Migraine

Hi all,
My daughter Breezy has had a transformed migraine for 18 months now. It is accompanied by black spots in her eyes and/or dizziness every 45 minutes or so lasting for a few seconds around the clock. Additionally, she also experiences a lot of pain in her eyes when the pain is particularly sharp.

Things like reading a book, reading on the computer screen(more than a page), trying to read a white board in school that an overhead projector is focused on (particularly with the light off), trying to watch a movie- again particularly with the lights off, or reading notes off the blackboard all cause more pain for her head and pain in her eyes. Her vision was completely checked by an optomologist earlier this year with no problems noted.

I am not a migraineur myself, so i am tying to understand this complaint and how to best help her in school. What type of accommodations would be reasonable to request? What type of accommodations can be suggested for her at home for reading or using the computer to do research for school?

Thanks!
Cindy G

With all the things that bother your daughter at school, she may qualify for a couple of programs - and IEP (individual education plan) or a 504 (mostly an accomodation plan).

Now, all I know about these two come from having a child with ADHD. But some things I can think of off my head are getting a buddy to take the notes off the blackboard, having someone read to her, maybe having her sit in an area where a light can be on during a movie or with the projector. Do the windows have pull down shades? Maybe she can sit by one that is left open.

At home someone can assist her with reading or using the computer. It will most likely put some burden on the family, but it might help.

You'll need some documentation about what bothers her at school to get an IEP or 504 plan going. I don't remember, is your daughter seeing a neuro or headache specialist?

Here is some info on the two plans:
504

IEP

Cindy,

I've gone back and read your other posts. Am I understanding that she's had the same Migraine all this time? Does she get any breaks in it?

This is not transformed Migraine. Transformed Migraine is when occasional Migraines "transform" into having a headache (not a Migraine) every day punctuated by debilitating Migraines. You can find more information in Transformed Migraine - The Basics.

How often does she take a triptan or pain meds? Medication overuse headache, aka rebound, is a factor in about 80% of transformed Migraine.

Please let me know if this has been one long Migraine?

Thanks Deb.
I appreciate your input. I liked the link to 504 that you shared. I especially liked that the site does list some typical or possible accommodations.

Because Breezy can learn with the general curriculum, she is not eligible for an IEP. Breezy does have a 504 plan in school, but i do not have particular accommodations for the vision problems she is experiencing. Not being able to read much is a big deal for school!

I will make sure we are more available to help her read from the computer at home. And, i know we can get some books on tape from the library for some of the outside reading she has to do for school. I feel a little like that's cheating, though.

Where do they sell magic wands? i am in need of one.
Cindy

Hi Teri,
THank you for responding.
Breezy has had one long, never ending migraine since 9/11/06. The year prior she had many (15-20) "all over the head" headaches that lasted about 1-2 days. Since the onset of this head pain, there has not been any break. Her head pain is generally on the left on her forehead, though it occasionally switches to the right (more painful), and it was once on both sides (very painful).

Breezy has had a CT scan, MRI (twice) and lumbar puncture. She was also checked by a cardiologist because of the dizziness accompanying the migraine at times (no problems there). She has had 3 trips to the Emergency Room where she has had morphine, torridol, reglan and fluid, but we have gone home without her feeling relief. An overnight stay at CHildren's Hospital in Boston turned out to be a psychologist consult where we were told the pain could be conversion ( i don't believe it myself, though i do believe in the mind/body connection)

She saw a neurologist very early on, so we knew not to take the over the counter medicines. SHe does not use any of them at this time. Similarly, she is not using any triptans at this time. She did use Maxault and Zomeg for a short while, but neither med made a change in her pain level.

Breezy's pain is generally on a moderate level(does stuff, though the pain is always there and keeps her from some things), though it is sometimes severe (can't really do anything but lay there)

Breezy has a new neurologist now, also from Children's Hospital in Boston. SHe is a pediatric neurologist with a specialty in pain management- hense our closer look at this as chronic pain. I do like this neurologist. My insurance will not pay for us to see a specialist out of state- unless there is a way around that that i am not aware of.

The new neurologist did call this a transformed migraine- as did the old one... But, please excuse my ignorance if i am wrong.
THoughts? Suggestions?
Thanks .
Cindy G.

Cindy,

I'm not a doctor and can't give medical advice, but I'm glad to share information.

One log Migraine is NOT transformed Migraine. Unless she's had a solid four-hour pain-free periods while awake, it's most likely now status Migrainous.

Pain management is not the best way to treat Migraine. The Migraine needs to be stopped, and there are quite a few medications that can be tried via IV infusion. During a Migraine, there's a lot going on in the brain, including dilation of blood vessels and inflammation of the nerves and tissues surrounding them. All of that needs to be stopped, and pain meds can't stop it -- only mask it for a few hours.

I know you're in a tough spot, Cindy. The absolutely best advice I can give you is to try to get her to an actual Migraine specialist. Neurologists and pain specialists aren't necessarily Migraine specialists. Insurance can be a real pain on this, I know from personal experience. I was having to drive eight hours to a specialist, and when my insurance changed and didn't pay for it, I was paying for it out-of-pocket. One thing you might try is looking up Dr. Elizabeth Loder in Boston. She's changed her practice and isn't seeing Migraine patients long-term, but I think she's still doing initial consults to diagnose and make treatment suggestions to be followed up with patient"s own physicians. She's magnificent, and if you can reach her, feel free to tell her I suggested you call.

I hope this helps at least a bit.

I'd wonder if the trouble with the white board, computer screen, overhead, and movies is a sensitivity to glaring issue.

I know that I absolutely hate white boards. I very much miss the green chalkboards at school. Part of the reason we get so much glare is that they don't use actual white boards. It's a lot cheaper to use sheets of shower wall, so that's what they do. They have a much glossier finish to them than a real whiteboard, so the glare is that much worse when the light strikes off it. During migraines, I know I'm more sensitive to trying to read off of the white board, though I don't tend to have much trouble with computer screens. Sometimes it won't be comfortable to read, either, because my eyes will feel heavy (it's almost a stiff, tired feeling) and the text seems to do shifty kinds of things. I'm most susceptible to issues reading texts during a migraine if I'm particularly tired. Otherwise, that doesn't tend to bother me, either. I often turn to curling up with a book to shift the focus off the pain during a migraine.

It may well be a glare issue. I know a lot of my light sensitivity actually has to do with glare. (For a refresher, glare = difference in light between one thing and another, like if there's a really bright window in a really dark room, that's a lot of glare.) She may want to try some sunglasses with polarizing or amber-colored lenses, as both do well with cutting glare. There are also some amber-colored contact lenses available now (originally marketed for sports use but available to the general public) that may be an option.

I have the most trouble reading on a computer, especially CRT monitors (the old bulky ones). Flat-screen LED monitors are much better, though they still bother me. I have to turn the brightness way down (usually about 30%) to use them. You may want to make sure you daughter knows how to do this, or somehow has this added to her 504 plan. Do you know what kind of computer monitors she has at school?

Also now that I'm thinking about it, movies often bother me not only because of the glare issue, but also because of the loud sound and often jerky movement. This is probably less of a problem with the types of movies she's watching in school but it's something to be aware of.

Also, my specialist mentioned to me that magnesium supplements sometimes help with light sensitivity, so if your daughter isn't already taking some, you may want to talk to her doc about that. Magnesium is also often used as a migraine preventive.

Hope this helps.

I thank you all for the helpful information!
Teri, Wow., OK. I appreciate the lead to Dr. Elizabeth Loder in my area. I looked her up and she is at Brigham and Woman's in Boston. I will contact the office Monday and see what is what with getting an appt. for an initial eval for Breezy. If this does not work out, i will travel outside of my area and pay out of pocket at least once with a migraine specialist.

MJ and Dragondrool, I actually didn't know what constituted glare, but it makes sense that the glare is likely the problem. We did play with our computer monitor's screen a bit and Breeze said it was a little helpful. I will ask the school about that screen, though Breezy said she isn't on the computer at school too much.

Is there a way to change the color of the background for other than Word? Has anyone tried overlays on text?

Cindy G.

Cindy

Andrew went through a long period of time with a constant headache and then he would get migraine on top of that. It all started with one bad migraine behind one eye. The first doctor called it Transformed Migraine. He has been diagnosed with Status Migraine a few times. He was also diagnosed with Chronic Daily Headache and then it was diagnosed as New Daily Persistent Headache. That went on for several months. During that time Andrew had a LOT of dizziness. He still has some dizziness on ocassion.

What does Breezy take for preventatives? Has she ever been given steroids or any IV treatments? We have used steroids a few time with some success to break a bad cycle. Andrew has been an inpatient twice and he has had other IVs at the doctor's office. He has used DHE injections too.

He does take supplements too. I give him migrelief which has magnesium, riboflavin and feverfew. He also takes petadolex (butterbur).

You can get glasses with anti glare. I wonder if that would help?

I'm sorry that Breezy is having such a bad time with all of this. You'll be surprised what a different doctor might come up with. We have seen two of the pediatric migraine specialists on the list so if you decide to travel I can give you more information on the two we have seen.

Jean Ann

Hi Jean Ann,
I always look with interest at your posts as their are a lot of similarities between our children, not the least of being their age. Each month or two brings new symptoms or challenges with this it seems. Right now Breezy's dizziness isn't too disabling.

Breezy is just ending depekote and cymbalta. She is starting Lyrica. SHe previously did long stints with topomax,zonigran, amitryptiline, and neurontin as well as shorter stints with a few others. Nothing has changed her pain level at all.

I am going to try the specialist in Boston that Teri suggested. I feel like i am jumping all over the map as we just changed to a new ped. neurologist who runs the headache clinic at Children's at Boston. I do like her, but am not adverse at all to hearing a different opinion. I hope to be able to take the specialist's advice and work with it with the ped. neuro at Children's. I know you and Andrew are currently with a Dr. in Baltimore. I figure that (or adult specialists in Stamford CT) will be next if this doesn't work out. I know this sounds silly, but i feel like i am insulting the current doctor by going to a new one? Can we return to the old one with different advise? How does this changing doctor business or getting a second opinion work?

Thanks.
Cindy G.

Hi Cindy

Unfortunately, we do have a lot in common right now. I hope the next thing we have in common is that our kids get their migraines under control.

I will try to summarize my doctor stories for you. I have not switched doctors for a second opinion, but I have switched because either the doctor didn't know what to do next, I didn't like the doctor or the doctor referred me elsewhere.

We started with our pediatrician. Then we went to a local neurologist. They sent us to Chicago. I truly believed that the hospitalization in Chicago would solve all of the migraine problems. (I didn't know as much then as I do now.) I never intended on staying with Chicago because it's a plane ride away, and communication from afar was extremely difficult there. I knew I could find something closer.

I found a neurologist in Buffalo (3 hours away). He had more expertise than my local doctors, but he quickly ran out of ideas or should I say we needed more expertise than he had. I did like him and his staff a lot, but they had nothing more to offer.

That was when I found this forum. I got the list of doctors and started looking again. I went to Dr. Yonker in Delaware next. She had one more treatment option for Andrew. Unfortunately, that didn't work either. She gave me the names of 3 other headache treatment doctors. We tried Jefferson in Phila first. We went there in the fellow program. We had a nice fellow, but he left after we met with him twice. So, we got a new fellow that I disliked immensely. I just don't think he was the right doctor for an adolescent. I spoke with the administrator at Jefferson and they wouldn't let me switch to anyone else there. So I left.

Dr. Gladstein was one of Dr. Yonkers referrals. We went to him after leaving Jefferson. That is how we got to where we are today. We have been with him for about 6 months. I believe we will be with him until Andrew gets too old for a pediatric specialist.

I like Dr. Gladstein a lot. He is always available. I email him whenever I run into a problem. He understands adolescents too. That is a HUGE help as you can imagine. I felt sick about switching doctors too, but I had to do something to help Andrew.

I think if I were seeking a second opinion, I would not mention it to my current doctor. When you hear what the new doctor has to say, you can decide if you want to stay with your current doctor or switch to the new one.

Has Breezy ever tried any IV drugs or the steroids or anything to break the cycle she is in? Have you ever tried Petadolex? Petadolex is a supplement. It was given to us by Jefferson for New Daily Persistent Headache. Eventually, Andrew's NDPH went away. Was it the petadolex? I have no idea. He continues to take that today. You could ask your doctor about it.

Best of luck to you and Breezy. This can get better. It's unfortunate that it takes so long and so many drugs. But, we have had an improvement since it all started. It seems like we get one part of this better and then something else happens. I guess that is the nature of the beast.

Jean Ann

Hi Jean Ann,
Thank you for sharing your doctor stories with me. We have yet to try some of the IV drugs which may be helpful to Breezy. Part of me wants to scream that it has been 18 months- how could we not have tried them yet. But I am definately watching the doctors closer now that i have this site and know more. Her pediatrition is absolutely wonderful and has helped us sift through information. The only IV drugs Breezy has had are torridol, reglan and morphine during 3 separate e-room visits. She has tried Pretnezone for a week on two separate occasions.

I like the Ped. neurologist Breezy has right now. She has a great way about her and with Breezy and she gave us hope when we really needed it. We see her again very soon so i will have more to discuss with her.

Sigh. Your stories about it going away -for a period anyway- for Andrew give me hope, Jean Ann. THanks.

Cindy

We've had a couple of students in the last few years with visual issues involving colored overlays, so of course, being a curious sort, I had to play with all the colors. Some were better than others for me. The yellow, green, and blue were the best for me. I didn't like the pink/rose color at all. I believe there was purple, too, but for me, that one made the text recede and kind of wash out. I would think you might be able to get colored overhead transparencies at some copy places, like Kinko's. I think that's where we got yellow ones back in college, which we used to use when photocopying notes. If the print is faint, and you lay a yellow transparency over it, it sharpens and darkens the print for your copy. Fun little trick, that.

As for the computer, I know Windows has some settings you can adjust in the control panel. You can reverse the background and text from black on white to white on black. I think there might have been something with purples and greens, too. I only know this because we had a kid who claimed a glare issue mess with one of our computers in our classroom last year, without getting permission. He had to explain what he did when we made him fix it back. I'm assuming the settings and that are a standard thing.

Okay. I went scrounging. It's under the Accessibility Settings part of the control panel. There's a "display" tab.

quote:

Originally posted by cinteach:


Is there a way to change the color of the background for other than Word? Has anyone tried overlays on text?

Cindy G.

Something else that cuts glare - polarizing film/glasses. Of course, you would want to talk this over with your child's neurologist/optometrist/ophthalmologist first.

Cindy, from where I sit, as a mama of daughters with disabilities, a teaching assistant for students with disabilities, and a migraineur, you absolutely want to get Breezy's 504 Plan modified to get accomodations for her migraines. In your shoes, I'd be on the phone tomorrow (or sending a fax, so you have a dated hard copy) requesting a Study Buddy to take notes, preferential seating to minimize glare, shortened assignments to minimize reading, and a transparent, colored overlay for her book pages to help cut the glare.

Also, look into getting tinted loose leaf paper and notebooks for her to write on/in. These can make a big difference.

Fingers crossed,
Rebecca