I am trying to find anyone that has ever suffered from numbness on their head. I have recently been suffering many symptoms of my GB. The newest of which has been numbness on the left side of my head. It comes and goes. I must say that of all the different symptoms I have suffered over the past several years this is one of the scariest. Looking for any information anyone may have about this symptom. Any feedback would be greatly appreciated. I am a new member to this site. I would really appreciate communications of any kind, feedback and/or if anyone would have any questions that they would like to ask me. I have been dealing with this disease for over 3 years. I know that this disease is life changing and more than overwhelming. If there's anybody that is new to this disease that has a million questions or even just one, I would love to try to be of some help if I can. It was very hard for me to find any information about this disease in the beginning and would like to help anyone I can.
thanks so much for sharing. others will see this and comment back :)
Hi Jennifer,
I am also new to this board and I was only dx with GBS just under 2 months ago. Do you find that your symptoms come and go or are they constant? I have lots of things that come and go and it is very frustrating as I don't know when I'm going to have symptoms or what they are going to be or how long they are going to last.
Unfortunately, I don't have any insight into the numbness in your head. I'm sure the doctors have ruled out more serious stuff, so at least that is good.
Thanks!
Jennifer...
I don't remember any numbness in my head... but I lost my vision for a few months too. I was in the hospital for a long time and had a lot of what they call, "fantom pain". Sincerely, I am quite grateful to the endless supply of morphine they dosed me with blurring my reality... I do have a question though. GBS is both scary and stressful. Could you be be clenching your teeth and stomping on one of the trigeminal harness' nerves? Does your jaw ever bother you when you wake up or at the end of the day?
Just a thought...
Syn
I was diagnosed with GBS in March of 2012. At the lowest point I was completely paralyzed. Now I'm mostly over it. Two things that are still with me, and that appear to be permanent, are the nerve damage to my feet (pain/tingly feeling), and numbness in the left side of my face. The facial issue isn't bad enough to be noticeable to others, but it is somewhat of an annoyance to always have this numb feeling. It seems like it will be there for the foreseeable future, as it hasn't changed at all since last year.
Hi, I have numbness from the left side of my face to my toes. Did you experience this and if you did, how long did it last.
Hi Jennifer,
Yes I had numbness on my scalp, back, down both legs from the hip to the ankle, down the backs of both legs. I still have numb spots just not so extensive, and I was diagnosed in 2000. I also had/have itching along the backs of my hands from the wrist to the beginning joints of my fingers (knuckle), and I have repetitive muscle twitches though the twitches have abated considerably in the intervening years, but I still have them today, especially my quads, bi and triceps.
I've found that physical exercise helps, but in the beginning (before the remyelination of nerves) I exhausted myself long before I could gain any benefits from strenuous exercise. I think time is the only thing that helped.
That foot drop symptom many patients mention (I have it too and still wear ankle braces) is usually from the long thin muscle that runs down the outside of your shins. My Nuro said it was a design flaw and blamed GOD for not making it a bigger muscle.
I tried many sessions of acupuncture, and it did aid in some moderate pain relief, but it did NOT speed up the remyelination of my nerves. I don't think I would do it again; the needle pain was not worth the gain.
Hope that has helped.
Daniel
I was dx in 2011. I was paralyzed from my thighs down for over a year and had limited mobility and use of my arms and hands. Now I can stand for a few moments and walk short distances with a walker. I still have extensive buzzing/tingling/numbness in my hands/arms/ legs and feet. It is 24/7. I am in intense pain especially when it rains or snows. I think it has to do with the barometric pressure. I also have a low tolerance for cold. I have come a long way since my onset 2 1/2 yrs ago, but wonder, does the tingling/pain ever get better? Any suggestions as to medications/diet/exercise that might help?
Hi. I was diagnosed in Feb. 2011. I was in hospital for 2 months and Then was in a Rehab hospital for another month. I was paralyzed from my arms down ,but also had my left eye and the left side of my mouth affected( Miller Fisher syndrome) . I had Plasma exchange treatments for a year ,and then IVIg for another year. I have had numbness on the left side of my head ,left arm and left leg . Some times it is worse than others. Since October I have also been having a lot of twitching of my left eye which is really annoying but seems to be improving. I think that some of this will be permanent but my neurologist says that I am still improving and healing. Everyone is different and some people heal completely while others have lasting effects. I consider myself lucky to be as good as I am .I don’t have extreme pain like some people…only occasional “zaps” in my feet. So hang in there a and keep moving forward !
Well Jennifer I do not know what to tell you about the numbness in the head. I had them since 1973, that is when I came in contact with Guillia Barrea, that to me is a minor issue, I learn to live with all symptoms relate with GBS. I learn a new ways compensated for muscle the did worked for 40 years and now retired and enjoying live. I did not recover 100% I use braces in my legs, acceptances is the best way for me.
I do have numbness on the left side of my head. At times it gets worse and will effect my speech. That is the least of my problems, it’s been 21 months since my gbs appeared and I still have numbness in my arms,legs,feet and hands. Walking a few steps is difficult and trying to hold something is almost impossible. Has anyone else had any side effects like this or if so lasted this long?
I’m almost three years out from my first hospitalization. Just within the last month, I have also experienced this numbness and/or helmet pain on my head. It comes on about 4 PM and lasts until I go to sleep at night. CAT and MRI dhow nothing abnormal. Just know you are not alone. I cannot control the pain.
Hi Lance. I was diagnosed October 2012. Was in ICU (also completely paralysed) for 5 weeks. I have made a miraculous recovery and am even competing in 15km races again. My feet also tingle sometimes and the left side of my face is a little numb. My eye jumps a little. As you say no one else seems to notice it though, so all is good. Whilst in hospital I received acupuncture and laser treatment along with a few chinese herbs from the doctor I work for. I do believe that is why I recovered so quickly.
LanceB said:
I was diagnosed with GBS in March of 2012. At the lowest point I was completely paralyzed. Now I'm mostly over it. Two things that are still with me, and that appear to be permanent, are the nerve damage to my feet (pain/tingly feeling), and numbness in the left side of my face. The facial issue isn't bad enough to be noticeable to others, but it is somewhat of an annoyance to always have this numb feeling. It seems like it will be there for the foreseeable future, as it hasn't changed at all since last year.
Did you also have numbness in your extremities and if so how long did it last, thanks.
Hey Gbsguy,
I was diagnosed in 2000, and I still have numbness in my left foot; and other extremities have diminished feelings.
Good luck;
Dan
Hi Jennifer,
Have you been diagnosed with GBS? If you have been dealing with ongoing and new or gradual symptoms as opposed to residual symptoms after recovery, you may have CIDP Chronic Inflammatory, Demyelinating, Polyneuropathy that was misdiagnosed as GBS. If this is CIDP and not GBS you need get treatment.
I was diagnosed with GBS a little over a year ago. I had numbness and tingling on my head as well. I know from my reading that it means that you have cranial nerve involvement.
I also had swallowing problems, total facial paralysis, so I had to get my eyes tape closed at night. My face, mouth tongue and throat were numb, I lost my voice, had slurred speech and breathing problem. I had fluctuating blood pressure I never became completely paralyzed but for a while I couldn't walk, could use my hands. I had incredible burning pain in my arms , legs and back. All the places that burned eventually became numb. I still haven't regain total feeling in my hands, feet, abdomen and back. After I started to get better half my hair fell out. It was coming out in handfuls.
The worse of these problems developed rapidly over the course of 3 weeks and after another 7 to 10 days started to improve. Does this sound like how your GBS happened?
They did dx me with gbs almost 4 years ago. I am always suffering from new symptoms that they cannot explain. I originally was paralyzed and unable to walk, now I am walking. The new symptoms include numbness on my head, constant migraine, weakness in my arms, weakness in my jaw when eating, weakness of my eyes, constant fatigue