Re: Don't Know What I Have?
« Reply #8 on: Oct 27th, 2003, 9:30am » |
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I very seldom drink alcohol because it does trigger my headaches. Many people must think I am anti-social or a recovering alcoholic but I don't really care if it reduces the chances of getting a headache.
Thanks again for the good advice.
Greg
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Cooked Brain
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a.k.a. Max Payne, YOUCH this hurts...
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Re: Don't Know What I Have?
« Reply #9 on: Oct 28th, 2003, 5:30pm » |
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sounds like bloody cluster to me... it feels the same but keep in mind that every cluster may appear different.
still see a doctor asap!
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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LasVegas
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Re: Don't Know What I Have?
« Reply #10 on: Oct 29th, 2003, 3:48pm » |
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TimeBandit,
How are you feeling? did any of the links help you understand a bit more on CH's? Let us know if we can help. You are not alone.
Gregg in Las Vegas
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Wishing all a Pain Free 2008!
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