Kathy MacDonald

My 13 yr. old daughter and I both have migraines and she has dysautonomia. Her migraines are all pretty classic with pain on one side, light and sound sensitivity, nausea, numbness and tingling, etc. Mine always begin with a pinpoint of jagged glittering "lights" in one eye. The "pinpoint" gets bigger and bigger until the vision in the whole eye is effected, then suddenly my vision clears. Then either the head ache begins or nothing at all happens. The neurologist says that both are migraines whether or not the head ache is present. If I get the headache, I too am sensitive to light and sound, have nausea, etc. My daughter's neurologist says that there is a very high correlation between dysautonomia an migraines.

Kathy

I can't really answer your question since I'm not a doctor but I was having a lot of visual disturbances and other neuro problems.  I saw a top neurologist, he said I was having migraines without pain, pretty rare.

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Mary, I think you are very right that Billie shouldn't be penalized for being sick. I missed over 3 months of 8th grade and it was really difficult to teach myself everything and keep up.Sarina

Hi Mary and Sarina,

We are in the process of dealing with the IEP/504 issue now. At the initial eval we were told that Billie isn't eligible for an IEP because she is making "adequate academic progress". She is a very bright 8th grader whose reading, spelling, and oral skills test at a college level. Math tests at an 8th grade level. However, she has major problems with written expression, organization, and some issues with social skills. The moral of the story is, "If you are a very smart kid, they'll say you don't have a learning disability." We have appealed thier findings and are in the process of getting an independant eval. We are trying to get her 504 updated. The problem is, she attends a private school. They are under no obligation to write or abide by a 504 because they receive no federal funds. However, they are perfectly willing to abide by a 504 if one is provided by the public school system. We are having trouble getting the public school to write it even thought they are supposed to do so. I've called the Special ed. dept. of the state board of education and they are going to intervene. Never a dull moment. :-)

Hi Kathy,

As far as the migraines, has your physician tried a combo drug therapy yet? My oldest that had migraines (hemiplegic) since age 5 that were just awful throughout her years, averaged about 2 x a week at some points in her school age about your daughters age.

They finally put her on a combo of Elavil & Inderal and over time it seemed to work well for her until finally she could be weaned off when she no longer was having chronic migraines. As far as the pain she is having, what type of pain is it? I'm not sure if you read my reply to your last message about loose joints but if she is hypermobile that can cause chronic joint pain as well.

Hi Sally,

Thank you for both or your replies. We saw Billie's neurologist in the ER today. She was so dizzy this morning that she literally couldn't walk. She got some Visteril and is better now. Anyway, the neuro says that Billie's Dysautonomia is relatively mild and doesn't fit neatly into any of the specific sub-types. She says the best way to describe it is mild EDS with multiple dysautonomic symptoms. Does this make sense?

Kathy

http://www.dynakids.org/Documents/newsletter2.pdf

NDRF Youth Network

Fainting Robins Newsletter

?The Young and the Diizzy?

?Back To School? - Special Edition August 2001

______________________________________________________

?Dysautonomia for Dummies?

Byy:: Drr.. Bllaaiirr Grrubb

There is a Dysautonomia for Dummies article at the Dysautonomia Youth Network website t

Thank you! This is great. I'm going to email it to all of Billie's teachers. Will have to figure out what to say to her classmates as well. Some of them have been very concerned about her and apparently at least one thought that she was dying!

Kathy

Kathy,

I'm 15 and while my dysautonomia has manifested itself slightly differently, I feel for your daughter. I was just recently diagnosed but have had it since 6th grade, so I've had to deal with a lot of the same stuff. Dyna kids is really great, so you should definitely check that out. Also, if either you or Billie have questions or want to talk about anything, feel free to either email or write me a private message.

Good luck with everything,

Sarina

Thanks Sarina,

I looked at the Dynakids site today and it looks great. I'm sure Billie will want to check it out soon. She's had a tough couple of weeks.

Kathy

The migraines, anxiety and constipation might all be helped immensely with magnesium.

Thanks for your suggestion. She gets a daily magnesium supplement because of her migraines. We will look around for the brand that you suggest.

Kathy

Hello,

I posted yesterday about my 13 yr. old daughter, Billie, who was diagnosed with Dysautonomia 2 weeks ago. I have lots of questions and don't know where else to go with them. Her next neuro appt. isn't til next month. Are there times when symptoms flare up and then are better for a period of time? For there past several months she has had a significant increase in migraines, and anxiety. She has missed 14 days of school this fall, mostly due to migraines. Last week she was out 4 days with a severe migraine and finally landed in the hops. on IV Morphine for the pain. She is on a new med, Topamax, to try to get the migraines under better control but it's not at therapeutic levels yet as it must be slowly increased. She has had an increase in dizziness and lightheadedness over the past week. (has had episodes in the past where it gets bad for a while and then gets better.)

Today she was very tired when she woke up after 10 hrs. of sleep. I took her to school. At 10AM the school called to say that she was very dizzy. I asked them to have her lie down for a few mins. and have some fluid and then try to go back to class. They called back at 11 to say that she had been sound asleep for an hr. and was still too dizzy to return to class. I left work to go get her and she was pale as a ghost and couldn't walk without holding on to me. She fell asleep again as soon as we got in the car and slept all the way home. She walked into the house and fell asleep on the couch. I woke her up for lunch and she went right back to sleep. She can't seem to stay awake. I don't know weather to think this is side effects of the Topomax or symptoms of Dysautonomia.

We are very concerned about how much school she is missing and, if she continues to miss so much, she could end up repeating the 8th grade. We are also concerened about the emotional toll taken by being sick and in pain so much. Has anyone written a "Dysautonomia for Dummies" book java script:emoticon('') to tell us how to live with this? In all seriousness, I am very interested in any books or articles that anyone might be aware of or any advice that you might have.

Kathy

Welcome. I just wanted to say that you have one of the best academic research centers for anxiety right there in Boston at Boston University. You should definitely see if they have any studies going on right now. I think if you do a Google search on "anxiety and Boston University" you'll find some info.

As for POTS, it sure seems that many here also have anxiety. I do. I suspect an overactive nervous system makes it easier for both disorders to pop up.

Amy

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Thanks Amy. I went to grad school at BU so I'm familiar with that program. We are fortunate that Billie has a wonderful therapist at Children's Hosp. who specializes in both chronic pain and anxiety disorders. I don't know what we wold do without her!

Kathy

Kathy, welcome to the forum.

I share nearly all of your daughters symtpoms with the exceptions of ocd, anxiety and hypersensitivity to pain. I'm undersensitive to pain. I have had autonomic problems since birth.

Hard to say what type of dysautonomia your daughter has, but you may want to read up in the following locations:

Hi Nina,

Nice to meet you. The neurologist told us that, while Billie has hypersensitivity to pain and decreased sensitivity to cold, that others with Dysautonomia can be at the opposite end of the spectrum. I've looked at the sites you mentioned but still can't figure out which type Billie has. Guess I'll have to wait til the next neuro appt. and ask the doc.

I was reading some common symptoms on an other site last night and found more info that fits my daughter including the need for 12 hrs. of sleep at night, never drinking enough fluids, insomnia, and being more susceptible to viruses than most other folks. This diagnosis has helped us to fit togehter all of the pieces of the puzzle that we have wondered about for so long.

Kathy

I joined this forum because my 13 yr. old daughter has just been diagnosed with Dysautonomia. For the past 4 years we have aasked how one child can have so many medical problems and have them not all be related. We just took her to see a new neurologist and now we know, in fact, most of her medical issues are related. She has these and more...

Migraines

GERD

Constipation

IBS

Dizziness and fainting

Generalized anxiety disorder

OCD

Hypersensitivity to pain

Lack of sensitivity to cold

Icy cold but sweaty hands and feet

"Loose joints"

Currently her migraines and anxiety are the biggest problems. I didn't realize until after the neuro appt. that there is more than one type of Dysautonomia so I didn't ask which type she has. Can anyone here make a guess? We live in Boston and Billie is followed by multiple docs at Children's Hospital. We want to learn as much as we can so that we can help Billie. I look forward to learning from all of you.

Kathy