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Supporter's Corner >> Children and Cluster's >> 2nd time round for 10 year old
(Message started by: Puddleduck on Apr 9th, 2003, 6:44am)

Title: 2nd time round for 10 year old
Post by Puddleduck on Apr 9th, 2003, 6:44am
My daughter is just experiencing her second cluster, the first time when she was 7 it was diagnosed as raeders's syndrome (she had the drooped eyelid and prolounged on and off headaches). The first time round she had a normal MRI and we were told to give her NSAID's and paracetomal.

3 years later  she was again woken in the night, very distressed and vomiting. The headaches have continued for 8 days now (getting less severe) and she has the eyelid  palsy again with double vision and dizziness. Her docter referred her to hospital but the peadeatrician who saw her last time was not particularly bothered and said hopefully it would settle down like last time! This might take 2 - 3 months.  We have been told to give her paracetamol and ibuprofen - she is lethargic and depressed and nothing like her normal bright bubbly and energetic personality.  
I tried sending her back to school for half days, but she was exhausted and woke again this morning with a headache so I have kept her home today. and told her school that this could be the pattern for quite some time.

I would love to hear from anyone who thinks I should be pushing for more proactive treatment and of which kind.

Hope to hear from you.

Title: Re: 2nd time round for 10 year old
Post by Margi on Apr 9th, 2003, 10:01am
sorry to hear your girl is in pain.  Please consider asking your neuro for a prescription for oxygen for her?  It's the least  invasive of the cluster treatments and it really CAN be a huge help in aborting the attacks before they take hold of her.

Title: Re: 2nd time round for 10 year old
Post by Drk^Angel on Apr 19th, 2003, 7:57pm
I am so sorry to hear about the Hell your daughter must go through.  Doctors can be so difficult to handle when you're dealing with a child with headaches.  They seem to have difficultly understanding that children can be in pain or something.  At least most doctors do admit now that children can get headaches, but I think they probably still don't believe it can be that bad (then again, most regular doctors don't believe clusters can be that bad).

I'd recommend pushing to get the help your daughter deserves.  If the pediatrician don't want to help, find another one, or go to a neurologist.  Check to see if there's a pediatric neurologist in your area, and see if you can take her there.  Don't just let a few less than helpful doctors just blow off your concerns and declare everything will be okay eventually.  Sure... Your daughter headaches may go into remission again eventuall, but that doesn't mean that they don't hurt right now.  Doctors can be just so worthless at times.

I hope you and your daughter find a goo ddoctor soon, who is willing to try to help.  Good luck!

PFDAN.................................. Drk^Angel

Title: Re: 2nd time round for 10 year old
Post by cathy on Apr 21st, 2003, 11:49am

Hi sorry to hear about the distress and pain your daughter is going through, Drk^Angel has offered you some good advice I hope you take it....wishing your daughter PF times ahead. Let us know how you get on.

Cathy  :)

Title: Re: 2nd time round for 10 year old
Post by bonner9 on Jul 31st, 2003, 3:02pm
My name is Mark, and I'm from Boston, MA..I've been suffering from cluster head aches now for 12 years...I'm 31 first experience was when I was in college...I didn't know what this extremely sharp, dibilitating and crippling pain was I was experiencing on the right side of my head, behind my right eye....only last for about an average of one hour for three straight days...I went for a cat- scan as I feared for my life the pain was so brutal and overwhleming..nothing showed...a few years later, now in my mid 20's, had another bout, still unaware what I was experiencing..just thought it was really severe headaches...again the excrutiating pain lasted a few days, acouple of hours a wasn't until April 2003 when I got the worst of it...the clusters were back, and this time, I thought I was going to die...the pain had elevated to a point where I was beating my head against my driveway, wall, car bumber anything to make the pain stop....I was getting 4-6 clusters a day and they were averaging 2 hours each time...i was so helpless, crippled and experiencing the WORST pain life may have to offer(physically)...I couldn't sleep, work or conduct my social life...I went in for my 2nd catscan in 12 years again nothing, but my doctor did finally diagnos me with clusters...some medication that I found helpful is Verapomil and Axert(both have websites)...but, what really did it for me was pure saved my life(so to speak). Whenever I felt a cluster coming on, I would go directly to my o2 tank, put the mask over my face, breath in deeply and within 10 minutes the cluster was all I use is the other medication works absolute wonders...I know it will help your daughter if she's not already on it...I know the pain I'm in during a cluster and I would not wish it upon my worst enemy, so I can only imagine what your little girl is going through...hope this helps!

Title: Re: 2nd time round for 10 year old
Post by Patrick_A on Aug 2nd, 2003, 7:47pm
I am so sorry to hear about your child suffering with Ch's. I know you have come to this site for information and it has plenty. I hope you are able to find help.
Everytime i come to this section of the CH message board, it brings tears to my eyes. I wish i could help!!!


Title: Re: 2nd time round for 10 year old
Post by kbbogo1 on Aug 10th, 2003, 12:46pm
Poor baby - it's not fair!  I like the oxygen suggestion and hope you have success with it.  Keep an eye on her with the depression - constantly reminding her of how brave she is to be handling this so well.  I too, have a very hard time with zombie/depression/being lethargic -only during my cluster cycle.  With me anyway, the depression is not where I feel sorry for myself at all - but an overall sadness - just don't care about anything.  Don't take it personally - it messes me up as an adult - can't imagine what it does to a child.  Also, when I am in a cycle, I DEFINATELY don't feel like explaining it to others - only for them to tell me that they have "migraines" too.  They have absolutely no clue!  I think you are doing great supporting her and keep trying to find an understanding doctor.  You might want her to look at this site too so she can visit with us.  We would love to hear from her and offer her our support.  I found this site about a year and a half ago - it was the best day of my life!


Title: Re: 2nd time round for 10 year old
Post by thomas on Nov 24th, 2003, 3:03pm
God I hate that children have to endure this.  It rips me apart just thinking about it.  I know it's cliche but, if I could take their pain for myself, I would in a heartbeat.

Title: Re: 2nd time round for 10 year old
Post by Paigelle on Nov 25th, 2003, 8:09am
I have had CH since I was 10 also.  Of course at that time the Dr assumed that I just didn't want to go to school and I was rebelling against everything.  "Children this age don't get HA likes this."  I remember that comment so well!  

Go to the OUCH Website and read everything.  There is some wonderful information that you can print and take to your child's teachers and Dr.  There is also resources with the information about children getting CH.  Try this link

Title: Re: 2nd time round for 10 year old
Post by bonner9 on Nov 25th, 2003, 12:12pm

If you haven't already been directed to use oxygen, PLEASE DO!!! My story is on the website...pure oxygen is the only remedy for other meds needed...when I feel a cluster appraching, I go to my o2 tank, put the mask over my face and literally within 10 minutes the cluster has vanished. Ask the pediatrician about oxygen. Hope this helps.

Title: Re: 2nd time round for 10 year old
Post by Margi on Nov 25th, 2003, 1:35pm
Just a reminder here, folks....this post was originally made in April of this year.  This user may not be around anymore and, therefore, not getting your responses.

things don't move as fast over here as they do on the General Section, so sometimes we are posting to stuff that is months old.  I haven't seen Puddleduck here since this original post.

Not trying to discourage anyone from posting, please don't get me wrong.  Just don't want you to get your hopes up for a response from someone who may have left months ago.

Title: Re: 2nd time round for 10 year old
Post by mima on Oct 13th, 2004, 3:02pm
Thanks to all above responses - I have had to reregister as had completely forgot my username and password!  - however my daughter went into remission with her last bout of headaches but they have again returned.

I had a very frustrated visit to her GP, was reduced to tears as I tried to explain how I could not bear for my daughter to be in such pain. He has prescribed her IMIGRAN, i cannot find any reference on this site but do know that it is usually prescribed for classic migraine and only to 18+.

I am going back in a couple of days to see how things are going and would like to push for oxygen - however the GP really couldn't see what my problem was as "she has only had 3 clusters in 5 years" and has already told me how expensive the Imigran tablets are.

It truly breaks my heart to see how much pain and how subdued she becomes and would really appreciate any response from people in the UK to compare their experiences with the NHS

Title: Re: 2nd time round for 10 year old
Post by Drk^Angel on Oct 17th, 2004, 8:26pm
Imigran = Imitrex... Very common medication for CH sufferers.  Dunno how well the tablets will do (most CHers are prescribed injections).  Good luck to you and your daughter.  Hopefully y'all will be able to get the O2 your daughter needs and deserves soon.

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