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MikeLaMarr

CPS???

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I went through med trials for pain killers and found a combo cocktail that helps.

I also get spinals with RFA

 

Anti Ds never helped but I was groggy, nunb. 

 

I am going to see if I am a candidate for

spinal stim.

 

Honestly this pain is hard to stop.

I am going for MRI to see what happened in my brain. 

 

There is hope.

Keep open and try options.

Whatever works.

 

This is hard I agree. But there is some combo out there that will help.

 

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 Ive just joined. Had an ishemic stroke 11/29/17 and have had immediate and constant CPS. My right face - including my tongue, jaw and eye,   arm and hand. Thankfully the right foot drop resolved. I tried gabapentin and Elavil and would sleep 16, 18 hours a day. That is unacceptable. Insurance just denied Lyrica and I've filled an appeal. In the meantime, I've tried acupuncture which helped with the constant headache, not the tingles. I see several mentions of Cymbalta and will pursue that avenue next. It is exceedingly disturbing to read that this could progress when  I've been clinging to the hope it would resolve itself. CBD oil was supposed to be a miracle relief and ended up being just another hole in the pocket. As mentioned above, sipping brandy isn't bad. You don't feel any better, but at least you don't care! (lol)

 

As for responding that I am 'ok' when someone asks.... I am not. I don't look any different on the outside, so everything must be great, right? Heaven forbid I actually say that this bites and I'm in constant pain. 

 

Thanks for the vent.

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Welcome, Superiorgirl!  Hope you find what you need here!

 

After my stroke, I decided to be positive but honest with people when they asked how I was doing, but soon realized that for most folks, it didn't matter what I said, they just responded how great it was that I was doing better.  I finally decided that they weren't rude and trying to blow me off, but that they cared and just didn't know how to show it, so they wanted to celebrate the good with me and kind of bleeped over the problematic stuff because they didn't know what to say to make it better.  I decided that each time someone responded to me with an inappropriate "I'm so glad you're doing better!" I would take that as them wanting me to be better because they love me.  I started feeling a lot more supported when I gave people credit for feeling helpless in the face of my crisis.  (Now, the people who give me the "What's your problem?" when I struggle with something?  That's a different story!).

 

Glad you could feel free to vent here.  Believe me, we all take a turn or two (or 100) at that!

 

Lisa  

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Most if not all people don't have the slightest idea what we go thru on a daily basis, hell I don't understand some of the things that happen or why, my wife included........................ she will say sorry if i'm tired, dizzy or feel like I just ran a marathon but deep down inside she does not know what to say so they say I'm sorry how you feel to be polite but this does nothing but make me feel worse than I did before.

I wish people would just keep quiet or maybe ask if they could help but this is our new life........... happy happy joy joy.

Ed

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14 hours ago, cons2g said:

Welcome, Superiorgirl!  Hope you find what you need here!

 

After my stroke, I decided to be positive but honest with people when they asked how I was doing, but soon realized that for most folks, it didn't matter what I said, they just responded how great it was that I was doing better.  I finally decided that they weren't rude and trying to blow me off, but that they cared and just didn't know how to show it, so they wanted to celebrate the good with me and kind of bleeped over the problematic stuff because they didn't know what to say to make it better.  I decided that each time someone responded to me with an inappropriate "I'm so glad you're doing better!" I would take that as them wanting me to be better because they love me.  I started feeling a lot more supported when I gave people credit for feeling helpless in the face of my crisis.  (Now, the people who give me the "What's your problem?" when I struggle with something?  That's a different story!).

 

Glad you could feel free to vent here.  Believe me, we all take a turn or two (or 100) at that!

 

Lisa  

Hi Lisa,

 

I haven't been on here much lately, but your message speaks to me. I hear that "so glad you are doing better" a lot. From hereon, I will try your positive reaction - they are saying this because they love me and do care. Now when you come up with a positive reaction to "what's your problem?" please let us know! I have tried to stop myself from always apologizing, but I would like a succinct (and a bit cutting) reply.

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I seldom tell anyone how I really feel, not much point in it because most have no concept of pain caused by a stroke that affects the extremities with no apparent injury. I have been noticing that my pain from the spasticity is both growing and causing the CPS to flare. I have an appointment with the neuro in a couple weeks so we'll see.

 

When people ask me whats wrong with me or what happened, I just tell them brain injury. They're going to figure that means I'm some sort of intellectually challenged but I'm OK with that because it usually shuts them up on the spot. :oops:

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Carol, I think the best response if you want something quick and cutting to answer "what's you problem" is "I broke my brain"  I use it when people ask what's "wrong with your leg" as that is the main thing people see with me. The fact that one arm doesn't work seems to escape most people notice.  So my answer to "what's wrong with your leg?" is "nothings wrong with my leg, I broke my brain." 

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13 hours ago, heathber said:

Carol, I think the best response if you want something quick and cutting to answer "what's you problem" is "I broke my brain"  I use it when people ask what's "wrong with your leg" as that is the main thing people see with me. The fact that one arm doesn't work seems to escape most people notice.  So my answer to "what's wrong with your leg?" is "nothings wrong with my leg, I broke my brain." 

Hi Heather,

 

I like your idea! Thank you. I will try your "I broke my brain response." Though as ScottM says "When people ask me whats wrong with me or what happened, I just tell them brain injury. They're going to figure that means I'm some sort of intellectually challenged but I'm OK with that because it usually shuts them up on the spot." 

Most people probably assume I'm drunk, anyway, from the way I move, and at this point in my life I really don't care two kadoodles what they think. When I am walking with a stick, I have had people lean over and start talking to me more slowly and not using words of more than two syllables. And isn't it strange how a dangling or pocketed useless arm escapes comment?

 

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Supergirl, a pleasure to meet you.

 

Yeah telling people how you really feel often grants you some confused looks and possibly some fast exists from a few but I mean you feel like saying ," what do you mean if I'm f*%king OK......I mean how would you feel when your entire world shatters and you hurt all the time?" :@#*%:

I have probably said part of that phrase once or twice, either out loud or in my head. We have always been taught to be polite and not unleash our emotion on others, for sometimes they don’t know how to react. Of course they don’t know how to react because who prepares for something like this. We have many people on this message board who also have CPS and can offer them great suggestions and advice.

 

We have a daily chats Monday through Friday from 3 PM-4 pm (EDT) and evenings every Monday, Wednesday and Fridays from 8 PM to 9 PM (EDT)

On Tuesday evenings, we have a caregiver’s chat that’s open to family and friends wanting to learn more about stroke and how to better assist and understand those who do from 8 PM to 9 PM (EDT).

 

I hope I have the opportunity to meet you for not only are these chats a wonderful way to gain insights and advice, they are also a great way to forget about the world and enjoy great company

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Yes, everyone wants us to be better!

 

I want someone to love me enough to say hey,if you just survive and do not recover, all is well.

 

I want someone to see the pain, before I tell some number like price is right contest.

 

I  need to be real, not better. I am better if I am listened to. Yea, I feel invisible when they want to try later, maybe I will walk more, be recovered.

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Thanks everyone. I am for the most part positive and upbeat. I understand that people are looking for positive news.

 

My stroke happened on my 3rd day of retirement. My position was very public and as a result I also get asked how I'm enjoying retirement. I feel like I have to wear a mask and pretend that everything is great. The fastest way to turn people off is to give anything less than a cheerful response. It might be easier to have some visual flaw, like a purple horn or a big bandage than all of these internal issues. But, I look great! (That's what is important right?)

 

I feel bitter. I feel like I was robbed. I feel like I gave everything for everyone else and I got left with the dirty dishes.

 

This is is still fresh for me, 4 months, and I'm working through my anger and grief.  It will get better. (Right?)

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6 hours ago, Superiorgirl said:

I'm working through my anger and grief. 

Everyone goes through an anger and grief stage following a stroke.  It is different for each person.  It DOES  get better but it depends a lot on your acceptance of the new you.  It also helps if you have a good support system, ie husband, friends and family. 

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YOu will make it better.

It is a fact that stroke does rob us.

It makes us even feel emotions more intense.

 

But fact is that we also survived stroke, which is a gift. Flip this coin. All time now is what would have been missed.

 

Sure our plan was different and we deserved, were entitled, but yet fact is we do not control stuff, our journey continues as senseless as it was interrupted or was it a different plan. Whatever you believe, YOU get more time. 

 

yes, and some days I say so what, others I am grateful for what I get to be part of.

 

I say I am disappointed, which softens bitter does it not, but lets me cry sometimes and grieve losses,changes. BUT I am here. Alive in this moment. Days turn into routines, regardless

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Conflicting opinions from neurologists make things interesting. One said my recovery time would be 2-3 months. (Wrong.) One said I will get better, may get well. 3rd one said where I am is what it will be. Reading here I see people have also gotten worse. How was it for you??

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My personal Dr said the 24 month is about where you will end up but my Nero Dr said it keeps getting better regardless of time  but both said don't stop trying

Hope this helps because I think most Dr's are full of it

Ed

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4 years later I continue PT, vestibular therapy, and all I can say is my first doc who was a internal medicine guy told disability that I would fully recover in 12 months. I eventually was approved for disability and found a neurologist who was honest with me about expectations. He said some things will have improvements over time and hard work, but other deficits are likely to remain as they are now. But he keeps me in therapy, because who knows how far I will go, and what things will continue to improve.

So I now see real changes, or I learn to compensate, and I hope and wish except I have no illusions that I will suddenly be cured and restored as good as new.

CPS has changed and pain is more intense, but is it because I get tolerant to meds..

but my dosage was not increased, they added RFA, because drugs only work so far....

 

I am better overall now than first year when symptom list was longer, more intense. Now fatigue, illness, stress, perhaps no reason at all, will bring on some stroke stuff more intense. 

 

I still cannot drive among other things.

 

But I go one day at a time.

 

So there is no formula, no timeline, nothing like a map or manual for recovery except the obvious common sense to be as healthy as you can with diet, exercise, keep medical appts.

 

I am kept busy treating underlying health problems too.

 

I wish for a magic wand of course, to go back to the day my life stopped as I know it, and the initial hope I was given is unforgivable. 

 

Yet hoping is healing, so I keep working on things.

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At 3.5 years I continue to improve physically. more coordination, better gait, improved dexterity but it has been a long road to get here and a longer one awaits ahead to continue to improve my physical and mental capabilities. One day at a time then one day you notice hey, I couldn't do that nearly so well before. For me the wife has been my cheering section who notices the improvements before I usually do.

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13 hours ago, edkel1 said:

My personal Dr said the 24 month is about where you will end up but my Nero Dr said it keeps getting better regardless of time  but both said don't stop trying

Hope this helps because I think most Dr's are full of it

Ed

 

14 hours ago, Superiorgirl said:

Conflicting opinions from neurologists make things interesting. One said my recovery time would be 2-3 months. (Wrong.) One said I will get better, may get well. 3rd one said where I am is what it will be. Reading here I see people have also gotten worse. How was it for you??

My experience from 2 1/2 years out is that most gains take place in the first 6 months or so, but you can continue to improve gradually over time. It takes harder work, though. For me, the anger and grief are the hardest beasts to manage, but that can improve as well, if we let it. It is also not a smooth path up; sometimes it seems like one step ahead and two back. Best wishes on your path, wherever it goes. 

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3 hours ago, SassyBetsy said:

4 years later I continue PT, vestibular therapy, and all I can say is my first doc who was a internal medicine guy told disability that I would fully recover in 12 months. I eventually was approved for disability and found a neurologist who was honest with me about expectations. He said some things will have improvements over time and hard work, but other deficits are likely to remain as they are now. But he keeps me in therapy, because who knows how far I will go, and what things will continue to improve.

So I now see real changes, or I learn to compensate, and I hope and wish except I have no illusions that I will suddenly be cured and restored as good as new.

CPS has changed and pain is more intense, but is it because I get tolerant to meds..

but my dosage was not increased, they added RFA, because drugs only work so far....

 

I am better overall now than first year when symptom list was longer, more intense. Now fatigue, illness, stress, perhaps no reason at all, will bring on some stroke stuff more intense. 

 

I still cannot drive among other things.

 

But I go one day at a time.

 

So there is no formula, no timeline, nothing like a map or manual for recovery except the obvious common sense to be as healthy as you can with diet, exercise, keep medical appts.

 

I am kept busy treating underlying health problems too.

 

I wish for a magic wand of course, to go back to the day my life stopped as I know it, and the initial hope I was given is unforgivable. 

 

Yet hoping is healing, so I keep working on things.

Sassy Betsy, I enjoy your posts. You are going through so much, yet you remain articulate and upbeat. You are an inspiration. Thank you.

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OMG, Carol, it means so much, thank you.

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