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        New Message Board Archives >> 2003 Posts >> Clusters or Not?
        
(Message started by: hootchdom on Dec 1^st, 2003, 2:49pm)

Title: Clusters or Not?
Post by hootchdom on Dec 1^st, 2003, 2:49pm

Okay guys and gals I need lots of responses. Do I suffer from clusters or not.

Six headaches a day for 18 weeks. Each headache last approximately 4 hours from start to finish. Normally start around a KIP 1 or 2 and peak 2 to 3 hours later anywhere from KIP 5-10 depending on the meds I’m on and another hour down to a kip 1 or 2 only to start another headache. Last 18 weeks (unless I’m on predisone tapper) I can’t sleep more than 1 ½ to 2 hours at a time with out waking to a KIP 7-10. I don’t sleep more than 3-4 hours a night.

The other main point. In 18 weeks I’ve never really had a PF moment, the lowest I go is a 1 and the next headache starts. Is this typical?

Okay is this typical Cluster Headaches?

Title: Re: Clusters or Not?
Post by thomas on Dec 1^st, 2003, 2:52pm

From my experience there is nothing typical about cluster headaches. What you are experiencing sounds like cluster headaches. I hope that helps. What kind of abortive meds are you on?

Title: Re: Clusters or Not?
Post by ClusterChuck on Dec 1^st, 2003, 2:52pm

Nope, it is not typical, but then again, many are not!

Describe you pain. Where is it located? How does it progress?

What test have you had done?

Sorry you are in such pain!

Chuck

Title: Re: Clusters or Not?
Post by vig on Dec 1^st, 2003, 2:55pm

the four hour duration kind of raises a flag.
Most clusters average an hour.......

You can say that again!

Title: Re: Clusters or Not?
Post by thomas on Dec 1^st, 2003, 2:57pm

on 12/01/03 at 14:55:56, vig wrote:

the four hour duration kind of raises a flag.
Most clusters average an hour.......

I have had many, chs last longer than 3 hours. Some as long as 6. Most of the ch that I've had that lasted less than an hour are ones that I have aborted.

Title: Re: Clusters or Not?
Post by hootchdom on Dec 1^st, 2003, 3:06pm

Sorry should have told you about the pain.

Always on the left side, almost always starts behind the eye, when they reach above a KIP 7 they are always behind the left eye. Alot of the time the go to the left temple. Seems like I want to sniffle at the start of the headache.

Title: Re: Clusters or Not?
Post by vig on Dec 1^st, 2003, 3:08pm

runny nose? teary left eye? droopy left eyelid?

any of those?

Title: Re: Clusters or Not?
Post by Prense on Dec 1^st, 2003, 7:14pm

on 12/01/03 at 14:49:53, hootchdom wrote:

Six headaches a day for 18 weeks. Each headache last approximately 4 hours from start to finish. Normally start around a KIP 1 or 2 and peak 2 to 3 hours later anywhere from KIP 5-10 depending on the meds I’m on and another hour down to a kip 1 or 2 only to start another headache. Last 18 weeks (unless I’m on predisone tapper) I can’t sleep more than 1 ½ to 2 hours at a time with out waking to a KIP 7-10. I don’t sleep more than 3-4 hours a night.

6 HAs @ 4 hours per (approximate) = 24 hours... between 3-4 hours of sleep a night... How long are the days where you are at? ;;D

Seriously, it sounds like you are having one long ass HA that kind of "surges" in intensity. Those types of HAs are more typical in various forms of migraines (I think). I don't believe the chronic daily HA is normally one-sided, but it may be. Migraines can be unilateral, but not always.

As far as CH goes for me...it is not behind my eye...it is my eye. That is precisely where my pain is centralized on. It comes on quick...about 20 minutes to peak and drops off as quick if not quicker. A complete attack for me doesn't last longer than about 3 hours. Shadows, on the other hand, can last alot longer...same kind of pain on a much lower scale and don't develop into an attack.

Major symptoms missing from what you described for CH is tearing of the eye (totally uncontrollable) on the affected side, drooping eyelid (same side) and runny or conjested nostril (again same side).

Just an opinion, hope that helps some...

Chris

Title: Re: Clusters or Not?
Post by don on Dec 1^st, 2003, 7:32pm

Question 1.

What does your neuro say?

Question 2.

Do you have a neuro?

Title: Re: Clusters or Not?
Post by brain_cramps on Dec 1^st, 2003, 8:50pm

on 12/01/03 at 19:14:33, Prense wrote:

6 HAs @ 4 hours per (approximate) = 24 hours... between 3-4 hours of sleep a night... How long are the days where you are at?

That's the first thing that hit me!

You say the headache starts at a 1 or 2 on the KIP scale. Sorry, but while I'm in cycle, a KIP-1 or 2 is as painfree as it gets and I wouldn't even consider that as part of the "headache". To me, that's HEAVEN.

Either we have a different idea what a KIP-1 or 2 is or a different idea of when the "headache" starts and ends.

just my .02,
grant

Title: Re: Clusters or Not?
Post by BlueMeanie on Dec 1^st, 2003, 9:17pm

Water pouring out your left eye and nose would be a good symptom of a cluster. For years before I finally got O2 & Imitrex, I dealt with the pain with very little meds. Back then, prior to meds, I would have 4 hrs easily. Then from hurting so bad, the headache never went away before it was time for the next one to start. If you are not taking prevents & nothing to stop the pain, I can believe you may have CH. I would still recommend a neuro 1st to rule out anything else.
Sending PF vibes your way.

Title: Re: Clusters or Not?
Post by hootchdom on Dec 2^nd, 2003, 10:01am

Thanks for all the replies guys. You have given me some insight.

I think most of the four hours is spent what you all call shadowing or what I call the hangover from the cluster headache or the ache for the headache. The Cluster Headache seems to last anywhere from a 1/2 hour to 45 minutes. Then my head aches till the next one starts about 4 hours later. It seems the ache will radiate from the eye to the left temple start with the intensity of the cluster and slowly drop to a shadow. But they can sure be damn painfull.

Yes a KIP 1 or 2 is bliss. I can get to sleep at a kip 1 or 2 and I do only sleep for an hour and half or two before the beast awakes me just like so many others. I think it has something to do with the REM thing.

Yes I have a neurologist, I’m on my 2nd one in 18 weeks. I have a appointment with my 3rd in January. Also have an appointment with KU medical research department in January. Had two MRI’s, one CT, Carodic Doppler, and a Spinal Tap.

Been on Prednisone (3 tappers), Toprol (Beta Blocker), Lithium (900mg), Medrol (Another steroid), Zomig (Triptan), Verapimal, Replex (Triptan), Frova (Triptan), Amerge (Triptan), Imitrex Nasal, Indomethacine, Topomax (Anti Seizure), DHE-45 Self Inject, Lexapro (SSRI), Melatonin and Clomid which is the only one that has altered the course of the headaches. Next on the list is Baclofen then Aircept after that my last hope is shrooms.

Now I will get off my soap box.