New to this Site and have some questions

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New to this Site and have some questions

Post  Marty001 on Sun Jan 13, 2013 8:47 am

Good morning all. My name is Marty and I've just joined here and hope that I can get some help and offer some help too. I feel that the more info that we all have, the smarter we all can be in helping ourselves and each other. I've had headaches and migraines for about 45 years. I've been with the same neurologist since 2006 and we've tried virtually EVERYTHING in the book for the migraines, except opiates (she absolutely refuses them). I had Chiari Decompression Surgery in 2009 (against her advice - but I was desperate) and felt wonderful for 6 weeks. Unfortunately, I'm a failed Chiari patient. Everything came back with a vengence. Went back to work for a few weeks but couldn't manage it. I've been on disability now for close to 3 years after getting an attorney and having to fight for it.

When I can't get rid of the migraine, we go to the Emergency Room and I hopefully will get Dilaudid. This is the only thing that works for me. Some ER doctors refuse to give me Dilaudid. I have a pain doctor that gives me 10 dilaudid pills that are supposed to last me for 30 days.

My neurologist now wants me to go to a headache clinic to "learn to live with my headaches". Thia is a week long clinic. Has anyone ever gone to one of these clinics? What did they do for you? Did it help you?

I'd appreciate any responses and help that anyone could give me.

I hope everyone has a headache free day.



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Join date : 2013-01-13

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Re: New to this Site and have some questions

Post  dcook60 on Sun Jan 13, 2013 10:13 am

marty, i have a similar long history to yours. after going to new york city to a "chiari clinic" 8 years ago, it was determined that i had "chiari zero". (chiarians will understand what this means). i met several people there who had had the zipperhead surgery....some were happy, some very angry and disappointed.

i decided that since my brain wasn't herniating down into the spinal canal, i would opt not to have surgery, and i'm glad i did so. i can only imagine how dreadful a feeling it is, when you go through all that to find that you're no better, or even worse than before.

headache clinics: just putting my two cents here, because i've never been to one. but because i've been reading this forum since 1997, and researching all i could find, the consensus is that most/all clinics have the same drug regimens, in one form or another, and if the patient doesn't improve, then it's the patient's fault.

they recommend counseling. also, most of us HAVE learned already, how to cope with our conditions. it wouldn't hurt to get more ideas, naturally, but it's an expensive way to go about that.

as we who suffer know, pain doesn't have much to do with psychological issues; surely we ALL have some of those; we are human. it's real and excruciating pain, stupid (that's what i want to tell the multitudes of doctors i've seen). most can't relate, and throw drug after drug at a person. most don't work, and some make me feel unbelievably worse.

there is no real understanding of the mechanisms of migraine, and there are likely many many causes. until headache clinics get some facts behind them, i fear that people are going to waste a lot of money and time, without much, if any, improvement. yes, mayo clinic, also. mayo's is fantastic for a lot of conditions, but not for this one.

i imagine there will be some answers to your query which are helpful, as to clinics. i wish you every success, however you find it. one thing that stands out in your post is that you haven't changed doctors in 8 or 9 years, and she's run out of ideas. that's the perfect time to go on a search for a new neuro. sometimes, though, general practitioners or internists are more useful than a neuro.

some of these specialists will not be so paranoid about opiates. if you find one who would prescribe an adequate amount, you would be fortunate. none of us likes to live on drugs, but in order to get through life, most of us have to. the trick is finding the right one(s). if you've never tried the 7 triptans, try to do that asap. dianne

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Re: New to this Site and have some questions

Post  Angela0611 on Wed Jan 16, 2013 5:32 pm

Hi Marty

I too have same history as you except I didnt have the surgery one of the neuro's I had seen referred me to a surgeon for it but he refused to do it he said my migraines would come back with a vengeance and from reading your post apparently they do!! Sorry to hear that!! You know he actually recommended I try marijuana! Funny right, I've had 3 Doctors tell me that. Anyways!

I agree with Dcook60 u should try changing neuro's. I have gone thru 5 or 6 in the last 4- 5 years cuz they either gave up, didnt know what to do or I just didnt like them. I currently have 2 right now one in the city I live n one in Los Angeles and I see a biofeed back doc as well. I finally found a great GP doctor who actually believes me when I have a migraine and doesnt treat me like a drug addict cuz I've had my share of those doctors who look at you like a frequent flier!

Also this may be helpful I work in the medical field and I have seen and found out that some older docs are more sympathetic to patients verses the younger doctors. For example my neuro in town is a younger doctor and when I have a horrible migraine she will not give me any IV or IM meds, granted I do not have narcotics at home all I take is Amerge or Motrin 800 mg. luckily my Pcp will always add me to her schedule and give me Dilaudid IV. But my neuro in Los Angeles is in her early 60's she has and will give me Dilaudid IV. In my experience most younger doctors tend to be arrogant and the older ones are more sympathetic.

Either way I think u should at least get a second opinion from another neurologist or family or internal medicine doctor.

Good luck


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Re: New to this Site and have some questions

Post  3K9sMum on Sat Jan 19, 2013 9:01 pm

I agree that you should try another neurologist. There are a lot of them out there to choose from and I wouldn't think it would take many visits to figure out if it is worth continuing to see him or her. They can't all know everything about everything either. Maybe one will know exactly what you personally need. I was pleasantly surprised when I went to the one that I am currently seeing. He knew of a triptan I had not heard of before and had several things to offer that no one else had. Sometimes there are still glimmers of hope out there even when we think that there aren't. It is really hard to remember that when you've been hurting for a solid month but we all need to try. I looked for a neurologist specializing in headaches. I'm sure you already thought of that but I just thought I would mention it. Also, one thing that I have run into in recent years is that doctors offices are now saying on the phone when you call to make a new patient appointment that doctor so and so doesn't prescribe pain meds, opiates, etc. I would think that if you get one of those (and this is just my opinion) don't go. Migraines ARE PAIN. That doesn't mean we need prescription pain meds every minute but sometimes it comes to it and if the doctor can't understand that and write a prescription for enought to make it through a month if taken wisely then they shouldn't be dealing with migraine sufferers. Again, my opinion.

Good luck!

Last edited by 3K9sMum on Sun Jan 20, 2013 5:30 pm; edited 1 time in total (Reason for editing : replaced the wrong word)


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Re: New to this Site and have some questions

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