What to do when you have more than one chronic illness?

By SusieB Saturday, December 31, 2011

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I have wanted to go to a migraine specialist to get a handle on my chronic headaches and migraine attacks, but am reluctant to leave the neurologist I see. I have TMD and fibromyalgia, so these conditions add to the problem. My neurologist however seems to mostly focus on the headaches and minimally on TMD and fibromyalgia anyway. She tells me to exercise more and to keep to a regular sleep schedule, etc., for the fibro.

I'm a "mixed bag" as far as pain is concerned, with my neck and jaw contributing to the majority of head-bangers. I'm just not sure if I need to see a migraine specialist separate from the neurologist. I'm not having relief from the 2-3 migraine attacks a week. My neurologist thinks it's just overuse of analgesics and evidently not TMD and fibromyalgia playing a role. I'm starting to "frustrate" her as she put it. Hey, I'm frustrated, too!

I've been "dumped"

Comments (21) | Add comment

Teri Robert, Health Guide

1/ 1/12 1:56pm

Susie,

You said your neurologist seems to think it's "overuse of analgesics." How many days a week to do you take something for a Migraine attack? How many additional days a week do you take something for pain from your fibromyalgia or TMD? If it's more than two or three days a week total, even if some days aren't for Migraine, medication overuse headache could be playing a role. For more information, please review Medication Overuse Headache - When the Remedy Backfires.

If I were in your place, and my doctor couldn't help me reduce my Migraines past where you are, I would definitely seek care with a Migraine specialists. A Migraine specialist might or might not be able or willing to treat you for TMD or fibromyalgia, but honestly, when we have multiple medical issues, it's not realistic to think we'll be able to treat for all of them with the same doctor. I understand that complicates things. I'm in that situation myself. What I've found is that it works better for me to see whatever specialists I need to see and make sure that they send reports to each other and consult each other when treatment overlaps or could affect recommended treatment.

Keep us posted?

Teri

Melanie Jane

1/ 2/12 2:56pm

Hi Susie,

I'm sorry to hear all the frustrations you are experiencing right now. I don't know if this information will be helpful to you or not, but I do know there are some migraine specialists out there who are Doctors of Dental Medicine as well. (They are DMDs rather than MDs.) Generally they have completed a post graduate speciality in "orofacial pain management" and treat the full spectrum of facial pain disorders. It might be a way for you to broaden your search beyond neurologists but also hone in on the issues of most concern to you. Just a thought.

Nancy Harris Bonk, Health Guide

1/ 2/12 4:06pm

Hi Susie,

I understand your concern about the multiple chronic issue thing. It seems really hard to get a doctor to talk about everything with us, and I guess that is asking too much of them anyway. Doctors today only have a certain amount of time to see each patient due to health care and insurance constraints. I think we as patients need to take the ball and run with it if we have an inkling that we may need to look further for our care. There is absolutley nothing wrong with a second or third opinion.

I know you probably don't want to hear about MOH, but some of us may have extra sensitive brains so to speak and more easily be put into an MOH situation that others. Some folks can take their meds 2-3 days a week with no problems, but others, like me cannot take anything more than 2 days a week or I will definitely have an MOH issue. Even cutting out the 1.5 cups of coffee each morning and limiting my caffeine consumption seems to help a bit. Just some thoughts...

Anyhoo,

Happy New Year!

SusieB

1/ 2/12 8:52pm

Thanks, all. I probably am in a MOH problem since I take Excedrin or Aleve whether it's a headache it terrible neck and facial pain. I put Mobic in my pill case, so wish me luck on stopping all analgesics. I do use Zanaflex, which helps, but makes me very tired.

I did see a TMJ specialist, btw, but that was for a splint and now I have braces, so I don't have a splint. He doesn't treat pain though. I see a pain management specialist, but he, too, is limited in what he offers. You're right; I may need to branch out more. I had thought I should see a rheumatologist since I have heard that those doctors can help people with fibromyalgia.

Thank you for the feedback. I will keep in touch!

Nancy Harris Bonk, Health Guide

1/ 3/12 3:13pm

UGH! MOH stinks, big!

The best approach to MOH is to ask your doctor for help. If you've been taking those for a long time it would be better if your doctor may be able to prescribe antinausea medications, muscle relaxants, or other types of medication that won't really stop your Migraines or headaches, but can at least help you get through withdrawing from them. Even though aspirin can cause MOH, there's new research that IV aspirin may help stop MOH. You can read about that in IV Aspirin for Medication Overuse Headache.

There really isn't an easy solution to this, as much as I wish there was.

Keep us posted.

SusieB

1/ 5/12 10:26pm

Thanks for this article. I didn't know there was an inpatient way to go about taking care of me as I go through this period without Excedrin/analgesics.

SusieB

1/ 5/12 10:31pm

Thank you for this article about aspirin IV. I had not heard of any inpatient treatment for MOH. I appreciate the information!

SusieB

1/ 5/12 10:33pm

Sorry! I kept getting error statements. I wish I could delete two.

Nancy Harris Bonk, Health Guide

1/12/12 4:11pm

No problem, Susie. I'll go take care of that double answer now.

Susan

1/ 5/12 11:46am

What is wrong with your neck? I was having migraines forever; I am 62. Just last year I had it because I actually started feeling pain in my neck. I had xrays and it turns out I have arthritis up and down both sides of my neck! and my lower back. I have been taking a joint supplement that has an anti-inflammatory "spice" in it since I found out and low and behold the migraines have eased up tremendously. It appears that pain in other areas of your body can trigger the migraines.

Do extensive research on supplements for your conditions and you may be very surprised by the results. Good luck!

SusieB

1/ 5/12 10:36pm

What kind of joint supplement do you take? I have fibromyalgia, and in 2008 timeframe had an MRI of my head and neck. I have one herniated disc and some normal degeneration, the doctor told me. His treatment was physical therapy, which I've been doing for some time. It's probably the only treatment that keeps me sane. I would love to find a supplement though vs. taking another medication on top of the ones I take now.

Susan

1/ 5/12 11:17pm

Easy as Pie! Andrew Lessman has his own website but I shop for his products on HSN. I take 23 supplements a day. 6 of them go down very easy (joints) with a glass of water, and then there's a few calcium, magnesium and D3 and Biotin (my hair and nails grow super fast) and alpa Lipoic, B6, B12, CoQ10, but my best is his Maximum Joint Effort; the Complete Joint Effort is the first one I tried which was a 60 day supply. After a month or so, I couldn't believe how the pain eased and the migraines, where did they go? I have suffered for over 20 years..So after I finished the 2 months of the Complete, I ordered the Maximum Joint Effort b/c it also contains an anti-inflammatory spice from India, which I read about all over the internet. Everyone is different I know, but I am so delighted; you may be too. Also, I wish I would have taken care of my eyes with his supplements. A few days ago something blew into my eye in the yard and 2 days later I was in agony b/c it scratched my cornea and iris. I started wearing glasses at 8 and my myopia got so progressively bad and I had cataracts at 50. Wore sunglasses my whole life and never did any of the things they talk about to bring on the cataracts. I more than likely needed a supplement which I just ordered from HSN and Andrew called Maximum Eye Support. I am also adding Pine Bark, which supports bones and eyes.

I was told today by the optomologist that with the injury she is treating, my pressure was a little high b/c I have some kind of glacoma syndrome, which I have known about. So I'm starting the supplemens before I go back to her. I have been like this since the 80's with vitamins and all that, and I am a true believer in alternative and progressive methods of healing and food therapy too! Again, Good Luck to you and I'm here for you.

lcfrey

1/ 5/12 3:16pm

I too have other illnesses, most notably Ankylosing Spondilytis (aren't you glad I taught you that word?) I go to 4 doctors frequently and 4 others on occassion. I love to hear their various points of view, but mainly go along with my rheumatologist. I strongly suggest you try other specialists. I have "fired" 3 doctors in the last 2 years. I like everyone I see now and feel that I'm getting good care, but won't hesitate to change if I lose the trust.

SusieB

1/ 5/12 10:46pm

I'm so sorry. I sure have heard of that one and imagine it's a challenge for you as well to find the care you need. I'm so glad you told me that you've seen several doctors. I'm not alone! A part of me is a people-pleaser and one who also doesn't like change, so changing doctors usually comes after a lot of tears and frustration. I've now seen 5 neurologists. (Actually, 6 including the one at Cleveland Clinic. I couldn't afford their headache program -- so wish it was inpatient, not outpatient.) I have not seen a rheumatologist and the idea to go to one hadn't come up until I applied for SSDI and saw an article about who people with fibromyalgia generally see for treatment. I did look up someone in my plan, but think I might ask my PCP who he would recommend.

kjc

1/ 6/12 11:31am

I have migraines, fibromyalgia and Epilepsy, restless leg syndrome. I understand

how frustrasted you feel. My Neurologist is excellent but I have to drive an hour

every 2 months for refills on my medications. My medications make me tired

and I have no sex drive. I also live with chronic neck pain from 2 car accidents.

All my Neurologist seems concerned about is my seizures, and migraines and not a whole lot about my any of my other problems he tells me to see my personal

doctor. I have thought about seeing my personal physician about all my disorders

because my neurologist sees so many patients I have to remind him of everything

we talked about the last time. My general doctor is only 15 minutes away and

very competent.

Kurt

1/ 7/12 9:08am

I am a life long asthmatic. But the Navy Reserve took me once I got active in running sports in high school. The Active service branches would not take me. I trained with the Active Duty Navy and did everthing they did. I was a BU3 rate in carpentry for 8 years.

I started with the GERD in 1971 but it was not diagnosed until the 1990's. Last year they found I have Celiac's Disease and now Barretts Esophagus. My migraine issues kicked in following cerebral hemorrhage in December 2001.

I also have other medical maladies.

I frequented hospitals until I was 9 years old with bouts of asthma related pneumonia 2 or 3 times a year in whole bed oxygen tents for a week or two per visit, in south Florida in the 1950s.

I know bad doctors when I cross their paths. It usually takes me just a couple visits to realize this. I get away from them.

Currently my GP treats me for most of my problems AFTER I visited the various specialists and did the various procedures. I am getting to the age where my doctors are mostly younger than me. A few specialists I go to them instead of my GP.

If the doctors are not taking care of your problem, try to work it out with your insurance for a second opinion. The 7 neurologists I have tried since 2001, each a separate group, not related to each other, nobody dealt with my migraine issues very well, and I took so much Lortab I developed an allergy to it and no more opiates for me! My current GP/MD has done more for my migraine issues than all 7 neurologists did.

I have esophageal spasm related to GERD and last year started taking Librax generic. I do not get the 20 minute pre-migraine auras anymore as well as the Librax helps other medicine side effects for me. I take 2 capsules morning and 2 at night. If I stop it, the auras return.

I also deal with chronic pain from years of hard work. I tried Cymbalta 30mg while taking the Librax. 3 days into the medicine I got a 4 hour steady aura which later became full blown migraine. I quit taking the Cymbalta. The Cymbalta also caused me nausea which is related to migraine. I told my GP doc, I will live with the pain, grin and bear it.

I think you should try a neurologist that specializes in MIGRAINE. Change is sometimes difficult to do, especially if depression gets in the way. Been there!

Sad to say, if your headaches are rebound as suggested. You probably need to stop ALL medicines and clean out your system, but only do it under a doctor's care. I have done that, too---not fun. I would think, if you go to a headache clinic, they may do something similar to establish a base-line to work from.

Take care,

Kurt

Sorry if typos...

Kurt

1/ 7/12 9:34am

Read a book on the principles of ZEN.

Basically it is placing your mind in another place and forgetting the pain. Distance runners do it and I used to be one. You, too, have probably experienced it when reading a book you may get so involved you can tune out all around you. Or taking final exams in college. I do computer stuff and hobby/house fix up that takes a lot of deep thinking and I can easily shut the pain off.

Might not be so easy with a throbbing migraine. But I recovered painful hemorroid surgery in 1995 without pain pills becaue I did not want to get constipated. I had about an inch of my anus removed. I stared at a point on the ceiling and tuned out the world, usually going to sleep. It was great until I woke up again.

Kurt

"Zen Training Methods and Philosophy" by Katsuki Sekida (Weatherhill 1975)

I bet Amazon.com may have it, even a used copy.

SusieB

1/ 7/12 8:58pm

I am such a people pleaser that I am still learning that I'm in control of my health care, especially when I go to people who I know have several years of education and experience. The fact that I'm not alone in changing doctors several times makes me feel less like I'm making the wrong decision and more like I am taking control. I, too, have a fall-back in my family doctor. When a specialist and I are needing to part ways, I go to him to tell him what's going on. (I was diagnosed with interstitial cystitis before my migraine attacks began to become more frequent, so do know that not every doctor knows about that disorder and it's treatment.) The out of pocket for that headache program at Cleveland Clinic was co-pays to various people - since there's more than one provider working in the clinic - and hotel accommodations, food, etc. It started becoming in short work a price tag my husband and I couldn't afford really quickly. I will ask my neurologist on Tuesday whether there is something in-patient I can do to get out of this MOH cycle though.

Kurt

1/ 8/12 2:18am

Yes, an in-hospital stay, where everything done is covered by the in-hospital side of your insurance plan, if you have it, will cover all expenses, minus the co-pay. I do not use my GP/MD's local hospital in town, but a different one 20 miles away where all in-hospital procedures, tests, pathology lab reports, etc. are covered.

Downside to a hospital stay, if I play their game, their way, I tend not to be much control of my life so much. One time, me suffering heat exhaustion on a cool day, out on a 10K training run. I got the migraine at about 4 miles but finished the run. (Yeah, I should have stopped, but runner's ignore the pain. I was age 49 at the time. I walked into the ER waiting room and passed out. No waiting for me! My wife said the response was immediate and many people were working on me---in this case I had NO control of my life and it was the best place to be. (They said years of running is why I survived it, but I had to quit the running and now only walk.)

I once had an aura following a MRI angiogram of my head, in-hospital, called a MRA. I was in the wheelchair afterwards when the aura hit. I had no Fioricet to take. 2 hours later they give me the Fioicet while in full blown migraine. It was too late then, to take the medicine and I had to ride it out. The IV dye has caused this two separate times. I was pissed at my nurse, but she had to play the hospital's game, too.

As an outpatient I always have meds on my person, if aura, I take the meds---I don't need a doctor's permission as is necessary playing the in-hospital games. That hospital is my current GP/doctor's hospital which I no longer use, except if emergency.

The other hospital's hospitalist GPs takes care of me and comminicates with my GP.

Food for thought. As always, get a doctor's orders or advice. I am just relaying my own experience as an example.

Kurt

piper

1/ 7/12 7:02pm

Hi Susie, I have fibro, chronic fatigue, rls and migraine with aura among other things. I have been taking amitriptyene every night and it has helped with the pain from fibro as well as lowering the amount of migraines I experience. I only take pain meds for the 2 or 3 migraines I have a month now. Have you tried this drug? I also take atenolol daily and I'm so thankful that I don't have weekly migraines now. There are so many preventatives to try.

SusieB

1/ 7/12 9:14pm

I'm glad you've found the best preventatives to treat migraine. I'm pretty sensitive to medications - one doctor blamed my fair skin and red in my hair. Hey, it might be my Scottish heritage, who knows, but I do tend to get side effects that are pretty unbearable. I did try amitripyline first and because I have chronically dry eyes anyway the symptoms there became so severe I stopped. I'm trying nortriptyline, but so far only at the 10 mg. level because anything higher make my feel like it's on fire. I take lisinopril, a beta blocker, and have had better luck with side effects, but while it takes care of my high blood pressure, it hasn't had an effect on migraine attacks unfortunately. I would love to have had better success with amitriptyline because it's also useful in treating IC. I also wish Topamax worked w/o side effects because I was so close there, but with the burning feet feeling and then these episodes where I felt so not like myself I had to titrate off of it. I am hopeful though just because I have read about so many preventative meds out there.

What to do when you have more than one chronic illness?

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