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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> I am scared to goto sleep
        
(Message started by: rearviewmirror on May 27^th, 2004, 1:39am)

Title: I am scared to goto sleep
Post by rearviewmirror on May 27^th, 2004, 1:39am

I was diagnosed with cluster headaches today, I had never heard of them although I have been living with them for years. But never as prolonged and intense as now. I have had them 1-4 times daily/Nightly since april. I have recently beeen to two Dr. who treated me for sinusitus. I was preparing myself for an operation.
and now I learrn of Clusters. I have no doubt after doing a web search and readin gyour sight that this is what I suffer from. THis is worse than what I had prepared myself for this may never end. Every night its like someone is murdering me and they are gettting closer to finishing everynight. please help me

Title: Re: I am scared to goto sleep
Post by BobG on May 27^th, 2004, 4:30am

Hello rearview. Welcome to the board.
Some folks are taking melatonin to help their sleep. Some others take Dramimine to avoid the REM sleep mode.
Read all you can under the buttons on the left side of your screen. Educate yourself then you can educate your doctor. Learn about verapimil, imitrex and pure oxygen.
Hang in there. It will end.

Title: HRe: I am scared to goto sleep
Post by Filbert on May 27^th, 2004, 5:44am

Hi rearview
Welcome from me too but sorry your suffering so much at the moment.BobG has given you great advice and at least you have found this site where people do undersatand what you're going through.
All the best Filbert

Title: Re: I am scared to goto sleep
Post by rearviewmirror on May 27^th, 2004, 6:02am

Thanks I finally got an hour of sleep. I was put on Prednisone and Zomig. Any feed back ? How important is an neuroligist ? A GP diagnosed me.

Title: Re: I am scared to goto sleep
Post by pubgirl on May 27^th, 2004, 6:22am

Hi there

Prednisone is used as a short term treatment to break cycles or to use while waiting for a longer term preventive to kick in. It must be carefully monitored, used only for a few weeks, and tapered off.

Is the Zomig in pill form? If so, it will be too slow, you need nasal or injectable triptans for CH

P.S. A neurologist is a good idea as GP's consistently misdiagnose CH.

Wendy

Title: Re: I am scared to goto sleep
Post by Woobie on May 27^th, 2004, 10:25am

Hey there RearViewMirror........... (may I call you Rear??) LMAO ;;D

Just wanted to say HI and welcome!!!!!!!!

Tina

Title: Re: I am scared to goto sleep
Post by thomas on May 27^th, 2004, 10:37am

Nighttime hits?
Ch is a terrible condition and they hurt no matter what time of the day you get hit. Personally, the ones that kill me the most, are the ones that come while I am sleeping. Many people have had success avoiding the nighttime hits by using melatonin, which in the U.S. is available over the counter. The dosage varies from person to person, but most usually have success with anywhere from 6-9mg. Some have had luck with much lower doses as well; you may have to experiment with the dosage, in order to find the one that is best for you. As with any medication, check with your doctor before you start using it.
PFNAD to all.

Title: Re: I am scared to goto sleep
Post by eyes_afire on May 27^th, 2004, 6:58pm

Quote:

How important is an neuroligist ?

In my opinion, a neurologist may be very important. Many GPs don't have the balls to prescribe many of the meds used for clusterheadaches. On the other hand, if your GP actually diagnosed CH, that is rather impressive.

--- Steve

Title: Re: I am scared to goto sleep
Post by rearviewmirror on May 27^th, 2004, 9:07pm

Is the Zomig in pill form? If so, it will be too slow, you need nasal or injectable triptans for CH

The Zomig is in pill form, and the doctor only he gave me 6 doses with instructions to take four in four days sqave the other two, and prednisone for 10 days.

He was very confident that this would stop the headaches , but if I understand correctly this is not a long term preventiitve.
Thank you all for responding and welcoming me I really thought I was going to go insane with the headaches.

I have alot of questions and it is great to find people I can talk about this with.

Title: Re: I am scared to goto sleep
Post by Superpain on May 28^th, 2004, 5:14am

A neuro... Not only a neuro, but one that specializes in headahes is invaluable.

But from the sounds of your diagnosis and immediate medication regiment, it sounds like you have a better general doc than about 99.9% of us!

Get a script for oxygen with at least 12-15 lpm, injectable triptans are best (imitrex), and try not to get too fat on the prednisone. ;)

It sucks... I hate to hear of anyone with this condition... But a majority of us have been where you are now for years. The good part about that is that we're here for you. The bad part is, we haven't been here for years because we want to be.... And you just joined the club. :-/

Be strong and you will endure.
Be educated and you just might win.

Title: Re: I am scared to goto sleep
Post by thomas on May 28^th, 2004, 8:58am

on 05/27/04 at 06:22:14, pubgirl wrote:

Is the Zomig in pill form? If so, it will be too slow, you need nasal or injectable triptans for CH

I am quite happy with my zomig in pill form thank you very much. ;;D

Title: Re: I am scared to goto sleep
Post by rearviewmirror on May 29^th, 2004, 12:27am

I got an appointment with a neuro HA specialist. it is not for 10 days yet but they have me on standby if they have any cancelations. The receptionist said they know how painful the CH can be, so I already feel good about this Dr.

BUT ... although I have been on the reading all I can on the internet, and this site most of all, reading posts, I am very confused. I have not had pain for 3 days since starting meds, I do not no what this means. Have I stopped the cycle? Delayed it? Was it ending any way?

The pain of each HA was increasing and from what perspective i have it is 7-8 on Kip scale. I hate to think it can get worse, but in my gut i know it can.

Hey there RearViewMirror........... (may I call you Rear??) LMAO

If you want or you can call me Joe

Title: Re: I am scared to goto sleep
Post by Kevin_M on May 29^th, 2004, 1:32am

Pred without another prevent in the works?

Yeah, it will help for now, but the pred will end soon.

Your doc should have a certain obligation to treat the pain. If that small amount of Zomig gets used up when the pred ends, make a call to him or gp. The Kip scale goes to 10, you don't want to be there.

Kevin M

Title: Re: I am scared to goto sleep
Post by Woobie on May 29^th, 2004, 3:40pm

on 05/29/04 at 00:27:08, rearviewmirror wrote:

Hey there RearViewMirror........... (may I call you Rear??) LMAO

If you want or you can call me Joe

Dang it..........!!! REAR would be SO much more FUN!

Oh well...
Glad to see you're gettin into a neuro!!

Tina :-*

Title: Re: I am scared to goto sleep
Post by mynm156 on May 29^th, 2004, 4:39pm

WELCOME!!!

I am sorry to hear that you are one of us! Though I too was almost very much ready to give up. Just finding this place was a relief in itsself. Ther e is always help here and even if it is just to vent remember that we all KNOW what you are going through and you ae no longer completly alone. You will share and feel everyones pain. As you read the newbees and laugh and rib the oldtimers.

WELCOME

GOOD VIBES TO YOU!!

MYNM156

Title: Re: I am scared to goto sleep
Post by toader on May 31^st, 2004, 1:11am

Hey Joe,

Glad you are finding relief. Last winter I didn't sleep for several days in a row due to night attacks. That messed me up as bad as the headaches did.

Good news is that it sounds like your meds are working just peachy. You are by no means out of the woods. Your symptoms are under control for now, but if you were to go off the meds, they would probably return. Your neuro will give you advice on how long you can expect it to last and how long you have to be pain free before tapering off the meds. For some it is 2 weeks pain free, for others it is longer.

Looks like you caught it early and you are getting good feedback here. Best of luck.

Title: Re: I am scared to goto sleep
Post by TxBasslady on May 31^st, 2004, 1:47am

Hi Joe,
Welcome to the board.

The Prednisone worked for me for 197 days. Then I had a few hits.....over a few days. I started taking the Melatonin and have had no ha's since. It's great stuff.

I also sleep somewhat elevated. This has helped me not to be so afraid to go to sleep.

If you read all the info....you'll find lots of home remedies that seem to work for some of us here.

PF vibes,

Jean

Title: Re: I am scared to goto sleep
Post by rearviewmirror on May 31^st, 2004, 5:57am

on 05/31/04 at 01:11:49, toader wrote:

Hey Joe,

You are by no means out of the woods.
.

You can say that again. Sun night day 5 of Prednisone and i had 2 HA's. I did get one good night sleep on Sat. though.
I was hoping I got lucky, and got the right meds from the start. Feeing a little sorry for myself at first when I found out there was no cure. I am not going to give up though. Its going to be a long battle and if everyone here can fight it so can I.
JOE

Title: Re: I am scared to goto sleep
Post by UN_SOLVED on Jun 1^st, 2004, 10:07pm

Scared to go to sleep ... now that sounds like a true clusterhead. Sorry...I know exactly how you feel. Waking up to a CH is a real nightmare !
Some of the others have given you some great advice. Hopefully your cycle will end soon. Hang in there.

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