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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New, freaked out member
        
(Message started by: K2Writes on Aug 22^nd, 2007, 7:49pm)

Title: New, freaked out member
Post by K2Writes on Aug 22^nd, 2007, 7:49pm

Hello all, I've been lurking for a couple of days, trying to learn and be comforted and so forth, and thank you all so much or the amount of information here. I am both relieved and scared by what I've read.

I'm 38 and have had regular headaches for most of my life. Saturday night I had some white wine, dinner, had a hard time getting to sleep so went to the guest room so I wouldn't bother my husband, finally got to sleep, woke after 4 in the morning, stood up, and got hit with the most excruciating pain I've ever felt. I cried out, clapped my hand to my left eye and then grabbed the wall to stay upright. I thought I'd had some sort of hemmorage or aneurism and I stumbled to the bathroom to look in the mirror because I was sure my eye had to be bulging out of my head.

It wasn't, but the pain kept on. I tried to lay back down and it felt worse, figured if it was a hemmorage I'd have collapsed, so I didn't wake my husband. Took Aleve and aspirin and started drinking water, and, bizarrely enough, considered getting on the eliptical machine (!). Finally got back to sleep around 8:00, but had dull ache in eye and head the rest of the day. Happened again the next night, after 4, only it wasn't quite as bad. Got online and researched, found clusters and took the tests, everything comes back that this is exactly what it is.

The third night I was so afraid to go to bed, and sure enough, it happened again, just after 4, and this one was worse than the first night. Got back to sleep, then it happened again, only not quite as bad, at 10 that morning.

Last night, absolutely freaked out to go to sleep, took an Ambien (5 mg), woke up at 8, no pain except a dull eye/headache on left side that hasn't gone away the entire time. I know y'all talk about "ghosts' and "shadows" and I assume those relate to this. I'll continue to educate myself on the board so I can properly discuss what these things are.

Clearly my next step is a neurologist, correct? After reading so much, I am wondering about the best way to approach it. Should I go to the emergency room first to get to one without having to go through all the red tape to get a referral?

Thank you so much for having so much information available and for being so open with your experiences. I am very nervous about going to bed tonight, but last night has me a little hopeful?

Title: Re: New, freaked out member
Post by Rosybabe on Aug 22^nd, 2007, 8:37pm

Welcome aboard K2!!

sorry to hear you have to face the beast. it is not a pretty thing.

Aleve and aspirin would do nothing for CH, not even a tickle.

you can start with melatonin (9 to 12 mg for night hits) and red bull at the first sight of one coming on.

You do need to see a neurologist. take a diary of your headaches and check also the O.U.C.H. site. There is a dairy you can print out and some info to take to your Doctor.

You have to be your best advocate. Some Doctors do no have enough information about CH and you are going to have to educated them.

Hoping the beast gives you a break soon.

pain free wishes for you!!!

Rosy.

Title: Re: New, freaked out member
Post by K2Writes on Aug 22^nd, 2007, 9:05pm

Thank you for the welcome, Rosy. I'd been writing things down, but I will get over to O.U.C.H. to find more info and a good format for the diary. It's been difficult for me in the past to be assertive with doctors, but I think just the pure pain factor of this thing might give me the needed firmness.

I'm just hoping that I'll be an episodic person and maybe this week is a fluke. (Are you all laughing at me at this hope?!) I am SO very sorry for all that have to live with this. I simply cannot imagine this as a daily, monthly, or even yearly thing and hope you all can find relief.

You always feel sort of goofy using new lingo :) but I desperately wish you all pain free futures.

Title: Re: New, freaked out member
Post by Rosybabe on Aug 22^nd, 2007, 9:17pm

when you get to see the Doctor, ask for O2. it is tha safest and more reliable weapon against the beast. It works for a lot of us. You can also get the info about O2 and show it to the Doc.

we all know very well the scary feeling of going to sleep thinking that we might be awake by the horrible pain again but you should not let the pain rule your life.

get rest whenever you can and try to see the Doctor as soon as possible. You can also try cold ice packs to the area (it works for me) some say hot help them.

what works for some may not work for others.

I really hope your cycle be a very very short one.

and you can always come back here.

clusterville never closes, the light is always on :)

Rosy.

Title: Re: New, freaked out member
Post by K2Writes on Aug 22^nd, 2007, 9:28pm

I have a cold pack at the ready in the freezer and might try an ambien again tonight since I don't have the melatonin yet. I will definitely pick that up tomorrow. I KNOW I'm not supposed to, but I've gotten so tired and worried about this that I'm having a beer tonight. I imagine if this continues I'll learn my alcohol lesson soon enough. :-[

Oh, this is weird (or maybe not!): last night, I DID wake up around the 4 a.m. mark. I did not have the slamming pain, but my left eye made a single tear, large enough to go ahead and roll down my cheek, when I woke. Just the one, like a bad movie or something ::) But I just moved really slowly to get up and didn't get the hit, just the dull ache that still hasn't gone.

Thank you for the tips and for the arena to talk about this. I feel like a big baby, but I swear I'm actually pretty good with pain. Okay, malatonin tomorrow!

Title: Re: New, freaked out member
Post by DennisM1045 on Aug 22^nd, 2007, 9:54pm

Hi K2! Welcome to your new home. I'm sorry you had to find us. Rosy has given you some great advise to get you started. Let us know how things go and ask all the questions you can think of.

Wishing you PFDAN.

-Dennis-

Title: Re: New, freaked out member
Post by Jonny on Aug 22^nd, 2007, 10:00pm

on 08/22/07 at 21:05:35, K2Writes wrote:

I'm just hoping that I'll be an episodic person and maybe this week is a fluke. (Are you all laughing at me at this hope?!)

Thats something that we never laugh at, for your sake you dont have CH!

Title: Re: New, freaked out member
Post by K2Writes on Aug 22^nd, 2007, 10:06pm

Thank you, Dennis and Jonny. I'm learning a lot and will keep you posted. I'm shutting down for the night, both the computer AND me, and hope to wake at a normal time without staggaring around in pain. Good night, and best to you all.

Title: Re: New, freaked out member
Post by Batch on Aug 24^th, 2007, 11:29pm

Hey K2,

Welcome aboard... Sorry you're having a bad time. Get to your doctor or neurologist asap and have him check you over. Tell him you think you have cluster headaches and give him your symptoms. If he agrees, have him cut you an Rx for 100% Oxygen at 7-15LPM as an abortive. Imitrex is the primary abortive approved by the FDA for cluster headaches so ask for the nasal spray or injection. There are a number of preventatives too. The single most constant thing about cluster headaches is we are all wired differently. What works for one will not work for another. And what works for you today, may not work for you later.

The secret to success is having a doc or neuro that will work with you to find the preventative that works best.

If you do have cluster headaches... and is sounds like you do, 100% oxygen will be your friend if you use it right to abort the attacks. Successful O2 users can usually abort an attack in 5 to 25 minutes. It's not perfect but it beats banging your head on the floor for 30 minutes to an hour.. Oxygen (O2) works with imitrex so there's no problem using both to abort a painful attack.

There's a lot of good info on O2 and other meds in the menu at the left side of this window. We also have a site at OUCH (in Yellow) with an O2 User's Support Team when you get your Rx for O2. There's a user's guide there that will help you get what you need.

Take care and hang in there.... You are among friends, supporters, and fellow cluster headache sufferers.

Batch

Title: Re: New, freaked out member
Post by LindsayLoo on Aug 25^th, 2007, 3:26am

Hi K2!

Welcome, you are going to love this place, I am a newbie too and fell in love with it the first few days.

I didn't want to deal with all the red tape BS and really had no idea what the hell was wrong with me so I went with the ER first, luckily for me (not really, but you know what I mean) I had all the main symptoms of CH's. Partial Horner's, dying from the pain, lack of sweat on face, drippy nose etc, etc. So they are the ones who diagnosed me and made gave me the refferal to the neuro and some medicine to get me started on until then.

Good Luck,
Lindz

Title: Re: New, freaked out member
Post by Bob_Johnson on Aug 25^th, 2007, 1:48pm

NO ER room; they often deliver the least effective care, in our experience, and you don't need a referral, in any case.

YES, to an experienced headache doc. But our experience is that many neurologists are NOT qualified to treat complex headache disorders. Take the time to search via:

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: New, freaked out member
Post by assaultme on Aug 26^th, 2007, 1:54pm

K2:
When I came here a few days ago I was under the incorrect impression that nothing can be done about CH. I still don't know squat about it compared to anyone here, but I guarantee you that you have found the right place. Here is why you have an awesome tool kit at your disposal: The people here are incredibly knowledgeable on this subject. Most are problem solvers and willing the help without benefit to themselves. I went from totally freeked out thinking there was no solution to my old positive self with every reason to believe I have the engine hittin' on all 8 cylinders.
Best wishes, Dave