chronicclusterheadaches.co.uk

Ike · Posted: Mon Oct 05, 2009 6:44 pm Post subject: Doc

At long last im seeing my neuro again ! i only get to see him once every 3months but this time it had to be put off last time so its been almost 5 months since ive seen him.

Not sure if i want another GONB done they are great for 10days or more but god when they come back after it's like the beast is punishing me and he really goes for it !!
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

phil h · Posted: Tue Oct 06, 2009 1:15 am Post subject:

Do it ..... One never knows how long they will last . 10 days pf is worth the fury of the beast afterwards .

_________________
"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

Shedz · Posted: Tue Oct 06, 2009 9:43 pm Post subject:

can't argue wiv that bro,surely any pf time is worth going for.....
_________________
If it don't kill me,it'll make me stronger???
I push my fingers into my eyes, Its the only thing that slowly stops the ache......
http://www.youtube.com/watch?v=Xps7AM8HbjE

phil h · Posted: Wed Oct 07, 2009 2:23 am Post subject:

Do that is a good B PLAN to control group as A PLAN......A and B together or the nerve block , leading you into a control group ............I can get trigger points again....He rethought it and it's all good.... no chart.... Best of luck Ike !
_________________
"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

Shedz · Posted: Wed Oct 07, 2009 10:07 am Post subject:

Hope the visit wiv the Doc goes ok for ya bro

_________________
If it don't kill me,it'll make me stronger???
I push my fingers into my eyes, Its the only thing that slowly stops the ache......
http://www.youtube.com/watch?v=Xps7AM8HbjE

Ike · Posted: Wed Oct 07, 2009 3:50 pm Post subject:

Thank you guys, It went really well Best part was manjit was running almost 2hours late !! BUT that gave me chance to meet a guy in the waiting room (hoping he will join here) He was a chronic clusterhead and had been through the same as me all the same meds GONB's and everything.. Was good to chat with someone face to face that really knows ! i know you all know but meeting him was well worth the 2hr wait. Ok Im now gonna wait to have DHE and ive got a new drug to try, They said they would keep the worst till last and this one is a bit nasty but could work well for some, Also there is a pill form of DHE to try aswell.. I explained with Riley a week in hospital would be really hard and this pill seems more up my street but DHE is still on the cards whenever i ask for it.

Ive now got to go see my doc and fill her in on the meds and she will do a script for them to start tomorrow. Some strong shadows today but at least i didn't get hit on the train like every other time ... I really hate london for that
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

phil h · Posted: Wed Oct 07, 2009 6:46 pm Post subject:

_________________
"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

Shedz · Posted: Thu Oct 08, 2009 12:16 pm Post subject:

Excellent news mate, whats the nasty side of what they're gonna try on you???
_________________
If it don't kill me,it'll make me stronger???
I push my fingers into my eyes, Its the only thing that slowly stops the ache......
http://www.youtube.com/watch?v=Xps7AM8HbjE

Ike · Posted: Thu Oct 08, 2009 5:15 pm Post subject:

Side effetcs,
being sick, feeling sick, falling over, not being able to stand well as feel off balance. and severe mental slowing and trouble concentrating..

Then the normal stuff, headaches,constipation and all the normal stuff you get from any pill we take lol, Neuro gave a long warning about side effects lol saying they saved this drug til last as most cant cope with it, But it has good results with chronic's if they can cope with efects
_________________
If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

phil h · Posted: Fri Oct 09, 2009 9:51 pm Post subject:

Yeah , I got all that , you do too . Not to mention headaches..................
_________________
"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

Sherri · Posted: Fri Oct 09, 2009 10:46 pm Post subject:

Ike

You have my prayers, I hope you get relief. Damn side effects. I've stopped meds that seemed to help due to the horrendous side effects

Im thinking of you...always. If you're able, check in with us.

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

phil h · Posted: Sat Oct 10, 2009 3:51 pm Post subject:

Hope you are feeling better . Don't focus on possilbe side effects .......Take and if you can't tolerate it ,f it... Good luck. We never know what will work they tell us !

_________________
"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

Sherri · Posted: Sat Oct 10, 2009 7:08 pm Post subject:

Ike

In no way am I implying you stop meds. If it's intolerable,well, there's not much of a choice.

I go out of my mind from Immitrex, Topomax...even Sudafed. I feel like Im crawling out of my skin, having a heart attack and can't string a sentence together....Cafergot gives me tremors and severe nausea...I cant hold a pen-it's like I have Parkisons Disease and Im a second from vomitting to the point it keeps me awake.

Some things you have to weigh the positive and the negative...if you become non-functional from the meds you're on, well, it's just about the same as a hit. I wish you the best, hope you're able to function and you get relief. Love You DON'T READ THE PAPER WITH THE SIDE EFFECTS...that's the number one cause of non-compliance, not to mention scaring yourself to death.
_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Jill · Posted: Sat Oct 10, 2009 7:55 pm Post subject:

Hey Ike,

I am sorry that I did not reply before! I am glad that the doctors appointment went well and that you got to talk to another CH'er in the waiting room.

My neuro in Philadelphia was ALWAYS late and one day I was hurting and doing this rocking movement that I do and do not realize it when the guy next to me look at me and said, 'Clusters?' It was a strange moment because he recognized the rocking... he got them too. I was almost going to say 'no, I have clusters' but then realized that he got it. It was a strange but good feeling and sad to meet someone else with them too.. hard to explain really.

Anyways, it is hard to measure if the medicine is worth taking with the side effects. Marty and I have been having this talk as I started the Sandomigran but it makes me so tired that it is hard to function. I started with taking it at night and it says to increase so tomorrow I start with three times a day! I hope that this exhaustion will not be so bad but damn!

My theory is that it is better to try it and then if it does not work or the affects are too great then you can always stop. But if you do not try than that will get to you. I told Marty that at this point, I would be nuts to not try this medication. What do I have to lose right now?

Hugs and vibes being sent your way!

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

Sherri · Posted: Sat Oct 10, 2009 9:00 pm Post subject:

Of course you have to try your meds...you never know, it could be the one. Fingers crossed.

I took Depakote and felt like I was walking through molasses. I asked the RPh, if my body would adjust, he said "No", the higher the dose, the more I'd feel that way...I was on the lowest dose.

My daughter was a toddler...there was no way I could raise her like that. I lived alone with her then. My speech and cognitive skills were slowed incredibly. I was nearly catatonic...I lost my personality and about all of my ability to function or stay awake with them. It was too dangerous to be alone with a two yr old, drive, work, etc. I threw them out. And that was that.

It just comes down to common sense. If you're bedridden or staring out the window all day, where's the sense in that? I've lived alone more than I haven't, even when married. Even if they worked, which they didn't, what kind of life would I ever have? I'd never have a break in between.

As we chronics all well know, we take advantage of the "good" days. Get things done, go out, etc. Meds that keep you asleep around the clock arent' doing you any good...and you could seriously hurt yourself.

I really hope they work for you. It must have been great to randomly meet another CH. Until you guys, I never met one...it was very isolating and frustrating. It feels so good not to have to attempt to explain, and to KNOW they understand. I killed myself trying to explain to friends, family...Drs to no avail. They just shrugged it off. My mother told me "It wasnt fair to the family"...me having CCH. What the hell?? And they SAW me go through hundreds of hits...I used to sleep in my car, infront of the emergency room for a few yrs, when I ran out of oxygen. In the winter too.

One night, we had a horrible blizzard, I lived with my parents at that time (going through a divorce, and the landlady from hell wanted her condo back) I had a little car, a GEO prizm, my father had a four wheel drive Blazer...I was having a really bad hit, covered in sweat, my eye swollen almost completely shut, crying, losing control of myself.

My father sat on his ass, didn't give me a ride to the hospital...so I drove thru the blizzard, the car was a stick shift, light...I couldn't see shit...My father said "Good luck" I have given up on trying to explain to a non CH with the exception of our supporters...it is what it is. Im too tired to do it, I tried for years. Even my current Dr downplays it...I can see he thinks Im making it out to be worse than it is. It really hurts me sometimes.

Anyway, drink lots of coffee, and I'll say a few prayers that you get relief. With all of my heart, I hope you do. I want to hear one of us "Fab Four" tell us "they suddenly stopped"....that is my fondest wish.

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.