Hemiplegic migraines, passing out, and seizures

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vickabee
Regular Member


Date Joined Jun 2009
Total Posts : 53
   Posted 6/23/2009 9:54 PM (GMT -7)   
My 15-year-old daughter started having shooting pains in her head when she was ten or eleven.  A CT scan showed calcium in one of her arteries.  The MRA showed it was okay.  Then she started having her eyes roll around and her vision go completely black.  Then she started passing out, having seizures, and half of her body would go numb.  We were told she had hemiplegic migraines.  The way I understand that means there's a problem with the calcium going in and out of her brain.  Later we found out her Vitamin D was half of what it should be, calcium low, phosphate, high, and thyroid number off.  Also, when she's gone out, we've taken her to the fire station and her blood sugar has been 54 or 60.  The cardiologist has said her blood pressure is dropping and that's why she passes out.  We also found out she has an overlysensitive carotid artery.  She's also been having kidney stones.  She has pressure behind her eyes behind her eyes also (eye doctor said everything was okay with her eyes).  She gets shooding pains from her head down to her tail bone and goes out sometimes from that. 
 
One of the times when we went to the emergency room, one of the doctors said she had inner cranial pressure but then they switched shifts and it wasn't written down for the other doctors and we haven't heard anything more on that (maybe one of the doctors or interns spoke out of line and was wrong), but I wonder about that also.
 
We have seen a neurologist, chiropractor, orthopedic, ophthomologist, cardiologist, urologist, nephrologist, geneologist, and endrochronologist.  We have gotten some answers but not an answer as to what is causing all of this (if there's a syndrome or what could cause all of this.)
 
She had a cleft palate (three surgeries for it), and six sets of tubes.  We've always wondered if any of this could be associated with the cleft palate or some of the surgeries (maybe scar tissue effecting the nerves?????).
 
God bless you and thank you for any advice you might have.
 

Sweden
Regular Member


Date Joined Jan 2009
Total Posts : 55
   Posted 6/23/2009 11:32 PM (GMT -7)   
Hi Vickabee!!!  I am so sorry to hear about your daughters problems!!!  But the problems with doctors many times is that they
all give different diagnosis!? So i understand that you have a lot of thoughts spinning around in your head. I was thinking:-
has she had any paralysis in one side of her body?
 
The numbness and blindness is a aura symptom when we have Hemiplegic migraines and of course the headache!! I too have
often pain in back of my eyes, that is a thing we with migraine can have.
There is another type of migraine called Basilaris ( hope it spells the same in english ) migraine that make the patients pass out
from time to time so of course that can be related to the migraine as well.
 
And yes you understood it right that when we have HM we have problems with our calcium channels  ( going in and out in our brain )
 
The best should bee if you have a chance to get your own neuro for the migraines, i mean to have the same neuro all time who
you can get help from, and who is with your daughter all the way throw her treatments concerning the HM, there is a lot of medication
who can help her, and sometimes it can take a while to find the right one, therefore it´s good to have one neuro who nows all about
her and who you can turn to when you need.
 
I wish you all the best and of course a great warm summer!!!!
 
With love / Sweden

vickabee
Regular Member


Date Joined Jun 2009
Total Posts : 53
   Posted 6/25/2009 4:40 AM (GMT -7)   
Sweden,

My daughter has had numbness on the left side of her body, and she has had times of her whole body going numb. A couple of hears before her body would go numb like this, her face would go numb.

Something I forgot to put earlier is how there have been times that when she comes back to she has slurred speech and can't get her words out (periodically this has happened). Also, she has had times where she can't swallow her food after she chews it.

It seems like there is so much more to migraines than most people consider the norm. I've had minor migraines in the past because of estrogen levels, and I would never have thought that there could be such extreme effects from migraines, but there are many.

Thank you.

God bless you.

Sweden
Regular Member


Date Joined Jan 2009
Total Posts : 55
   Posted 6/25/2009 5:32 AM (GMT -7)   
Hi vickabee!!!  I often get paralysed at one side of my face 10-15 minutes before i get paralysed at my right side of my body,
i too often have difficulties with my speech i start vomiting, and sometimes i ca´nt talk at all one or two words only, and get really
confused i dont understand much.
At first when i had theese attacks as i call them i too had  some episodes when i had trouble swallow food and even water.
 
The first time i had an attack i got paralysed in both sides of my body where in hospital for one week, but after that it has always
happened to the right side of my body, there is some of us who have this problems in the left side and some in the right side.
 
Before i had medication for this i had only 1-2 days a week when i was ok, but now after the neuro gave me epilepsy medication
i have attacks only 3-6 times a month, so there is a big different when we medicate for the auras.
But today i am very happy to say that for the first time since June 2006 i have had none  attack so ever for one month now!!!!
 
So...... try too find a good neuro who can help your daughter, and give her medication for this disease. Many neurologists have
never seen a case of either HM or basilaris  migraine beacuse it´s a very rare disease.
I too did´nt now that migraines can do theese things, and that there is different kind of migraines!!!
 
Ok if you wondering of anything or just want to talk with someone about this who understand how it is to live with HM so i gladely
would do that.
 
It is hard for a parent or some family members to stand next to a person and see theese attacks and not be able to stop them.
 
OK enough for today, i have to start cooking here so my sons can get some food ( and of course me too )
 
Bye / Sweden

tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 6/25/2009 10:02 AM (GMT -7)   
Vickabee-
Have you thought about looking at the NHF-National Headache Foundation, they have local support groups. This might be a good idea to get involved.

You know how you said, "It seems like there is so much more to migraines than most people consider the norm. I've had minor migraines in the past because of estrogen levels, and I would never have thought that there could be such extreme effects from migraines, but there are many." It amazes me how people just think migraines are "bad headaches" and they dont really understand all the other things that come along with it.

I just wish they could trade places with us for just one day-so they would truly understand.
Sara-Migraine/Headache Forum Moderator
Battling headpain for 17 years.
DX: occipital neuralgia-radiofrequency nerve ablation every 6mo
 
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SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 6/25/2009 11:11 AM (GMT -7)   
Not only does she need a regular neurologist but you might want to take her to a teaching hospital, as they have the best of best technology and try to find the rarest of diseases. I stumped a hospital with my eye a week hospitilized no answers. Go to a teaching hospital...a biopsy showed I had a autoimmune disease and necrotizing gramultous inflamation and a tumor. I went 3 weeks to my doctor, a week in the hospital and then the teaching hospital is what found out why. Never give up.
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days

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