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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> new doc. on monday  questions??
        
(Message started by: ski2k on Dec 12^th, 2004, 5:50am)

Title: new doc. on monday questions??
Post by ski2k on Dec 12^th, 2004, 5:50am

I,m new to the board, and new to a computer(last guy in america), but I,ve had clusters for at least 16 years.
Love all the Info on this site, 'cuz I never Knew much about the beast.
Just started looking into this problem a couple of years ago, and only half-assed at best. But now I'm determined to find out whats wrong with me. My last couple of cycles (4 month stretch, about 1 1/2 yrs.apart) seem to be getting much worse. Not uncommon for me to get 8 or 9 CH a day....most kip 8 or more!
Well I'm seeing a new doctor on monday. Young guy and seems concerned (I met him through a friend).
So what are THE questions to ask about?
Prevention?
Abortives?
What???

Any advice would be GREATLY appreciated !!!!!
THANX!!

Title: Re: new doc. on monday questions??
Post by Filbert on Dec 12^th, 2004, 6:24am

Hi ski2k
Welcome to the board but sorry you have to be here! Re your questions, if you haven't already, read up all the medical info here as it's pretty damn good. There are many options open to you. Oxygen might be a good place to start as it's less intrusive as some of the other meds and works well for many.

Hope you get something sorted soon!

All the best Filbert.

Title: Re: new doc. on monday questions??
Post by allan_r on Dec 12^th, 2004, 9:17am

Start with his experience with cluster headache patients. We are all unique, and hopefully your doc understands this.

Read everything on the board and on the links therein and be armed with the treatment options. If you are in cycle, the typical treatment options will be to look for abortive treatments -- those that stop the HA as it happens, and preventive treatments, those that stop them from occurring.

Abortives are -- as you've learned, few and far between. They are also hit and miss O2 works for most, Prednisone works for most, Imitrex works for some, etc. Talk to your Doc about them all.

Also, with length of time of previous cycles-- look for preventive med. If you have regular cycle, and it may soon be over, maybe finding abortive med that works is way to go-- some prevents MAY cause cycle to last longer in some patients. All these choices are yours. This basic infor is available at the links on the left.

But most importantly, ask your doc about how far he will go in being available or in writing alternative prescriptions or having contingent treatments available in his office if you need to call in for them.

Doctors are notoriously unavailable and hard to get ahold of. Especially when the first round or two or three of the treatments aren't working. I would just ask for all doc's numbers and his availablility-- and don't leave your appointment without developing a set of contingency treatment plans on the abortives and adjustments to the prevents you agree to put in place.

By this I mean, have a plan of how you will adjust the meds and/or treatments in your orders if they don't initially work before you go. Doctors are hard to get to. If you agree that you will initially try e.g. prednisone and verapamil and that the verapamil will be at x dose then up to x dose then up to x dose, then if need be up to x dose, etc. that third order will be ready to go and you will not be trying in vain to reach the doctor, or his staff will be able to call it in from his notes, etc.

Same goes with abortives. Try the o2 first. if not working, then try this or that. If the order or prescription is written (or in hand) Saturday at 4AM when you need to try the next step you can.

Just a thought - but I found that my doc was more than willing to accomodate these contingencies and have them in place -- as well as a script for my wallet for 02 in case i need to go to the ER and want to save time and energy in arguing with them.

allan r.

Title: Re: new doc. on monday questions??
Post by Bob_Johnson on Dec 12^th, 2004, 9:51am

Allan offers important advice. Probably the biggest problem we face is that Clusters are so uncommon that many docs have no useful experience in making the diagnosis or treating. So, the starting point is to seek somone with experience/skill and not just good intentions. Research has been posted here showing that it often requires seeing several docs before finding one who has skill/knowledge, hence, the need to probe this area BEFORE getting into the specifics of your case.

Look at "meds" (left) and print out. This will give data on what works for folks here. Also explore, and print out, material from OUCH. Take all with you as talking points.

Look over: WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.

For the long run learning, get either of these books for your personal education:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: new doc. on monday questions??
Post by ski2k on Dec 12^th, 2004, 1:35pm

Thank you so much for all your help and advice!

I am eposodic now (have a mild CH even now...about a kip 3), so I think abortive is the most pressing thing on my agenda.
O2 seems to be rather popular and I've never tried it. Might be a good place to start.

Will definately be refering the doctor to this web site if he's not overly familiar with the beast. Seems like the kind of guy to do anything to help his patients.

Thanks again guys !!!!! PF wishes !!!

Title: Re: new doc. on monday questions??
Post by indydebby76 on Dec 13^th, 2004, 9:15pm

HI EVERYONE! I'M 28 YEARS OLD AND HAVE HAD TREMINDUSILY BAD HEAD ACHES SENSE I WAS 9.I FEEL LIKE A GINNY PIG OR HOW EVER YOU SPELL IT LOL.FROM THE TIME I WAS 9-13 YEARS OLD I WAS DIGNOSIED WITH CH.WELL THEN NEW SYPTOMS CAME.SMELLS,PIXY DUST, NOSE BLEEDS,PASS OUT.THEN I WAS DIGNOSED WITH SEIZURES.WELL WHAT KIND THEY NEVER KNEW.I HAD HAD OVER 100 X-RAYS,MRI'S AND CAT'S AND MED.I TRIED TO KILL MYSELF TO MANY TIMES BEEN HOSPILIZED 2 TIMES CAUSE OF IT.AND MANY PAIN SHOTS AND TRIPS TO DOCTOR OR ER.WELL I WAS SEEING THIS NUROLIGIST AND THIS 24 EKG SHOWED I HAD A MASS ON MY UPPER LEFT SO THEY DID EXPERIMENTAL SURGERY.DEC 9 10 YEARS AGO THAT WAS THE DAY MY LIFE CHANGED I FOUNF OUT I WAS PREGNANT.YIPPEEE! WELL I STILL HAD BAD KILLING ME HEADACHES BUT COULDNT TAKE MUCH BEING PREGNANT. I HAD SEIZURES UP UNTILL MY LITTLE GIRL WAS 2 WEEKS OLD THEN WHAM THE HEADACHES AND SEIZURES WERE GONE.THEN WHEN SHE WAS 17 MONTHS OLD HELLO THEY WERE BACK BUT WORST WITHOUT SEIZURES.THE DOCTOR PUT ME ON BIRTH CONTROL.THAT DIDNT WORK. SO ISOLATED MYSELF FOR ABOUT 4 MONTHS AND BOOM THEY WERE GONE AGAIN.THEN 2 YEARS LATER HELLO I'M BACK THEY WERE BACK AGAIN.CONSTANTLY.THEN I WAS HEADACHE FREE FOR ABOUT 3 YEARS UP UNTIL JANUARY 2004.I HAVE HAD A CONSTANT HEADACHE TOTTALLY OFF THE RECTOR SCALE THE WORST PAIN I HAVE EVER HAD.NO RELIEF AT ALL MY BODY IS SO WORN OUT AND I'M READY TO GIVE UP BUT THE ONLY THAT HAS KEPT ME HANGING ON IS MY DAUGHTER WHO IS 9 NOW.I GO TO AN ENT DEC 20 THE NEW NUROLOGIST THINKS I HAVE A SINUS DISEASE MAYBE SURGEY AGAIN I DONT KNOW.BUT NO MED OR THERAPY HAS HELPED ME.HELP THE PAIN IS TO BEARABLE.(NO NOISE NO LIGHT NO NOTHING WHEN IT IS THE WORST.I PULL MY HAIR OUT.I BUST MYSELF IN THE HEAD WITH MY FISTS.I CRY I SCREAM I ROCK .NO SLEEP.IF I DO I DREAM OF BLOOD THEN WAKE UP TO MY NOSE BLEEDING.IT WILL BE 1 YEAR IN JAN WITH THIS GRUSEUME PAIN.I'M ON BP MED NOW.GO TO ER OR DOC 1 TIME A WEEK FOR SHOT.ALL THEY DO IS KNOCK ME OUT.BUT ITS NOT ON THE SIDE OR FRONT OF MY HEAD ITS IN THE BACK WHERE THE NECK BENDS.YOU KNOW HOW YOU FEEL THE BACK OF YOUR HEAD AND IT FEELS LIKE THERE IS A WHOLE THATS WHERE THE AWFUL PAIN IS .MY HEAD HURTS 24/7 .YOU KNOW WHEN YOU HIT YOUR FUNNY BONE HOW YOU GOT THAT DULL ACHE THATS HOW MY HEAD FEELS ALL THE TIME EXCEPT 2-3 A WEEK ITS 100 TIMES WORST.MY VISION MESS UP MY SPEECH MY THINKING.IT HAS REALLY TAKIN OVER MY LIFE AND BODY.
I KNOW THIS IS A LONG STORY BUT I DONT KNOW WHO ELESE TO TALK TO WHEN I TRY TO TALK TO MY FRIENDS FAMILY OR DOCTOR THEY LOOK AT ME LIKE IM CRAZY.I HAVN'T BEEN ABLE TO LAY ON MY BACK FOR ALMOST 1 YEAR NOW IT HURTS TO HAVE ANY PRESSURE ON THE BACK OF MY HEAD OR NECK.THE TESTS KILL ME.I'M TIRED OF THE PAIN AND NOT HAVING A LIFE
H E L P M E !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Title: Re: new doc. on monday questions??
Post by ski2k on Dec 14^th, 2004, 12:29am

Hello
indydebbie76!!

Welcome to the site, and sorry to hear about your pain.
I'm new to the site too, but I've had clusters for about 16 years.

Following some of the advice I have found on this site, I would recommend taking the cluster quiz on the left to see if that is what you may be dealing with.

Also, just look around the site. Theres lots of good info here, and links to other sites.

Hope you find relief soon !!

Title: Re: new doc. on monday questions??
Post by RichardN on Dec 14^th, 2004, 2:11am

Hey ski - how'd the doc visit go?

Get your 02? Hope so!

Let us know/

Richard

Title: Re: new doc. on monday questions??
Post by don on Dec 14^th, 2004, 5:36am

Quote:

indydebby76

Locate your "Caps Lock" key and push it.

Title: Re: new doc. on monday questions??
Post by ski2k on Dec 14^th, 2004, 8:44am

Richard...
Thanks for your concern.
Meeting with new doctor went well. I was suprised to find he knew a fair amount about the beast, and was very interested in hearing what I had to tell him about it. As I posted before, he is a new young, and new, doctor, who doesn't have a lot of patients yet. He said he is available almost anytime I may need him, which is good to know. Tries to get all his patients in the same day they call for an appt.! That is almost unheard of around here!
I told him about this site and all the associated links and that seemed to interest him too. I think I found a good one here. What he lacks in experience, he seems to make up for in willingness to learn and help.
He did prescribe O2 for me. I'm trying to work some insurance details. They want to bring me a machinefor the O2.
Most people use tanks, don't they?

And to Allenr...
Thanks for the advice on setting up a contigency plan. He gave me a prescription to fill if the O2 doesn't work.
It was a script for stadol. I know narcotics don't work for most, but it has helped me in the past. I asked for it, he didn't offer. Doesn't kill the HA, just makes me not care I have it. Also helps me sleep(don't do that much anymore). Seems like a good place to start anyway.

Thanks again for all the advice & support.

Ski

Title: Re: new doc. on monday questions??
Post by nani on Dec 14^th, 2004, 9:09am

Welcome ski...glad you got what you need from the doc. Keep us posted on how well it's working. Sorry you had to find us, but you'll find this is a great place for info and support. :)

Indydebby- please get to a neurologist and confirm a CH diagnosis. There are many treatments available, and you don't have to suffer the way you do. As was suggested, look around here and gather information. Take it with you to the dr. I hope you get some relief.

Title: Re: new doc. on monday questions??
Post by ski2k on Dec 14^th, 2004, 9:27am

Thanks nani and all concerned.

I will keep you posted as to what is and isn't working for me.
Ya know, I've been to the ER many times with a CH and have been asked on several occasions " have you ever tried oxygen?" , but that is as far as it went. They never actually gave me any, so I will be very interested in seeing if this actually works.
Well, thanks again !!

Ski

Title: Re: new doc. on monday questions??
Post by vig on Dec 14^th, 2004, 9:41am

Hi IndyDebby...

"THEN NEW SYPTOMS CAME.SMELLS,PIXY DUST, NOSE BLEEDS,PASS OUT"

TTTTell me about this Pixy Dust...

Title: Re: new doc. on monday questions??
Post by taraann on Dec 14^th, 2004, 10:43am

Hi Ski2k and welcome to the board. Be careful with the Staydol. I've been on it a couple times, it took the edge off the medium Ch's and also helped me nap some BUT it's very addictive. I build up a tolerence to it quickly, at first all I need is half a squirt and before long a whole squirt doesn't even do it. My old doc kept prescibing larger and larger amts for me until I said enough. Then coming off of it was HORRIBLE. Thankfully I was only addicted physically and not mentally. Withdrawals are not a cake walk, esp when dealing with CH on top of it. IMO it's good for short term, but that's about it.

You really need a good preventative, and alot of ppl find a prednisone taper works great while you wait for the actual prevent to work (for example verapamil and/or lithium) as most prevents take a couple weeks atleast to kick in, and then adjusting the doses as needed until finding the right one. Great job on getting the O2, I hope it works for you. Keep us posted on your progress and goodluck!