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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> never get woken up so maybe not cluster?
        
(Message started by: Radha on Apr 9^th, 2006, 10:32pm)

Title: never get woken up so maybe not cluster?
Post by Radha on Apr 9^th, 2006, 10:32pm

i was wondering since i never actually get woken up from sleep with a headache, but do wake up many times with a headache, does that mean that there is no chance it could be a cluster? thanks for any info,
radha

Title: Re: never get woken up so maybe not cluster?
Post by BobG on Apr 9^th, 2006, 11:13pm

Your first sentence is a little confusing.
I take it that you have never been brought out of sleep by a pain so bad that it woke you up. But, you have had a headache when when you woke up naturally. Have I got it right?

Either way it does not mean you are or are not a clusterhead. Some people get all their hits during sleep. Others never get them at that time.

If you get a cluster attack during sleep I guarantee it will wake you.

The headaches you have when you wake naturally is probably, but not limited to, from (maybe) your sleeping position, too much to drink or the wrong food the night before, stress from the day before playing out in your dreams, you wife’s snoring. Hell, I don't know.

Have you taken the cluster quiz on the left side of the screen? During your headaches do you need to lay down? Where is the pain located, front of the head, back, one side, both sides?

Let us know please. We are not doctors but help is available here.

Title: Re: never get woken up so maybe not cluster?
Post by Karla on Apr 10^th, 2006, 1:29am

Hi I am a chronic clusterhead. Before I found a preventative that works to keep the ha away I was getting hit 8x/day every day for years. The headaches lasted 1 1/2 hrs each. This would start with my first ha shortly after waking up with my last one at around 2am. Then after my last dance I would fall asleep exhausted. I have been diagnosed by 4 different neuros as having ch. So yes it is possible. Can you tell us more about your has like the questions BobG was asking. It would help us to help you more.

Title: Re: never get woken up so maybe not cluster?
Post by burnt-toast on Apr 10^th, 2006, 4:53am

Being awakend from sleep is one of the common symptoms used in providing a final diagnosis for CH - but not the only symptom.

Take the cluster quiz as Bob G suggests. If you like, provide more information regarding your overall condition, testing and experiences with doctors while being diagnosed.

If you question your diagnosis - arm yourself with all the information you can obtain and seek out professional assistance until you are comfortable that your questions have been answered. If you don't keep a H/A journal I recommend doing so. It's an effective way to keep track of your condition, find effective meds. and communicate with doctors.

Stick around and keep us up to date. We can offer a lot of advise and support but unfortunately can't diagnose your condition through this board.

Best wishes on your journey,

Tom

Title: Re: never get woken up so maybe not cluster?
Post by pattik on Apr 10^th, 2006, 8:25am

Radha, What you are experiencing can certainly be a cluster headache. Up until recently, my headaches would come at the end of a night's sleep-not throughout the night. As soon as I would get up and moving they would ramp up quickly. Now things have changed to multiple hits through the night, so CH can change on you, and this unpredictablility is all part of it. PF wishes.
Pat

Title: Re: never get woken up so maybe not cluster?
Post by floridian on Apr 10^th, 2006, 11:17am

Can't really tell based on what you describe.

It is not possible to sleep through a cluster headache. BUT there are mini or para- cluster headaches (called shadows) that are a dull aching pain in the cluster area. A person could sleep through these, and notice them in the morning when awakening at a normal time. A full blown cluster headache is an extreme pain that cannot be ignored - it dominates conciousness. You cant sleep through a cluster any more than you could sleep while someone saws off your fingers and toes.

Title: Re: never get woken up so maybe not cluster?
Post by Kris_in_SJ on Apr 10^th, 2006, 7:06pm

Not everyone gets awakened from sleep by cluster attacks. During cycles to date, my clock is set at 8:30 p.m. and 2:00 p.m.

In other words, we are all different in terms of when our attacks occur. However, like many clusterheads, when I'm in cycle my sleep patterns are totally screwed up. I rarely sleep through the night - until the Melatonin kicks in, at least. I wake up several times a night, sometimes for long periods, and I always wake up with mild shadow pain until the cycle is over.

The moral here is - get a proper diagnosis. Cluster attacks don't always happen in the middle of sleep.

Kris

Title: Re: never get woken up so maybe not cluster?
Post by Radha on Apr 10^th, 2006, 10:47pm

i cannot tell all of you how much i appreciate the support and help you are offering, and taking the time to reply, the pain is always on the left side, involving the left eye, and sometimes going towards the back of the skull on the same left, and even ear pain too sometimes, and even cheek and teeth too. i dont think i am ever actually woken up from the CH, but can wake up with it, and lying down doesnt help, i am restless, and dont get any aura, but one thing, they usually last longer, more like migraines, but once in a while can just come and go fast, but not usually, hope all these details help, eating anything seems to trigger them for me most of the time, but i am other issues like low blood volume and POTS which is an autonomic condition and lyme too. thanks so so much for all your help!! relpax, imitrex, usually help.
radha

Title: Re: never get woken up so maybe not cluster?
Post by AussieBrian on Apr 10^th, 2006, 10:58pm

I hope you realise we're hopelessly jealous of you, Rad. For so many of us the disruption of sleep patterns can be worse than pain itself.

Great that you've medications you're happy with and have you noticed the buttons to the left? The Immitrex tip may save you some money while the oxygen and water X 3 sections make for excellent reading.

Information is our number one weapon against this beast so just let us know how we can help.

That's what we're here for,

Brian.

Title: Re: never get woken up so maybe not cluster?
Post by BobG on Apr 10^th, 2006, 11:51pm

Sure sounds like cluster to me. Sorry 'bout that.

Time to get a diagnoses from a cluster knowledgable doctor. There are preventative meds like verapamil available. You already know about abortives repax and imitrex (don't mix those 2). Oxygen is a favorite abortive. And there are alternative therapies, seeds, schrooms, kudzu.

Time to get reading here and the doctor appointment made. Best of luck to you.

Title: Re: never get woken up so maybe not cluster?
Post by Radha on Apr 11^th, 2006, 10:36pm

i want to take veramperil but cant since i already take alot of beta blockers to control tachcardia, and i have my own O2 tank at home but i use it for alot of reasons, brain fog, lightheadedness, heart pounding, i think i read that some of you fill your own tanks, is that true and where do you go to do that and how can you do that without a prescription? i get my tanks delivered by a home health service, and i only use the imitrex spray, never the shot, cant take the burn and way it makes me feel!! how often is using meds like imitrex and maxalt too often, 2, 3 , 4 times a week ok? i do have trouble opening my left eye when i get a CH but the nasal congestion is worse on the right nostril, thanks again so so much for all the help, but i do get other kinds of headaches too that involve the whole head, i am thinking about anti seizure meds like depakote, i dont know, thanks again!
radha

Title: Re: never get woken up so maybe not cluster?
Post by BobG on Apr 11^th, 2006, 11:14pm

on 04/11/06 at 22:36:38, Radha wrote:

i think i read that some of you fill your own tanks, is that true and where do you go to do that and how can you do that without a prescription? At welding equipment shops. Just don't tell them it's for breathing. And it takes an adapter to put the breather threads to the welding threads.

i get my tanks delivered by a home health service, If you are already getting O2 delivered I have to guess it's paid for by insurance. I'd say stick with that. And take time to read the strings about the ClusterMask

and i only use the imitrex spray, never the shot, cant take the burn and way it makes me feel!! Hit the 'imitrex tip' button on the left side of your screen. It'll show you how to use small doses.

how often is using meds like imitrex and maxalt too often, 2, 3 , 4 times a week ok? A week? Some clusterheads use that much a day! They probably shouldn't but you do what you have to do.

i do have trouble opening my left eye when i get a CH but the nasal congestion is worse on the right nostril, Very normal during an attack.

thanks again so so much for all the help, but i do get other kinds of headaches too that involve the whole head, i am thinking about anti seizure meds like depakote, There are some that use those meds. Can't hurt to try. i dont know, thanks again!
radha

Title: Re: never get woken up so maybe not cluster?
Post by AfraidOfTheDark on Apr 17^th, 2006, 2:40pm

I've always been woken by an attack, usually around 11:30pm. Until this cycle, all my CH came about after I was asleep. This cycle, I've been getting some hits during the day as well. It's been interesting observing the difference. During the day, I can feel the CH coming on, I feel it as it sets in, befoer it reaches the peak. At night I would wake up with the attack in full force and I'm immediately in great pain. So I'm assuming the pain from the CH isn't enough to wake me up until it's near the peak (my attacks are usually 30 minutes long).

I agree with others, it seems easier to get them during the day. Having hits at night has totally thrown my sleeping habits off track and I've taken quite a beating from it.