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        Cluster Headache Help and Support >> Cluster Headache Specific >> What would you want your doctor/specialist to know
        
(Message started by: BB on Feb 17^th, 2007, 6:55pm)

Title: What would you want your doctor/specialist to know
Post by BB on Feb 17^th, 2007, 6:55pm

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

Title: Re: What would you want your doctor/specialist to
Post by Ob1kanobee on Feb 17^th, 2007, 7:16pm

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.

Title: Re: What would you want your doctor/specialist to
Post by Grandma_Sweet_Boy on Feb 17^th, 2007, 7:26pm

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

Title: Re: What would you want your doctor/specialist to
Post by Kevin_M on Feb 17^th, 2007, 8:40pm

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. :) :-*

Title: Re: What would you want your doctor/specialist to
Post by Linda_Howell on Feb 17^th, 2007, 8:49pm

Besides all of the above....

That we're NOT drug-seekers.

Title: Re: What would you want your doctor/specialist to
Post by BB on Feb 17^th, 2007, 9:39pm

Thank you everyone :-*

Please keep the suggestions comming, this is really helpful.

Annette

Title: Re: What would you want your doctor/specialist to
Post by daniel96 on Feb 17^th, 2007, 11:44pm

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.

Title: Re: What would you want your doctor/specialist to
Post by Gator on Feb 18^th, 2007, 12:18am

Well, they could start by knowing what CH is and what it is not:

http://www.ihs-classification.org/en/02_klassifikation/02_teil1/03.01.00_cluster.html

Treatment options would be good:

http://www.brightok.net/~mnjday/chtherapy.pdf

That oxygen can be prescribed at flow rates higher than 10 lpm:

http://www.chhelp.org/mhni.html

That medication is damned expensive and they need to help their patients actually get it using Letters of Medical Necessity, samples or directing patients to organizations such as this:

https://www.pparx.org/Intro.php

That patient advocacy groups such as OUCH exist to provide information and to help sufferers and supporters cope in between office visits.

plus what you and everyone else has said.

Please keep us posted on how it goes. Thanks.

Title: Re: What would you want your doctor/specialist to
Post by BB on Feb 18^th, 2007, 12:47am

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

Title: Re: What would you want your doctor/specialist to
Post by BarbaraD on Feb 18^th, 2007, 7:50am

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

Title: Re: What would you want your doctor/specialist to
Post by froggy on Feb 18^th, 2007, 7:38pm

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

Title: Re: What would you want your doctor/specialist to
Post by georgej on Feb 19^th, 2007, 2:08am

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

Title: Re: What would you want your doctor/specialist to
Post by duckie on Feb 19^th, 2007, 4:06am

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

Title: Re: What would you want your doctor/specialist to
Post by Melissa on Feb 19^th, 2007, 12:42pm

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. :(

Title: Re: What would you want your doctor/specialist to
Post by seasonalboomer on Feb 19^th, 2007, 1:29pm

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

Title: Re: What would you want your doctor/specialist to
Post by BB on Feb 19^th, 2007, 3:51pm

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 !

Title: Re: What would you want your doctor/specialist to
Post by cluster on Feb 19^th, 2007, 4:47pm

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

Title: Re: What would you want your doctor/specialist to
Post by Charlie on Feb 19^th, 2007, 6:45pm

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

Title: Re: What would you want your doctor/specialist to
Post by froggy on Feb 19^th, 2007, 11:21pm

georgej, well said.

Title: Re: What would you want your doctor/specialist to
Post by LeLimey on Feb 20^th, 2007, 3:57am

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

Title: Re: What would you want your doctor/specialist to
Post by clusterwife on Feb 20^th, 2007, 11:32am

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.

Title: Re: What would you want your doctor/specialist to
Post by Chillrmn1 on Feb 20^th, 2007, 6:19pm

on 02/17/07 at 20:40:36, 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.*

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.

Title: Re: What would you want your doctor/specialist to
Post by BB on Feb 20^th, 2007, 6:34pm

on 02/20/07 at 18:19:53, Chillrmn1 wrote:

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

Title: Re: What would you want your doctor/specialist to
Post by BB on Feb 20^th, 2007, 6:38pm

on 02/20/07 at 11:32:50, clusterwife wrote:

Please, only constructive comments if you can.

Now seriously, how on earth are you proposing this can be done ?

Annette

Title: Re: What would you want your doctor/specialist to
Post by Chillrmn1 on Feb 20^th, 2007, 7:34pm

on 02/20/07 at 18:34:58, BB wrote:

He or she can support and promote the various studies on the subject though.
Just need to be clear on this.
Annette

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.

Title: Re: What would you want your doctor/specialist to
Post by BB on Feb 20^th, 2007, 11:51pm

That, I agree with you 100% Chillrmn. :)

Annette

Title: Re: What would you want your doctor/specialist to
Post by Linda_Howell on Feb 21^st, 2007, 12:10am

Quote:

--------------------------------------------------------------------------------
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.

This is one of the most lame statements I've heard here. Of course I don't agree. >:(

Title: Re: What would you want your doctor/specialist to
Post by Turts on Feb 21^st, 2007, 12:30am

I think that Drs not only have to learn about how to diagnose us as a CH, but also diagnose or be aware of all other Psychological, emotional baggage that comes along with it.

I was once told by a Neuro
'not to worry, Clusterheadaches are not dangerous to my health.'

maybe not directly in a physical sense, but how about indirectly.

I hate to say it, but if it werent for this site, my sanity and life may have been lost to this disorder.

a visit to our friendly GP isnt alway just simply a visit to get that Verap repeat filled. its a quiet whisper for help/attention in a physical sense that perhaps a DR might understand/appreciation what were are going thru.

Turts

Title: Re: What would you want your doctor/specialist to
Post by UN solved on Feb 21^st, 2007, 12:49am

The doctor must understand how intense these attacks can be. They must not dismiss this as another 'headache' or another pain.

The literature that says that CH is not life threatening should be changed / eliminated / re-worded somehow.

UNsolved

Title: Re: What would you want your doctor/specialist to
Post by kcopelin on Feb 21^st, 2007, 12:08pm

Good grief, I DON'T WANT my doc to get hit with a Kip 10 when she's trying to help me! Not any more than I would wish cancer on an oncologist or rheumatoid arthritis on my mother-in-laws doctor. Pain tends to make some more compassionate-but if they were butt-heads to start with-not much chance of that changing just cause they experience one cluster headache.
The constructive suggestions here are very good-I would echo the need the to be flexible and listen to the patients. So far I have taken copies of my research to three neurologists. None of them even looked at my info-although there was enough there for a good start on a thesis. My primary doc, on the other hand, will look at what I bring her, will try new things-when the VA system allows it, and takes the time to listen to me. She is a God send.
PFDAN y'all
kathy

Title: Re: What would you want your doctor/specialist to
Post by marlinsfan on Feb 21^st, 2007, 5:34pm

1. Melatonin, and

2. Inform their medical assistants and front desk staff how painful CH is so when we call in at the start of a cycle, we don't get an appointment 3 weeks out.

Title: Re: What would you want your doctor/specialist to
Post by BB on Feb 21^st, 2007, 6:38pm

Thank you very much everyone :-*

The amount of great suggestions comming is amazing.

I am going to do a bit of compilation in a little while. Please keep adding your thoughts.

Thanks and painfree wishes to all.

Annette

Title: Re: What would you want your doctor/specialist to
Post by thebbz on Feb 22^nd, 2007, 2:47pm

Other pain scales and comparisons are not relevant. CH pain does not compare with any other pain.
Its more about human relations than anything. They do not know,yet they are judging pain levels that are not being taught or put in the proper perspective. This is not acceptable.
all the best.
jb

Title: Re: What would you want your doctor/specialist to
Post by BB on Feb 22^nd, 2007, 2:54pm

The pain scale is a very good point, thanks BBZ. I dont think most of the doctors are aware of the KIP scale.

Yet it is so helpful to know and to use it.

Shall we work at making the KIP scale an acceptable scale for CH pain universally world wide ? both for CHers and doctors.

What do you think folks?

Appreciate your input everyone, and painfree wishes to all :-*

Annette

Title: Re: What would you want your doctor/specialist to
Post by BB on Feb 24^th, 2007, 6:09pm

Alright folks, this is what I have compiled out of the ideas given above. Please let me know what you think and please feel free to add

HOW TO BE A GOOD GP FOR YOUR CH PATIENTS

1- Knowledge

- Be able to diagnose CH quickly and accurately. Know the diagnosis criteria. Know to ask questions on the right symptoms eg Have a copy of the cluster quiz and have the patient fill it out then know how to evaluate it.

- If in doubt, refer to a good neurologist who specialise in headaches and who preferably have experience in treating CH. Have a list of those specialists handy.

- Be aware that women and children do get CH.

- Be willing to listen and to read what the patient brings in for you. Preferably spend some time reading up on the condition and medication.

- Recognise that CH requires urgent appointments and frequent follow ups.

- Recognise that CH is not just a headache but a very complex condition which affect many aspects of the patients life, including the whole family, and most likely will require a team effort, involving pain clinic, hospital ER, specialists, psychiatrist etc.

- Recognise that CH is a life long condition even for episodics and that a good working relationship with the patient is vital to how well the condition will be controlled.

- Recognise that CH can be so severe ( indirectly life threatening) that crisis can occur and have a plan to effectively respond to such.

2- Medications

- Be aware of both preventive and abortive medications. Be aware that not each patient will response to the medication differently. Polypharmacy is often necessary.

- Be aware that oxygen is the first line abortive and should be recommended first. Have oxygen at 15L/min available in your surgery and prescribe them to the patient as soon as a diagnosis is made.

- Be aware of the most commonly used meds for CH : oxygen, sumatriptans ( in injections or spray NOT the pills ), verapamil, prednisone and how to use them properly.

- Be able to prescribe preventives alongside effective abortives and be able to explain/discuss these meds with the patient.

- Be flexible and allow the experienced patients to try new/different meds or regime as long as its safe to do so.

- Make sure that the patient understand how to use the meds and have frequent follow ups.

- Be prepare to fight insurance companies/pharmaceutical boards to procure higher supply of meds for the patient as needed.

- Recommend support groups such as CH.com site, OUCH and other local headache support groups. Have a list of them handy.

- Be aware of the need for pain control until the preventives kick in or the abortive working well. Be aware that this need is genuine. Dont fob off the patient as drug seeking without properly assessing the situation.

- Be aware that normal pain killers dont work for CH and use narcotics only with utmost precaution. Preferably the patient should be prescribed these by a specialist or pain clinic.

3- Pain issue with CH

- Be aware that the pain associated with CH is more severe and different to any other pain experienced by man. It is literally worse than having a limb ripped off without anaesthetics. Do not underestimate the pain endured by the patient. It is very real and its not exagerated.

- Be aware that the pain may not completely stop after an attack as described in text books. Be aware that there are lingering pain which also needs to be dealt with.

- Know what a shadow is.

- Be aware what is a KIP scale. It makes life easier when both doctor and patient are working on the same scale.

- Narcotics do not stop the CH pain.

4- Other issues with CH

- CH is not just a headache. It affects the patients whole body and life.

- Physically it affects sleep, appetite, strength, memory, concentration. Mentally it affects moods and personality.
Socially it renders the patient isolated. It also severely affects the ability to work, coupled with the cost of the medication it can ruin the patient financially.

- Depression, anxiety, panic attacks are very real issues with CH and need to be treated seriously and effectively.

- CH affects the whole family, from partners to children to friends and relatives to workmates. Be prepare to offer them support as needed.

5- Alternative treatments for CH

- Be aware that apart from conventional medications there are options available to the patient. Become knowledgable enough about them to recommend/discuss the use with the patient.

- These include: energy drinks such as Red bull, ginger tea, green tea, the use of ice, cold air, vigorous exercise, the circulation techniques, shrooms, seeds, vitamins supplements, melatonins, etc. Have a list of those handy to give to the patient and allow them to try as they see fit.

There you have it, let me know what you guys think please.

Thanks everyone.

Annette

Title: Re: What would you want your doctor/specialist to
Post by kayarr on Feb 24^th, 2007, 9:25pm

Please add that the Dr. needs to recognise the severe nature of the prescribed medications and how they effect the cluster sufferer. Heart issues, kidney issues and other health problems arise with the amounts and types of medications not to mention the effects of lack of sleep and stress.

Title: Re: What would you want your doctor/specialist to
Post by artonio7 on Feb 25^th, 2007, 10:33am

Excellent Annette! Thank you for compiling this list, I think it will be very helpful. Can you include at the beginning of the list you're involvement and a brief biography? I think it would be relevant!

with warm regards,
Tony

Title: Re: What would you want your doctor/specialist to
Post by kayarr on Feb 25^th, 2007, 4:52pm

Your list almost makes me cry. The reality of having to justify pain and the frustration and desperation of a patient with chronic pain is sometimes too much. Thank you so much for all your work and all your spunk!

Kimberly and Jeffrey

Title: Re: What would you want your doctor/specialist to
Post by BB on Feb 25^th, 2007, 8:41pm

Thanks Kim, will add that in now.

Thanks Tony, I will do that when the final draft is done.

Is there anything else anyone wants to add?

Thanks a bunch and painfree wishes to you all.

Annette