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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New Member Lifetime Cluster
        
(Message started by: stevec on Feb 19^th, 2007, 12:06am)

Title: New Member Lifetime Cluster
Post by stevec on Feb 19^th, 2007, 12:06am

Hi, everyone. I’m new to the group but not to cluster headaches. If you don’t want to read about me, just skip the next long paragraph and say, “Hi!” It won’t hurt my feelings. I promise…

Anyway, I’m 50 yrs. old and have had enjoyed a lifetime of episodic cluster headaches since about age 28. I have most certainly enjoyed the pain-free part of my life, and that has of course been the vast majority of it. In retrospect I can see that I have always had classic cluster headaches, but it took many years and several episodes before the correct diagnosis was made. It becomes somewhat ironic when you understand that I’m an MD, and I got my first cluster episode during my residency, but an accurate diagnosis and hence effective therapy had to wait for many years. I initially tried a variety of ineffective medications many of which had significant side effects. As each cluster period passed, I incorrectly assumed that the medications had worked. The pain-free periods typical of episodic cluster then ensued usually for one or more years. The headaches were happily forgotten and deemed to be a part of my medical past until the next cluster period came crashing down only to repeat the process of inaccurate diagnosis and inappropriate therapy. After several years and several clusters, I finally did my own research and realized that I suffered from fairly classic episodic clusters. In years past, I would treat acute flare-ups with lithium and verapamil for prophylaxis during the cluster. I would treat the break through headache with a panic trip to the hospital for high flow oxygen inhalation. Imitrex pills were also used with minimal effect. Many nights were spent in cluster “hell” although these words are testament to my ultimate survival ;) I finished my last cluster 17 months ago ( I won’t bore you with the weeks and days…). The current one started 2 weeks ago. My current treatment plan is a little more sophisticated and regimented (No, I don’t treat myself. I see a neurologist headache specialist for that…) I start off on a short course of dexamethasone to shut off the clusters briefly. Sort of like a silver bullet…if only it were permanent. Then I start up the topamax. I slowly increase the dosage trying to avoid the paresthesias and the other side effects. I’m currently at 200 mgs. I then tapered off of the dex and then WHAM! The clusters attacked back with a vengeance. My wife thinks I’m crazy, but it’s almost like the things have a personality and quite simply are not going to be cheated out of their fun. I’ve never had more than 2 per day, but yesterday right after the steroid had completely worn off, I had 4 clusters in a 24 hour period. I thought I was going to die, and actually, at the time, dying wouldn’t have been all that bad. Thank God for injectible Imitrex vials. It’s about the only thing that stops them for me. Fortunately, I can inject 1/3 of a vial-that’s only 2mg with a tuberculin syringe through a 27gauge needle subcutaneously, and it usually does the trick within about 10-15 minutes at least until the next one hits. Anyway, I called my neurologist who started me on yet another short course of dexamethasone, so it should shut them down for another week or so. I’m sure dreading having to taper the steroid later on this week, but I can’t stay on it for too much longer. Oh well, in a few weeks maybe it’ll be over, and I’ll be pain-free for another year and a half.

OK, narrative is over. I do have quite a few years of personal experience with cluster headaches as well as quite a bit of experience with different treatment options, and I’ll be happy to discuss this with the members of this group.

Title: Re: New Member Lifetime Cluster
Post by BB on Feb 19^th, 2007, 12:19am

Welcome and thank you for comming here and for sharing your story and experience.

Please tell us more about the characteristics of your CH and about the medications you have tried.

Painfree wishes to you.

Annette

Title: Re: New Member Lifetime Cluster
Post by georgej on Feb 19^th, 2007, 1:25am

Welcome aboard, Steve.

Very happy you've joined us, and looking forward to your insights and perspectives on treatments and therapies.

Best wishes,

George

Title: Re: New Member Lifetime Cluster
Post by duckie on Feb 19^th, 2007, 4:29am

Hi Steve, I read your story and wanted to say hello!! PF vibes to you, Lii

Title: Re: New Member Lifetime Cluster
Post by Mattrf on Feb 19^th, 2007, 2:12pm

Hi Steve.
Wow, you know it is always interesting to find a doctor that suffers with us and to see them have just as a difficult time in dealing with the beast and finding the right medications to fight it with.
All I can say is pull up a chair and let everyone here help you and try and get your wife to come on the board as well to get support for herself and to also better understand what you are going through.

PF wishes to you.

Matt

Title: Re: New Member Lifetime Cluster
Post by stevec on Feb 19^th, 2007, 3:50pm

Thanks for all of the comments and concern, folks. I really do appreciate the support. In my hometown of 25,000 people, I’ve only met one other person who suffers from CH’s, so it’s nice to find others who understand.

Annette, regarding your question about the characteristics of my clusters. I am blessed with pain free periods varying from about 1 year to upwards of 2 years or more. My last pain free period was 17 months. The cluster periods last from 4-12 weeks on average. I typically have 1-2 clusters a day if I am not on prophylactic therapy and about 1 cluster every 2 days when I am. My clusters are atypical in that they will usually last for about 3 or more hours unless I treat them with Imitrex injections or oxygen inhalation. (You should see me after a 3 hour cluster…It’s only happened 4 or 5 times in my life, but the occasions are actually quite memorable…) and, they are always in the right eye…always in the right eye…always in the right eye….

George, regarding my therapies for cluster, let me just tell you about my current management as recommended to me by my neurologist. Keep in mind, this is the therapy that he recommends for me. It will obviously not necessarily be right for others with different medical histories. At the start of a new cluster, he starts me on a short course of dexamathasone, usually 8mg IM to shut down the headaches immediately followed by 8 mg po the next 2 days. Then he tapers me with 4 mg po for each of the next four days. During this time, he is gradually increasing my dosage of topamax getting me to 75mg twice a day while encouraging me to take multiple Tums during the day to counteract the paresthesias that are side effects of the topamax. Unfortunately for me, the clusters broke through after tapering the steroid, and I had to go back on them for another short course and increase the topamax to 100mg twice a day which is where I am now. He assures me that the topamax often takes many days to reach a therapeutic dose and that I should remain calm and give it time to work. I hope he is right. I’ll find out in a few days when the dex wears off.

If anyone wants to know my method for using injectable Imitrex most efficiently, let me know and I’ll post it in another message. This one is getting too long. Thanks again for the support and understanding. Good luck to you all.

Steve…

Title: Re: New Member Lifetime Cluster
Post by Guiseppi on Feb 19^th, 2007, 8:37pm

Have you ever tried lithium as a preventative? I've been episodic for about 28 years. 1200 mg of lithium a day while on cycle works to block about 90% of the attacks. 02 with oral cafergot and an occasional imitrex jab handle the rest for me. Welcome to the board. It's awesome to have another MD to help us spread the news on these damned things!

Guiseppi

Title: Re: New Member Lifetime Cluster
Post by stevec on Feb 19^th, 2007, 9:17pm

Guiseppi,
Actually, I did try Lithium and Verapamil for many years with quite a bit of success. That, coupled with high flow rate oxygen therapy and Imitrex pills and shots for breakthrough clusters was my most successful therapy for most of my life. My local neurologist who placed me on that therapy committed suicide (go figure...he didn't even have CH's). I was also getting a little concerned about the toxicity of lithium, not to mention the fact that everyone who found out that I was on lithium naturally assumed that I was manic-depressive. Plus, I really didn't like the way I felt on Verapamil. The final straw was when it quit working quite so well, and I had a particularly nasty and nonresponsive cluster. So, I sought out another neurologist, and he was surprised that I had never tried topomax. Actually, I was surprised, too, since it is commonly used to treat CH. So I'm trying to get through this period as I have discussed. I wish you the best of luck.

Steve...

Title: Re: New Member Lifetime Cluster
Post by kcopelin on Feb 20^th, 2007, 1:15am

Welcome home Steve!

PFDAN
kathy

Title: Re: New Member Lifetime Cluster
Post by LeLimey on Feb 20^th, 2007, 4:11am

Hello Steve its nice to meet you - can never have to many Texans around here! ;) Some of my favourite people in the whole world come from Texas and I love it.

Sounds like you're going to be a great addition to our family here - welcome!
Helen

Title: Re: New Member Lifetime Cluster
Post by Lobster on Feb 20^th, 2007, 10:17am

Good story Steve.

I too get 3 doses out of each Trex vial. Typically I need a 'followup' dose about 1 out of 5 or 6 times.

Topa and I have a love/hate relationship. It tends to work for me, not entirely but it does seem to take the edge off the hits, but you know the story with the side affects... mental slowing and such. Hate it.

My primary preventatives today are the alternative treatments. Since starting them in 2004 I have managed to terminate at least 3 episodes while they were still just shadows.

Title: Re: New Member Lifetime Cluster
Post by stevec on Feb 20^th, 2007, 8:02pm

Yeah, Lobster,
I know all about the mental slowing associated with the Topamax. Sometimes I feel like my brain is working through molassas. The word that I want to say just won't quite materialize. Plus, my feet and hands always seem to tingle. And there are other side effects. I hate the stuff, too. But, if it keeps the CH's at bay for a few weeks, I guess it's worth it. What are the alternative therapies you hinted about. I may be a doctor, but I'm open to any suggestions that you might have found useful for these things.

Title: Re: New Member Lifetime Cluster
Post by Lobster on Feb 20^th, 2007, 11:31pm

It shook me up a little bit to know that Topa was messing with my brain chemistry enough to make common beverages taste completely foreign. Kinda like waking up one day and seeing a green sun.

Alternatives... personally... as of late... an excerpt from this thread...
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1170305774

on 02/16/07 at 15:05:11, Lobster wrote:

I never tried to break an established cycle with seeds.
Did it successfully with the stronger stuff, but not seeds.

My use of seeds is purely as a preventative. They might work, or it might be purely coincidental. That was my 3rd cycle-free January. Before alternatives my longest break was 1 January.

I do 25-30 RC seeds ground up in a pepper mill whenever I feel a shadow... and I mean that evening... no waiting until tomorrow to see if it really was a CH shadow. Sometimes I soak them, sometimes I do not. As I indicated, I feel practically nothing when I take them. And they do taste like a shit sandwich... nasty.

Lots of threads on here about such alternatives, mate. You can also glance at http://www.clusterbusters.com/
and here... http://health.groups.yahoo.com/group/TheClusterBusters/

Title: Re: New Member Lifetime Cluster
Post by TonyG1 on Feb 21^st, 2007, 7:31pm

Hey Steve -- Sorry you're in another cycle !! I did read you story (thanks for sharing) -- welcome home !

I understand exactly what you are saying.

"...My wife thinks I’m crazy, but it’s almost like the things have a personality and quite simply are not going to be cheated out of their fun. ..."

Our shared beast is a tricky bas%ard! :(

Title: Re: New Member Lifetime Cluster
Post by stevec on Feb 24^th, 2007, 2:07pm

Oh man, I can barely type.. they are coming fast and furious now. I guess its just my time of year right now. Time for the needle, I guess. O2 isnt working too well and steroid dose has been tapered too low to be of much use. Wish me luck...

Title: Re: New Member Lifetime Cluster
Post by thebbz on Feb 24^th, 2007, 2:29pm

Dont forget to breathe there Steve...
Sorry your getting hit.
all the best
jb

Title: Re: New Member Lifetime Cluster
Post by stevec on Feb 24^th, 2007, 5:13pm

Thanks, man. I'm fine now. Managed even without the needle. I appreciate the support and the PM's. Ya'll have a nice day and night.

Title: Re: New Member Lifetime Cluster
Post by E-Double on Feb 24^th, 2007, 10:23pm

I personally had BAD times on Topomax.
I had the best luck with verapamil (standard release) and lithium though I developed toxicity and decided that I was through with meds.
I have been med free for almost 1 yr.
I am chronic since 2004 (nearly 3 yrs) and deal a lot better being completely med free.
I only use O2 with exception to the occasional jab of trex if I get hit when lecturing.

So very nice to have a doc on board and so sorry that you have to deal with the faulty noggin.

What do you practice (medicine not foul shots or slap shots)? ;)

Best,

E

Title: Re: New Member Lifetime Cluster
Post by stevec on Feb 25^th, 2007, 12:55am

I practice diagnostic radiology as a profession. Cluster headaches are just a hobby...

Title: Re: New Member Lifetime Cluster
Post by nani on Feb 25^th, 2007, 6:01am

Hiya Steve. Welcome. You may want to have a look at www.clustermasx.com It was invented by a CH sufferer and gets rave reviews here. I only had about a 50% success rate with oxygen before it, now I'd say it's 100% effective for me.
As far as treatments, I also found that alternatives have been the most effective for me. Both kudzu and clusterbsuter treatments have helped more than the dozens of standard meds I've tried. You can find lots of kudzu info on the Medications board.
I hope your episode ends soon, and you stick around anyway.
pain free wishes, nani

Title: Re: New Member Lifetime Cluster
Post by jlk on Feb 25^th, 2007, 10:56pm

Hi Steve! I tried the topomax and had to stop because I'm an attorney and I realized in the courtroom that it was affecting my brain. The hearing went fine but I called my neurologist who said 'whoops, sorry, didn't I mention the cognititive effects?' So, I told her I actually needed off topomax.

I tried lithium and it didn't work at all. Nor did oxygen, verapamil, cafergot or all the other stuff that made me feel like a human guinea pig. Anyway, only imitrex works for me. However, if my neck is 'in', (I have a vertebrae at c-1 that pops out of place) I get far fewer headaches.

How do you handle work and clusters? Do you get sick more frequently than non-CH people you know? These are two issues that are still quite difficult for me.

Title: Re: New Member Lifetime Cluster
Post by stevec on Feb 26^th, 2007, 5:38pm

I'm taking some time off now until this episode is over. When it first hit, I had to reschedule an entire couple of days of patients. But, they understood. No one really wanted someone working on them who was having a cluster headache. I think these things are getting under control now. Hopefully, I'll be able to taper the meds and get my life back to normal. Thanks for the concern and support.

Title: Re: New Member Lifetime Cluster
Post by georgej on Feb 26^th, 2007, 6:55pm

on 02/26/07 at 17:38:59, stevec wrote:

Thanks for the concern and support.

Hope that this resolves for you quickly. I know very well how they can interfere with normal function--even if you're not dealing with a headache at the moment, you're worn out and drained from dealing with the last one or ten. I get hit almost exclusively at night, but I still end up staying away from work for several days in the middle of a cycle.

You're not new to being an episodic, though, so I know that you realize that this is a temporary situation that will finish when the cycle is ended. I can only extend my best wishes to you, and hopes for better days ahead.

As far as concern and support goes--it's the best of what people do here. There are people at CH.com who will do anything at all in their power to help another clusterhead. I have tremendous respect for them.

Best wishes,

George