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krkrbts
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Dud doctors?
« on: Oct 20th, 2006, 1:12am »
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Help!
 
What medication should I ask to take?
 
I'm getting real desperate.  I saw my doctor two days ago and he agreed with me that I may have cluster headaches. He prescribed me Maxalt-the dissovalble kind.
 
Well once again, these pills don't seem to do anything for the pain.  I specifically asked for Imitrex and he basically just told me to take the Maxalt instead.
 
The week before I went to urgent care and the woman prescribed me Fioricet and Tylenol with codeine-This medication is for tension headaches, which I do not have.  I believe she screwed up.
 
Is it me or do these doctors not have a clue?  
I see my doctor again next week?  Do I give him the ultimatum-give me the Imitrex or I find somebody else? I' have had it.
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Barry_T_Coles
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Re: Dud doctors?
« Reply #1 on: Oct 20th, 2006, 2:21am »
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Hi krkrbts
Barry from down under, welcome but really hope you don’t have Clusters.  
 
I would suggest you demand that you get a referral to a Neurologist for confirmation one way or the other as there are other things that can mimic CH.  
 
When you get the referral go armed with as much info as you can glean from this site and anything we can point you to as the Nuro may not have heard of CH anyway and He/She may need the info to be able to help you in prescribing meds or oxygen.
If you’re not keen on meds then oxygen is the way to go, have a look at the link to the left on oxygen info.
 
There is a heap of info to the left; read, read and read again to acquaint yourself with the condition.  
Do the cluster quiz, as a start it will give you some idea what you are dealing with.
 
Hears a link to the Mayo clinic for a starter.  
 
http://www.mayoclinic.com/health/cluster-headache/DS00487  
I can't help you with the meds side of things, oxygen is my best weapon for the big hits & Red Bull for the smaller ones; it may sound a little crazy but a lot of people have found RB a great abortive for the lower level hits, it has to be ice cold & chugged down as quick as you can.  
Keep us informed as to how you are going.  
Kind Regards  
Barry
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Re: Dud doctors?
« Reply #2 on: Oct 20th, 2006, 2:24am »
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on Oct 20th, 2006, 1:12am, krkrbts wrote:
Help!
 
What medication should I ask to take?
 
I'm getting real desperate.  I saw my doctor two days ago and he agreed with me that I may have cluster headaches. He prescribed me Maxalt-the dissovalble kind.
 
Well once again, these pills don't seem to do anything for the pain.  I specifically asked for Imitrex and he basically just told me to take the Maxalt instead.
 
The week before I went to urgent care and the woman prescribed me Fioricet and Tylenol with codeine-This medication is for tension headaches, which I do not have.  I believe she screwed up.
 
Is it me or do these doctors not have a clue?  
I see my doctor again next week?  Do I give him the ultimatum-give me the Imitrex or I find somebody else? I' have had it.

 
Unfortunately, many doctors are clueless about what CH is, let alone how to treat it.  
 
The first thing you should do is get a definitive diagnosis.  You MAY have cluster headaches, but unless you have seen a doctor familiar with CH that can rule out other disorders that can mimic clusters, you MAY have something else as well.  Cluster headaches will not kill you - taking cluster headache medications when you have some other disorder might.  Get a firm diagnosis, not a questionable one like "You may have cluster headaches."    
 
That being done, if you have cluster headaches and are going to demand something, I'd start with oxygen.  Up to 15 lpm via non-rebreathing mask for not more than 15 minutes as needed.  Imitrex injections and Zomig Nasal Spray work well and quickly for a lot of people.  Generally, pills do not work fast enough to be effective abortives for CH.
 
I don't know if you've seen this yet - print this document and take a copy to your doctor.  It describes abortive, preventative, transitional and surgical treatments.
 
http://www.brightok.net/~mnjday/chtherapy.pdf  
 
 
Good luck and PFDAN
 
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chewy
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Re: Dud doctors?
« Reply #3 on: Oct 20th, 2006, 6:41am »
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Dont waste your time with him.
 
Arizona
 
Jeffrey D Steier
Scottsdale
 
George Wang
Tempe
 
Constatine Moschonas
Scottsdale
 
 
James L Frey
Phoenix
 
 
Jeffrey D. Steier, M.D.
Scottsdale
 
Joseph Cohen
Phoenix
 
 
Stephen Chamakian
Phoenix
 
 
Alan Hamilton
Phoenix
 
Scott J. Sherman
Tucson
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alchemy
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Re: Dud doctors?
« Reply #4 on: Oct 20th, 2006, 7:29am »
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Krkrbts, welcome to the site. there are a lot of clueless docs out here in Phx. i know of one really good one thats David Doddick at the Mayo clinic. i don't know any from the list Chewy made but if he put them on here i'm sure they're good. don't waste your time with a clueless doc. take care  
 
jim in n.phoenix
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chewy
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Re: Dud doctors?
« Reply #5 on: Oct 20th, 2006, 7:32am »
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Those are Docs listed on the OUCH site
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alchemy
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Re: Dud doctors?
« Reply #6 on: Oct 20th, 2006, 7:47am »
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on Oct 20th, 2006, 7:32am, chewy wrote:
Those are Docs listed on the OUCH site

 
then like i said if you put them up they must be good Grin
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Bob_Johnson
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Re: Dud doctors?
« Reply #7 on: Oct 20th, 2006, 12:45pm »
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1. Search the OUCH site (button on left) for a list of recommended M.D.s.
 
2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
 
3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
 
4. http://www.achenet.org/physicians/   On-line screen to find a physician.
 
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder"Wink which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.  
 
 
 
 
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krkrbts
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Re: Dud doctors?
« Reply #8 on: Oct 20th, 2006, 5:24pm »
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Thanks all for the advice.
 
I am going to see what happens this week.  My doctor also thought it might be a sinus infection and prescribed me Avelox and told me to take a decongestant and Zyrtec. I've had mixed results so far but will see him next Wednesday.  
 
If the medications I'm taking don't work, I will ask for Imitrex pills or Zomig nasal spray.
 
What's bizarre about all this is around the same time I started getting headaches, I began to have itchy skin and red dots appeared on my arms and face.  The dermatologist I went to said I was developing rosacea and apparently there is a connection with that and migraines.  I will trudge on.
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Re: Dud doctors?
« Reply #9 on: Oct 24th, 2006, 9:22pm »
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 Today I had an appointment with my neurologist, he is said to be one of the best in the business.
   Today is the last time I will see a neurologist. they are cluless as to what to do. have they cured anybody?
  Why am I paying 30% more to see a neurologist when they can do no more than my guy down at Doc in the Box.
  I have had Cluster Headaches for 30 years and today looking back I can say, not one neurologist I have been to has done any more than sit and stare at me then pull out the priscription pad and prescribe the same old shit.
  Excuse me if I sound like an a--h---, I have been shadowing all day long. Huh
    
« Last Edit: Oct 24th, 2006, 9:25pm by rhino » IP Logged
Linda_Howell
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Re: Dud doctors?
« Reply #10 on: Oct 24th, 2006, 9:39pm »
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Quote:
have they cured anybody?  

 
 
  Rhino, while I certainly understand your bitterness at clueless Drs.
 
   THERE IS NO CURE
 
Just to find a Dr. who is as knowledgable as US......is good enough for me.
 
  Krk....ask your Dr. for a script for 02...  Non-rebreather mask..12 to 15 lpm
 
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Re: Dud doctors?
« Reply #11 on: Oct 24th, 2006, 9:42pm »
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on Oct 24th, 2006, 9:22pm, rhino wrote:
 Today I had an appointment with my neurologist, he is said to be one of the best in the business.
   Today is the last time I will see a neurologist. they are cluless as to what to do. have they cured anybody?
  Why am I paying 30% more to see a neurologist when they can do no more than my guy down at Doc in the Box.
  I have had Cluster Headaches for 30 years and today looking back I can say, not one neurologist I have been to has done any more than sit and stare at me then pull out the priscription pad and prescribe the same old shit.
  Excuse me if I sound like an a--h---, I have been shadowing all day long. Huh
    

 
The key is finding a neuro who will take your advice and prescribe the things you need.  You are your own best weapon, as long as you go in well armed and deal with a neuro that will listen.  They are out there.  Do everything you can to findone.  All of the info you need is here on this site.  Share it with you neuro.  If he is not receptive, move on.
 
 
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Re: Dud doctors?
« Reply #12 on: Oct 24th, 2006, 9:43pm »
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i agree rhino
 
everytime i started a cycle i used to go to a neuro, they would look at my file, usually as i was sitting down and look at me, prod me, (not in an unwelcoming way as many of you are thinking) and then say, its just Ch, nthing can be done, just keep using o2 and the imigran
 
tata, that will be a couple of hundred bucks.  
 
reminds me of 'something about mary' when the therapist comes back in with his lunch and napkin,  
 
 
lol
 
Turts
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Re: Dud doctors?
« Reply #13 on: Oct 25th, 2006, 4:27am »
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Turts,
 
Go see Prof Spira at Prince of Wales Hospital, he is the best and he wont fob you off.
 
PM me when you want and I will give you a referral.
 
Annette
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Re: Dud doctors?
« Reply #14 on: Oct 25th, 2006, 8:26am »
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Wonder what your doctor would say about alternative therapies like clusterbusters???
 
They'd have to be mad to think some fungus could work better than state of the art pharmacology wouldn't they?
 
For now O2 would be a good short term fix
 
all the best
 
« Last Edit: Oct 25th, 2006, 8:28am by Beastfodder » IP Logged

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Re: Dud doctors?
« Reply #15 on: Oct 25th, 2006, 3:22pm »
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on Oct 24th, 2006, 9:39pm, Linda_Howell wrote:

 
 
  
   THERE IS NO CURE
 
 

 
Wrong Oh Sweet One....
 
There have been several. Toads, Skull adjustments, snorting hot sauce (my personal fav) not to mention all the fine sponser buttons we have had. Grin
 
miss ya........Tim
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Re: Dud doctors?
« Reply #16 on: Oct 25th, 2006, 3:34pm »
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get the imitrex in nasal spray and zomig in nasal spray.  They should abort the ha in 6-15 min.  If you take the pills it can take up to an hr for the pain to go away.  These meds stop the ha once they have started.  You need to also try oxygen as mentioned in an earlier post.  It will abort in 15-20 min. and is natural.  You also need to think about trying a preventative.  Lithium 900mg or verapamil up to 960mg are good meds to try.  Predisone tapper is good to give you a break and stop the cycle temporarily but not perminetly.  Good luck.
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