Non-Responsive Migraines In Children

[crowebirds]

Since the first weekend in September, TLC has had migraines. We thought she was improving as she went a week (last week) without any migraines. We celebrated too soon, because now she has had a bad migraine three days straight with no relief from her preventitives, abortives, or sleep. She has now missed fourteen days of school. We believe that the migraines are caused by over stimulation (esp noise). School and church are the only two places that she goes where the noise is too loud. Does anyone whose children with DYS or young adults with DYS and migraines have any ideas of how to help her outside of the drug/vitamin realm. She is allergic to cold so we cannot apply any cold packs. All ideas are welcome.

[firewatcher]

According to my neurologist, I have had an ongoing "transformed migraine" every day for four years. It is not as bad as my "regular" migraines, but can get there with too much stimulation. Initially, Klonopin or Lyrica both helped. Unfortunately, I needed to keep increasing the dose to get the same effect. Three months ago, I began acupuncture because I did not want to go any higher on the meds. I have now been able to come down to 1/3 of what I had been on and not had an increase in the severity of my headache. Right now, it is the best that it has been in those four years. Sleep deprivation and too much stress/stimulation will cause my headache to spike, but it does not get to the same intensity as before.

If you decide to find an acupuncturist, make sure that they do it ALL the time, not just once or twice a week. Experience is key to success. Also, don't think that an MD acupuncturist is better than a non-MD, you want to find one with more experience, not more titles.

Good luck, I can totally empathize!

[Noreen]

I have had a measure of success with entymotic ear plugs. They were originally designed for musicians and their crews to protect them from the constant high decibels their occupation entails. Here's the Amazon link - etymotic ear plugs.

I ordered mine directly from the company a while back and they came with a little case that I clip to the outside of my purse. They do not eliminate all sound - they turn down the volume thereby helping those of us with overly sensitive neurological systems. As you'll note under Amazon customer reviews, someone with a brain injury termed them life saving.

hope something helps,

noreen

[jjb]

Have you tried the mito cocktail yet?

[crowebirds]

I have a coworker whose wife and daughter has DYS. The wife had used an acupuncturist she had a bad experience. My coworker told TLC all about it. It will be hard to convince her to try one now.

I am going to get the ear plugs and try them. We have tried the sponge ear plugs but they just keep coming out.

I can say no to the mito cocktail. Still curious enough to ask for more details though.

I can tell you though, the migraine she had for three days now mysteriously went away late this morning. They don't usually go away instantly and this one did. Strange. I am just glad it is gone.

[comfortzone]

Does your family have a primary pediatrician for your daughter? Or are you located near a tertiary care center like a big university medical center? It seems that this would all be able to be figured out with a couple of visits with a very astute primary pediatrician who is integrated into a system that does nothing but amazing consultive work for unusual cases. It's great you have the immunologist and all - but it seems as if a new set of eyes would be helpful to assess the situation fresh....as you've seen that one doc for near 5 years now and your daughters symptoms are ever-changing or at least not getting much better and new symptoms being added. Is there a big childrens hospital near you? I know Phoenix has both Mayo Clinic and an amazing Childrens Hospital -- and there are others in the nation for sure. Anyway sometimes specialists don't like to do much outside their niche - which is fine - but seems you sure could benefit from someone to see things again anew and quarterback the whole work-up for all the different disciplines that could/should be involved. I had a wacko accupuncturist also - and though it was a bizarre experience and I now truly laugh about how nuts the person was -- and how my body responded ... I'd venture there's one oddball story to every thousand good ones.... and the bad aren't really that bad.... you can always leave.......walk out -- you are in control -- not the person with their mini pins in you ;-)

[rach73]

Hi,

this is just a couple of suggestions to help cope with the migraines. When I was 13 through to about 16 I suffered with migraines several days a week. It was quite a few years ago and no medicine actually helped me. Usually becuase I used to vomit so severely with a migraine nothing stayed down. Preventative medication didn't help much either. However for some reason I got a small amount of relief by taking a baby asprin a day. It could have been coincidental but the migraines started to space themselves out.

I could never find a trigger for mine but they started when my Gran was terminally ill with cancer.

I have found that a hot water bottle applied to the back of the neck helps my migraines a lot. My old family Dr said it was because it helped the blood flow to the brain as during a migraine attack these vessels become constricted. How true that is I dont know as we are talking over 20 years ago.

I know several people that have had good results with the herb feverfew. Ive never tried it but it maybe something you might consider.

Are they using botox in your neck of the woods for migraines? Its a treatment they have just started here in the UK .

I really feel for your daughter as its so incapacitating. I really hope you manage to find something to bring her some relief.

Rach

[jjb]

I am going to get the ear plugs and try them. We have tried the sponge ear plugs but they just keep coming out.

I can say no to the mito cocktail. Still curious enough to ask for more details though.

RE: thew ear plugs, are you rolling them in between your fingers before inserting them?

RE: the cocktail, first in case you are not aware of this I thought I would mention that both dysautomia & migraines can be part of mito dysfunction.

My daughter is 6 and does experience severe headaches, but we just are not sure yet if they are migraines or seizures.

Also, she experiences cyclic vomiting. Right now we are leaning toward this being CVS which is probably more so migraine related. The mito cocktail has helped with this. It could be the carnitine, coq10 or one of the Bs or a combo that is helping with the migraines.

My daughter sees a neuro who specializes in mito disorders. She wrote a script of a cocktail of vits specific to my daughters symptoms and a compounding pharm puts formulates it.

Mito and pain (including migraines):

http://www.mitoaction.org/blog/pain

The cocktail explained:

http://www.mitoaction.org/blog/mito-cocktail

Mito/headache:

http://www.mitoaction.org/guide/headache

General overview of functional mito:

http://www.curemito.org/

Migraine/mito article:

http://headacheandmigrainenews.com/fight-migraine-be-nice-to-your-mitochondria/

Jen

[Heiferly]

I know you already said that none of the migraine meds worked, but I just wanted to throw this out there because it worked for me on a type of migraines I had that weren't responding to the regular migraine meds either.

I occasionally have these "humdinger" migraines that go on for multiple days at a time and cause severe mental confusion (such that I seem like I have full-blown Alzheimer's). Although my "normal" migraines usually respond to oral triptan medication (specifically, Maxalt-MLT ... I had tried Imitrex but had had problems with vomiting it up), these severe multi-day ones did not respond to the Maxalt, even if I took the maximum allowable dose over the course of the migraine. They were miserable and very frustrating to both me and my caregivers. When a new delivery method of one of the triptan medications was developed and my neurologist offered that I could try it, I was skeptical but I tried. It worked like MAGIC. Even though it's not different chemically (at least, I'm 99% sure it's the same type of medication), it definitely works differently for me. I'm guessing this is because it gets into your system so quickly so you can medicate immediately at the onset of symptoms.

It's called the Sumavel Dosepro, and it's a needle-less injection (it injects the medication into your thigh or belly using the force of a very strong puff of air, rather than a needle). Each injection comes already "loaded" with the pre-measured dose and they're one-time use, so all you do is follow the instructions to set it to inject, and press it into your thigh or belly and it delivers the medicine. I get a funny taste in my mouth within 30-90 seconds of the injection (yes, that fast) and my symptoms start improving within minutes. I can't say for sure (obviously) that it would work so well for everyone, but it might be worth a try if you haven't tried it yet.

http://www.sumaveldosepro.com/

[crowebirds]

Though TLC has not been given any additional meds for the migraines because of her sensitivities to meds, her immunology specialist put her Propanalol to help moderate her heart. After reading up on it, I found out that it is also used to treat Migraines. So far, it is working very well. She no longer has migraines everyday, so far about once a week. This is only her third week being on it. But I can tell that not only have the migraines and headaches been under control, but she has displayed a little bit more energy in the things that she does. She even has tried going back into phys ed at school, on a very minimal workout schedule (walking and stretching only). The first day she was okay, but the next day she had a light crash. This is the first sign of improvement from the DYS I have seen in a couple years. I know it won't last, but it is nice to see it.