Glacierwolf

Your Replies

  • February 28, 2024 at 10:37 pm

    Fairly odd mother,

    I have slowly cut back on my drug use for GBS pain.  What is definitely working for my leg pain now – Tramadol HCI ER 24HR 100 MG – this is a 24 hour time release.  I take two.

    The medication is great.  However, it has been a real pain in the ass to deal with at the pharmacy since I am retired military, local military hospital does not carry it, and Tricare for some reason won’t pay ……. but Tricare are being total jerks and keeping it to precisely 30 day.  They day I run out – is the day I can get it refilled. And if that falls on a weekend I have hell to pay even with a civilian pharmacy.

    August 28, 2023 at 12:13 am

    I had a head to toe MRI scheduled on a machine that seemed to take forever to just do my skull.  I barely held it together on the skull one.  Usually, a person can sit quietly and think of things – the noise was so, loud, intrusive and pitch changing I found it impossible to ignore.  Toss in the fact it would seem to wind down and make me think it was finally over – darn thing would start up again.

    For the much longer one I told the doc they needed to give me something’ They gave me a prescription for 10mg of valium to take 2-3hrs before the MRI and a second one at the beginning of the MRI.  That worked fine.

    Kevin M

    September 26, 2021 at 11:52 am

    Unfortunately, yes.

    I had GBS that put me in a wheel chair for a month.  Shortly after being able to walk again my right leg would occasionally spasm.  Usually just as I was falling asleep.  Docs tried several meds but they either interfered with others I was taking or the side effects were worse than the issue.  As the spasm’s got worse, a doc put me on Ropinirole 1mg. That worked.  Taken 30 minutes before bedtime and I was A-OK.

    I wish the story ended there.  The leg spasms migrated to the left leg.  At one time I had issues with both.  Now, years later the right leg is a happy camper and I am taking it for the left leg only.  I am wondering if it will disappear in time like the right leg spasms did.

    I am pretty happy with the Ropinirole

     

    Kevin M

    September 24, 2021 at 1:08 pm

    Other strange thing that crept in after the pain subsided – touching anything with my hands felt like I was receiving a mild electric shock.  A real issue since I work as an electronics technician/engineer and deal with power.

    I did qualify for a temporary handicap parking permit.  That was handy.  I did not have to carry things so far.  I was so sad when that thing expired!

    September 23, 2021 at 4:04 pm

    Yes.  My GBS happened in 2004.  When feelings began to come back to my legs it was God awful painful.  I was taking 180 5/325 Percocet a month at night to sleep and 180 Tramadol per month to function at work in the daytime.  Over five years I was able to back off the Percocet but stuck with high numbers of Tramadol.  Now, 17 years later, I am still taking 90 to 110 Tramadol per month for the leg pain.

    September 6, 2021 at 5:01 pm

    I have some info that might be useful to you.  2004 I came down with GBS and Spinal Meningitis after orthrogantic surgery – where they remove you lower and upper jaw, cut up the lower jaw and fit them both back together.  Shortly after my feet and hands got cold, ass numb, and by day 7 I was in a wheelchair.  I was air-medivac from Alaska to Madigan Army hospital outside of Seattle.  I had terrible leg pain – leaving the hospital I was taking 180+ Percocet’s 5mg a month, then switched to Tramadol after a year….. dialed one down and the other up.  17 years later I can walk and sense of touch is fine, but, still doing 4-6 Ultram/Tramadol a day for leg pain.

    First – get the hell off that gabapentin.  Right now!  Docs put me on that to replace the Tramadol and that crap made me into a zombie.  I would fall asleep at the table.  Fall asleep watching tv.  Worse yet, I would ‘go out’ for 3-15 minutes and ‘come back’ not even knowing it happened.  At home, I would leave a trail of destruction behind me… peanut butter jars not closed or put away, knife with peanut butter not put in the dishwasher and bread not put away, LOL.  Wife said it was like living with a 7 year old.

    Second.  Have faith, things will get better.  I used to be an Olympic class military shooter – pistol and long distance rifle – I lost that, but, so far it’s the only thing.  I’m still good enough for hunting and fun shooting with friends, but, I wont be showing up at the state championships anymore.   Considering the basket case I was when GBS hit – I think I got off easy.

    When I got my Covit shots – I stashed extra cash with the family and paid all the family bills forward thinking I would have a reaction like yours and end up back at Madigan….. especially since having GBS prior.   Nope, no problem.  I didn’t even get boo boo arm.

    Last.  Don’t panic.  It will get better.  My wife put me on allot of homeopathic ‘nuts and twigs’ stuff that I know helped me allot.  If you are interested, reply, and I will have her tell me all the weird nerve helping over-the-counter stuff was.

    On a funny note.  I am a retired chief, E-7.  When they flew me into Madigan I was sick as a dog and they entered me as O-7, Admiral.  At first I thought it was just the Army giving me a hard time calling me “Admiral” all the time.  Come day 4 when I was feeling better I collared someone on it.  No matter what the docs and nurses did, they could not make ‘Admiral’ go away!  I actually had the General show up and ask if he was speaking to an Admiral of a chief, LOL.  4 weeks I stayed as ‘Admiral’ in the system.  I am very, very happy I went to Madigan…they had 7 neurologists on staff and the town I live in, although the 3rd largest in Alaska, only had one.

    Good luck!

    Kevin

    February 18, 2021 at 10:40 am

    I had full blown GBS in 2004, put me in a wheel chair. Was back to work in 4 months but still have minor issues from GBS to this day – leg pain/discomfort. All during 2020 I ask every doctor I met – even in the ER getting my finger stitched I asked about the Covit-19 vaccines, taking it with my GBS background. They had no real answer, no data, no info – all said to put off the vaccine until someone else with a GBS history tried it.

    Not much choice. We get Covit-19 and then deal with that + it triggering a second GBS episode? Sounds fatal to me. Take the vaccine and maybe it triggers a second GBS episode? Ok, I lived through that once. I know the symptoms and can get into the doc faster than last time.

    On that note, I had my first Pfizer dose 21 January and not one single issue. Second dose was a week ago on Feb 11 and no issues at all.

    Well one issue – I have a smile on my face now when thinking about this subject!

    If my condition changes – I will pop in here and update.