What do I do now - need some advise!

I’m backed into a corner and I’m hoping I can get some objective advise from my fellow migrainers. First some background. I’ve been to seven MD’s, two Pain Clinics, a Chiropractor, and (of course) my PCP. Right now I’m unemployed. Money is tight, but we’re getting by.

Last week I went to another pain clinic for an evaluation. I was diagnosed me with Migraine without aura, chronic daily headaches and Cervicalgia (which is neck pain occurring from spinal or muscle issues). They think they can help me by putting me through a 12 week, rehabilitation program. Here’s the rub…

My out-of–pocket expenses will be around $1200.00. That’s a lot of money even if I was working. Scheduling is also an issue. Late appointments will be very hard to schedule, so that means I have a better chance of getting in during morning hours. OK, here’s the problem…

Being unemployed, means money is tight. My wife thinks I should do what ever it takes to resolve my constant headaches. We have a small savings, and she suggested taking the money from there as a necessity. I’m against it, as I think we need to hang on to money as long as we can.

There is a company hiring production workers for 2nd and 3rd shift. This sounds great from a scheduling standpoint, but what happens if they work me over, and it triggers a migraine that needs Norco and a dark room to knock it down. I won’t be in a safe state to go to work, and as a new worker I’m sure taking sick day’s right away won’t look good.

My career field is in computers; I am a Network Administrator. If I start a new job, I don’t think I can reasonably start taking time off for my treatments, as the hours will be first shift (8-5). There is a very good job opening I’m going to apply for, however at my last job I could barely make a week without missing time with my headaches becoming so frequent and intense. But that job was turning into a pressure cooker (another story) We question if I could even hold down a 40-hour a week job (minimum in that field).

My headaches are stressing our marriage but she does acknowledge I cannot control them. I need to get them resolved (as we all do); however we are of two different mindsets.

I’m thinking of trying to land a job in my field, establish myself, and then make arrangements for the treatment program. As for now, stay on my current track of pain control only. Keep in mind, I’m been taking various forms of Vicodin and other painkillers for years now trying to manage my pain.

My wife thinks I should jump in ASAP, find the money to pay for it however possible, and work out the job and money issues as they come up.

My “nightmare” concern is what if I go through this expensive treatment, and I’m no better than when I started and I’m also out $1200.00. This is a real concern for me as I’ve been to so many places who said they could help me without any real results.

See, it’s complicated. Any ideas?

oi....that is a tough one. I think I'm with your wife on this one...but I suppose it depends how much of a safety net that 1200.00 bucks is for you.

If you find the perfect job but you headaches screw it up, you will be no further ahead.

If you get the head fixed then land the job, you have a better chance that you keep the job.

rock, meet hardplace.

I'm with you on this one Dan. I have heard too many stories of broken promises and failed stays at headache clinics. There is no cure. Bottom line. We may get periods of relief, but no guaranteed cure. They can not guarantee that you will be pain free and ready to hold down a job after this.

Maybe I'm overly sceptical, but there are too many of us STILL suffering after so much dumped money. Pharmaceutical companies and docs must love migraneurs. Keep dumpin our cash to get some relief.. Yet most of us continue the suffering

I agree with you, Dan, and with Jessica. Especially after all the tried and failed treatments we've all been through.

However, could the administrators of the 12-week program work with you to bring down the $1200 out-of-pocket? Anything to take some of the stress away.

Please know you're in my prayers, Dan. It's so hard to stay optimistic after all the doctors, treatments, meds, etc., that we've been through. Hang in there.

Becky

Logic would say, go get your head fixed first, but, no cure has been declared worldwide yet. Lots of trials, but no cures.

I have forged a career and schooling while being a single mother while being on drugs, experiments and horrible pain. Go for the dream job and take it one day at a time. Adapt the tricks to stay in the game. You've come this far and will continue to do so.

Of course I would love to have you take the time to try it, but I'd hate to see a great opportunity fall out of your grasp on a maybe. Besides, this treatment will always be there.

My opinion.

Angela

Hi,
I agree with you wife and I think that she can see the situation more clearly right now as you are too stressed by you pain to evaluate things objectively.

Remind that health comes first. Without health everything becomes harder...

Take care

I'm on your side on this one. $1,200 would be nothing if it was guaranteed to work but when most of us have been trying different options for years and still have no answers, there is a good chance you will be out your $1,200 and no better off. If at all possible, I would try to land a job with good insurance, and then go for it.

Go to some app. see what they want to do . you can do it at home maybe. chronic daily/ M is neurological so I would be doubtful of alot of benefit.

however I believe some headaches are spinal neck related. and a neuro Dr. I had insisted I losen neck muscles with moist heat, maybe causing tension headache leading to M. he was a 2 x week sufferer of M. his wife also.

hope you find relief soon . I suffer 6 years and doing some better 200 mg 5-htp daily and script clonodine .1mg 3 x day

What will they do for you--to you, in the pain program?

Cheryl

This is copied exactly from the paper work I received...

Treatment will take place over a 12 week period of time.

Weekly appointments will take place with the treating physician.

Physical therapy treatment is to include manual therapy, instruction in a home exercise program and education regarding anatomy, posture, body mechanic, flare up management, and pacing.

Psychology treatment will include all or some of the following: Acceptance and commitment therapy to reduce emotional distress, stress management, enhancement of instruction and compliance, goal setting for rehabilitation, education regarding pain coping strategies, and
relaxation training and biofeedback.

The thing is I've been through the home exercise programs before, and all they do is aggravate or trigger migraines. Has anyone had Biofeedback? I don't know what that is.

Since you're in Michigan, have you ever thought about going to MHNI in Ann Arbor? It is a well known headache clinic where you can get inpatient care (you can google it). They try lots of IV protocols and procedures geared to head pain. Some people love them, and some people hate them. One thing people complain about is their forced psychological care. But I do think trying the IV meds they offer could be worthwhile.

To me, one of the difficulties of such headache clinics is switching from IV meds to oral meds. You can have something work via IV that just isn't going to work in oral form. So you can leave the place about as bad as when you came. This has been my daughter's experience.

My daughter did an in-patient chronic pain program for seventeen days, nine years ago. Our insurance paid for all of it. It was helpful, but so many of the patients in the program had back and neck pain which is an entirely different animal than head pain. Yes, stretching and moving can be very helpful for back pain. But head pain can be entirely unrelated to neck issues. It depends on the person.

Head pain is so incredibly resistant to treatment. I don't think the average pain program has a lot of success in treating head pain because the causes of head pain are so poorly understood.

If you had a spinal fluid leak HA, being upright going to classes and doing inappropriate physical therapy would be entirely the wrong treatment. Just as an example. Nothing much helps a chronic spinal fluid leak HA except for finding and fixing the leak(s).

We have taken our daughter to Mayo Clinic. They really push their chronic pain program on her. It is mega thousands of dollars. Three to four weeks long. You have to stay in a hotel and pay for all your meals while you do the program. Classes all day long. She is really too sick to go to classes. She can't be upright like that. But they don't consider her reality, and they say this is the only thing that is left for her. I don't agree, and her home health nurse who sees her weekly thinks it is ridiculous, due to her poor physical condition. She needs to be able to sleep at night, stay awake during the day, and be able to be upright for a long periods of time to do such a demanding program.

So those are just my thoughts. Maybe look into MHNI, if you haven't already, and compare it against the program you are considering?

Cheryl

after reading the program, I say SAVE YOUR MONEY for now . those may get some relief but nothing new in any of it.

someone else posted Bio is stress relaxation exercise and similar things ???

I've done the bio feedback and deep relaxation stuff. Did it religiously, was able to obtain almost complete relaxation and it had almost no impact on my headaches. I would save the time and money, personally.

Have you tried triptans as opposed to narcotics for migraine abortion? They have much less side effects and are not habit forming. They do cause MOH but so do narcotics, probably more so. Have you tried all the preventatives used in migraine. There are so many these days, most of them are off label and you never know till you try. I refused Topamax for 5 years and only started it as a last resort and have had the best 6 weeks migraine wise I can remember in a long time. It may not last but I'll take any form of relief while it lasts.

Reading what you've attached, I'd change my answer to being back on your side. I agree with whoever said to find a good job with benefits then seek out that same treatment.

Nothing new or exciting about what they are offering.

I say go for the job.

I tried bio-feedback and imaging...and perhaps I'm too much of a skeptic but I just lay there on my little sunny sand beach, thinking "this is so much baloney!". I'm sure it would help more if my attitude was different.

Charlotte

I've found the biofeedback and imaging don't help much when you're suffering from a migraine. The throbbing pain overrules trying to think yourself into your "special place". It might work better for someone who has episodic migraines but not for chronic daily migraines.

Becky

Here's a brief quote from the Mayo Clinic...

Biofeedback is a type of complementary and alternative medicine called mind-body therapy. It's designed to enable you — in mind-over-matter fashion — to use your thoughts and will to control your body. Biofeedback is based on the idea, confirmed by scientific studies, that people have the innate potential to influence with their minds many of the automatic, involuntary functions of their bodies.

I am a MAJOR skeptic on these kind of mind-over-matter type treatments; sounds like wish-full thinking. When my head is throbbing, it's almost impossible to concentrate on anything else.

The more I read through the paper work, the more it sounds like an expensive program (which I've gone through with other doctors) that will give me only temporary relief. Which is the same as I get now with my pain management program.