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        Cluster Headache Help and Support >> Getting to Know Ya >> Hi! New here and hoping for some insight for me!
        
(Message started by: lauren on Apr 5^th, 2008, 12:02am)

Title: Hi! New here and hoping for some insight for me!
Post by lauren on Apr 5^th, 2008, 12:02am

Hi All! I just started having really BAD headaches on 3/26. I have never gotten a headache that I would consider I migraine until now. Usually if I gotten a headache advil will clear it up. The pain has been throbbing and I also get a stabbing that goes from one side of my eye socket area to the other side. It flops back and forth and than stops. I then go back to either really bad throbbing or almost no throbbing. I just keep getting the attacks of the stabbing a couple of times throughout the day.

So anyway... I was in so much pain that I went to the emergency room that Saturday. They did a cat scan and found nothing. They gave me morphine while I was there but I still felt the headache. I was sent home with percocet and told to see a neurologist asap.

So I saw the neurologist on Tuesday. He said he thought it was migraines and gave me a rx for imitrex tabs. He told me to take 1-2 tabs when the pain came and also take 3 advil. Well this worked until the meds wore off. After about 8 hours I could feel the throbbing coming back. Now my insurance only covers 9 imitrex tabs for 23 days so I started to panic on how I was going to make it through the weekend with that many pills.

I got in touch with the dr today and he said that he didn't think the imitrex was working then. I guess he figured the whole headache should have just cleared up. So he prescribed me prednisone (to start off taking 60mg and decrease 10mg everyday) and topamax. So far I have taken the 60mg of the prednisone. I had one bad attack of the stabbing pain since taking it. I am going to take the topamax when I go to bed tonight.

I am going back to the dr on Monday and he also has me going for a brain mra as well.

I was reading so of the symptoms of cluster headaches and I am not sure if this is what I have of not. I don't get a runny nose or droopy eye. I have just had this THROBBING headache with these stabbing attacks. So bad that when I got one when showering, I had to sit on the floor hold my head rocking back and forth!

I'm pretty healthy. Never go to the dr for anything so this is pretty unusual for me!

I welcome any advise or insight!

Thanks!

Title: Re: Hi! New here and hoping for some insight for m
Post by DragonSlayer on Apr 5^th, 2008, 12:39am

Hey lauren [smiley=wave.gif]

So Sorry you came looking - But darn glad you found us.

Have you taken the Cluster Quiz yet??

http://www.clusterheadaches.com/quiz.html

Did your Dr. diagnose your headache as CH?

There is alot of info here about CH so pull up a chair and read... Read... Read...

We are not Dr.'s but can help you out with some of your questions.

Welcome to this clusterville nut house ;;D

Title: Re: Hi! New here and hoping for some insight for m
Post by lauren on Apr 5^th, 2008, 1:05am

Hi DragonSlayer!

Thanks for the welcome! I did check out the quiz and I'm kinda of a mix, so not really sure if what I have is a CH.

Like I said I am going back to the dr on Monday along with getting that brain mra. I'll see what he has to say.

There are some things that I seem to have... like I feel the headache lurking when I am feeling somewhat better. I am just waiting, knowing it there and it is going to return. My brain pretty much feels like it is swelling when I have the throbbing.

One thing I have not have is waking up in the middle of the night. When I do fall asleep, I pretty much stay asleep. But when I wake up I have been in so much pain I have to hold the walls just to stand up.

I've just been putting hot washcloths on my forehead and even went for a massage just to de-stress. That's not something I will normally do but the pain has been so BAD!

From reading what I've read I am praying that I don't have CH. I also seem to be in the age bracket. Just turned 31 in feb. Luckily I work for a great company and have not been able to work this week. They are very understanding and their sick time policy is excellent.

Keeping my fingers crossed that this pain goes away. As I write this I am starting to feel the head throbbing again!

Title: Re: Hi! New here and hoping for some insight for m
Post by Superdave on Apr 5^th, 2008, 1:48am

HI Luaren,

Sorry to hear your hurting. The headache your describing sounds very much ch like, but normaly for most of us the attacks are on the same side every time.

There are people here with a lot more knowledge about headaches than me. Although they may be in bed already.
Have you tried to drink redbull to abort your headache? It works really well for many of us here

Welcome, its a great place to be in a bad time

Superdave 8)

Title: Re: Hi! New here and hoping for some insight for m
Post by DragonSlayer on Apr 5^th, 2008, 3:37am

Hot wash cloths work for some, or a heating pad.

Many use ice packs or a bag of frozen veggies on head and neck.
Some have used both at the same time in different locations, what ever works!

Cup of Strong coffee and/or an energy drink Red Bull, Rock Star, Monster (any with Taurine & Caffeine).

Sounds like your Dr. is starting you with a pretty standard treatment for CH with a Pred taper and Topamax. What dose topamax did he start with?

I'm also praying it's NOT CH! Wouldn't wish that on anybody. Hoping it's good news for you!!

Title: Re: Hi! New here and hoping for some insight for m
Post by Jzero on Apr 5^th, 2008, 11:29am

Hello Lauren,
I'm real sorry to hear about your pain and wish you strength and healing real soon.
I'm also new here but not new to CH (23years so far).
Your pain certainly warrants the sympathy of CH sufferers! I'm glad you're getting an MRI, it's important to get that to rule out anything serious there.
The symptoms you're having may certainly be Cluster (not everyone has all symptoms, but definitely most of them). If it IS Cluster, you may find your symptoms become more distinctive as it continues - although all of us here would be deeply hopeful, along with you, that this will be a one off experience. One dread of CH's is going to sleep, because it wakes you with its severity. I don't know if that should be a significant factor in your diagnosis, but it's an important one usually. You say it's very bad when you DO wake up, so it's hard to judge. Either way, what you have is excruciating pain and I wish you free of it within the shortest time possible.

I found Imitrex would only benefit me for 5 to 6 hours, so I went back to Dihydroergotamine injections. These would help for 24 hours if I could inject at the very first sign of an attack. Over the years tho' they've not been as effective, but are certainly my main medicine of choice.
I've had oxygen. It was a 50/50 success rate the first time, however, this time (I'm currently on day 41 of a Cluster attack), the oxygen has been great. That seems due to the proper flow rate (15 LPM - Litres Per Minute) and the correct breathing apparatus (a non rebreather mask), as you need 100% oxygen.
I only got the oxygen yesterday tho' and I so wish I had it earlier for this attack as it's been my worst Cluster in all the years I've had them.

Anyway Lauren, know our thoughts are with you and be sure to let us know how you're faring.
May peace and gentleness be working its healing caress now and throughout the days ahead.
Take care!
Jzero.

Title: Re: Hi! New here and hoping for some insight for m
Post by DennisM1045 on Apr 5^th, 2008, 4:06pm

Hi Lauren,

Welcome to the site. Your symptoms aren't classic CH. I really hope you don't have it.

9 Imitrex pills is a limitation from your insurance company. Contact them and see if there is some kind of override your physician can fill out.

I did this with Blue Cross Blue Shield. Their form is call a "Quality Care Dosing Override". I just had to have my Neuro fill it out.

You want to be careful with Imitrex or any triptans. They take the pain away quickly but can cause rebound headaches if overused. They can also become less effective. But cheer up, there are six other triptans out there so if Imitrex causes problems or looses its effectivness you can always switch to another.

Good luck with your diagnosis. We'll be here for you either way.

-Dennis-

Title: Re: Hi! New here and hoping for some insight for m
Post by Annette on Apr 5^th, 2008, 5:06pm

Hi Lauren

If you dont get ONE droopy eyelid, red and watery ONE eye, runny/blocked nose on ONE side, pain drilling behind the eye on ONE side , pain on ONE side of the head, temple, across the ONE cheek then its unlikely that you have CH.

CH pain is normally not throbbing either. Its dull but intense and boring, drilling through your skull into the eye.

I dont think you have CH, it sounds more like migraine with ice picks mixed in. Topamax and prednisone can be prescribed for other types of headaches, not just CH.

You should go back to your neuro with a more detailed headache diary describing exactly when, how, where it hurts, draw a diagram if you can and ask him for a definite diagnosis.

Title: Re: Hi! New here and hoping for some insight for m
Post by coach_bill on Apr 5^th, 2008, 8:03pm

HELLO, sorry to hear about your headaches, i think you should take the cluster quiz on the left bar. And if you do have clusters, you found the right team to be on. But after listening to the types of headache you described im just not ready to put you the on the cluster headaches roster just yet. and thats a good thing. ;;D Feel better.. coach bill

Title: Re: Hi! New here and hoping for some insight for m
Post by lauren on Apr 6^th, 2008, 9:22pm

Thank you all for your input and kind words.

I do agree that I do not have some of the symptoms of CH. I am going back to my neurologist tomorrow along with getting that brain mra. I have started keeping a detailed report of my headaches to give him so maybe it will help with a diagnosis.

I happened across this site searching for any help of what I may have. I had never heard of cluster headaches and I really feel for all of you. I can't even imagine going through all of this all the time!

DragonSlayer & Superdave - I did try one of those Rockstar drinks and it seemed to help. Either that or it was just a coincidence!

Again, thanks for all the advice and I'll let you all know what I find out in the coming days.

Title: Re: Hi! New here and hoping for some insight for m
Post by Barry_T_Coles on Apr 6^th, 2008, 10:18pm

on 04/05/08 at 17:06:33, Annette wrote:

Hi Lauren

~~If you dont get ONE droopy eyelid, red and watery ONE eye~~, runny/blocked nose on ONE side, pain drilling behind the eye on ONE side , pain on ONE side of the head, temple, across the ONE cheek then its unlikely that you have CH.

CH pain is normally not throbbing either. Its dull but intense and boring, drilling through your skull into the eye.

I dont think you have CH, it sounds more like migraine with ice picks mixed in. Topamax and prednisone can be prescribed for other types of headaches, not just CH.

You should go back to your neuro with a more detailed headache diary describing exactly when, how, where it hurts, draw a diagram if you can and ask him for a definite diagnosis.

Not necessarily always a sign, after 5 years episodic & now 4 years of being chronic I still haven’t experienced the ONE droopy eyelid, red and watery ONE eye.
Barry