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Chronic Daily Headache on the Johns Hopkins website

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dcook60
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Post  Laura Fri Nov 25, 2011 3:29 am

This is encouraging - NOT! From the Johns Hopkins Headache Center website:

"Over 90 percent of patients with CDH [chronic daily headache] have co-existing psychiatric problems, most often anxiety or depression (or both). This makes an already challenging condition even harder to treat. In general, such patients will not improve without some sort of co-existing psychiatric care, counseling, biofeedback, or the like. Unfortunately, few patients choose to undergo this necessary step toward improving their condition and reducing their disability."
http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/headache/conditions/chronic_daily_headache.html

I've read that Johns Hopkins is one of the best places in the U.S. to go for migraines. But do they have to be so blunt? - "few patients choose to undergo this necessary step " - sounds like they are blaming the victim.

I've done the biofeedback and counseling in the past. It didn't fix me. And my current insurance is so lousy I can't afford psychiatric care even though I know I'm an anxious person. I've tried and am trying. Tonight I'm up at 4:30 in the morning and I know this will trigger a headache. But sometimes The Sandman fails to pay me a visit.

OH well - at least I was able to enjoy Thanksgiving with a mild headache at about a 2 out of 10. I am thankful for that.
Laura
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Post  dizzyflower Fri Nov 25, 2011 6:16 am

By being here you are not in the category of one of the patients they talk of who are not making the effort to help themselves, you are part of a support community.

There are free CBT websites around that have helped me a lot (Cognitive Behavior Therapy) from experience of seeing professionals they only go through the same stuff anyway, I knew it off by heart by the time I saw mine, and by talking to folks on this website you are doing something and taking control.

Best wishes

Di

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Post  dizzyflower Fri Nov 25, 2011 6:21 am

By the way there has been a lot in the UK press lately on panorama I think about sleep and how it can aggravate or even create serious health problems. You might find some of it interesting as they took someone who doesn't suffer with it and made them be awake for the same time as someone who has sleep difficulties. A lot of the trouble we get with migraine started to affect the person within 3 days, like poor concentration, headaches, aches.

best wishes Di

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Post  Laura Fri Nov 25, 2011 10:28 am

thanks for putting that into perspective and thanks for the info. I've used CBT in my counseling, but maybe refreshing my memory by reading though a good website or two is a good idea.

I suffer insomnia more often than I'd like - and I definitely find it is a trigger. Interesting news about the study keeping people awake.
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Post  tortoisegirl Fri Nov 25, 2011 3:12 pm

I can see this, but I don't think they put enough emphasis that in many (or majority?) of cases, the depression, anxiety, etc, are caused by the headache, not that they are causing the headache. I have had a couple doctors insinuate that I should seek therapy. One said flat out because I didn't respond to two meds and due to what I told her about my childhood, she wouldn't treat me until I went to therapy. If they took more of a stance that there are psych issues cased by the pain and different therapies could help, I'd be more willing. I haven't though found much data showing these therapies helpful (mostly just case studies of a handful of people, or anecdotal). Its something I'd like to do someday. Talking through feelings can always help. Wish there weren't so many hindrances such as stigma, lack of insurance coverage, and doctors taking the "its all in your head" approach vs. chronic pain can cause psych problems. Best wishes.

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Post  Kate Fri Nov 25, 2011 5:11 pm

Wow, pretty arrogant of these Drs but what is new.... You would think by now that they would have a clue but apparently they still don't. I would say people get depressed and anxious because they don't feel good and are in constant pain. Not to mention the other effects before and after the m. These Drs who wrote this need to feel a migraine for 30 days to just get a taste of what I have to deal with. Idiots....

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Post  dcook60 Fri Nov 25, 2011 7:52 pm

well said, kate. idiots, for sure. it's hard to believe this respected (for other disorders) clinic had the gall to blame the victims, once again.

it's so obvious to we who suffer that this is a physical disorder, or cluster of disorders. i have never been depressed in my whole long life, even though a lot of bad stuff has happened to me. and happens to every person on the planet.....

it's DISCOURAGEMENT we feel. how can supposedly smart doctors not get this? dianne
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Post  Migrainegirl Fri Nov 25, 2011 8:13 pm

Well that is a very useful article. It tells me not to bother with Johns Hopkins for help.
Counseling therapy is not what people with chronic migraines primarily need. It is only normal that people who feel miserable day after day for YEARS, with little help from medicine, would start to feel depressed about their quality if life and prognosis. Additional issues with seratonin drops associated with migraine could also contribute. But in both cases if you fix the problem, the depression instantly clears.

There may be some people for whom counseling in advantageous to help deal with general coping issues, just as in the general population. But it won't cure chronic migraine in any case I've heard of. If the official position of that program is that all migrainuers need counseling, then it tells me they don't understand migraine and are playing blame it on the victim for being nuerotic. It's positively antiquated and backwards. They are living in the 1800's.
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Post  Laura Fri Nov 25, 2011 9:24 pm

I was wondering if I was just being overly sensitive. But reading your responses I can see that it isn't just me. I'm sure it is frustrating for doctors to work with patients that don't get better. But, any oncologist who would tell a cancer patient that unless they get counseling the treatment won't work would be called an idiot.
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Post  Jul Sat Nov 26, 2011 12:28 am

I've read this kind of thing before during my many hours of research on migraine. What I don't understand is this....yes I have anxiety issues, yes some days I am depressed but I know why this is and its not because of some trauma or another I have in my past. Its because I suffer from a very painful debilitating conditon....YES MIGRAINE!!!!!!!!!!! Its not that hard to understand lol...

I had a wonderful childhood, a loving family, I am very lucky. I've had a pretty average life with some ups and downs as we all do, I've been through a divorce ect but nothing that most people don't also have to deal with in their lifetime. I was also a very outgoing sociable person before these migraines came into my life. I never had anxiety or depression before this time. My anxiety is caused by the constant worry of doing something wrong to trigger another migraine and suffer days of excrutiating pain. My mild depression is caused by how small my life has become in order to adapt around these migraines and avoid all my triggers.

My arguement on this theory is that if my migraines are caused by some underlying mental issue that I have that I need treatment for before I can be rid of them, WHY did I get the migraines in the first place if there was nothing wrong with me??! I was a happy go lucky 20 year old enjoying my life with no worries at the time I began to get them.

Also I am not so sure about the rebound headache theory, at least in my case. My headaches come and go in waves. I may have a month where I have them constantly back to back and seem to be forever taking medication. I then worry that I am giving myself rebound headaches, but then just as suddenly as they come on I may have a 2 weeks blissful gap where I get no headaches at all completely out of the blue they stop. My body does not then crave the medication, I simply just do not need to take it because I'm not in pain!!!! I no longer worry about rebound headaches as I know that many times I have just simply stopped taking anything with no ill effects at all.

There I've had my little rant, feel much better now! Very Happy

Hope everyone is well today Smile

Jul
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Post  Mini Sat Nov 26, 2011 3:59 am

"Unfortunately, few patients choose to undergo this necessary step toward improving their condition and reducing their disability".

The above statemnt from Hopkins is as ridiculous, as it is deliberately misleading.
Any doctor who makes such suggestion is obviously a poor doctor who knows nothing about either migraine, or psychiatry. Becasue NO ammount of psychiatric treatemnt would reduce a single migraine.

Obviously with this approach anyone who makes such suggestion is to be avoided at all costs, named and shamed on all migraine forums as sceintifically ignorant of this condition. No one with this attitude has any business treating people with this condition becasue they suggest an inapropriatet approach to migraine treatemnt.

Their statement tells me one thing:
they are obviously coveringr themselves up, for their own lack of success in treating CDH. So beware. They are just passing the buck!

There are millions of people who live with severe depression and anxiety, but who never had a single migraine in their lives. There are many of us here, who suffer with migraine all our lives, but do not suffer from depression, even if we get often fed up, and weary from too much pain and disruption to our lives it causes. But this is not the same as depression which would need psychiatric treatment. This statemnt is a nonsense.
Apart from anything else they have mixed symptom, with the cause: depression and anxiety can indeed result from having migraine, but they do not "cause" migraine.

To suggest that "curing" depression and anxiety by psychiatric treatemnt, would have any effect on migraine is a total nonsense.
Sadly many less capable docotrs still use this to cover up their lack of skills as docotrs. This is not uncommon,

BTW counselling can indeed be helpful, but for completely different reasons:
although counselling will never "cure" our migraine it is good to have somebody to talk to and to support us becasue our lives are constatly disrupted by dealing with migraine. It is good to have someone outside ones family and freinds to talk to about different aspects of living with this condition so we do not have to "dump" our frustration all the time on our nearest and dearest.


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Post  Kate Mon Nov 28, 2011 10:23 am

So I guess when I have an aura, it is caused by depression and anxiety....?? An aura is an obvious neurogical event. Therefore the cause being....neurogical, dah.

These Drs are narcissistic and I hope that other Drs that are legitamit will state the truth.

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Post  kathy Wed Nov 30, 2011 12:32 am

Well in the case of what came first the chicken or the egg?? In our case of course we have depression or anxiety! But it comes as a result of the migraines. When I make big plans the anxiety from worrying about missing it from a migraine is over whelming.

So... in my opinion the migraine came first.
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