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ken27

CPS increasing

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My CPS has gotten a lot worse, I now have pain on the left side of my face, my upper leg, almost my whole left side , and chest. It is a numbing pain that feels cold. My left foot ankle and hand still feel like they are in a deep fryer dipped in burning oil. Last time I saw my nero he prescribed more gabapentine I have been on gabapentine for 9 years  and it is not helping any more. My quality of life is getting worse, everything is mush harder to  do now. When  I  walk it feels like i weigh twice my weight and sometimes i feel like the top of my head is going to  explode from pressure built up from movingaround it is scary.Has anyone else felt this pressure in there head. It does stop when I sit down. 

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Ken,

I can really feel for you, I know that ice-fire burn well. Never had the pressure in the head.  Gabapentin never did anything for me but fog my brain however the Cymbalta my neuro started me on a couple months ago was a godsend. I still feel it but it isn't so all consuming now.

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Ken. I can not even begin to understand how you feel but I know Steve and Sassy are two folks I know , know I lot about this. I'm going to look up things as well. I'm so sorry for this 

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Ken, Do you think that the cold weather may have something to do with it? I don't have CPS, but I do have tone and spasticity. They have both been irritating me more in the last week or so-since it has gotten colder here. I used to live in NYS, and if it's getting colder here in WV, I know that it's getting much colder in NY. Take good care, Becky 

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http://www.strokeboard.net/index.php?/forum/136-cps-discussion/ I hope while reading some of these you can find relief 

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Sorry to hear that buddy.  I know that my blood pressure goes up when I am in a lot of pain.  How is your bp?  If you don't have your own BP Cuff you might want to buy one at your local pharmacy.  I take my bp occasionally when I'm not feeling good. 

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Going to nuro on 12/12 hope things go well. The weather does increase my spasticity,change of seasons. My problem is that I am also affecting my good side because I lean on my right side more when I walk. 

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I am also taking care of my parents. The are now living with me. I cook every day but have been doing this for over a year. My bp is good, sometimes I just get get this build up of pressure on my left side and it goes rite up to my head. I sit down and it goes away but there is pain.

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On 11/22/2017 at 12:29 PM, ken27 said:

My CPS has gotten a lot worse, I now have pain on the left side of my face, my upper leg, almost my whole left side , and chest. It is a numbing pain that feels cold. My left foot ankle and hand still feel like they are in a deep fryer dipped in burning oil. Last time I saw my nero he prescribed more gabapentine I have been on gabapentine for 9 years  and it is not helping any more. My quality of life is getting worse, everything is mush harder to  do now. When  I  walk it feels like i weigh twice my weight and sometimes i feel like the top of my head is going to  explode from pressure built up from movingaround it is scary.Has anyone else felt this pressure in there head. It does stop when I sit down. 

To answer your question, yes, I also feel that pressure on the top of my head. Sitting down and trying to consciously relax does help a bit. Distraction seems to work the best, when I can manage it - usually in the form of a good book. I was diagnosed with CPS two years ago and it has worsened over that time. Your description of the evolving pain and heavy-feeling of the body is right on. I thought the gabapentin wasn't doing anything for me until I tapered off it. It's back now and the doctors consider me "maxed out" at 2400mg/day. Cymbalta has worked for others but I had a terrible reaction to it. The "cocktail" of medications will vary for each of us, as I'm sure you know. Yesterday I visited the Vascular Neurologist and his only suggestion was to marginally increase amitriptyline. Reading between the lines, there is not much more he can offer to help the pain. There are some trials going on and some experimental things happening for stroke recovery, but they are all for those who had an ischemic stroke; mine was a hemorrhage. So I am pretty down today.

 

You have a full plate taking care of your parents and dealing with CPS. Good for you to manage that, but please remember to take care of yourself, too. I could not manage here without my husband. And I live in frosty Northern New England where it was 11 degrees F this morning, and just a blast of air through the front door is painful. I don't know if my comments help at all, but just please know that there are others out there going through something similar and wishing you the best.

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I also have CPSP which has worsened over time.  It kept me up at night and made things difficult during the day.  I had a hemorrhagic stroke, and the Neurologist tells me that that CPSP is a product of developing scar tissue where the hemorrhage was.  I was also told that neuropathic pain like CPSP its very hard to treat.  We started with Gabapentin, but even after a few weeks it didn't seem to be doing much for me, so we backed off on that.  I'm started taking Lyrica, which after a few weeks of ramping up does help a little but also made me feel kind of high.  The medication that actually helped the most for the pain is something that I was initially really skeptical about.  I figured its the same doctor prescribing other medications, so I should give it a try...

 

I happen to live in a state where cannabis is legalized and my Neurologist sent me to an actual doctor specializing in cannabis research.  This doctor explained the two major components of cannabis; THC which is the part that makes people feel high and CBD which is a different component which is apparently where most of the therapeutic benefit comes from and is totally non-psychoactive.  I was prescribed CBD oils.  Of course my insurance wouldn't cover it, but I needed something and was willing to try this so I spent the money and I started taking CBD oil, 1mg, 3/day.  It surprised me how well it actually worked on CPSP, even by that next day the pain was lessened, and now the pain is still there but much less and somehow more "in the background".  I have absolutely no sense of feeling high or even off at all from the CBD oils.  While I used to say "Okay, ~medical~ marijuana", now I'm unsure how and why its been fought against for so long, this was far and away a better treatment than Gabapentin or Lyrica.  Now, if only I could get insurance to cover it...

 

If you have CPSP ask your doctor about CBD oils.

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30 minutes ago, Spiraled said:

I also have CPSP which has worsened over time.  It kept me up at night and made things difficult during the day.  I had a hemorrhagic stroke, and the Neurologist tells me that that CPSP is a product of developing scar tissue where the hemorrhage was.  I was also told that neuropathic pain like CPSP its very hard to treat.  We started with Gabapentin, but even after a few weeks it didn't seem to be doing much for me, so we backed off on that.  I'm started taking Lyrica, which after a few weeks of ramping up does help a little but also made me feel kind of high.  The medication that actually helped the most for the pain is something that I was initially really skeptical about.  I figured its the same doctor prescribing other medications, so I should give it a try...

 

I happen to live in a state where cannabis is legalized and my Neurologist sent me to an actual doctor specializing in cannabis research.  This doctor explained the two major components of cannabis; THC which is the part that makes people feel high and CBD which is a different component which is apparently where most of the therapeutic benefit comes from and is totally non-psychoactive.  I was prescribed CBD oils.  Of course my insurance wouldn't cover it, but I needed something and was willing to try this so I spent the money and I started taking CBD oil, 1mg, 3/day.  It surprised me how well it actually worked on CPSP, even by that next day the pain was lessened, and now the pain is still there but much less and somehow more "in the background".  I have absolutely no sense of feeling high or even off at all from the CBD oils.  While I used to say "Okay, ~medical~ marijuana", now I'm unsure how and why its been fought against for so long, this was far and away a better treatment than Gabapentin or Lyrica.  Now, if only I could get insurance to cover it...

 

If you have CPSP ask your doctor about CBD oils.

Thank you for your timely post. I also live in a state where medical marijuana is legal, though as I understand it there is a problem with the dispensaries. I actually asked the neurologist about it yesterday and he said he would research it for me. Two other doctors did not disapprove, but they could not prescribe it or tell me how to go about getting it to try. It is interesting how you explained the two components and how we might benefit from CBD without the THC. NH has a list of diagnoses that would qualify, as does every state I would presume; the closest I could determine is traumatic brain injury. It would seem this should apply but wonder if anyone has experience with these qualifications. Thanks again for your post, Spiraled. This gives me back a bit of hope... And I see you are new, so welcome!

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I was told about CBD oil from my daughters and asked my Dr's, here is what I got 

1. Talked to my personal Dr, have had him for 39 years and he knows me, delivered my 1st daughter and I got to cut the Cord and he let me deliver my second daughter, well he said to many unknowns and I should ask my nero

2. Asked my nero and he said he does not advise as he said it will raise my blood pressure and increase my chance for a second stroke, I did have a hemorrhagic stroke and I never want to go thru it again.

3. Asked my PT Dr and he said he had tried it but it did nothing for him, his idea was ask my nero Dr 

So what do you do I remember smoking pot in high school but remember hating it , is there an answer ........... Personally I don't think so............HELP this is just as bad as  having CPS

 

Ed

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1 hour ago, edkel1 said:

I was told about CBD oil from my daughters and asked my Dr's, here is what I got 

1. Talked to my personal Dr, have had him for 39 years and he knows me, delivered my 1st daughter and I got to cut the Cord and he let me deliver my second daughter, well he said to many unknowns and I should ask my nero

2. Asked my nero and he said he does not advise as he said it will raise my blood pressure and increase my chance for a second stroke, I did have a hemorrhagic stroke and I never want to go thru it again.

3. Asked my PT Dr and he said he had tried it but it did nothing for him, his idea was ask my nero Dr 

So what do you do I remember smoking pot in high school but remember hating it , is there an answer ........... Personally I don't think so............HELP this is just as bad as  having CPS

 

Ed

 

Hi Ed -

 

Just to your points:

 

1.  Many doctors don't have much experience with Cannabis.  Its been around for ages, but some of the understanding of it is just starting to come out.  My Neurologist said he has had patients with CPSP and other neuropathic pain tell him its worked well for them, but that he needed to refer me to a doctor specializing in Cannabis because he doesn't know enough about it.  I still see that Neurologist most of the time, just not for the CBDs.

 

2.  My stroke was also caused by blood pressure.  I monitor it with some frequency and track the results in spreadsheet to see trends.  I didn't see any change in my BP from the CBD oils, either immediately or long term.  But looking now, I can only find articles on it reducing blood pressure, including this one from the National Institute of Health https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5470879/

 

3.  My understanding is that CBD is very good for neuropathic pain, if your PT Dr doesn't have nerve or brain issues then it will definitely have a different effect on him.

 

I remember smoking pot in high school and how that felt.  I asked the cannabis research doctor about that, he told me that for decades people have been trying to grow strains for more THC (to get high) and didn't care if they reducing the amount of CBD.  Its only in the last decade or so have the started trying to cultivate for CBD for a lot of therapeutic reasons around seizures, cerebral palsy, and other neurological conditions - I use a primarily CBD tincture and its got none of the effects of when I smoked pot in high school.

 

In any case, I'm definitely sure its not just as bad as having CPSP.  For me CBDs work better than gabapentin or pregabalin.   They're an option people should explore. 

 

Your mileage my vary.

 

 

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2 hours ago, CarolR said:

Thank you for your timely post. I also live in a state where medical marijuana is legal, though as I understand it there is a problem with the dispensaries. I actually asked the neurologist about it yesterday and he said he would research it for me. Two other doctors did not disapprove, but they could not prescribe it or tell me how to go about getting it to try. It is interesting how you explained the two components and how we might benefit from CBD without the THC. NH has a list of diagnoses that would qualify, as does every state I would presume; the closest I could determine is traumatic brain injury. It would seem this should apply but wonder if anyone has experience with these qualifications. Thanks again for your post, Spiraled. This gives me back a bit of hope... And I see you are new, so welcome!

Hi Carol -

 

Thanks for the welcome!  Its good to be here as I have a lot of questions about other peoples experiences, and glad I can offer my experience for somethings.

 

Aaron

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Spiraled

Thanks for your comments but who do you listen too. 

Ed

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Ed you listen to everyone and then you decide for yourself based on if a consensus appears and how you feel others experiences match your own situation and risk profile.  The motto "first do no harm" can be helpful here.  it often comes down to the practicalities of what you can manage. Anyone who says "this" is the answer to everything needs to be treated with a degree of scepticism, especially if they will benefit from you choosing "this".

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Heathber

Well said but one daughter gets mad at me for not listening to her advice, oh well cant make everyone happy

Ed

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No you can't.  You may want to explain to her that there's a difference between listening to advice and following advice.  But lots of people seem to think that us stroke survivors lost ALL our marbles when we had a stroke when most of the time while we might have lost some things we also gained a new appreciation for others and our priorities in life are not what they used to be so we don't always do as people expect us to.  So your decision will be based on other factors than those your daughter may understand or like, but that doesn't make your decision any less valid.  You are a grown up and she needs to let you make your own "mistakes", just like you let her make hers.

-Heather

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On 11/22/2017 at 12:29 PM, ken27 said:

My CPS has gotten a lot worse, I now have pain on the left side of my face, my upper leg, almost my whole left side , and chest. It is a numbing pain that feels cold. My left foot ankle and hand still feel like they are in a deep fryer dipped in burning oil. Last time I saw my nero he prescribed more gabapentine I have been on gabapentine for 9 years  and it is not helping any more. My quality of life is getting worse, everything is mush harder to  do now. When  I  walk it feels like i weigh twice my weight and sometimes i feel like the top of my head is going to  explode from pressure built up from movingaround it is scary.Has anyone else felt this pressure in there head. It does stop when I sit down. 

 

Hi,

 

My CPS has morphed into a non-stop, sometimes squeezing-burning-aching pain that increases with use of that arm/hand.  When I had the hemorrhage I still had use of all my limbs; the right side was weaker, and although sensory deprived I used my left a LOT!  Any type of pressure now brings on the pain, I can no longer lift that arm to shoulder level.

 

I haven't had the feeling of pressure in my head; it sounds terrible!  

 

I once tried gabapentin, but all it did was fog my brain.

 

(Me thinks more PT might help)

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Going to nuro on 12/12 hope things go well. The weather does increase my spasticity,change of seasons. My problem is that I am also affecting my good side because I lean on my right side more when I walk. I am going to ask my nero  about medical cannabis, in NY oil is all that is legal and not covered by insurance but I will try it if I can. I broke my right shoulder 3 years ago and took 2 7.5 pain killers a day, for about a year this did help me move easier and reduced my cps. UNFORTUNATELY in todays world it is tuff to get opiates but I am maxed out on gaba and it now gives me mood swings. I'm  going  Tuesday  any advise to share with my nero would be helpful she is not that familiar with CPS.

Thanks 

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