You have Central Pain Syndrome.Your form, Brain CPS, can be treated fairly successfully with anticonvulsants such as gabapentin or Lyrica. You may need to try a few in order to find one that gives you the best relief. These drugs change the levels of neurotransmitters (like GABA) in your brain, so you will need to gradually raise the dose until you hit the one that serves you best. Most CPS patients are on 2400 -3600 mg a day, taken at 6 hr intervals. You will also feel sleepy the first few days of a higher dose, but that passes.
Most doctors do not know anything about it, and think that you are seeking narcotic. Narcotics will only help the pain by narcotizing you - putting you in a stupor. So you are definitely *not* interested in them.
If you look for the Wordpress website of the Central Pain Syndromes Foundation, you will find some material "For Medical Providers," which you can print out and bring to your doctors. It was written by a medical professional , and has the language and references that doctors love. Remember that we, the patients with CPS, usually have to educate our physicians about CPS. The disease is only now beginning to be recognized, even though it has existed for centuries. If you feel strong enough, you might be interested in working with us at the CPSF to get the word out!
I had a stroke when I was 24 (pretty massive one, left side of brain, and a few TIAs(mini-strokes) afterwards, and am 29 now. A long latency period between stroke and the on set of post-stroke pain snydrome threw myself and family and my local hospital for a loop. There is very little information about this syndrome. The doctors here looked at me as a "drug-seeker" when Id show up to the ER with 8-10 pain levels and no visable physical damage to the areas I was in pain in. Theyd give me a few vicodins (which do absolutly NOTHING other than make me dizzy) and send me on my way. I finally went back to my neurologist and he was able to diagnois me with post stroke pain syndroe. It is very hard to get a proper diagnosis, but even if you do, worse still IF medicines like Lyrica and Anmitriptyline doesnt work, your basically stuck with horrible pain for the rest of your life, (in some cases the pain vanishes...not in my case)
I tried acupuncture, but the needles give me such bad pain in the effected area, and thats it. I went several times, hoping for even 10% releif but it never came. Its life changing. I find stress to effect the pain directly. However, with all the negative changes that come wih a stroke, it is almost impossible to not be stressed. I hope that people out there are able to find relief. The only relief I get, cant be prescribed, and no pharmacy can fill it. It being a good support group, a loving family and loving back. The distraction of a good conversation with my wife or a close friend etc. etc. Also you can be your own advocate. You know the pain in your body more than any one else does...dont be ashamed to talk to health care providers about the pain, until you find something that works. Pain doesnt mean weakness. Ive been doing so for the last year, and I will continue the fight until I die or find something that helps. I wouldnt wish this on my worste enemy, and I hope everyone out there are able to find somthing that works for them, as much as I hope to find some relief myself.
Do you mean like stroking the skin of the affected area?
Hi, my name is Sheryl. I have had 3 different strokes all on the right side. I don't remember all the places but the thalamus and pons were involved. I have CPS and Clumsy Hand Syndrome (from the damage to the Pons). My original stroke was 5/19/01. Believe me at that time they knew nothing or next to it about any of these syndromes or what to do about them. My neurologist had never heard of it . I found it on the internet myself. I wasn;t treated for any pain for years until 1 year ago when I went to pain management out of desperation. Went for the first appointment and he saw me and listened to me and said Wait here just a second and came back with a internet print out on CPS. I finally had my answer (thank God!!!) I am on Neurontin 3 times a day; Morphine control release 2 times a day, and VicodinES 2 times a day. Yes these are very strong drugs (narcotics) but I have a life back. I can now play with my grandchildren without cringing. I have many health problems. Strokes, Malignant Hypertension (on 6 HBP meidcations), Insulin Dependen Diabetes, Amnestic Disorder (Can't remember new things well). I think that's all. And I am only 54 years old. I personally think that's pretty young. I"m also on antidepresants. (Gee, Who woulda guessed) It's also hard because people can't see in your brain and see all the damage. On the outside we all look normal. So education the doctor's and family and friends is very important. I have carried this alone for many years now. But maybe I have found a voice again and will scream from the mountaintops this is a major problem. Maybe they (everyone and anyone will listen). Anyway just wanted to reach out. Thank you all, Me
I didn't know that the mailing list name would not show up - just do a web search on CPS Alliance. You will find the webpage of the group with some info about the disease, along with info on how to join the email list.
I had a thalamic stroke on 10/16/07 and developed Central Pain Syndrome (Thalamic Pain Syndrome or Dejerine-Roussy Syndrome) within the week. It is a terrible disease that seems to have no cure or even much recognition at this time.
I have found that only Neurontin (gabapentin) has given me any relief from the cold/burning pain and tingling - the numbness and lack of sensation does not really relent. But the drugs make it bearable; just be sure to take a sufficient dosage and take it regularly. (I take 2400 mg spread out over the day).
Regular pain drugs will not work much. Alcohol may numb the pain temporarily, but you will feel worse the next day. Combining gabapentin with a tricyclic antidepressant helps, and the antidepressant helps with the inevitable depression as well. Many sufferers in other states and countries also swear by medical marijuana, which is not legal in my state, but which seems to relieve the pain but not get the partakers stoned. Some patients use fetanyl patches or morphine for relief.
Avoid cold, stress and fatigue. Eating a lot of protein helps as well.
There has been some hopeful work with stem cell research on repairing injured spinal chord and brain tissue, so this may be our best bet for a cure.
To join a community of like sufferers, join CPS_ALLIANCE***@****. We are all suffering from CPS due to some injury to the central nervous system. We advise each other on doctors, drugs, and treatments, since many doctors have NO idea about this disease. As we support each other, we become more knowledgeable and can move towards defeating this terrible and devastating condition.
I had a hypothalamus lacunar stroke on 01/09/09 with resultant thalamus pain syndrome on my right side of body. I experience tingling/burning/stiffness/tightness feelings in my entire arm & leg, but especially fingers/hand & foot/toes on right side. After enduring this 4 weeks with no relief I saw my neurologist this week. He put me on Plavix 75 mg. the day of the stroke. This week after I described the way the tingling/burning was getting me down he prescribed 75 mg. Lyrica twice a day. I have been on it since Thursday, 02/05/09. It is already working! The tingling/burning sensations are just about unnoticeable now. The tightness/numbness feelings are still present, but he stated that the drug would not help those conditions. I can presently see being more able to live with the strokes results now.
Hello there! I am a 40 year old mom of two and I just suffered a thalamus stroke about 3 weeks ago. I just do not feel RIGHT at all. I cant do anything without being so tired that I have to rest. I am really confused all the time. Ok lets face it I feel down right stupid when I can't form sentences correct, I get side tracked really easy and I forget everything.
I have noticed in the last week that when I get to go to bed I have like a hot/cold sensation on my left side.
I am also having a sever on going case of hives since this happened, every time I get the littles bit stressed out.
Is it just me or are you or any of your family having these issues. I feel like my Dr's just don't get it.
I am 62, and I had a stroke in the right side of the thalamus about 3 yrs ago. since then i have had burning and pain in my legs and feet.sometime in my arms and it hurts so bad i can't lay in bed. It mostly in my right arm but will go across chest and into left arm too. I read that neurontin can help this in the notes above. I am taking only 30mg of this right now,am thinking I should ask my doctor to up the amount I take. this information is very helpful.
Central pain syndrome is a neurological condition caused by damage specifically to the central nervous system (CNS) -- brain, brainstem, or spinal cord. The pain is steady and is usually described as a burning, aching, or cutting sensation. Occasionally there may be brief, intolerable bursts of sharp pain.
Patients are somewhat numb in the areas affected by this burning pain. The burning and loss of touch appreciation are usually most severe on the distant parts of the body, such as the feet or hands. Pain may be moderate to severe in intensity and is often exacerbated by movement and temperature changes, usually cold temperatures.
Generally pain medications provide little or no relief for those affected by central pain syndrome. Patients should be sedated and the nervous system should be kept quiet and as free from stress as possible.
Tricyclic antidepressants such as nortriptyline or anticonvulsants such as neurontin (gabapentin) can be useful.
Hope this helps you.
I had a thalamic stroke on the left side of my brani on 08/07/07 which all of the doctors in the hospital called a "small" stroke from which I would recover in a few weeks. They could not have been more wrong. Though I did not have any vision, walking or talking difficulties at the time -- just a lot of pins/needles/tingling on my entire right side, I developed central pain syndrom or thalamic pain syndrome which has impacted my right index finger (and, of course, I'm right handed so working with computer and mouse is VERY difficult), my right hand, my right arm, right side of my face/scalp and my right knee and the bottom of my right foot very seriously. I take 2400 mg of neurontin each day, 90 mg of cymbalta, 10 mg folic acid, 20 mg lispinopril, 40 mg lipitor, 1500 calcium as well as calcium infused aspirin which has worked to a point, but my recent increase in neurontin and change from capsule form to pill form has caused dizziness and episodes of fainting. I am thinking of asking my neurologis to consider Lyrica versus neurontin or even Trileptal which are both used for other pain syndromes. I have found some relief -- esp with being able to fall asleep and stay asleep for more than 4 hours -- with weekly acupuncture treatments. I also have occupational PT on my arm/hand twice a week and most recently my Federal government health plan -- the one which the Presidential candidates RAVE about -- has started sending me "surveys" to complete to determine if my medical problems are in anyway related to a work-related incident, an accident or other reason, which I'm guessing is because they want to pass along some of my high medical expenses. At least I have health insurance, but their bet is that you pay them and they only have to pay minimal expenses for policy holders, nothing like what I'm going through. Light exercise -- walking, stretching over a hugh exercise ball, some squeezing of therapuddy. Hope this helps!!1
I am a 43 year old female. I was just told I had had a stroke in the thalamus. I was told I also had a small hole in my heart that needed repaired. Last night my left arm began hurting me to the point I could not get comfortable to go to sleep. Could this be due to coumadein or the stroke in the area that I had it? Could someone please help me with an answer.
Has your father gotten any relief??? My daughter recently had a stroke in the thalamus area, and she is now experiencing a lot of pain in her leg from the knee on down. She is on pain meds, but they aren't helping much. I need to find something to give her relief --- she's only 25 years old!!!!!
Thanks a lot.. I will advice my father.. Thanks again
sorry you got answer so late BUT today I got a bit free to surf on this site & I saw you are very concerned & your second post reflects you are sad no body answered.
Do not panic.panic will lead you no where.
No body has answers for you for so called thalamic pain & paraesthesia.there is no drug to help this pain
BUT CERTAINLY YOU can get rid off this pain totally in very short time if you will do as under.
1) Do not let any one touch the skin of painful area. This is a must.(Including your touch as well)
2) Let your father move his good hand on the skin area on the affected painful side having paraesthesia.
3) repeat for long hours as long as 5 hours a day & you will find your father telling you HE IS SURPRISED PAIN HAS VANISHED.
REPORT ME directly on ***@****
u may check www.brainstrokes.com
No reply on this still :-( :-( :-(
Please can any medical support be given on this