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        Cluster Headache Help and Support >> Cluster Headache Specific >> change docs or therapies?
        
(Message started by: black on Oct 24^th, 2007, 6:34pm)

Title: change docs or therapies?
Post by black on Oct 24^th, 2007, 6:34pm

this question bothers me a lot.specifically should we insist in a promising doctor changing therapies till we find the one(with all the doubts if he knows what he is doing during the course) or visit many neuros till we find the one who has already treated ch and knows already the path(if there is such a path+if he knows it).any thougts?

Title: Re: change docs or therapies?
Post by Ray on Oct 24^th, 2007, 8:38pm

Dear Black:

For me, it would depend upon my relationship with the doctor. If the doctor is willing to work with you, listen to you, and to try new things, I would consider staying with the doctor.

If you don't feel that way, I would find one that is more willing to listen and work with you!

Best of luck,

Ray

Title: Re: change docs or therapies?
Post by BarbaraD on Oct 25^th, 2007, 7:40am

I'm with Ray -- if you find one that's "willing" to work with you then "educate" him/her. If he/she "knows everything" get another one until you find the "right" one. Same with neuros.

BUT, educate YOURSELF first. Go to your doc with TOOLS to help yourself. He/she probably doesn't/won't have the time to look up all the stuff to help you, so you do it for him/her. If you know what you're talking about, the doc is a lot more inclined to LISTEN to you.

Good luck,

Hugs BD

Title: Re: change docs or therapies?
Post by Gator on Oct 25^th, 2007, 7:54am

All I can do is parrot what has been said here. If your doc is an idiot without a clue and refuses to work with you on new treatments, dump him.

If you find a doc that will listen and read the materials you bring in and is willing to try new things, even if he never heard of them before, you got a keeper there.

Generally, neurologists are more specialized and would likely know more about CH than the average general practitioner. That being said, I'd rather have a general practitioner who will work with me than a "Headache Specialist" neuro with his head up his ass any day.

Education, YOUR education, is the key to good treatment.

Title: Re: change docs or therapies?
Post by phil_h on Oct 25^th, 2007, 8:20am

Grow your own if you can't find a competent one. If the DOC is willing and teachable , he may join you on your mission. If rigid and done learning and trying new things...move on. Good luck and stay strong. phil h

Title: Re: change docs or therapies?
Post by black on Oct 25^th, 2007, 3:32pm

what education guys?the only thing i know all these years is that i have clusters all year that getting worse winter and automn little better summer and spring.medrol is miracle but dangerous i cant take it for a lifetime and during the attack i use imigran if i have any kind of painkiller,counterpain on face with caution and fan heater directly on face.exams clear and a list of meds ive taken.this is what i am saying.after this usually they ask about stress as a cause.i refuse it but i am willing to do somehing about it if i have and dont understand it.they refuse it cause the pain is too strong and i seem probably fine.silence they think i guess.i ask about new exams(ex. for aimohromatosis,endokrinologikes and other theories). they say i am fine its not that.they write down a therapy with confidence i go home and visit them 15 days later.what education?all meds are new never taken the same that didnt work.i dont get it.whats ur way?have u seen any good?

Title: Re: change docs or therapies?
Post by Annette on Oct 25^th, 2007, 6:59pm

This type of education:

There are heaps of very good information on the Board, just spend some time reading up on all of the threads. Brew some nice strong coffee and make yourself comfortable in the chair and read on.

Regarding medication to control CH, a few things are a must to try, as they work so well for many.

1- Oxygen : cheap and fairly safe, and can abort an attack in mins. Make sure you have a regulator that can go up to 15L/min and a NON-rebreather mask. The best is the clustermasx which can be bought online at www.clustermasx.com. Its designed and manufactured by one of our own Cher, Ben. He is very helpful too.
2- Triptans: such as Imitrex, Zomig, Maxalt etc, also can abort the whole thing in mins. The best is the injection, nasal spray is a bit slower and tablet is pretty useless as it can take up to 1 hr to work.
3- Prednisone taper: for bad or stubborn cycles, can take up to 75 mg per day, tapering off over 5 to 7 days to break the patterns. You need to talk to your doctor about this.
4- Verapamil : doses may vary from 480 mg per day up to 1000 mg, needs to be monitored but can work very well in blocking most of the attacks.
5- For night attacks, try Melatonin from 3mg to 15 mg per night.
6- For day shadows and little ones, try Red Bull , oxygen, strong coffee etc.
7- During an attack, feel around the neck to see if you have a cluster lump, a hot tender swollen ganglion under the skin which is tender to touch, can be on back or side of neck, if you have one, apply ice there, it will help a lot with the pain. It may be inside your mouth, back of tongue on the roof of the mouth too, if its there sucking on ice helps.
8- Come here and share with us your life in cycle, whinge, moan, celebrate .... whatever, we will be happy to listen and give you any emotional/mental support that you may need.
9- If you like to try new things, look at Kudzu, Taurine, Shrooms etc also.
10- Other goodies to be discovered at a later date, such as Zyprexa, Neurontin, Epilim, Amytriptiline, Depakote, Topamax etc …..

Take care and wishing you many PFDAN ahead.

Annette

Title: Re: change docs or therapies?
Post by black on Oct 25^th, 2007, 7:13pm

thanks for ur concern annette but i already know most of these.what do u do with ur ch??how all of these helps u???i am saying my case and ur answering with archives.what do u take as therapy preventive that works for u as we speak?

Title: Re: change docs or therapies?
Post by Sean_C on Oct 25^th, 2007, 7:37pm

Dam, I keep missin that taxi at the fuckin bus stop.

I guess I'll thumb, it'll be faster than walkin.

Sean...................................

Title: Re: change docs or therapies?
Post by Annette on Oct 25^th, 2007, 7:44pm

I dont have CH Black, my husband Daniel does. I am a GP. I diagnosed his CH and I helped managed his meds/treatments with the guidance of the specialists ( neurologists, pain specialists, psychiatrists and psychologists, as well as physiotherapists ).

Daniel tried many different meds. In the end what worked for him is

Preventives:
1- Verapamil 240 mg 3 times a day.
2- Neurontin 600 mg 3 times a day.

Abortives:
1- Oxygen at 15L/min with non rebreather mask.
2- Imigran ( Imitrex ) injection or nasal spray.
3- Zyprexa 15 mg.

Supplements:
1- Melatonin 9 mg at night
2- Calcium, Magnesium, Taurine and Multivitamin 1 a day.
3- Omega 3 fish oil.

Prednisone taper
He used it twice during the last cycle, it was a very long 8 months cycle to help dampening the really bad hits. He needed to start from as high as 80 mg then tapering down slowly.

Plus relaxation techniques, controlled breathing techniques, ice, coffee, energy drinks and most importantly a change in attitude, he started to learn to live life as fully as possible between hits.

However Black, from what I have learnt, different people respond to different meds. So far there isnt one med that works without fail for all CHers. The meds have to be catered specifically for each individual person. What works for one may not work at all for another.

You need to educate yourself on everything about CH and meds that can be used for CH. Then you will need to try them under the supervision of a competent doctor, until you find the combo that works best for you.

I hope that helps.

Wishing you painfree days and nights.

Title: Re: change docs or therapies?
Post by chewy on Oct 26^th, 2007, 7:03am

Quote:

what education guys?

Start reading.