your thoughts, migraine treatment program.

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your thoughts, migraine treatment program.

Post  Guest on Thu Sep 02, 2010 8:30 am

i'm being offered a migraine treatment plan that last 3 weeks.

boiled down, they take you off all of the meds that they think are bad--opoids, analgesics like tylenol, benzos, etc. they give you some exercise, stretching, bio-feedback, some counceling (blah, blah, blah). part of the treatment is to flush your system and kill off the problems that you'd experience from benzo withdrawal.

i have a neuro that is a really nice guy, but thinks klonopin has really screwed up my system. for me to safely get off this stuff, they want me to do this program. it's outpatient, so i'd have to rent a hotel room for a month......hmmm, just would love that.

i know a lot of you have gone through a few different programs. part of the "influsion" is with DHE and triptan (both which can kill me...no, no for heart problems).

money shuffle or do you guys think it's worth it?

end result is to take you off some meds, then put you back on some other med like an anti-convulsant. been on just about everything, and it's failed.

i don't want to be closed minded, but this seems like a pretty expensive experiement where i think i know the outcome.

any inputs appreciated.

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Re: your thoughts, migraine treatment program.

Post  dcook60 on Thu Sep 02, 2010 9:39 am

there are some vital questions you should ask before embarking upon this program, #1 being: do they plan to take you off klonopin cold turkey? THIS would be dangerous, imho.

all benzos must be tapered very slowly, or one can have seizures or worse. many doctors don't seem to be savvy to this, and blithely put people on these drugs without mentioning the downside. sure, sometimes there is no other choice, but still, patients should be given ALL the information.

talking about "flushing your system", 17 years ago i did this, when i still had $ (lol). now i don't have any, and will have to work tiil i'l 80plus.

i went to a "fasting clinic" in northern california, run by chiropractors and overseen by a well-respected M.D. it cost thousands of dollars, and i had no drugs, and nothing by mouth except water for 18 days.

since i was skinny when i went, and lost a pound a day, i was down to 92# when done. i did it for the hope that my daily head pain would improve. well, actually, the pain went into the background while i was fasting, but didn't go away. when one fasts that long, one has barely enough energy to walk around very slowly, and rest a lot.

as soon as i began eating their raw food, the head pain came slamming back. naturally, i was hugely disappointed. and waaaaaaaay too skinny. it took me a year to re-gain the weight. i had been on the low side for my height before i went. this is just my story. everyone has their horror stories!

years before the fasting clinic, i went to a detox clinic for 5 weeks, in southern california. that, also, failed to produce any results. it involved being in and out of saunas all day. when i think of all the $ i wasted, i get sick. but it was all in the name of desperation!

i do think the things you mention: exercise, biofeedback, counseling would be quite worthless in drug-detoxing. others may disagree. that's what this forum is for; to open intelligent and civil discussions.

i've read that it can take months of tapering to get off benzos, when one has been on daily use. that doesn't sound like fun at all. but "you can't fool mother nature" can you?

one treatment i've missed is the infusions of DHE. triptans have worked for me since imitrex came on the market, so i'm grateful about that, and stickin' to those.......now maxalt and amerge, alternating. dianne
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Re: your thoughts, migraine treatment program.

Post  Anna's Mom on Thu Sep 02, 2010 9:49 am

My thoughts...weaning can be hard. Combine weaning with doing "a program" every day. Programs are strenuous. Anna did such a program years ago (in-patient), but she wasn't weaning at the same time.

How many hours per day for the program? Do you believe in the stuff they are telling you--that it can help?

Head pain is a particularly difficult beast. How many pain doctors won't even treat head pain? It messes up their success rates. There is a particular reality that comes with head pain--it is tough to beat down with preventatives.

If a program isn't in-patient, it is expensive. Meals plus hotel.

Mayo does it like this. The only patients who get by cheap are those under 18 who can stay at Ronald McDonald house with a parent. But then the parent misses work Sad

How hard do you think it will be to wean off Klonopin? That seems to be the big concern with your neuro. Can you do it on your own, with your amazing determination and smarts?

Anna has weaned off plenty of stuff at home. But for what she is facing next, I want her to do it in-patient.

Where she is going, there isn't pressure to do any big "program." If she is weaning and she is too sick, they leave her alone. Very little pressure, I hear. We need for it to be that way, for this big one.

Cheryl





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Re: your thoughts, migraine treatment program.

Post  CluelessKitty on Fri Sep 03, 2010 7:47 pm

my question is - why would this stuff be bad in the first place, Marc,
considering you had M way before all this?

Risa
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meds

Post  dawn.binks on Sat Sep 04, 2010 5:46 am

coming off as much meds as you can can only be a good thing for your body if they get you on the right ones after but having to go thru cold turky in a hotel sounds purgatory as the only place you want when you have a mig is your own bed.
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Re: your thoughts, migraine treatment program.

Post  Guest on Sat Sep 04, 2010 9:40 am

i'm really not seeing a great reason to try this plan. i think tapering off klonopin may be helpful in the long run, but.....

i have a pretty good migraine system down now. i'll find out more about the program in about a month. i'm not keen on these types of programs. due to my other problems, the alternatives are actually worse than the meds that i am on....so i'm a bit confused--as so would a few of my docs.

thanks for the input everyone! i'm pretty leary of any type of program. i don't need to learn how to deal with migraines--done a pretty good job of that already. the correct long term medico/pharmacology is the important stuff.

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Re: your thoughts, migraine treatment program.

Post  sailingmuffin on Mon Sep 06, 2010 7:40 am

Hi,

There are a couple of questions I would ask before undertaking this program.

1. What kind of program is sit? Is it a pain clinic, does it focus simply on migraine/headaches or is it another kind of program.

2. What are the benefits- besides what is listed above. What are the benefits to you? I know you will be able to get off Klonopin if needed by tapering down at home or in the program. Does the cost of trying it outweigh the benefits to you.

I have made the rounds of all the headache clinics- Diamond, MHNI, Jefferson. Diamond helped in that I learned there were other people like me and some of the meds worked for a while, biut not long term. I had a mixed experience at MHNI- though once they did facet blocks and radiofrequency, it got better. Jefferson was great in that they decided to do the stimulator.

I have also been to one pain clinic in Florida, which used occupational and physical thereapy, along with counselling, massage therapy, and biofeedback. This particular clinic focussed on getting you off opiates. All meds were oral. This particular clinic helped me the most.

Please keep us posted.

Pain free days,
sailingm

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Re: your thoughts, migraine treatment program.

Post  Richard on Mon Sep 06, 2010 10:08 am

My health problems are NOT yours ... so our experrience will be very different. Almost one year ago I decided I was taking too many medications. What happened to me is that one doctor would prescibed XXX then later prescribe YYY to deal with the side effects of XXX. Then add another ZZZ to deal with the combined side effects and on and on.

I was taking way too many meds. I slowly got off all except for pain medication to manage pain alone. And I proceeded to have a better summer this year than ever before. I am slowly sinking back into my normal rhythm for disabling episodes, but oh my how I enjoyed this summer earlier.

Marc, from your postings here, you appear to have a better grasp on your own body, your own ailments, than many. In your shoes, I would trust your feelings and instincts on the proposed treatment. You are not new to the migraine highway and know that road well. If you do not believe you need a detour at this time, I would trust that instinct.
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Re: your thoughts, migraine treatment program.

Post  Paradox on Mon Sep 06, 2010 12:27 pm

My situation was very similar to Richards. They had to get me off the meds that they had me on for all the side effects, and then for those side effects, and then for those....you get the picture.

I went cold turkey off everything in a hospital setting. I was given Xanax and Imitrex.

Now I strictly focus on pain management.

I'm a little leery about you doing it though in light of your other health issues. You have always struck me as being extremely responsible and cognizant of all aspects of your meds and that you would be more comfortable and perfectly capable of tapering.

IMHO
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Re: your thoughts, migraine treatment program.

Post  Guest on Mon Sep 06, 2010 12:43 pm

All extremely good points guys.

Getting rid of as many medications as possible is really important for all of us. Sometimes though, we're stuck because of certain problems.

Excellent points Richard. I've been through the scenario of medications that are prescribed to treat the side effects of another medication, only have another problem come up. Treating the side effects of side effects goes in a really ugly circle. Dead on correct.

Sailing, from what I've gathered, this program is more designed for those that have refractory migraines--you're stuck with them, and there's not much else to do. It teaches you to deal with them (I don't need to listen to someone to tell me that kind of stuff). This clinic's philosophy is to get rid of all narcotics and even things like Ambien and replace it with other classes of meds.

But what I'm on now, really, as it's been boiled down for years is a pretty safe and effective treatment. It's probably the best that we can do.

Ambien CR, well....maybe there's something to replace it with. Klonopin for me serves a few different areas.

As it boils down, I have POTS. My autonomic system isn't the greatest. I might have a motor neuron problem too. Klonopin helps chill my system enough that I don't get as many muscle twitches and tics, it knocks down a really irritating essential tremor that I have in my central core, and it helps keep my heart from going nuts from the vagal nerve. It helps too with some of the after-effects from my stroke.

We have to be very careful with anything that can impact memory. We know Stupi-max isn't going to work. We know a lot of the other migraine meds flat out are bad for heart patients. Right now, I see no reason why even to alter my regimen. It boils down to just another doctor's opinion.

It reminds me of a doc that just wants to add another data point or even an enrollee into their program.

With the very miniscule amount of pain meds I take, my docs are fine with what I have. Anti-seizure meds are really the only class that may be a broad spectrum that can minimize migraine and tremor, but at the end of day I still need a rescue med--and that's either a big dose of tylenol, a small dose of Dilaudid, or Baclofen.

What happens if you have surgery, and you'll need pain meds! I'm just supposed to use biofeedback to imagine away pain from shoulder surgery and PT?

This neuro would need to get a bunch of other docs to even raise their eyebrow to this--it's taken years to get a balance that is somewhat livable. You don't just throw things out just because a group that has their own special interests involved wants to poke around.

My original question was answered by the doc, so I was greatful for that.

Sailing brings up a real good point with these programs. They flush you, use IV meds, then you're back at home and bang, problem's back.

I was told my program would be customized because of my mountain of health problems. I'm really not how sure it would be, especially if this is an outpatient program.

I've picked up my exercise over the past week. I do not even have cardiac clearance to do anything more than walk and very light weights.

My heart rate gets up to about 85 and that's it, the settles down into the low 60s. Even worse, it has started to drop after exercise into the 50's. Another sign of a malfunctioning system. This brings syncope (fainting) back into play.

More I think about it, a good family doc that you can talk with and discuss ideas is worth it.

I would like to try new things, but after a while you get a chance to digest some of these ideas, and it just doesn't really make sense. Maybe it's my business brain kicking in, but heck I think it's just pure logic.

There's no clear map, and you just become someone's science project. BTDT many times.

Thanks again guys!

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Re: your thoughts, migraine treatment program.

Post  Anna's Mom on Mon Sep 06, 2010 1:15 pm

If you try stuff IV and it helps, then you need to be able to get it at home. So whatever might work IV at a "big guns" headache clinic, needs to be "acceptable" to your local docs who would do these treatments at home via infusion centers.

Anna had success with high dose IV Ketamine in Chicago, but she can only get low dose IV Ketamine at our local hospital. IV Lidocaine worked great also, but no one will do it in our state that I know of. Her GP went to bat for her to get it here at our local hospital a few years ago, but the hospital board said no. We went to five "big name places" in our state to ask for either one, and the answer was no at every place.

If she could stand to do DHE (which currently she refuses), well that's dicey also. During our last appointment with her neurosurgeon, he asked her about her success with DHE, but then he said you can't do DHE forever.

I know there are IV therapies she hasn't tried yet, and she will get that opportunity next month in-patient. If there is success with any of it, I sure hope she can get it at home.

Cheryl
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Re: your thoughts, migraine treatment program.

Post  milo on Tue Sep 07, 2010 11:53 am

For withdrawal from benzodiazapines:

an example of typical practice for a short tapering protocol:

if the patient is taking more then one type of benzo, convert to a single agent

substitute any short-acting benzo with the equivalent dose of diazapine

reduce dose by 25% every 1-2 weeks depending on symptoms until at 50% of original dose

reduce dose by 12.5% every 4-7 days until total abstinence

Going faster then this in a non-supervised setting is not recommended and the longer a person has been on the benzo the more gradual the taper should be.
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Re: your thoughts, migraine treatment program.

Post  Guest on Tue Sep 07, 2010 8:21 pm

i had a talk with one of the docs that say klonopin is ok.

his opinion was no way you're going to stop it because someone new pops in and says they don't like them and you should stop.

major resistance for a president of a department.

even further stopping of all pain medications is rediculous--got referred to a neurosurgeon for the tumor growing on my pituitary stalk.....oh yeah, they'd pop that out without the use of pain meds and other "chill" medications. i'm sure biofeedback would take care of that pain. affraid

i'm not against other methods, but when the overall picture gets trashed because of a program's methodology, it's wonky.

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Re: your thoughts, migraine treatment program.

Post  Paradox on Tue Sep 07, 2010 8:53 pm

Wow.....Let's get that neuro to volunteer for good old fashioned trepanning. I'm sure that would make one quit worrying the migraine pain!
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Re: your thoughts, migraine treatment program.

Post  02R96 on Tue Sep 07, 2010 9:56 pm

This sounds like the same or similar type of program I went through. I can sum it up my experience like this...

1 - All drugs are bad.
2 - All pain is caused by a physical problem.
3 - Pain can be resolved by:
a - Ween off of all narcotics and analgesics, replace with Benzo's. scratch
b - Apply physical therapy to problem areas. Neutral
c - Use Biofeedback to relieve pain. Laughing

The program was two to three day's per week for a total of four months. After completing the program (and paying $1200.00 in out of pocket expenses), I was no better off then when I started. When I spoke to the doctor and told him the program was not working, he got angry and told me I was not doing enough to help myself. Thanks, I feel better now...

So for me it was a complete failure, and a waste of time & money.
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Re: your thoughts, migraine treatment program.

Post  milo on Wed Sep 08, 2010 9:45 am

Dan, They seriously took you off pain meds and then on to benzos?????????? That is wrong in so many ways!!!!!
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Re: your thoughts, migraine treatment program.

Post  02R96 on Wed Sep 08, 2010 9:55 am

True story. It was a real WTF moment when he handed me the script. Suspect
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