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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Urgent advice needed - please respond
        
(Message started by: gills on May 1^st, 2004, 7:49am)

Title: Urgent advice needed - please respond
Post by gills on May 1^st, 2004, 7:49am

I am an eposodic cluster sufferer.

Got on to Imitrex injections 2 years ago - changed my life. Also take Verapamil.

Now going through a very bad cluster period.

10 weeks mainly kip 10, about 10 times a week. The odd day off.

Have recently been getting 4 or 5 per day, sometimes 4 hours apart. Injections have cost me about $3000 in last month and 1/2 but money is not the issue.

Only allowed to take 2 injections within 24 hours. Have been taking 3 within 24 hours but too scared to take the 4th and sometimes I need it.

Thinking about it - and take the risks what ever they are.

Any ideas anyone? Pain unbearable when I cannot take another injection for fear of overdose or do I just have it anyway??

Gills (for now)

Title: Re: Urgent advice needed - please respond
Post by purpleydog on May 1^st, 2004, 8:41am

Go to the ER or call your doc. I use to take 2 triptans at the same time when I was in cycle, because that is the only thing that worked.
at the time my doc was ok with it, but when I had to finally go to the ER and when I told them, they couldn't believe it. I am NOT telling you to do this, but ask your doctor, or neuro.

At least if you are at the ER if something should happen, you'll be in the right place. Also, I have called my doc outside of normal business hours, maybe try this?
Does O2 work for you?

purpleydog

purpleydog

Title: Re: Urgent advice needed - please respond
Post by Rock_Lobster on May 1^st, 2004, 8:49am

Are you using the autoinjector or vials/syringes?

If using the autoinjector, read the 'imitrex tip' on the left side. You can really stretch your trex that way, while not OD'ing on the stuff.

I use vials/syringes. .15ml works for me.
An autoinjector gives a full .5ml... massive overkill.

I have done up to a half-dozen .15ml doses in one day.

Note that some have pushed Glaxo toward making .2ml or .3ml injectors for CH'heads, since .2ml seems to work for just about all of us. I guess the logic is that .2ml would cost 2/5 as much as .5ml. Heh heh. Go out to drugstore.com... compare the price of Imitrex 25mg tabs to Imitrex 100mg tabs... the 100's are cheaper.

Good luck,
Rock

Title: Re: Urgent advice needed - please respond
Post by Rock_Lobster on May 1^st, 2004, 9:15am

I should have indicated in my previous post that I would not suggest doing a half-dozen full auto-injector doses in one day.

Rock

Title: Re: Urgent advice needed - please respond
Post by wsnyder on May 1^st, 2004, 9:17am

With my last cycle, which is finally gone two weeks now, the neuro as a result of my suggestion upped my verap. I only needed an increase of 120mg a day above the 480mg per day that I was taking and that significantly changed the attacks. Within a few days there were no more K10s and and the number of attacks during 24 hours markedly reduced. Perhaps this is a less risky direction to try.

And oh yeah ... good clusterheads can never really get too much O2. And it isn't very likely to hurt you either.

Bill

Title: Re: Urgent advice needed - please respond
Post by Sean_C on May 1^st, 2004, 9:59am

Gills,

Talk to your doc, tell him/her what you told us, it sounds to me like you need to try a different med. The same thing happened to me with sansert, which worked great for awhile. Now I do the Prednisone taper. I'm sure I'll have to do somethingelse sooner than later.

Give 02 a try, helps for most Ch sufferers.

Sean

Title: Re: Urgent advice needed - please respond
Post by Rock_Lobster on May 1^st, 2004, 10:32am

Good points. What preventatives are you on?
10 kip10's weekly would really really suck.

rock

Title: Re: Urgent advice needed - please respond
Post by pubgirl on May 1^st, 2004, 12:12pm

Gills

Sounds like your prevention isn't preventing and needs attention r.e. dosage or drug/drug combination.

Also to underline the 02 option, you can use it as many times as you like and frankly, for multiple attacks, it is the main healthy abortive option.

Good luck

Wendy

Title: Re: Urgent advice needed - please respond
Post by gills on May 1^st, 2004, 6:47pm

Thanks for your suggestions.

Rock Lobster

I use auto injector. How do you use vials/syringes and where do you get the liquid from? Tablets do not work for me. Use verap for preventative.

Purpleydog

Am seeing neuro tomorrow and will demand O2. He wasnt keen on giving me oxygen before becaue I smoke (oxygen explodes) and he said it might not work anyway. Never had it.

Wsnyder

I am taking 240mg verap a day but quite often forget the afternnon one which means sometimes only 160 mg day. Perhaps this is part of my problem.

Gills

Title: Re: Urgent advice needed - please respond
Post by Rock_Lobster on May 1^st, 2004, 7:17pm

on 05/01/04 at 18:47:20, gills wrote:

I use auto injector. How do you use vials/syringes and where do you get the liquid from?

The vials/syringes are the same as you would see in the doctors office. A small vial of the Trex... a syringe... stick the needle in the vial... filler up... needle wherever you prefer (fatty tissue... no vein)... toss the needle.

Ask the doc to prescribe .5ml vials + syringes instead of the autoinjectors. That way you control the dosage.
If he/she is not up for that, check out the 'imitrex tip' to the left.
Supposedly each .5ml vial is one dose, same as an injector. I find each vial good for 3-4 effective doses.

Go to www.drugstore.com. Look up Imitrex. There they are... vials.

Also get o2. It works for many people here as an abort. Affordable and you cannot OD on it. If the doc will not write a script for it then do a search here on how to rig up a kit with welders o2. Even cheaper... same o2.

To break my last episode I did 720mg Verapamil & 125mg Topamax daily. 240mg Verap is kinda light for CH treatment, imo.

Good luck,
Rock

Title: Re: Urgent advice needed - please respond
Post by HypnoticFreddy on May 1^st, 2004, 8:06pm

My pharmacy claims to know nothing of imitrex vials. Who knows. What someone was explaining in a previous post is the imitrex tip, which is a link on the left side of the website.

It teaches you how to use the normal stat dose pen injectors and refills, and how to manipulate the package so that you can extract a small portion of the Imitrex from each unit. That way instead of using the full 0.5 ml volume of imitrex each time you use the pen, you can get like 2 or 3 mini-doses out of each one.

I have not tried this yet. If oxygen wouldn't work, I would most certainly try it.

-Scott