Just checking in!

I found this place by accident from Clusterheadaches.com, and glad I did.  I don't feel as 'alone' as I did.  I know no one else who has CH.

I'm 59 and have had this since about '93 and it lasted for almost 12 years. Usually 1-1/2 years between episodes.  Then went away in Oct '04.  Came back on Jan 26th more intense than ever.  :'(

The Cluster Headaches are driving me nuts!  Every night from about 8pm or so, I have an episode lasting from 1 to 3 hours.  I want to blow my brains out!  Most of the day, it's just a dull ache from the pain the night before. The only relief when I have an episode is the Sumatriptan 6mg injections which take away all of the pain within 10 minutes.  Sometimes it comes back 2 hours later.  I went through 6 of them in the last 2 weeks.  The tabs take more than an hour.  I've also have been eating a lot of Sumatriptan 100mg tabs, probably at least 2 per day.  I'm getting 60 more tabs tomorrow and have 4 injections left.  

I'm going out of the country in less than 2 weeks for 3 weeks, and I don't think I can get any more through the insurance before I leave, and it's REAL expensive stuff (example: 3 generic refills cost me $10.00 co-pay and the plan paid $420.12.  The tabs for 45 of them cost me $30 and the plan paid $977.04).  That will be a real PITA if I still have episodes by then and run out of medicine.  

Anyone have an ideas of other remedies while in I'm Jamaica for 3 weeks?

Welcome Marty

Check out the Oxygen info tab on the left,it's a good start.

Hi Marty and welcome. Myself I would not think about going out of country while in high cycle, but that is me. I think I would go into panic mode if I had to be away from my o2 as that is my abortive.

Have you talked to your doc about o2? Works for about 70% of us here. Also, I have taken Prednisone tapers in the past that worked the very same day to stop the hits in their tracks. I do not use it now as I am somewhat athletic and do not like how it made me feel, so the o2 is my abortive now.

Others here travel all the time while in cycle, so hopefully some will post here and maybe you can find out how they travel while in cycle.

Have a nice vacation, and hope you get some PF time while you are there.

  Barry :)

Before we can be very helpful we need more information about: full range of treatments you're using; is your doc a headache specialist.

The quantity of Suma. you're using can, for some folks, change/increase their attack pattern. Generally, pill form is least effective for most CH.

Before traveling out of the country, get a written statement from your doc giving Dx and meds you will be carrying. Customs issue.

Suggest you read this full article and see if it gives you some ideas and/or may trigger some lmore targeted questions for us.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Great idea about having a written statement from my Dr.  That makes a lot of sense.  Not that I can source any Sumatriptan while in the Caribbean, and even if I could, probably at a small fortune.

The only treatment I'm using is Suma 100mg tabs, but they don't work that well.  The 6mg Inj works in under 10 minutes, but doesn't last for more than an hour or 2, and the insurance won't pay for many of them.  I'm also taking 2-200mg Naproxin with the tabs since I read that the new Treximet is 85mg Suma and 500mg Naproxin.  So I figured I'd try it.  Still doesn't work that well.  :-/

I also read (on this board?) that caffeine may help and made a big pot this morning and will put it in the fridge for when I need it.  Worth a try!

I've read that article, and it only told me what I know already.

What I really found interesting is this: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Right to the point information for those who think Cluster Headaches are just Migraines.

OTC pain meds are useless for CH and continued use creartes new problems. I'm getting a feel that you need a good headache doc.....

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


 

Good stuff, Bob!

I especially noted the Melatonin 9mg part, which sounds interesting.  I'm buying some today to see what it does. Side effects are almost non-existent.

I saw a specialist (neuro) years ago when I was finally diagnosed with CH after many doctors didn't know what the heck it was or what to do.

But treating it is the issue now.

Interesting that I had an episode last evening and due to the O2 treatments I've been reading, tried hyper-ventilating until I got dizzy.  Maybe it was a fluke, but it went away in less than 1/2 hour.  We'll see if it helps the next time, since I haven't sourced any O2 yet.

Replying to myself to update my symptoms for the rest who have helped me so far!  And thank you for this forum!!!!

It's 7:05PM EST. I had another episode which started at about 6pm.  I decided to stay away from Suma medication to see if I could stop this like I did last night.

Like last night, I breathed in and out as hard as I could for about 15 minutes, and my wife gave me some of the iced coffee (Blue Mountain, lots of caffeine) which I made yesterday.  I also had an ice cold water bottle held to my head.

I don't know what did it, but without Suma, the pain went away 15 minutes ago!!!!!  It will probably come back tonight since my episodes are always starting at 8:00 to 8:30 like clock work.   I hope not tonight!

But I now think that O2 therapy would work great for me, because the hyper-ventilating is close to, but not anywhere near as good as O2.

Just food for thought!

I still can't believe I didn't have to take a shot or a tab to get rid of it tonight so far!

Feels GOOD!  VERY good!    :D

Again to myself to provide an update for the benefit of other who read my earlier post!

Yes, it did work again last night....  but only for 1/2 hour, and then came back strong.

Tried the same thing, and the CH went away in 15 minutes or so.  But came back in 1/2 hour again.

This went on till I had 6 episodes in a row which were identical in getting rid of it, then coming back in 1/2 hour or so.

At 2am, I finally took a Suma 100mg tab during a 'lull', and slept until 6am when I had to drive to a client's site almost 100 miles away.  On the way home, I had another episode, and you guessed it, heavy breathing got rid of it.  When I got home, I took a Suma 100mg, but I fully expect it to return in a few hours.

What a PITA!!!