Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2002 Posts >> Newbie here suffering from SEVERE headache
        
(Message started by: emilysmommy on Sep 30^th, 2002, 4:48pm)

Title: Newbie here suffering from SEVERE headache
Post by emilysmommy on Sep 30^th, 2002, 4:48pm

Hi. I'm a 24 year old female & have been suffering from a new type of severe/excruciating headache over the last 3 weeks. I have been waking up with severe stabbing pain on the left side of my head. It feels like an ice cream headache. It hurts behind my eye, on my forehead & radiates down to my neck, but it's only on the left side. It takes about 2-3 hours to get rid of the excruciating pain & them I'm left with a residual headache the rest of the day. Today has been by far the worst. I woke up 8:30 with the severe head pain & I could barely open my eye it was watering and the pain was so bad. I still have some pain left over, but it's not the excrucating type. I have a history of headaches but none like these. I have migraines with aura and tension type headaches from tight muscles in neck & back. One other time I had similiar headaches like these for about a week (5 years ago) & they just disspeared & never returned. I had a normal MRA last week so that pretty much rules out any yucky stuff. Does this sound like cluster headaches? My Dr. just called in Elavil so I will start that tonight. I also take Feverfew & Magnesium for migraines. Any insight or information is greatly appreciated.

Michelle

Title: Re: Newbie here suffering from SEVERE headache
Post by BobG on Sep 30^th, 2002, 5:00pm

Hello Michell,
How's Emily?

It sounds like you may have cluster headaches. On the left side of the screen is a cluster quiz button. Take the quiz and come back and let us know what it said.

And while you're pushing buttons, read all you can on the subject.

Welcome to the board.

Title: Re: Newbie here suffering from SEVERE headache
Post by emilysmommy on Sep 30^th, 2002, 5:04pm

There are 16 questions, 4 of which I answered the question inconsistent with cluster headaches.

Michelle

Title: Re: Newbie here suffering from SEVERE headache
Post by 2late on Sep 30^th, 2002, 5:18pm

make yourself an appointment with a neurologist, hopefully he'll have some experence with ch & can help you. good luck & welcome! ............2late

Title: Re: Newbie here suffering from SEVERE headache
Post by BobG on Sep 30^th, 2002, 5:25pm

Hmmmm.....
Now it's time to do as 2late says. Get your doctor to refer you to a neurologist.

There's lots of information at this site. While you're waiting for the neuro appointment, read read and print. Educate yourself.

Good luck.

Title: Re: Newbie here suffering from SEVERE headache
Post by Jim R on Sep 30^th, 2002, 5:50pm

And remember, emilysmom, we're all a little different and even if you don't meet all the criteria on the quize, it does not mean you don't have CH's... We all suffer a little differently. Best wishes. - Jim R

Title: Re: Newbie here suffering from SEVERE headache
Post by emilysmommy on Sep 30^th, 2002, 6:11pm

Hi everyone. Thanks for the replies.

Actually, I have seen 2 neuro's in the last 4 months for different problems and I have an appt. at C.C. in November as well I plan on discussing my headaches with him then. I just thought I'd post on here to see what others thought. Experience is the best knowledge. My GP told me to use Imitrex for the headaches but I don't think I want to take Imitrex everyday. My GP also said that Cluster Headache just means headaches (of any kind) that are clustered together. I assuming she is incorrect. From what I've read Cluster headaches are the worst headaches out there. What do you all do to cope with your headaches? I'm a stay at home mom and my toddler is suffering just as a I am.....she's pretty much on her own for the 1st couple hours of the day :(.

Michelle

Title: Re: Newbie here suffering from SEVERE headache
Post by catlind on Sep 30^th, 2002, 7:27pm

Hi Michelle,

I also suffer from Migraines as well as CH. I'm going to recommend you take the test a second time and relate only the information from this current new headache. It may help you get a better handle on whether it's CH or not.

And like all the above posts, talk to your neuro. A cluster headache is not just any headache that occurs in clusters, it is its own beast, and not a pleasant one to deal with.

Hope you get some clear direction from your neuro, and take the time to read read read on this site. There is more info here than you can find anywhere.

Cat

Title: Re: Newbie here suffering from SEVERE headache
Post by pjbgravely on Sep 30^th, 2002, 8:41pm

Good advise so far, All I can add is that I stopped the wake up CH with a combination of limiting sleep to 6 hours (the beast hates well rested victims) and sleeping propped up. This also stopped middle of the night CH (the worst) . It may work and it may not. Elavil is the first meds they try becouse it's cheap. Then you will go on from there if it doesn't work. Many take mutiple imitrex injections daily with out trouble. See imitrex tip at left if you use injection type.

Title: Re: Newbie here suffering from SEVERE headache
Post by bobr on Sep 30^th, 2002, 10:17pm

get yourself a tank of oxygen regulator and mask.If oxygen aborts an attack they are probably ch, if not they are prob something else

good luck
bobr
oz

Title: Re: Newbie here suffering from SEVERE headache
Post by Charlie on Oct 1^st, 2002, 2:47am

These sound like clusters to me. If they wake you up, I bet they are cluster headaches. We find that it's impossible to sit still with these things. A neurologist will give you lots of boring tests but they should be done for peace of mind.

Are there other headaches that wake one up? I don't know. What about it kids?

Charlie

Title: Re: Newbie here suffering from SEVERE headache
Post by RevDeFord on Oct 1^st, 2002, 7:22am

It does not sound like cluster headache to me, only because of the 2-3 hours it takes for the pain to subside. I would be more inclined to ask if you have gotten your eyes checked recently? It sounds like there may be another kind of physical problem causing your pain.

I say this also because I have clusters, and migraines, but I also get a similar headache as what you are describing because of a head trauma that I had. An EEG test run by my neurologist confirmed a large area behind my left temple that has a "short" in it of some kind.

Your GP is obviously completely uninformed as to what a cluster headache is. This kind of tom foolery irritates me more than anything else. If I have to go to a doctor and tell them how to do his/her job, I would definately find another one. Cluster headaches are not merely any type of headache that comes in clusters. It is a specific kind of headache called a cluster headache. It is not a tension headache strung together with other tension headaches. It is not a sinus headache clustered together with other sinus headaches. It is not a migraine headache clustered with other migaraines. It is a Cluster Headache, which is totally different in diagnosis and treatment AND pain and it unlike any other headache.

The only type of pain that I am told compares in intensity and location is glaucoma, though I have no experience with that.

I sure hope your neuro knows what he/she is talking about, because your GP obviously has no clue.

Title: Re: Newbie here suffering from SEVERE headache
Post by Riccardo on Oct 1^st, 2002, 7:39am

Let me disagree, Revdeford.

My first two years with CH were at (MAX) Kip 8, and the attacks lasted 2 or 3 hours. (Furthermore..... hear! hear! During the attacks I remained IN BED!!!!)

In the last 23 years.... hmmmm.... it returned to the standard KIP 10/1 hour

Speaking about this, a couple of docs confirmed that CH CAN start in a atypical form, then became "standard"

Obviously I DO NOT disagree with you talking about that GP that is a fuc#ing mor#°n disinformed etc etc. Is the thing I also hate more.

Here in Italy many docs now diagnose as CH many patients that have not: they have HEARD of CH..... and BANG! diagnose wrong all the time!!.....

Title: Re: Newbie here suffering from SEVERE headache
Post by jonny on Oct 1^st, 2002, 2:27pm

The 14 yrs I went unmedicated there were plenty of 2-3 hour battles, I still dont know how I went all that time chronic with no meds...Oh!!!!, sure I do.....The really good drugs.....LMAO ;D

............................................jonny

Title: Re: Newbie here suffering from SEVERE headache
Post by emilysmommy on Oct 1^st, 2002, 2:37pm

Thanks for all of the replies! I was pretty sure the Dr. was incorrect when she made the statement about CH's, but I didn't wanna argue with her........

I started Elavil 25mg last night. It made me really sleepy so I thought I was gonna get some great sleep. I went to bed at 10 & was back up at midnight with another severe HA. Woke up at 5:30 okay, but at 8:30 had another. It takes a while for the severe pain to go away, but I still will have a mild headache all day. I'm so frustrated. I feel like this is taking my life away. I hope the Elavil works. I have been sleeping with ice on my neck and head hoping it would help but it hasn't. My Dr. appt. can't come soon enough. Half the time doctors don't realize the pain we're in. I have debated going to the ER a few times, but I know they'd just give me something like Stadol which would make me violently ill anyways!

Once again, I do appreciate all the replies. I feel like I probably do have Clusters. I know what a migraine feels like & this isn't one. I also know what tension headaches feel like too. Does anyone have any idea some causes for Cluster headaches?

Michelle

Title: Re: Newbie here suffering from SEVERE headache
Post by Linda T on Oct 1^st, 2002, 2:41pm

Dear Michelle:

Get as much info from this site as you can and give it to your neuro. As we all know here CH is NOT JUST HEADACHES THAT COME IN CLUSTERS. I, like RevDeFord, get completely irritated by remarks like that. We here all know that CH isn't even really a headache. It's just severe pain in and around your head! No relationship to a headache whatsoever!

During my first cycle I had CH attacks that would last up to 3 hours at a kip 9-10 so with CH anything is possible.

My son suffered with me as well, Michelle. There is no easy fix for that. My son was just 4 during this last episode and old enough to know something was terribly wrong. I also left my son for what seemed like hours at a time (although only for about 45 minutes 3-4X per day) while I jogged around my room or stood in a hot shower waiting for the pain to subside. I'm sorry to say that he spent a whole lot of time in front of the TV or watching videos.

Just remember, this too shall pass.

Wishing you all PFDAN always, Linda T

Title: Re: Newbie here suffering from SEVERE headache
Post by domm on Oct 1^st, 2002, 5:35pm

Michelle - I've had great success with Oxygen and Imitrex in aborting my clusters, but I believe these also work for migraines. The longest Ch I've had was about 90 minutes and it never really did go away for several hours after. I chalked it up to a rebound from too much other stuff I was doing to try and make the pain go away.
Through reading this board, I found Verapamil as a preventative and after three weeks (finding the right dosage) it has kept the beast at bay for 12 or 13 days now. I also learned how to use O2 correctly. I had used it before with very limited success, but after reading through the board, I found out how to use it properly.
Print this stuff out and take it to your doc. He or she should be reasonable enough to try some of these meds.
Good luck and welcome to the board
domm

Title: Re: Newbie here suffering from SEVERE headache
Post by emilysmommy on Oct 3^rd, 2002, 12:42pm

I spent the night in the ER last night because of the severe pain. The Dr. said the headaches sounded like clusters. I'm having constant headaches now. They start off severe & excruciating pain & then just dull throbbing pain the rest of the day. If they don't go away soon, I'm going to die. He did give me oxygen while I was there & told me that if it helped my ins. comp. may pay for it. They didn't run any tests since MRA came back normal a week ago. If this is a cluster, do they ever go away or am I gonna have to live with this for the rest of my life? The vicoden isn't taking the pain away.

Title: Re: Newbie here suffering from SEVERE headache
Post by Dave-hurts on Oct 3^rd, 2002, 12:58pm

Hey I'm a newbie at this message board thing and it's good to know that there are alot of people out there with my problem. I can't tell the difference between a cluster headache and a migraine. I'm in the military and everyone knows how these docs can be. My doc diagnosed me with migraines and I've been taking Imitrex, but before that I went to the emergency room at 2:00am and the doc said it was just allergies. So he gave me deconamine, zyrtec, and flonase. So I'm taking all of those pills plus the Imitrex. Is that good for me or what? I've gone back to the doc to tell him that I have them at night and this has been going on for about a month. The last time I had this problem was about a year ago and it was a painful time. I have all the symptoms of a migraine as well as a cluster headache. These headaches last for about 2-6 hours and I get them every other day. My mother suffers from migraines and my father suffers from allergies. Is it possible for allergies to trigger off these headaches. I've had headaches before but nothing like this. I feel like poking my left eye out or maybe cut my head off because the pain is so unbearable. So what do you think.

Title: Re: Newbie here suffering from SEVERE headache
Post by echo on Oct 3^rd, 2002, 1:45pm

Sorry to read you are having a rough time with the pain. Hope that emilysmommy finds relief very soon. Lots of combo drugs out there that will help prevent the pain. Reponses are seemily on both sides of the fence. I do agree that CH's operate differently in everyone, and the drugs to deal with them operate differently also. The CH beast is a mutant.

Title: Re: Newbie here suffering from SEVERE headache
Post by Dave-hurts on Oct 3^rd, 2002, 2:48pm

Hey thanks Echo for the support and confidence. As for Emilysmom next time tell the doc to give you some Demoral(hope I spelled it right). That stuff works wonders. I hate going home and having to tell my OIC that I'm having another episode. She understands because she gets them too, but all the other anal military personnel think it's just a little head ache and that I'm a puss or bubble boy. I then tell them have you ever had a headache. They say yeah, I tell them it's like a headache with a hammer or knife in your skull and eyes. They just say whatever and go on there way. Only if they knew.

Title: Re: Newbie here suffering from SEVERE headache
Post by echo on Oct 3^rd, 2002, 2:56pm

Dave, what always amazes me is those same people who give you a hard time about a headache will, if scratched on the arm, will normally act as if someone has halfway ripped their arm off. For CH sufferers it's yea - cut myself - need a bandade - no biggie.

Title: Re: Newbie here suffering from SEVERE headache
Post by Drk^Angel on Oct 4^th, 2002, 9:05pm

Rev... I don't know where you get your diagnostic criteria for CH from, but most medical professionals, and ppl on this board, use the Internation Headache Society's recommendations. This is what they have to say about the pain of CH:

Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15 to 180 minutes untreated.

That's 15 mins to 3 hours, so it would seem that 2 to 3 hour attacks would very nicely fit in the diagnostic criteria for CH.

Em... Welcome to the board! Sorry that the beast is beastin' your cranium into subspace with a rusty garden rake. Welcome to the family!

PFDAN......................... Drk^Angel

Title: Re: Newbie here suffering from SEVERE headache
Post by emilysmommy on Oct 4^th, 2002, 9:15pm

Hi everyone. I'm just wondering if anyone has tried indomethacin for treatment? I'm thinking that I may have hemacrania continua instead of clusters, but I have most symptoms for both. The thing that doesn't fit nicely into the diagnosis of clusters is the fact that my pain rarely ever goes away. It's not excruciating after a couple hours, but it's still there. I have a neuro appt. next week. Taking vicodin but it's not helping too much. Thanks for all the input!

Michelle

Title: Re: Newbie here suffering from SEVERE headache
Post by RevDeFord on Oct 4^th, 2002, 9:17pm

I have been reading alot today on clusters from other sources and they all say the same thing now - that clusters can last the 3 hours. Back when I started all of this a number of years ago, it was always that clusters lasted like 15 minutes to 30 minutes. I guess as education has improved, the time has increased.

I could not even imagine going 3 hours with one of these things. The longest I have ever gone was about 2 hours, and I was sitting on a guerney in the ER having a needle jammed up my nose. I thought I was having an aneurism or something because they were always gone in 15 to 30 minutes.

Title: Re: Newbie here suffering from SEVERE headache
Post by Drk^Angel on Oct 5^th, 2002, 1:23am

Em... Hemicrania Continua is a continuous, non-remitting headache. It sounds to me as though you are havin' attacks and shadows instead of one contiuous attack. And the main diagnostic criteria is a continuous attack for greater than 2 months. Indomethacin might still help you, because some CH patients do find that it works, it's just that the majority do not.

PFDAN............................... Drk^Angel