Robbed of the life we once had
Robbed of the life we once had
My husband of 27 years has been chronic for nearly 5 years and barely a day goes by without the monster in our house. He hasn't worked now for nearly 3 years and spends days walking the dog, odd jobs if he can, watching TV (obviously all if he's able, otherwise he's in bed). We can't plan or do much together at all, at a time in our lives when we should be. I'm so lonely and feel bereft, mourning the marriage and life we have worked so hard to enjoy and now can't.
Episodic for about 15 years before that, at least we had a life then and he could function relatively normally around the episodes.
I feel so lost, frustrated and very angry that this monster can't be tamed (exhausted all drugs, O2 didn't help, nerve ablations didn't work, currently trying Gammacore although I'm really not holding my breath)
I'm not really looking for advice, I just wanted to reach out to other relatives of sufferers as there's a lot of advice on how to support someone with the beast, but not a lot for those living with sufferers. It ruins our lives too, obviously we don't suffer the pain in our heads, but I know my heart is crushed for sure! I'm not taking away how awful this is for my husband at all and I'd literally chop my own leg off if it meant it cured him. It's just really lonely for us too
Are there an groups for relatives specifically?
oo
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I'm so sorry to read this. OUCH is here for supporters as well as sufferers. You could have a chat to our Advice Line which might help a bit. The volunteers are either sufferers or supporters and you could leave a message to ask if a supporter could ring you back for a chat. 0800 6696824. Also, we're having a conference in Newcastle in June if it's possible for you to make it. There's nothing like meeting other people who are dealing with the same monster! We have a supporters only breakout session at the conferences which provides an opportunity to meet others in the same boat. It's surprising how much that can help. If that's not possible for you, please do try ringing the above number.
All the best to you.
Dorothy
OUCH (UK) Trustee
It's a tragic situation to be in. We've all discussed whether it's worse to suffer CH, or watch a loved one in such pain.
Definitely reach out to our advice line as Dorothy suggested, our Facebook page may have members in a similar situation, perhaps even near you.
A note on the Gammacore, it worked really well for me. But only when I was using it. As soon as it was off the pain returned. I'm awaiting the ions surgery, and the gammacore gave me hope that it should help.
It's hards to watch or be in that much pain, but please try to have a bit of hope xXx
Oh Kellie, my heart goes out to you it really does. I've been suffering with this 'monster' for over 10 years now and sadly I no longer have my wife alongside to support me (she died of ovarian cancer some 5 years ago now). Thing is I fully agree you need a 'supporters group' or something because you know it's not like we are easy to live with is it when we are having an 'attack'....I mean, I can laugh about it now in the daylight as it is but that terror is still lurking in the back of my mind. I had 7 of them the other day, worst day of my life...if I was a horse I would have shot myself --.
sorry folks but you have to laugh when you can ... else what's the point?....well, I think there is an answer to that but it's not one that most of this world wants to hear.
..ps my doctorate is in education not medicine.
...but user names Ron and Ronnie are already taken apparently...so there you go ----♂️
...ps totally get what you mean about your leg, though others might have skipped over that...I would have done anything for my wife when she was going through what she went through ...true love. God bless you Kellie.
Hi. I'm so sorry you're having to deal with all this. I was just wondering whether your husband has had any success with the gammacore. Mine has changed my life. I use it for 3x2 minute bursts morning and evening and have been almost pain free since the day I got it. It's worth persevering with. I know it won't work with everyone
all the best to you both
Okay, experiencing some problems with this website and not sure which post is current and which isnt but then having cluster headaches I'm never sure which way is up or down anymore anyway so there you go.
Just joined the organisation and received a pack with a band in it that wouldn't fit over my head unfortunately (I jest of course but sure you know what I mean --)....have to say though that it wasn't easy joining for some reason (?).
Anyway, that aside I've found my local doctors quite unhelpful lately and impossible to get in contact with neurologist that diagnosed condition in first place several years ago now. Can't get oxygen via NHS as a result and was wondering whether I can get it elsewhere like mountaineering supplies etc...any thoughts/suggestions etc...
Asking in absolute desperation, had 9 attacks the other day....can't go on like this...if I was a horse they would have shot me by now.
Ron
My GP practice were really unhelpful in a similar situation - frankly too complicated to explain. My partner ended up ringing the practice once a week every week for over a month until they accepted they had to provide oxygen. If I had known I could find and print out a copy of my local MMG (medicines management group) prescribing guidance for headaches (search for "headache pathway", you should get to a flow chart eventually), to show a GP or practice manager, I think I could have got quicker results (in some areas this might be from your local CCG).
It might be worth contacting the department where you were diagnosed, they should be able to get your letter to you asap. They may also be able to prescribe more oxygen - my GP only prescribed two large bottles, in contrast the headache nurse prescribed 4 plus 4 ambulatory cylinders, so I could occasionally go out. I'm now using gammaCore, it's not working as a preventative but does abort an attack - much easier to carry about and faster to treat an attack.
Good luck. Hope you get treatment soon.