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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Cluster Newbie
        
(Message started by: amct15 on Nov 4^th, 2004, 8:20pm)

Title: Cluster Newbie
Post by amct15 on Nov 4^th, 2004, 8:20pm

Hello all,

I'm Andrew from NJ. I'll be 30 in January. I've not yet been officially diagnosed with Cluster Headaches, but I'm 99.9% sure it's what I've got. Though I'm right handed, for this excercise you can call me "Lefty". I'll try to keep the history short, but I'll probably fail.

Back in March, I had a few headaches that were quite unusual for me. But I never did anything about it, and they went away. Then a few months back, they re-appeared. After a couple really bad night-time shots, I decided I needed to see the doc. Initial diagnois... sinusitus. Hey, they're the medical professional, so I believed it... at the time. Now... no way!

I continued to get headaches daily, not bad ones though. Just mild and bearable. Typically they arrived at about 6:00 or 7:00 at night. They were more of a disruptive, uncomfortable nuisance than anything. But every few weeks I would get the 1:00 A.M. wake up call that I don't remember phoning in to the front desk!

By that time I had done plenty of research online based on my symptoms and descriptions of the pain. As more time, and headaches, passed I began to isolate the most likely candidate. Cluster Headaches!

Now recently, for whatever reason, the daily headaches have gone away. However, I've had the wake up call the past 3 or 4 Monday nights. Bad ones. Not as bad as what some describe, but I'd say about a kip 6-7. Enough to make me sit up in bed and rock back and forth, or stand up and sort of "dance" side to side like a 13 yr old at a school dance.

It's all there... the shooting pain in the eye, the congestion in the nose, the droopy swollen eyelid, tearing, red eye, sharp pain-short duration, maybe only 30 to 45 minutes, and then unbeleivable exhaustion that I can still feel the next day.

Has anyone else had their CH's appear and develop in a similar fashion that I've had? Or does anybody have any history of only having one attack per week as I have had the past few weeks? I'm getting a little scared about next Monday night!

On another note, I am very comforted to have found this site. It's nice to have someplace to talk about this with people who can completely understand. While I don't wish CH on anyone, it is nice to know I'm not alone. It's surprising to see how many people suffer from CH's and I had never even heard of it before.

Anyhow, thanks for taking the time to read my introduction ranting. Take care all.

Title: Re: Cluster Newbie
Post by Kris_in_SJ on Nov 4^th, 2004, 8:34pm

Hi Andrew,

Welcome. First rule of clusters ... everyone is a little different. My first cycle (age 42), I had 1 severe CH followed by 10 weeks of a kip 3-4 shadow (no diagnosis). Next cycle, I started with 1 every 4-5 days, soon becoming 1 every 2-3 days, followed by 1 every day at exactly the same time (finally diagnosed). Went PF for 4 years, but was prepared for the most recent cycle (in terms of knowledge anyway).

With diagnosis in hand, I was able to start the med cocktail that has become my personal salvation.

First, and most important, you need a diagnosis - preferably from a neuro who specializes in clusters. It sounds to me like your cycle is probably coming to an end, but you need to be prepared for the next one, and a Neuro can run some tests and make a diagnosis based on symptoms.

Keep a HA diary - times, days, duration, intensity, how you treated, etc. Take it with you to the doc, along with all the knowledge you're going to gain by reading, reading, reading!

Many Hugs,

Kris

Title: Re: Cluster Newbie
Post by E-Double on Nov 4^th, 2004, 8:44pm

Whattup Lefty...
I'm righty although sometimes I switch ;) >:(
Ditto all the above.
We're a rare breed it seems and there are many cocktails that are effective for some but not others.
Get a proper diagnosis and seek proper treatment.
Good luck finding relief and arm yourself with information.
Stay as positive as can be, for this can be a grueling battle.

Here if you need.

Eric

Title: Re: Cluster Newbie
Post by amct15 on Nov 4^th, 2004, 9:03pm

Thanks Kris, thanks E,

Appreciate the info.

I've been planning on getting myself to see a neurologist, but I think maybe I've just been a little too paranoid. I've been meaning to keep the HA diary as well. I've been relying too much on memory.

One other point I forgot to ask about. Does anyone ever have attacks that also include (or are perhaps preceded by) leg twitching? If you're familiar with what has been called "restless leg syndrome" this is what I'm referring to. The past few Monday's when I've had the attacks I also had this almost uncontrollable need to rapidly move/twitch my legs. It sounds crazy I suppose, but I was just wondering if it's related in some way.

Thanks again for the advice.

Andrew

Title: Re: Cluster Newbie
Post by EmpressJMB on Nov 5^th, 2004, 9:05am

Hi Andrew and Welcome! Sorry your here. If you mean you shake your leg(s) during an attack, yea, I do that when my ha is midscale. When the pain ramps up, that's when I really start moving; no more leg shaking, I have to get up and pace. I don't mean involuntary leg twitching though, like inside the muscle. Most if not all of us have to do some kind of movement during an attack. Probably the bodies response to try and find a pain free place. I highly recommend finding a neurologist and keeping a ha diary just as Kris said. Good luck in your search to find relief. Janet

Title: Re: Cluster Newbie
Post by amct15 on Nov 5^th, 2004, 12:50pm

Thanks Empress,

The leg shaking I do is not quite involuntary, but not quite voluntary either. I get this weird feeling in my legs that makes me want to twitch them rapidly. So in a way, I'm twitching my legs on purpose, but at the same time it's almost an uncontrollable need to do so. It's a bit strange I suppose. Had another wake-up call last night, about a k6.5. Only once previously did it hit me twice the same week. I suppose I should warm up to the idea that this may become more regular than I'm ready to admit to myself.

Title: Re: Cluster Newbie
Post by Bob_Johnson on Nov 5^th, 2004, 2:37pm

My clusters took five-years to develop into a fixed pattern of pain site, quality of pain, etc. It's one of the many reasons that it takes so long to get a good Dx--the attacks may not fit the textbook model.

Title: Re: Cluster Newbie
Post by sandie99 on Nov 5^th, 2004, 3:22pm

Hi Andrew! :)

Welcome to the CH family!
Too bad that you have to suffer from Ch, but I am so glad that you found your way here. :)

You said that you are 99.9% sure about your diagnosis. I do hope that a neuro will soon confirm that and that you'll get the meds which actually work. It might take some time.

Anyways, enjoy your stay here & strenght to the fight againts CH. It's quite a beast...

Best wishes & PFdays,
sandie99

Title: Re: Cluster Newbie
Post by amct15 on Nov 5^th, 2004, 4:53pm

Hi Bob, hi Sandie,

Yes, the .1% of me that questions my self diagnosis has been that my attacks really haven't had any pattern to them at all, it's really been completely at random. But I'm nonetheless certain.

I wonder if the beast is in any way easier to deal with if you know it's coming rather than having hit out of now where? Any thoughts?

I do hope to get to a neuro soon, I've just been trying to see if I can find one that is more likely to at least be familiar with CH's

Title: Re: Cluster Newbie
Post by thebbz on Nov 5^th, 2004, 9:19pm

Hello and sorry your here. On thing I wished I had done 25 years ago was keep a diary. There is no rhyme or reason with the beast is seems , although in retrospect I know I had in the beginning more erratic episodes. Now I know had I done documentation I could have saved maybe some pain. Get to the neuroligist. It's worth the money. All the best
BB

Title: Re: Cluster Newbie
Post by thudpucker on Nov 8^th, 2004, 4:55pm

No one has suggested melatonin for the nighttime headaches?

6mg of melatonin before bedtime has been keeping me pf since I started using it a month or so ago.

Title: Re: Cluster Newbie
Post by E-Double on Nov 8^th, 2004, 5:44pm

To be honest....The random attacks were what finally made me seek treatment after having these for a decade. After years of "classic" cycles only @ night they started all dayy and night and such random moments that I never new when I was going to get attacked.

We're all different apparently.

Good luck, research and stay positive!!!

Oh yeah I'm not a doctor but MELATONIN pretty much wiped out my night time attacks. Sleep is good ;)

E.

Title: Re: Cluster Newbie
Post by angel-ache on Nov 8^th, 2004, 8:49pm

Meletonion is the bomb!!!

I "was" taking 9 mg before bed. No harm in it. No sleepy hang over, just a good night sleep. It has been said to help reduce your average mg perscriptions. I know I stepped down my verepamil mg's one week after taking Mel.

I am currently taking 1 tablet (3mg) of Mel, and 1 80mg tab of verapamil. I have tappered down since starting Mel (I think I am ending my cycle) I was taking 420mg of verapmil a day. But, I feel great every morning, very rested.

Thumbs up for meletonion!!!!!!!!!!

Angela

Title: Re: Cluster Newbie
Post by angel-ache on Nov 8^th, 2004, 8:51pm

BTW: I am buying my father a bottle of Mel for x-mas. He can't seem to sleep more than 3 hours at a time. He can't fall back asleep very well. I really think that it will help him.

Angela