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        Supporter's Corner >> Supporter's Corner >> Hell on Earth
        
(Message started by: Daujamara on Nov 18^th, 2006, 12:33pm)

Title: Hell on Earth
Post by Daujamara on Nov 18^th, 2006, 12:33pm

:-/

The love of my life has just had 2 attacks in 3 days after 6 years of peace... wel not painless years but CH-free years.. Only now I understand what he was always so afraid of, fucking hell on earth..

My strong man is now broken and beaten and worst off all the fear is back..

Them warnings; flashing lights, blind, humming then the silent eye in the storm when there is no pain at all but you know that this time it is not a false warning, its the real thing and its goin to hit hard.

His hands went numb, and I knew that this was what he'd been preparing me for over the years.. The needle and nose spray which he used to never part from where out of date and finally forgotten and thrown away. I, we, never bothered to get new ones because we were convinced he'd grown over the CH-attacks.

Its so unfair, all was going so well.

I was strong and sat by his side and tried every trick in the book, I watched him go through hell. Then after 8 hours that first litle snore he gave after the immense battle, I could finaly cry;

I used to quote Sade to myself and say; "I've paid for all my future sins" but after watching what my love had to go through I'd say he's paid for all of the future sins of the whole of humanity!

Then 1 day break and yesterday he wakes me up and say's I'm getting the warnings again.. I thought no way this cant be, but yes... he's just gone through it all again.. He's broken, and I wish I had morphine or anything to take the pain away from him.

Hellraiser is nothing comparred to this.

I will do what ever I can to make the moments he's OK worth wild the pain... but I can not believe... if this is goin to be a weekly thing.. NO it wont... it just came back twice and now it will be gone again..please god!!!

Nothing has changed in his diet, he quit Clonidine/Dixarit 4 years ago, and mentally and physicaly he was doin realy good... out of the blue

FUCK!

Title: Re: Hell on Earth
Post by BB on Nov 18^th, 2006, 4:39pm

Dear Daujamara,

My husband also has CH, this is his first diagnosed cycle and yes it is hell on earth! I know what you are going through. HUGS!

Its not just the pain but the fear, the despair, the way it can wreck the whole family's life .... IF YOU LET IT!

As much as you and him would like to deny that the cycle is back, dont! The best way to deal with it is to get whatever medications that worked for him before and spray the beast with these silver bullets, and do it now!

It sounded like he used Imitrex injections in the past, so go to the doc and grab a prescription and shoot the beast the minute he feels the warning signs. If he had used oxygen before, get it too. If he hadnt , give it a try this time, it can work wonder. He had been through it before, so he would know what best to get.

You can help him too, getting him some ice and brew him a nice strong hot cup of coffee and just remain nearby will help him tremendously. Put the ice on his neck, on the side of the cluster, also on his back ( on the spine ) and on the temple also helps. If he sweats a lot during an attack then you can help wipe him down once its over, keeping the room cool like switching on a fan or aircond will also provide him with some relief.

There are a lot of really good, practical, useful information on the Board about how to cope/deal with this ailment, read as much as you can and discuss it firstly with your husband and then with his doctor.

Hang tough, it will get better. Vent away and ask any question you wish, we are here for both of you.

Hugs and painfree wishes to both of you.

Annette

Title: Re: Hell on Earth
Post by Jonny on Nov 18^th, 2006, 6:34pm

on 11/18/06 at 12:33:25, Daujamara wrote:

The love of my life has just had 2 attacks in 3 days after 6 years of peace...

Lady, I have lived that life everyday for 30 years.......I was chronic and lived that.

You need to stop complaining and start reading how you can help.

Title: Re: Hell on Earth
Post by Linda_Howell on Nov 18^th, 2006, 6:58pm

Quote:

at 9:33am, Daujamara wrote:The love of my life has just had 2 attacks in 3 days after 6 years of peace...

Lady, I have lived that life everyday for 30 years.......I was chronic and lived that.

You need to stop complaining and start reading how you can help.

« Last

2 attacks in 3 days after 6 YEARS :o :o :o

Sorry, I have to agree with Jonny here. 19 Years chronic for me. Day in and day out.

While you seem to be very poetic you really should read all the links to the left of here and see how you can help him get what he needs to combat this, this time around.

There are links here for meds that are preventatives, abortives, oxygen links, etc.

good luck in your reading, you are doing the right thing to come here for info.

Title: Re: Hell on Earth
Post by Sean_C on Nov 18^th, 2006, 11:03pm

I've had CH for 2/3 of my life, and thousands of hits, lots of folks here have. FUCK is a very common word in our vocabulary ;;D

Welcome to the board, lots of good info for you to read up on.

Just curious, his hands go numb? And you stated 8 hours, if thats the case, he's not suffering from cluster headache. Maybe he should see a nuerologist.

Sean....................................................

Title: Re: Hell on Earth
Post by Daujamara on Nov 19^th, 2006, 3:07am

I know 2 attacks in 3 days after 6 years of peace seems like heaven to some of you, and I didnt mean to sound ungratefull... I have so much respect for all you people whom deal with this, please understand that I wrote that melodramatic text after 3 days of watching him suffer and practicaly no sleep. Perhaps it was my lack of knowledge that convinced me that he'd grown out of it,
and perhaps having the fear for the beast back is even worse than the pain.

You are right, we should not pretend it will go away but acknowledge it. I will get the immigran injection and I will order the oxygen (he's never tried that).

CH was the neuro's conclusion after his scan and a bunch of other tests and drugs about 14 years ago. As a child he used to have the attacks weekly, then as a teenager 2/3 times a month. Then when I met him, it was gone untill last wednesday. (he's 32 now)

I am now wondering why no-one else has the numb to no feeling of their left hand and why their attacks last less long. We will go to the doctor tomorrow but he is very scared to goto the neuro again and be treated like a test bunny like last time.

Most of the symptoms are equal to the ones I'm reading here, first attack on the right side then 1 day later the left side, vomiting, tearing red eye, head banging against the wall, the why O why stage, then the I wanna die stage..

He cant speak normal anymore (words in the wrong order and context) his whole body starts shocking and spastic movements. He cant pace or walk as some discribe he's totally gone. He made me promise not to take him to the ER, if he hadn't had done that I would have called the ambulance. He sais it only goes away when he fals asleep (hmm I will be reading about sleeping pills next, they work for any of you?)

Again I'm sorry I barged in and made our situation the worse in the world, I couldnt emagine there were people dealing with this on a daily basis, I never even knew this kind of pain existed and I admire those of you who deal with that, you must be the strongest warriors on earth without anybody beeing able to see/understand your battles.

Thanks for the replies and thanks for all the information on this site, it realy helps us allot!

Title: Re: Hell on Earth
Post by BB on Nov 19^th, 2006, 4:50am

Dauja,

As much as he hates it , as it has been 6 years its best that he sees the neurologist again and conduct some tests/scans just to be on the safe side that nothing else is lurking in the background. Its better to be safe than sorry.

As we are new to this ourselves, I totally understand how you feel. Its nothing like anything we have experienced in the past in term of pain and the terror associated with it. The people here are not belittling your pain, they just try to point out that you are not alone and that there are many people who manage to control it enough so that they can live with it.

Wishing you and your husband all the best, hoping that relief will be found soon.

Take care

Annette

Title: Re: Hell on Earth
Post by Daujamara on Nov 19^th, 2006, 5:41am

Thx Annette,

I will try and persuade him to make an appointment with the neuro, I read about all the different med's on this site and will bring all my gatherred info to the neuro to discuss.

Am very excited about the oxygen, hoping that and the immigran injections will help during his next battle.

Warmest regards,
Dauja

Title: Re: Hell on Earth
Post by Sean_C on Nov 19^th, 2006, 7:56am

I think he should go to see a nuero too, some of the symptoms match but some are way off.

Sean..............................................

Title: Re: Hell on Earth
Post by E-Double on Nov 19^th, 2006, 8:09am

on 11/19/06 at 07:56:20, Sean_C wrote:

I think he should go to see a nuero too, some of the symptoms match but some are way off.

Sean..............................................

Sorry he is in physical pain and that you are pained emotionally by his suffering.
I agree with Sean in that things don't seem to match. Given there are some variants that present amongst people, however your man's symptom's apppear to be signs of something more sinister. Sorry if this is scary but it doesn't sound like just a pain syndrome. That would scare me even more than the g-d awful pain

Title: Re: Hell on Earth
Post by Margi on Nov 19^th, 2006, 6:11pm

:-/ um...sounds like migraine to me - the vision disturbance, the "aura", the numbness in the hand, the confusion and slurred speech, the 8 hours.... all point toward migraine. Sharing some symptoms with Moya Moya is also a possibility. Make sure you mention the hand numbness when you see the doctor.

Seriously, this doesn't sound like cluster.

Title: Re: Hell on Earth
Post by Daujamara on Nov 20^th, 2006, 4:16am

He has migrane every day, varieing between kip 3 and 6.

Then he has migrane attacks once or twice a month (kip 7/8)

Kip 10 attacks were missing for 6 years and have now returned, these attacks give the warnings the "normal" migraine attacks that he has monthly dont scare us and dont give any warnings.

The numbnes etc. has been discussed with a neuro al them years ago (symptoms havent altered) therefore I am not worried its something other then CH.

We have discussed going to a neuro but he doesnt see the point (been there done that, didnt do me any good).
For now we are going to prepair ourselves by getting immigran and oxygen in the house and if the attacks increase he will set aside his sceptisism and start the research again.

Tonight he had a good sleep and the world seems abit more collourfull today :)

What is Moya Moya?

Title: Re: Hell on Earth
Post by E-Double on Nov 20^th, 2006, 9:04am

He has Migraine or Clusters or both??
They are two distinctly different HA types.
Although some who have both say thay they sometimes blend.

Good luck

Title: Re: Hell on Earth
Post by Margi on Nov 20^th, 2006, 11:16am

on 11/20/06 at 04:16:49, Daujamara wrote:

What is Moya Moya?

this is moyamoya: http://www.moyamoya.com/

just so you know - the Kip Scale of pain rating is for cluster alone. From what you say here, I'm still not convinced that this isn't strictly migraine - they also appear in different intensities.

Title: Re: Hell on Earth
Post by Sean_C on Nov 20^th, 2006, 7:25pm

on 11/20/06 at 11:16:10, Margi wrote:

From what you say here, I'm still not convinced that this isn't strictly migraine - they also appear in different intensities.

I agree, its very highly doubtful he has clusters, he's obviously having pain, its just not cluster pain.

Imigram will work for migraine Daujamara, as will the o2. His best medicine is relaxation and sleep. Although too much sleep might give him a migraine, as will certain foods, alcohol etc etc.. you should be able to google migraine triggers for a more complete list.

I wish you the best in your journeys.

Sean.............................................