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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> CH'ers Nieces with Migraine
        
(Message started by: jon019 on Oct 26^th, 2005, 11:11pm)

Title: CH'ers Nieces with Migraine
Post by jon019 on Oct 26^th, 2005, 11:11pm

Hello All,

I hesitate to impose. The "M" word in this group, it doesn't go over very well. Have noticed tho that there are those here with both CH and migraine.

Both my nieces have migraine (I think their mother, my sister, too, although she does not talk about it. One tough head nurse, that lady). They are sympathetic to Uncle Jon's "headaches", and tolerate the multiple family gatherings I miss with an aplomb I'm not sure I could match.

Anyway, is anyone familiar with a group like this for migraine sufferers? If it is 1/10 th the class, humor and help I have found here, it is something I would like to pass along.

Regards

Jon019

Title: Re: CH'ers Nieces with Migraine
Post by nani on Oct 26^th, 2005, 11:24pm

I know of two of them, jon. Both are active, but I personally don't find them as personal and funny as this one is.
One is at
http://brain.hastypastry.net/forums/forumdisplay.php?f=144
the other at:
http://headaches.about.com/mpboards.htm

Support is always good. :) pf wishes, nani

Title: Re: CH'ers Nieces with Migraine
Post by JenniferD on Nov 7^th, 2005, 4:59pm

I feel I must respond. Please listen carefully and be tolerant of my misspellings and ramblings.

I am hanging my head in shame on this one, because I am guilty guilty guilty of belittling those who suffer from migraines as not hurting as badly as ch'ers. NEVER AGAIN WILL I SAY THAT AND NEVER AGAIN WILL I EVER NOT COMFORT ONE WHO HAS A MIGRAINE.

The last cycle i had like this one was 9 years ago, and i wouond up in the hospital, i remembr my neigbor talking to me in my foyer and i just remember holding my head and crying and saying how much my head hurt. each time i moved my eyes or head, my breain slammed against the inside of my skull and caused blinding pain, light hurt like hell, like searing pain, moving hurt, freaking everything hurt so much.
Now I am on the topamax, lots of yyou know taht, and its working ok on the ch, but during this cycle i've been hit by my 6th 20+ hour migraine. I've never had migraines before except during that cycle 9 years ago and now this cycle, but didn't know that's what they were then. ch AND migraines during a ch cycle.
So if someone wants to get pissy with me about the 'forbidden" M word, then screw them, but Jon, you go right ahead and support your nieces, encourage them to find a good support group for MIGRAINES like nani posted, you can and should help them find information on MIGRAINES, and even some of the encouragement and support on how to cope with ch here can help them get thru the tough times they'll have to deal with with their MIGRAINES.
There, I'm done. hugs and pf times to you and your nieces.
Jen

Title: Re: CH'ers Nieces with Migraine
Post by BarbaraD on Nov 7^th, 2005, 7:01pm

I agree - migrainers need support also. When my son was little he suffered migraines. Me, I'd never had a headache in my life and had no tolerance for him when he said his head hurt.

Then, lo and behold - in my later years (after he was grown) I developed headaches from hell.... finally after knowing I had a brain tumor and would never live to see my grandkids - I was diagnosed with CH. Now I needed support and sympathy BAD and guess what -- "Oh Mom, it's only a headache - take some aspirin and it'll go away!"

Now, it my elder years, I've developed arthritic migraines in addition to CH. The CH are worse (by a long shot), but the migraines will put me down also (and you know what a tuff old broad I am).

So my point here is -- don't ever discount someone with the big "M". They hurt like hell also. Give them support and comfort - they may not understand CH, but I can guarantee you Migraines HURT also.

Hugs BD

Title: Re: CH'ers Nieces with Migraine
Post by jon019 on Nov 7^th, 2005, 8:41pm

Dear Jen and Barb,

THANK YOU (already thanked nani, great name too, told her so).

Even with CH I had an inadequate regard for migraine. After all, it didn't hurt as bad as MINE. No one could have been more righteous in their agony than me. I never dismissed a migraneurs (sp?) pain to their face,
but I grew tired of the one upsmanship. What did it get me? Nothing! What did it benefit them. Nada!

NO MORE! Your posts and the poem by Tom, say it all. This affliction has changed me, and maybe it's only benefits are that I appreciate what i DO have more, and despise the pain, and sympathize with others regardless of the "label" they have been dealt even more.

My thoughts and prayers are with you, and I don't care anymore what particular "headache" anyone has been diagnosed with. They are ALL rotten.

Best wishes

Jon

Title: Re: CH'ers Nieces with Migraine
Post by pubgirl on Nov 7^th, 2005, 10:00pm

Jon

I get both migraine and CH and if it is any help I have discovered a few things about migraine that are not well known and may help.

High flow rate 02 aborts my migraines as well as my CH, well worth a try if they want to stay clear of triptans. The Migraine Action Association here are aware of it but it isn't known enough to be recommended yet.

The received wisdom that there are food triggers for migraine like chocolate and fruit is currently in question. It seems very possible from recent research that it is more likely that an individual snacks on these foods when the blood sugar level drops, and it is something to do with fluctuating blood sugar or hormone levels, not the food stuff itself. The advice is that a migrainer should eat regularly and try and maintain a reasonable blood sugar level at all times.

Where the sufferer is female and has hormone related migraine at ovulation, puberty or premenstrually, large doses (1000mgs per day) of GLA, found in Oil of Evening Primrose and Starflower Oil can minimise the body's reaction to fluctuating hormone levels and can prevent some attacks.

Hope some of this may help.

Wendy

Title: Re: CH'ers Nieces with Migraine
Post by JenniferD on Nov 8^th, 2005, 6:58am

on 11/07/05 at 22:00:01, pubgirl wrote:

Jon

Where the sufferer is female and has hormone related migraine at ovulation, puberty or premenstrually, large doses (1000mgs per day) of GLA, found in Oil of Evening Primrose and Starflower Oil can minimise the body's reaction to fluctuating hormone levels and can prevent some attacks.

Hope some of this may help.

Wendy

hmmmmm....interesting....... I have found that w/my daughter and I, taking slightly higher doses of b complex vitamins helps w/fluctuating hormone levels and pms symptoms(ok, we're both hormonal bitches without the vitamins!).....will be interesting to see if this will also help to alleviate migraine symptoms. Haven't been taking my vitamins lately... hmmm

edited to add: btw: Good post Wendy! Very informative.

Title: Re: CH'ers Nieces with Migraine
Post by pubgirl on Nov 8^th, 2005, 7:04am

Jennifer

Thanks. You have reminded me that a combination of GLA and B vits is supposed to be even better for PMT, so ergo probably should be better for hormonal migraine too.

Wendy