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        New Message Board Archives >> Jan-Mar 2003 >> DAMN'D BEAST!
        
(Message started by: ZAIRA on Feb 4^th, 2003, 2:28pm)

Title: DAMN'D BEAST!
Post by ZAIRA on Feb 4^th, 2003, 2:28pm

Hello friends,

today, without any pre-advice (pressare of the eye etc.) the beast exploded in my head.

http://www.ouchitalia.it/zdocpic/mostro_2.jpg

I was upset for the first 15 minutes and I couldn’t do any movements, my forces failed and I couldn’t do suddenly the Imitrex injection.

When I had the injection the attack was already at the top of the pain and imitrex couldn’t stop it, so I had to take another Imitrex and O2.

For the first time I cried with the head in the pillow. I’ve been suffering very painfully for 1 hour and a half and then the beast left me. I am quite worried of the modification of my CH....

Thanks God I didn’t hurt my head .. I am young and it is very hard to suffer in this way...

Thanks for yr. help and understanding....

Zaira

:'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'(

Title: Re: DAMN'D BEAST!
Post by suzy617 on Feb 4^th, 2003, 2:40pm

Dear Zaira,

So sorry your in so much pain. I hope this cycle ends for you quickly and you remain PF.

I guess thats what the beast really looks like. You have a great talent.

Take care,

suzy

Title: Re: DAMN'D BEAST!
Post by Peppermint on Feb 4^th, 2003, 2:45pm

Damned Beast. >:(
I'm sorry you are suffering Zaira.... you ARE young and no one deserves such pain.

I don't know that my words will help you any, but I will lend an ear if you need one! ....And please be careful with the Imitrex... so close together... doesn't sound safe.

Pregherò per voi la mia sorella. Perdoni prego il mio italiano terrible.

Pepper ;)

Title: Re: DAMN'D BEAST!
Post by JDH on Feb 4^th, 2003, 3:06pm

:'(Sorry to hear you're in so much pain Zaira, please hang in there. Hopefully you're at the peak of your cycle and this is as bad as it's going to get.
PFDAN's to you Zaira

Title: Re: DAMN'D BEAST!
Post by Mark C on Feb 4^th, 2003, 4:19pm

I am sorry you are getting hit. Please hang in there. I am sending PF vibes your way.....
Mark

Title: Re: DAMN'D BEAST!
Post by Karla on Feb 4^th, 2003, 5:25pm

Zaira, I am praying for you for your pain to end. I am sorry to see you like this. Hopefully it will pass soon. If you need us we are here for you.

Title: Re: DAMN'D BEAST!
Post by cathy on Feb 4^th, 2003, 5:40pm

:'( Zaira....so sorry your suffering like this...hang in there .....pain free vibes coming your way.

Cathy

Title: Re: DAMN'D BEAST!
Post by athos12 on Feb 4^th, 2003, 5:57pm

Sorry to see you having a bad day as well..... I glad there are things that work for you.

You make me want to get some pencils again.... and pull out my sketch pad...

Athos

Title: Re: DAMN'D BEAST!
Post by Aussie on Feb 4^th, 2003, 6:40pm

G'day Zaira,

Not good hearing you pain, especialy geting hit for 1 and a half hours. I think I understand this scale of pain as it is was this length cluster that got me off my ass to seek help and find this site, about a week ago. I have been able to cope Medication free for fifteen years on the 15 - 20 minute CH's, just grinning it out, but 90 minutes is too long in hell.

Get well mate, and fight the beast whith everything you got.

Title: Re: DAMN'D BEAST!
Post by kim on Feb 4^th, 2003, 6:54pm

Well wishes coming your way Zaira. When I read your post, I was THERE all over again. Thinking of you! :)

Title: Re: DAMN'D BEAST!
Post by 2late on Feb 4^th, 2003, 8:25pm

sorry to hear your sufferin' Z, good luck, hope you get some much needed relief, your artwork is awesome! .........2late

Title: Re: DAMN'D BEAST!
Post by Mastifflvr28 on Feb 4^th, 2003, 11:29pm

awww Zaira,
Positive vibes (like prayers) going your way.
You deserve a break...
sigh,
Mast

Title: Re: DAMN'D BEAST!
Post by kissmyglass on Feb 5^th, 2003, 1:40am

Hang Tough Z!! :)

Kev C

Title: Re: DAMN'D BEAST!
Post by Opus on Feb 5^th, 2003, 7:35am

Zaira, Some times I get lots of warning and sometimes I am caught by surprise. It's scary when you get hit so fast and hard that nothing makes a dent. Yes protect that head of yours. The person inside is increadably talented.
Praying for PFDAN forever for you. Thanks for being there the other day.
Opus

http://www.premier.net/%7Ecspedale/opus/images/opus.gif

Title: Re: DAMN'D BEAST!
Post by ozzman on Feb 5^th, 2003, 8:49am

Zaira,
Sorry to hear you were hit so hard. It is scary and it makes you think that the next ones will be just as hard, but most of the time it only means that you reached the peak of your cycle.

Hang in there and don't let it take over your life. Live your life like you are always PAIN FREE.

Ozzy

Title: Re: DAMN'D BEAST!
Post by Riccardo on Feb 6^th, 2003, 1:28am

Zaira wants to thank you all for the nice words.

I have talked to her yesterday, she is definitely again into the CH hell.....

The wrongest thing are her attacks, in which she lost completely her "consciousness" that she isn't able to make the Imitrex shot and can't avoid to bang her head against anything.....

I know that there are very few of us that experience the same thing. Any advice?

Title: Re: DAMN'D BEAST!
Post by Charlie on Feb 6^th, 2003, 4:38am

Rats.

Pain is one thing but being saddled with life-wrecking torture pisses me off.

Thinking of you Z

Charlie

Title: Re: DAMN'D BEAST!
Post by ozzman on Feb 6^th, 2003, 10:23am

Zaira, Riccardo,

I don't know about everyone else, but even if I'm hit with a major kipper I make sure I get to my meds and take them. The knowledge that meds will help if not take ALL the pain away altogether makes it possible to give myself a shot, or a spray or suck on oxygen, whatever. If she cannot do this herself, she needs someone close by to help her, to give her the shot, to had her the meds. You HAVE to be stronger than the CH, you HAVE to be stronger than the pain. If the meds work just TAKE THEM!! No sense in suffering just for the sake of suffering.

Ozzy

Hoping for PFDAN fo Zaira

Title: Re: DAMN'D BEAST!
Post by Nadia on Feb 6^th, 2003, 4:54pm

Hello to all you,

Nice to meet you, my name is Nadia and I am Zaira’s sister. I address to you because I know that you are in touch with Zaira and that you encourage her when she is bad or she has clusters; I am touched by your sensitivity.

I write you because Zaira has been in cluster for 2 days (out of her normal period) she has hard attacks from the begining and she looses control, in those moments she tends to bang her head against the wall, and sometimes she can’t take Imitrex .... furthermore the doctor thinks that this s not true so she is more and more sad....

Riccardo also wants to know some news from you about these symptoms (if anyone of you have similar attacks and reactions) because in the OUCH ITALIA Association there are no similar cases.

Zaira is a strong girl but she is tired of this situation she has also a problem in her eye she is upset and I don’t know how to help her...

PLEASE HELP!

Thank you in advance, Good Luck for all the clusterhead and thanks for the nice words!

Your supporter, Nadia

P.S. Pepper... hai un buon italiano ;)!

Title: Re: DAMN'D BEAST!
Post by jonny on Feb 6^th, 2003, 5:05pm

Hi Nadia,

When the pain gets that bad I bang my head with my fists or squeeze my head as hard as I can, Im sorry to hear Zaira is having such a bad time.
I dont use Imitrex, maybe someone else can answer that question.

........................jonny

Title: Re: DAMN'D BEAST!
Post by parrothead on Feb 7^th, 2003, 12:27am

Zaira,

Sorry to here you're in such horrible pain, hang in there and take the Meds ASAP.

Praying you're pain ends, and wishing good days to you soon!

Parrothead

Title: Re: DAMN'D BEAST!
Post by Svenn on Feb 7^th, 2003, 2:44am

Hi Zaira
So sorry that you are in the battle again. :'( :'(
Just wondering how many shots you are using in 24hours?

I know Glaxo says only 2 shots.

My neuro tells me to take the shots we need but no more then 6-8 in 24hours.

Have been there and tried that.Can`t say that i noticed sideeffects with 8 shots inside.

When the pain is as i start banging my head or try and "move"the pain to a other plave on my body ,i`m usually hospitolised,because at that stage im suicidal

I also combine them with oxygene at minimum 10-12L/minute

Also use verapamil retard 120mg and prednisolone.

Have tried the Duragesic-pads.They only took the edge away for a short periode.

You can read about my coctail to brake my cycle here

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily

Dont know what else to tell you but i feel for you and the struggle you are in now.

Its sound silly ,but try and relacse .Someday the "General Cluster and he`s beast`s"will leave.

Its 1 thing that i cant get out of my head,and thats what happend to me after the heartattack.Was hit when i woke up at the ER.After they put me on Marevan "bloodthinners" my cluster has almost vanished.Only shadows left.Don know if there is a connection between verapamil and Marevan.Just know 1 thing and only verapamil did not help me this way before.Have asked around here too.As of this day i know about 12 heads on that combination that has got "a new life"after they started that combination.

So it has been said.My heartattack is NOT medical related.Got it from my family on both sides.That was the first thing i asked the cardioe`s .

After the angiography i got the answer back from the cardiologist and at the medical part he is write that i SHALL have the trex-shots WHEN needed.
So there it is for me

Just hope you understand me.

The very best from Svenn :-* :-*

Title: Re: DAMN'D BEAST!
Post by hdbngr on Feb 7^th, 2003, 9:41am

Zaira,

Hang in there, young one. We'll be thinking of you and wishing you happy thoughts and PFDAN. :)

Title: Re: DAMN'D BEAST!
Post by suzy617 on Feb 7^th, 2003, 12:04pm

on 02/06/03 at 01:28:39, Riccardo wrote:

The wrongest thing are her attacks, in which she lost completely her "consciousness" that she isn't able to make the Imitrex shot and can't avoid to bang her head against anything.....

I know that there are very few of us that experience the same thing. Any advice?

Riccardo, I have never heard of anyone losing consciousness from CH, maybe others have though. I hope Zaira gets PF days real soon. My thoughts are with her.

suzy

Title: Re: DAMN'D BEAST!
Post by catlind on Feb 7^th, 2003, 12:12pm

Zaira, you have my best vibes to rid you of the pain.

I hate to hear of you in pain. Remember that we are all here for you. Your artwork is a wonderful way of showing us all the physical depiction of this horrid beast.

PFDANS
Cat

Title: Re: DAMN'D BEAST!
Post by ZAIRA on Feb 7^th, 2003, 2:57pm

Hello to all my clustered friends.

First of all thank you for your nice words and for the advices you are giving me to preserve my mellon!

I compare you as angels who make me fly when I can’t!

Svenn and all: when I have a cluster I have 5/6 attacks before taking Imitrex I try O2 but it doesn’t always work. I don’t take more than 3 Imitrex eventually I take other triptans (Relpax).... hopefully my heart is strong ;D!! I have never used Prednisolone because I am too young so I use Lithium and verapamile.

But there is something NEW:
I started a cure with Seroxat/Paroxetina (20 mg. a day = 1 pill) it seems that to 3 persons in OUCH Italia, Riccardo included, have had big risults and ... miracles!! See the post “Now 3 cases OK with proxetina” posted by Riccardo in the Medication, treatments, terapies.

My cluster started 3 days ago:
The 04/02 I had an attacks,
The 05/02 I had 5 attacks,
The 06/02 I had 4 attacks,
Today I am save .... no cluster :D.

My doctor thinks that I have less attacks thanks to this med with 600 mg. of verapamile.

My problem is that I loose control during the attacks :'(.

Greetings to you and a prayer for whom is suffering in this moment!

Your headbanger :'( from Italy!

Zaira :-*

P.S. Jonny: when I have a cluster I wear the T-shirt you gave me... it seems to be lucky.... ;)

Title: Re: DAMN'D BEAST!
Post by cathy on Feb 7^th, 2003, 3:07pm

Hi Zaira....Glad your feeling better!! ;D

Title: Re: DAMN'D BEAST!
Post by jonny on Feb 7^th, 2003, 3:16pm

on 02/07/03 at 14:57:40, ZAIRA wrote:

[b]
P.S. Jonny: when I have a cluster I wear the T-shirt you gave me... it seems to be lucky.... ;)

It is lucky, Zaira......I put a jonny lucky magic spell on it before I gave it to Davide to bring to you in Italy ;D

......................jonny :D

Title: Re: DAMN'D BEAST!
Post by JDH on Feb 7^th, 2003, 3:33pm

Hi Zaira,
So glad to hear you're feeling better and I hope you remain pf, you need a break.
Jim