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Topic: Why can't we do something about _this_.... (Read 889 times) |
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otakuhouse
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Why can't we do something about _this_....
« on: Feb 3rd, 2008, 5:57pm » |
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Hi everyone,
I used to visit at the old board. My last severe borderline sanity affecting bout was six years ago, and back then I found that your company and advice here probably saved my life given how desperate I was at the time. Three years ago I got hit again and had some rough times but i was prepared (not however for the evil Neurologist at Swedish medical in seattle who ordered her nurse to TAKE ME OFF oxygen when I came in for an appointment during an attack)
I'm also lucky in that my family offers financial assistance when I get hit with this; which I know is exceptional and very few have it that good.
I want to do something positive, and it's in my nature to organize and protest, and I'm at a breaking point when it comes to certain issues.
I also go through the rigarmorale every time of obsessively using the Net to read read study up and look for the miracle cure and I've tired them all but the simple fact is there is none. I now accept this.
Like a lot of CHs though when it goes into remission and I'm pain free I try to forget the condition ever exists. We all probably share the same guilt along with many other sadnesses that go with the condition given that some have it worse than us. I can't let that take hold any longer. Maybe that's why it's hard to remain apathy free - when it's in remission I don't do anything to help.
Right now I am so ****ing fed up with the beauracracy of health insurance, miseducated doctors and nurses, frustrating visits to the ER, and we all know the particular hell of concerned but naive loved ones. I'm lucky to have a very understanding wonderful neurologist (Dr. Cesar at the Columbia NY headache center, please see him if you're in NY looking for one).
Here are some basic things I wish would happen in a better world that we can fight for.
Why do some health professionals remain ignorant and sometimes get in your way of access to oxygen when it is of enormous help and has few side effects?
The few times I've ended up in ER (across the country) desperate I have every single time had to declare that all I need is maybe some oxygen as a frontline abortive and I've been turned down or had to marshall my will through the pain to insist upon it only to be given blank stares and condescension. This needs to stop, period. Every ER in the country should be aware that a CH incoming should be admitted to triage immediately and attempt to get oxygen. It's that simple! Why doesn't it happen?
Furthermore I now have a scrip for oxygen and have wasted three hours a day on the phone trying to find a supplier.
On the advice of others I go to my local fire dept - i'm lucky to have one around the corner from me. The guys there are great, understanding, more appreciative than most ER nurses in my experience, but they tell me that they would totally give me oxygen but they would have to call an ambulance that I would have to sign off on when it arrives that I WON'T NEED.
I don't want to tie up an ambulance I don't need! I don't need painkillers, or to even speak to a doctor. I just need occassionally to hit oxygen, and easily find a way to keep it in my home. But it's a freaking nightmare out there.
Despite the clarity and unusual specific symptoms why do some health prfoessionals - even neurologists - have the wrong information about cluster headaches?
How can we fight to name this condition so it reflects respectfully the severity of the condition and keeps people from ignorance?
I have a scar on my wrist to prove that the suicide headache moniker is not inaccurate. Cluster headaches just doesn't cut it, and language is important in getting people to understand quickly and clearly. This isn't just a headache, it's an existential condition. I'm also amazed by the number of people I meet who say "oh i have cluster headaches" when they most obviously do NOT. A nurse the other night told me she has them and all she has to do is pop a motrin. Who is telling them they do?
My father tells me on the phone the other day after seeing his young green neurologist that I do not have cluster headaches because according to this doctor the only thing that proves cluster headaches is a runny nose. WTF???
A good friend who genuinely suffers from severe migraine but has none of the specific cluster headache symptoms keeps insisting she has cluster headaches but I'm loath to tell anyone from my experience that they are wrong. But she is... If I could pop a cod / tylenol pill to take care of this i'd gobble it like candy.
I'm convinced that something that would make an immeasurable impact in our lives would be to have some sort of organized mass information campaign for health professionals to recognize the severity of this condition, and how simple access that doesn't need to cost them or health insurance too much money would improve our lives immeasurably. Those long timers and better people than I who are here on this board constantly and take part in these conferences can probably answer all these questions and have been down this road before.
But I can't take the ridiculously absurd circus that goes with cluster headaches any longer and I want to do something about it. To me it's simple - mass education, a proper name, and proper information to the people who need it. That to me is not too much to ask so we must gather all the anger these headaches give us and put it in the right place.
Anyway here comes my evening Kip 6 - wish me luck and see you on the other side.
Thoughts?
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| « Last Edit: Feb 3rd, 2008, 5:58pm by otakuhouse » |
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vietvet2tours
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Re: Why can't we do something about _this_....
« Reply #1 on: Feb 3rd, 2008, 8:24pm » |
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Go and lease yer own tank.
Potter
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Annette
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Re: Why can't we do something about _this_....
« Reply #2 on: Feb 3rd, 2008, 8:35pm » |
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on Feb 3rd, 2008, 5:57pm, otakuhouse wrote:
... To me it's simple - mass education, a proper name, and proper information to the people who need it. That to me is not too much to ask so we must gather all the anger these headaches give us and put it in the right place.
Thoughts? |
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Its not that simple, people have tried for years, progress is made but its slow.
I am glad you want to do something about it, so set yourself some goals and let us know how much you achieve.
Reality is often different from imagined ones.
Good luck and painfree wishes.
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Bob_Johnson
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Re: Why can't we do something about _this_....
« Reply #3 on: Feb 3rd, 2008, 9:32pm » |
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I offer this only as explanation, not as justification. The reality is that the amount of education a physician receives reflects, to some degree beyond my understanding, a judgment about what conditions the practicing physician will see in the office. We are a very small minority of patients. (Shall we be happy for the masses?)
Medicine is a very conservative profession, further impeding awareness and adoptation of the new....
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Medical education in headache
Posted 9/26/07, MEDSCAPE
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Abstract statements from a study of headache education in medical programs. Second para. specific to neurological residency training. Gives good idea of why it's difficult to find a sharp doc.
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"Objective. To explore the extent of headache education received by medical students and residents.
Background. Headache is a common, often severe, and sometimes disabling problem. However, 49% of sufferers do not seek professional treatment -- of those who do, only 28% are very satisfied. One possible reason is limited education of physicians about headache.
Methods. Surveys were sent to all allopathic and osteopathic medical schools, 200 family medicine residencies, and all 126 neurology residencies. Information requested included the amount and perceived adequacy of headache education and any plans to increase headache education.
Results. Response rates were 35% to 40%. Medical school lecture hours ranged from 0 (4%) to >5 (24%) with 92% having no plans for an increase in headache education. Family Medicine residency lecture hours ranged from 1-3 (30%) to >5 (34%) and case presentations from 1-5 (23%) to >5 (41%), with 88% of program directors having no plans for increase. Neurology residency lecture hours ranged from 1-3 (11%) to >5 (64%) and case presentations from 1-5 (23%) to >10 (57%), with 80% having no plans for increase.
Conclusion. Undergraduate medical education in headache is limited. Despite medical schools perceiving their training as adequate, both neurology and family practice residency program directors believe entering residents are inadequately prepared in headache upon entering the program."
"Neurology Residency Programs
Neurology residency program lecture hours varied from 1 to 3 hours (11%) to >5 hours (64%) (Figure 2). The number of case presentations ranged from 1-5 (23%) to >10 (57%) (Figure 6). Forty-two (95%) of program directors believed that their headache education was adequate (Figure 4). Interestingly, 20% of neurology programs indicated plans to increase training in headache management. Similar to the family practice programs, 68% of the program directors believed that new residents had inadequate knowledge about headaches upon entering the program while only 11% of the program directors believed that their residents were well informed about headache."
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Linda_Howell
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Re: Why can't we do something about _this_....
« Reply #4 on: Feb 3rd, 2008, 10:23pm » |
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Go here: http://www.ouch-us.org/index.shtml
If there is anywhere that you can make a difference it will be here. Add your name to our org. in any way you feel you can help. We welcome any talent you have to help the medical community to understand and treat us better.
Linda, Chair of Family Services for OUCH
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Guiseppi
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Re: Why can't we do something about _this_....
« Reply #5 on: Feb 4th, 2008, 10:10am » |
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You're coming in at a great time! We have writers on the board getting articles published about CH, we have our own "documentarian" getting info clips onto main stream media, as Linda said, it's a slow go, but progress is definitely being made!
Get signed up wit OUCH and as we like to say, get your oar in the water! Wishing you a short cycle and a LONG remission.
Guiseppi
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5Almigos
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Re: Why can't we do something about _this_....
« Reply #6 on: Feb 5th, 2008, 4:55pm » |
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Hi there,
I completely understand your frustration. I've been having CH for 18 months non-stop, with an average of 3 attacks per day. I did a lot of research to finally dx myself. Lucky for me, my GP bears with me. I am also seeing the most wonderful Doc. in he world. He is an holistic Doc. and I hope, that we get this beast under control.
I also have Lyme disease, that's why I'm seeing the holistic doc. in the first place. You won't find much knowledge or understanding about Lyme, either.
I was hospitalized in Dec. The attacks kept coming every other hour and I just couldn't do it anymore. I had an MRI, CT, LP and last week an EEG. I saw an neurologist, an neuro surgeon, an endokrinologist, an infectious disease specialist and an internist. They all made me leave the hospital after 2 days, because all tests came back negative. I had an follow up with the neurologist. He diagnosed me with migraines and still doesn't believe, i have Lyme. Where do all the symptoms come from, then and why didn't pain pills ever cut down the pain? I took about 10 Vicodins a day and ended up with severe rebounding pain. Now, that I've managed to live without narcoytcs, they want me to try Fioricet. DUH! I'm not going there again, addiction is pretty bad.
I also have a chemical sensitivity. I can't tolerate most drugs. I tried Tegretol, Topamax, Percocet, Vicodin, Imitrex and Depakote. I can't tolerate either one of them. I'm taking Dilantin at the moment. I weigh under 100 lbs and 400 mgs of Dilantin leave me completely whacky. I'll try Oxygen, water and some of the drugs mentioned here. If it wasn't for my husband, I'd probably lost it by now but he gets me through the first 30 minutes of misery, after that, I can manage. We have 3 little kids, are self-employed and our lives went down the drain.
Keep educating yourself and share, what you learn with those, who want to listen. No use talking to deaf ears or know-it-alls. i tried educating my mom about Lyme to make her understand, why we do what we do. Not much luck there! Same with CH.
Contact me at any time, if I can be of help.
Be better,
Sonja
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otakuhouse
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Re: Why can't we do something about _this_....
« Reply #7 on: Feb 5th, 2008, 6:26pm » |
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Thanks for all your comments. I always end up back at this message board. But as my neurologist ponted out yesterday, he knows his cluster patients are ok when he doesn't hear from them. We tend to stay away when it's over.
But I still cannot get over the attendant beauracratical nightmare and circus that we go through with this that increases stress, expenses, and eats up our time. I spent four hours on the phone with my health insurance yesterday because someone accidentally tried to authorize me for 6 mg imitrex tablets as opposed to 4 mg injections. Result being that as the drug does not exist, refused authorization and i had to go without and ride it out this weekend. As a result I ended up sucking oxy in an ER when on top of a headache a dose of verapamil made my veins go green and breaking out in a rash. After watching two nurses argue with each other about their shifts and breaks and people stopping to watch the super bowl.... And demanding to get oxygen, I was finally given some.
By the oxygen in the emergency room there was a sign that said "asthma center"
I know it's a tall order, as it's far less common, but I wish it would say "cluster headache center".
I am also so f******g furious that I am treated like a drug addict and suspiciously when I endeavour in my life to live clean.
As for the last poster, I feel your pain, and recommend you keep hunting for the neurologist who's right for you. Don't settle when it comes to that. A good neuro who truly understands has made such a huge difference in my life overall.
It turns out I'm allergic to Verapamil so I've had to go off it and the headaches have returned.
But last night i realized that the headaches are the toughest thing I've ever dealt with, yet they won't kill me as long as while I'm in an attack I remember what I have to be grateful for in life. When the headache's done, it's done.
The cocktail of meds I was on make me mumble in the middle of the night that I'm dying and I had chest pain and shortness of breath and fatigue.
I do not have it as painful as you do, friend, so I can only offer my wishes and thoughts - and share that remember, the headache itself won't kill us.... We know what it is and what it will be like once it's over.
More later... Need to get away from the computer again...
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writer
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Re: Why can't we do something about _this_....
« Reply #8 on: Feb 8th, 2008, 12:54pm » |
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You seem to express yourself very well. Q: have you ever considered writing an article about CHs and the frustration of all sufferers?
As you know, most people have never heard of a cluster headache. So publication explaining this rare and agonizing ailment might pique their curiosity and result in strong readership.
Almost any publication you can imagine has a good web site with specific instructions for submitting articles. Read a few and you might get inspired??
I will help if I can--
Regards,
Barbara
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