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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> newbie with ?
        
(Message started by: megs on Oct 29^th, 2004, 9:30pm)

Title: newbie with ?
Post by megs on Oct 29^th, 2004, 9:30pm

Hi ya'll
I am in week 3 of my first cluster. Just wanted to see if anyone had a similar first time. I have gone through hormone therapy and that is what I think started this torture. I have had migraines before but this is a completly different monster. Has anyone had "regular" migraines before these clusters? My head is very sore in between attacks is that normal? Also I am taking Imatrix (which usually helps with regular migraines but not so much help with these) also I am taking lorotab for pain. Is heat or cold better? Any help or suggestions for the newbie PLEASE!! I am so excited I found this place so that I can talk to people who understand. My boyfriend and friends look at me like I am crazy. Thanks, megan

Title: Re: newbie with ?
Post by Kevin_M on Oct 29^th, 2004, 9:55pm

on 10/29/04 at 21:30:27, megs wrote:

My head is very sore in between attacks is that normal? Also I am taking Imatrix (which usually helps with regular migraines but not so much help with these) also I am taking lorotab for pain.

Yeah, mine can be a bit tender on the side, sore, but not headache sore, been through a war sore.
What is the form of imitrex? If you used the pill form, it has been not known to be all that effective, as well as taking too long anyway. The other forms that have helped some are the nasal spray and injectable.
The lortabs aren't going to be good for clusters and can make the situation worse in time. If things continue or get worse you will notice lortabs(sp) to be inefficient and, in tab form, too slow anyway to catch the attack early like you should.
See a doctor and get a diagnosis. Clusters will need special attention, a neuro referral is common. Preventives could be the next step too.

Welcome

Kevin M

Title: Re: newbie with ?
Post by megs on Oct 29^th, 2004, 10:10pm

thanks for the reply- i am using the nasal spray and it just doen't have the same effect as it does with a regular migraine. i am going to see a neurologist first thing next week. are there any bad side effects to preventives? i am taking meds for a small tumor so i am not sure i can take preventives yet. also i am 25 just wondering when other people had there first attacks? thanks

Title: Re: newbie with ?
Post by Kevin_M on Oct 29^th, 2004, 10:32pm

on 10/29/04 at 22:10:45, megs wrote:

i am taking meds for a small tumor...

Above all, see the neuro first. The equation is different with the tumor involved. Thanks for relating that.

Kevin M

Title: Re: newbie with ?
Post by writer on Oct 31^st, 2004, 9:13am

Dear Megan,

Yes, for many of us a "sore head" is common.

As for heat vs. cold: by all means, COLD! Ice on the back of the neck offers a tiny bit of relief during an attack.

In the "hot" realm, try drinking hot, hot (brewed) coffee during an attack as well.

Hoping for your relief,

B.

Title: Re: newbie with ?
Post by Kris_in_SJ on Oct 31^st, 2004, 8:59pm

Hi Megs,

Heat and cold are common questions here and, the fact is, like everything else with CH, we're all different. Personally, I can't stand either when in the throes of a HA during cycle (though sometimes a strong cup of expresso can lessen a shadow).

First and foremost - get an accurate and confirmed diagnosis of CH from a neurologist. This is vital to your ongoing treatment - not only now, but for future cycles.

My own magic formula:

- Verapamil 480mg/day
- Imitrex injections to abort the HA
- Prednisone taper down (starting at 100mg) - tends to relieve HA's until the Verapamil (preventative) starts to kick in.

Here's a great link - read and print out for your neuro appointment:

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

Read and learn all you can - It's your best chance at relief!

Kris

Title: Re: newbie with ?
Post by thebbz on Nov 1^st, 2004, 7:59pm

Hey there Megs,,
I have migraine with CH. Migraines preceed cluster in my case and are constant through the episode. Gives me something to moan about, between the real pain. LOL.
Study all you can . . information is power against the beast. All the best
8)
BB

Title: Re: newbie with ?
Post by megs on Nov 1^st, 2004, 8:21pm

thanks for the replies. the neuro thinks i am having a transformed migraine or a high pressure headache. she gave me stepdown steriods and i might have a lumbar tap. do ya'll know anything about those? I hope that the steroids help if not I am not sure I can last one more day with this pain. I feel like I am going crazy.

Title: Re: newbie with ?
Post by Kevin_M on Nov 1^st, 2004, 8:39pm

on 11/01/04 at 20:21:41, megs wrote:

she gave me stepdown steriods and i might have a lumbar tap. do ya'll know anything about those?

Lumbar tap, no. Not in relation to clusters.

If it's a decreasing taper of prednisone, it will help but it is usually done while a preventive is increasingly stepped up so it will be in your system working (hopefully) when the steriod taper is done and ends it's temporary effectiveness.

Kevin M

Title: Re: newbie with ?
Post by thebbz on Nov 1^st, 2004, 9:56pm

If it is prednisone for me it takes a day or two before the clusters stop. I do lots of imitrex until this happens.
Hang tough..this too will pass. Lubar is a different story.
BB

Title: Re: newbie with ?
Post by angel-ache on Nov 2^nd, 2004, 8:50pm

Hello Megan-

I just read your short story. I am terribly sorry for the headaches and the tumor. I think I have it bad...

Sounds like your still figuring out what is wrong with your head. Have you tried to abort a headache with oxygen? Tried imitrex injections? Veramaphil is my choice for taming the beast. Up 320mg a day, 80mg tabs 4 times a day 5 hours apart (non time released). I haven't had an ache since saturday morning!

Good luck Megan,

Angela