bitter taste, ear banging symptoms anyone?

    • Anonymous
      March 26, 2009 at 6:11 pm

      Hi, I’m a newbie, writing on behalf of a dear friend whose now home from the hospital after being essentially diagnosed with GBS. He spent 3 weeks in the hospital, and is now home for 2. His main symptoms were top down: partial facial paralysis, double vision, nausea, headaches, back aches, some muscle weakness and tingling sensations. He’s getting some physio, has an eye patch to reduce the double vision ‘movies’ he sees. Some days are better than others, of course.

      What he’s wondering is if others have not so much ear ringing but a banging and/or tingling sensations in their ears, and whether their taste is skewed towards bitter or citrousy sensations.

      Thanks for any responses in advance.

    • Anonymous
      March 26, 2009 at 8:49 pm

      welcome to the forum. I have always had trouble with my ears so I don’t know if some of the sensations are from gbs or not. however, while in the hospital I didn’t have any taste for awhile, when it did start to return I remember the only thing I could taste for a long time was orange crush soda pop, then some chocolate and some extremely salty things like chex mix..since then my taste has pretty much returned to normal. tell him/her to be patient. this takes time

      good luck and thanks for being such a good friend

    • Anonymous
      March 27, 2009 at 10:39 am

      Thanks Sherry for the helpful response. I’ll pass on your encouragement to my friend. It is good to know of others’ experiences who’ve gone on before us when affliction hits.

    • Anonymous
      March 27, 2009 at 11:35 am

      I have and have read anecdotally of many who have tinnitus [ringing in the ears] well prior and worse after GBS/CIDP.
      As for taste changes? Web up the medications being taken for both the pain and anything else.. look up ‘prescribing information’ and read the ‘reported side effects’ and further down, the ‘less common side effects’. Many, many meds affect how we taste things.
      As for cravings? I’d lost all desire for any foods once I’d come down with this all…. I forced myself to eat tame or mildly tasty things just to get nutrition into me! Especially when your taste overall is warped [as are your nerves] it’s sort of a force-feeding process. I found Ice Cream helped! Didn’t care what flavor tho.

    • Anonymous
      March 27, 2009 at 12:11 pm

      Yes – this sounds very familiar. My hearing had a number of twitches that in time eased. I do have ringing in the ears, but that’s normal for me! Also my taste went totally wierd on me for a while but in time that straightened out. Hope this helps.

    • Anonymous
      March 27, 2009 at 6:30 pm

      I too am a newbie-i am recovering well since gbs onset in dec of 08-the first 6-8 weeks my taste sense was way out of kilter but has gradually returned to norm.I wonder if anyone has cold flashes-mine start in my nose and front teeth and center on shins ,fingers and thighs-strange but i perfer these to hot flashes.Be brave and tenacious.PAX

    • Anonymous
      March 27, 2009 at 6:59 pm

      Yes sounds all too familiar to me I had all the symptoms of your friend the double vision, the nausea, the banging in the ears, the taste. Mine have settled to near normal now so best wishes to your friend for a full recovery.

      Debbie

    • Anonymous
      March 28, 2009 at 6:58 pm

      Thanks for all the replies. It is consoling to hear of others’ experiences. And I wish you all well in your recoveries. One more issue my friend brought up today. He was wondering if there’s anything that people are doing to help alleviate their double vision. He is using an eye patch for but he can only use it for short periods of time. Any tips out there?

    • Anonymous
      March 29, 2009 at 3:07 am

      I had the double vision for about 5 months and i know how annoying the eye patch can be. I got a pair of clear safety glasses and stuck a patch on one of the lenses that way I could keep my eye open it helped me for a bit anyway. Just a suggestion that may help your friend.

      Regards,
      Debbie

    • Anonymous
      March 29, 2009 at 10:16 am

      I was seen at my request in the hospital by a Neuro Opthamologist and am still under his care. I had the double vision and my eyes were frozen wide open and under much pressure. They were sore to the touch when washing my face. I lost my peripheral vision which gradually got better as my body healed. Finally after a years my vision is actually better than it was before the GBS. A year ago i was told to come back in a year which is next month! I was glad that I did keep up with my eye appointments all thru this ordeal. During the second month I was given eye exercises to do to get them to move with coordination together. I was told to move them with the baseboard and molding around the doors…..follow any lines that were vertical and horizontal. Bulletin board, ceiling tiles, window pane and follow the outline of the buildings that are outside the window. I feel that really started to help them come back and get stronger. After doing that then they made it a little bit more interesting and had me write the alphabet with my eyse in a tile block in the ceiling. N M Z T V A H got to be easy but the S O Q were harder to trace. If this did not help it sure did keep me from getting bored. I would write whole sentences with my eyes! HELP GET ME OUT OF THIS BED! Yep I even added the punctuation! LOL Be Patient and work hard to get to your goals!

    • Anonymous
      March 30, 2009 at 4:05 pm

      Thanks for the ideas. I really like your idea, Kit, of learning to trace with your eyes the shapes of the room and the letters of words. That makes a lot of sense of retraining your eyes to see in a coordinated fashion. I’ll pass them on!

    • Anonymous
      March 31, 2009 at 9:14 pm

      Another question from my friend Paul recently diagnosed with GBS. He has started physiotherapy, in which he is slowly making progress. He can slowly walk across the room (although he gets dizzy). His physio says he is a little steadier on his feet. However he has a lot of stomach queasiness. (He’s not on any GBS-related drugs due to other factors – weight, blood pressure, etc). This is likely a tricky question given the whole range of symptoms GBS sufferers can have…but he wants to know how normal stomach queasiness (or nausea sometimes) is for the recovery phase. Any responses?

    • Anonymous
      April 1, 2009 at 4:02 am

      I had really bad nausea in the early stages. Not sure how common it is. I am sorry to say and I wouldn’t be telling your friend this but I still suffer from the nausea now 5 years on. Your friend needs positive reinforcement that he will improve and that what he is experiencing has been experienced by some of us fellow sufferers too. I sympathise with him at present as I can feel his pain like it was yesterday. Send Paul my best wishes.

      Regards,
      Debbie