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        New Message Board Archives >> 2002 Posts >> Finally a place I can go
        
(Message started by: BSoares74 on Dec 21^st, 2002, 12:27pm)

Title: Finally a place I can go
Post by BSoares74 on Dec 21^st, 2002, 12:27pm

Hello Everyone, Im new to this site. I have been suffering from headaches/migraines for years now. This past month has been the worst of my life. The headaches have never been so painful and so predictable. I dont want to go to sleep at night because I know I will awaken with one. If a day goes by and I dont have one I want to jump up and down because maybe they have gone away. Not the case. They just come right back. Im taking so much imitrex ( I know Im not supposed to) the pharmacy is running out! I have never seen this site before and I started reading some of the other messages and I can not believe that Im not alone. I try explaining to my family and friends what I go through, they just pass it off as a normal headache of some kind. What they dont understand is that when a headache comes on I welcome death, because the pain is just excrusiating (sp). Lately I have been feeling I can not live a normal life. I know of all the medications, treatments, preventatives, I have tried everything, and it seems the only thing that can pass the time away is imitrex and sometimes that doesnt even work. I was on the internet today and found this site. I am so thankful that there is a place that I can go. I feel like Im not a freak and its not all "in my head" No pun intended. :) --Bethany

Title: Re: Finally a place I can go
Post by jonny on Dec 21^st, 2002, 12:35pm

The million dollar question is "DO you have cluster headaches or meegraines?"

.....................jonny

Title: Re: Finally a place I can go
Post by domm on Dec 21^st, 2002, 12:47pm

Bethany - clusterheadaches are very unique and I pray that you do not have them. If you do, this is the place to be. You'll find support, advise, wonderful people and like you said "a place to go".
Have you been diagnosed with CH? Have you tried oxygen as an abortive? Any preventatives? You say you've tried everything... anything work besides Imitrex? A little more info would be helpful. Did you take the Cluster quiz? (buttons on the left)
Welcome and let us know
Good luck
domm

Title: Re: Finally a place I can go
Post by BSoares74 on Dec 21^st, 2002, 12:51pm

By reading the definition of Clusterheadaches I would assume that it would be them. I researched the site before I posted and it seems like everything I have read is what I go through. The headaches or whatever they are come back every single night at the same time around 9pm, and then again sometime when Im sleeping. Only once in a GREAT while do they happen during day. I cant remember the last time I had one in the afternoon. I dread nighttime.

Title: Re: Finally a place I can go
Post by jonny on Dec 21^st, 2002, 12:58pm

Lets hope you dont have CH, in the mean time try to see a Neuroligist instead of self diagnosing.

.....................jonny

Title: Re: Finally a place I can go
Post by paul_b on Dec 21^st, 2002, 1:08pm

When you go to the Nero, check out Maxalt and Zomig. Many have reported relief in the evening by taking before going to bed. Make sure you get yourself checked, Jonny is right on, he knows of what he speaks.

Title: Re: Finally a place I can go
Post by BSoares74 on Dec 21^st, 2002, 1:11pm

I havent been to a neuroligist, but I have an appt in Jan. I have had an mri, (came up nothing) from my regular doc, but since, I have switched. I have tried the preventative Nortriptyline (doesnt work) and also triptans, Zomig (not fast enough) and Imitrex. Have tried Yoga and acupunture to try and stay away from the meds (didnt work). I have read a lot about oxygen, I think that will be my next thing. Thank you for replying to me. I know you are all a family on this site, and when someone new comes along that doesnt know everything, it may get frustrating. Things have not been easy for me as well for all of you guys, but its nice to know Im not crazy. Thanks for listening. Beth

Title: Re: Finally a place I can go
Post by jonny on Dec 21^st, 2002, 1:29pm

No matter what you have if you need info on 02 drop me a line, I'll hook you up.

...................................jonny

Title: Re: Finally a place I can go
Post by domm on Dec 21^st, 2002, 1:44pm

Beth - its not a matter of knowing everything. None of us knew when we got this horrid condition. What really matters is a correct diagnoses so that you can get the proper treatment. If you have CH, this is the place to learn.
For example - on my first two cycles I used oxygen with very poor results. During my third cycle, I found this site and read how to use O2 properly. Now, when I get hammered, use of O2 knocks the beast out of my head within minutes. First two cycles, I didn't know about preventatives. This cycle was cut short with the use of Verapamil. I learned about it here and took the info to my doc.
Like I said before - I hope you do not have CH
Please don't misconstrue our questions as not being welcome. Pull up a chair.....
domm

Title: Re: Finally a place I can go
Post by Charlie on Dec 21^st, 2002, 9:05pm

Sorry you had reason to find us and to me, this sounds like clusters. Headaches that wake you up are very likely clusters. Here is a link to Simon's letter that he urges you to copy to show employers, friends and family. A print out of this will help your family understand this is not a headache in any stretch of the imagination. It's a terrible misnomer.

http://www.ouch-uk.org/ch/note_colleagues.cfm

Charlie

Title: Re: Finally a place I can go
Post by SommelierCH on Dec 22^nd, 2002, 6:50am

Sorry you had to find us, but glad you are here. Put on a hard hat, mouth guard and thigh high boots and wade right in.

What works for me is a triptan, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, under the tongue dissolving tablets, NOT the regular kind which take too long to work) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when I’m asleep I can’t feel the shadows increasing and I wake up with the Big One. Jonny clued me in, that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks. Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.

The cumulative amount of knowledge residing within these people on the board, is amazing.

Good luck,

David J.

Title: Re: Finally a place I can go
Post by BSoares74 on Dec 22^nd, 2002, 12:52pm

Thank you everyone for your replies. I think I have learned more in 2 days than I ever imagined from this site and from all of you. I do have the chewable zomig (5mg) which Im going to try taking tonight before bed, maybe I can get a good nights sleep. I just cant wait till january to see the nero. Im going to print out all of the info on this site and take it with me. Thanks again.

Title: Re: Finally a place I can go
Post by Drk^Angel on Dec 23^rd, 2002, 1:03pm

Welcome to the board! Sorry that the beast is stomping on your cranium wearing his big black shitkickers with steel cleats. Good luck!

PFDAN..................................... Drk^Angel

Title: Re: Finally a place I can go
Post by dodger on Dec 23^rd, 2002, 5:20pm

:'(Beth: Welcome to the club. I'm sure you will find a lot of comfort in knowing you are not alone in this battle. Believe me it is a battle, it's you against the beast, and you are going to have to be stronger than him. This site, and the people on it will help you a great deal. Make sure you see a neuro who is familiar with C.H.'s. Good Luck and keep fighting.