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(Message started by: julie28 on Dec 21^st, 2005, 11:08am)

Title: new here
Post by julie28 on Dec 21^st, 2005, 11:08am

Hi,

My name is Julie and I'm new here. I'm 28 - today .... and started my day off early with a CH. I've been fighting these things the last 10 years but getting a dr. to consider that a girl's headaches might be something other than a migrain is almost impossible. My headaches have become chronic... I've been a guinea pig lately and it's so frustrating... esp. when nothing works. Imitrex does not work. Prednisone worked great the last few days but she only kept me on for one week and won't give me anymore. WHY?? So now I'm on my first week of Topamax... Won't even kick in until the 2nd week I'm told and the insert in the meds say they've never been tested on CH's. So mean while the right side of my head feels like it's swelling my the minute, my right nostril burns so bad and I look like a monster with my blood-shot right eye. My dr. says that if the Topamax doesnt work she's sending me to a neuro and my fear is that I have no med. insurance. What am I going to do? God please let this Topamax work! I have spent so much $$$ already and still no relief from these damn headaches. And when I dont' have the headaches I have the burning in my head and so I have the fear of a head ache which is almost as bad. yeah, I know .... boohoo for me. I just need to vent because people that dont' get headaches don't understand. and I'm so tired of people asking me 'oh, do you get migraines?" NO... I feel like I want to smash my eye in... does that sound like a migrain? and I try to hide the headaches from my husband because I dont' want to talk about it. I'm sneaking into the excedrin bottle at 4am. this has just go to stop.

Title: Re: new here
Post by julie28 on Dec 21^st, 2005, 12:04pm

thanks for the warm welcome everyone....

Title: Re: new here
Post by Ghost on Dec 21^st, 2005, 12:22pm

Sorry julie welcome to the zoo.
Been kinda busy today but from me to you welcome and I am truly sorry you had to find us but glad you did.
sometimes takes a while to get a response but they will come.

Title: Re: new here
Post by Jasmyn on Dec 21^st, 2005, 2:16pm

Julie, Hi and Welcome.

Like the Goast said sometimes this can be a zoo but just know that we understand and are here for you.

It is not an easy thing to cope with CH but with this family around it will be easier as you will not be alone.

Docs don't always understand awa family, friends and the general public but we do. Your frustrations are valid here.

Print as much info from the left hand side here and show it to your doc. Prednisone is a normal med for a lot of us here and ask your doc to put you on a longer dosage if it worked for you (show her the info) also ask for O2(check the oxygen info).

Because you suffer from this for some years already I don't know why you need to see a neuro and spend the money because a normal GP can prescribe the meds if she knows you've got CH.

Try to get your husband to read here or join up, he will then be able to support you(get support himself) or just have an understanding of what you are going through.

Wishing you pain free times
Jas

Title: Re: new here
Post by mcf69 on Dec 21^st, 2005, 2:38pm

Hi Julie,
Welcome to the board, sorry you had to find us this way. The way you describe things it sounds like you're having a heck of a time. The reason they probably won't continue the prednisone is because it's really not good to use long term, it may end up causing problems alot worse than the headaches. Like Jas said, check out the info on oxygen, it is really great stuff, and do a search on the topomax, there's been lots of discussion about it on the board. Best of luck to you and yours.......

Title: Re: new here
Post by E-Double on Dec 21^st, 2005, 2:39pm

Hiya

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: new here
Post by Phil L on Dec 21^st, 2005, 7:53pm

Hello Julie,

This stuff can really be a bear, but your in the right place and although I'm new to this board myself, I can assure you that these folks really care and the information here is right on the mark. Try the oxygen as it's a wonder. Hang in there.............

Phil

Title: Re: new here
Post by Barry_T_Coles on Dec 21^st, 2005, 11:23pm

Hi Julie

Everyone else has given you the good gen on what's available so i'll just give you the big welcome lick [smiley=lick.gif]and welcome to the best nut house around.

Kind Regards
Barry

Title: Re: new here
Post by MJ on Dec 22^nd, 2005, 1:17am

Hi Julie

Happy Birthday.

This place can be a gift as good as any other, welcome.

Title: Re: new here
Post by lionsound on Dec 23^rd, 2005, 9:02am

Julie,
I don't know your exact situation, but you are probably much better off in the hands of a good neurologist...or at least have your doc consult one. A good neuro will know of more treatment options for you.

read about oxygen and ask your curren doc for a script. You don't have to be neuro to write that.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

And we do understand your frustrations and fears. It's okay to vent here!:)
Be well and PF,
lionsound

Title: Re: new here
Post by alchemy on Dec 23^rd, 2005, 10:49am

welcome to the jungle and happy birthday. sorry you are having so much trouble, but you've come to the right place. if you can see a nuero asap. the initial investment may be well worth it if it helps get you relief. take care and have a pf x-mas jim

Title: Re: new here
Post by cazman on Dec 23^rd, 2005, 2:33pm

welcome julie im glad ya found us and i hope we can help hang in there and keep the faith.