Is there any treatment to help my mom regulate her temperature, post-stroke?

2 answers | Last updated: Sep 14, 2017
Kbeech asked...

My mom had a stroke 18 months ago as a complication of treatment for severe Guillain Barre from a FLU SHOT. She is still basically paralyzed and has been left with many residual symptoms. One of the most troublesome is the lack of her body's ability to regulate her temperature. Even if it is very hot, she is very cold and then she gets overheated and sweaty, which makes her cold again. Her thyroid is okay. I am hoping this is a sign of her nervous system being re-activated as the problem has gotten much worse during the last few months but I don't know what to do. I was wondering if any of the medical professionals or family caregivers could offer any insight and ideas for treatment if treatment is available. Thank you.

Expert Answers

James Castle, M.D. is a neurologist at NorthShore University HealthSystem (affiliated with The University of Chicago) and an expert on strokes.

I am assuming that when you use the term "Stroke" in your question, you are referring to some residual symptoms from the Guillain Barre Syndrome. Typically, a stroke would be unlikely to cause the whole body to be paralyzed, as would Guillain Barre Syndrome, and would be unlikely to be a complication of Guillain Barre Syndrome. Stroke almost always causes only one side of the body to become weak.

Therefore, assuming Guillain Barre is the underlying problem, the autonomic peripheral nerves can often be badly affected by this disease. In a normal person, the autonomic nervous system regulates temperature by dilating or constricting blood vessels in the arms and legs. If her autonomic nervous system has been seriously affected by the Guillain Barre, then she may need to regulate her own temperature by appropriately wearing lighter or heavier clothing as the situation presents itself. This would be expected to very slowly improve over time.

If, in fact, there was a stroke during her Guillain Barre Syndrome, then a similar situation can occur. The brain controls the autonomic nervous system, and certain strokes can affect that system. Unfortunately, symptoms due to a stroke do not recover as predictably as they do with Guillain Barre, and by 18 months out, she may not get much better. Unfortunately, there is no "quick fix" to this problem of which I am aware short of wearing the appropriate layers of clothing and/or blankets.

Community Answers

Kbeech answered...

Thank you so much for your response. None of the neurologists or physiatrists she has seen, and there have been quite a few, are sure of exactly what has taken place. They just know it was some type of severe dysautonomia resulting in Acute Sensori-Motor Axonal Peripheral Neuropathy and then on day five of IVIG treatment, a bilateral parietal-occipital lobe stroke. No one is quite sure what her residual symptoms are exactly from but I know that at this point, it doesn't really matter. She has been seen by some of the best specialists in the country at Yale, Mass General, Gaylord and Shaughnessy Kaplan Acute Rehab, so she is in good hands. They are still monitoring and supervising her care. I have been told that her case will be written up in medical journals some day because it is so unusual.

They all have said that her recovery is not following the normal pattern for either Miller Fisher, GBS or stroke so they are just treating symptoms. I am not sure how much more progress she will be able to make but I am fortunate to have supportive professionals who have not given up. My mom is really amazing and still has quite a fight in her. She is determined to improve so only time will tell.

She isn't on many meds anymore but has a Baclofen pump, which was adjusted upward during the last two months. I was wondering if Baclofen could effect the hypothalamus/autonomic nervous system? She is very, very sensitive to meds and has had to be on a very low Baclofen dose in the past due to side effects.

Thank you so much for the information and help.