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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> yeppie   i am not alone
        
(Message started by: tessa_c on Feb 22^nd, 2006, 12:44am)

Title: yeppie i am not alone
Post by tessa_c on Feb 22^nd, 2006, 12:44am

hi
im a 26 y/o female, and i have suffered (cant stress suffered enough) with headaches for 6 years. ive gone through 2 gp's to find what i consider the first step in help. my first gp didnt listen to me and wouldnt give me a referral to a neuro all he would give me was midrin. all the while im freaking out friends and co workers and lost boyfriends because they got tired of running me to the er in the middle of a date.
so i left that doctor and the funy part about it, is that he didnt want to give me my records to take to the next gp.
now for all my fellow suffers you may think that what i am going to say is ludicrous.
but at my first appt with the new gp i had an attack.. and thank god i did. he tried o2 and it helped, i almost cried (actually i did!)
got the refferal to the neuro but the attacks didnt stop. they come march-june 2-3 a day. the more i read about headaches the more i was convinced that i had clusters. but whenever i brought it up the the nero he would say that i didnt fall in to the bracket. i may not have but my head did. i stayed with this guy for 3 years
(it took me 2 to get him)
until i ran across a pharmasist and we had a long talk, and he said point blank GET A SECOND OPINION.
ive been with the new neuro for about 6 months and he has put me on verapamil. ive only been on it for a week
but im looking forward to see if it works.

i know this has been long but im glad to have found this site. and to know that there are other people out there like me, and that it isnt just in my head!!!!!!!!!

Title: Re: yeppie i am not alone
Post by AussieBrian on Feb 22^nd, 2006, 12:55am

Welcome home.

Title: Re: yeppie i am not alone
Post by Lizzie2 on Feb 22^nd, 2006, 1:16am

Hi Tessa!

Welcome to clusterville! ;) Sorry you have to be here, but glad you've found us since you do! I'm very sorry to hear of all you went through in your quest for diagnosis... resembles a lot of other people's stories when they were suffering but didn't have a diagnosis or a good doc to help them. I'm VERY glad you got to the new neuro and are on the right track, though! Read lots around here, and you'll learn a TON. The links to the left are a great place to start.

Hugz,
Carrie :)

Title: Re: yeppie i am not alone
Post by Jasmyn on Feb 22^nd, 2006, 3:50am

What an ordeal to go through but yes a lot of CHers here had to endure the same. I'm just glad you've got a neuro now that knows about ch and that can help you.

This board is full of info but the best thing is you know you're not alone anymore and we are here to support each other.

Welcome Tessa and let us know how the Verapamil is doing. What dosage are you on?

Title: Re: yeppie i am not alone
Post by tessa_c on Feb 22^nd, 2006, 1:45pm

im taking 240 for the first week. then after that 1 twice a day. im almost up on the week.

this is a question to anyone who has used verapamil.

did it make you feel jumpy, or tired throughout the day?

how much of an improvement did it make?

i used to take topamax, but both me and the old neuro came to the conclusion that we werent sure if it helped because by the time that it would have kicked in me episode was over?

and 2 on the o2

when my doctor got it for me, i was able to get the concentrator for home and a tank to keep in the car. the insurance that i had at the time paid for it. but now i have blue choice. will blue choice pay for it? (i still have the tank and concentrator at home). i was just going to the medical store and paying $25 to refill the tank once i lost that insurance.

now about the mask

i never had a face mask i was just using the tubes in the nose. was i losing precious oxygen? because sometimes it would work and then it wouldnt. when it didnt help i just put the tubes in my mouth and inhaled that way.

<<<<<<<< AUSSIEBRIAN>>>>>>>>>>

thanks i do feel home. when i have talked to others who didnt understand, even my mom i felt like they didnt understand or thought < whatever> or like they might have thought that something was wrong with me.

<<<<<<<<LIZZIE2 & JASMYN>>>>>>>>>>>>

i had never done a lot of research on ch. i had read about it and though to myself over and over again that sounds like me, only im not a man.
but when i found this site i was at work and nearly cried.
i realized my story was in bits and pieces your story.

Title: Re: yeppie i am not alone
Post by Ghost on Feb 22^nd, 2006, 1:51pm

Get a non rebreather mask or you can make one i will try to find pic of one someone made it works great

Mike

Title: Re: yeppie i am not alone
Post by Ghost on Feb 22^nd, 2006, 1:59pm

Found it with directions thanks to Mr. Happy

on 01/04/06 at 00:08:57, Mr. Happy wrote:

Well OK then......that's a valid excuse. Here's my emergency util.

Grab some electrical tape. Get a one or two gallon zip lock baggie. Cut the corner off of the bag, opposite the zip seal. Small.....just big enough to let the O2 tube fit thru. Insert O2 tube. Tape it solidly in place. Grap a cardboard tube from a roll of paper towels. Stick it 1/2 way into one side of the unzipped bag, and ZIP it shut as tight as possible against the tube. (A dab of super glue on the ZIP doesn't hurt where it meets the tube, but you know me and glue...)
Tape the bag securely around the tube. Open O2 tank/regulator, and let bag fill with hand over tube. Put tube in mouth. Inhale thru mouth only, exhale thru nose. Repeat.
Don't drool on the tube, stupid. Decreases longevity.
Passing along state secrets, y'know.

One day, I'll call you and remind you of a favor......
RJ

PS: Forgot pix:
http://mushys.com/O2/tempmask.jpg

A poor man's Cmasx (http://clustermasx.com). REAL poor.

Title: Re: yeppie i am not alone
Post by ABarham on Feb 22^nd, 2006, 2:36pm

Tessa - Welcome. I am the mother of a ch victim. When he suffers, I suffer. I want so much to take away his pain, to make it "all better" but a kiss just doesn't work anymore. We are new here too, but I can tell you in the few short days a wealth of information, help and care has been found here. It's a ch family and we all care about each other. Even when those close to you can't understand, just remember you have us.

Louise

Title: Re: yeppie i am not alone
Post by Guiseppi on Feb 22^nd, 2006, 2:47pm

Welcome to the board. Your story mimics a lot of people on the board here. Amazing how much ignorance there is about this condition. Your doctor was right on one hand, it is all in your head! I'll second and third the vote on getting oxygen. After 26 years and a godzillion diferent meds, oxygen is still my first line of defense. Good luck and welcome again to your new family.

Guiseppi

Title: Re: yeppie i am not alone
Post by Linda_Howell on Feb 22^nd, 2006, 3:08pm

Quote:

now for all my fellow suffers you may think that what i am going to say is ludicrous.
but at my first appt with the new gp i had an attack.. and thank god i did. he tried o2 and it helped, i almost cried (actually i did!)

Not ludicrous at all Tessa.

My Dr. has always been good at allowing ME to talk and get impatient with me but one day I went to see him re: another matter and as I was waiting for him to come into the room I started to get hit...I was scratching the wallpaper off his walls by the time he got there and he just stood at the door, arms folded across his chest and watched me for a while. He then had his nurse get me a shot of Trex but I was so embarrassed I could die.

After that however he has NEVER questioned me when I've asked him to try something new or talked to him about my HA's. He told me " Linda you know more about these headaches than I do. Anything you want I will go along with."

Dr. in the U.S. get only 5 hours of education in Med. school on headaches. ALL KINDS OF HEADACHES. Only 5 hours. So yes, we do know more than they, and it was a great thing you got hit in front of him.

Linda

Title: Re: yeppie i am not alone
Post by marlinsfan on Feb 22^nd, 2006, 3:46pm

Hi Tessa, yep you're not alone. Unfortunately for us, there are many of us dancing with the beast.

Look carefully at the sentence below the picture in this thread. It has a link to clustermasx, which is an excellent non-rebreather mask.

"A poor man's Cmasx. REAL poor." The link is in the CMASX word in the other post.

You need to use a non-rebreather to get the best results, as the nose cannula or whatever they're called don't give you 100% O2 delivery.

Title: Re: yeppie i am not alone
Post by Dragnlance on Feb 22^nd, 2006, 10:35pm

Hi Tessa, and welcome home.
I myself went thru what you did as well. I am 42, and didnt find a doc until 5 years ago that understood headaches at all.
Point being, we understand your frustration all too well.
There is tons of info here, and it will take a while to abosrb it all. You might just find that special item that will make life bearable once again. Ask questions.

and one last thing, we want you to know that you will never be alone again, as you have found your family.

Lance

Title: Re: yeppie i am not alone
Post by Charlotte on Feb 23^rd, 2006, 3:34pm

Verapamil is one I've been on. At first, it was like a miracle. All the triggers were neutralized. As the cycle progressed, however, it stopped working, and by the end of the cycle, it didn't work at all.

I thought it made things worse, but since that time I have found that nothing actually makes the cycle worse-it just is worse at the end.

I've been married for 30 years this year and my husband can't sleep without me so he always wakes up when I hop out of bed several times a night. He is just now reading about ch now that I found this site.

Does anyone else run back and forth 10 times in a 6 foot space with their attacks hit?

Title: Re: yeppie i am not alone
Post by tessa_c on Feb 23^rd, 2006, 4:33pm

thanx ghost....im running out to the dollar store tonight.

i live in south carolina and ive looked all around for a headache clinic and cant find one. im going to give this new neuro a chance. ive got to keep the faith.

here is another question

i get the ch in the left eye. now my cycle is usually march-june. but last year the little !#%& tricked me. it hit mid june-early aug.

now even when im not in a cycle or am not having headache lets say nov-march 4 out of 7 days a week my left eye feels alot of pressure behind it or it gets a little droppy when the pain is a little harder. i do get light and sound sensitivity then. but i can function.

i went to an opthamologist to check out my eyes because nothing can make me believe that all this pain will not cause some kind of damage to them. she said that my nerves looked good and that the pressure was normal. i ordered tinted glasses anyway just so i could wear them at work when the lights kick in. they cant say anything about dr ordered glasses right>
(smile)

i told this to the new neuro (you know the eye pain) he said that i may be having small clusters. and to take an imitrex. my gp feels that they may become chronic.

does anyone else have this problem?

and if you are chronic did they start this way?

my neuro told me to take an imitrex for the eye pain. i get 100mg so i started to split them and take a pain pill.

is there anyone else that does this.

i get all 3 forms of the imitrex and i have a special use for each one. i start to stockpill in nov. because my insurance will only allow me so many a month of each. 9 pills, 6 nasal sprays, and 4 injections. even with a letter of medical nessacity the increase in quanity only last for 3 months.

Title: Re: yeppie i am not alone
Post by RichardN on Feb 23^rd, 2006, 8:50pm

Hi Tessa and Welcome

I started much lower on Verapamil and got my first PF day when I hit 240 mg (had 3 that night . . . but it was a great day) . . . got as high as 360 mg. Many here take much more and in combination with other meds. Though not everyone does, you may experience some constipation (I did) which can be helped with diet or, if necessary stool softeners. You may also be getting the Verapamil "buzz" which for me usually disipated within 30-45 min.

02 is my only abortive . . . can't take Imitrex (arterie blockage & high cholesterol) so 02 is my only abortive . . . .WONDERFUL! I can kill the beast in minutes if used early-on in the attack. What flow rate are you using? You need at least a 15 lpm regulator and the non-rebreather mask to be really effective. DO NOT USE THE STRAP ON THE MASK!

Make sure and read the "water X 3" link to the left . . . I'm convinced it has made a difference for me.

You have much reading to do and many questions to ask.

You've also found the motherlode of CH information from people who truly understand your pain. Welcome to the family.

Be Safe, PFDANs

Richard