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tiredmom
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13 year old sufferer
« on: Apr 1st, 2002, 8:05am »
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Hi,
My daughter Tina had a stroke at 9 months.  She ended up with epilepsy and brain damage.  She is also deaf.  In the last year or year and a half she has straated having massive headaches.  They always start in the wee hours of the night.  They are intense they last anywhere from two hours to 6 hours.  The are accompanied by vomiting and bowel movements.  She cannot tolerate light.  The pain hits in waves.  They look like they are a cross between a migraine and a cluster because they will hit three to five nights in a row.  She cannot describe any sensations to me.  She doesnt have the vocabulary.  How can these headaches be properly diagnosed without her input?  Are they a by-product of the stroke?  She is already taking two different medications for the epilepsy, here choices are restricted as to what I can give her.  Where can I find help?  Should I try bringing her to the hospital when she is in the middle of one?  (probably very messy it's a good 45 minute drive to the hospital)
 
Any help or advise would be appreciated.
 
Tired mom
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Re: 13 year old sufferer
« Reply #1 on: Apr 1st, 2002, 8:57am »
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I'm so sorry to hear of what you and your daughter go through.  It must be so frustrating for both of you for her not to be able to tell you what is happening to her.
 
Are you in touch with a good neurologist?  It really sounds as if you should be.  I understand that it would be difficult to transport her in the throes of an attack, but can you get her in to see someone when she is NOT being attacked to describe her symptoms to a cluster-knowledgeable neuro?  If you go to the OUCH website button on the left here, in the menus above the map, there is a list of doctors by area that our folks here have visited.  It's in the first menu on the left, called RECOMMENDED DOCTORS.
 
If you are unable to do that, -- to physical get there to see a neuro, try calling the office and getting the email address for the doctor AND his secretary or nurse.  Most cluster-friendly doctors recognize the urgency of clusters and will do their best to accomodate us, especially with a well-worded email.  I would suggest just copying the post you just left here for us.
 
Is she on any meds that could be causing seizures of any kind?  Becoming liquid at both ends is not real common in clusters, but a small number of folks do vomit.  Light sensisity, as well, is not the norm, but it can happen.  Poor baby, that must be so scary for her.
 
Please keep us informed as to your progress, Mom - we're thinking about you big time, here.
 
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Margi
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Re: 13 year old sufferer
« Reply #2 on: Apr 5th, 2002, 12:27am »
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I wish I had some answers for you but I don't.  I just wanted to say I will keep both your daughter and you in my thoughts...I started Ch's at 15 and even with a good vocabulary I couldn't make people understand...your daughter is lucky to have a mother who is trying to be so proactive....Good Luck.
 
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Re: 13 year old sufferer
« Reply #3 on: Apr 5th, 2002, 9:52am »
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Dear tiredmom,
 
You are in my thoughts and prayers.  Talk to your daugter's doctor and find good neurlogist.  It's a long road.  My heart goes out to you.  Kim
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Re: 13 year old sufferer
« Reply #4 on: Apr 18th, 2002, 4:56pm »
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My first thought is "Christ,what can a child do wrong to deserve cluster" if thats what she`s has.My best advice is to get her to a good neurologist as soon as possible.
Its the only way,as can see it.Believe me when i say that my heart and mind is with you all the way.
 
Yours Svenn "of Norway"
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Re: 13 year old sufferer
« Reply #5 on: May 6th, 2002, 9:22pm »
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I have to agree.. find a way to contact a GOOD neuro...either face to face or via e mail. Mine started when I was 14 and no one understood..cept my mom. You may want to consider calling 911 when she is full blown..not only can they help her faster (02)..but can transport her twice as fast to the ER where you can ask for a neuro to see her, especially if u have documented or patterned these attacks....Please know you & your daughter are in my thoughts and prayers.
You are loved..
~Shari~
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Re: 13 year old sufferer
« Reply #6 on: Jun 28th, 2002, 8:35pm »
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Tired Mom,
I as well am so sorry for your situation, Your child has had such a hard hand dealt to her already ,then to develope severe chronic headaches on top of everything else is horrible, I have to wonder about the loss of bowl control for that is more symptomatic of a seizure, so let me ask you to watch a few things until you can get her to a Doctor! A Good Neurologist that is trained in children with special needs.
   #1. During sleep how does she sleep, does she cover her face with the blanket, if so this might be reducing the intake of enough oxygen which can trigger headaches!
    #2 Does she grit her teeth, if so this could be triggering headaches also, as she would be extremely tense in her facial muscular area and thus possible be triggering headaches similar to CPH[url]Chronic Paroxysmal Hemicrania (CPH) [/url]
    # 3 Does she suffer from sleep apneia, Stops breathing for prolonged periods then gasps for breath?
    #4 How hot is her room, try to keep her a cool as possible as overheating also might trigger Stress,tension and migraine headaches.
    #5  What medications does she take if any, are they for a cardiac condition, as poor circulation of the blood by the Heart also causes severe headaches!
     #6 Does she push her head against the head board during the night, is certain circumstances this can cut of blood flow to the brain and trigger not only headaches but seizures as well!
  I feel the Best thing you can do is try to get her to a Qualified Pedatric Specialist that would look at all of these factors and many more and hopefully be able to diagnose her problem.
     I can't imagine how hard it must be   to not be able to communicate clearly with her, it's people like yourself and your daughter that make me feel ashamed that I have ever felt sorry or pitifull for my own conditions!  
    You are a wonderful, Brave soul that has taken a Great step in finding this Board, however we are all just sufferers and can share what works for us and what triggers our attacks, we cannot determine your Daughters problems but we can and will offer all the support you can use!
    Bless you and Good luck, Please don't delay, I would start at the Mayo Clinic if I were you, also Cleveland Clinics have a Great Database of expert Doctors! Pappy
 

« Last Edit: Jun 28th, 2002, 8:50pm by sailpappy » IP Logged
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Re: 13 year old sufferer
« Reply #7 on: Aug 5th, 2002, 9:34pm »
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I can't top what Pappy said.  Although I've suffered for 24 years, I can't begin to give advice.  I remember being 13 with CH, and no one understood.  I agree with everyone though, cold air, ice, 911 with oxygen, and a neuro you can trust.
 
My prayers are with you and your daughter.
 
Keep your chin up.
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tiredmom
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Re: 13 year old sufferer
« Reply #8 on: Aug 6th, 2002, 7:26am »
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Hi,
 
Sorry it took so long to reply.  (lost my password).  I want to thank everyone who replied with such kind wishes.  Just to recap.  My daughter Tina is doing much better.  Her last attack coincided with a scheduled appointment with her neurologist.  He also happens to be the chief Neurologist for the local children's hospital.  He was able to get us through this attack and then we started with a medication called 'Sandomigran'.
 
Many people told me it wasnt going to work.  They knew someone who had taken it and it didn't work for them.  I told them to buzz off that we were going to give it a try.
 
Well after almost two months I am thrilled to report that although Tina has had three attacks they could no longer be called clusters and are much more like a mild migraine.  She even got to go to summer camp for 10 whole days and nights!  We found one trigger so far THE WEATHER.  I was shocked to find out that many of the other triggers are things Tina does.  She does grind her teeth, she does sleep with her head mostly covered.  
 
We are keeping a close eye on those possible triggers.  
 
Thank you again for your support.  You have no idea what a comfort it was to routinely have good vibes sent your way when you start to think your the only one out there with these kinds of problems.
 
Thank you all
 
Not so tired mom
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Re: 13 year old sufferer
« Reply #9 on: Aug 6th, 2002, 8:00pm »
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You are a wonderful mom and your daughter is luckey to have one like you.
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