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New Message Board Archives >> Medications, Treatments, Therapies 2002 >> All about my dances with the beast..
(Message started by: karpieldisco on Nov 13th, 2002, 7:53pm)

Title: All about my dances with the beast..
Post by karpieldisco on Nov 13th, 2002, 7:53pm
As I mentioned yesterday, in my second post on the board,  i have been dancing with the beast for about 5 years.  When they first bagan to hit I noticed the pain more in my left temple than behind my eye.  i called them headaches and thought I was a wimp..  When to the dr and had a MRI..  Nothing..  doctor put me on some little red pill and said these are blood thinners they will help you...   my thouth process was- hey I race downhill bikes, lets mix that blood thinners and see if I can really mess myself up..  Well needless to say I didn;t like that doctor.  So I relied on self help.  Diagnosed my headaches as alergies, took claritin d and about 6 Excecrine migranes a day.   When the beasts would visit ( Liz)  the love of my life and the only one in my family that knows really the hell we go through, would rub Tiger balm on my temple and around my eye till the pain was so strong I either fell asleep or better yet passed out from exhastion from my battle..  

That went on for about 2 years or so and then I met with another doctor who put me on darvocet, percocet and codine  at the onset of a headache.,  This was great ( yo dude) but it didn't work with my lifestyle and besides the office nurse stated that they were controled substances and could not be in the office.  Drat!!  my enjoyment was gone.  that was about 2 years..

Well finally I met with DR. Wolf, in Baltimore, and we are on to the beast...  I do a little dance but I have come out on top most of the time.  When I first went in to Dr. Wolf my ch's were so bad tht I was rushed to the er with a ch so bad that spooning my eyes out was on my mind.  My left eye was swollen shut and there was blood comming out my eye..  this is when I knew there were serious issues.  ( never go the er- i sat for 5 hours before i ws  visist by a doctor..   I  was people with sprained wrists and ankles go before me..  )

Anyway last may i met with Dr Wolf and he suggested that we try Norvasc 5 mg daily with  shots of imitrex if needed at onset of pain.  I was very impressed with teh outcome of the meds..  Imitrex   got rid of the bease in about 10 min.  I ws in heaven .    Well this jsut cpontrolled the onset of the headaches but didn't top them .  So we went on a prednosone cycle.  8 days at 8 pills a day on teh 7th day asn eery day after decrease my one.  Oh my..  what a trip I was on ..  One day I was in the clouds emptionally then the next I was in the dumps. anyway this killed my cycle. and I have been headache free for 6 months or so till this week.  When i got 4 in 2 days.  Nowever i have to say that I do notice that the norvasc does appear to be working cause the ch are about a level 5 out of 10 where last cycle they were all 10+..  We have tried increasing the norvasc to 10mg and it appears to be helping..  I have not had a ch in 2 days. however I am watching what i eat, when I sleep and am always afraid to close the eyes in fear of the beast...  Oh an I just got my O2 so i am ready to try the new  process..

So there you have my medial history on the meds I have taken..

I do have some questions for you all..  I totally feel like i have been hit by a mack truck when I  recover from a ch.. Is this normal?  i really feel like I have been out booz-in it up all night in the head.  I feel dilusional and jsut not with it.. There have been many days that I have had to stay home from work due to total exhaustion after a session.  I am the person that never missed work...  prior to ch's.

Does anyone know it they can be stress induced  or allergy induced, or it they are run by  how we sleep or how long we sleep.. I have tried to test different things but I havn't come to any conclusions yet..

I can say that Beer, MSG, Wine, Smoke, oranges ( citrus juices), banannas, sex,  sugar overload, being hungry, sented cancles, stuffy air  will instantly bring a ch on if i am in session..  However at the immediate onset of a ch, Coke not Pepsi (coke) will sometime stall the ch..

Does anyof this sound familar to any of you .   Will post more later..  ( also looking at computer screens will also bring it on..  hence I am done right now.  I am getting teh little tingle behind the eye..  My tall tell sign,.. But it still early in the feeling.  IT will probably abort.. 


Title: Re: All about my dances with the beast..
Post by suzy617 on Nov 14th, 2002, 2:39am
I have never heard about blood coming out of the eye. That would totally freak me out. As far as being allergy induced, most say no but as soon as my cycle starts I get a really bad cough and it lasts as long as my cycle so who knows.

Title: Re: All about my dances with the beast..
Post by BobG on Nov 14th, 2002, 7:02am
Most your description sounds like you may have cluster headaches but, in my opinion, and its only my opinion……………

"till the pain was so strong I either fell asleep"
If you fell asleep during a headache, it wasn’t a cluster headache.

"blood comming out my eye" You are right. That is serious and needs to be checked. Clusterheads get a swollen, blood shot eye but bleeding? Not cluster related.

"stress induced"  Nope. Many attacks come on during REM sleep. Not much stress there. More likely when relaxed after a stressful period.

"allergy induced" Maybe but probably not.

Title: Re: All about my dances with the beast..
Post by karpieldisco on Nov 14th, 2002, 4:53pm
bobg- thank you for catching the part about falling asleep..   i agree with the fact that with clusters you can;t fall asleep in fact I don't even sit still..   the interesting thing about my headaches is that when the started they were in the left temple area of my head not  behind teh left eye..  These may have not been clusters since this type of headache disapeared after i left a position that had a dirty air system...  There was never any confirmation that they were actually clusters but they were the start of the headaches that made me realise that there were not normal/.  I am still wondering if they were migranes.  ??  As long as they are not here i don't care..  

asd far as the bood from the eye..  That is when I went to the hosptl and they advised me that it was from the swelling around the eye and it caused excess pressure on the tear duct..  It has not happened again.  

Had the beast visit today while at work..  About a 4:  it is always nice to see if every once in a while though so that people understand that these things are serious and are not to be taken lightly... my boss looked at me and said, " are you ok"  I adv him of what was going on and teh look on his face ws priceless..  He could see the pain.  and it wsa not even a 10* or more...  

Quick question for you all.  When a ch hits do you get a cotton mouth feel and crave liquid?  I noticed this for the first time today and I really don;t know if it typical for me or not..  let me know  

Title: Re: All about my dances with the beast..
Post by Squale on Nov 15th, 2002, 4:22pm
No thirst here when I have a brain-burning session.My throat is an area the intense pain visits during its path of destruction.CO2 helps most of time but sometimes when the pain moves to throat area I cant breathe in the cold feeling of oxygen and rip the mask off until it travels to another area of my head(rt.side).

Title: Re: All about my dances with the beast..
Post by karpieldisco on Nov 16th, 2002, 7:51am
it travels to another area of my head(rt.side).

So your ch's travel??  I always thought they hit the same area??

Title: Re: All about my dances with the beast..
Post by Squale on Nov 16th, 2002, 8:32am
oh yes my pain moves. it starts in temple,then behind eye,then inside ear,then teeth and gums,then jaw,then throat,all in same general area,sometimes every area hurts at same time,sometimes it just takes turns randomly alternating areas,but,there is always the behind eye and temple pain.

Title: Re: All about my dances with the beast..
Post by karpieldisco on Nov 16th, 2002, 9:34pm
that sucks..  since i was diagnosed with CH's and not random headaches they always have been isolated bend the eye..  Left eye..    I have not noticed any other areas that are isolated with pain..



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