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When your Support gets Frustrated


weatherman
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How do all of you avoid (or at least try to minimize) the frustration that a spouse / family member / partner feels when the Beast arrives?

I'm chronic and this is the "low time of year", getting hit every other day with K4-6 HA.  Typically abort immediately with O2 when at home.  I bust with as much MM as I can fit into the schedule, which is weekly, and do not use prescription meds.  I'm also on the D3 regiment and use RC seeds every month or so.

The problem is when traveling, either out of town, or just shopping for the afternoon.  I keep O2 in the car, but it's not always convenient (or allowed) to carry it.  Running back to the vehicle several blocks for relief can be a pain in the arse.  Afternoons (1-3 pm) are the Beast's favorite.

I suffer through the agony for an hour or so, get ice water and try to move around.  90% of the time it subsides, then exhaustion sets in.  When my wife sees me suffer like this, she gets really frustrated, tries to help, then I hear later about how we never should have gone anywhere.  She is becoming hesitant to travel with me and criticizes me for not being pro-active enough in preventing CH from "spoiling our day".  Historically, she has been a great supporter.

     Would you carry the Imitrex and fire-away as soon as CH is noticed?

     Should I just run and hide when the Beast arrives?

     Is leaving home just a bad idea during likely "Hit Times"?

     (just kidding,  I'd never let the Beast get that much control over me)

     Should I tell her to chill-out and leave me alone?

Thanks ahead of time for any suggestions and listening to the rant   :)

weatherman

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My ex wife would slam the door and leave and yel cant deal with this sh*t. My beautiful bride now asks me if we should cancel....night and day difference.

I lost what I thought were my 2 closest best buds who didnt even have enough gonads to visit me during my 1 of 4 brain surgeries.

The disease takes far more than our health

perhaps...maybe she just had a bad day,.

I have CH,. it does not have me. I do my best to keep living.

Hope things work out for ya

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I often think this beast is as hard, if not harder, on the ones we love.

I will confess up front that I'm not currently in a relationship, but was when this Hell started 6 years ago.

Some ideas that might help.

Do be prepared. I know that is difficult with the randomness, and severity of these types of attacks. But always be thinking what if... What about having a can or two of Red Bull on hand? Get a small cool box you can keep them in with an ice pack to keep them cold.

Give your partner something to do. I've often heard the comment 'I feel so helpless, I can't do anything but watch my partner suffer'. This will lead to frustration in a big way! Helplessness is tough to deal with. When in a relationship, I'd ask the person I was with to get me a glass of cold water (before I knew the wonders of red bull), guzzle it down, and ask for another. Ask to be held, ask for a wet wash cloth to put on your face. Get them doing something, anything, that makes them feel like they are helping.

If they help, they feel empowered instead of a victim too.

And after the beast has left, thank them for their help, understanding and patience.

I know. We are the ones suffering and yet have to consider the feelings of those around US! You feel like it should be the other way around, but by getting them involved you are laying the seeds for support and understanding.

Anyway, just my 2 cents. (or 2 pence, depending on where you live - hehe)

MG

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I am so completely filled with admiration and awe for the person in my life that I support that I can't imagine anyone feeling differently.  It can be very tough being a supporter and watching someone you love go through what they go through, and I can see how that could sometimes get manifested in negative ways (frustration or even anger).  But if being a supporter doesn't put your own "problems" into a whole different perspective, then I gotta say there's something wrong with you.

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Intranasal ketamine has damn near completely erased this scenario from my life.Highly recommended, you can bring it with you everywhere quite easily.

  Ricardo, I'm sorry that I seem to have missed--or not paid enough attention to--discussions of this before.  You find this preferable to trex as an abortive? Works faster? Less side effects? Or just easier to administer?  Is it on the "approved" list of CH treatments, so that a doctor could comfortably prescribe it?

Thanks.

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Hmmm ..... Intranasal ketamine, haven't run across that one yet. 

Initial research shows NMDA receptor antagonists for the treatment of chronic pain appear to be a very interesting possibility.  Effectiveness with little side affects?

Gotta check with my Neuro on this one.  THANKS Ricardo !!!!!

weatherman

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Intranasal ketamine....I think this first started blinking on my radar when hearing about it at the last CB conference. I happened to be sitting next to Ajax - he's been prescribed it by headache specialist Boston Headache Doc - and apparently it has saved his arse on more than one occasion.

You very well may have to just keep on pounding us over the head about it Ricardo until it finally sinks in and we all really start looking into it seriously. Hmmm....not sure now whether that "pounding over the head" expression I just used was appropriate or not.  :D

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I will update the Ketamine thread soon!  As of right now mostly I am relying on Ketamine and Psilocybin to abort.  Ketamine for the mild/moderate/almost severe clusters, and if it fits into the schedule Psilocybin to abort the heavy clusters.  When it doesn't fit the schedule I go for Sumatriptan as a last resort. 

Boston Headache Doc is the one to go to for info...He can supply you with all the info you need to bring to your neuro.

-Ricardo

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I'm chronic too, she puts up will a lot and just having someone to go out and do things with keeps me fighting, I take red bull, even put an ice pack on the neck for the ride, strong coffee, sun glasses and a 1/4 of a hydrocodone here and there. yea, we lose a few of our mates on the way through this ...  hard to tell who is going to stay or fade away. stay strong my brother , peace

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