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Old 12-08-2005, 12:58 PM   #1
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NavyMom0512 HB User
Question Nerve Pain

I am 49 years old and suffered a stroke on 07/11/05. I had 100% blockage of my right carotid artery and 85% blockage of my left. I have since had a stent placed in my left carotid to open it and keep it open. I have re-gained the use of my left side for the most part, after months of therapy. My left hand is weak and zippers and buttons are difficult but I manage. I have limited feeling in my left side.

I suffer from severe nerve pain in my entire left side, basically left side neuropathy. My doctor has me on the highest dosage of Neurontin allowed (3600 mg per day), and it barely dulls the pain. My skin feels burned and someone is rubbing a SOS pad on it 24 hours a day. It hurts to put on clothing. Even my scalp hurts when I shower.

Has anyone else had this happen to them after a stroke? I went back to work 2 months after my stroke, but I don't know how much longer I can hang in there. My family is trying to talk me into going on disability but I really want to build up my retirement a little more if I can stand it.

Any advice would be welcome at this point. My doctor is sending me for another MRI and back to my neurologist, but I don't hold out much hope. I don't think they understand how much pain I am in. I don't want to be drugged to the point of not being able to function and that seems to be their only option.

Thanks in advance for any advice.

Last edited by NavyMom0512; 12-09-2005 at 08:37 AM.

 
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Old 12-09-2005, 08:39 AM   #2
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Re: Nerve Pain

Anyone? I can't possibly be the only person this has happened to.

 
Old 01-07-2006, 10:49 PM   #3
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Re: Nerve Pain

HI
I had a artery disection and stroke in Aug 2004. I was 26. I am going through the same type of neuro pain. I am also on a high dose of neurontin. I know exactly what you're describing (burning, hot/cold sensations, stiff painful joints and more).

I went back to my accounting job 3 months after my stroke, and had to quit after about 3 months of work. Maybe I went back too soon, but I really didn't have a choice. I am still struggling to hold down a part time job.

My Doctor had me try Elavil in place of nuerontin for a few months because the Neurontin was having little effect. Elavil gave me bad headaches though. I didn't stay on it long. Maybe you can talk to your Doctor about it.

I feel for you and know what you're going through. Let me know how you're doing.

John

 
Old 01-10-2006, 05:37 AM   #4
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Re: Nerve Pain

What you are describing sounds like central pain syndrome.Was there any sort of affectation of the thalamus in your brain at all?I suffer with the central pain due to a spinal cord injury(one of many seperate injured areas) but my actual thalamic tract inide the cord was damaged.this tract and the thalamus governs hot cold and pain.i actually came out of my sp cord surgery with this.I did not have it just five hours before.it is like having a second degree burn that never heals.stinging burning hypersensitivity to touch,even the air blowing over it will send it into hellish pain ranges.I have this from just before my mddle finger in my palm and up through specific areas of my arm at and around the elbow area inside and at the back are the worast.but this area also has like just 'dead' areas too.just total and complete solid numbness.This also goes up my arm and around the back to over both shoulder blades.This is,as I am sure you know,incredibly hard to treat.

i would highly reccomend seeing an actual pain management doc to try and get the best possible treatment for this.I have five actual seperate pain generators and pain syndromes that were all caused by my spinal cord surgery and specific damage to certain areas.I don't know what I would do without my pain doc,really.depending on just what was damaged from the stroke and or any procedures that you had to have,there is always the possibility of nerve damage.somewhere,you have deefinitive nerve damage in order to have actually contracted this type of a pain syndrome.there are many many people who have had strokes who end up with the same exact type of pain syndromes that you are dealing with.it all just depends on the specific type of nerve damage you incurred.
Have you ever tried the lidocaine patches?this really does help me in the worst spots.nothing seems to actually work to really effectively drop that pain level down into the tolerable range but there are ways to at least take the edge off.certain meds will help.Methadone works rather well on this type of pain and could work for you.tricyclic anti depressants like elavil.there are others besides the elavil if that particular tricyclic does not work for you. what you, NM, are describing also could involve specific damage to your ulnar nerve somehow??with my central pain I also have a severely damaged c 8 nerve.the ulnar.while you do not actually have a c 8 vertebre,you DO have a c 8 nerve.it runs down thru parts of your arm and into the hand.I also have huge problems with buttons and any of the more fine motor functions,this sounds like what you may have as well.it does appear that you have a loss of muscle innervation that would show up as muscle atrophy?this develops over a period of time.it took about six months to a year before I actually started seeing certain areas of my hand start to just get smaller.this is loss of the fine motor(intrinsic )nerve and muscles.

I know how much this all sucks,believe me,I also had to spend about a month right from the hosp where i had the actual surgey and transported to an acute rehab hosp where I needed to try and regain the actual use of my L leg and try to get back as much as possible in my fine motor in my L hand.i had much better luck with the leg than the hand.do you have any curling of any fingers or actual clwing of your hand?i had the clawing thing right post op that came along with the central pain.

getting to a good actual pain management doc at an actual pain clinic really would be the best way to go here,really.they have many many other modalities to use to actually try and get some control over this type of pain.This requires this kind of a specialist as most primary docs really do not even understand this type of pain let alone actually be successful at any level in trying to actually control it in any real way.the PM docs can also try using certain types of blocks and can send you for what is called desensitization therepy.this helps to lessen the hypersensitivity of the actual suface pain you feel.one thing though,as time goes on with this(I am now just past the two year mark with this crap)i have seemed to have kind of adjusted to it a bit better?I am not sure in just how or why but though it it is always there 24/7 and it does really give me some good flares,I seem to be able to now,not have this feel like it is just constantly screaming at me and always there in the forefront as much as i felt it when it first started.But I also have other very severe pain in other areas and maybe that has something to do with it?I feel what is screaming the loudest at that time or something. try doing some research on central pain syndrome and see what really compares to what you are actually feeling here.the MRI is really a great idea.see if there is any amage to the thalamus or the spinothalamic tract in your cord at all.the damage to the ulnar(c 80 possibility should be checked out too.I would really get the MRIs at the brain and c spine levels to really give the best picture of what may possibly be going on in there.Good luck and please keep me posted on how things are actually going,K?i know this sucks but you know you are not alone in this,and that helps alot.amazingly there are thusands and thousands of people out there who also suffer with this and don't have a clue as to why and are told that it is all in there head.appalling but true unfortunetly.you need to let your doc and any docs that will treat you,just how really really horrible this is to try and live with.sometimes you may have to get icky with some of the more condescending ones but you HAVE to demand treatment of this.you are your only advocate in this and the one who has to live with this and you DO deserve to have this treated appropriately,nd your best chance at that is with a good PM doc who knows all of the right stuff to do for you.once I was placed on oxycontin by my PM,this helped ALOT to help me to kind of ignore it somewhat??the OC really helps alot with allof my other pain too.this really IS a wonderful med for us chronic pain pateints and is totally safe as long as it is taken as directed.Right now,iwould not even be able to actually get out of bed and really function at all without it.let me know just how things go.Good luck and hang in there,Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 12-12-2006, 04:14 AM   #5
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seattlejavagirl HB User
Re: Nerve Pain

I have had a similar experience: I had an iscemic stroke, which affected the right side of my brain, so the left side of my body was affected and completely paralyzed. I couldn't sit up, raise my hand, walk, or many other activities, etc. I also couldn't see very well--I had terrible double vision, since one eye is affected, and doesn't work properly with the other. I had total numbness in several areas including my side, face,shoulder, ear, and part of my tongue, lips, and mouth ( followin a line going through my body.) I was in and out of the hospital, nursing homes, but did not get good physical therapy, so I pretty much did it on my own, but have progressed to where I can stand, raise my arm briefly, see better, etc. I still can't write (I am left-handed.) I also can't drive, since I can't see werll enough to be safe.

However, a couple of weeks after coming home, about 5 months after my stroke, ever, a couple of weeks after coming home, I developed that cold-hot pain on my left side. It seemed to be in the areas that had been numb--as the numbness went away, the pain began. It have it worst on my face, ear, and nose, but it's also down my arm across my hand, which never stopz feeling cold. If I don't take the Lyrica on time, it will go down my throat, and also my rib cage, shoulder and back start hurting. I, too, have a hard time with water hitting my scalp, which is extremely sensitive--it feels like the small muscles trhere are tightiened up, which I believe is happening to my left side in general.The area asround the affected eye feels sore all the time.
Luckily for me, my PCP doc was familiar with stroke, and had worked in a stroke rehab center as a resident, so he knew about that kind of pain and ways to deal with it. He gave me Lyrica, which is similar to Neurontin, but with fewer side effects to get to a certain level of pain relief. He also put me on pain patches (Duragesic, an opiate) but I have found that opiates alone don't work that well--I have run out of the Lyrica, and the pain quickly gets worse. I had problems with dizziness at first, but got used to that after a couple of weeks. I really recommend it. There is lots of info if you do a web search, too, if you want to check it out. It is quite new, and there are no generics, so it's still expensive.

I think this type of nerve pain is relatively common, but they (doctors) don't tell you about it, hoping that it doesn't develop, so you won' ask for OPIATE DRUGS. I havew heard from a friend about an elderly relative who just kept one arm in a sling sort of thing for years, unused. I feel like doing that sometimes, since it feels cold and hurts, the instinctive response is to hold it close, but that can lead to the mucles becoming tightened up, and worse pain.

Good luck--I hope you can find some solutions here-there seem to be some very knowledgeable people. Take care, Sherry

Last edited by seattlejavagirl; 12-12-2006 at 04:44 AM.

 
Old 03-04-2007, 06:21 AM   #6
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mymimi HB User
Re: Nerve Pain

Quote:
Originally Posted by seattlejavagirl View Post
I have had a similar experience: I had an iscemic stroke, which affected the right side of my brain, so the left side of my body was affected and completely paralyzed. I couldn't sit up, raise my hand, walk, or many other activities, etc. I also couldn't see very well--I had terrible double vision, since one eye is affected, and doesn't work properly with the other. I had total numbness in several areas including my side, face,shoulder, ear, and part of my tongue, lips, and mouth ( followin a line going through my body.) I was in and out of the hospital, nursing homes, but did not get good physical therapy, so I pretty much did it on my own, but have progressed to where I can stand, raise my arm briefly, see better, etc. I still can't write (I am left-handed.) I also can't drive, since I can't see werll enough to be safe.

However, a couple of weeks after coming home, about 5 months after my stroke, ever, a couple of weeks after coming home, I developed that cold-hot pain on my left side. It seemed to be in the areas that had been numb--as the numbness went away, the pain began. It have it worst on my face, ear, and nose, but it's also down my arm across my hand, which never stopz feeling cold. If I don't take the Lyrica on time, it will go down my throat, and also my rib cage, shoulder and back start hurting. I, too, have a hard time with water hitting my scalp, which is extremely sensitive--it feels like the small muscles trhere are tightiened up, which I believe is happening to my left side in general.The area asround the affected eye feels sore all the time.
Luckily for me, my PCP doc was familiar with stroke, and had worked in a stroke rehab center as a resident, so he knew about that kind of pain and ways to deal with it. He gave me Lyrica, which is similar to Neurontin, but with fewer side effects to get to a certain level of pain relief. He also put me on pain patches (Duragesic, an opiate) but I have found that opiates alone don't work that well--I have run out of the Lyrica, and the pain quickly gets worse. I had problems with dizziness at first, but got used to that after a couple of weeks. I really recommend it. There is lots of info if you do a web search, too, if you want to check it out. It is quite new, and there are no generics, so it's still expensive.

I think this type of nerve pain is relatively common, but they (doctors) don't tell you about it, hoping that it doesn't develop, so you won' ask for OPIATE DRUGS. I havew heard from a friend about an elderly relative who just kept one arm in a sling sort of thing for years, unused. I feel like doing that sometimes, since it feels cold and hurts, the instinctive response is to hold it close, but that can lead to the mucles becoming tightened up, and worse pain.

Good luck--I hope you can find some solutions here-there seem to be some very knowledgeable people. Take care, Sherry

 
Old 03-15-2007, 01:01 AM   #7
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Magiklady HB User
Re: Nerve Pain

Yes i had this nerve pain after stroke. All down my right side, My doctor didnt seem to believe me when i was trying to explain how it felt.However i was lucky, the pain mostly went away and i just live with the rest.I hope your pain goes away as well because i remember it well. that was five years ago.

 
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