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Hello I am very new to this hell (Read 3151 times)

Dena

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Hello I am very new to this hell
Aug 16^th, 2008 at 5:23pm

Hello everyone! I would first like to introduce myself. I am Dena, 43 years old, wife to a most wonderful husband and mother to 3 kids and grandmother of three.
I would now like to say how GREAT this sight is. even though it has only been three weeks since my first cluster headache hit I have found little to no place to seek real help and support. I have been moved to tears by many of the posts. I sit and read them and say FINALLY I see somebody else actuallys GETS what it is like to feel what I am feeling.
I have been to the ER 3 times in the last seven days. I beg the doctors to do something aside of give me painkillers and send me away. Not that it ever happens like that for me. I have destrpyed more pain killers than I have taken because they just do NOT help.
Last night I went to the ER at UAMS (University of ARkansas Medical Science) and was actually told "this cannot be cluster headaches because you are not a man". Yep, no lie those are the words the doctor actually let come out of his mouth. According to him, I suffer from migrains....no light sensitivity, no nausea, and sound really doesn't make it worse. Even so with the fact that I am a woman I could not possibly have Clusters. Now the ER visit on 8/8/08 was when a doctor diagnosed with Cluters. I came home and researched online and was amazed at how much it sounded like what was happening to me.
Sadly I have yet to get to see a neuologist. I have an appointment for 26th September and as you all know that is a long time away. Granted I do not know that I can get any relief from him either but wouldn't we all try anything to stop the pain!?
I have not been able to sheild my kids from these attacks and that so breaks my heart but what can we do? My husband and 13 year old daughter are GOD SENDS!! They hold my hand and just keep telling me how much they love me throughout the attack. It may not seem like much to many folks but that helps me so much, not lessening the pain but to know that they are trying sooooooo hard to do anything to ease the torture.
Question.... how many of you are terrified to drive anywhere? I am so afraid of one hitting while I am driving down the road and taking out all the people unfortunate enough to be around me in the car and on the road. My attacks happen all times day and night so I never ever know when one will hit. Although the most severe start around 3PM when I have to get my kids from school.
Sorry for such a long post but I just wanted to say HELLO and THANKS for giving me a place to come for reassurance that other people suffer through this hell, even though I would not wish this on my worst enemy. It is nice to know that I am not alone. Does that make sense?! Hope so.

Take Care
Dena

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maalstroom

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Re: Hello I am very new to this hell
Reply #1 - Aug 16^th, 2008 at 5:35pm

Hi Deana,

At first:
go to a neurologist, preferably with headache specialism. I MEAN IT. There are many many headaches out there. Some might even resemble CH. I f you get a proper diagnosis, you will get a proper treatment. Believe me, medications won't work if diagnosed improperly. Different meds work for defferent headpains.
But if you might suffer from our precious CH.... try some [u]energy drink which contains at least 1000 mgs of caffeine and taurine.[/uI'm not kidding. Try it.
Hope to hear how that worked.

The best from the Netherlands, Pascal.

...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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maalstroom CH.com Old Timer Offline ''Dance to my tune''.... the hell I will! Posts: 491 the Netherlands Gender:	Re: Hello I am very new to this hell Reply #2 - Aug 16^th, 2008 at 5:43pm Oh and by the way: doctors should start to think outside of the box. I am very light sensitive while in cycle, even though it might not be a characteristic of CH. In cycle, I shun sunlight. And for that matter, women DO get CH as well. As I said, they need to stray out of their boxes.
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Garys_Girl

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Re: Hello I am very new to this hell
Reply #3 - Aug 16^th, 2008 at 6:20pm

Dena, I'm so sorry you had to seek out this site - but being that you needed to, I'm glad you found it.

While you wait to see the neuro, what about printing out info on clusters for your GP and see if he/she won't write a scrip for oxygen? We got 02 from Gary's GP while waiting for initial neuro appointment.

02 and caffeine seem to be the best first-line defense in aborting these things.

You may also want to start taking melatonin. It helps regulate sleep cycle, and many cluster heads find it helps them avoid the night time hits. Start at 3mg and work your way up if you need to - many take between 9mg and 15mg, though according to Gary's neuro, up to 18mg a night is safe. It's available at any drug store these days.

You may also want to read up through searches in the medication section on magnesium, taurine, and kudzu. Being from Arkansas, you probably recognize Kudzu as a weed. But for quite a few cluster heads, it is a natural remedy that works as a preventative - or it at least helps reduce the frequency and intensity of the hits. And it's available at health food stores.

At least a few steps you can take while waiting to see the neuro.

((((((((((((((hugs)))))))))))))

Laurie

This is enough already

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mezza

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Re: Hello I am very new to this hell
Reply #4 - Aug 16^th, 2008 at 10:36pm

Dena-

sorry you're having such trouble but relieved that you are going to find some more support

Call the neuro's office and ask them to be on the cancellation list- that is to be called asap when someone cancels. Sept 26 is just too far away

Also - grab some red bulls- at the first sign of a hit, chug one down. For many of us it can kill an impending attack. Keep a pot of coffee brewing. Drinking two cups of straight black coffee has stopped many a headache from ramping up for me.

Did any of the doctors at the hospitals give you any meds - like imitrex to abort or verapamil, topomax, lithium to prevent the headaches?

If you have a relationship with your Gp, maybe in the meantime you can print out the medical information on the left and take it to him/her ( after you have read it of course) Possibly he'd be willing to help till you get in with the neuro.

as far as driving- I have been hit while driving- many of us has. It sucks , but you get through it. Just pull over in a safe place. Have a red bull on hand! I always carry an imitrex or other kind of abortive in my car and at my office just in case! The trick is to beat it before it ramps up - hence if you don't have meds - black coffee and red bull!

Good luck and stay with us- There are lots here who can help

kelly

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purpleydog

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Re: Hello I am very new to this hell
Reply #5 - Aug 17^th, 2008 at 5:50am

Dena,
Glad you found us, I'm sorry you had to though. If your ER diagnosed you, then your GP should have that record, and ask him if he can get you some imitrex, either nasal sprays, or the stat dose injection. The pills take way too long to work. Zomig is another triptan that works well, lasts longer, and comes in a nasal spray. Also, ask about oxygen, with a non-rebreather mask, delivered at at least 15 liters per minute. If you can't get the O2 from the doc, there are other ways, let us know, we will help you.

Get some Red Bull, or Rock Star, these are energy drinks with caffeine and taurine in them. They should have at least 1000 mg of taurine, this makes the caffeine get into your system fast, and will kill shadows, or even a hit if you get it fast enough. Good idea to keep a couple in your car.

Also, it's probably best that you don't try to drive when you are having an attack, just pull over, and slam the energy drink, and wait until it is over. Also, if you turn on your A/C in the car, full blast, and stick your face right over a vent, this can help.

Keep frozen peas in your freezer, putting these on the affected side helps. And you can reuse them. For some people, cold is good, some people heat is better. Hop in the shower, or wet down your head.

Read the tips over to the left, print out what you need, and take it with you to the doc, and neuro. The OUCH website also has a lot of good info you can print out to take with you. For your neuro appt., it may be best to take the info to his office before your appt. and drop it off, he or she won't have time to read it while you are there.

Read read read, and ask questions. The med board and cluster specific board have a lot of information that will help you. You have come to the right place. Let us know how we can help!

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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purpleydog CH.com Alumnus Offline Posts: 2732	Re: Hello I am very new to this hell Reply #6 - Aug 17^th, 2008 at 6:01am Dana, read this thread, Bob Johnson has posted some links that you can print out and take to your doc and neuro. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Hope this helps.
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Bob Johnson

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Re: Hello I am very new to this hell
Reply #7 - Aug 17^th, 2008 at 10:20am

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Bob Johnson

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Guiseppi

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Re: Hello I am very new to this hell
Reply #8 - Aug 18^th, 2008 at 11:00am

Well you've gotten a boat load of great advice already. I'm male, 48, with 2 grown kids. I've been battling beasty for about 30 years and I know EXACTLY what you mean, how much it means to have your family as a supporter. The good news is there are very effective treatments, you're hurting way too much. Push to get into the neuro as quick as you can, and DEMAND oxygen. As you'll see from reading the boards, girls DO get CH. So glad you found us, stick around and let us help you!

Guiseppi

PS Get hubby and kids to join and check out the supporter section, it''s where the family members can all get together and bitch about what pains we can be when we're on cycle. Knowledge takes so much of the fear out of the equation!

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hello I am very new to this hell Reply #9 - Aug 18^th, 2008 at 12:21pm Hi Dena, Well, there's not much that I can add.... You have been given great advice. Please stay around and learn as much as you can. We are all here to help in every way that we are able. Even if it is just to say Welcome! I'm sorry that you are in pain. Hugs, Jeannie
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DennisM1045

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Re: Hello I am very new to this hell
Reply #10 - Aug 18^th, 2008 at 12:25pm

Welcome to your 2nd home Dena! Sorry you had to find us but I'm glad you did it so quickly.

People have chimed in with some great advice already. The only thing I'd add is to provide the info from Bob BEFORE your appointment with the Neuro. He won't have time to properly digest it when you are in his office.

Verapamil and Oxygen have been the real difference maker for me. I wouldnt' have known about either without this site.

Good luck and let us know how we can help.

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Dena

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Re: Hello I am very new to this hell
Reply #11 - Aug 31^st, 2008 at 1:15am

Oh my goodness! Thanks to all that have replied with advice and well wishes!! I appreciate it so very much.

I am on the cancellation list with the neuro and I got an appointment for yesterday (Friday) only to be called on Thursday to be told the doctor had to cancel because of family emergency so now it is to be September the 12th. Although to me that still seems so far away it is sooner than the original appointment.

I have a binder full of the info about clusters to take to my GP but knowing him I am not too sure it will make a difference but I am willing to beg!!!

Take Care all and thanks again! Glad to have found new friends!!

Dena

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debOUCH

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Re: Hello I am very new to this hell
Reply #12 - Aug 31^st, 2008 at 9:04am

my heart goes out 2 u, dena.......................u have gotten alot of great advice here, keep it all "in your back pocket", @ all times,and have all of your info when going to neuro.......................all of the people here are wonderful, and will assist you with love and concern...............if it werent for this site, i do not know how i would have survived.................................try the melatonin @ bedtime, i had success with it for a bit........................and yes, keep the red bull handy @ all times.................................thinking of you, and wishing you PF time real soon..............deb Smiley

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Karl Ex Member	Re: Hello I am very new to this hell Reply #13 - Aug 31^st, 2008 at 5:10pm first welcome and hope you find some treatment soon. the advice you have been given is sound i will make another push for oxygen 15 litres per minute via a non- rebreather mask(100% oxygen) for at least 15-20 minutes. please read the oxygen info on this site.
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Batch

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Re: Hello I am very new to this hell
Reply #14 - Sep 3^rd, 2008 at 4:08pm

Dena,

Hang in there... and sorry you're having such a rough time. Help isn't too far away, but let's take it by the numbers to make sure you get it sooner rather than later.

1. By now you should have found several neurologists experienced in treating cluster headache disorders... If not, shoot me a PM and I'll help find a few near you that have already been rated by other cluster headache sufferers in your area.

2. Make an appointment.

3. When you get in to see the neurologist, ask for a prescription for oxygen therapy as your first choice of abortives for your attacsk. Most neurologists will want to do some tests (MRI or CT Scan) to make sure your painful attacks are not being caused by another condition before they give you the Rx for oxygen.

4. When your neurologist agrees to prescribe oxygen therapy for you, make sure it reads as close as possible to the following:

"Oxygen therapy with a non-rebreather mask at a flow rate of 12 - 15 liters/minute AS NEEDED for cluster headache atacks."

A prescription like this hits all the bases...

(a) Your insurance company will not be able to confuse the Rx as a need for supplemental oxygen due to any of the COPD disorders. That would require a letter from your doctor providing your oxygenation levels and take weeks longer to make happen.

(b) You're home oxygen supplier will know you need an oxygen regulator capable of delivering 15 liters/minute and

(c) You're home oxygen supplier will also provide you with the proper mask instead of a nose cannula that will not work for cluster headaches.

5. Please PM me with the name of the doctor that treated you in the ER at UAMS (University of ARkansas Medical Science) that actually told you "this cannot be cluster headaches because you are not a man."

It's unfortunate, but this doctor is in need of some remedial training on primary headaches. A polite letter or email to UAMS will help the doctor, UAMS, and prevent the next unsuspecting cluster headache sufferer from falling victim to a lack of proper training and education on cluster headaches.

Take care,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Linda_Howell

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Re: Hello I am very new to this hell
Reply #15 - Sep 3^rd, 2008 at 7:37pm

Quote:

was actually told "this cannot be cluster headaches because you are not a man". Yep, no lie those are the words the doctor actually let come out of his mouth.

Trust me on this one. Your're not the first one who has been told that nor will you be the last. sigh.........Physicians get exactly 5 hours of training in headaches in Med. school. 5 FREAKING hours!!!!! and that entails ALL kinds of headaches. It is no wonder they are so ill-informed.

You say it has been only 3 weeks since your first cluster headache? I am going to assume you have seen another Dr. since this last idiot...and have been diagnosed..right?

Keep us posted. We will all try to help you sort through the maze of information here. I have been chronic for more than 21 years now. I am certainly not a Doctor...but most of us have a LOT of experience with this condition and maybe we can steer you in the right direction.

Linda

Hurt people.....hurt people. Think about it.

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