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(Message started by: Dunnie on Aug 16^th, 2004, 6:47am)

Title: Clusterheadaches
Post by Dunnie on Aug 16^th, 2004, 6:47am

Hello Everyone

I have a returned bout with CH. My first was close to 5 years ago where I kind of remember it lasting about 6 - 8 weeks. I am now in my 4th week with this second bout. Last Thursday was the worst, I believe I was at 8 or 9 on the Kip scale of pain. Since it has been so long since my last attack, I am trying to remember what the doctors told me back then. During the first I was living in the US. I now live in Naples, Italy. Anyway my question is should I take the Imtrex injections when I feel the CH coming on or should I wait and see if it will be on of those that makes me dance or just take that damn beast that it is around the house for a walk? Imtrex is the only medicine that I take for the headaches and I try to make it last. What do you guys think?

THANK YOU, Dunnie

Title: Re: Clusterheadaches
Post by Fatcat on Aug 16^th, 2004, 7:57am

Hello, and sadly welcome. Sorry to hear that you're back in cycle. :(

With my attacks, I tend to wait until I'm certain that it's not just a heavy shadow before I use a jab. It works for me. Some people take a jab at the first sign.

Naples eh? I stayed in Sorrento and Ravello when I was a kid. It's lovely there!

Title: Re: Clusterheadaches
Post by don on Aug 16^th, 2004, 9:42am

Quote:

should I take the Imtrex injections when I feel the CH coming on or should I wait and see if it will be on of those that makes me dance or just take that damn beast that it is around the house for a walk?

Your choice really. If you want to make it last try doing 1/2 or 1/3 the dosage. That would be 2 or 4 Mg rather tan the full 6. Smaller dosages seem to work for most.

Title: Re: Clusterheadaches
Post by Dunnie on Aug 16^th, 2004, 10:36am

I hate this..........It makes me scared because I don't know what it will bring next. How people have this damn freaken thing for years at a time, I don't know. All I want is out and away from the pain.
One thing is good here and that is that there are others like me and unhard to beleive even worst than me. I feel sympathy for all of us in this stupid, life wasting, energy draining affliction. The Imetrix makes me feel like someone is pulling a warm blanket over my heat starting at my neck which actually fewels like it is burning and draging the blanket over the top of my head. But the after a while the pain goes away and then pray and go to sleep. Thank God that this site exist!!!!!!!!

Title: Re: Clusterheadaches
Post by Gator on Aug 16^th, 2004, 10:52am

I suppose it would depend on how well you tolerate pain and how well you can give yourself an injection when you're in extreme pain.

I have never used imitrex, so I don't know myself how I would do with the injections. I use the Zomig NS. I usually wait it out with O2 intil I see if it's gonna be a big one or not. Like you, I don't want to "waste" a dose on a small hit now and not have it for the big one later.

Doesn't it seem pitiful that we would call easing our suffering a waste when the pain is "lower," because meds are too damned expensive to use.

Good luck and PFDAN to you!

Gator

Title: Re: Clusterheadaches
Post by don on Aug 16^th, 2004, 11:28am

I like that warm blanket feeling.

I know relief is only seconds away.

Title: Re: Clusterheadaches
Post by thebbz on Aug 16^th, 2004, 11:08pm

I always hesitate, CH sucks so does the Imitrex , what my final desision is based on is pain. When the shot feels good compared to the beast,,,,hey it's time. Good luck and of course the supply is a factor,,,, try to stretch it out. BB

Title: Re: Clusterheadaches
Post by ZAIRA on Aug 27^th, 2004, 5:13pm

on 08/16/04 at 06:47:57, Dunnie wrote:

CH really sucks, eh? >:( ;;D

First of all I think you have to see your neuro. Imigran is not a cure!

My experience: I have so hard attacks that I can't wait to see if my attack is on those that makes me dance... they always make me dance... so 99% I take already the Trex. You are Italian, well..... ;;D there is OUCH Italia MB, if you have some questions you can write there..... just you know there is a Neurologist (dal Centro Cefalee di Firenze ;)) who can answer you! He is a veeeeeeery nice and human person!

All the best to you, Zaira (from Venice ;;D ;;D ;;D ;;D ;;D ;;D)

Title: Re: Clusterheadaches
Post by Luciano on Aug 28^th, 2004, 6:01am

Ciao Dunnie!

Sorry to know you're in cycle, hope it will end soon.

Please take a look at the OUCH-Italia board: www.grappolaiuto.it and of course the website: www.ouchitalia.it

Take care!

Luciano.

Title: Re: Clusterheadaches
Post by ex_pat_asia on Aug 29^th, 2004, 4:21am

on 08/16/04 at 06:47:57, Dunnie wrote:

Imtrex is the only medicine that I take for the headaches and I try to make it last. What do you guys think?

Dunnie, Sorry to read that after a nice long remission you are back in a cycle. It can be very disheartening as it was in my own recent experience. I had been pain free for four years and had thought that I had shaken them since I am 58 years old. (The literature suggests that clusters can disappear in some patients of advanced age.)

Anyway, I wanted to comment on your exclusive use of trex. There is nothing wrong with trex, its a gift to many of us, except that it is terribly expensive, and it is limited as to dosing. I think you need to follow the links here to info about other meds for aborting the headache, especially read about oxygen which, in at least one study, had 80% efficacy for clusterheads. If it works for you it may reduce the amount of trex you need to take, always welcome in the wallet as Oxygen is relatively cheap and can be even cheaper if you use welder's oxygen which is safe to use if provided by a commercial gases supplier.

Here is my own protocol for using Trex (when I have it). I use it strictly for attacks that occur at an nconvenient time and I use it early (at the first sign). Like another poster, I seldom have attacks that slow down or are mild. If left unchecked mine go all the way to whatever KIP level in me seems almost unbearable. I also get very noticeable eye droop, face flushing, nasal running and eye tearing. These are not symptoms I can disguise if I am in a meeting, or some other public place. That is when I grab for the jab. So for me, it is incidental to the circumstances.

If I am in my home or office I grab for the Oxygen. It is very close to 100% effective for me, it is inexpensive, it is natural, and my body tolerates it well (imagine that!). The trex is a bit of a druggy experience for many of us...hair raises, uncomfortable "rush" feeling, breathiness, etc. Oxygen is a calming, almost meditative experience for me. I have gone way past the abort, breathing it unneccesarily and in a "zone". I have to keep somewhat careful so as not to waste a tank.

One more point but, per favore, nolte bene:
Cluster headache should be approached with a two pronged strategy. I am referring to the long list of drugs used to prevent the attacks (or at leasy ameliorate the number and severity of them). There is a wealth of that info here, and people who are experienced in using them. I urge you to consider reading avidly until you get some ideas on how you might start a "prophylactic" strategy, as well as bolstering your "abortive" strategy with Oxygen or considering one of the nasal sprays.

My personal prophylactic "cocktail" is:
Melatonin 3 MG 1 hour before bedtime
Xanax .5 MG one hour before bedtim
Cafergot, one tablet 3X per day
Steroid Taper
Verapamil 480 mg per day

This has been very succesful in taking my cycle down to an occasional attack from experiencing 7 - 8 attacks per day.

I recommend that you visit the following site which I think is excellent for a broad range of info about treatments:
http://www.headachedrugs.com/archives/preventivemeds.html

Piacere and best wishes for pain free days and nights (PFDAN)

Title: Re: Clusterheadaches
Post by Dunnie on Aug 30^th, 2004, 5:20am

Thanks to Zaria, Luciano and ex_pat_asia for your thoughts and sharing experience.
Zaira and Luciano: I am living in Italy for six years now and I love it, pero parlo italiano. I will check out the web site that you indicated. Zaira, nice horses. molto bello. Ex_pat I am scared to try that cocktail, beleive it or not I have a hard time doing an injection and most times the pain level has to climb to where my vision in the affected side of my head is blurry.

I have another question. My pattern is changing it seems. For example the attacks stayed away for 4 days last week. I ventured out and had 3 glasses of wine on the fifth day and bamn I got it within 4 hours with a granddaddy attack. This weekend they were not nearly as painful and only lasted 10 to 15 minutes. I did not even take the imitrex or imigran as it is called in Italy. Does anyone think I am coming out of the cycle. My fear is that I am starting a new cycle, which if that is true then .......oh shit, oh shit.
I do feel uncomfortable asking questions like this when so many of you have this curse almost every day with no end in site. I would postpone a remission if all of you would have one also. I love life and people. I feel deeply for all of us who have this burden to carry.

Title: Re: Clusterheadaches
Post by eyhavhedaches on Sep 1^st, 2004, 12:44pm

dunnie.... never never drink during your cycle..... especially wine! Alcohol will worsen the severity of your ch attacks.

Title: Re: Clusterheadaches
Post by Dunnie on Sep 2^nd, 2004, 2:48am

on 09/01/04 at 12:44:06, eyhavhedaches wrote:

dunnie.... never never drink during your cycle..... especially wine! Alcohol will worsen the severity of your ch attacks.

I know that now but Thanks. I like wine with all my meals even lunch but especially with dinner and most especially on Sunday at lunch. I stopped. I want to sneak a beer with a pizza sometime but I know there is not sneaking with that beast around.
My attacks now are 10 to 15 minutes about four times a day. It is a big change from 45 minutes to 75 minutes with taking a n injection. The pian now does not go up as high,it's still there but now as severe. I don't know why. I hope I am not going int chronic stage. All in all I have a lot tobe thankful for when I read about some of the others and their problems. I hate this shit, I really hate this shit.

Title: Re: Clusterheadaches
Post by Dunnie on Sep 2^nd, 2004, 8:07am

How do you know when a cycle is starting or finishing, besides the obvious lack or presence of pain?

Attacks can be pretty short if you have the medicine to stop them. If you don't take the medicine and they last 45 minutes to 1 1/2 hours and then suside by themselves. But what if attacks now come four times as often as beforew but they only last anywhere from 5 to 15 minutes???? And on top of it they do not reach the same pain level as when they lasted much longer.
Does anybody know or have some understanding of this stuff? I know everybodys system is different and the beast affect on all of us varies but there musy be some common conditions.
I guess I really need to get plugged into a Doctor for these answers.
Thank You Dunnie

Title: Re: Clusterheadaches
Post by Suzanne0929 on Sep 2^nd, 2004, 1:56pm

I feel that I am out of the cycle when I have been headache free... cluster as well as the lingering residuals for at least a week.

Title: Re: Clusterheadaches
Post by Kris_in_SJ on Sep 2^nd, 2004, 8:46pm

Like you said, Dunnie ... everyone is different.

For me, a cycle is starting when I get a HA every other or every third night (always at the same time). Before I know it, I'm having one every night, and then 2 time/day. If I didn't start right away on Verapamil and Prednisone (usually after the third hit I know I'm in cycle), I don't know how frequent or severe they would become. Imitrex is my savior for aborting, but the Verapamil makes my cycles shorter and more easy to bear.

I feel really fortunate to be episodic - so far only every 3-4 years. It has given me plenty of time to research and talk to my doc about "next time."

Follow the Italian OUCH links - finding a good neurologist there can only help you.

Hugs,

Kris

Title: Re: Clusterheadaches
Post by Kris_in_SJ on Sep 2^nd, 2004, 8:50pm

Hi again,

I forgot to say that when a cycle is ending, it happens the same way it began - HA's gradually decrease in number and severity (though shadows hang around a long time).

As said above - stay away from wine until you're sure you're done!

Kris

Title: Re: Clusterheadaches
Post by BlueMeanie on Sep 2^nd, 2004, 9:14pm

Hello Dunnie,

Welcome and sorry to hear the beast is back.

Read about the 02 info. It doesn't work as often as Trex, but it saves lots of money and you won't need as much Trex if the 02 works for you.

Read about spliting the Trex in 1/2. You should get the same relief with 1/2 shot as you do with a full one.

I usually wait until it gets almost unbearable (but i still have enough patience to inject) before using the Trex. If I take it too soon or too late, it doesn't work as often.

You can't trust that your cycle has ended until a least a week with no shadows or attacks at all. The ultimate test when you think your cycle has ended is drink wine or beer. If you don't get a CH attack, your cycle has probably ended. At least that's how it works for me. Of course everyone here is a little different.

Take care. Hope your cycle ends soon.