uncle-cluster wrote on Feb 13^th, 2009 at 3:30pm:


Uncle,

If I read your post correctly....How many of your family have CH?  Life is a crap shoot and nobody said there are any guarantees in life.  If your fear of having children is any pain they may have to go through then I can assure you they will and the chances are much higher they will get hit by a bus or have cancer than they are to suffer from CH.  Sorry but them's the facts.

-P.

'btw-thank you Ellick for your honest reply
its how I feel , it strengthens my sadness… but I’m a realist.


I understand your worry but you are basing your position on an hypothesis.

Dont forget that treatment now is allowing many of us to have some control. I would agree with some of the other views that CH should not control your life.

I can say this easily because I have many children and grandchildren so I have the luxury of not being in your position.

You have time (in age terms) to research this and make a  more informed decision before reaching an age where it unfair to become a parent (for me that is no later than 45).

I think it is difficult to say which route is right or wrong.

In answer to you hypothetical question about sexually transmitting CH to a partner, I would not take the risk unless safe sex could guarantee no transmission.

I hope your struggle with this comes to a conclusion which gives you peace of mind.

Ellick

If I were to go by this reasoning, then I would have probably been doomed from the beginning for a chance at a wonderful life.  If I went by this reasoning, I would have said "no" when my husband asked me to marry him.  I would also never had known the joy of having children either.  I would have been sentenced to a life of misery and loneliness because I would have never taken the risk at LIFE.

There are blessings and curses to having CH, but to lay down defeated because there is a very small chance of passing it on, will never be one of my options.  You know why?  Because I am just as worthy of a happy life as the next person.

JMO

uncle-cluster wrote on Feb 14^th, 2009 at 9:18am:

You are surprised that we all don't put our own selfish needs on the backburner just because there might be a slim chance of passing down CH's to one of our children?

Sorry, I don't mean to sound callous, but I find that unrealistic.

uncle-cluster wrote on Feb 14^th, 2009 at 9:18am:



a) there are different levels of CH…  I know where I am (look up chronic you’ll see my picture)
     so when we talk about the the “what if”, its also a question of to what degree.
b) I tried to give an example on the first page of how /what would it be like if there was that really really small chance of giving CH over to your spouse… but if he caught it… wow … what a ride they would be in for 
That was an example of possibly giving & catching CH by agreement 

Ellick wrote on Feb 13^th, 2009 at 5:57pm:


2 funny things…
a) you mean its unfair to the kid (after age 45)… my whole dissection here is about unfairness to the kid
(I know that age you have control over but you understand…)
b) you say you would not take the risk on the sexual transmitted CH (I just invented)
so you would probably take into consideration what chance you have of catching it…
if your spouse had a 1-10 % chance of giving it to you … 
maybe you would look for another girl…
note! Even if you stayed, it would be through your informed decision & agreement...not something forced on you 

and YES… I have a lot more to research & think about

Hello, My mother had migraines but that is as far as i could trace this back. I shiver and get a cold chill down my spine everytime one of my kid's say " dad i got a headache ".


                             Challening, More assertive.. Coach bill.

'2 funny things…
a) you mean its unfair to the kid (after age 45)… my whole dissection here is about unfairness to the kid
(I know that age you have control over but you understand…)
b) you say you would not take the risk on the sexual transmitted CH (I just invented)
so you would probably take into consideration what chance you have of catching it…
if your spouse had a 1-10 % chance of giving it to you … 
maybe you would look for another girl…

note! Even if you stayed, it would be through your informed decision & agreement...not something forced on you  '

a) Yes, I am saying exactly that. I had my youngest child when I was 45. If I live to the current predicted levels he will be 30 when I die. I also considered how fit I would need to be whilst he was going through adolescence. Outside of CH I am quite fit but CH means I am always regaining and not maintaining. It takes a perseverance that gets harder the older you get. I am 58 now.

b) If I loved someone who could transmit CH to me, I would probably stick with and try to work around it. Relationships are a risk whatever you do. There are a lot of people who for example live with a partner who has HIV.

BTW my youngest son was born prematurely at 24 weeks. He survived but has mild ataxic Cerebral Palsy. We had no way of knowing that would happen. He was in hospital for 6 months and has had huge input from us all as a family. I think the chance of that happening is much higher than getting CH.
If we had thought he would be that premature and end up disabled we would have most likely decided not to have any more children.  Since that time and due to my age I have made sure I cannot have any more.

On the other hand, he plays the piano, comes to martial arts training with me and is very popular at 'mainstream school' with teachers and friends. He has a good quality of life and adapts to his diability in a way that only children can. Simple acceptance.

I don't think the facts in this argument lie down that easily in any area and at the end of the day you have to go with your true feelings and live with the outcome.

Love, kindness and time overides much including CH.

Ellick

seasonalboomer wrote on Feb 16^th, 2009 at 10:59am:

thanks for...just understanding

My father was an episodic sufferer, but went through several years when he was very close to being considered chronic. He suffered quite badly and his hits were very intrusive in his life. He was treated with the whole list - some things worked better than others.

I am episodic. Used to be very predictable. Several years when they were very dark times. Not so much now, a couple cycles a year, but since arriving here a few years ago have the tools I need to keep the beast at a dull roar. Cluster headache has, for me, become something I simply deal with. I do know that I'm lucky in this respect.

My dad like me has episodic CH that flip flops with severe migrianes.

He taught me that it does not have to win, that you can set goals and go for them, he backed my corner at school when I was 'always having headaches' because he knew what it was like. He showed me you can be a great parent even with b.a. pain   all he ever asked of me was to be left alone to scream with the bad heads  and bring him a coffee after. I used to hide his car keys if he had taken what we called his 'happy pills'. Headaches were only a small part of being a family for us.

He is one person I can share black humour and joke with who does understand when its horrible and gives me a hand with my kids when I have not had enough sleep to cope. He also encourages me to keep going when it gets tough and having seen how ill his heads can make him he is a good role model to do that.
I just wish he could have had the drugs that he has now back then instead of struggling so much.

My dad did not just give me CH he also gave me his intellect, his warped sense of humour and his curiosity about the world and a grasp of how good families can be.

Out of my four children two have migraine; one has 3 attacks a month and the other once every four months. I did seek genetic counselling but that had more to do with worries over a cousin with Prader Willi [low], VwB type 1 [1:4 risk] and autism [1:7 risk]. I never worried about CH as compared to the other problems it was not a real risk.

So far none are showing any signs of CH and they are now teens'.

My dad is the only person in my wider family I know who also has CH.


Being a parent is a tough job to take on. It is easier shared between two.
You cannot predict what hand you will be dealt with even with genetic counselling merely the possible risks.
You do have to deal with learning on the job but if you have the support and encouragement from a loving partner life can have more high points that low.

Uncle-Cluster,

I had my son when i was 23. I didnt know i had CH ( thought it was just MASSIVE sinus infections).
My son is now ten and has CH.
No other immediate family members have ever had or known of CH. I can see your point of not wanting to pass it down, but i also question what if my son who suffers from these will become a doctor and found the absolute cure? what if?
-Kim