A close friend of mine had a stroke about 8 months ago. He has pain in the right side, and nothing seems to help. he is not able to work due to the pain and not able to move very well.
He is on Neurotin and pain meds, muscle relaxers they do not help very much, he is depressed and on a antidrpessant but his life has changed so much, I think he just feels hopeless.
Has anyone suffered this type of stroke? And seen any improvement in the pain?
is his overall pain 'mostly' intense like 'stinging' or feel like a second degree burn that simply will not heal that also retains this insane level of hypersensitivity to esp light/a stroke of the skin touch vs pushing like a thumb into it actually bringing actual releif? or even a light breeze blowing over it setting off a flare? if so, what he actually has is called 'central pain syndrome" also known as 'gamma pain'? and it IS also called "thalamic pain' too. over time, this insane type of pain simply 'does' feel like it just becomes 'your normal skin' in a bizarre way? it is not under it, on it or IN it, its just 'your" skin, in THAT affected area. very very hard to try and explain unless you actualy feel it?
unfortuently this type of pain is an absolute BI*** to try and treat. but after a certain period of time, the level of the person 'constantly' recognizing it like they would at the very beginning starts to kind of 'set in' in certain ways as the brain tries very hard to help us to simply 'live with" this hell by accomodating it for us and also somewhat disassociating us FROM it in certain ways within our brains? while it is STILL there, but in our own brain responses, it does help us with disassociation from it. while historically, narcotics will not make a dent in that overall level of hidious pain, they can and do also have the capability to help us to disassociate from any real pain(so in only THAT regard, they CAN actually help at least 'some'). that just IS what part of the real overall mode of action narcotics simply have that helps any given person 'deal' with pain overall.
i am willing to bet, from the very DAY he first 'felt this crap just a stingin away which feels like a 100 plus on the old ten pain scale, to now, he HAS done at least "some' level of accomodation already. its not something now that he would constantly be going like owe owe owe, vs before, when it initially hit, like when you JUST get a bad sunburn and also try lifting your shirt off the 'burned area" becasue even THAT causes real pain? its kind of the very same thing with central too, but this crap does not just go away and heal a few days down the road unfortunetly. when anyone simply asks me what my central 'feels like' i usually will tell them it feels like a really bad second degree burn, with the raw skin after the blisters burst, like times at least 20, that simply never heals. it also behaves to touch(EXTREMELY hyper to touch, and pain response) in the very same way as a burn does or air blowing even gently for me will set off flares too.
this type of pain simply becomes generated in some people who not only suffer a thalamic type stroke, it also occurs, as in my case, with damage to the spinothalamic tract that RUNS to the brain and also does carry our main pain pathway to the brain as well where all pain signals just end up and get 'interpretted'. so everything as it is trying to 'sort out" real pain signals, tends to become pretty 'deranged' in there as to how our brains even 'deal' with pain signals sent after that type of injury even interpret pain signals at all.
i actually awoke in the recovery room after my spinal cord had to be cut into WITH this hellish sting from hell that i thought there was NO freakin way i could EVER possibly tolerate THAT level of pain. it actually fired itself up while i was STILL under flippin anesthesia. they did have to more over sedate me(it WAS intolerable and all i could do was just thrash around back and forth in that bed. not a good thing when post op spinal cord surgery) then more than try and use any level of narcotics for THAT one specific pain, while the narcotics helped with the other 'very severe post op pain' i was told i would just 'have' with the type of spinal cord cutting into i would be having. i simply 'assumed' that the central WAS also just a big part of MY post op pain til i was sent to a rehab facility and while other pain was getting better, this crap which i still today have in and around my elbow and down inner side of my L forearm kept getting more pronounced. and also back at the beginning there was also a huge 'strip' that went across both of my shoulder blades too. my central actually follows both the c 8 and T 1 dermatomes. and also very much my spinal cord injury level too where they went into it, go figure.
in certain cases, if you do NOT constantly keep this covered with like lidocaine patches(i use those only for flares but they DO numb REALLY well)you CAN possibly get this to somewhat 'remit' itself to a degree over time just "allowing" clothing to touch it among other things repeatedly(it IS a daily and ongoing process to try and desensitize this. while it DOES really hurt, you seriously HAVE TO do this in order to get anywhere with this crap). my blades actually DID manage to somehow desensitize themselves a couple of years ago, but unfortuently that elbow forearm crap is still a zingin.
has he tried the med lyrica at all? after trying sooo many different types of meds(alot of the more anti seizures appear to be the best bet in getting something to actually 'connect" with this crap) over many years since mine hit 'during' my freaking surgery 2003. the ONLY med that even actually for the very first time 'touched' this horrid pain was the drug lyrica(cymbalta actually made it much worse for ME personally. no clues why there). do NOT know how or why, but lyrica DID actually appear to capture it and knock that ugly edge off to bring it down at least a point or two. unfortunetly for me, it also tends to hit the cerebellum hard too which is another spinal tract(spinocerebellar) that became damaged during that same surgery and the 'symptoms" of THAT damage got ten times worse. it was my balance, my overall gait, also could NOT for the life of me even walk down the middle of the hallway in my house and kept veering off to the left. my vision also started to go up and down double, and not more common side to side doubling, BUT ONLY while on lyrica? it was crazy what this did TO me. but it DID also do FOR me with not just the central pain but another ugly pain syndrome called RSD also generated by that sick surgery when they hit my sympathetic nervous system. life IS fun sometimes.
knowing if he has at least given lyrica a shot would help since this really was the absolutely ONLY med that hit and reacted at all for me with central pain. i would have loved to have stayed on it for more than three weeks just to really see/feel what it may also have done for me, but the side effects were too intense simply for ME. he may not have that or any side effects from it. you just have to try stuff and see how it goes. and those lidocaine patches have been an absolute godsend when things really hit the fan for me. i just choose like i said above, not to wear them constantly for a couple of reasons. number one, like i told you, they just can make it much harder to even try and desensitize this crap. and number two, if you keep ANY area of our skin simply 'covered' like even a few days, even with what happens with even using a bandaid over an area and you take it off? you just WILL have a much higher level of real "over" sensitivity for a day or two til the skin gets used to touch again. and believe me, lido patches WILL do the same if not used ONLY when things are way too over the top since i know this crap does tend to have its own way of flaring. so the lido for me ONLY gets used when intolerable hits the picture. the patches are actually called 'lidoderm 5%".
but they DO also make a lido ointment too that is the very same 5%? its just not AS quite as effective as having a patch set ON the area from a source and constantly delivering to the skin? but it CAN help to take edges off and still help desensitize since that skin is simply NOT covered? my TENS unit too also helps to distract from the sting by simply generating another 'sensation" to kind of meet it, then i pop it one notch over that 'meeting intensitiy" of the central to try and simply override THAT pain level intensity? it does help too.
if you do some research ON "central pain syndrome" or thalamic pain syndrome it should bring you some good info. central pain is probably the best term to look under tho. this is just such a very 'out of the box' type of pain to have that it DOES take at times, some pretty out of the box types of help/therepies just to even TRY and get this down to a tolerable level. but as i said, time WILL help too.
i really DO feel sooo badly for your friend srak. i know how really horrid this type of pain can be and how it can also just shut you down too til you CAN at least come to grips with it. but the suggestions i gave here are the main things that HAVE truely helped me to try and deal with and live with this level of stinging nightmare that a damaged pain pathway/area of pain signal interpretation can generate. i would not wish this hell on my worst enemy. but it WILL take some time for him to just even try to accomodate this crap in his brain and to disassociate from it at least to 'some degree too.
if he at all in some type of real pain management facility or being treated by someone else? a good PM program that offers many different modalities will definitely help HIM the most right now. if worse does come to worse and esp if he tries that TENS unit(it has to be given and worked with thru a good PT person so they know specifically how to work it for 'their' own pain) a spinal cord stimulator can also be used to manage this crap too. but i would place THAT down the road some until he has at least tried various other possible options first. i DO hope this helps some. if you have any other questions, just hollar,K? marcia
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.
Thank you so much for the response. He has done tons of research, so have I. Its all kinda disapointing. I do not think he has tried a few meds that you mentioned so I will pass that along.
You basically stated exactly what he feels, and it seems he is getting used to it or dealing with it, but its just awful to see someone you care about in so much pain. It sounds like you have dealt with alot yourself and Im so sorry-
Hearing from a real person instead of just reading info just seems to help, you know someone else is out there with the same pain you are feeling, makes you feel like your not nuts.
My understanding is not many have this type of stroke.
Thanks so much for taking the time to respond I will pass on this great info!
no problem srak. i just really hate to hear that anyone has ended up with THIS level of what just is a non stop 24/7 all encompassing pain(it is considered to be a very 'noxious stimuli'. while like you said, even HAVING the thalamic stroke at all IS more rare, ending up with central is much more rare. more people appear to get central the way i did, by having a "left posteriolateral spinal cord injury" that damages that pain pathway within that spinothalamic tract. thats all it takes. what i am also wondering here since this too is somewhat of a possibility with the thalamic being involved? does he have one side of his body where he has no reaction to hot or cold(exactly how were his legs post stroke, okay, or did one side appear much weaker)? its also possible to get something called "partial brown sequard syndrome" too with thalamic damage. but this would usually be there around the same time the central would have popped in as well, or pretty shortly there after? this particular 'area' of the thalamic just does interpret not only pain but temp too, so it can also 'scew" response to hot cold and not being able to actually 'feel" pain to a certain degree, but of course as with central, in a rather bizarre way too? like going from the outside in, and loss of inner sensory markers too. but this is more common with the spinal cord version of thalamic injury and not so much within the thalamus within the brain. just a 'possible". at around day 16 post op, while in the rehab facility i transferred to, we realized i simply could NOT for the life of me actually feel the difference between hot or cold, then later, actual pain and was told i would NEVER ever feel pain on my R side below my level of injury. that WAS until what IS a totally sympathetically(by the sympathetic nervous system alone being damaged) pain syndrome called RSD decided to descend upon me too. now THAT i CAN feel only becasue it is not running on the 'normal nerve circuit", but generated by 'only' damage to my SNS which created RSD too. tho your friend would not HAVE that occur, it did change what i was originally told about never ever being able to 'feel pain" on my BS side at all. he just needs to always be assessing, at least thru the initial year, ANY sign that his ability to actually feel hot or cold is being impacted. if nothing shows up by then as a real 'change' in him, he wont have THAT also set in too. enough IS enough alone with just even having that central to deal with.
just wondering how large of an area he HAS the central in? you mentioned the 'right side' but not specific parameters/borderlines? it should be within some level of 'borders, like if he just felt this with his finger where that line has it, then does not have it, he could actually mark this whole area 'out' with like little pen marks(that full area of affectation just should also just be kind of 'mapped out" for medical/giving baseline purposes too)? i am just curious if this actually randomly 'hit a spot" for no apparent reason, or it is running at least within a particular dermatome but usually would run only to midline(to the 'halfway point/middle of his like chest or stomach. our brains also tend to run damage in a 'hemi" fashion too with certain things)?
when i decided to 'map out' my central in my arm, that is when i found out it followed the c 8 and T 1 dermatomes/borders of those two spinal innervated segments, and absolutley to a T too, 'just" those areas specifically and where they happened to also run across that strip on my upper back as well. i am wondering 'how'(and 'have" always wondered) when this is generated strictly by a thalamic stroke, exactly how and why the area that ends up with this hell actually even gets hit with it kinda thing? like what makes it appear even IN any specific spot at all(is there "something' that actually connects THAT area specifically to the thalamus)? i have simply never known of anyone i could ask who got this stinging hell syndrome FROM only thalamic stroke, not at all cord related. the people i have chatted with over the years pretty much all got this crap from a left sided hemicord injury like i did.
it just would be a really good idea for his sake, and for alot of different reasons, for him to actually FIND his particular borders and mark them, then see if you can get that captured on film in some way? this would be a 'baseline' of where this was at the beginning which would be able to really see/tell over time if it IS even starting to desensitize from what WAS that beginning baseline at all(at least from borders on inwards)? just good documentation.
i forgot to ask this before. but did he have ANY other real damage symptoms or even temporary disabilitys or deficiencies show up post stroke? or is this 'just' central pain he showed at all? it does matter.
but the one thing i do know about central specifically, unlike say, my RSD and other potential syndromes that CAN and DO very much spread to other areas, is once that central simply 'sets into' a specific area, it will NOT actually spread to other areas. it, for some reason just kind of 'overtakes" then sets into that area alone and stays that way. so that IS a really great thing for him.
but DO see if he can try the lyrica srak, seriously, this really DID help alot, and i took this years after my cord injury set in(my trial with it was around like 05-06? and my actual date of injury was 9-22-03) where his is more 'newer' in his skin, it "could" make a huge difference in even getting this to go away possibly or at least calm down some to make it much more tolerable too. with alot of more actual 'pain syndromes' the much sooner and harder you 'hit it' with various meds/therepies, the much better chance overall you simply also have in getting it to remit, desensitize or reduce in total area of affectation too. tho i am in no way saying this IS a 'given' since i am not a doc, its just how i have seen/heard of other peoples stories and some of my own experiences in dealing with insanely generated pain syndromes from damage to any part of our overall CNS(the brain and cord together) 'appear' to actually work in our bodies.
again, i am sooo sorry he even has to live with THAT incredible level of pain(i am hoping this IS a rather smaller area and not huge), but hopefully something he can try WILL help him to better deal with this and also regain some of his life back too. i seriously would take a good trial look at using lyrica and trying that TENS unit for his pain. these two things i really do think would help him the most(and of course using lido patches for flares ONLY). this type of pain REALLY does NEED distraction to best even try and tolerate it, and that TENS is exactly what this does for his brain. it simply generates another signal that distracts(fools) the brain into honing in on "IT", vs him totally being centered ON that crap that IS screaming at his brain FROM that central even being there instead? do ya know what i am trying to say there hon? this really just does also make soo much basic common sense. as they say: if you want to 'distract" yourself from like a severe backache pain, just slam your big toe with a hammer and it WILL distract your brain FROM the original pain source(sounds insane but very much true)? using an electrical signal that you DO set up to try and run 'thru' that pain area, it just DOES seriously help me from feeling like my RSD esp when this flares?
if per chance when/if he does at least try that TENS unit, it just, in some people, and certain types of pain can make this feel a bit worse, esp at first? if that actually occurs have him try and run it close to it as possible at its borders. what is most important in 'this' type of pain situation is that he IS simply 'feeling' an electrical impulse that feels 'stronger and then over rides that overall intensity level OF the central pains intensity level. this IS why this unit just helps with so many different types of very real and at times intensely severe pains the human body is even capable of generating. it overrides(if ramped up high enough to actually 'meet" intensity then bump it up at least one more notch above that) the intensity levels if you can simply get those electrodes placed right, to criss cross "thru" the pain area is best, so the brain WILL 'feel THAT' usually much more strongly than the actual pain intensity. i LOVE my TENS, alot.
but as i mentioned before, if he decides to actually try this, it most definitely NEEDS and has to be set up and all the stuff he needs to know about the tens, thru a good PT who deals with setting people up with TENS units for the best possible placements for HIS particular pain, and what they are trying to accomplish. that PT person just knows the best placements for the right types of pains. and in most cases, like mine was, you start using this by paying like a co pay every month like 'renting' the unit first(but you usually obtain this FROM that same PT facility). this just allows the patient to 'try it' to see if it even works before having to spend more money just having to buy it so you just CAN even try it first?
hopefully he IS in some type of actual pain management facility with a good pain care doc who has the ability to simply try MANY more different types of modalities/therepies and also rx different types of meds to just see what will help HIM the best with trying to keep THAT level of intensity down to a much duller roar. he IS also VERY lucky too to even have such a great friend like you to help him to deal with this 'sudden nightmare' in his life too srak. i DO hope things get better for him, and sooner vs later. you just never know with this kind of thing exactly how it will play out. but hitting it with everything and anything that may have a chance of working sooner, is ALWAYS going to give the best possible chances of either at least working better ON the pain, or even reducing it down some. good luck hon, and DO please keep me posted,marcia
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.