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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Finally found the answer?
        
(Message started by: Char on Jan 19^th, 2007, 1:51pm)

Title: Finally found the answer?
Post by Char on Jan 19^th, 2007, 1:51pm

Hi everyone. I have been lurking around the MB for the past few days. I took the cluster quiz and left a bit confused. But I guess I should start at the beginning.

Almost 7 years ago to the day I was rushed to the ER after having a major asthma attack. Unfortunately, by the time the paramedics arrived I was unable to tell them my drug allergies, which happened to be to asthma medications. To make a long story short I started having grand mal seizures which have continued even to this day.

About the same time I began having persistant headaches. They were horrible and since I wasn't allowed out of bed, when I wasn't seizing I would be laying in bed rocking non-stop. The pain was excrutiating, I couldn't even describe it. Even when it didn't feel like someone had an acetaline torch burning out my eye and top of my skull, I could still feel it there. It was like it was just waiting for a reason, a dull throbbing ache on the right side of my skull.

I begged my doctors to make the headaches stop, but they wouldn't do anything until they found out the reason for the seizures that wouldn't stop. They eventually did, a malformed artery in the brain, the right frontal lobe, which happens to be the side my headaches happen on.

When I brought this up they told me that they didn't feel the two were connected. Luckily the seizures tapered off to only about 1 or 2 a year, but the headaches havent stopped. The past week and a half have been hell. I have migranes and have been given meds to help with those, but it honestly does practically nothing.

Last time I went to the ER because the pain was so bad I was laying in the middle of the living room floor rocking in fetal position while banging my head on the tile, just wishing it would stop. They did a spinal tap to search for brain bleeding, a CAT scan to check for anything else and then started pumping me so full of morphine that I could do nothing more than drool. I couldn't move but the pain was still there.

I am honestly at my witts end. I don't know if I have CH's or if this is just a result of the artery. No neuro or gp has been able to make a decision. Honestly they can't even agree if its an artery or a mass of some sort in my brain...even after an angiogram.

But I have talked enough. I am sorry for being so long winded.

Title: Re: Finally found the answer?
Post by vietvet2tours on Jan 19^th, 2007, 2:43pm

Tried o2?

Title: Re: Finally found the answer?
Post by Char on Jan 19^th, 2007, 2:57pm

No I haven't. The first I heard of using O2 was when I started reading the boards here yesterday.

I have been on Depokote, Topamax, and Dilantin, seperately and all together. They have given me Maxalt, and some new one that I can't remember the name of it, starts with an F. Will have to look at it when I get home tonight. I have taken Imitrex and several other things that I never did get the name of as then gave them in IV's.

Title: Re: Finally found the answer?
Post by Charlotte on Jan 19^th, 2007, 3:12pm

Hi, Char. Welcome aboard.

If I understand this correctly, you docs don't see a connection between the artery and the ch type headache.

How often do you now get hit? How long does it last? Does it ramp up or does it just hit, bam? Is it continuous with dulling down, or do you have pain free time in between?

Does your doc currently have you on seizure or blood pressure meds and, if so, have you noticed if they affect your headaches, even by 10 or 20%?

Good luck. I don't have a clear diagnosis, either.

Charlotte

Title: Re: Finally found the answer?
Post by Char on Jan 19^th, 2007, 3:20pm

Hi Charlotte,

Ever since all the seizures I have a constant ache on the right side of my head, but then there are times when its like some just jabbed an icepick into my eye at the same time they turned a torch onto the inside upper part of my skull. There are days when I can ignore it and act like its not there, and then there are days when its so bad I can't even leave the house because I don't dare get behind the wheel of my car.

I am no longer on the seizure meds as they were giving me problems and they had too much difficulty keeping my levels to stay consistant. They also found that I tended to have fewer seizures when I was off the meds.

I have never noticed any difference between when I was on the medicine as when I wasnt.

Title: Re: Finally found the answer?
Post by Charlotte on Jan 19^th, 2007, 3:30pm

Have any of your docs tried Indocin? There are several similar headaches (ie: Paroxysmal hemicania and hemicrania continua) that respond to Indocin. One needs to be careful if trying it because it's hard on the stomach. I use a time release and it helps as long as I'm also taking my kudzu. I also use maxalt melt, and am trying verapamil again.

Also, many of us get more than one type of headache, and they each respond to different meds.

Did your docs say artery can be repaired?

Charlotte

Title: Re: Finally found the answer?
Post by Char on Jan 19^th, 2007, 3:41pm

Hey Charlotte,

No they haven't given me anything lately other than my GP giving me the new migraine med that I can't remember the name of.

The artery they say is not repairable. They say that the risks of surgery are greater than the risk of leaving it alone. My last neurologist said that 'as long as it doesnt burst, then we don't have anything to worry about.' Not sure if I like a neuro with a sense of humor.

Title: Re: Finally found the answer?
Post by lionsound on Jan 19^th, 2007, 10:04pm

Hi Char,
I get clusters and migraines and a few other types of HAs.
have you ever seen a headache specialist? Not every neurologist is a headache specialist, even if they claim to be. I think it's time you see one for a proper diagnosis.

Please ask your neuro if he knows anything about clusterheadaches and print things from this site if you need to t help with diagnosis. Ask for Oxygen. it helps my migraines and my clusters. If you have CH ..some meds work for migraine and CH.

please be well,
lionsound

Title: Re: Finally found the answer?
Post by Nancy on Jan 20^th, 2007, 1:51am

Char,

I am not a doctor, but it sounds like clusters to me. How long does the pain last? If you say anywhere from 20 minutes to 3 hours, then welcome to the club. They misdiagnosed my clusters for 20 years, they kept telling me they where migraines. I hope if you have cluster they will go in remission soon. I just came out of remission after being in it for 3 years. steroids usually put them right back in remission, but they are not working this time. I start taking them again tomorrow, and pray they put them to rest this time.

Good luck to you,

Nancy

Title: Re: Finally found the answer?
Post by Char on Jan 20^th, 2007, 7:23am

I guess my biggest frustration has been the fact that all the neuro's I have seen to date have ignored my headaches. For the past 7 years when all of this started I haven't been without the constant pain. The constant background ache I have learned to mostly ignore, but its the periods, kind of like now, that makes me want to crawl into a hole and scream. I go to the ER at times because its so bad I can't even see and then they start doing spinal taps to see if my brain is bleeding again, but they don't even try to find out why. A gentleman on this site has sent me a list of neuro's from the OUCH site that I am going to start calling on Monday. Its finally gotten to the point where I have to do something. Living like this is just getting old. I keep missing work, my daughter says I am no fun anymore. AHHH I'm tired of whining. Thanks all for being so willing to offer suggestions and support.

Title: Re: Finally found the answer?
Post by lionsound on Jan 20^th, 2007, 7:41am

on 01/20/07 at 07:23:31, Char wrote:

I guess my biggest frustration has been the fact that all the neuro's I have seen to date have ignored my headaches.

I have felt the exact same way. I now go to the New England Center for Headache ...a 5 hour drive from me because i was so upset and frustrated and becuase NECH is one of the best and I decided I was worth it.
So are you! You are worth the extra effort for yourself to feel better!! :)
You can kind of interview the doc before you go and ask their specific experience with cluster headaches and multiple headace types. Rememeber that you are the customer.

Also if you end up back in the ER ask them for oxygen to treat you right away.
Good for you for being proactive!
PF's
-lionsound

Title: Re: Finally found the answer?
Post by swimchica623 on Jan 22^nd, 2007, 10:27am

Hi Char....sorry you are in so much pain. I was just wondering, have you been on long term prednisone for your asthma? When I first started having CH my drs wondered if I had a pseudotumor, and it sounds like there is a possibility that you might have that, especially if you have been on long term steroids for your asthma. I have severe asthma and was steroid dependent for two years. I got off thanks to xolair. I have a friend who also has very severe asthma that started having neurological issues the same time I was..it was very strage...and from what she told me it sounds pretty similar to what you describe. She was having seizures too. The pain level would escalate to the same pain level of a cluster, but not all the time and she is always in some kind of pain.
If your doctors are wiling to work with you, which it sounds like it, I would ask them for a spinal tap to rule out a pseudo tumor, ESPECIALLY if you have been on lots of predniosone because this can put you at a higher risk for developing one. I don't know much more about these than what I told you, but I would stroooongly suggest you go to your dr and ask for the test.
Hope you are feeling better soon and get this figured out!!!!
Lisa

Title: Re: Finally found the answer?
Post by Char on Jan 22^nd, 2007, 7:55pm

Hi, Lisa.

Thanks for that information. Nothing has ever been said to me about the psuedotumor, but as soon as I can find a doctor that will see me now that I don't have insurance I will certainly bring that up. As for being on prednisone, I am only on that when I have an attack and then its just a medrol pack. Though sometimes they put me on it for a couple extra weeks. They don't do it often cause prednisone makes all my joints swell and hurt so its one of those last ditch efforts. I am so chemically sensitive that me taking anything is touch an go. What I could take one day causes nasty problems the next. My GP wont give me anything unless he has a sample to give me in his office first, then he makes me stay there for an hour or so to be sure I don't have a bad reaction.

This weekend was really bad for me, I spent all my time indoors because I hurt so bad I was nasty to everyone that came near me. I am so thankful that my fiancee and daughter are so understanding. They may not understand the pain but at least they don't try to make me feel badly about it.

Title: Re: Finally found the answer?
Post by chewy on Jan 22^nd, 2007, 8:27pm

Quote:

pumping me so full of morphine that I could do nothing more than drool. I couldn't move but the pain was still there.

That speaks volumes.

Title: Re: Finally found the answer?
Post by vietvet2tours on Jan 23^rd, 2007, 12:14am

Is a pseudotumor(notice the spelling)sort of like a brain cloud?

Title: Re: Finally found the answer?
Post by swimchica623 on Jan 23^rd, 2007, 6:30am

They are severe headaches caused by low and high pressure in your brain....or something like that. I only know what my friend has told me. I just learned from this article that it's associated with weight problems, so that's why you can get it when you take prednisone for a long time....damn drug made me gain 30 pounds. It comes off when you aren't steroid dependent any more though.

http://www.emedicine.com/neuro/topic329.htm

Title: Re: Finally found the answer?
Post by brewcrew on Jan 23^rd, 2007, 4:51pm

on 01/23/07 at 06:30:21, swimchica623 wrote:

....damn drug made me gain 30 pounds. It comes off when you aren't steroid dependent any more though.

It might when you're in your 20's - maybe even your 30's - but after that, you have to WORK at it, God dammit! ;;D