New Guy

    • Anonymous
      November 7, 2006 at 3:53 am

      Hi Folks,

      I am new to computer posting and also new to this forum. I just discovered this website and I am extremely grateful that you all have experiences to share and you have opened your hearts. I would like to relate some of my history for your comments and ask a few questions.

      After I was laid off from my job, I went onto my wife’s insurance and was assigned a new PCP. This doctor prescribed a routine pneumonia shot (is there such a thing?) and 2 weeks later I contracted a severe case of bronchitis. I started to cough so bad that I had to go to the ER and they gave me codene cough syrup. 2 days later the soles of my feet went numb. 24 hours later I could not stand or breathe and I was rushed to the hospital (little did I know, I wouldn’t return home for 8 months). 3 hours after I was admitted a spinal tap was completed and the protein levels were elavated. At this point (day before Thanksgiving 2004) I was introduced to the challanging world of GBS.

      In ICU I was trached and had Plasma Pheresis and IGiv. I spent the next 3 months on the infamous ventilator and in a morphine fog. After 3 months in ICU (laying motionless must cause atrophied muscles & contracted joints) I moved to step-down for 3 months and rehab for 2 more months. I had the trach for 6 months and I was fed liquid nutrition through a GI tube for 6 months (man, I was dying for solid food).

      I came home in July of 2005, but could not get myself out of bed, walk, or feed/groom myself. I had home OT and PT for a while before going into an out-patient program. Currently I have motor and sensory damage in my hands, feet and facial muscles. My left thumb does not function at all, but the doctors are going to attempt a tendon splice from my wrist that will hopefully give me some movement. I have had surgery on both feet and one hand to correct contractions in the joints.

      I have some use of my hands, but it is almost impossibile to type, tie my shoes, or cut food with a knife. I have graduated from a walker and can walk about 300 feet without assistance, although I have balance issues and my son says I walk like a penguin. My face and tongue are pretty numb and I do have some slurred speech. Fatigue is a big issue for me and I cannot sit up for more than 5 hours without lying down to rest. I currently only take Neurontin for pain. I have just started to excercise at a gym (lifting light weights) to rebuild the atrophied muscles, but I get tired very quickly.

      I do have some issues that remain unclear and I’m hoping you can help.

      – My feet are almost numb, but the soles are super-sensative. Even the bedsheet can irritate and be painful. Also, my feet always feel very hot or very cold, but they are normal temp to the touch.

      – I have severe headaches that start at the back of my neck in the muscles, and go up over the top of my head. Tylenol doesn’t seem to help. I also have a noticable ringing in my ears that is post GBS.

      – I have painful cramps in my neck and jaw muscles. These can appear at any time and will last for several minutes.

      – I’m hoping to resume driving someday. Do I need to notify the DMV or is my existing license valid?

      – I have this feeling like a belt around my chest at the diaphram area. This does not impede my breathing, but it can be uncomfortable.

      – This one’s a little weird. When I was in ICU and all morphed up, I had these incredible dreams that were not only very lucid (like hi-def) and realistic, but were extremely frightening. I had to be convinced by my family that these graphic scenes were not real and never occured.

      I,m sorry that this turned into a novel, but I’ll stay tuned for your helpful responses.

    • Anonymous
      November 7, 2006 at 7:14 am

      Hello Walt W.,

      Although I am 20 years post GBS I can still relate to just about everything you have said. The one thing that alarms me is your allowing the doctors to perform surgery on you when you are only 2 years post. I never had problems with contractions in my joints since I had proper therapy while paralyzed. However, I had very little use of my hands even though they were very flexible and was desperate to get some kind of use of them. The doctors convinced me that after two years I would not get any more use back. So, I allowed them to perform the same surgery that you described for your thumb along with another surgery that locked my fingers down so I can not completely extend them. As far as I am concerned, they botched both surgeries and I now have a claw hand as a result. What really upsets me is that I did get a great deal of movement back in my hands after the two year mark. Although I still have limited use they do work well enough to perform the tasks you listed on your post. Not like I use to before GBS, but I can do them. My right hand has very limited use due to the surgeries and I would have been much better off had I waited and allowed my body to due the work of healing. The doctors wanted to do both of my hands at once and I declined that option. Thank goodness! I wish you good luck on what ever route you take.

      GB

    • November 7, 2006 at 8:11 am

      “- I have severe headaches that start at the back of my neck in the muscles, and go up over the top of my head. Tylenol doesn’t seem to help. I also have a noticable ringing in my ears that is post GBS.”

      Hi There

      welcome to our family. I am so glad you found us…for support, answers, information. I am almost 4 months post GBS and of course still experiencing problems. I had a mild-moderate case….never paralyzed (unless you consider being convinced that if I tried to move my feet and legs that they wouldnt respond. Somehow they did, but I would have bet money on the opposite), no vent, and only hospitalized for 2 days and sent home with no answers (except I was nuts). Some days are better than others now. I am recovering, I can feel it, but a bad day can really wreack havoc on my positive attitude.
      When I read about your headaches it made me almost jump for joy….not that headaches are a reason to get excited. But I too suffer from the exact kinds of headaches!! I can feel the path of the headache from the base of my skull up and over my head to my forehead on both sides. Nothing touches them, not even an ice pack and not moving, no tylenol, no exedrine, no motrin. I took 4 excedrine (the caffeine in them drives my nerves crazy!) with my last one and still didnt get relief.. I can feel the darn things coming on and I am powerless, knowing I will be out of commission for the rest of the day at least. I have found nothing on the web about these headaches, but now feel I can talk to my neuro without being afraid of him looking at me crossed eyed. (I just started seeing him and he is aware of what i went thru in the beginning, but I am still a bit shy about what I say).

      I also have occassional ringing that is very loud and more often than I ever had before. Fortunately it doesnt last very long for me.

      I must ask, by any chance, does your neck get tight? Feel as if you are wearing a turtleneck that is too tight? It doesnt inhibit breathing or make ya feel like you will pass out, but it is annoying as all heck and swallowing feels wierd…sometimes it feels like something is in my throat and my throat is numb and tingling. This has gotten lower on my neck thank goodness, but at first it started under my jaw and included my entire throat area. Now it is above my collarbone. This comes and goes like most everything else.

      The others here are very helpful and informative. I am sure you will be getting plenty of responses and support from everyone.

      HUGS! And prayers to you!
      Lori

    • Anonymous
      November 7, 2006 at 8:19 am

      hi walt & welcome,

      nothing you say is out of the ordinary. gbs stands for Get Better Slowly. rest, give it time & you will improve. neurontin for pain. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 7, 2006 at 10:36 am

      Welcome to the forum, it was a lifesaver for me at my worst. I can identify so much with what you have written, even though I am 4 1/2 years post GBS/CIDP. I also have the ringing in the ears, but it does seem to come & go now. I know what you mean about the tightness under your abdomen, it feels like a piece of rope around that area, that someone is tightening. Here we call it the band, & many of us have had it. I believe it is caused by a band of nerves in that area; but after two years I rarely got it anymore.

      About driving, I would not report anything to the DMV. I did, & ended up having to retake both the written test & the driving test. When you feel ready, have someone take you out to some back roads & see how it goes. When you feel ready to drive, just start driving. I got my license back in Feb of 2005 & drive with AFOs & numb feet, but I do just fine. Also, my hands were very bad for about 2 1/2 years (could not wipe myself, tie shoes, do buttons, zippers, etc.) but now I have about 80% useage back. They healed on their own, so I would not recommend surgery on them.

      Please post any time you have a question, as there are so many on this forum that can help you. The support here is wonderful.
      Blessings, Pam

    • Anonymous
      November 7, 2006 at 10:51 am

      Dear Walt:

      Welcome to our little family. I am glad you found us and glad you decided to post. I have to agree with all the advice the other membes of our forum provided you. They have more experience with GBS than most doctors.

      As for your driving liscence, when you deal with the government, it is always important to remember this quote:

      “Always seek forgiveness, never seek permission.”

      If you have a valid drivers liscence, then there is no reason to raise any questions which would jeopardize your driving status. As far as the government knows, there is no reason for you to have driving restrictions, and there isn’t any reason for you to bring it up.

      Good luck,

      Lee

    • Anonymous
      November 7, 2006 at 10:52 am

      – My feet are almost numb, but the soles are super-sensative. Even the bedsheet can irritate and be painful. Also, my feet always feel very hot or very cold, but they are normal temp to the touch.

      [COLOR=blue]I also experienced this as have many others. I recommend asking your Neuro if you can raise your dosage of Neurontin to help alleviate this, ask for a sleep aid such as Trazadone in the meantime to help you sleep. Sleep is critical for you now as it will be from now on.
      [/COLOR]
      – I have severe headaches that start at the back of my neck in the muscles, and go up over the top of my head. Tylenol doesn’t seem to help. I also have a noticable ringing in my ears that is post GBS.

      [COLOR=blue]I also had this issue and took/take Immitrex for this. Ask your GP or Neuro about possibility of taking it.[/COLOR]

      – I have painful cramps in my neck and jaw muscles. These can appear at any time and will last for several minutes.

      [COLOR=blue]Tonic water that has quinine or quinine pills from your Dr. or a healthfood store will help with cramping usually. I had the cramping in my legs and it worked well.[/COLOR]

      – I’m hoping to resume driving someday. Do I need to notify the DMV or is my existing license valid?

      [COLOR=blue]Don’t drive until your safe obviously, if you get in an accident driving when you shouldn’t be it would be considered negligent. I would wait until you feel you are ready then notify them, you may have current restrictions that will be gone by the time you are ready to drive.
      [/COLOR]
      – I have this feeling like a belt around my chest at the diaphram area. This does not impede my breathing, but it can be uncomfortable.

      [COLOR=blue]I also had this, it went away with time. It was also very scary for me, my Dr. gave me an emergency inhaler, I think this was more to psychologically elleviate some of my fears. It did work though, a few puffs of albuterol and it made me breathe easier and helped ease my mind.[/COLOR]

      – This one’s a little weird. When I was in ICU and all morphed up, I had these incredible dreams that were not only very lucid (like hi-def) and realistic, but were extremely frightening. I had to be convinced by my family that these graphic scenes were not real and never occured.

      [COLOR=blue]This is pretty common to, people in ICU can suffer from a psychosis, add some morphine in the mix and you end up with some wicked dreams and bad memories. If these still bother you I would speak to a psychologist and work through these issues. [/COLOR]

      [COLOR=blue]Welcome to the family and I hope you keep posting, take care of yourself.[/COLOR]

      [COLOR=blue]Jerimy

      [/COLOR]

    • Anonymous
      November 7, 2006 at 5:47 pm

      Welcome to “The Family”. We’re a varied group with lots of different experiences but with residuals always common to more than one. As you can probably tell, we love questions! 😀

    • Anonymous
      November 7, 2006 at 8:25 pm

      Hi Walt:

      I can offer you a bit of info relative to driving, and the California DMV. I have CIDP, and suffered a severe exacerbation almost exactly one year ago today. This exacerbation rendered me completely unable to drive for six months. Finally, I recovered enough, but would require hand controls to get back behind the wheel.

      In order to get hand controls installed on your car, you need to be evaluated by a certified rehab facility. They specify the equipment, and recommendations for drivers training, then you can get the equipment installed on your car.

      Once you are evaluated by a rehab facility, they are required to notify your physician of their observations and recommendations. Your physician is then required by law to forward this info to the DMV.

      The DMV may or may not ever contact you regarding a driving test, but they will have been notified of your disability.

      If you have do not need equipment modifications in order to drive, then, theoretically the DMV does not ever need to know. However, having been incapacitated for so long as you were, your physician may have stated you cannot drive in his records.

      I would say this, if you have bad foot drop, foot weakness, leg weakness and/or sensory loss, and you can sort of get by driving – just go get yourself evaluated by a rehab facility for your fitness to drive. If they recommend equipment modifications – like hand controls, better safe than sorry than getting into an accident because you missed the brake pedal or could not react fast enough with your legs.

      This is just my opinion. The exposure to insurance issues, etc. is not worth it.

      I can no way drive without hand controls, and after about one week, they became second nature.

      Very best regards.

    • Anonymous
      November 8, 2006 at 3:32 am

      [QUOTE]This one’s a little weird. When I was in ICU and all morphed up, I had these incredible dreams that were not only very lucid (like hi-def) and realistic, but were extremely frightening. I had to be convinced by my family that these graphic scenes were not real and never occured.
      [/QUOTE]

      i got gbs in July this year. I was in a coma for 5 days and for the few days after i came out i had some really bizarre hallucinations that i were convinced were 100% real. From what i have read it is quite common for patients in icu to have hallucinations and to weave bits of rality into them – i know i was conscious of the names of nurses etc and they featured in my dreams. Even after i was “with it” i still imagined my surroundings were totally different to what they really were and i cant even blame drugs for that. I went back to the hospital for the first time the other week and it was so different to what i thought!

      The funny thing is my whole GBS experience is starting to fade from memory even though it has only been a few months since i got out of hospital, but those hallucinations are still so vivid. They dont worry me though (even though some were pretty traumatic at the time) i just laugh at the funny things i imagined – including there being a theme park underneath the hospital.

    • Anonymous
      November 8, 2006 at 5:50 am

      I wouldn’t say anything to the DMV.

      I have the problem with the blanket on my feet too. In bed I sleep on my side. When I sleep in my Lazy-Boy, which I do a lot, I wear soft slippers which keep my feet warm and take the weight of the blanket.

      I just started Neurontin and it’s seems to help, but I rely on long release Tylenol for that kind of pain/sensitivity. Don’t wait until it hurts. Take any meds on a schedule.

    • Anonymous
      November 8, 2006 at 8:15 pm

      Thank you to all for your helpful responses. This is terrific forum and you are all so willing to help! I’m finally getting to the point where I don’t have episodes of the “Why Me?” syndrome, and being able to share experiences and receiving insight from those who know is a huge lift.

      I will be attempting to reply to each of you individually, but be patient as I am a forum rookie.

      Thanks Again,
      Walt

    • Anonymous
      November 18, 2006 at 6:37 pm

      my husband had both his hand operated on and it was a lot of slow recovery, but he can a leat feed himself and open his hands about half was. keep trying jan sellars

    • Anonymous
      November 18, 2006 at 6:41 pm

      did anyone out there have surgery on their hand so they could function. would like to hear from you thanks

    • Anonymous
      November 18, 2006 at 8:05 pm

      😮 i have every systoms you do butloose the around the waist feeling. this sounds really weird but i feel such comfort in hearing someone is actually sick like i am. sometimes i just think is this all a bad dream someone is going to wake me from. i wish you the best and hope you keep recovering. this is my 3rd year with this devil of a syndrom.i hope to be able to chat with you more. god bless …kelly

    • Anonymous
      November 19, 2006 at 9:50 am

      The headache thing really got me too. Even though I am new to all of this (just developed GBS) I have been getting the same headaches since I got back from the hospital! They are terrible and the doctors blamed them on the spinal tap but I think its been to long for that. They are 100x worse then a migrane although have all the same symptoms (sensitivity to light and sounds)…

      Morphine and some really strong pain killers can cause vivid dreams. They can be perceived as real because they are so vivid. I don’t think its something that really only goes back to being in ICU but is more related to that due to the fact most people in ICU are on some sort of a painkiller.

    • Anonymous
      December 14, 2006 at 8:26 am

      [QUOTE=montanasmum]i got gbs in July this year. I was in a coma for 5 days and for the few days after i came out i had some really bizarre hallucinations that i were convinced were 100% real. From what i have read it is quite common for patients in icu to have hallucinations and to weave bits of rality into them – i know i was conscious of the names of nurses etc and they featured in my dreams. Even after i was “with it” i still imagined my surroundings were totally different to what they really were and i cant even blame drugs for that. I went back to the hospital for the first time the other week and it was so different to what i thought!

      The funny thing is my whole GBS experience is starting to fade from memory even though it has only been a few months since i got out of hospital, but those hallucinations are still so vivid. They dont worry me though (even though some were pretty traumatic at the time) i just laugh at the funny things i imagined – including there being a theme park underneath the hospital.[/QUOTE]
      I am probobaly 7 years post GBS. After a severe bout of hoarseness, unrelenting diarrhea, then quick paralysis of the lower extremities, I then went to the E.R. where I statrted to hallucinate, more like a dissasociative state whereas I was uncertain what I was looking at was really there.

      I was sent home with a diagnosis of “Masked Depression” (Imagine that?)(But I couldn’t walk). Fortunately, the paralysis quickly subsided and spent the next few weeks walking the beach in front of my home walking (stumbling) up too pylons in the sand to touch them, making sure that what I was looking at was really there. Along with this I didn’t know who my freinds were. This acute psychosis lasted for a few years, but also had other psychiatric disturbances lasting a few years to and include anti-social personality disorder etc etc etc.

      I am finally over all of this, though 7 years ago, I too remember these episodes as someome stated in “High Def” and vivid. Not sure what was worse, the physical symptoms or the associated psych symptoms. Whatever, I liken it to a “dance with insanity”.

      Mr. Lynn

    • Anonymous
      December 14, 2006 at 9:31 am

      Hi All: There is now research showing that patients with GBS can have hallucinaitons, visions and dream disturbances either in ICU or not, and not dependent on medication. I have written before that I experienced vivid out of the body experiences during my first three weeks and also wandered around the hospital driving nurses mad. This was pretty amazing as during the day I was unable even to turn over in bed by myself but in the night I actually jumped from bed and crawled all over the place. Here is an abstract from the research published in Brain:[QUOTE]

      We conducted a prospective controlled study of the clinical and biological determinants of the mental status abnormalities in 139 patients with Guillain-Barré syndrome (GBS) and 55 patients without GBS placed in the intensive care unit (ICU controls). There were mental status changes in 31% of GBS patients and in 16% of controls (odds ratio = 2.3; P = 0.04). In GBS patients, they included vivid dreams (19%), illusions (30%, including an illusory body tilt), hallucinations (60%, mainly visual) and delusions (70%, mostly paranoid). They appeared a median 9 days after disease onset (range 1-40 days, during the progression or the plateau of the disease), and lasted a median 8 days. Seven (16%) patients experienced the symptoms before their admission to the ICU. Hallucinations were frequently hypnagogic, occurring as soon as the patients closed their eyes. Autonomic dysfunction, assisted ventilation and high CSF protein levels were significant risk factors for abnormal mental status in GBS patients. CSF hypocretin-1 (a hypothalamic neuropeptide deficient in narcolepsy) levels, measured in 20 patients, were lower in GBS patients with hallucinations (555 ± 132 pg/ml) than in those without (664 ± 71 pg/ml, P = 0.03). Since the mental status abnormalities had dream-like aspects, we examined their association with rapid eye movement sleep (REM sleep) using continuous sleep monitoring in 13 GBS patients with (n = 7) and without (n = 6) hallucinations and 6 tetraplegic ICU controls without hallucinations. Although sleep was short and fragmented in all groups, REM sleep latency was shorter in GBS patients with hallucinations (56 ± 115 min) than in GBS patients without hallucinations (153 ± 130 min) and in controls (207 ± 179 min, P < 0.05). In addition, sleep structure was highly abnormal in hallucinators, with sleep onset in REM sleep periods (83%), abnormal eye movements during non-REM sleep (57%), high percentages of REM sleep without atonia (92 ± 22%), REM sleep behaviour disorders and autonomic dysfunction (100%), reminiscent of a status dissociatus. The sleep abnormalities, that were almost absent in non-hallucinated GBS patients, were not exclusively related to ICU conditions, since they also appeared out of ICU, and were reversible, disappearing when the mental status abnormalities vanished while the patients were still in ICU. In conclusion, the mental status abnormalities experienced by GBS patients are different from the ICU delirium, are strongly associated with autonomic dysfunction, severe forms of the disease and possibly with a transitory hypocretin-1 transmission decrease. Sleep studies suggest that mental status abnormalities are wakeful dreams caused by a sleep and dream-associated disorder (status dissociatus). Keywords: Guillain-Barré syndrome; hallucinations; hypocretin; ICU syndrome; REM sleep; REM sleep behaviour disorders; status dissociatus.[/QUOTE]

    • Anonymous
      December 14, 2006 at 5:23 pm

      Hi Walt,

      Welcome! Don’t worry about responding to everyone personally, you’ll get used to sharing publicly pretty quick 😉 I’m trying to say don’t overwhelm yourself with anything.

      At 10 years post and with a mild case, I still have problems with my feet at night. I start out with a heating pad that is on a 3 hour timer, but sometimes wake up sooner and my feet feel like they are going to explode. This is just part of our life now… it sucks, I know, but together we deal with it all.

      I kind of look forward to my my wacky dreams as I can dance and do all sorts of things in my dreams I can’t in real life. Some meds are better for dreaming than others (don’t like nightmares that scare me).

      Look forward to hearing more from you!