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Binks
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/23/2009 4:47 AM (GMT -6)   
Hello everyone

I am writing this as a desperate Mum trying to find some answers for my 9 year old son

Up until about 18 months ago he was a happy normal child, he then showed some signs of Petit mal "type" seizures, I say type as they were typically longer than Petit Mals and he kind of shook himself afterwards and felt a little disorientated and was aware something had happened to him, from this time they got less frequent and in fact have not been seen in him for some time

about 8 months ago out of the blue one evening he was going to bed and heard a bump and then a voice demanding to know why he had done that, he felt confused but just continued to bed, from there he had fitful sleep and found upon waking there were people in his room and experienced extreme pain to his head, the hallucinations were so severe he found it hard to get from his room to mine

When he came to me he explained movements on the ceiling of lots of colour with blurring down the edges, he said that people were coming at him through the carpet and that my voice was going slurred and low, I could see his pupils dilating rapidly before coming back to normal, he heard scratchy voices in his head that started to scream and become multiple until the pain in his head was so severe he clutched it crying for it to stop, after treating him with calpol and ibrufen and finding his condition was getting worse to the point he could no longer see me from the hallucinations and flashing lights I called for an ambulance

At the hospital they were baffled by his condition and gave him morphine and admitted him to a ward, from here he continued with the hallucinations and voices telling him to get out of the hospital until just after ten the next morning, they ran several tests on him all of which came back clear including a EEG and blood tests

They then sent us home hoping it would not occur again suggesting it was either a severe migraine or seizures which changed the neurological patterns in his brain

It did occur again one sunny afternoon while walking the dog with my husband, he heard voices and expediently on his arrival home I gave him calpol and ibrufen, a big glass of water and laid him in a dark room with a cold compress on his head the again his condition deteriorated into severe head pain and hallucination, three hours later he slept so the quick actions helped him over come the situation quicker?

He then had a period of nothing and all was well

Just before Christmas he suffered several more episodes of occasionally hearing a voice or a small hallucination and then Christmas Eve he had another three hour episode with again me treating him as if he has a severe migraine with all of the severe symptoms present

On the 3rd of January he had yet another episode but it started with him watch television, he said he disappeared into a dark room where there were men with guns and when he came back he was no longer sat up but laid down and he had hurt his leg, he came to me upstairs emediately where I again gave calpol and ibrufen and tried to treat him with what seemed to work before,

He lost vision and could no longer define the floor and thought he was floating in a sky blue area, the water I gave him flashed different colours and he said it did not taste like water, he becomes very distressed and dizzy, he said he could feel him self having shakes and that someone was touching on the head and arms (this he later described as pins and needles) His speech became very slurred so again we took him to A&E

From here they wanted to treat him with Sumatritan on the onslaught of any symptoms, he had another episode with 48 hours and I used this medication which gave him side effects of involuntary body movements but helped the episodes in the effect that the hallucinations became more pleasant ones and the pain was lessened, he another half the next day as the symptoms were still very much present, from here i insisted eh should have a preventative as well as a medication that helps him at the time so he was put onto Pizotifen and has now been on this medication for two weeks though I understand it takes three weeks for this drug to be fully in the system and working he has said he is sleeping better and not dreaming the hallucinations before they happen and not waking with the small pains in his head any more

Last night he had yet another episode that came very quickly and very violently, he lost vision of walls within five minutes and the pain was extreme with screaming voices, I treated him with the Sumatriptan but within half an hour he became unresponsive, dilated eyes and wobbling jaw, he was like this four times for a period of about 20 seconds, he was very distressed afterwards and gasps for breath and said he was taken to the dark room and he could not move though he tried very hard, he could not hear or see me, again I phones for an ambulance where he continued to hallucinate and had another two less severe episodes of being unresponsive, I have now been told to take him off the Sumatriptan as this may have caused the seizures and is due back into clinic again next week

He has so many of the symptoms of a severe migraine but so severe that i cannot find all of his symptoms and I have known very little about the condition until I have been looking it up since he has been diagnosed with a "possibilities" of migraine but the literature is never the same and never mentions faces ect

Have I come to the right place?

PS he never vomits or feels sick though darkened rooms appears to help though the hallucinations get worse when he closes his eyes so he needs some light and does not complain at lights

Post Edited (Binks) : 1/23/2009 3:51:55 AM (GMT-7)


Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 1/23/2009 3:34 PM (GMT -6)   
I'm so sorry you and your son is going thru this. I have a son that will be 9 next month and I couldn't imagine how scary that would be. But truthfully I never heard of migraines doing any of that stuff. I know when I got my first migraine after I had my daughter when I was 18 years old (7 years ago) I remember voices sounding really weird and slow. But I was vomiting like crazy and things looked weird but I didnt hear any voices or anything. Sorry I cant help you more. But I certainly would be taking him from doctor to doctor til I got answers. Have you takin him to a neuroligist yet??

-hellokitty
I have Migraines, Pancreatic Divisum, Severe lower back pain, Fibromyalgia, Asthma from Chronic Bronchitis
Meds: Suboxone 8mg 3xday, Cymbalta 60mg @ night,
Zanaflex 2-4 mg @ night as needed, Treximet as needed,
Ventolin Albuterol Inhaler as needed which seems to be everyday.
Been on Diability since I was 22 for Migraines and chronic Pancreatitas(started the processes when I was 19, I'm 25 now) but am working to get off of it ASAP,I want to be a nurse and work at a Impatient rehab with people with addictions of all kinds


Binks
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/24/2009 4:58 AM (GMT -6)   
Hello Kitty

Thank you for your reply

He is under a pediatrician and I have managed to get him back in for next week, I will ask about a neurologist when I am there, thank you for that, I have been up half of the night thinking things through and think he might be having an allergic reaction to mushrooms?? I will spend the weekend researching this and see if I can come up with anything, It would appear he would have this reaction even if he touches the mushrooms and the more raw they are the worse they are for him

I am sure we have a long way to go yet for answers but answers there must be, he was just a normal child before this

Thank you again for your reply Kitty it means a lot :-)

PS Do you have to feel sick for it to be a migraine?

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/24/2009 6:17 AM (GMT -6)   
No we dont have to feel sick for it to be a migraine. Some people dont get sick and jsut get the migraine. However, I dont think your son has migraines. Is he on any medications? It can be a severe medication reaction, a tumor, cancer, personality disorder, benign tumor, necrotizing gramultous inflamation, some mass, etc. Has he had a MRI or CAT Scan? What happens when he eats the mushrooms?
If you think its an allergy, he can be tested for allergies at least.
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: Imuran, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


Binks
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/24/2009 7:22 AM (GMT -6)   
Hello Smurfy

Yes he has had an MRI and an EEG and all clear so that is good, so nothing nasty going on

I am going to ask next week for an allergy test wink

He has been put on medication for migraines

Thank you for your reply :-)

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 1/24/2009 1:32 PM (GMT -6)   
Hello Binks, As a Mom, I would be as terrified as you are; my son started with migraines at age 4 or 5 but he did not have a seizure disorder, nor did he hear voices. Was he running a fever when he had these epidsodes?, one of my other sons would have peculiar symptoms when running a high fever...just a question. I have many types of migraines and I do not get sick with any of them; I tend to think along the same lines as Smurfy, especially if this head pain follows a seizure, perhaps it is part of the seizure disorder.

I would find the best pediatric neurologist you can find for him; good luck, let us know how you're doing and how he is doing as well.

tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 1/24/2009 11:00 PM (GMT -6)   

I am so sorry you son is sick, I know that is terrifying.

I have not heard of migraines/headaches causing voices or hallucinations. I am going to do some research and see if I can find anything for you.

Please keep seeing the doctors, if one doesnt help you move on to the next one! Don't let them tell you "I dont know" I heard that for a long time and my situation isn't nearly as serious.

Keep us posted on how things are going!!!!!


Sara-Migraine/Headache Forum Moderator
 
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Binks
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/25/2009 3:47 AM (GMT -6)   
Hello LdyJane and tysmyboo

We checked his temperature when the response team got here but nothing, I wish it were that simple cry

We have chucked out all of the mushrooms in the house and checking everything he eats, only time will tell now, Yes there are some type of seizures present but this might be due to the medication as sumatriptan is known for seizures being a possible side effect, I will let you know what they say next week, I will keep on and on until the answer is found, I feel there is one and Mums are usually right :-)

Thank you for your replies, they all mean a lot, in the mean time he is back to his normal happy self just like every other kid at school............................. until the next time confused

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/25/2009 12:02 PM (GMT -6)   
He is on medications? Hon, I dont mean to come across wrong..but can you please tell me what he is on? Reason why is some medications are actually more harmful for the body. Sometimes the "voices" can be a severe reaction to a medication...and it can be deadly at times. In fact, the sumatriptan can cause all of this.. A doctor wont tell you all this. Do you give the sumatriptan daily? Its meant for when he has a migraine.

Sumatriptan
Neurological Frequent were phonophobia and photophobia. Infrequent were confusion, depression, difficulty concentrating, disturbance of smell, dysarthria, euphoria, facial pain, heat sensitivity, incoordination, lacrimation, monoplegia, sleep disturbance, shivering, syncope, and tremor. Rare were aggressiveness, apathy, bradylogia, cluster headache, convulsions, decreased appetite, drug abuse, dystonic reaction, facial paralysis, hallucinations, hunger, hyperesthesia, hysteria, increased alertness, memory disturbance, neuralgia, paralysis, personality change, phobia, radiculopathy, rigidity, suicide, twitching, agitation, anxiety, depressive disorders, detachment, motor dysfunction, neurotic disorders, psychomotor disorders, taste disturbances, and raised intracranial pressure.

Reason why I knew all this crap on it is it just happens that I am allergic to it, and I have some medical training, enough medical training to make me an "informed patient. Sometimes I tick the MD's off, cuz I will refuse a medication or ask the unexpected questions...before I let them in on my hospitality years lol.
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: Imuran, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


Binks
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/25/2009 12:20 PM (GMT -6)   
Hello smurfy, no he started with the hallucinations ect before the medication was ever started, sumatriptan has now been taken away since he has fitted, possibly this drug was the cause, I only gave it when he had an episode, I call it an episode as I don't know what is happening to him but I nevere gave it every day

Please don't worry about coming across wrong, I am just so relieved to be going through all of this with people who are trying to help

Thank you so much again :-)

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/25/2009 2:33 PM (GMT -6)   
Ok, just a few things that can be possible from what you said: Epilepsy, Diabetic ketoacidosis, cryptococcosis, chronic kidney disease, bipolar disorder, astigmatism, aspirin poisoning, cyanide poisoning, diabetes type 1, aseptic meningitis,, West nile virus, nearsigtedness, reye's syndrome, insulin reaction (hypoglycemia), depression, medication reaction or side effect, encephalities, toons of different forms of epilepsy (temporal lobe, tonic cloninic, grand mal, complex partial seizure), auto immune disease(s), bleeding. Try a full panel bloodwork (do not settle for the range scoring, have them look spefically at the numbers, cuz you can have a slight abnormality and have something wrong but still in "normal range"). Ask for a referral for Neurological pediatrics. Ask for a CAT scan.
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: Imuran, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


Binks
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/26/2009 2:26 AM (GMT -6)   
Thank you Smurfy

I will make a list of all of these things to ask when I go on Thursday :-)

empty, alone & frightened
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/27/2009 8:55 PM (GMT -6)   
Hello Binks, and may God bless you and your son. turn
     Your son needs to see a Pediatric Neurologist AS SOON AS POSSIBLE!!!  Your pediatrician is not trained for this type of situation!  I suffer from severe, dibilitating migraines myself.  My youngest son (17 yrs ) is going through something like a migraine seizure. No one can tell us what's going on either!  The only thing the doctors will agree on is that he has a white spot on his brain ( appears on MRI ) but they can't tell me what it is, or does, or if it's even related to his migraine seizures.
     So, I share your helplessness, love and confusion!  Don't ask your pediatrician about a neurologist, INSIST on one.  If he doesn't comply, then find another pediatrician!  Even better - if your health insurance does not require referrals, find the neurologist yourself!  That's what I had to do.  Word of mouth seems to be a good start.  Do you have any friends that are nurses,  ask them.  Call your hospital and ask for the name of the pediatric neurologist.  You might go through a few doctors but at least you'll learn a little from all of them - and - you won't feel so darn helpless!!
     I wish you good luch and I will prey for your son.
Please keep us posted with any utdates.
 
You're not alone!!!!
 
Empty, alone, & frightened 

Binks
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/28/2009 12:30 AM (GMT -6)   
Hello empty, alone & frightened

I am so sorry for what you are going through, a migraine or seizure or both are what they think my son is going through, You must be worried sick not knowing what the spot is, I have been blessed that the MRI came up clear

I am in the UK so all medical treatment is free and I will ask for a Pediatric Neurologist, I have recently moved and have fallen on our feet with the doctors now as I have another child who has difficulties in another field but up until now did not have the help and support he deserves to have

I will keep you posted but so far so good, no episodes since removing all mushrooms from his contact *fingers crossed* I found it hard to find but in rare cases an allergy to a food can cause sever hallucinations with voices (Oh please God make this be the answer)

empty, alone & frightened
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/28/2009 1:49 PM (GMT -6)   
Hi Binks turn
 
I'll keep you and your son in my prayers!!!  You are correct when you say that allergies, especially food allergies, can make your body do some pretty bizzar things!  I'm illergic to my cats but that is just something I'll suffer through forever as I'll never give them up! 
 
My son had terrible allergies when he was a toddler and asthma.  I had skin tests done twice but nothing showed possitive - not even the test possitive!  His asthma has greatly diminished as he has gotten older (thank the lord).  He rarely has to use his emergency inhaler now.
 
Thanks for your responce and encouragement.  Keep me posted and I'll keep you posted.
 
Empty, alone and frightened cry

tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 1/29/2009 1:33 AM (GMT -6)   
Just wanted to stop in and let you know Im thinking about you Binks

Sara-Migraine/Headache Forum Moderator
 
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Binks
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/29/2009 7:08 AM (GMT -6)   
Empty, alone and frightened, I think maybe you are not so alone anymore hey? :-)

Thank you for your thoughts tysmyboo, he has his appointment soon so will be taking him out of school and taking the hour trip to the hospital, I will keep you all posted, you have all been wonderful and I thank you

empty, alone & frightened
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/29/2009 8:20 PM (GMT -6)   
Thanks Binks.
I wish I didn't feel alone!!!  It's getting worse every day.. the hollowness, emptiness, nothingness.  Thanks for the words, guys, but I don't think you'll be hearing from me again.   May God be with you all!!!
 
Empty, alone and frightened

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/15/2009 10:38 PM (GMT -6)   
Hey, empty, are you all right there? I saw your latest post and am concerned.
Co-Moderator Crohn's Forum.


empty, alone & frightened
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 2/16/2009 12:02 AM (GMT -6)   
Hello, ivy6
Thank you for your concern. I am a little better now. When I posted last, I honestly didn't think I'd see the next day! Thank you again.

empty, alone & frightened
May you all have a better day tomarrow than you did today !
And... thank you for listening !
Empty, alone & frightened
_________________________________________________________
BiPolar and Chronic Depression     Fibromyalgia
Degenerative Arthritis in spine and joints    
Chronic Pain     Migraines


deep fry
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/20/2009 2:29 PM (GMT -6)   
Hello Empty, alone & Frightened

I hope you are feeling better. I might be able to help. Your post on 01/29 sounded like you had just about had it. Please don't give up on yourself. i am 60 years old and have suffered from depression also and I know how frightened and sad and alone you can feel. Try to remember that this is only a temporary feeling. You are not going to feel like this the rest of your life. Think of like a headache when you are this down. Say to your self "this feeling is only temporary , I will only feel this way for a short time and I will get better like a headache does. Get on the road to recovery. See a Dr. and get on some anti depressants. They will take a while before they start working, you will start out on a mild dose and work your way up until you reach a level you and your Dr. feel comfortable with. Most of all stay with it.
I have also had migraines all of my life. The last few years I have not had so many , maybe about 4-5 a year. I consider myself a pretty good authority on migraines as I have educated my self on the subject. I feel that most migraines are either caused by foods or stress. To try and figure out if foods are the culprit write down every thing your son eats, day and night for as long as possible. After a while you will start to see a pattern of probable causes if it is food allergies . In my case my triggers are spicy foods, nitrates are a biggie. Processed deli meats all contain nitrates, chocolate,caffeine, alcohol ane also big triggers for me. This has helped me so much in avoiding migraines. It is not hard to avoid the migraines now that I know what sets them off. Also, if I should eat something that causes these headaches i usually start to suffer the next day not right away. If I eat a big sandwich loaded with nitrates at 3 pm I will start to feel it by the next afternoon. Some other foods to think about. Dill pickles, peppers ,mustard hot sauces like tobacso sauce. Foods that cause a lot of gas, like raw apples, beans. Another thing that will set off a migraine would be being out in the hot sun all afternoon and not eating right. That will definitely set one off. Tobacco use doesn't help either.
As far as stress induced migraines ; I don't know too much about that but it is pretty much self explanatory, I mean like stress is stress, right?



Hope this is helpful
Deep fry.
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