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        Cluster Headache Help and Support >> Cluster Headache Specific >> very frustrated
        
(Message started by: wysper on Sep 11th, 2006, 10:55am)
Title: very frustrated
Post by wysper on Sep 11th, 2006, 10:55am
Well, I just told my doctor he is a fucking idiot. I'm so tired of people telling me i have migraines. I know I don't fit the "norm" for ch's but DAMNIT if they could only feel half the pain I have felt the past week then maybe they would take into consideration that it's possible that I do suffer from this condition. I've had 4 attcaks since 6:30 last night and am ready to go insane. I finally got a neuro appt but thats not till next tues. I'm no longer allowed on the premises of my doc office because I told him he's a fucking idiot. But he is, he even told me caffiene is a cause, then I told him that it actually helps some people. He asked if i tried it and I told him no because my heart flutters so intensley durring an attack that I'm afraid to take anything that might speed it up.  His conclusion to that was that I'm having panic attacks not clusters. I then went to tell him, no a ch brings on a panick attack. I 'm so fucking frustrated and can't stop crying. Why is it that the people you need most to understand don't?
Title: Re: very frustrated
Post by BigCoffinHunter on Sep 11th, 2006, 11:08am
It's been my experience that good doctors are few and far between.  Between my job and personal docs, the sheer ignorance and incompetance of so many docs is absolutely frightening.  Sorry you're going through this, hopefully your neuro will help get you on track.  I can definitely feel your frustration.
Title: Re: very frustrated
Post by seasonalboomer on Sep 11th, 2006, 11:08am
well, luckily there's more doctors out there. check the list on OUCH (link below), you might find one that is near you (there are several in FL)

http://www.ouch-us.org/chgeneral/doctors.htm

I've not much pity for doctors who are not only ill-informed, but rude or demeaning in the application of their lack of wisdom. You have an opportunity here to take your treatment into YOUR hands now and find a doctor that will listen and help you determine your course of treatment. Maybe having such a bad experience was the necessary closing of that door that will allow you to open the next door to successful CH management.

I wish you good luck.

Scott
Title: Re: very frustrated
Post by wysper on Sep 11th, 2006, 11:31am
Thank you very much for the link. I found one near by but of course they don't accept medicaid. I've had so many problems finding a doc that does accept my insurance and when I finally do they turn out to be idiots. If I could afford to, I would go to a good doc but unfortunatly I can't. Guess I'll just have to wait this out another week and hope that I don't have another idiot doc.
Title: Re: very frustrated
Post by kcopelin on Sep 11th, 2006, 11:57am
Wysper,
It's extreme I know, but you could do what you have to do to ensure you get hit right in front of your next doctor.  I've asked to be given nitro-ususally will trigger a good Kip10-but hey if alcohol is a trigger for you-slug some non-odiferous stuff right before being seen.  A very dear friend of mine has set me straight on this-have always tried to be at my best in front of family, docs,...everyone...when they really need to see it. They generally respond more sympathetically, and helpfully, when you are writhing in pain than they do when you call them f**ing idiots (even though they are).  
Praying you get a break, and a good doctor!
PFDAN
kathy
Title: Re: very frustrated
Post by starlight on Sep 11th, 2006, 11:58am
"Coffee causes them."  Wow that's another crazy statement to add to the list.
My personal favorite was when I was about 18 and a doctor handed me a card with a psychiatrist's name on it (to help me get rid of the HAs) cause evidently his diagnosis was that I was nuts.  Maybe a neurologist would have been more appropriate?
Don't lose hope--ask your next doc to give you a referral to a neurologist.  Or check and see if your health insurance lets you bypass the regular doctor and make your own appointment with a neuro.  The odds there are better that they will know something about clusters.
Good luck, Star
Title: Re: very frustrated
Post by wysper on Sep 11th, 2006, 12:08pm
nitro, What is that?
Title: Re: very frustrated
Post by BigCoffinHunter on Sep 11th, 2006, 12:10pm
Nitrogylcerine tabs, like what they use for heart attacks.  They apparently reliably trigger CH's in people in cycle.
Title: Re: very frustrated
Post by kissmyglass on Sep 11th, 2006, 12:13pm
Nitroglyceryn (sp)  usually will trigger an attack in oct clusterheads. Never tried it but I heard it's a real bitch. I would suggest a different approach... :)

Good Luck & hang tough.

Kev
Title: Re: very frustrated
Post by Sandy_C on Sep 11th, 2006, 1:15pm
Stephanie, I'm so sorry you are having so much trouble with your doc.  Unfortunately, cluster headaches are not well known in the medical profession, even among neuros.

Since you have a neuro appt next Tues (and we hope he/she has at least heard of CH), go to this link,  

http://www.brightok.net/%7Emnjday/chtherapy.pdf, print it out and take it with you.  As a matter of fact, I think we should all print this out and carry it with us right behind our driver's license!

Also, check to the buttons on the left of your screen.  Go to medical info, print that - go to cluster traits - print that.

KEEP A LOG - write down every hit, time of hit, duration of hit, what you ate/drank, what you did before, during, and after the hit.  Log your pain levels - Kip scale to your left.

Also, go to http://www.ouch-us.org/index.shtml and read and print great info there.  

Take everything to your doc.  Insist that he/she read it.  Insist that you want to be respected for your own knowledge of your body - it's yours, not theirs - and insist that what you are going through is not migranes - not panic attacks, but could  possibly be cluster headaches.  Make sure, that while you are doing all this insisting, that you remain polite, adult, and knowledgeable.  Somehow, I don't think it's quite prudent  to call your doc a fucking idiot  ;;D, however well deserved it may be.

Good luck.  Hope this neuro is a smart one.  In my personal opinion, the only good doctor is one who actually listens to his patients and not his education.

Sandy
Title: Re: very frustrated
Post by wysper on Sep 11th, 2006, 3:30pm
you know, I did just that... printed out all the info I could find and he refused to look at it, said I was self diagnosing
Title: Re: very frustrated
Post by wysper on Sep 11th, 2006, 4:02pm
I found a web site (for the life of me can't remember where) of a man experiencing a cluster attack. I wanted to book mark it so I could show it to my boss does anyone have the link or a similar one?
Title: Re: very frustrated
Post by E-Double on Sep 11th, 2006, 5:10pm
www.clusterbusters.com
Title: Re: very frustrated
Post by Sandy_C on Sep 11th, 2006, 5:22pm

on 09/11/06 at 15:30:27, wysper wrote:
you know, I did just that... printed out all the info I could find and he refused to look at it, said I was self diagnosing



Then find another doctor who will listen to you and take you seriously.  God, I hate doctors who ignore our intelligence, and our knowledge of our own bodies, and, given the information available to us on the internet that we just might know something that they don't.  Just because they have an MD degree does not make them knowledgeable in EVERYTHING!

Sandy
Title: Re: very frustrated
Post by kcopelin on Sep 11th, 2006, 5:59pm
Back to the nitro-it is extreme-and make sure they know you need O2 and imitrex shot on hand.  I know it sounds really hairy-but even the most messed up doctor will respond when they see a person having a full-blown KIP 10-if they don;t they simply are not human.
kathy

P.S.  Have been up since 1:45 a.m.  scuse the typos ect...I'm really more inteligent than I seem ::)
Title: Re: very frustrated
Post by BB on Sep 11th, 2006, 7:33pm
Hi Wysper

I am so sorry you have so much trouble and so much pain. I agree totally that some if not most doctors are have very little knowledge of CH, they dont get taught much at all about the condition as its deemed to be " so rare that you are unlikely to see one in your entire career".

I am a GP and prior to witnessing my DH going through his 1st cluster attack 5 weeks back, my medical knowledge of it was " a rare condition where one gets severe headaches with XYZ syndrome, difficult to treat, refer to neurologist is diagnosis is suspected" !  ::)

When my DH had an attack so bad that he developed slurred speech and weakness down the left side of his body and had temporary loss of vision in his left eye ( this is in the first week before any of the medication started to work ) I took him to the hospital worrying that he could have a brain haemorrhage or something. The staff there had no idea. He was in a KIP10 and all they were doing was kept asking him what drugs he had taken!!

I had to barge my way in, physically pushed the resident ER doctors aside, grabbed the 02 for him then used my mobile ( which was a no no in ER ) to call the on call neurologist and demanded that he came to see my DH right NOW! Well, he received good care and attention after that.

I shudder to think what would have happened to him had I not been a doctor! So I sympathise with you entirely.

I can help anyone with CH here in Australia by contacting their doctors if they are being ignorant or difficult. However, I dont know if I can do anything to help convincing one in the US. However, if you wish, PM or email me privately and see what we can do.

All the very best, painfree wishes to you.

Take care.

Annette
Title: Re: very frustrated
Post by BMoneeTheMoneeMan on Sep 14th, 2006, 1:19pm

on 09/11/06 at 15:30:27, wysper wrote:
you know, I did just that... printed out all the info I could find and he refused to look at it, said I was self diagnosing



Self diagnosing is better than mis-diagnosing.

What an idiot, he should have his license taken away for refusal to learn.

PF wishes to ya
B$
Title: Re: very frustrated
Post by wysper on Sep 14th, 2006, 3:08pm
So I decided to call my neuro's office today just to check and make sure that my doc knew what ch's were and if he had treated anyone with them. Well, God is smiling upon me today because the receptionist I talked to said that a doc there (not my doc) had treated her mother for ch's and that she would make sure that I got the proper care and even schedule me with the doc that treated her mother if she had to. FINALLY I feel like things might go my way. It's nice to feel like i might actually get some help. I've been sitting on my pitty pot for 2 weeks now and bringing my girlfriend down with me. She's been quite the trooper I tell ya. Gets up with me everytime and holds me and rocks me.  Mostly picks on me about the back of my head swelling up during an attack. "Always knew you had a big head but now here's proof".....funny she is. I didn't realize how much my head did swell during an attack till she pointed it out kinda crazy, and as soon as it over it's back to normal. I'm just rambeling at this point but thanks to everyone for being here.
Title: Re: very frustrated
Post by thebbz on Sep 14th, 2006, 10:11pm
::)
FIRE THE DOC, you should be a team. He or She should listen to you the mostest.
Quote:
Why is it that the people you need most to understand don't?

We do. ;)
I wouldn't trigger the beast for any doc. A good neuro wont need it. As far as your phone call to the neuro, good job. It always helps to smooze the nurse.. [smiley=laugh.gif]
Good luck with the doc.
Title: Re: very frustrated
Post by kcopelin on Sep 14th, 2006, 10:36pm
Hey BBZ,
sometimes, you know, drastic measures are called for.
kathy
Title: Re: very frustrated
Post by thebbz on Sep 14th, 2006, 10:43pm
;;D
Ya punch the doc in the nose and tell him not to self diagnose [smiley=laugh.gif]
just kidding ;;D
After so many times of arrogance from ignorant people that happen to be doctors it does become frustrating.
Rock on Kathy
jb
Title: Re: very frustrated
Post by chopmyheadoff on Sep 15th, 2006, 5:58am
lol i had one doctor telling me that i was watching too much telly and stressing myself out and that was causing these headaches.

and then whan i actually burst into tears in her office she said i was trying to manipulate her !!

i had to stop myself breaking her nose.

keep looking - i have the best doc in the world now !!
(except bb  ;) )

choppa
Title: Re: very frustrated
Post by wysper on Sep 16th, 2006, 8:39am
The messed up thing about my doc is he happens to be my girlfriends boss. We constantly do favors for him like clean his house, pick up his dogs from the vet, we even helped him move. I figured he would at least treat me like a human being. I didn't expect special treatment but come on now, I cleaned his f-ing toilets. Oh well, just goes to show you how people can really be.
Title: Re: very frustrated
Post by Theresa on Sep 16th, 2006, 9:12am
I once had a nurse in the emergency room ask me if I even tried taking an advil before showing up there.  I had to count to ten to calm myself down or else I would haved ripped her face off.

Some poeple are so ignorant.
Title: Re: very frustrated
Post by BB on Sep 16th, 2006, 9:58am

on 09/16/06 at 08:39:38, wysper wrote:
The messed up thing about my doc is he happens to be my girlfriends boss. We constantly do favors for him like clean his house, pick up his dogs from the vet, we even helped him move. I figured he would at least treat me like a human being. I didn't expect special treatment but come on now, I cleaned his f-ing toilets. Oh well, just goes to show you how people can really be.


Wysper,

Ditch this doc, he is shame to a medical profession. There are better , more dedicated ones out there.

Too bad he is not in Australia or I would have given him a piece of my mind as "peer review"  >:(

Annette
Title: Re: very frustrated
Post by Katherinecm on Sep 16th, 2006, 10:56am
If you're in the USA and you get such crappy treatment from your doctor, please first find a new doc, and then file a complaint with your state's medical review board. You can probably do so online. Enough complaints and the idiotic doctor will either do more research or stop treating patients with CH altogether.
Title: Re: very frustrated
Post by maffumatt on Sep 16th, 2006, 11:21am
I love my doctor, when he told me that I had CH, in his years of practice I am only his second CH patient, his first being an AIDS patient during his residency. He didn't know much about CH, but after the first few rounds of drugs didn't work he picked up the phone and called for advice. When I found out my insurance wouldn't pay but for two Trex nasal sprays, I got a call from him the next afternoon, he had personally gone to every clinic in town and got their samples. When nothing was working and I was getting hit he told me to come in even if the receptionist said there was no opening, I did that once and he tried O2, it worked. He told me once he practices medicine, he doesn't know everything, advances has been made since his last CH patient and he is taking the opportunity to learn. My doctor is a good man and i respect him a lot.
Matt
Title: Re: very frustrated
Post by jmorgan52 on Sep 16th, 2006, 11:22am
wysper you are lucky that there is a GOLDMINE FULL OF INFORMATION on this board. If you are up to it I suggest to really educate yourself in the time left before you see your next, (hopefully very helpful) doc, on the options people are using here. My guess is you may then know far more than him on the subject.

Old timers who have had this problem for 40 years or more when no internet research was available and all the "headache books" told us we had migraines and to avoid chocolate and red wine and the docs sent us for physio or chiro treatments and told us we were stressed out or such like.

Around 1995 I went to a neuro who told me I had cluster headaches. I had never even heard of the term before and neither had my GP. He described the pain exactly as I got it (this was a all a mystery to my GP!) He put me on Lithium which did nothing except leave me half brain dead most of the time, then we went the route of trying everything from Prednisone to Narcotics with no relief.

Eventually about a year later he called me to say he had heard of a new wonder drug for migraines and gave me 2 imigran injections (imitrex in USA) for use "in extreme emergency only" (what a joke!) the first time I used one it was like a miracle! It stopped my CH in minutes. NOTHING else I had used ever worked in the past. I have used 100's since then with no problem except the damn cost.  :'(

Personally I recommend you ask for this as a first line of attack while you try out the various preventatives or maybe the "alternative treatments" that you will find plenty of here that work for some.

Just go armed with knowledge.

Good luck next week

John
Title: Re: very frustrated
Post by artscribe on Sep 18th, 2006, 3:51pm
It sounds like the neurologist's office may work out really well for you. Good luck. I have a fantastic doctor. After decades of "you have a sinus infection," "you have migraines," "you have panic attacks," "we don't know what you have," she diagnosed my clusters. At the time I didn't know that such a thing existed. Even better, she admitted that she didn't know a lot about them, helped me get around my insurance, and even directed me to this site. She's a gem.
Title: Re: very frustrated
Post by wysper on Sep 18th, 2006, 4:45pm
Well, I go first thing in the morning. my gf's going with me. I'm glad for that cause she can vouch for me and share her experience with the doc. Wish me luck


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