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nikasakki
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how to be sure??
« on: Apr 20th, 2004, 9:42pm » |
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hello all this is my first post
since 1991 i have been suffering from what my nuerologist says is clusters. i have had the mri with shadowing to rule out anything else(i quess) after alot of research mainly from this site i think that his diagnosis is probably correct but how can anyone be sure..i have not had these since jan of 2001 and now they are back. usually right before i go to bed, when i wake up and about 2-3 pm during the day. behind the eye stabbing pain, neck and side of my head as well. i do not get runny nose or teary eyed and have noticed that my pulse is very slow. slower them normal. they are also seeming to last alot longer this time around more like an hour to two hours. in the past only about 15 minutes to a half hour...also the pain is very intense this time around. i am not on any meds i have tried imatrex once just last week and it did nothing for me...i know it seems like i am rambling i just want to be sure that this is in fact traits of a cluster headaches.
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HypnoticFreddy
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Well welcome to the site. You posted in 1991??? The website was created by DJ in 1998 I believe (I am wise-ass sorry).
What form of Imitrex? Pill, Nasal, or injection?
Injection is the most effective form, followed by the nasal sprays. If it is indeed CHs, you do need medical treatment. The quicker you intervene, the better chance to at least TRY to stop the awful cycle. Most definetly (if it is CH) you will need a preventative medication (a combo perhaps) and an abortive (this could be oxygen, for medicine-dislikers).
As far as your symptoms, take the cluster quiz to the left. There are many headaches that are closely related to CHs.
Also, make an appt to see a Neurologist. My suggestion also is to start a headache journal. Write down the times, duration, what you did to treat it, what you ate. sleeping, etc.
Good luck and welcome.
-Scott
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Renee
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Re: how to be sure??
« Reply #2 on: Apr 20th, 2004, 11:25pm » |
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Scott,
I think nikasakki meant this is their first post EVER but they have had headaches since 1991. At least that is how I read it.
Nikasakki,
Do as Scott said...READ READ READ the links on the left, take the cluster quiz, etc.
Hopefully you don't suffer from CH but if you do, welcome to the family.
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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Charlie
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Re: how to be sure??
« Reply #3 on: Apr 21st, 2004, 2:13am » |
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Welcome aboard.
You say they wake you out of a sound sleep after a short time in bed? If so, I'm sorry to say that that's one of the surest signs of clusters. I know of no other headache that will do this.
Stick around and tell us more. You'll find some good ideas and support for dealing with this horror.
Try some vigorous exercise when getting hit. It can abort or shorten the attacks. Sleeping in a recliner will sometimes reduce the number of nightime attacks. The following link is to a technique that worked well for me:
http://www.netsync.net/~charlies/
Charlie
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pubgirl
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Hi nikkasaki
I'm a wise- ass too  . If you are episodic, you don't necessarily need preventives (sorry Scott), it really depends how long or how bad your episodes are. If they are shortish, preventives often take time to work and your cycle may end naturally before they do. If you have CH though, you must get a good abortive to stay sane e.g. Imitrex nasal or injections, or high flow rate 02.
One of the key questions with a CH diagnosis (DO do the quiz though) is how you behave during the attack. Do you lie still in the cool and dark, or do you pace around or are you restless in some way?
Also wise-ass again , sorry Charlie this time, there are other headaches that can wake you from sleep including migraine and hypnic headaches (the latter are normally much older sufferers though)
Welcome if you do have CH, you are in the best place possible for help
Wendy
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| « Last Edit: Apr 21st, 2004, 4:20am by pubgirl » |
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thomas
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If you would rather have someone hack your limbs off with a very slow chainsaw, than to have your headache pain- then you might have cluster headaches.
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manana
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Re: how to be sure??
« Reply #6 on: Apr 21st, 2004, 10:47am » |
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Quote:
"If you would rather have someone hack your limbs off with a very slow chainsaw, than to have your headache pain- then you might have cluster headaches."
Good one Thomas. I just had a total hip replacement (2nd time on same hip). In the hospital they kept asking me: "on a scale of 1 to 10 how much pain are you in?" I kept thinking of the KIP scale and strong 9's several times a day for months on end. In the hospital, even after all pain meds had worn off, there just wasn't much of a comparision between the pain of completely removing my femur, detaching all muscle, flesh, capilaries, etc., spliting the femur from top to bottom, inserting new device, and wiring it back together and the pain of CH's.[b][/b]
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nikasakki
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Re: how to be sure??
« Reply #7 on: Apr 21st, 2004, 11:43am » |
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yes my headaches started in 1991 not my first post..i took the quiz here and on ouch and on someother site and it all points to ch, my nuero said he believes this is what it is...the imitrex i took was nasal but this cycle i have noticed that my pulse is slow so if i take imitrex doesnt that slow up my heartrate as well? morning seems to be my worst time. i am woken up by slight pain which turns into a nightmare within ten minutes this is like this for an hour or so, yes i am pacing and moving about to try and get my mind off of it but it does not really help. this morning i got up at 5.30 am till about 7.00 am i had the headaches it went away and then came back at 8.00am till around 9.30 that was the first time i had back to back has anyone had that happen,, also like even as i am typing this i can still feel a slight pain in the backround like the headache itself is resting untill around 3pm when it comes back hard..does that make sense?
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joesf
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Re: how to be sure??
« Reply #8 on: Apr 21st, 2004, 12:10pm » |
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Yes it makes sense. This is cluster behaviour. Mine operate the same way. Get an O2 bottle it will help you.
Joe
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JDH
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Re: how to be sure??
« Reply #9 on: Apr 21st, 2004, 1:14pm » |
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Sorry you're not getting any relief nikasakki. Have you tried oxygen? It's helped a lot of us get through this.
on Apr 21st, 2004, 8:21am, thomas wrote:| If you would rather have someone hack your limbs off with a very slow chainsaw, than to have your headache pain- then you might have cluster headaches. |
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That's good Thomas.
Maybe you should do a whole Jeff Foxworthy routine about CH's
Jim
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thomas
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on Apr 21st, 2004, 1:14pm, JDH wrote:
That's good Thomas.
Maybe you should do a whole Jeff Foxworthy routine about CH's
Jim
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Ok Jim, I'll see what my creative genius can come up with. This could be good for a laugh.
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JDH
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Re: how to be sure??
« Reply #11 on: Apr 21st, 2004, 2:14pm » |
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on Apr 21st, 2004, 1:26pm, thomas wrote:
Ok Jim, I'll see what my creative genius can come up with. This could be good for a laugh. |
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Maybe something along the lines of:
If you've ever put your head through a wall, then you might be a clusterhead.
If you've ever held a 3/8 drill bit to your head thinking a hole would let out the pain, then you might be a clusterhead.
If you're buying Imitrex in gallon jars, then you might be a clusterhead.
If you've ever looked into the mirror because you thought you could actually see the pain, then you might be a clusterhead.
Jim
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9-11-01, to remember is to honor.
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Re: how to be sure??
« Reply #12 on: Apr 22nd, 2004, 12:25am » |
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Imitrex pills/ nasal spray won't help me at all The injections are my only relief.
I don't believe that Imitrex will slow down your heart. It may RAISE your BP if anything.
Goodluck with finding some relief
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nikasakki
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Re: how to be sure??
« Reply #13 on: Apr 22nd, 2004, 9:53pm » |
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what about the pulse rate it only happens in the mornings but like this morning i had a horrible hour in a half attack and my pulse was almost non existant verryyyy slooowww i kind of paniced until i regained control of myself...is it just me that might be making this happen??(me panicing i mean)
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HypnoticFreddy
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I am not sure about the pulse rate slowing. I would think it would be going pretty strong during an attack. I have never measured mine. Not sure if I have heard that. But really you oughta see a doctor as soon as possible friend. I could also see people, especially before they are diagnosed, having anxiety, and panic attacks. I know it was one hell of a freakish summer in '99 when I was first getting hit. Try to breath, and focus on breathing normally. This can be something other than CHs. See a Doctor soon.
-Scott
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nikasakki
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Re: how to be sure??
« Reply #15 on: Apr 23rd, 2004, 10:24am » |
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well during my last episodes two years ago i saw a nuerologist and he said it was clusters,,back in98 i had a mri done to see if it was something other and nothing came up..i also go to get physicals every six months and my blood work always comes up fine...what else could it be...?
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ExplodingEyeBall
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Re: how to be sure??
« Reply #16 on: Apr 23rd, 2004, 2:21pm » |
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I sometimes wonder if I'm actually suffering from clusters also. Sometimes, I'll go a long time with no HAs and then suddenly, here they are. I have gone to the doc several times to get checked out and see if I had a sinus infection.
Even now, I'm not positive. I have been having HAs again now for the last 3-4 weeks but they are so unpredictable that I don't know what to think. I am not haveing as many this time but the night time ones that wake me up are stronger than any I have had yet. It seems that as I get older, the HAs hurt more.
I would have to go with Charlie's words, which my Neuro told me almost exactly word for word today. If they wake you from a sound sleep in the middle of the night, they are almost definitely Clusters.
I hope you find something that works for you.
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Re: how to be sure??
« Reply #17 on: Apr 23rd, 2004, 5:43pm » |
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Never heard of a slowed heartrate being a symptom of clusters, unless your on some type of med causing it like Verapamil.
Clusters are very unpredictable. They usually come in groups or 'clusters' of headaches lasting weeks, months, or even years for chronics. They can happen anytime, anywhere. They can go away for weeks, months, or even years. One thing about Clusters, they are extremely painful ... like no other pain. They usually wake up suffers about an hour or so after falling asleep. Clusterheads often have a very difficult time with sleep.
If you'd rather break your leg everyday than have a headache, than it's probably clusters that you have !
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Prense
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Re: how to be sure??
« Reply #18 on: Apr 23rd, 2004, 6:40pm » |
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I have had many days of back-to-back attacks.
I don't think I'd worry so much about your pulse than your BP. If anything, imitrex will probably increase your pulse, at least briefly. The hazard associated with taking trex is cardio risk and elevated BP. If your BP is low, then you may not be able to take some of the CCB preventatives.
None of us here can say one way or the other if you have CH. All of our responses are based on our own experiences, which varies immensely between cluster heads.
There are some "typical" traits of CH. Waking from a sound sleep in intense pain at or about the same time every night, pain is unilateral, drooping eyelid, runny/congested nostril, runny eye, duration < 3 hours... I actually run a slight fever during attacks.
The cluster quiz is tailored around some of those typical traits. Your doc (hopefully a neuro at least) is the diagnosing expert. There are some GPs out and about that are educated in this realm though.
As previously stated, imitrex injections are FAST if they are going to work for you.
Best wishes!
Chris
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nikasakki
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Re: how to be sure??
« Reply #19 on: Apr 23rd, 2004, 10:35pm » |
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well like i said my neuro said that it was clusters so i quess i will have to face the facts i was just uncertain in my own head. yes the past few nights have been hell, and i have been thru this for 13 years now on and off it has just been awile since my last cycle(2 years now). is there any reason to get another mri done?(i know this is a question for my neuro but just looking for advice)if the last one showed up fine? i have to say that it is relaxing to have this website to go to. im on it every day now almost all day just reading, thanks in advance to all of you..anyone here from new york area?? one more thing..has anyone tried acupuncture iwas told that it might help
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| « Last Edit: Apr 23rd, 2004, 10:38pm by nikasakki » |
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pubgirl
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Acupuncture?
If money is no object, and you don't mind it not working at all (which for most people it doesn't)
Wendy
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