chronicclusterheadaches.co.uk

Jill · Posted: Thu Apr 02, 2009 7:28 am Post subject: What to do...

Hi you all....

I have been hesitant in posting this because....well...I just was and am. But I thought that maybe writing to you guys would help or at least let me get it out of my head and go from there. Does that make sense? No one has to respond to this, I just needed to tell someone or something...

Marty (my husband) has started his CH cycle and it is the worst one that I have seen him go through.. I think that it is the worst one since we have been together actually which is now six years. He usually gets them every two years for three months but they have gotten shorter and not so bad, until this time.

Now he is getting hit a lot, especially at night which is about every hour. I can see how tired he is and I hate to see him pace around and hurt... it hurts me to know that I cannot help him.

We did have a new medication here, Sandmigran, which is supposed to be good for Hortons Syndrom (clusters) and I got him to start that and I think that it is starting to help but I am not sure. He is still getting hit a lot but the hits are becoming shorter for the most part. I just wish that there would not be so many of them.

It is a strange thing for both of us to have CH because I know the pain that he describes and I think that that hurts even more because there is a different understanding there. I want to take them from him just as he wants to take them from me... it gets very interesting when we both get hit at the same time.

Anyways, I am not sure what to do... I guess there is nothing that I can do. Sometimes I wonder if being episodic is not sometimes worse because you kind of let yourself forget what the pain is like and it is hard when a tough cycle comes back after so long. CH pain sucks big time no matter what!

I am leaving to go to the US to see my mom this Sunday and will be gone for almost three weeks. During the time that I am going, it will be our wedding anniversary (first one) and he has surgery that day too. Nothing major but still anesthesia (not sure how to spell that) but home the same day. If you do not mind, can you send some good vibes his way!

That was all. Thanks for letting me write this today... that helps. I have to add that I admire everyone for their support to others whether you have CH or not because it is not easy to witness or to even hear when someone is having a bad day... So thank you everyone.

Hugs to all,
Jill
_________________
What lies behind us and what lies before us are small matters compared to what lies within us.
-Ralph Waldo Emerson

phil h · Posted: Thu Apr 02, 2009 8:03 am Post subject: Sorry

Jill , I'm sending good vibes , prayers and angels to both of you . Hang on tight , both of you . Love , phil h

_________________
"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. " Frank Capra

Ike · Posted: Thu Apr 02, 2009 9:30 pm Post subject:

Jill,
You don't need to worry about posting anything here! Most of the time i think about pulling the site altogether but it's posts like this that keep it up ! i think, very little posts, only a handful of members why would anyone come here when there are other places with instant responces and lots more advice. but then a post like yours comes up and i remember why it's here. To be honest everything i can say you already know, just think to your self what you want and need while your getting hit and try to relay that to Marty, I truly think it's harder to suport then to have ch. You and marty both have my prayers and all the good vibes ive got right now going under was hell for me with ch pray it's not the same for Marty. Love and hugs to you both. And please please come back often and let us know how things are getting on ok?
Ike
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

Jill · Posted: Fri Apr 03, 2009 8:30 am Post subject:

Thanks Phil and Ike... you guys mean a lot to me.. just so you know!

We seem to be managing right now, he was in a sour mood yesterday which I understand but hate to see. He sounds better this morning so that is good news and we have plans to go out to a park nearby to take some pictures on Saturday so that will be nice too.

I am very worried about him going under and I think that he is too. The nurse told us that once you start to wake up, they give you coffee right away and make you get up to walk which is way different than in the US but also good. He is going to advise them on the headaches and so long as he has coffee than he should be okay. I guess that time will have to tell though.

He has had cycles with me before but this one is worse than I have seen and I know what he needs when getting hit but it is hard to watch and be helpless. And I know that when it ends, we can cuddle again and relax. I hate CH so much, which I am sure that you can relate to and understand!

Anyways, Ike.. I hope that you do not take down this site as I really like it and though I may not post here a lot, I come a lot. I am not sure what happened to CH.com but it is so different and is missing something that this site does have. We will just have to make it a point of coming here more often to post, huh?

Much love to all of you and thank you so much for everything,

Jill

PS Many hugs too.

_________________
What lies behind us and what lies before us are small matters compared to what lies within us.
-Ralph Waldo Emerson

Annette · Posted: Fri Apr 03, 2009 11:17 pm Post subject:

Jill ,

I am sorry to hear both of you are going through a rough patch.

It brings me back to those days when Daniel was getting hit 8-10 times a day. The neuro said to us " " My God, thats a lot of hits per day, thats not possible ". Well yeah it sure was possible and life stood still until the hits subsided.

When you are in the midst of it it seems like it will never end, but it always does ... Hang in there Jill, it will end.

Sending vibes and hugs and love and prayers and a few bombs to blow up this damn beast !!