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        New Message Board Archives >> 2003 Posts >> New member looking for advice
        
(Message started by: dette on Aug 20^th, 2003, 10:01am)

Title: New member looking for advice
Post by dette on Aug 20^th, 2003, 10:01am

I just found this site this morning.........and very grateful for it. Even though I don't know any of you..I don't feel so alone. I was reading some of the stories and couldn't stop crying because they hit so close to home. I don't know ANYONE else who has CH's and when I tell people about them.....well they think I'm crazy or exaggerating. And of course they have all kinds of remedies (which unfortuneately don't work), and they are shocked when they don't work because they work for them. So anyways...I'm very thankful to find you all and I hope you will have some info to help me!!! 1. How do you get a doctor to get you all these "other" treatments?? By the time I get an appointment for a neurologist (because it takes over 2 months for appt) they are gone and I don't even get a chance to try a new treatment. I beg and plead and cry and still can't get my foot in the door!! I have started using Maxalt on this cycle and it does work good but unfortuneately like the Imitrex and Zomig...after using it so much it seems to use it's potency..or the body gets immune to it..I don't know. I need a prophylaxis for them..but I can't get a neuro..so it's just a vicious circle. Any questions or help would be extremely appreciated!!!! Thanks

Title: Re: New member looking for advice
Post by Hirvimaki on Aug 20^th, 2003, 10:08am

Welcome! You'll find the best part of this site is the support you can get from fellow CH sufferers. Stick with it. I've had the best luck with O2 (bless oxygen - I'd suggest your read the page on oxygen that is linked on the front page of this site) and Imitrex (although the Imitrex is just a back up - in case I cannot get to my O2). If your doctor is not cooperative when it comes to treating or even understanding CH, I suggest you keep searching for one that does.

Good luck!

Title: Re: New member looking for advice
Post by Cooked Brain on Aug 20^th, 2003, 10:15am

Hi Dette,

sorry you have to be here too... :(

Have you tried going to the hospital or neuro during an attack? They shoulnd't send you back when they see you are in so much pain, at least they will give you some oxygen at the emergency or the neuro might take a few minutes to look at you. Be easy on the abortives like Imitrex, try only to use them when you are having a REAL bad one. You could also try to cut off the attacks by taking half the dose, 20 mg Relpax did it for me most of the time. If not, take the second half. Try not to exceed your daily limit.

Still get your appointment with the neuro, even if you are out of cycle, you should get a prescription for an (or some) preventive meds. The normal path is verapamil first, then combined with lithium and if that doesn't help with prednisone. Take your time to read all the info on the message board and to the left, all you need is here :)

hope you will do better soon, hang in there!

pfdan

Title: Re: New member looking for advice
Post by KingOfPain on Aug 20^th, 2003, 11:55am

dette,

Be pro-active in your health care.

Be relentless in your attempts at getting in
to see a Neurologist.

If you have to pay out of pocket to get in to
see a Neuro (sooner), do it. It is that
important to be seen & diagnosed
(in a timely manner) by someone who knows CH.
By all means, make sure the Neuro has CH
experience. Found this lesson out the hard way.
*Yes, I know not everyone has the ability to afford
this cost. Believe me, money well spent.
You may be able to get reimbursed at a later
date/time by your insurance company (if you
have one).

Go to an ER, Urgi Center (whatever they call
an after hours non-ER emergency clinic in
your area), Dr.'s office, etc.... when under attack.
It's like the "A picture is worth a thousand
words" kinda thing. Seeing is believing.
*If possible, have someone else drive you there.

All comments above are, of course
just my opinion.

Hope this helps.

Good luck.

KingOfPain

Title: Re: New member looking for advice
Post by ksmiggy on Aug 20^th, 2003, 12:01pm

Hi dette,
Bad news about the head, good news you found the site, Stick at the docs, you will get there in the end, as far as painkillers go, stay away from ibuprovens, have found most success with paracetamol/codiene( if taken immed at the onset of attack) , your gp can provide anything you need prior to seeing neuro, but you gotta push.

Title: Re: New member looking for advice
Post by Linda T on Aug 20^th, 2003, 3:00pm

Hi, sorry you're in the midst of this s**t right now. But I happen to agree with KingofPain. Keep at it. Get an appt now - and bring as much stuff from this site as you can. You need to be aggressive as far as your treatment is concerned. Otherwise, they'll just let you hang. I know, I've been there (like all others!)

Go have a seaat the neuro's office and wait until he sees you if you have to!

Good luck and PFDAN always, Linda T

Title: Re: New member looking for advice
Post by Lori on Aug 20^th, 2003, 3:50pm

I am very glad you found this site. It is the best place to be if you have clusters. You will learn so much so read everything you can.

I personally would make an appt with your family doc if you have to just to get in somewhere and to get treatment started while waiting for the neuro appt. Take information to your family doc about clusters and a list of meds so you all can get some treatment started. Go to the OUCH button on the left...then click on Cluster Help and then click on medications. Print and take to doc. Still call the neuro back and also call others and ask to be placed on a cancellation list. You might get in quicker that way. Just be sure when setting up an appt with a neuro you ask the receptionist/nurse if the doctor is experienced in treating Cluster Headaches...not migraines, but CH. Be sure they know their stuff so you don't waste your time. Even if your cycle stops, you need to get establised with a neuro so next timne (if there is a next time) you can get in a couple days and won't have to wait 2 months.

I hope you find relief.

Title: Re: New member looking for advice
Post by OwieMan on Aug 20^th, 2003, 4:01pm

Yup, we all know that you arent exaggerating a bit in how bad it hurts.

My advice is to look at a list of triggers, like foods, drinks and things like that and see if there is any corellation to them and your headaches.

One thing I noticed is that caffiene was a big trigger for me. I quit drinking all of those cafeinated sodas and coffee and it did help some, even though I would still get hit. Chocolate too......

It helped some and anything is better than nothing.

Title: Re: New member looking for advice
Post by don on Aug 20^th, 2003, 4:05pm

From the OUCH site of recommended Docs.

New Hampshire

Dr. Patrick Carroll
Concord
Richard Eichhorn

Title: Re: New member looking for advice
Post by dette on Aug 21^st, 2003, 9:38am

Thank you everyone for your advice!! I am doing those things. They just are moving as fast as I want them too. My pcp is wonderful and understanding of me but not the condition. She really wants a neuro to oversee...but she is doing everything she can in the meantime. I did give her this website to check out so maybe she will and maybe can understand it more. I think the MOST frustrating part is that I work at a hospital and still can't get in sooner! I am on the cancel list and I could be in the office in less than 5 minutes...but there is about 15 people ahead of me on the list. I know you all have been down this road also...and I feel for all of you. I'm just so relieved to know that I'm not alone. My biggest fear with these damn CH's is the depression and frustration!! I am NOT a quitter but sometimes there just seems to be no light at the end of this ordeal...and I just want to give it up! My last bout was for 4.5 months...I don't think I can go through that again! I am at 1.5 months so far with this bout...and it's already taking it's toll on my mood. I guess I'm scared to death it will be another long haul. And I pray everyday that I will be strong enough to deal with them! It doesn't always feel that way though.

Title: Re: New member looking for advice
Post by stuey on Aug 21^st, 2003, 2:29pm

We know you are in pain, it does get better even if you don't believe it now, it really does. I take Imitrex Injections (as do most) for the most severe and Relpax 40 mg to 80 mg if I can catch it coming these help. You mentioned Imitrex losing its effect - are you talking pills or injections? And if pills what milligrams? I have taken 100 mg pills with success but they take far too long to work for me and just one 50 mg imitrex pill didn't do it. Many of us use verapamil sr for preventative. it works for me but only at 960 mg daily. some take much lower doses and that helps them, i just aint one of them. Somebody even said icepops helped them so i went out and got some icepops. don't know that they really helped me, but they sure tasted good. ;) well that's my input, but many people here know lots more than me you'll see. I wish you only the best. Fight the fight and know you can get through this and you will. Peace. Stuey