Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello all - I'm new!
        
(Message started by: Melissa70 on Apr 13^th, 2004, 6:59pm)

Title: Hello all - I'm new!
Post by Melissa70 on Apr 13^th, 2004, 6:59pm

Hello everyone. I had my first cycle of cluster headaches almost two years ago. I was diagnosed by my family doctor and given amitriptyline to take throughout the cycles and also Midrin and Maxalt. I have had six cycles in two years, the last one started February 20 and ended March 10. That one was HORRIBLE! They start out with a few attacks the first few days, all at the same time every day, then gradually increase until the "peak" day - when I have them pretty much constantly for 12-15 hours, with only about 15 minutes break in between.

I have an appointment with a neurologist on Thursday. I'm out of Maxalt, the Midrin didn't really do anything the last time, and the amitriptyline makes me feel so bad....I feel like its time to try something different.

I've been reading the posts and have read most of the info on this site. The last cycle, the water tip really helped me a lot! I haven't tried the ice, but I'm thinking I might if (or when) it happens again. I'm interested to talk to the neurologist about oxygen. It seems a lot of people are getting relief from that.

My quick question - what should I expect at the neuro Thursday? He is a headache specialist, so I'm hoping I have found a good one!

I am so sorry to know that so many other people out there suffer with this misery. Thanks for letting me join in the support. :)

Title: Re: Hello all - I'm new!
Post by FZfan on Apr 13^th, 2004, 7:22pm

Welcome Melissa70. Sorry to hear you are suffering with CH, but you have found the right place to get help with dealing with it. You say you've read lots of posts. That and reading up on the info available under the buttons to your left and at the OUCH site is probably the best thing you can do right now.

Sounds like you're out of cycle right now? If so, your upcoming visit to the neuro will be a great opportunity to begin planning for the next one. I can't recommend highly enough getting a script for o2 as part of that plan. I would expect your neuro to know this, or if he is unfamiliar with o2, print out the info available on it here and take it with you. Make sure you get a high flow regulator and a non-rebreather mask. Be prepared next time the beast decides to take you dancing.

I'm episodic with relatively short cycles, so I don't try/use preventatives, but judging by posts here, it seems verapamil is usually tried first, but please, continue reading. This beast is a wiley one and can be quite tricky, allowing certain meds or med combinations to work for some but not for others. The more you know, the more you can participate in your treatment.

During my last cycle I got by on o2 only, but another thing I would expect a knowledgable neuro to discuss with you is imitrex injections. Lots of folks swear by these also.

Good luck in your quest to smother this beast, and please keep us posted on how you're doing.

Welcome home.

Title: Re: Hello all - I'm new!
Post by HypnoticFreddy on Apr 13^th, 2004, 7:36pm

Hi Melissa,

Sorry you have to meet people this way, but anyways, it is nice to meet people who suffer from such a weird condition like this.

When meeting a neuro, slow down. They need to ask a lot of questions, because so many headaches exist and they need to gather as much data they can. Be prepared and not worried to be sent to get an MRI or a cat scan. It turns out nothing.

In my 7 years of sufferring from these beasts, I began to collect information. Treatment, characteristics, triggers, etc.

I now have a binder with a wealth of information.

You should have at least some important informtation with you. Most importantly know that there are three treaments; 1) preventatives, 2) transitionals, and 3)abortives.

preventatives include (not limited too) Verapamil, lithium, methylsergide, and Topamax. Transitionals include Prednisone and other steroids. Abortives are Imitrex subcuteneous injections and other triptans like Zomig, Frova and Amerge. However, due to the high costs of the triptans, oxygen therapy (done properly, with the correct equipment) is a VERY effective abortive treament.

Rock_Lobster recently posted a website that I highly recommend you read and print-out:

http://www.future-drugs.com/admin/articlefile/ERN020304.pdf

Bring this to a doctor.

Please, O'please, make sure the doctor, and hopefully a Neurologist knows and treats cluster headache patients. If not, and if he is not willing to read some of this literature than I am afraid you will have to thank him/her for their time and leave.

Getting in with a Neurologist is a bitch.

You must call offices everyday and hope for cancellations or you won't be seen for 3 months.

Good luck and if you want more info or to just talk please send me a message.

-Scott

Title: Re: Hello all - I'm new!
Post by 5-string on Apr 13^th, 2004, 11:38pm

Welcome Melissa70.....sorry your head's-a-hurtin'.
One day this beast will be licked.
...Mark..

Title: Re: Hello all - I'm new!
Post by TxBasslady on Apr 14^th, 2004, 4:33am

Welcome, Melissa

Go to the neuro with as much info as you can muster.

Print whatever you need and be prepared.

Hope you get good results from the doc.

PF vibes,

Jean

Title: Re: Hello all - I'm new!
Post by ChrisUhl on Apr 14^th, 2004, 7:30am

Hi Melissa

I swear by oxygen and Imitrex as abortives as most other clusterheads. You should definately talk to your doc about those.

That's about all. Good luck with the neuro tomorrow. Let us know what happens.

Take care... And wellcome aboard.

Hugs and best wishes

Christian

Title: Re: Hello all - I'm new!
Post by Luke63 on Apr 14^th, 2004, 1:06pm

Knowledge and information is your best weapon in fighting the Beast. Use it!!! And welcome.