Help with Refractory Migraines

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Help with Refractory Migraines

Post  sjmnhall on Thu Jun 19, 2014 11:53 am

My 17 yr old has had migraines for 5 years and it was totally under control using amitriptyline 40mg daily. In November her migraines evolved and in April we ended up in the hospital for a week after having a constant migraine for 2 weeks. They tried the usual cocktails, DHE, and nothing broke it. She started Neurontin and it brought the pain level down to a 5 but horrible side effects. Since then we have tried Zonegran- no help, she is already on 3 blood pressure meds (high pain levels are keeping bp up) and they haven't helped.

We know her triggers, she does bio feedback and yoga both. Nothing helps.

Her neurologist just took her off Amitriptyline, Neurontin and Zonegran and we are now going to try a combo of Vistaril and Robaxin 3x's a day.

Has anyone had a similar problem, any success with these meds? We need to find something to break this as well as prevent it. Any advice would be greatly appreciated.

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Re: Help with Refractory Migraines

Post  Platypus on Thu Jun 19, 2014 2:57 pm

Hi, I am really sorry to hear your daughter is enduring so much suffering w/ this terrible disease. Everyone here knows what it's like.

It's not unusual for medicines to stop working after some amount of time -- weeks, months, years, like Amitriptyline did for her. There's a name for that effect, I forget what it is, but I've had it happen w/ several medicines over the years and it's always deeply distressing.

As you've already seen, headache medicine is, sadly, a trial and error process.

Since she responded to Neurontin, there is a good chance she would respond to Topamax and/or Depakote. These latter two fare far better in clinical trials than Neurontin -- she might do even better. The downside is many patients do struggle w/ side-effects on these as well. Of the two, Topamax tends to be more easily tolerated, especially over time.

Has she tried any of the triptans e.g. Imitrex?

Platy
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Re: Help with Refractory Migraines

Post  micheletroyer on Thu Jun 19, 2014 3:24 pm

Migraines can make life very.......interesting.  Yesterday, I had my first pain free day since Thanksgiving.  My NP put me on a low dose of Amitriptyline, which helped my fibromyalgia, but not the migraines.  I cannot take triptans or DHE due to the type of migraine I get (hemiplegic).  Neurontin also did nothing for my headaches.  I am currently on Vistaril to help manage my anxiety, which it does quite well.  Also, I just increased my dose of Savella to 50 mg twice daily.  This is a med originally intended to be an antidepressant (SNRI), but they found out that it's really good for fibromyalgia, the reason I was initially put on the medication.  Savella does help, but it isn't a cure.  My neuro said that my last resort would be Botox injections.  I have had one round so far, and am due for another in July.  

Currently, other than going to my NP for Demerol, Phenergan, Toradol, and Dexamethasone, I do not get much meaningful relief from my migraines.  I usually go in once or twice a week, although I'm trying to keep it to only once, because I got "the lecture" last Monday when I went in.  As far as at home treatments, I take Phenergan, Benadryl, Ibuprofen and Magnesium every 6 hours, which at least takes the edge off.  I also practice biofeedback and general deep breathing and meditation.  In the mail today, I got an Enduracool Headband.  You can get them at Lowe's or on hsn.com.  I haven't tried it yet, but am about to, when I sign off here.  Also, I usually have an ice pack or bag of frozen peas on my head.

I don't know where you live, but I saw Dr. Carol Foster in AZ, and she totally redid my diet, got me doing light exercise, such as strolling along the street for 30 minutes a day.  She also advocates spending 30 minutes each day practicing relaxation with eyes closed the whole time.  You can listen to music or TV, or just veg, whatever floats your boat.  Apparently, this helps to calm the nerves in the brain which cause migraine.  She has a book out, but I don't know the name of it.  It details her treatment protocols (including all the things you have to remove from your diet), and could be a source of information for you.  I'm sure shes on Amazon. I had to quit seeing her because I couldn't afford her, nor the gas it took to get from Tucson to Phoenix once a month. She did put me on indomethicin, which killed the migraines, but also killed my stomach with ulcers.

I'm assuming your daughter is still in high school, based on her age.  This is very difficult to do....I got my college degree through accommodations such as getting any printed material on green paper, having the professors videotape their lectures, taking tests in the Student Support Center, and one professor, who I am friends with to this day, personally came to my apartment and spoon fed me the curriculum.  I experienced frustration, irritation and resentment from a fair number of my classmates, because they thought I shouldn't get "special treatment".  In the end, I did graduate in 2006, and worked for about a year before applying for SSDI.  I had been in the hospital for migraines 9 times that year, where they just drugged me out of my mind until my left side decided to not be paralyzed anymore, usually about a week.  I had to move back in with my parents for a year because my funds ran out.  I finally got disability in 2012, and have lived independently since then.  Work is out of the question.

I hope my rambling gives you something to hang onto, and best wishes to your daughter for pain free days (or at least tolerable pain).

Michele
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Re: Help with Refractory Migraines

Post  Seaine on Thu Jun 19, 2014 4:52 pm

I second the triptan question; it's the only medicine that stops my migraines once they have started.

You say you know her triggers, but it's actually pretty unlikely that you know them all. If all triggers are avoided and she's getting daily or contant migraines, there's probably something more to discover. I've had migraines since I was 12 and they became daily around the age of 15 or 16. Only one year ago I discovered that artificial food dyes in my foods, drinks, and medications was making my migraines significantly worse! Imagine all the pain I could have avoided if I discovered that 10 years ago. I recommend looking into food triggers which most if not all of neurologists tend to overlook.
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Re: Help with Refractory Migraines

Post  sjmnhall on Thu Jun 19, 2014 6:10 pm

She was using Maxalt before this all happened and it worked wonderful when she did get a migraine. Since this all started in November, Maxalt and imatrex pills do not work at all. We did use an imatrex injection and it worked great, but knocked her out cold within about a minute.

They just prescribed Axert, which we have not tried yet as they have not been above a 5.

She did have a mono test come back that was a false possitive, so they are running a slew of tests to see if there may be something else going on making it so hard to get these under control.

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Re: Help with Refractory Migraines

Post  sjmnhall on Thu Jun 19, 2014 6:14 pm

I forgot to add that she just finished up her freshman year in college. We are in the Atlanta Metro area and sadly there are no certified migraine specialists. Most of the top neuro practices are not taking new patients. Since she is 18 she had to switch to an adult doctor. After spending a week in Children's Hospital(you can go until your 21) they referred us to the Emory Neuro Clinic. We are currently seeing a NP as NO doctors had opening until 2015!

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Re: Help with Refractory Migraines

Post  Platypus on Thu Jun 19, 2014 9:11 pm

Well if injectable Imitrex worked, that is a tool she can use. There's no question the injections are more powerful than the pills. It may have konked her out, but when you have a high-level migraine, you're generally down for the count anyway. She could experiment w/ a lower dose. Also the sedation may have been a one time reaction. In any case, I actually consider sedation a good quality in a migraine abortive. It's also nice if you have a secondary abortive to take for mid-level migraines. Maybe the Axert.
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Re: Help with Refractory Migraines

Post  Seaine on Fri Jun 20, 2014 4:25 am

sjmnhall wrote:She was using Maxalt before this all happened and it worked wonderful when she did get a migraine. Since this all started in November, Maxalt and imatrex pills do not work at all. We did use an imatrex injection and it worked great, but knocked her out cold within about a minute.

That sounds familiar to me; I used to have the same problem before I stopped eating artificial food dyes - the triptans did not work. Now that I don't eat/drink food coloring and don't take meds that have it, the Imitrex works like magic. Such a difference!
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Re: Help with Refractory Migraines

Post  Sara79 on Fri Jun 20, 2014 8:19 am

The word Platypus was looking for...tolerance. Used in a relevant sentence: your daughter has built up a tolerance to the previous BP meds, and you're now looking for a new combo that works.

Combo of my education degree and my current med field employment.

If the Axert doesn't help, there's also Frova, Relpax, and Amerge (I think it's different from Axert, but may not be), they are all Triptans. If DHE has worked in the past, there is Caffergot, which is in the same med family, but has caffeine, which helped me not get as drowsy.

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Re: Help with Refractory Migraines

Post  sjmnhall on Fri Jun 20, 2014 8:50 am

Thanks Seaine - I am going to look into the dye stuff.

Sara 79 - The DHE they tried in the hospital and she had a horrible cardiac reaction. So, not sure if it would have worked or not but not an option for her.

Here issue is they can't get them to break at all. She has had this constant since April. It is usually between a 2-4 as of the past month but she is doing not much at all. Had to quit her pt job, can't really use the computer and is having trouble finishing her college classes. So the big issue is how do we break it and then what do we use for preventative.

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Re: Help with Refractory Migraines

Post  micheletroyer on Fri Jun 20, 2014 9:52 am

Migraines suck.  I would highly recommend your daughter visit the Student Support Services or ADA office at her school.  They will be able to help her define "reasonable accommodations".  Some that I already mentioned that helped me is to get printed material on green (or whatever color works best for her) paper.  This eliminates the stark black on white and resulting words that swim on the page.  For textbooks, you can get a clear report cover in the color that works best and just lay it over the page.  It made so much of a difference for me.  She can also take her exams at the Student Support Center, which decreased stress levels for me.  The professor just needs to know about the accommodations, and they will send the test right over.  I usually took mine at the same time the rest of the class did, just in the private, low-lit comfort of a cubicle (on green paper).

Another channel I took was getting a pet prescription for an "emotional support" animal.  Mine was a bird, and he could fly in airplanes in the cabin (contained in his travel cage, of course), go to classes with me.  As long as your daughter can take care of her pet, or make arrangements to have it cared for, the animal can live in the dorm and they can't charge you a pet deposit or refuse to let the animal live there. The airlines have even had miniature horses in the cabin, so not much is off limits. Just a note, always call the airline before each trip to confirm you will have an emotional support animal on board, and carry the pet prescription with you. I did just that, and won a fight with a mean flight attendant who wanted the bird in cargo.

There was an empty classroom that was set up for pediatric Occupational Therapy, that had soft mats and plenty of pillows.  I found that resting between classes helped enormously.

Pursuing these options sounds like a lot of work, but you really only need a note from your daughter's NP or MD that states the disability and the recommended accommodations -- the the Americans with Disabilities Act kicks in.  You do not have to be on SSDI to qualify for this.  Another route is to go through your state's Vocational Rehab program.  I did not personally do this, but a few others in my class did, and Voc Rehab paid for some of their tuition, meal tickets, gas for the car, etc.

I know you are wanting advice on how to break this migraine cycle, and I'm afraid I don't have any.  Everyone responds differently at different times.  Accommodations can be a valuable tool in getting your daughter through college.

One thing I tried as a preventative is Migravent.  You can order it online.  It is an herbal preventative which contains butterburr (a substance which has shown to be useful in studies).  I used it for three years until my funds ran out, then couldn't afford it anymore.  I think it was about $100 for a 3 month supply.  I had pretty decent results with it -- recommended by my neurologist in Tucson.

Hopefully you can find something useful in this post.  Breaking the migraine cycle and getting an effective preventative can take time, so I offer these suggestions as a way to get through the worst of things until you find the right meds/therapies.
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Re: Help with Refractory Migraines

Post  Sara79 on Fri Jun 20, 2014 9:57 am

If the DHE caused cardiac issues, it's probably not worth trying cafergot. They are very similar, and if you had a severe reaction to one, avoiding the other is probably for the best.

I found a really technical article about current treatment options: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2386351/ This is also a good one to take to the docs, since it's reputable, and usually peer reviewed prior to publication.

One of the more promising things I saw in it was "Ketamine, a nonselective NMDA antagonist, has also shown efficacy in the treatment of migraine with aura and other chronic pain states (Kaube et al 2000). Its use in clinical practice is currently limited due to hallucinatory side effects. In the future NMDA antagonists may play a larger role in migraine treatment."

This one has similar info, but it's less technical: http://www.anesthesiologynews.com/ViewArticle.aspx?d_id=2&a_id=10104

I hope you're able to find something that helps, if you find something that's helping, please let us all know, it always helps to hear what's worked and not worked for people. Many times it gives all of us other avenues to try when our current one stops working or doesn't ever help.


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Re: Help with Refractory Migraines

Post  Seaine on Fri Jun 20, 2014 3:27 pm

Oh, yes, Migravent! I forgot about that until Micheletroyer mentioned it.

I had a pediatric neurologist who attempted several times to break my "migraine cycles", alas they did not turn out to be cycles but a permanent thing.  However, over the years I have found things that helped reduce the pain by very significant amounts and so that I can have a job and completed college, etc.  My migraines are not 24/7 but they are daily, in other words there are hours in the day when I do not have a headache but it always comes back.

Several times the neurologist had me on Prednisone; I don't really remember if it worked but the side effects ended up being too much.

One particular year I do remember, my neurologist recommended Migravent.  The migraines had become daily at that point, only much more painful than now because back then I did not know to avoid food coloring.  At the same time, the neurologist also sent me to physical therapy.  I had no idea PT had anything to do with migraines, but he said it might help if they worked on my neck.  He did not want me to go to a chiropractor because they are really limited in what they do and not the same as a physical therapist.  So, I started Migravent and went to PT at about the same time.  I remember after 5 weeks, my migraines changed from daily to only 5 or 6 days per week.  I know this doesn't sound like a "cure" or anything but keep in mind something that "small" can make a huge difference.  I am not sure if it was the Migravent or the PT or both that helped.  The PT was quite pleasant and felt very good when they worked on my neck and head, so there was no stress for me to go.  A few years later, the migraines returned to daily and I stopped the Migravent.  Still, it's worth a try.

I don't know if her neurologist has thought of these things yet.  By the way, I should mention that myself and many others here have been to very unhelpful neurologists or doctors before.  If you or your daughter are not happy with a doctor, please by all means find a different one.  Some docs just don't understand or care, or don't have the knowledge.

Oh, and one more suggestion.  I'm wondering, due to your daughter's age, if she has recently started taking birth control pills.  Many people here can attest that the synthetic estrogen in birth control changed their migraines for the worse.
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Re: Help with Refractory Migraines

Post  Platypus on Fri Jun 20, 2014 3:51 pm

Sara79 wrote:The word Platypus was looking for...tolerance.
No, this isn't tolerance. Tolerance comes from overuse of certain medicines, develops over time, and can be reset by discontinuation. The syndrome I'm referring to is the complete cessation of efficacy of a medicine. It can happen w/ any medicine, and once it has lost efficacy it never works again. Probably a function of neuroplasticity.
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Re: Help with Refractory Migraines

Post  Platypus on Fri Jun 20, 2014 4:00 pm

sjmnhall wrote:So the big issue is how do we break it
Have they tried Prednisone or other steroids? What about IV Depakote? Nerve blocks or trigger point injections? If none of those work there are other infusion therapies (typically one week) besides DHE she could try: Magnesium, Lidocaine, Keppra, et. al.

Hope this helps.
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Re: Help with Refractory Migraines

Post  Migrainegirl on Fri Jun 20, 2014 8:48 pm

So sorry your daughter is having problems. Mine developed chronic bad headaches that persisted for several years until we discovered she had some impacted eye teeth the dentist had totally missed (grrrr!). Once she had those out it went away. 

Given her age, they may be triggered by hormones.  I found that bio-identical progesterone helped me a great deal in decreasing my migraine frequency. Try to find a nauturalpathic doctor to have hormone levels checked. 

When I was in Atlanta I saw Dr. Leslie Kelman who is supposed to be the best migraine neurologist in town.  His bedside manner is terrible (rather rude), but I think he is very competent. He did not end up helping my migraines any because I developed bizarre side effects to every medication we tried, but he was persistent in trying the gamut. 

 Hope this helps!
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Re: Help with Refractory Migraines

Post  Brenda L. on Wed Jun 25, 2014 8:01 pm

I wish I could help you. My migraines are both severe and constant---24/7 pain.

I've tried the IV's of DHE and more than I can write. 25 years of migraines, and it just keeps getting worse and worse.

So sorry that your daughter is going through these problems. I was in my teens when this all began, and what a road it's been. Hopefully your daughter will be one of the lucky ones who either finds something that works for her, or her migraines may go away as she gets older. (I've heard that one way too many times. My migraines have only gotten worse, the older I get).

I'm in so much pain right now I can barely read.

I just want to wish your daughter all the best in finding something that works for her! Good luck!

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Re: Help with Refractory Migraines

Post  Brenda L. on Wed Jun 25, 2014 8:05 pm

Yes, it seems that many of the top 'headache specialists' are very rude. There's one in my area of the US who is supposed to be the 'best' in the area, but he is terribly rude and mean to his patients. (I don't understand how a 'headache specialist' can have so little compassion for suffering migraineurs).

I lucked out with my pain doc, though. He's one of the most compassionate doctors in the USA. He's even gotten awards for 'most compassionate doctor' and these are rated by the PATIENTS.

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Re: Help with Refractory Migraines

Post  Brenda L. on Wed Jun 25, 2014 8:35 pm

Michele, I just wanted to let you know that I can totally relate to your experience with migraine disease. I've been hospitalized several times with DHE-45 IV's, tried meds with horrible side effects, you name it.

I struggled to get through college. I don't know how I ever graduated. Back then I would have long 'breaks' between migraines, so I would go to school for a semester when I was pain-free, then as soon as I finished Final Exams I would go into yet another 4-month status migraine attack. I would then have to take off the entire next semester. It took me 8 years to get my B.A. degree (3.9 GPA)---don't know how I did it. Congrats on getting your degree, too. I know how hard it is.

I too had to take classes at certain times of the day, take semesters off, etc.

Work is out of the question for me, too.

Unfortunately, I do not have the work credits needed to get SSDI. (10 yrs. ago I had enough work credits, but my dad told me I'd never qualify for SSDI. Dad said he'd talked to a lawyer. I trusted my Dad, which was a huge mistake). Dad never talked to a Disability Lawyer; I know that much. My Dad gave me horrible advice.

You're very lucky that you were able to work long enough to get the credits. I never knew that SSDI work credits 'expire', so I believed that SSDI would always be an option if finances got really tight in the future. Now finances are tight and my migraine has been constant for the past 4 years. I don't know what to do anymore. I'd give anything to be able to get SSDI. All of the financial stress is making my constant migraine pain so much worse.

I just wanted to let you know that I understand all too well what you had to go through with migraine disease. I'm now in constant pain, forgetful, unable to work, etc. I see a pain management doctor, who is my one saving grace. It not for him, I would not even be able to get out of bed in the morning. But I'm still in a lot of pain, even with a lot of meds.

Good luck to you!

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