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BB
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What would you want your doctor/specialist to know
« on: Feb 17th, 2007, 6:55pm » |
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There have been a lot of complaints about the fact that many doctors dont seem to know/care much about CH, even the specialists.
I am starting a small campaign spreading the words on CH, starting with talking to my colleagues, to later writing letters on the subjects to various medical magazines.
I would really appreciate it if I can get a better idea of what CHers as patients wish that their doctors would know or do for them.
A few things jump to mind immediately such as the willingness to listen, the willingness to read and study things that the patients bring in for them and the willingness to prescribe oxygen ...
Please add your own experience and thoughts. I am grateful for any and all inputs.
Thank you all very much.
Painfree wishes to everyone.
Annette
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Ob1kanobee
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Re: What would you want your doctor/specialist to
« Reply #1 on: Feb 17th, 2007, 7:16pm » |
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Sounds good and I wish you luck! A lot of things come to mind but I'm going to stick with a few simple unorthodox remedies and give others a chance to chime in.
1) Oxygen (which you already mentioned but can't be said enough). 2) Red Bull or various energy drinks 3) Kudzu 4) Vigorous exercise before a hit
I'm not against prescription medications, but all too often Doctors want to give them to you without discussing or knowing viable options. Everything I have stated above has made my last CH episode a pleasant one as compared with years past. (wait until my next cycle though and I'll be crying like a baby again).
This brings me to my last recommendation which is this site. I think they should know about it and perhaps disclose it to their patients, not so much as a learning site per say, but as an online community of people whom they can relate with and also find support. It also wouldn't hurt for them to check it out for themselves, they might learn something new.
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| « Last Edit: Feb 17th, 2007, 9:12pm by Ob1kanobee » |
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Grandma_Sweet_Boy
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Re: What would you want your doctor/specialist to
« Reply #2 on: Feb 17th, 2007, 7:26pm » |
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I'm one of those lucky ones who has a family doc who is very willing to work with me - a neuro who has some experience and is also very open minded.
It was my family doctor that told me about this site.
We live in a really small town and even the head of Emergency Medicine at our hospital is quite up on current treatments. He was the one that introduced me to 02 and for that I bless him.
I'm also at the end of a two year remission and keeping my fingers crossed that I'm finally too old for this crap!
Carol
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Kevin_M
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Re: What would you want your doctor/specialist to
« Reply #3 on: Feb 17th, 2007, 8:40pm » |
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Ideally Annette? Flexibility
If a doctor does not take the initiative to refer to a headache specialist, if I request it, simply write it.
If prescribing prednisone, include detailed instructions on how to take it and what it's short term purpose is.
Until preventatives are effective, prescribe adequate abortives, oxygen firsthand and a back-up abortive such as Imitrex with an understanding it would be required daily even with oxygen. If not willing to prescribe oxygen, a specialist referral to one who will.
With preventives, prescribe a dosage with constant feedback on its effectiveness. Also have the next step planned and discussed if effectiveness is not being adequately attained.
A commitment by doctor and patient to keep appointment times as needed for progress during cycles and ability to schedule promptly if needed.
Willingness to go to bat for possible medical necessity correspondence with insurance if needed if preventives unresponsive.
And I said ideally, but this optional.
Showing Dr. Sewell's pre-study results and a willingness to at least discuss off-the-record any personal use of seeds and their effectiveness, perhaps looking at personal records of use and results, even if only for awareness.
Just a few ideas that come with unbelievable pain.
Thanks Annette.  
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Linda_Howell
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Re: What would you want your doctor/specialist to
« Reply #4 on: Feb 17th, 2007, 8:49pm » |
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Besides all of the above....
That we're NOT drug-seekers.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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BB
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Re: What would you want your doctor/specialist to
« Reply #5 on: Feb 17th, 2007, 9:39pm » |
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Thank you everyone
Please keep the suggestions comming, this is really helpful.
Annette
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daniel96
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Re: What would you want your doctor/specialist to
« Reply #6 on: Feb 17th, 2007, 11:44pm » |
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My previous specialist can tell me "Wait till you try to kill yourself by banging your head against the wall, then its serious!" , I was like what the hell. Are you trying to joke with me when u're not the one who is experiencing the pain and sufferings. Every time I go for his appointment I find it very redundant like go there pay $$ for fun and laughter. I just changed hospital hopefully this time round I will get a better specialist and this time I gona get oxygen treatment referral. OMG and I am here waiting for the appointment 1 mth... luckily temporarily I found red bull to ease some of my pain but of cause too much red bull is not that good also.
I used to admitted to hospital and end up the major specialist can tell me and say Oh its nothing ! Just go home!. Such specialists they don't really care about CHers like us. NATO - NO ACTION TALK ONLY.
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http://www.security6.com/clusterheadaches/ - my oxygen therapy setup
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BB
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Re: What would you want your doctor/specialist to
« Reply #8 on: Feb 18th, 2007, 12:47am » |
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Thanks Gator,
The links are very helpful, I am printing them out now. I have a folder marked Cluster Headaches with all the info I have gathered for the last 7 months, its getting rather large now.
I plan to do a few things with them :
1- Print out flyers and distribute them around the local medical centers and hospitals. Most places have an information stand where leaflets and flyers on various conditions are kept. I can just put some there.
2- Hand out and post as many to GPs and neurologists as possible. I can access the list of names and their addresses from the Medical Board.
3- Talk to my colleagues whenever possible about CH.
4- Once I have enough information I will make a power point presentation on CH and sign up as a speaker at Conferences to give talk on the subject.
5- Write articles on CH and send them to various Medical Magazines.
6- Write letters to the Health Minister and local MPs on CH, especially on subsidising for medication and treatments, outlying the cost of the condition to the individuals and their families as well as to society as a whole, arguing the fact that the total cost on the health system such as hospital admission and ER visits would be reduced if medications such as sumatriptans and oxygen is to be subsidised more.
I will certainly report my progress here for all to see.
I will also post copies of any of my letters/publications here.
In the mean time, please help me by giving me your experience/thought/information.
Much appreciated.
Love you all heaps and painfree wishes to everyone.
Annette
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BarbaraD
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Re: What would you want your doctor/specialist to
« Reply #9 on: Feb 18th, 2007, 7:50am » |
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Since the beginning of my CH, I've had the same GP - now he's retired and I've got to break in a new one. Haven't visited him yet (an old doc I had back in my 20s) so I'll probably have some suggestions after that.
My neuro is still younger than me and wonderful. He says, "If you listen to your paitients, they'll tell you what's wrong with them -- and if you listen a little longer they'll tell you what to do about it," That's the best thing I've heard.
Thanks for trying to get some info out.
Hugs BD
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froggy
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Re: What would you want your doctor/specialist to
« Reply #10 on: Feb 18th, 2007, 7:38pm » |
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You go Gator, way to be organized.
So, I just ran into the room where Tony was and I asked him what he would want his neuro to know about the CHs and Heeeeeeee said, "they hurt". How profound if you think about it.
Best wishes BB
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froggy
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George_J
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Re: What would you want your doctor/specialist to
« Reply #11 on: Feb 19th, 2007, 2:08am » |
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That this is an unbelievably painful, potentially devastating physiological condition, triggered by events that are not completely understood, but are very real, nevertheless. It is not imaginary, it is not psychologically driven, and it is not the result of hysteria or hypochondria. We are not exaggerating. It is unimaginably bad.
For emergency care physicians--please learn to recognize us when you see us. Take the time to learn to recognize our symptoms. One day you may be confronted with one of us in the emergency room. Don't put us aside to wait it out. Don't label us as drug-seekers. Don't dismiss us. Don't fob us off with narcotics. The things that may help us are so simple--an imitrex injection, high-flow oxygen with a non-rebreather mask--see us for what we are, and give us what we need. Even if the person you're seeing doesn't know what he has, it is your responsibility to recognize it and give appropriate treatment. By learning to see the clusterhead in front of you, you may start someone on the road to recovering his or her life from years of fighting this monster unarmed. Isn't that result worth an hour of your time to learn to see us?
Best.
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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duckie
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Re: What would you want your doctor/specialist to
« Reply #12 on: Feb 19th, 2007, 4:06am » |
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I don't have much to add to what everyone has said but just wanted to say that it's a great thing you are doing. Lii
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Melissa
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Re: What would you want your doctor/specialist to
« Reply #13 on: Feb 19th, 2007, 12:42pm » |
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In addition to echoing Linda's statement, I'd like to add that I personally would give anything NOT to have to take medications (or even alternatives) for these damned things!
For me, it's the last thing I want to do. 
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| « Last Edit: Feb 19th, 2007, 4:02pm by Melissa » |
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seasonalboomer
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Re: What would you want your doctor/specialist to
« Reply #14 on: Feb 19th, 2007, 1:29pm » |
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I would consider a physician excellent if he or she adequately developed an understanding that a Cluster Headache diagnosis is potentially a lifelong relationship. That part of this lifelong relationship is that there are no easy answers. Not for the sufferer, not for the supporter, and not for the physician. That managing cluster headache is hard work for all of the three just mentioned. But, if those three participants spend time, keep an open mind, and commit effort, CH can be "managed" and life can still happen.
This all implies responsibility. There's no easy answers and for things that a physician might think are troublesome for some patients, a cluster head will diligently wade through to find the answer or get a hold of if it is known to work. I know the main reason O2 at high flow rates isn't prescribed is because physicians don't understand the potential upside and it's a pain in the neck. They have to fax prescriptions, sometimes talk to home O2 companies, blah, blah, blah. Stuff they don't like to do when it's so much easier to pull the little pad out of the pocket and start prescribing.
Anyways, that's a few thoughts.
Scott
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BB
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Re: What would you want your doctor/specialist to
« Reply #15 on: Feb 19th, 2007, 3:51pm » |
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WOW !
The viewpoints and expressions that have come out , its amazingly powerful ! Thank you all.
Initially I thought I would summarise peoples points into a note type of letter to be sent to all the doctors and neurologists. However, I realise now that doing so I wont be able to reflect the so strong sentiment that I have felt here.
I am thinking of writing a short introductory letter then print the entire thread in its entity then send. That way
I will be able to convey the powerful feelings that are here as well as raise more awareness for CH.com.
What do you think people ? Please let me know whether you agree or disagree with that thought ?
Thank you all again and painfree wishes.
Annette
PS: Edited for spelling mistakes ! Duh, excited brain dont communicate well to digits !
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| « Last Edit: Feb 19th, 2007, 5:04pm by BB » |
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cluster
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Re: What would you want your doctor/specialist to
« Reply #16 on: Feb 19th, 2007, 4:47pm » |
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Great stuff Annette!
One more issue (at least in my country) is that people somtimes have to wait a couple of MONTHS to see a neurologist. Some neurologist accept CH sufferers for an immediate appointment. And this is IMHO as it should be.
Gator's link collection is also great stuff, but I think there is a newer "update" (2005) from TD Rozen here: http://www.touchbriefings.com/pdf/1239/ACF293.pdf
There is a listing of "recommended" CH doctors on the O.U.C.H website: http://www.ouch-us.org/chgeneral/doctors.htm.
We have a similar list on the german site "ck-wissen.de". I think it is usefull for new CH patients, if they meet a neuro with experience with CH patients - and not a "CH newbie" doctor.
All the best an keep going!
Friedrich
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Charlie
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Re: What would you want your doctor/specialist to
« Reply #17 on: Feb 19th, 2007, 6:45pm » |
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A lot of people have to wait to see a new neurologist here too. Fortunately or unfortunately, I've been going to them all my adult life for epilepsy and have an advantage. Most of mine know what it is and one did some good way back in the 1970s with a beta blocker.
It's always good when you see a doctor that's old enough to have had some pain. Some of them are half my age (60) ......
Charlie
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froggy
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Re: What would you want your doctor/specialist to
« Reply #18 on: Feb 19th, 2007, 11:21pm » |
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georgej, well said.
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froggy
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LeLimey
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Re: What would you want your doctor/specialist to
« Reply #19 on: Feb 20th, 2007, 3:57am » |
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That women and CHILDREN do get CH. There are enough horror stories here already from regular posters about how young they started getting hit - lets not inflict that on another generation
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clusterwife
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Re: What would you want your doctor/specialist to
« Reply #20 on: Feb 20th, 2007, 11:32am » |
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Like how the police have to get shocked by a tazer gun, all doctors should have to feel the PAIN of which they are treating. Maybe then, they will know what they are actually dealing with. Maybe to finish medical school, they have to endure an hour of clusterheadache pain. Sounds fair. Any one else agree??? Leah.
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Chillrmn1
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Re: What would you want your doctor/specialist to
« Reply #21 on: Feb 20th, 2007, 6:19pm » |
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on Feb 17th, 2007, 8:40pm, Kevin_M wrote:
Showing Dr. Sewell's pre-study results and a willingness to at least discuss off-the-record any personal use of seeds and their effectiveness, perhaps looking at personal records of use and results, even if only for awareness.* |
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To support and promote clinical studies of the alternatives, and when scientifically proven effective, to promote and support research and development of the alternatives for a legally prescribed medication that is available for all whom traditional medications are ineffective for or can't take due to side effects.
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BB
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Re: What would you want your doctor/specialist to
« Reply #22 on: Feb 20th, 2007, 6:34pm » |
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on Feb 20th, 2007, 6:19pm, Chillrmn1 wrote:
To support and promote clinical studies of the alternatives, and when scientifically proven effective, to promote and support research and development of the alternatives for a legally prescribed medication that is available for all whom traditional medications are ineffective for or can't take due to side effects.
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Until alternative treatments have been legalised, I think all you can ask from most doctors is to be aware of them and not be judgemental. Its a very personal, not to mention legal and moral issue.
A doctor can not publically support or promote the use of subtances that are still deemed illegal by our laws. He or she can support and promote the various studies on the subject though.
Just need to be clear on this.
Annette
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BB
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Re: What would you want your doctor/specialist to
« Reply #23 on: Feb 20th, 2007, 6:38pm » |
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on Feb 20th, 2007, 11:32am, clusterwife wrote:| Like how the police have to get shocked by a tazer gun, all doctors should have to feel the PAIN of which they are treating. Maybe then, they will know what they are actually dealing with. Maybe to finish medical school, they have to endure an hour of clusterheadache pain. Sounds fair. Any one else agree??? Leah. |
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Please, only constructive comments if you can.
Now seriously, how on earth are you proposing this can be done ?
Annette
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Chillrmn1
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Re: What would you want your doctor/specialist to
« Reply #24 on: Feb 20th, 2007, 7:34pm » |
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on Feb 20th, 2007, 6:34pm, BB wrote:
He or she can support and promote the various studies on the subject though.
Just need to be clear on this.
Annette |
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That's all I'm asking for. Let's have these studied and hopefully determine as to why these substances and what exactly it is in these substances that result in positive responses (anecdotally) for so many that have tried them.
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