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        New Message Board Archives >> Jan-Mar 2003 >> Please read,something odd about my cluster attacks
        
(Message started by: shanejordan on Jan 29^th, 2003, 11:05pm)

Title: Please read,something odd about my cluster attacks
Post by shanejordan on Jan 29^th, 2003, 11:05pm

Ok Its been a while since I have been here...or to my neurologist (gunna defiently visit him soon).

I am a chronic sufforer since 97. I am 23 years old. My avg of headaches was 4-5 a day and is now about 1 a day. Now please read below for more information.

Ok well I am on topomax and take maxalt and imextrix shots during attacks.

Anyway heres the thing that has been happening. In the past I have got 80% of my attacks at night...waking up from them. They usually would occur around 3-4am in the morning.

Recently things have gone to just weird. About 2 months ago I woke up for no reason at 3:30am or so. No headache or anything. I figured it was because i needed to go to the bathroom. Anyway I go and lay back down to fall asleep. As I lay there I started getting a attack...i though nothing about it.

A few days later the same thing happened. I thought to myself that this was weird. Anyway next week I had my normal wake up headaches then the next week the same thing happened....woke up...nothing...then bam.

Now everyday this month I have woke up with no headaches. And while I lay down or get up to go to the bathroom I get them. And if I don;t get a cluster attack I will right before I daze off.

I am probally going to call my nuero tomorrow and ask if I should hit up a shot during this time...hell my idea here is to have the medication kick in before or right when the cluster attack happens.

Also during this time my headaches have started decreasing during the night and increasing during the day. Before on meds I was getting most of them at night and some during the day. When going on topomax I would get 1 during the day probally once a week and 1 every night. This month If I have woken up I get the headaches...but oddly enough I have actually on avg been getting less attacks at night and more during the day. Usually right after I get off or work.

I just want your input on this guys. Has anything like this happened to any of ya'll? I find it really odd that I wake up for no reason then later get a attack (usually within 5 minutes of waking up). Could it be that my brain has trained myself to know when a attack is about to happen and it wakes me up...or could it be that I just have kind of put my body into a waking up around this time mode?

The cluster headaches have been a crappy thing in my life...but its something I have learned to deal with. The usual pace'ing, hit head (no longer do this...nuro said BAD), push on temples and other parts on my right side of face, rock myself, curl on floor with head against group and sometimes rolling...whatever seems to make the pain go away....Im sure you guys no what I mean...you can find some small things to do that will make the pain seem to be less painful by tilting your neck/head one way etc.

Title: Re: Please read,something odd about my cluster att
Post by Mastifflvr28 on Jan 30^th, 2003, 12:16am

Welcome to clusterville Shane,
Unfortunately the beast puts on many different shows for us through the years and can become quit unpredictable.

One year I had a 3 month cycle where I woke up BEFORE an attack. The thing that woke me up was I got really hot and started sweating. As soon as I woke up, I started feeling the pressure, then JUMP up and run to the O2 bottle. That was only one year out of 15 that I actually had a warning. Weird.

I don't know if you are limited in your access to imitrex injections...but I wouldn't take a shot without KNOWING the pain is coming. What about Oxygen? You can jump on a mask before any pain hits...a lot cheaper.

Good luck!!
Mast

Title: Re: Please read,something odd about my cluster att
Post by K. on Jan 30^th, 2003, 12:31am

Shane,
The beast loves the element of surprise. Just when you think you have it under control everything changes on you. This cycle is just like the one Mast described in her post. I'm waking up right before I get hit. Grab the O2 and start breathing!

Mast...if you're still online...do you use a non-rebreather mask...I'm having a hell of a time getting one...I guess I actually need a prescription for one and my O2 supplier doesn't even carry it.

Title: Re: Please read,something odd about my cluster att
Post by Ted on Jan 30^th, 2003, 12:35am

on 01/30/03 at 00:31:07, K. wrote:

do you use a non-rebreather mask...I'm having a hell of a time getting one...I guess I actually need a prescription for one and my O2 supplier doesn't even carry it.

You don't need a prescription for a non-rebreather mask. Tell your O2 supplier to order them or go to a different shop. They're only a few bucks per mask.

Title: Re: Please read,something odd about my cluster att
Post by K. on Jan 30^th, 2003, 12:40am

Thanks Ted,

I'm getting one tomorrow then.

K.

Title: Re: Please read,something odd about my cluster att
Post by Mastifflvr28 on Jan 30^th, 2003, 12:58am

IF your oxygen supplier will not sell you a mask without a perscription...like MINE...
Here is an alternative:

http://www.mooremedical.com/index.cfm?PG=CTL&CS=HOM&FN=ProductDetail&PID=4269

good luck!!
Mast

Title: Re: Please read,something odd about my cluster att
Post by Roxy on Jan 30^th, 2003, 1:18am

Hi Shane....and welcome, :)

I'm glad topomax is working for you.....it didn't do anything for me, but everyone is different.

I've never woke up before an attack....but, my little monster has never been very organized (don't think he owns a watch!!!) Mine never come at the same times.....I think he just likes to surprise me.

I don't think I'd use the imitex before an attack.....I usually save that as a last resort....I only use it if everything else fails.

Glad you have learned to deal with these things....but, like Mast said....02 is a very good thing....go get some fast.

Hope you stay PF,

Tracey

Title: Re: Please read,something odd about my cluster att
Post by Chelle on Jan 30^th, 2003, 2:11am

Shane,
Here is an artical that I fould that may help you.

People with cluster headaches may have sleep disorders that could trigger nighttime attacks, according to a study in the June 27 issue of Neurology.

In this study, 20 out of 25 people with cluster headaches (80%) were found to have previously undiagnosed signs of obstructive sleep apnea, a condition in which the upper airway closes during sleep, breathing stops, and sleep is briefly but repeatedly disrupted throughout the night. Study participants who said their attacks typically started in the first half of the night tended to have more severe drops in blood oxygen levels--suggesting that the attacks might in some cases be triggered by apnea. Cluster headaches, which often occur during the night, are brief but extremely severe attacks of one-sided head pain, along with associated symptoms, such as eye tearing or redness, a runny or stuffy nose, and facial sweating, on the same side as the pain. Attacks tend to come in clusters, several times a day, and then may disappear for weeks or months. People with cluster headaches and their doctors should consider whether sleep apnea might also be a problem.

I'm not to sure if it true or not but something you may want to bring up with your nuro.
take care!
Chelle

Title: Re: Please read,something odd about my cluster att
Post by ozzman on Jan 30^th, 2003, 6:23am

Shane,

When this cycle started, I too woke up at 3:00 am for no reason whatsover, but had no attacks. Then one day they hit me. Right now I think I *may* be getting out of the cycle, but just this morning I awoke at 3:15 am and couldn't go back to sleep, almost as if the cycle is about to start. I have O2, Imitrex NS and shots and currently taking Verapamil.

Everyone is different, but the same.

Before i forget, sometimes when I wake up in the morning, I start to get hit, so I jump in the shower and most of the time I can abort it or at least delay it.

Hope this helps

Ozzy

Title: Re: Please read,something odd about my cluster att
Post by domm on Jan 30^th, 2003, 6:50pm

Shane - welcome. IMHO, I think the waking before an attack is because we condition ourselves (somehow) to recognize when an attack is coming. I have found that, even after I'm out of cycle, I find myself waking at specific times, all around when I got attacks. Now, saying that, I also have to say I don't usually sleep through the night. I normally wake every few hours (probably just checking to see if I'm still alive ;D). I'm a fairly light sleeper.
Good luck in finding the right stuff that works for you
PFDANs
domm

Title: Re: Please read,something odd about my cluster att
Post by kim on Jan 30^th, 2003, 7:06pm

Hi Shane,

I don't think any pattern can be relied upon when you are suffering from clusters. It makes it's agenda familiar. And, then that familiarity will suddenly pull what I call the "change up". the patterns first established at beginning of a cycle can change into something entirely different by the end of the cycle. It's something you will "attune" to.

Meds can play a big role in the patterns of clusters. The illness itself without medications of any kind already plays with our feelings and biological relation to "sleep". It stretches way beyond the wake sleep pattern and can invade every day all day and through the night.

Pay close attention to these changes and what meds you are on and keep a diary.

PFDAN :)

this is what i know after 25 years of episodic cluster..........it is not a chronic experience I speak of.... ??? Hope it gets better.

Title: Re: Please read,something odd about my cluster att
Post by cootie on Jan 30^th, 2003, 8:29pm

Hi shane...did anyone mention the sittin up ta sleep or maybe in a recliner deal yet....dont wanna be a 'pete 'n repeat' here.....wonderin if that 'mite' help when ya go back ta sleep or try ?? You can buy the big angle'd pillows to fer that fer the bed....jus a thought....good luck to ya....Pam