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The price of a good day

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carlajo
sailingmuffin
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Post  sailingmuffin Sun Apr 17, 2011 11:28 am

Hi All,

I was wondering if this happened to anyone else. I had a bad migraine, got an IV on Friday, which knocked it down quite a bit- from a 9.5 to an 8, whoch I can live with. Yesterday, I had a really marvelous day- only fainted three times, got by with only one T3 and klonpin about 6pm, was able to read outside for about 2 hours and really enjoy the book and the lovely weather, excercised on the bike and talked to friends. It was just a nice day with beautiful spring weather here in the southeast. Today, I woke up with slurred speech, but was able to get rid of that and go to church, where I fainted about three times and had to leave the service early-unfortunate because it is Palm Sunday. I fainted during the service and Mom kind of freaked out. Anyway, I am home now, the head is creeping up and I do not feeln well. Why does it always seem like I have to pay for every good day? Does anyone else feel this way.

Also wrote a poem about this: http://fallingthroughpain.blogspot.com/2011/04/price-of-good-day.html


Pain free days,
sailingm
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Post  carlajo Sun Apr 17, 2011 2:45 pm

Hi friend-

I totally understand where you are coming from.

I am so sorry you are having a rough day today, I hope you can keep the pain from getting unbearable. Even though you are paying for it today, I am so glad you had a good/great day yesterday and that the IV helped.

Sending you a hug,
Carlajo:)

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Post  tortoisegirl Sun Apr 17, 2011 3:44 pm

Oh yeah I get that way too. Sucks that is sounds like you didn't push yourself too hard and still the pain spiked so fast. Have you ever noticed this with the IVs? Some people think that certain pain relief methods make their pain worse in the long run. ie. when their pain comes back, it comes back worse or the same as before the med, not lower (besides those hours or days where it was lowered). Similar to rebound, but not really, as its a short term thing. Something to watch out for.

I have never been able to figure out why I typically get a few days higher pain and then a few days lower pain, and it repeats. The number of days I get for each phase varies a lot too. We just have to live with what our normal is and embrace the days we can have some happiness. Everyone has their challenges in life and we are still lucky...it could be much worse. Best wishes.

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Post  somebodyhealme Sun Apr 17, 2011 4:24 pm

Yes, I really, really, really do. Even when I try my best to respect my limits, if I do something fun or out of the ordinary, I pay for it big time. It feels very unfair, but nothing about living this way is fair, is it? It really sucks sometimes.
somebodyhealme
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Post  living Sun Apr 17, 2011 5:21 pm

Oh i'm so sorry that your lovely day was followed by a horrible intolerably painful day. Your poem is really moving - it highlights to me that awful battle between being able to look up and be part of the magnificent day, feeling the joy of that and the hope, and then the crushing weight of being unable to even get out of bed the next day. You poor little sausage. **hugs**

I can't say I understand what you're going through because I don't suffer the same way that you clearly do Sad I don't experience 10/10 pain ever and I don't faint anymore - and certainly not as part of my migraines. Is neurocardiogenic syncope something like dysautonomia? Or postural orthostatic tachycardia syndrome? I know a young girl with POTS and she also gets headaches (i would call them migraines because they are chronic and daily) associated with it. She's only 16.

I do know that when things come together to a point where I feel well enough to say to myself 'o magnificent day' I hope I will do everything I can to revel in it and to hell with the price. Because that is living. Memories are made of magnificent moments of sitting reading in the evening glory or whatever it is that blisses you out. For me it's usually gardening. (It's never washing the dishes!)

You are obviously doing a wonderful job of managing to cope in extraordinary (and unfair, completely sucky) circumstances and I take my hat off to you. sunny

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Post  stephgood Mon Apr 18, 2011 11:45 am

Yeah I used to feel almost as if I was being punished for feeling better. Or sometimes like the pain was a lot worse after I had a good day to just put me in my place. Now I just take what I can get and forget about the rest of it.
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Post  sailingmuffin Tue Apr 19, 2011 7:13 am

Hi All,

Thanks so much for the replies. It always helps to know I am not the only one.

Yes, the fainting is classified as Neurocariogenic Syncope/POTS/dysautonomia. I currently faint anywhere from 2-8 times a day. It is worse with the migraines.

As to the pain spiking quickly after an IV, yes I have had it before. Fortunately, it has gone back down some.

Sunday and Monday, it felt like all the emotions I have with this, that I usually try not to show at all came out and I just ended up in bed crying for awhile on Sunday and again on Monday. I saw my psychologist yesterday and he said that I probably just needed to cry and let out some of that emotion and that it was ok. I think he was right. This morning, I feel a lot better.

Anyway, thanks again for the replies., I don't know what I would do without y'all.

Pain free days,
sailingm
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