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I wish doctors would figure this out


didgens
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Im sorry ,, I just get so frustrated with "well ,, we don't know what causes this .. so blah blah blah blah'  Well why the hell don't you know ?? your doctors for Gods sake ,, ??? your supposed to be curious ,, your supposed to be researchers and care about finding OUT WHAT CAUSES DISEASE .. aren't you ?? if not why the heck are you even doctors ..

gee .. was that a good enough rant .. sorry ,, It just chaps my hide.

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Dear didgens,

The more we know in medicine, the more we know what we do not know. We only understand a minority of disorders to the full extent, and many hardly at all. The complexity of biology at cellular/genetic level is the problem.

Even if we do not understand the root cause of most disease, at least it can be defined and classified. Putting a name to something is of benefit to patients and that allows us to treat, often with some clinical trial backing, as we could define a disorder, which enables one to study better.

What really bothers patients is actually the lack of good treatments, and venting about lack of cause is a secondary issue. You would rather good treatments and no clue about root cause, rather than bla treatment and good understanding of the disorder. When there is great treatment for a disorder, the lack of understanding is a mere curiosity to patients  ;)

BostonHeadacheDoc

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Didg...I am in total agreement with you, its like they got their medical degree and now just resting on their laurels.  When we were living in Baton Rouge my primary care doc had been treating me for "headaches" for about 4 years, they were getting worse and worse.  (didnt know I was a headbanger at that time) He kept giving me stronger and stronger narcotics, which (gasp in shock) didnt work.  After 4 years of this treatment with no relief I did a little research on my own and found this "new" condition called clusters.  I presented him with all the info and asked him what he thought.  He looked me in the face and told me I needed to see a psychiatrist.  I am not going to repeat my response to him here (it involved a LOT of bad words and specific directions on where he could put his suggestion).  But in  hindsite this was actually a good thing, because when I got home I went online to find a new doctor and saw pain management, I figured that this was pain...maybe they could help me manage it.  They saw me that same day, and the sweet little fresh out of med school doc diagnosed me with episodic clusters within about 5 minutes.  So not ALL of the docs are bad...dont hesitate to fire them...sometimes they get the God complex and forget who they work for...HUGS! and PFW!!! 8-)

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OK Fab.. you cracked me up there.  Yeah the First Neuro I took my son to agreed with me it was Clusters ,, but when I asked for an O's prescription he just laughed and said we didn't need it.. Needless to say we "fired" him and went to someone else.   BHD .. sorry in my book if you don't know what causes a problem you really cant fix it.  if seeds and shrooms alleviate it find out why ,, then you'll find the cause.  if it can be triggered by inhaled nitro .. find out why .. then you'll find the problem .. H E L L O

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Interesting dynamic here, in that the doctors who practice medicine are not the doctors who research, and vice-versa. I don't blame them individually, it's kinda like the guy who designed your car isn't the same guy who works on your car when it breaks.

Want to move the science forward? Do it yourself. You'd be surprised at how easy it is to learn about the brain, its mechanisms, cluster headaches, etc.

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Hi,

I can totally understand your frustration and that this annoys you like hell but then, cluster headache is a highly complex disease. Reseachers already know a great deal about the pathogenesis of cluster headache, but you should think of it as a huge puzzle- some of the pieces have already been put together but others haven't yet, because there are still some missing and/or doctors simply don't know how to put them together.

When I tried to understand the pathogensis of CH, I nearly freaked out because it's so damn complex. One thing that researchers are still missing is something like a "key ingredient"- we roughly know what happens and we can identify what goes wrong to some extend, but we don't know how it all works together to make a cluster headache. Think of it this way: neurophysiology itself is already very complex and we probably only know 1% of how it all works (if it's even 1%), then try to imagine how difficult it must be to figure out how how a pathological mechanism works when we don't even know how the "normal" mechanisms work.

My doc is actually a researcher, too. In fact, he is one of the leading researches when it comes to cluster headache. He really does a hell of a lot for us CH sufferers but I guess it all just takes time (unfortunately). In research, paradigms play a big role, too. And I feel that CH research does need a paradigm shift in one way or another, because what has been investigated so far all seems to go in a similar direction. That's just my impression though. Perhaps one day we'll find out that we have found out so far may be correct, but that we have overseen or just simply ignored something of vital importance or even discover a completely new approach.

I know, it's easier said than done, but hang in there! I'm pretty certain that CH research will bring about some really good results in the next couple years.

Tim

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I met a doctor last week that just opened some walk in clinics.  I thought I would amuse myself and ask him how they might help me if I came in with CH's.  He said "High flow O2 would be a great start".  I was pleasantly surprised.  Maybe a few people are starting to pay attention... maybe...  wrong crowd to go into busting but I will next time I run into him.

I find that a good bust can help a lot of frustration!

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I met a doctor last week that just opened some walk in clinics.  I thought I would amuse myself and ask him how they might help me if I came in with CH's.  He said "High flow O2 would be a great start".  I was pleasantly surprised.

To me, this is just one more sign that we are getting the word out!

Everyone here should give yourselves a pat on the back!  :)

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  • 2 weeks later...

hey RH ,, yes it is complicated in that it involves "un-related" fields of study in combination. if that makes any sense at all.   I will use my husband as an example.  He was recently diagnosed with stage IV lung cancer.. ya know how long it took to get that diagnosis ?  1 year, ,, yep .. a whole stinkin year !!!!  why ?? because he was shipped to this doctor and that doctor ,,, had needles stuck in his neck for arthritis etc,, physical therapy .. blah blah ..  because these doctors aren't learning about all the things that certain symptoms together mean ... they don't think ,, lots of them just spit out stuff they learned froms books in med schools ,, they don't look at the hard patients and say ,, "hey ,, I wonder if ??"  or "maybe I should talk to and ENT , or a spinal specialist or a .. on and on " you get the picture ..  there isn't a "whole Head Health" doctor out there ,, just ones that know bits and pieces of the jigsaw puzzle ,, but all the other pieces are turned over .. they aren't willing to flip them over to see where they fit together ,,, whew .. that was quite a rant there ,,, oh my ,, I feel so much better .....    ROFL .. thanks all

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Hey y'all! I just wanted to put my 2 cents in....I think the fact that there are so many "specialists" is a real contributing factor to the problem.  You have a heart doc, a lung doc, a brain doc, a blood doc, a general doc, an infectious disease doc, a bone doc.....the list can go on for days.  From what I know from personal experience, and from everything I have read, the cause of CH probably is two fold, maybe even three fold, involving a physical abnormality of the hypothalmus (the extra layer of cells that grows around the gland ), a psychological abnormality in the way a CHer deals with stress, and the emotional symptoms(not sure yet if the emotional symptoms are a cause, or a product of the condition)  But seeing how many fields this condition spans, its quite difficult to find a doctor who can see the broader spectrum.  I guess in one way specialists are a good thing, because it allows a doc to know a lot more about their area of study, but the systems of the human body do not work independently they work together, and if one of the systems has an issue, it affects all the rest of them.  Now that I am having a little bit of PF time during the day, and actually sleeping 5 hours a night (thank you seeds) I have decided to follow the advice I have seen on the board and experiment a little.  My first experiment is to get rid of the stress.  After the long horrible episode I just made it through my body is trashed, my emotions are on a roller coaster, and I am afraid to even go to the grocery store alone ( I got hit in the drugstore during this episode, wasnt pretty) So I am doing a lot of meditating, reading a lot of books on living stress free and working to identify underlying causes of stress that I have buried.  Also doing yoga and listening to relaxing music and meditating.  I will let yall know how it works.

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  • 3 weeks later...

It took a doctor who suffered from migraines to diagnose me correctly. But really, I self-diagnosed and she agreed with my diagnosis. Prescribed me verapamil, told me to lay off booze, within two days the CHs were under control. At least, for a while.

Before that id been prescribed some pretty awful sh*t. Amitryptaline, carbamazepine, tramadol, codeine.... All to no effect.

A doctor told me it wasn't medical... And sent me to a dentist who told me I needed my wisdom teeth on my affected side out and two molars top and bottom (what a waste of good teeth....). That will coat me a fortune in the future... Implants and the like.

Despite the prevalence of CH being the same as MS in the population, and for some it is just as disabling, there's a real lack of funding and awareness of it.

Mysteries of the brain eh? Mysteries of the brain...

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I did have some pie in the sky hopes that when my sons Wisdom teeth were removed he'd get relief ,, to no avail however,, he does tell me know that he can feel the pain back behind where the removed the wisdom teeth.   I had read one post somewhere where it was suggested to put ice back on the joint in the back of the mouth (hinge area) inside the mouth between the upper and lower teeth .. my son said he thought it helped a bit but never continued once we got the o's

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Yes. The first place my diagnosis started was at my wisdom teeth. All removing them did was cause me additional pain due to the surgery. And bad rebound headaches from the codeine. What a waste of good teeth.

Now my no6 molars are crumbling away due to a lack of support and protection on that side.... Should sue the NHS for failing to properly diagnose me and get some porcelain nashers put in instead.  ;D

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