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(Message started by: splashmountain on Mar 3^rd, 2007, 10:01pm)

Title: new to board
Post by splashmountain on Mar 3^rd, 2007, 10:01pm

Hi my name is Francis. I have had cluster ch for about 18 years I just got off a cycle of about 5 weeks. What I am now worried about is my 9 year old daughter has been cmplaining alot about headaches. Any advice would be appreciated.

Title: Re: new to board
Post by Skyhawk5 on Mar 3^rd, 2007, 10:31pm

Welcome to the board Francis! I've had CH for over 18 yrs. too and am in cycle now. Others on the site with more info will be along soon I'm sure. In the meantime.

It is said to be somewhat rare but not unheard of that another family member have CH. There are several members of the board that do have family with it. But the percentage isn't large. My prayers are with you.
PFDN, Skyhawk

Title: Re: new to board
Post by Bob_Johnson on Mar 4^th, 2007, 12:54pm

Francis, please don't make the mistake of assuming the worst, that she has clusters.

Watchful waiting is useful until you can see some kind of pattern emerging which you then share with her doc. Her social and physical development is at a stage when all sorts of issues could be the causes of her headaches. Might want to check withs her school staff to see if some social factors may be pressuring her.

Title: Re: new to board
Post by BB on Mar 4^th, 2007, 8:00pm

Hello

Sorry to hear your daughter has headaches but Bob is right, dont panic yet. Its common for kids to have some form of headaches although I can understand how worried you must be.

There is an element of genetic links to CH but its not a strong link and more often than not there is only one CHer on the whole extended families.

Helen LeLimey is an expert on this, she will come along and give you some great advice soon.

In the mean time, the best thing to do would be to keep calm, write a headache diary for your daughter noting when, how long, how often, characteristics of pain, whether aspirin helps etc and takes her to see a doctor/specialist for a check up.

All the best

Annette

Title: Re: new to board
Post by LeLimey on Mar 5^th, 2007, 4:41am

Hello Francis,

As Annette has said, a headache diary is a must, make a note of how long they last, how she reacts, what helps and any potential triggers such as food or exercise etc. The advice to check with teachers if there is anything going on at school too is sound advice

As the others have said, try not to worry. I know myself how scary it is. You need to see a headache specialist neuro for an accurate diagnosis though which is where the diary will help.

There are over 600 types of headache and many symptoms cross differing types so it really does take an expert in the HA field to help. Bear in mind kids react differently to pain too which can make it look different so noting all the other stuff is really of paramount importance.

I can't stress enough how important it is to keep that diary, meds for one headache type can literally kill if given to someone with a different HA type so you can see why second guessing can be dangerous.

Good luck, we're here any time you want to vent or you feel worried about either your daughter OR yourself okay? We'll help all we can and thats a promise!

Helen

Title: Re: new to board
Post by cynjeep89 on Mar 5^th, 2007, 7:34am

Francis,

Hello from one Delawarean to another. I'm up here in Wilmington so we are not far from each other at all.

I sent you a pm over the weekend so when you have a chance, check it out.

Hope to hear from you soon.

Cyn

Title: Re: new to board
Post by swimchica623 on Mar 5^th, 2007, 10:45am

Hello! Another neighbor here. Yay Delmarva. Sorry you had to come here but its a real good place to be. And echos about what everyone said about your daughter...also if she was getting clusters wouldn't be you able to tell? I think it would be a bit more than "complaining about headaches".... so don't think the worst.
Welcome to the boards. :-)
Lisa

Title: Re: new to board
Post by stevec on Mar 5^th, 2007, 12:21pm

Hello Francis,

I agree with all of the replies. There is a lot of good information on this board! It would actually be uncommon for a 9 y/o girl to be having CH's as they typically start a few years later and of course are more common in males. Other types of headaches are MUCH more common in girls of that age. I have CH's, and I also happen to have a father and a sister who have migraines. As others have stated, keep a log of the headaches including location, severity, when it occurred, what triggered it, and what if anything it responded to. This information will be quite valuable to you and your physician in the future in diagnosis and treatment. Best wishes and good luck!

Steve

Title: Re: new to board
Post by Rosybabe on Mar 7^th, 2007, 1:17pm

Hi!

Sorry to hear about your daughter..have you think about her copying you?..sometimes children wants to act like the parents..my 5 years old little girl fakes headaches after I got mine, just to get the attention, :P
she even goes and gets the ice pack and goes to bed..I am not saying that your daughter is faking it but it is a possibility...could also be eyesight related..she may need glasses..The first thing the neuro told me was to check my eye prescription when I was 12 years old..
Just keep and eye on her and yes a diary is a very good aproach..

Good Luck!!

Title: Re: new to board
Post by KillerQueen on Mar 8^th, 2007, 9:11am

Hey...I'm new...I was just diagnosed a few weeks ago (after countless MRIs, countless sinus infection misdiagnoses and countless sleepless nights). I'm trying the prednisone thing, but I'm not really happy with the way the steroids make me feel (and so far, I had 4 days' remission and then they returned, so I don't know how well it's working).

I'm glad to see there is a forum where people know and understand this pain. I'm a "drama queen" so it's hard to get people to take me seriously when I tell them how bad this actually is. I look forward to getting to know you all!

Title: Re: new to board
Post by KillerQueen on Mar 8^th, 2007, 9:26am

on 03/07/07 at 13:17:19, Rosybabe wrote:

I've noticed lately that my 4 and 5 year old girls do the same thing. Luckily mine hit at night and are gone typically by 6AM (just in time to go to work after a sleepless night) but they've heard me talking about how I was up all night with a headache. They'd never complained of a headache until they heard me talking about mine...I'm sure there's a lot of truth to that!

Also, I have a quick question...Do you think that CHs can cause sinus infections? I notice that, after a bad night of headaches, I have a slight (in comparison...it's bearable anyway, compared to what I had the night before) residual headache the next day, combined with the stuffiness on that side of my head, which I understand is common. Think the stuffiness on that side can lead to a residual sinus infection? Yeah, I haven't slept for days so I'm just rambling... ::)

Title: Re: new to board
Post by Rosybabe on Mar 8^th, 2007, 9:12pm

no, I don't think I heard about sinus infections but I know very well about the "hangover"...
You get this one after several days of non sleep, high kip's CH's, stress , etc..
They do hurt but most like a shadow of the real one..
I also tend to get sick because I get my CH's at midnight and I get very warm and put ice on my head and all this mess just bring on head colds, I won't call them sinus infections..
Hope you cycle goes away soon..
PFD for you!!