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        Cluster Headache Help and Support >> Cluster Headache Specific >> Am I unusual? LOL
        
(Message started by: BaseballCoach on Dec 11^th, 2007, 3:37pm)

Title: Am I unusual? LOL
Post by BaseballCoach on Dec 11^th, 2007, 3:37pm

Just joined the site yesterday as some might have read. I've been reading about people and their "cycles" with the headaches leaving for 2 years and coming back for a few weeks.

I started getting them about 5 years ago. The longest I have ever gone without a headache is maybe a month. In the last 2 years, I probably haven't gone over 2 weeks! And the last several months, I get them twice a day and I may skip a day or two in between. I probably use 20 imitrex injections a month which scares the heck out of me. The doc told me I was the 2nd worse case he's seen (Hate it for the worst). Anyone else have them this often?

Title: Re: Am I unusual? LOL
Post by thomas on Dec 11^th, 2007, 3:52pm

on 12/11/07 at 15:37:15, BaseballCoach wrote:

Anyone else have them this often?

Yep. Not me, but yeah lots of folks here are chronic.

Title: Re: Am I unusual? LOL
Post by EstieSA on Dec 11^th, 2007, 4:29pm

on 12/11/07 at 15:37:15, BaseballCoach wrote:

Anyone else have them this often?

:( Jip.

Daily.

200mg Topamax makes breaks of up to 3 days posible...

Title: Re: Am I unusual? LOL
Post by Guiseppi on Dec 11^th, 2007, 6:16pm

There are chronics on the board who measure the hours between hits. I'm lucky????? enough to be episodic. I'll get at least a few months, longest was 2 beautiful years, between cycles. It goes all over the board.

As far as that goes keep reading about some of the options for people like you who are getting creamed. Have never done it but have read of successes with DHE? therapy. Or perhaps combining different medications such as verapamil and lithium, or even some of the "alternative" options available to you!

Lots of reading to do! Good luck to you.

Guiseppi

Title: Re: Am I unusual? LOL
Post by Redd on Dec 11^th, 2007, 8:00pm

I was just like that for Oh....sheesh I'd say a good 10-14 years. I'd get smacked once sometimes twice a night for 3,4 or 5 days then get 2,3 or 4 days break then back at it for another few days, then a few days break.

It's not a typical manifestation of CH..but not unheard of either.

Title: Re: Am I unusual? LOL
Post by brewcrew on Dec 11^th, 2007, 8:04pm

Remember, you're unique - just like everyone else.

Title: Re: Am I unusual? LOL
Post by Bob_Johnson on Dec 12^th, 2007, 7:02am

Consider asking your doc about lithium; is helpful for chronic cluster and can be combined with Verapamil.

Explore: http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
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)

http://www.plainboard.com/ch/chtherapy.pdf

Title: Re: Am I unusual? LOL
Post by swimchica623 on Dec 12^th, 2007, 10:19am

Everyone's CH shows up different....lol yup "you're unique, just like everyone else." I'm like a few other chronics on the board, having high and low cycles...hits will slow down significantly for awhile and really be under control (though for me personally this is because the medicines are really working, yay, during a period like this if I forget to take something, you can really tell, get all worried something bad is going to come, then look at the pill keeper...whoops!). Then during periods of the year it will ramp up into a high cycle and just get slammed for awhile, sorta like a episodic's cycle, for me a high cycle can last anywhere from a few weeks to a few months and tends to run with the seasons. It seems like the medicines just lost control for awhile and things just go haywire, then things go back under control to a few hits a week and quite a few intense shadows. But after a high cycle, it is relief and I can deal!
Hope you get some relief with your new meds, and glad you found your new home. :)
Lisa

Title: Re: Am I unusual? LOL
Post by BaseballCoach on Dec 12^th, 2007, 3:51pm

Actually was prescribed Lith, Read the side effects and it scared the Bejesus out of me....told the doc that I still had them the other day and he said hold off and lets see if this other works. He does have me on very low varap...only 120 and I can only take a half of pill....My BP was 100/70 and he's worried I will pass out. Said after 7 days I can work my way up to 120.

Title: Re: Am I unusual? LOL
Post by brewcrew on Dec 12^th, 2007, 6:14pm

My opinion (and that's all it is) - 60mg of verapamil won't touch CH. It is generally accepted that the theraputic dosage of verapamil is between 240 mg and 960 mg per day.

And as far as lithium side effects, as long as you don't go over the effective dosage for CH (which is generally about half of what a bi-polar patient has to take), there should be little to no side effect. I take 900 mg per day with absolutely no side effects whatsoever.

Title: Re: Am I unusual? LOL
Post by swimchica623 on Dec 12^th, 2007, 6:33pm

There are some other things you can try too...I'm one of the few that have been able to take topomax and still remember their name and this seems to be one of the best drugs in the "cocktail" based on how days go when I accidently forget to take it and success I had when I increased it. But like I said, I lot of people haven't been able to be successful or unsuccessful with it because the side effects are too bad (it can make you stupid...I say have enough smarts to go around, hehe) but for people that can take it, it seems to work real well, so its something to discuss with your doctor about trying...worth a go, I'd say.
About lithium, from what I've seen as trends on the board, a lot of men seem to be real happy with it, especially when its used with verapamil (but a higher dose if you BP can take it). I had a horrible experience with it, I felt like I was looking in on my life, did not want to do ANYTHING, I felt so sad...a few other women have told me they felt like this too, so I think it is odd that lithium seems to have this gender split. Not all men/women, I just picked up on this trend a bit. So the odds may be in your favor?
Good luck to you,
Lisa

Title: Re: Am I unusual? LOL
Post by BaseballCoach on Dec 12^th, 2007, 7:40pm

Guys, I was wrong.....didn't look at my script or meds and just did....my Verap is actually 80 MGS! And i'm only taking a half so only 40 right now....He told me I would eventually get higher, just have to give body time to adjust.

I took the Topomax a while back and actually stayed on it a while....Got up to 300 mgs per day (100 3X a day)....I think the alcohol never gave it a chance to work.....

Now that i've started back, I'm starting with 50 mgs of Top per day....25 twice a day....Hopefully within a few weeks I'll be back up to 200 or so.....

Thanks for all your help!

Title: Re: Am I unusual? LOL
Post by Charlie on Dec 12^th, 2007, 11:17pm

You're not unusual. I was dumbfounded to find so many suffering from this horror. Sorry you are having such a time but here is what worked for me:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: Am I unusual? LOL
Post by BarbaraD on Dec 13^th, 2007, 9:06am

Coach,

One word about topamax.... (I've been on it since 99) and it's side effects...

I learned a long time ago to take the WHOLE dose at night before bedtime (regardless of what the directions say) and have NEVER had all the side effects that others experience. I've been up to 400mg at times (don't recommend that dosage to anyone). But for several years I was on 300mg and didn't have the side effects. I'm old and write a lot of post-it notes, but did that BEFORE I started taking the stuff.

Right now I'm on 100mg (just upped it to 200mg cause I'm in a high cycle), but I take the whole dose at night. If you have any side effects (the dopey feeling) you sleep it off.

I couldn't take the verap because of the BP either. My pressure dropped so low that the doc got scared. Lithium never worked for me. Topamax has been my lifesaver over the years. Hope it works for you.

My doc started me on 75 and uppped it a week later to 150mg. My headaches stopped almost immediately (back in 99). I've been on it ever since (except when I thought I could go med free -- won't try that again for a LONG time). I still shadow and have "high cycles" but stay pretty well under control.

Hugs BD

Title: Re: Am I unusual? LOL
Post by Guiseppi on Dec 13^th, 2007, 4:07pm

Don't let the "possible" side effects of lithium scare you off! I've been in law enforcement 27 years so I'm limited in the medications I can use and still work. I refused lithium for 10 years because in my line of work lithium is automatically associated with the "loony bin."

It has turned out to be my silver bullet. I'm episodic, usually 2X a year, 8-12 week cycles. Lithium is my only preventative medication...(after a 2 week prednisone taper to get the lithium built up.) I'm 47, male, weigh about 190 and take 1200 mg a day of lithium while on cycle. Other then peeing a lot the first 10 days or so, and a little lethargy the first 2 weeks, I can't even tell I'm on it. If your current regimen doesn't work out it's certainly worth a shot!!!

Guiseppi

Title: Re: Am I unusual? LOL
Post by Pinkfloyd on Dec 13^th, 2007, 10:09pm

on 12/12/07 at 15:51:41, BaseballCoach wrote:

My BP was 100/70 and he's worried I will pass out. Said after 7 days I can work my way up to 120.

1. That's a pretty low dose. To give it a fair try, it's worth it to take the time to get up to a therapeutic dose which for most people, as they've said, is much higher.

2. Whenever my blood pressure gets too low, I have a prescription for 3 of jonny's posts, per day, for a week. Get's me right back up to where it should be. ;-)

3. I was getting hit once while coaching 3rd. While I was rubbing and scratching the pain, I ended up giving what looked like, a sign for a bunt to my clean up hitter and a steal sign to the kid on 2nd. Perfect bunt and the runner scored from 2nd. ;;D
It's officially been called the cluster-bunt ever since, and I use it often.

Bobw

Title: Re: Am I unusual? LOL
Post by BaseballCoach on Dec 13^th, 2007, 11:04pm

Pinkfloyd...

That is one of the funniest stories I've heard in a while....Only a cluster coach could truly appreciate that ...Thanks so much.....

I actually did get one last year...Was calling pitches....was out of trex and it hit....I didn't know what to do....had to get assistant to call for 2 innings...I went down in the corner of the park....got on all fours and was banging my head like crazy....had parents coming up asking what they could do....I finally got up and ran about a half mile on the street behind the fence, I know they really thought I was crazy then.

Finally an assistant principal (who has migraines) brought a trex nasal spray but it was about too late. I took it....Then my father walked up with a 10 mg hyrdocodone (I chewed it up).....went to the truck and cried like a baby for about 10 more minutes...came out and coached the last 3 innings like nothing ever happened....It was almost comical after the fact....

I think this one instance is the main reason i will never be caught coaching or teaching without an imitrex again or an ER nearby....It's just not possible....

Title: Re: Am I unusual? LOL
Post by Chappy on Dec 14^th, 2007, 6:21am

Mine started 8 years ago, and after 5 years of head scratching, my doctor referred me to a pain specialist who put me on narcotics. Morphine and Vicodin worked great for a year or so, until they put me into chronic CH, where I've been for about 18 to 24 months. Now I get 2 or 3 during the day starting just after I wake up, lasting 2 or 3 hours each, with a one-hour break in between, and then the big one every night. I've read that clusters aren't supposed to go past 180 minutes, but mine go from 7 or 8 pm until 1 or 2 am, but they're not above a 6 or 7 on the kp scale for more than a few hours so maybe that counts.

Topomax was the first and only thing that ever really helped. It actually killed the headaches for a few days when I first started it, then they started up again but seemed to hit a lower intensity. Doubling the dose to 200mg lowered the intensity again, so now I get the headaches just like before, but they don't usually make me do the dance, and rarely make me cry.

I was just diagnosed with chronic CH last thursday (it only takes 5 months and $25k at Mayo if you're curious), and so far 300mg of Indomethicin hasn't helped. 240mg Verapamil doesn't seem to help either. Once I went chronic, my bp started to shoot through the roof, and docs loaded me with bp meds to no avail (so far), though my bp is fine when the pain's gone. After the CH diagnosis, the neuro gave me Zomeg nasal spray, and I had my first one Tuesday night, and Wow! I had my first night without a headache in two years, and the headache didn't come back until tonight. I'll be snorting another $50 up my nose tomorrow morning, for sure! I'd take one tonight, but after that last one I woke up every hour for the next two nights, so I figure I'll wait these last few shadows out until I fall asleep.

I don't know why he gave me Zomeg, since Imitrex seems to be the drug of choice around here. It worked with the headache, but I still had constant shadows until the headaches came back. Do you all still get shadows with the Imitrex?

Title: Re: Am I unusual? LOL
Post by Bob_Johnson on Dec 14^th, 2007, 8:32am

Wish you would read Rozen's article (one of the links posted for you) about the high doses of meds which cluster folks often have to use--and the relative safety in doing so. I'm concerned about you making judgments re. side effects if you don't have medical knowledge to make such evaluations: you deprive yourself. Both Lithium and Verapamil are safe--when you use them correctly.
--------
I posted this message on a chat group for dog owners (Vizsla). The issues are the same whether we are talking about animals or humans--so a little translating of words will make it understandable. The core idea: side effects are not an absolute--yes/no--issue. We must always balance potential risk with potential benefit. I'm concerned with the tendency to present comments about medicine side effects in terms which frighten folks away from trying meds which might be of benefit.
--------------------------------------------------------------------------------
This question about side effects from food (allergies) or medications pops up regularly. The problem is, we don't ask the correct questions. The issues are:

1. What is the rate or chance or probability that any particular side effect will develop?

Without information it's easy to assume that the list of side effects is a statement of what will happen if the med is used. In fact, side effects are reported in human medicine/vet literature as a rate of occurrence ranging from less than one percent and ranging upward.

It's important to ask the Vet for two pieces of information: what are the side effects?; what is the rate or chance that a particular effect will occur? Without information it's impossible to make a good judgment about using or not.

2. How serious are the side effects compared to the condition for which the med is being used?

We have a member whose Vizsla would have died from a systemic fungal infection without a med. The problem is that this med has serious and frequent side effects--but there were no treatment options.

3. How important is my judgment about the risk of side effects vs. the benefit of using this med?

Bottom line: A list of side effects is a statement of POSSIBILITIES. It is not a PREDICTION of what will occur. Wisdom calls for knowing both the risk and asking the vet what to look for, i.e., symptoms of side effects.

Bob Johnson