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What could be causing these post stroke symptoms?

20 answers | Last updated: Oct 23, 2015
tamalac asked...

My mother had a stroke in April 2009 in the thalamus area, affecting the right side of her body. She has since suffered from pain, often severe, on the right side of her body as well as her left arm. The arms seem to be affected the most and will feel hot to touch at times and her palms are sometimes red. She also has suffers from headaches with dizziness and nausea which the neurologist referred to as a migraine type syndrome? She also has difficulty swallowing. Although she can eat she's often too nauseated most of the time to do so. She also has aphasia which often becomes worse after headaches. Next week she will undergo a brain angioplasty and spinal tap. Doctors are not quite sure what is wrong with her because the stroke happened in what they call "Grand Central Station" of the brain and can cause many problems. My question is has anyone else had similar problems?? I just hate to see her suffer with no real answers yet. Any info would be helpful as we both just want her to get as well as possible.

Thanks, Tamala


Caring.com User - James Castle, M.D.
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James Castle, M.D. is a neurologist at NorthShore University HealthSystem (affiliated with The University of Chicago) and an expert on strokes.
39% helpful
James Castle, M.D. answered...

The thalamus is a very important part of the brain, and a stroke there can be quite debilitating.

First, with regard to the limb pain, this is very common after See also:
After a Stroke: When Words Fail Us

See all 581 questions about Stroke
a thalamic stroke. It is similar to the phantom limb pain people complain about after a limb amputation - the body simply doesn't know how to interpret a lesion in the sensory neurons coming from the limb through the thalamus, and mis-interprets this as pain. In my experience, it is best treated with the medicines amitriptyline, nortriptyline, gabapentin, Lyrica, or possibly Cymbalta.

The headaches may also be from the stroke, and a headache disorder which started because of the stroke, and the above mentioned medications can be very helpful. Topiramate is another effective headache medicine, but you might find that it makes her speech problems a bit worse. I strongly agree with your doctors, however, on the need for a angiogram and a spinal tap - to make sure that there is nothing else at work, such as an autoimmune attack against the brain or the vessels in the brain.

The difficulty with speech is not uncommonly seen after a left thalamic stroke. It should improve slowly over time. Usually, the most improvements are seen over the first 3-6 months, and come very slowly.


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17% helpful
JoanneSh answered...

So sorry to hear about your mom. My husband (47 years old) had a Left thalamic stroke (hemorrhagic) about 1 month ago. He didn't know he was having a stroke. They say the stroke was mild but with a lot of bleeding. He woke up to loud noises in his right ear and right ear pressure. This is what caused him to initially seek treatment. He was diagnosed with tinnitus (not stroke) and could not get any relief. He also started having random pain in his body that would come and go. He was sent for an MRI 2 weeks after.....diagnosed with the stroke. Still not much treatment....and no relief with the noises in his ear.....which has been constant. It is an awful symptom. He did get some improvement with pain from Nortryptilline. However, he does not mind the pain as much as the haunting sound. I am heartbroken and exhausted that there is no treatment for the ear sounds. It is an awful feeling not to know what to do. :(


50% helpful
LouiseinNJ answered...

Tamala, it sounds like your mom has a classis case of Central Pain Syndrome (CPS.)Take a look at http://www.painonline.org/ and see what you think.

This is a result of her brain injury. Drugs as as anti-convulsants may help her, especially at robust dosages. Talk to your neurologist and see if she or he is familiar with it. Be sure to print out the definition and bring it with you - sometimes we have to educate the professionals!

I wish your mom fast success in getting effective treatment. Untreated CPS is agony that most people cannot even begin to comprehend. Actually, they don't WANT to comprehend it; it's too awful to think of it.

Bless you for being your mom's angel.


60% helpful
blgreene answered...

Tamala: Blessings to you and your mother. I had a left thalamic stroke in July of this year; in fact it was on the 4th. Since therapy I've had severe pains in the left side of my face, arm, leg and hand. I am on gabepentin, which helps only temporarily for me. The headaches come and go, but the doctor told me that I would have various type pains. I also lost my taste and smell. Everything that goes into my mouth has a metellic taste and the more seasonings that is in or on the food taste worse. I sometimes rather deal with the pain than this taste or smell. However, I have to focus on the fact that it could have been worse and there are others worse than I. Waiting to get better can be agonizing, but knowing tht someone cares makes things more easier each day. Be encourage with each new moment.


luzdomingoisu answered...

My husband had a hemmorrhagic CVD last Dec 31 2010. It was devastating but God provided me all the strength including the guidance to his doctor. A lot of people came to pray for him. Inspite of the financial problems I am having now, I think he will get well. He was give high doses of cerebrolysin, neuroaid and a lot of vitamins. Now, he can walk and talk normally. His brain functions normally including sex. My problem is he is losing appetite and his eyes are blurred sometimes specially when he is walking. His doctor provided him neurotain, melatonin and valsartan 160 mg. I hope your mom will get well. She will need a lot of hugs and encouragement including you. I am offering God prayers for your mom to experience Gods love by healing her. God bless.


50% helpful
L.L. answered...

My husband had two concurrent strokes in 2008; one in the left thalamus and one in the cerebellum. While he doesn't have any pain or headaches like your Mom does, he does have vascular dementia as a result of the permanent brain damage. It is kind of like mild-moderate Alzheimer's, although in some aspects he almost fully recovered from the strokes. Physically he is fine, but he has many cognitive problems and language problems with word finding, etc.

He was driving when the strokes hit. He was pulled over by the police and suspected of DUI, although the breath-alyzer (3x) showed 0.00%. He doesn't drink. Anyway, he was in jail for seven hours before I could bail him out and get him to a hospital, where the two strokes were confirmed. At any rate, he couldn't get proper stroke care because it had been so long since the strokes occurred (although nobody knew exactly when each stroke hit; both happened sometime during that day).

He went through six months of intensive speech and occupational therapy but he is still disabled.

I certainly can empathize with anyone who is caring for a post stroke survivor.



33% helpful
Southern Belle RN answered...

I am a right thalamic stroke. I am on heavy pain meds but for the first time since my stroke my left side is not on fire. The worst is not being able to breathe. I have had pain to the point of blacking out. And I thought a 50 hour labor was bad! Other symptoms altered sensation on left side. Not knowing where I am in space, feel like walking on clouds sometimes. Altered temperature tolerance big time. Slept 22 hours a day the first years. Lost my ability to "check" what I was going to say before I just blurted things out. Loss of appitite, everything taste the same, like nothing, so I have trouble with weight sometimes. I was a ER, CCU/ICU, oncology nurse for 17 years before my stroke. Doctors will hold back giving elderly pain meds because their bodies hold onto the drugs because of decreased kidney function (normal part of aging). Personally I think anyone in pain should be treated appropriately, not for the doctors comfort. Hope this helps. Best of luck to all.


mom4jandj answered...

Tamalia, I recently suffered a stroke in the right thalamus. Without going into much detail, I will say that I have suffered terrible pain on the right side of my body. Nothing helped until I finally went to acupuncture. I had never tried acupuncture before, but was desperate. I have had only three treatments so far, but have had three days of very little pain, and slept three nights. I had gone almost 7 weeks without sleep because of the pain. Although I still have some pain it is bearable and I really feel that the acupuncture is helping me. You may want to try it with your mom. I truly feel for you both. The pain is torture. Believe me I know. I will keep your mom in my prayers. Darla


MnMD answered...

I am an eye surgeon two weeks post Rt.Thalamic Stroke. I started using PEA or Normast on the day after the onset while fishing in Canada(no tPA). I also am taking a course of hyperbaric oxygen(HBOT). I have had NO pain so far. I expect to return to the office in two weeks and to surgery next month.My wife has used Normast for a year for her peripheral neuropathic pain with good success. It can be obtained from www.ergomax.nl. It is a body own food, not a drug, and not regulated by the FDA or USDA. Do not passively accept medical advise because if NIH(not invented here).The research is in Italy, there was a Nobel prize was awarded for the discovery, it was patented in 1999, and Dr. Hesselink in the Netherlands has treated over 3500 pts. for pain with good success.


Susanhen answered...

My left Thalamic stroke went undiagnosed for four years and was finally diagnosed through the Thalamic Pain Symdrome that followed. I tried every drug the Doctor listed above, and finally received some relief from what they call a "Dirty Drug"- Desipramine. Took my pain from a daily average of a nine to a two within two weeks of starting the medicine.

Thalamic Pain is so hard to deal with and not very well known. My heart goes out to you all. Glad to know I'm not alone.


jan of Fl answered...

i h all the drugs dont touch the painad a thalamus stroke on left side in 2010. the sensory is so hard to explain to people, because i look normal. the pricklinest, burning ,cold knofe stabbing sensations are hard to deal with. sometimes at night i have to jump in the shower to calm my nerves.All the drugs dont help. lyrica,zanax,hydrocodonen and tramidol. any suggestions are welcome. tnank you.


Heidzsmile answered...

My mom had a right thalamic bleed last january of 2012. Until now, almost a year, she's still in pain everyday. Her doctor gave her gabapentin for that pain which he called a neurologic pain but that pain is not totally relieved. She was very sensitive with a small blow of wind, smoke and everything. Her doctor said that it took a year or two years for her to recover... Such a long time to wait.. Patience and love is very important for them to feel comfort in their everyday life...


Anthony M answered...

Hi Everyone, I suffered a left thalamic infract about 2 years ago and I have to praise the doctors and nurses that helped me through it. I woke on the morning for work but could not function properly and kinda bumbled down the stairs very confused but it didn't occur to me what had happened and I tried to walk to the bathroom and fell twice but still couldn't register that there was something wrong..... I went back to bed and my better half said I was muttering something incoherent. She then woke me a short time later and asked me to sit up and try and put my clothes on (which I really struggled with) and then she said that her mum thought I may be having a stroke as my symptoms resembled what she had seen in a TV advert. So they got me to hospital and they sent me for a scan quite quickly and low and behold I did have a stroke but as the advert says the earlier you catch it the better your chance is and I can testify to that. I was very young for having a stroke (34) and can only thank my family (for their quick thinking) and the medical staff (for all they have done). I am living proof that the TV advert works and all the posters etc is money well spent as long as people heed what the message is.


Dera103 answered...

Hi all, I too suffered a left Thalamic brain bleed on May 1st, 2015, so I am now 2-1/2 months into my recovery. Most of my right face, arm and hand have gotten much better. But I am still experiencing tingling and burning in my right lower leg and foot. Some days it's tolerable, but some days it hurts more. It makes me worry that my upper body has bounced back, but not the leg and I'm concerned that it will turn into Thalamic Pain Syndrome. If anyone could share their recovery outcome with me, I would greatly appreciate it. I will also continue to share my progress as well.


Frapata answered...

my husband had a thalamic bleed behind his right eye on 15th June. It has left his pupil enlarged in that eye. If he covers his left eye he can see ok out of the right eye, but trying to use both eyes gets double vision. This occurred during chemotherapy treatment and having blood thinning injections. No other side effects and no pain. But has had no referrals to opticians - any one had any similar experience, He has been told when the bleed clears it may right itself?


cogo1959 answered...

I have had two strokes one on each side of the thalamus. I have been having a lot of the problems I have been reading on here, and I have not once been told that this could happen. I was 40 when I had them I am 56 now. I will be talking to my doctors about it. As I have aged I noticed things are showing up more. I feel better reading these ansers from you all. Thank You.


pain free now answered...

suffered a stroke in July 2004 at Boy Scout Camp in Las Vegas, with 23 years in emergency medicine. Within 1 minute, I said I needed to go to the hospital “RIGHT NOW”. Another Scout leader was a local paramedic. He took me to the best hospital (Sprimg Valley). Within minutes, a CAT scan revealed an ischemic stroke (top of the brain stem, base of the cerebellum, about 1 to 1½ mm.

I was discharged in 7 days, to Kaiser (my insurer) in CA. I was “warehoused”in a “skilled nursing center” with hundreds others. Only one was walking, with 90 minutes daily “physical therapy” and a bunch of meds. I was determined to get out! I made my own therapy schedule! After 7 days, I was walking 7 miles and cycling 4 miles a day. In the therapy room, a Russian lady screamed “PAIN”. I never associated pain with stroke.

Little did I know the demons awaiting me! That Nov, pain started! My neurologist prescribed gabapentin (Neurontin), My primary care dr, removed gabapentin, replacing with nortriptyline. After HORRIBLE pain, the neurologist restored gabapentin.. The PC dr prescribe codeine for pain... poor results. After 10 years of codeine, another neurologist (from AZ) correctly determined the majoritiy of the pain was codeine withdrawal.

Now gabapentin and venlafaxine (effexor) give excellent pain and burning relief. ALL YOU OUT THERE... GET TO A NEUROLOGIST (or two) for REAL positive thalamic pain care. In the meantime... kindly educate your primary care doctor about thalamic pain syndrome. Take a look at the new FDA info on second stroke risk with TCA’s and kidney problems with ACE inhibitors. Don’t stop ANY medication without consulting your Dr! I have wordrful doctors in AZ!



I had a thalamic stroke in May of 2015, after which, I pretty much thought I was fine except for some numbness throughout my left side. However, due to finances, I was unable to receive PT, but did do as many exercises as I had been shown in the hospital and walked a couple times per day. I went back to work as a medical transcriptionist in June, (bad idea). Within a month, I was seizing or something that looked like a seizure, constantly. A trip to the neurologist revealed clonic seizures or myoclonus from the stroke. I'm just now starting to get relief from these on a combination of gabapentin and Tegretal, as well as Klonopin. Best wishes to all who are suffering from the pain. As y'all describe it, I realize that I've just begun to have some of this same pain in my knee, right side, at night. It is a terrible burn. Never had this before. One doc said to get Neurocet that you can order online. I haven't tried it yet, but would like to and see if I can actually get off the RXs.