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        New Message Board Archives >> 2002 Posts >> Thanks for the welcome- Full info for me
        
(Message started by: Melissa11-8 on Nov 24^th, 2002, 8:07am)

Title: Thanks for the welcome- Full info for me
Post by Melissa11-8 on Nov 24^th, 2002, 8:07am

Sorry I was brief the other day - I was in the midst of an attack scared and alone. This is my background.

First - I have now researched that my past migraines ARE separate and different from what I am experiencing now...

I have suffered migraines since I was 16 (14 years) then this past summer my headache changed. I wasn't throwing up, I was waking up with night sweats, my right eye (same side as the migraines - now I wonder if they were ever migraines at all) was buldging out like a cartoon caracter. But at that point in July a shot of Imetrix followed up by a trip to the ER for pain meds took care of it.

Then in Sept I got married, I work in Pharmaceuticals (the irony of it all I have a degree in Chemistry by get majory sensitiviy -headache -issues working in labs that have vascodialator drugs so now Im out of the lab in a technical writing position so my poor eyes are on a computer screen all day).

Well in my amazement I got through the wedding with only one need to treat with Maxalt ( 2 days before the wedding) .I had before and after the wedding been good about eating sleeping all the stuff that they say makes a difference but in the end really who knows.... anyway...

On 11-8 I was at work typing and my sinus on the right side started to "fill up" (Just like in July) my eye got blood shot and started tearing. Out came the maxalt and I went out to my car and layed down for an hour. Felt like garbage but didn't want to take the hour drive yet so I stayed at work. Got home about 4 hours later was tired but not "sick".

Went to bed and about an hour later woke up my shirt was drenched in sweat, my eye and right side of the top of my head was in so much pain, the inner ear on the right felt swollen , but Im not throwing up..must be luck.. OUT to the ER.

Well that was a Thursday around midnight. Saturday afternoon the pain was still in my eye. Figured it was a sinus infection went to an emergency office (not hospital) they said nope a migraine, gave me Toradol (1:30 pm Sat)- 4:30 pm Sat back out to the ER for Dilauton this time. What was strange I thought was they gave me this narcotic and I can't sleep. Im exauhusted and I can't sleep. But I was in so much pain that I couln't even think. Then early Tuesday morning the gauntlet dropped! I started having pain took a percocet and tried to sleep about an hour later oh my lord! I have never experienced Hell before!! I stuck it out from 1:30 to about 5 am so that at least my husband could get a full night's sleep then I'd go the the ER. I had been to my Dr on Monday and he had already mentioned admitting me to the hospital for pain management and testing.

So Tuesday we go in and get admitted(now 11-12) they ran a CT, pregnacy test, MRI and had me see a neurologist. They put me on a steroid by IV, demorol and Imitrix for pain and Topamax. I stayed at the hospital for 3 days (Diagnosis Staus Migraine) , the "Pulling" behind my eye finally subsidded by the headache never did. But I found that I couldn't "sleep" in the hospital. Told myself that they kept waking me up.

I went home on Thursday that weekend went down hill - Sat - Monday in bed. Saw my primary on Monday he spoke to the neurologist. They put me back on the steroid and increased the Topamax.

Wednesday evening (11-20) went to bed with my head bothering me, loaded up on meds to try to sleep (Ive now figured out this is not a solution) and at 2:30 back to the same horrible pain I had ever felt. Thursday AM back out to the ER. Where they gave me Oxygen (at the time I thought they were crazy) and dilauoton for the pain. I then went to my Neurologist who then adjusted my diagnosis to Cluster Headach Cycle. He thought it may have been brought about by a virus as he has seen a dramatic increase in the number of clusters that he is seeing right now. On Thursaday he kept me on the steroid, topamax and added verapamil. I have seen some change in me since adding verapamil, but I can't identify it. I think that the episodes (last week had 6-8 a day) are less frequent but the ones that I am having (3-5 a day) are lasting longer

My concern is that Im not sure that Im getting any better, my sleep is now almost non existent. The hot flashes I can set my watch to then 40 minutes later full on pain. I take the meds, but it hurts more to lay down then sit up. Last night I think I slept a total of 4 - 45 minute intervals. It's crazy, now Im tired but it hurts to lay down.

I guess my main question is that is this something that I can be active in my own care or is this really a sit wait and see? And as it is my first episode, realistically how long am I looking at. I am on disability right now. I can't walk 20 feet with out grabbing onto something. By dr said 4- 6 weeks, but Im seeing 6-12 week in most articles Im reading. And if you "push" yourself into life too early does it open you up to relapses?

Thank you all for your help! It really makes a difference (it is a HUGE RELIEF) to know that there are people who understand what you are going through.

Oh and what is making my skin itch - the prednisone?? Im at a step down rate and I droped yesterday from every 12 to every 24 hrs and Im itching here!

Have a great Sunday and thanks for everything~

Title: Re: Thanks for the welcome- Full info for me
Post by 2late on Nov 24^th, 2002, 9:12am

first of all welcome ( i missed your first post) it's hard to answer that question some are episodic, some chronic, how long it will last can very. i recommend you talk to your neuro about immitrex injections & oxygen as abortives they work wonders for me & alot of others around here. oxygen is excellent if it helps you cause it's pretty benign & no sides. good luck to ya! ..........2late

Title: Re: Thanks for the welcome- Full info for me
Post by eyes_afire on Nov 24^th, 2002, 9:33am

Hi Melissa. If you are a clusterhead, CH is definately something you will probably need to be proactive with because many doctors aren't knowledgeable enough. Some docs are reluctant to prescribe a high enough dose of verapamil (maybe up to 960mg). Also, many clusterheads find that the regular release verapamil is much more effective than the sustained release. If you try oxygen as an abortive, you'll need to make sure to get the proper mask, regulator, and flow rates.... it makes a huge difference... the nose thingys for oxygen are useless.

You might want to do an internet search on topomax or prednisone to see if they list itching as a side effect. I'm sure the side effect list for both drugs is very long.

There is really no way to tell how long a CH cycle may last. My cycles usually lasted 6 months, but my most recent one has been 14 months long (hopefully now it's finally ending). But the length of cycles varies greatly from one person to another. In my opinion 'pushing yourself into life too early' does not increase the possibility of relapse. For me, cluster headaches seem to happen whenever they want to regardless of what I do or eat. The only 2 things that I can say for sure that aggravate cluster headaches are alcohol and sleep.

Title: i'm now dizzy too
Post by rumplestiltskin on Nov 24^th, 2002, 9:49am

Clusters can and are often mis-diagnosed. It sure ain't my job. I'll address yer questions.

Quote:

I guess my main question is that is this something that I can be active in my own care or is this really a sit wait and see?

Yes and yes. Information about our miriad of tools are available at the site for just that. Links, archives, etc. Unfortunatly,we too often must co-direct our med schedule with a doc due to their limited knowledge of Clusters. You are yer best advocate...Now....as to "wait and see"...too often we don't give a pain management technique time to work. The dibilitating horror of Clusters makes one yearn for instant relief or a gun. Many factors...like O2 not administered properl, or the fact that meds like Verapamil take a couple of weeks to start working often put us in the "this shit ain't workin" frame of mind.

Quote:

And as it is my first episode, realistically how long am I looking at.

Like tryin to nail jello to a tree. Just figure you'll be a Clusterhead fer life...packing yer life into into any Painfree times you get.

Quote:

I can't walk 20 feet with out grabbing onto something.

Get a cane...or only plan 19 foot trips.

Quote:

And if you "push" yourself into life too early does it open you up to relapses?

By definition...they are Clusters...a series of headaches which starts and stops...theories abound as to what initiates them or why they suddenly stop for 3 months, 2 years, 20 years. We are back to nailing jello. Hitch yer wagon to a star and get on with it as best you can. For myself, Clusters have been traditionally "relaxation headaches"...when working, active, stressed...they stayed away. When I relaxed they hit me. A nightmare for a lazy person like myself.

Nothing works fer everbody...something works fer everybody. Keep a journal. Get to know yer beast.

good grief
den

Title: Re: Thanks for the welcome- Full info for me
Post by domm on Nov 24^th, 2002, 11:05am

Melissa - great advise above. Its better to get pissed off than pissed on. Take charge of this and if nothing else, at least you'll feel like you're doing something. Try to stay positive.
Keep us posted - PFDANs to you
domm

Title: Re: Thanks for the welcome- Full info for me
Post by pjbgravely on Nov 24^th, 2002, 3:30pm

Melissa, Try sleeping in a recliner, also does my pic look like your eye? PJB

Title: Re: Thanks for the welcome- Full info for me
Post by Drk^Angel on Nov 25^th, 2002, 1:16pm

Welcome to the board! Sorry that the beast is doin' a drum solo on your cranium, usin' sledgehammers as drumsticks. Good luck!

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

Title: Re: Thanks for the welcome- Full info for me
Post by Charlie on Nov 25^th, 2002, 6:30pm

Great advice above. I like to repeat that while it's a good idea to surround yourself with the lastest wonders from the pharmaceutical industry and whatever wacko technique you may find here, don't sit around contemplating your next attack. It's a waste of precious PF time.

Also, as was stated above, sleeping in a recliner can work. It almost always knocked one a day off my CH count and that's sumpin'.

Keep up the good fight

Charlie