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shineon1844
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New to this
« on: Nov 19th, 2003, 11:55pm » |
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I've had some bad headaches since I was in my early teens. I'm now 28, and I have had a constant blinding headache for going on 6 weeks now. Every day. Wakes me up at night. I was originally diagnosed with lyme diesease, and have been through so many specialists and tests (spinal tap, brain/spine mris, ultrasound of corroded artery...) and no doctor has suggested cluster headaches. I just found all of this information today doing a random search online. So - how do you deal with this? Typically, do you go to work every day like everything is normal? I'm going nuts at work, and I can't even describe the pain to anyone else there. I'm getting ready to take short-term disability from work because I just can't function on an organized, creative level.  Going to see my doctor tomorrow, but would rather hear from people who know.
Thanks
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| « Last Edit: Nov 19th, 2003, 11:56pm by shineon1844 » |
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TxBasslady
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Re: New to this
« Reply #1 on: Nov 20th, 2003, 12:18am » |
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Hi Shine,
Welcome to the board.
Did you take the cluster quiz, located in the links on the left? There is a ton of information on CH located in the links, and also you can learn alot from reading the posts.
You didn't mention what, if any, meds you currently take for your headaches.
If you do have CH, you have come to the right place. Lots of great support on the board, and lots of new friends can be found.
Let us know how you do at the dr tomorrow. Always someone here you can talk too. Keep us informed.
Jean
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pubgirl
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Shineon
Think the cluster quiz would be a good idea (while praying that it isn't CH as many other headache syndromes are much easier to treat.
The reason I echo the suggestion is that the duration of your headaches looks much too long for a classic CH symptom.
Let us know how you get on and how we can help
Wendy
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shineon1844
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Gunga galounga - total consciousness
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Re: New to this
« Reply #3 on: Nov 20th, 2003, 8:29am » |
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I took the quiz, and it seems I definitely have a chance to have CH, but my problem with the quiz was the word "normally". I have never experienced something this bad for this amount of time before in my life. I've had some unusual symptoms as well, like I only sweat on the right hand side of my face. It's as if someone drew a line down the middle of my nose - the right side of my face will be dripping with sweat, and the left side will be dry. From everything I've read online, doctors really don't know too much about CH at all. Thanks for helping out, and I really hope it's not CH and I don't have to come back here for questions and support, no offense intended. Thanks again.
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pubgirl
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Hey
Shineon
Keep reading. Don't disappear. I shouldn't say this really as we aren't doctors but my view is that you get a better diagnosis here than from most doctors.
I was only hoping for your sake that it wasn't CH as you will see from here, many people have the devil's own job managing it.
If it is, you couldn't be in a better place.
Have you been prescribed anything at all yet?
Wendy
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Bob_Johnson
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Re: New to this
« Reply #5 on: Nov 20th, 2003, 9:13am » |
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With such a long, complex medical history you would be well served by searching for a headache doc/clinic to pin down the diagnosis and, therefore, treatment.
As good as the information is here, it is not a substitute for a good doc.
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Bob Johnson
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pubgirl
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Bob is right of course.
Just don't want Shineon to think he can't get involved here until he gets his diagnosis.
W
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| « Last Edit: Nov 20th, 2003, 9:06pm by pubgirl » |
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ClusterChuck
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Re: New to this
« Reply #7 on: Nov 20th, 2003, 1:05pm » |
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on Nov 19th, 2003, 11:55pm, shineon1844 wrote:| I'm now 28, and I have had a constant blinding headache for going on 6 weeks now. Every day. Wakes me up at night. |
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I am VERY concerned with what you have described. You say you have had a constant headache for 6 weeks. This is not normal for cluster headaches. You also said it wakes you up every night. If it is a constant cluster headache, 99% of us CANNOT go to sleep with one. Don't get me wrong, I am not trying to harrass you, I am concerned what you have.
You have had tests in the past, maybe it is time to run some tests again. If this is new, get another MRI and CAT scan to make sure something new has not shown up.
We are questioning you so that we can give you the best advise we can. Many things that work for other type headaches do not work on cluster headaches, and things that work for cluster headaches may not work for something else.
None of us want you to have this. If you do have it, most likely you will have it for the rest of your life. We would not want ANYONE to suffer like this.
It is possible that you have cluster headaches and something else. Cluster headaches will not kill you, but if there is a tumor or something else causing these unusual symptoms, THAT may be dangerous. Please get new tests!
Do not think we are picking on your symptoms. We all are concerned about you, and want to help as much as we can.
Please keep us updated, we do care.
Chuck
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thomas
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Welcome, read all that you can and get a good doc. 
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shineon1844
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Gunga galounga - total consciousness
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Re: New to this
« Reply #9 on: Nov 20th, 2003, 5:28pm » |
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First, thanks all. I saw my doctor today and showed him eveything i had downloaded. The symptoms are the sharp headache behind the eye, just piercing, sometimes throbbing in the temples, exascerbated by coughing or bending over, facial sweat - but this is really strange - I'm only sweatting on the right side of my face. It's like someone drew a line down the middle. He sait it was a "very good chance" that they were clusters. How could neither he nor other specialists (neurologists) even have suspected it? In the past 6 weeks, I've had multiple spine MRIs (doctor suspected meningitis), brain MRIs, neck ultrasound, lumbar puncture (spinal tap), and a complete dental survey. None of them even brought it up. Even if it ends up this isn't clusters, it seems like it definitely should have mentioned at some point. So my doctor prescribed multiple medications: Prednasone, Vivactil, cardizem LA, allegra, nexium (to settle stomach problems some of the others may cause), and Maxalt. He has told me to try each one for two days each, and record feelings throughout the day. On the third day, i stop the first and start the second, and so on. I have lost some faith in the medical community at large. I've checked out all the meds prescribed on-line, but if anyone knows anything about any of them, I'd really appreciate to hear it.
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thomas
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Your story sounds much like a lot of people who where misdiagnosed early on. I went my first two cycles with no medical attention except for an er visit - got a shot of something, killed the cycle. Next time around I'm at college, get hit, can't sleep, can't go to class, can't party, go to the campus dr. She asks me all these questions - Then says "classic signs of cluster headache". I'm like what? Something that hurts this bad can't have a weak-ass name like cluster headache. But, yes She was right and here I am. I guess I'm lucky to have found her for a doc.
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Paigelle
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Chuck is so right! A cluster isn't constant, thank God. The pain is indescribable, but please make sure nothing else is going on first. I am so glad you have had all the tests you have had to rule out anything terminal.
Clusters aren't terminal, even though it might feel that way when you have one. They will make you means as a rattlesnake though. There is no sleep with one and there is no peace when you are having one. The only true peace is what you will find here with these wonderful people.
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pubgirl
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Sorry Shineon
Another question here. I know a couple of the drugs you mention but am throwing the question out to the more knowledgeable ones again.
It seems a bit odd to me to recommend that you take drugs such as steroids for two days only. How long does it take for some of these drugs to take effect, and how would you know which drug/combination/after effects was creating what feeling?
Never heard of this approach before so am questioning it.
Wendy
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shineon1844
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Gunga galounga - total consciousness
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Re: New to this
« Reply #13 on: Nov 24th, 2003, 10:38am » |
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So far the meds don't seem to be helping. Not crazy about guinea-pigging either. I also have signs that are atypical of clusters - it switches sides, and, honestly, my pain isn't as bad as I've seen most other people describe - it's just there every day (going on 7 weeks now). Curious - but has anyone else out there ever only sweatted on one side of the face?
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thomas
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Yes, the same side I get hit on. Not profusely just a light sheen.
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vig
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Re: New to this
« Reply #15 on: Nov 24th, 2003, 2:42pm » |
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on Nov 20th, 2003, 5:28pm, shineon1844 wrote:| I have lost some faith in the medical community at large. |
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understatement!
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hdbngr
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Re: New to this
« Reply #16 on: Nov 24th, 2003, 3:50pm » |
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Ummm guys.... hold up a sec...
You say it is not possible to get a "constant" headache. Unusual, certainly, but possible. There are a few chronic cluster heads that got a cluster headache years ago that literally never went away.
For them, the headache NEVER goes below a 3-4, and since they have to sleep some time, they learn to sleep with a 5-6, only waking when it cycles to an 8 or above.
Anyone who has a headache that never goes away should certainly get further testing done, but as we CH sufferers are all sort of rare birds anyway, there is no such term thing as "never.
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thomas
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I agree with hdbngr - have had constant ha's while in cycle, some lasting 72 hours. I've seen other posts saying that "Ch can't last more than a few hours." I didn't want to start and argument on who's pain is worse. You know what I mean?
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HannahFroukje
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Re: New to this
« Reply #18 on: Nov 24th, 2003, 4:32pm » |
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on Nov 24th, 2003, 10:38am, shineon1844 wrote:| Curious - but has anyone else out there ever only sweatted on one side of the face? |
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I haven't seen it. But I"ve only seen one cluster headache patient so far. And he's sweating on both sides of his head.
I would surely see a good neurologist. And personally I would try to abort the pain with imitrex first, if that is not helping at all, then there might be a chance it's not cluster headache after all. Imitrex works fast for most CH as I have understood so I would try that first, to get some sort of diagnosis. It's ture imitrex doesn't work for some CH-'s, but when it works , it works fast. If it works on you at least you'll know that it must be a migraine or CH-related thing. It's fast and reasonably safe.
Watch out with the meds PLEASE! I mean, don't just take'm because your doctor says so, unless you really trust him. Keep thinkin' yourself!!!! I don't wanna scare you but when my hubby was in hospital they just about tried any med in the book on him and almost killed him, because they obviously didn't know what they were doing. So keep thinking yourself and read as much as you can find. There's a lot of info here.
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shineon1844
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Gunga galounga - total consciousness
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Re: New to this
« Reply #19 on: Nov 24th, 2003, 4:45pm » |
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Thanks again all. So far the meds haven't worked for me(Maxalt, prednisone) and tomorrow i'm supposed to start plain old allegra. Doctor says antihistamines are excellent cure for CH. I have seen a neurologist, got another appointment with an eye-brain specialist neurologist. Funny, of the medications prescribed to me, Imitrex was not one of them. I'm just so frustrated and fed up by the whole thing. Curious, though, reading about the psilocybin... guess that's why i didn't have many episodes back in college. 
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Tiannia
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Re: New to this
« Reply #20 on: Nov 24th, 2003, 5:32pm » |
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on Nov 24th, 2003, 10:38am, shineon1844 wrote:| So far the meds don't seem to be helping. Not crazy about guinea-pigging either. I also have signs that are atypical of clusters - it switches sides, and, honestly, my pain isn't as bad as I've seen most other people describe - it's just there every day (going on 7 weeks now). Curious - but has anyone else out there ever only sweatted on one side of the face? |
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Sweetie, take a deep breathe. There are other here you get the same thing.
As far as sweats go mine is only on the left side, but that is the side that i seem to get hit on more. I'm not so sure that you are having atypical clusters, it seems that everyone's is a bit different. Unfortunatly, if you have started getting them and you are chonic then it make a lot of sense that it has been 7 weeks now, sorry to say that. Mine started in July and it was not until the middle of October that I got 12 days without them. Then they came back agaon full force. and I am still getting them now for 5 weeks currently.
As far as the pain goes, no I do not think that mine are as bad as others on this board, and for me the longer they go the more I am able to deal with them. It does not mean that they are not hitting as hard or that they have let up at all, I just and learning ways to assist with the pain (ie ice and water, etc)
Yes I do work daily, and there are many many days that I believe that I can not even think about going to work, but I have to do it. And when they hit (which for me is about 2 and 4 in the afternoon, I just try and make sure that my heaving thinking work is done by then. Every now and then one hits earlier in the day and then the rest of the day is pretty much FUBAR'ed.
A very good suggestion that was made to me was to keep a headaches journal. Write down when they hit and what you take. Write down the shadows and what you do to try and not make them hit. This will help you get a clearer idea of the timing of them.
This is a great site and a great group of pople who can help you. Ask any question and you will get an answer and usually a laugh as well.
Tiannia
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| « Last Edit: Nov 24th, 2003, 5:33pm by Tiannia » |
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pubgirl
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Shineon
Antihistamines are commonly prescribed as a migraine preventive and can be really effective for this. The results as a preventive for CH are much less convincing although some people have found they helped.
Not sure that with the cocktail you are being prescribed though you will know what works.
In addition quite a few of the preventives take a while to take effect so two days would be useless!
Wendy
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Prense
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Re: New to this
« Reply #22 on: Nov 24th, 2003, 9:40pm » |
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on Nov 24th, 2003, 4:45pm, shineon1844 wrote:| Doctor says antihistamines are excellent cure for CH. |
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Currently, there is no known cure for CH...
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BlueMeanie
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I've been reading through all your post. Still haven't determined if you have CH or not. The line straight down the middle of your head is a definate +. I don't do a lot of sweating, but you may just having panic attacks from not knowing !! It took me 5 years before I knew officially I had CH. 1st 2 yrs. with no medication. The next 8 years as a guinea pig with the pills. Sometimes I thought they worked, but never lasted. It seems like anything new stops a couple of hits, but then the beast returns. It figures out your trying to trick it. After 10 years found out O2 works. Not always for me, but at least 1/2 the time. After 15 years I found Imitrix shots. The lifesaver of all lifesavers ! I still cannot believe I went through sooo much pain when all that time I could have had Imitrex. You should try it. It may save you from going through what I went through.
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JohnM
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Re: New to this
« Reply #24 on: Nov 25th, 2003, 7:17am » |
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Shineon
You have not really answered the questions posed here to try and help you diagnose this.
1.Is the headache really CONSTANT, or does it go away and then come back later.
2.How long does the pain last during each HA.
3. How many HA per day.
If the pain comes and goes with periods of relief it could well be CH. If the pain is constant fo rdays on end it could even be migraine/cluster migraine. I get both. Let us know the answers for more help.
Regarding meds. The advice here about Imitrex/Imigran given here is really good. Get your Dr to give you an injection DURING the HA. Chances are it will kill the pain inside 10 mins. Alternatively get hin to give you a self injector pack and do it yourself. It is really easy and painless, not lick a hyperdermic syringe, it is a pen-like autoinjector. If this works you have a good basis for self treatment. Imigran seems to work well fo rboth CH and Migraine and was developed as a migraine drug.
John
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