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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New to Clusterville
        
(Message started by: Susan7105 on Apr 23^rd, 2004, 10:46am)

Title: New to Clusterville
Post by Susan7105 on Apr 23^rd, 2004, 10:46am

A brief picture of me and CH - started Sept. 95 when I began a job with a homophobic athletics dept. in Chicago. Reached a peak in Houston, different job but management problems, in August 2002. Quit the job, moved to Philly, opened a business, headaches actually got better, if you can believe that. Cycle is one headache each day from Thurs to Sat, starts at 4 am, ends around 6 pm on those days. In summer of 2002, continous days of headache for July, August, until Sept. 15th, when I quit the job. Then brief respite when on steriods of about 2 months. CH began again, but confined to two cycles (TH-Sat) only twice a month, instead of every week. I was able to manage them better, and right now I take Amerge at the onset (facial muscle tension, ear feels plugged up, dim headache starts on left side, then grows). When I catch it early enough, Amerge works about 95% of the time to abort the headache. Once every two months or so, nothing stops it, and it is BAD. Just live through, like all of you.
In the early years I just reacted to the headaches with pain-killers and more pain-killers. Tried Inderal, no good for me. Now I use hot, hot water with shower massager on a spot that seems to trigger headache (below left shoulder). And no alcohol, yes to exercise, Tiger Balm on temples, no exposure to cigarettes or paint or perfume. I did discover (for me alone maybe) that headaches create immense feelings of despair, and when I can convince myself that the despair is biological, it disappears and the headaches tends to wind down a lot faster. My neuro had heard of this feeling before, but no one has studied it that I know of.
Feel for everyone out there with CH, supporters and sufferers alike. I've had female migraines, given birth, had a C-Section, and I do that all over again and again if only the CH would stop.
Blessings,
Susan

Title: Re: New to Clusterville
Post by echo on Apr 23^rd, 2004, 11:31am

Susan,

Sorry that you are having a dance with the beast. It always pains me to see yet another person being victimized by this SOB. Glad you found us. Sorry you needed to.

Title: Re: New to Clusterville
Post by pubgirl on Apr 23^rd, 2004, 12:25pm

Hi Susan

Do you mean that the pain gradually grows in intensity from low level to high?

How long does this take?
I only ask because this is quite rare with CH, it normally is an abrupt onset and cessation, almost like a switch going on and off.

Wendy

Title: Re: New to Clusterville
Post by Margi on Apr 23^rd, 2004, 2:22pm

on 04/23/04 at 10:46:42, Susan7105 wrote:

Cycle is one headache each day from Thurs to Sat, starts at 4 am, ends around 6 pm on those days. .... CH began again, but confined to two cycles (TH-Sat) only twice a month, instead of every week.
Susan

sure doesn't fit the cluster profile, Susan - have you taken the cluster quiz on the left? Clusters are individual attacks lasting for a much shorter time than you mention, with relative pain freedom between the attacks. They happen frequently, daily, sometimes hourly - not semi-monthly. If you've been diagnosed to have clusters, I'd sure seek out a second opinion from a cluster-knowledgeable neuro - there's a list of them in the first menu above the map at www.clusterheadaches.org.

Hope you find some answers and some relief to your pain.

Title: Re: New to Clusterville
Post by Prense on Apr 23^rd, 2004, 6:47pm

on 04/23/04 at 12:25:21, pubgirl wrote:

Do you mean that the pain gradually grows in intensity from low level to high?

How long does this take?
I only ask because this is quite rare with CH, it normally is an abrupt onset and cessation, almost like a switch going on and off.

I didn't key in on this as much as what Margi quoted. I definately agree that a second opinion is in order.

I hope you get some answers AND relief Susan!

Chris

Title: Re: New to Clusterville
Post by Susan7105 on Apr 23^rd, 2004, 10:06pm

I was diagnosed, but I will take the quiz, and let you all know, I'm convinced I have clusters because of the left side focus, head/neck sweating, Intense pain, cyclical nature. I do have a distinct period of intense discomfort (facial muscles tense up, ear stops up, neck sweats) before I get to the hellish pain, and that's where the Amerge really works well. I did have an MRI, no brain tumors, etc. My profile might be different because 1) I had 'female' migraines at lot growing up (really different kind of headache), and 2) I'm female (where the majority of CH sufferers are men?).

Title: Re: New to Clusterville
Post by Susan7105 on Apr 23^rd, 2004, 10:23pm

I took the quiz on this site - One yes for questions 1-8, and two Nos for questions 9-16. But I found this description which fits me to a 'T':

Quote:

Cluster pain originates behind or around one eye and generally awakens the individual from sleep. The pain may radiate into the temple, jaw, nose, teeth, or chin. The eyelid droops, the eye tears. The face flushes and the nose congests. There is usually no nausea or vomiting. During an attack, the person is restless and agitated, pacing and desperate to find relief for the head pain. Alcohol, cold wind, and heat blown into the face may initiate an attack during a cluster period.

My cycle is different, the onset of pain is different. But the above is exactly what happens to me. I've had water squirt of my eye onto my glasses with each stabbing pain. And I started off an attack myself by starting the car before I turned off the heat which blasted into my face and caused instant CH. And kicked on off with one sip of wine. Those times the pain was immediate onset, no ramp up. Other times I have an slower start, and I can effectively medicate then. Does anyone have that dismay I wrote about? I know the whole experience brings feelings of dismay, but these feelings are produced by the headache itself or the brain (IMO) and can be turned off.

Title: Re: New to Clusterville
Post by HypnoticFreddy on Apr 23^rd, 2004, 10:43pm

Hi Susan,

I, too, am not sure what kind of headache you have. It may be clusters. Whatever it is, it sounds Hellish. I hope you and your doctor can figure it out. I think you need to be more aggressive in a treatment plan. Try some common preventatives. Have you ever tried Verapamil? As long as your blood pressure is OK, it is the most commonly prescribed preventative medication given to cluster headache victims. Read the links on the left, especially the medical info and OUCH website links (where they have even more medication information). Print out the documents. Bring them to your doctor. In addition you will need an abortive(s). The best (statistically) are Imitrex injections and/or oxygen. If your Neuro does not know or think it is necessary to use them than either he/she does not believe you have CH's or he/she does not know how to treat CHs and get a referral to see a new Neuro.

Just out of curiousity, you said that despair is biological.
I disagree. Pain is biological. Despair is mental.
The good news and you will find it here at clusterheadaches.com, is that both pain and despair CAN be managed. There are a lot of good and knowledgable people here.

Good luck!
and welcome to this elite group.

-Scott

Title: Re: New to Clusterville
Post by Susan7105 on Apr 23^rd, 2004, 10:50pm

Thanks for the advice, I will check out site, preventives and neuros. About the despair - I mean that its a physical component to the pain. I might not be able to describe this right, but I will try (it's late for me). I mean that the feeling or sensation of despair is caused by the pain or the swelling or the muscle tension, and that it's not emotional or mental, that when the pain stops the sensation of despair goes with it. I'm probably too tired to explain this properly, and maybe it's not even important, I just thought it was interesting that I could affect my headaches by switching off the despair sensation.

Title: Re: New to Clusterville
Post by pubgirl on Apr 24^th, 2004, 1:45am

Susan

I don't want to confuse you, but there are many different headache types that are one-sided and have the autonomic features you describe. Most of them are also cyclic or episodic too.
Those alone do not give a CH diagnosis (despite what many GP's and neuros think)

Hope you get a good Headache specialist who can help you, and although you may feel it is a good thing Ch was diagnosed IT ISN'T . Almost every other unilateral headache is easier to treat than CH

Wendy

Title: Re: New to Clusterville
Post by Susan7105 on Apr 24^th, 2004, 11:17pm

Hmmm, this club is getting pretty exclusive so I'll leave you all to your medically confirmed clusters, but I do think these descriptions of chronic CH fit my bill, esp. the last one:

3.1.2 Chronic cluster headache
Description: Attacks occur for more than one year without remission or with remissions lasting less that 14 days.
Diagnostic criteria:
A - 1. Conjunctival injection 2. Lacrimination 3. Nasal congestion 4. Rhinorrhea 5. Forehead and facial sweating 6. Miosis 7. Ptosis 8. Eyelid edema.
B. Absence of remission phases for one year or more or with remissions lasting less than 14 days.

3.1.3.1 Chronic cluster headache unremitting from onset
Previously used term: Primary chronic
Diagnostic criteria:
A 1. Conjunctival injection 2. Lacrimination 3. Nasal congestion 4. Rhinorrhea 5. Forehead and facial sweating 6. Miosis 7. Ptosis 8. Eyelid edema.
B. Absence of remission periods lasting 14 days or more from onset.

3.1.3.2 Chronic cluster headache evolved from episodic
Previously used term: Secondary chronic
Diagnostic criteria:
A. 1. Conjunctival injection 2. Lacrimination 3. Nasal congestion 4. Rhinorrhea 5. Forehead and facial sweating 6. Miosis 7. Ptosis 8. Eyelid edema.
B. At least one interim remission period lasting 14 days or more within one year after onset followed by unremitting course for at least one year.

Comment: During a cluster period and in patients with the chronic form attacks occur regularly and may be provoked by alcohol, histamine or nitroglycerine. Pain is maximal orbitally, supraorbitally and/or temporally, but may spread to other regions. Pain usually recurs on the same side of the head during an individual cluster period. During the worst attacks, the intensity of pain is excruciating. Patients are unable to lie down and typically pace the floor. Age at onset is typically 20-40 years. For unknown reasons men are afflicted 5-6 times more often than women. The mechanisms of the pain are incompletely known despite abnormalities demonstrated by studies of corneal indentation pulse, corneal temperature, forehead sweating, lacrimination and nasal secretion or by pupillometry, thermovision, extracranial and transcranial Doppler.

3.2 Chronic paroxysmal hemicrainia
Previously used terms: Sjaastad’s syndrome
Description: Attacks with largely the same characteristics of pain and associated symptoms and signs as cluster headache, but the are shorter lasting, more frequent, occur mostly in females, and there is absolute effectiveness of indomethacin.
Diagnostic criteria: A. At least 50 attacks fulfilling B-E. B. Attacks of severe unilateral orbital, supraorbital and/or temporal pain always on the same side lasting 2 to 45 minutes. C. Attack frequency above 5 a day for more than half of the time (periods with lower frequency may occur). D. Pain is associated with at least one of the following signs/symptoms on the pain side: 1. Conjunctival injection 2. Lacrimination 3. Nasal congestion
4. Rhinorrhea 5. Ptosis 6. Eyelid edema E. Absolute effectiveness of indomethacin (150 mg/day or less).

Comment: Most attacks last 5-20 minutes and frequency may be as high as 30 per 24 hours. Although longer lasting remissions are not seen in chronic paroxysmal hemicrainia, frequency, duration and severity of the attacks may vary. Nausea and vomiting rarely accompany the attacks. There is great female predominance. Onset is usually in adulthood. The chronic stage may probably be preceded by an episodic stage similar to the pattern seen in cluster headache, but this has not yet been sufficiently validated.