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Cluster Headache Help and Support >> Cluster Headache Specific >> How can I get my partner to understand?
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Message started by Ian-H on Mar 24th, 2013 at 5:14pm

Title: How can I get my partner to understand?
Post by Ian-H on Mar 24th, 2013 at 5:14pm
Hi all,
       New here, just started my latest episode 2 days ago. Had a really bad shadow all day so waiting for the monster to arrive at around 1:30am, 9pm atm.

Anyway, I had a bad one last night, and today I have had a hungover type feeling all day with that jack boot in your face feeling and a little dazed to say the least. So in tesco shopping and the missus says "Whats up with your face?" I say "the top right side is numb and I am not angry, its the headache I got last night". She laughs and walks away and says "something wrong with you". Well no s*** sherlock its called a cluster F headache and they F........ hurt or tickle a bit...(being sarcatic to myself in my head).  :-?

So tonight I said I am staying up until the attack has happened, she went "piffft and laughed" WTF

Been with this person 18 years got one child and started cluster headaches in 2007, that happen every 1-2 years.
I am no medication as nothing works !

How can I make her understand without her ridiculing me?  >:(

I feel like bouncing a toffee hammer on her eye ball for 45 min just to show her the pain!!  ;) Joke but I dont need to explain the feeling, as its impossible!!!  :-[

Title: Re: How can I get my partner to understand?
Post by Jeannie on Mar 24th, 2013 at 6:38pm
You could try to have her read here a bit.   Maybe seeing that others feel the pain as intensely as you do will make her realize that you are not over reacting. 

I have often wondered if I would be a good supporter to a sufferer if I had no idea what CH really was.  I like to think I would but no one can really know how bad they are if one has not experienced them.   

Have you tried oxygen?  I was skeptical that it would work for me and put off trying it. Now it is my main abortive and I wouldn't be caught without it... ever.  Even if you've tried it before, give it another try with the correct mask and proper flow rate. All the info is in the yellow tab to your left.  Click on it. You'll be glad you did.

PF Wishes,

Jeannie

Title: Re: How can I get my partner to understand?
Post by Ian-H on Mar 24th, 2013 at 7:17pm
Not tried oxygen, not really available in the UK if you smoke.... :D

I have tried the nasal spray thing, did`nt work! Doctor would not give me the injections!  :(

UK not a good place if you have an obscure illness, that cost too much money for the NHS!!! :-?

I just get on with it and I will admit, I really do feel for others that get it more than once a day for prolonged times. But I just get it once a day for about an hour or so at 1-2 months periods then nothing for upto 2 years then it comes back. :-?

Timing is good at the moment at 1-2am but last time I had them at 8-9pm and it done me in. I was very exhausted and ready for bed by 10pm every night!!!! :-[

I have told her in the past to read up about it, but I just get blanked or sneered at, with the attitude "not my problem", type thing.............. >:(

;D

Think I`am in the wrong forum!!!!   ;D ;D ;D ;D

They hurt bad !!!!!!!  :'( :'( :'( :'(

Title: Re: How can I get my partner to understand?
Post by Sledge007 on Mar 24th, 2013 at 8:15pm
Get her to read the letter under Getting to Know Ya/Letter to Employers (not enough posts to copy /paste the link)
and maybe try and find some youtube videos of other people in the middle of an attack. It isn't pretty to watch obviously, but maybe she needs to see it happening to somebody else to know that you aren't exaggerating.

Title: Re: How can I get my partner to understand?
Post by Sledge007 on Mar 24th, 2013 at 8:16pm
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
Got enough now :)

Here's a direct link to that letter. Above link didn't go to the thread.START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Title: Re: How can I get my partner to understand?
Post by Brew on Mar 24th, 2013 at 9:02pm
Have you tried the vitamin D3 regimen? I was episodic for 12 years, chronic for 8, and was having good success with the cluster buster methods until last March. Went on this regimen and have been pain free - totally pain free - since May, 2012.

I'll never go back to mainstream pharmaceuticals again.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Title: Re: How can I get my partner to understand?
Post by Guiseppi on Mar 24th, 2013 at 11:20pm
I second Brews suggestion, I've been pain free on the D-3 for 3 years now after over 35 years of episodic. Over 80% success rate, cheap, no side effects, really no reason n ot to give it a shot.

joe

Title: Re: How can I get my partner to understand?
Post by Bob Johnson on Mar 25th, 2013 at 7:49am
Living in the UK is the key to getting help!

Contact your excellent support group:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

I understand that you have a right to by-pass local medical care and go directly to a headache clinic. This group can advise you.

How to change your mate is beyond our reach but, if you get referred to a headache clinic, ask her to accompany you to see the doc. Hearing from an authority may help change her mind.

Title: Re: How can I get my partner to understand?
Post by wimsey1 on Mar 25th, 2013 at 8:12am
I'm just curious. Has she seen you during an attack? I ask because so many of us keep the dance private, not wanting others to see us when the beast is calling us to two step. I know I kept it from my wife for many years, and it wasn't until she saw how bad it was that some understanding dawned. Also, when many say they"have tried" this or that and it didn't work, they mean they tried it at levels too low to be effective for CHs. And O2 can be had as welder's O2. You don't need medical oxygen for it to work. God bless. lance

Title: Re: How can I get my partner to understand?
Post by jess-MTL on Mar 25th, 2013 at 9:32am
My mom and hubby read up on it a bit. For my mom, she just had to read the letters on the home page at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE and she was almost crying. What got to her the most was that grown men would admit to breaking down and crying because of this. She took it upon herself to "educate" the rest of the family after researching it, and everyone is pretty supportive.
Hubby saw me through many attacks, as well as giving birth (twice!), and knows that for me, the attacks are WAY worse. That says it all for him; if I would prefer to give birth over and over again, they must be horrible.
I would say, have your wife read up on it, even a little bit. You have been together for 18 years, the least she can do is take 10 minutes to read about what you go through. These headaches are bad enough without being made fun of on top of it.  :(
Jess

Title: Re: How can I get my partner to understand?
Post by Guiseppi on Mar 25th, 2013 at 4:37pm
The only other suggestion is to maybe consider this as her defense mechanism. For her to actually process how much pain you're in....it might  be too much for her. Just a thought...... :-/

Joe

Title: Re: How can I get my partner to understand?
Post by Pfunk on Mar 26th, 2013 at 11:18pm
I agree. Get her to read up a bit. Don't really think it's to much to ask. Also, seeing it first hand can be a bi much for some. For instance, I am 42 now and my best friend was staying with me about 12 years ago. We have been friend for 15 years before he actually saw me get hit full blast. After the episode was over I saw tears from him for the first time but he now has anewfound respect and understanding for our pain. Not saying put anyone through that. But educating could be the key. Best of luck.

Patrick

Title: Re: How can I get my partner to understand?
Post by japanzaman on Mar 29th, 2013 at 11:18am
I don't think you can ever understand pain unless you experience it for yourself. That being said, a bad brain freeze, while not really in the ball park, is probably the closest analogy most people can relate to. Now tell them to triple the pain and have it last for 90 minutes :o

Title: Re: How can I get my partner to understand?
Post by Brew on Mar 29th, 2013 at 3:48pm

Quote:
Now tell them to triple the pain and have it last for 90 minutes

Six or eight times a day for months at a time.

Title: Re: How can I get my partner to understand?
Post by Callico on Mar 29th, 2013 at 10:17pm
What Brew said!

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