Following leg surgery [which lasted for several HOURS?] and I did question my neuro about this. afterwards.. He likened it to a ‘positional neuropathy’, where being in one place too long caused undue pressure on some nerves-thus set them off kilter. I was advised to ‘wait and see’. Truly, patience and not stressing about it is the best way to deal with it! I for one, did NOT like having to live in Depends for a few months? I now do not. Trying NOT to STRESS? Was much harder for sure, but paid off in the long run.
Key to getting by without embarassment is monitoring when juices go in? Then out. Time Doctor appts when You KNOW you won’t have issues and go from there. And don’t rely on doc office’s facilities? I’ve often found them ‘compliant w/handicap’ access? But not really easy to get into or out of!
Key to this all, is knowing how long intakes take to out-takes? Once you’ve got that down pat? It becomes far easier, and, thus w/less stress? Life Can become normal-ish afterwards. To try and PUSH things? Doesn’t work, Your body needs time to heal and recuperate from whatever insults that particular area had… Ask your docs? It’s better and easier [in my HO], to let nature heal and take it’s course. After 20 months from my problems’ onset? I’m now at about 20% loss of function, far better than 95%? And, I’m cool about the next 20% and get OVER IT!
I truly hope this helps? It’s scary at times to find such issues happening! I hope this abates and soon! Hugs and hope!!!!!!!!!!

My feedback is that from the time I dropped from 1 infusion per week to 1 infusion in 2 weeks I slowly, slowly got weaker over the 6 month period.

During my 5 months on 2 times once a month, which preceded 3 months of 2 times per week I not only did not maintain the 5 day loading dose improvement, I steadily got worse at a faster rate.

I do not know a good way to figure out how much is enough or which doctor will give it to you except by trial and error.

I used to stay home as much as possible because my bladder was talking to me all the time. I, too, encountered restrooms that were just too hard to get into and out of. So along came the “honey pot”. I use an empty coffee container. It works awesome. I just slide forward in the seat, place the jug underneath and peeeeee into the jug. I keep wipes in the vehicle along with tissue or paper towels. I don’t use it much anymore- but I always keep it in there in case. When I first started using this, I wore a skirt with no undies. That works the best. You can use the container and nobody has a clue. I used to be totally imbarrised about this- but I am a changed woman now.

And, for a long term? Depends are NOT an answer! [Over 6 months]
I knew my own situation was damage from surgeries? So, I waited and healed.
Others are not so lucky. Have no docs suggested the Kegel exercises or the like? Why soo quick to surge and/or medicate? Ask/demand the less intrusive alternative? And then get into a discussion as to WHY NOT?
As for the issue of every 2 hours? That’s what I meant about what goes in and then out…and the ‘timing’!
This ‘timing’? Doesn’t lead to anything such as infections, but is simply a matter of intake and outgo at ‘convenient times’ for you!
Just say no tho? When a doc asks for a urine sample? Not there to give, so’s I could come see you! DUH?
Frustrated yes! Embarassed? Not really-Why? Because it can come with the ‘territory’. Accept it as that? The Territory? Then, find out options as to what to DO about it. If you don’t try? Misery and frustration could be your continual problem. Better to try and ‘fix’ it now and get it off your list of problems! One less issue to deal with? IS truly! One less… Hope and good things!

just a reminder….it MIGHT not be related to your cidp–you could possibly just have an overactive bladder, which can be controlled with a simple medication. Probably a long shot, but worth checking into—-sometimes we or the docs are too quick to blame things on the cidp because its such an unpredictable disease….best wishes. Lori

my father in law ahd that complaint with lyrica. He was always lightheaded and always had swelling, he was however on the highest dose along with neurotnin, tramadol, tegretol and morphine sometimes as needed.

You mention that your doctor “took him off everything”. How did he do that? Every drug you mentioned has to be “tapered” off of…you can’t just “stop” them. Even with titration, or tapering, you can still have side-effects.

Just wondering if you’ve considered that these “symptoms” might be withdrawal or side-effects of stopping the other meds, especially given that they started when he STOPPED taking certain meds.

Elmo

[I]I agree with Elmo. I can’t imagine a neuro who would remove high-powered meds willy/nilly. I’m appalled.[/I]

I agree with Elmo. Everything I have read about antidepressants and these drugs says that you have to taper them down, you cannot abruptly terminate them. It sounds like he is having “brain zaps” and is most likely from being taken off the drug so abruptly, not the Lyrica. These drugs interfere with the neurotransmitters. Is there a way that the doctor can do some sort of weaning or decreasing the one and slowly adding the other?

[FONT=”Microsoft Sans Serif”]hey rhonda, when i was healing, i had extreme zingers– still get one here and again. it doesn’t sound like he was off his meds long enough for such an intense withdrawal reaction– consider strongly the possibility that the cytoxan is pushing the cidp back so that ryan is beginning to heal– when myelin repairs itself, zingers are quite common. i used to use the analogy of having a scab on your knee– each time you bend your leg you pull and stretch the scab– and it often stings right? well, imagine the sensory reaction to nerves, with all of that electricity…[/FONT]

Alice makes a good point; could be nerves healing and trying to send signals through pathways that haven’t been used for a while.

Just as a side note: Opiate withdrawal starts wthin 8-10 hours of the last dose; SSRI or other seratonin drugs can cause withdrawal within 12-24 hours of stopping, if not tapered.

Elmo

It could be some healing going on.. I agree with Alice and Elmo… Hopefully, that is it…
I had a lot of electrical zaps especially in the thigh area when I was healing..
The lightheadness might be due to the drugs, or it may be somevertigo/balance issues that might be due to weakness and numbness/… Like your brain is sending out signals, but is getting incomplete feedback from the rest of your body….

Just guessing… Sounds like he is getting better? Deanop

I’m on cymbalta and I get brain zaps, but they’re not debilitating. I always get that electrical nerve pain, but that’s not related to the cymbalta, that’s just the CIDP.

But neurontin doesn’t work for me either. I find the cymbalta has been good for the general pain, and if it gets very bad I take a muscle relaxant. Luckily, I don’t have to take those very often.

-marie

[FONT=”Microsoft Sans Serif”]hey rhonda, i had the light headed feeling too. especially after getting up from a seated or horizontal position. in fact, i fainted a few times. the chemo and the reacting cidp are bound to make him feel lots of nasty things… i doubt he’s having mini seizures, although i can appreciate a mother’s fear and angst. glad you are running it buy his doctor but– remember this– the oncologist doesn’t know cidp well and the neurologist doesn’t know the effects of cytoxan well– so they may not be able to speak directly to these symptoms. having had cidp and cytoxan, i can tell you that it sounds pretty normal to me. hope that helps some…
alice[/FONT]

I have the tingling/numbness in my legs and feet but of course I feel it more in my feet. I am told it is just good ol CIDP.

I am like the others and feel this is a good thing for me. Feeling anything is better than nothing in my case.

I was on Neurotin probably a year ago and had a bad reaction. I take 150 mg of Lyrica a day and am now receiving IVIG and of course a list of other meds.

Telling you not too worry won’t help we all need the reassurance from our doctors but also always remember and even my doctors will tell me ….I am my best doctor!

Hope this helps, still feeling my way around the forum.
Shelley

Neurontin didn’t work so well for me, neither did lyrica, but Topomax did. It is generic now and a whole lot cheaper. I take it in conjunction witrh my other stuff. It doesn’t seem to mess up the other stuff I take.

Topomax. It has it’s side effects as well. I don’t think anything we take does not have side effects. For me, this drug stopped the zingers better than any other.

Remember, we are all a little different. what works for one may not work as well for another, or it may work better. I think you are finding that out by now.

Keep your head up, you will make it. There is a drug regimen that will be helpful when you find it. I know that when I finally got to the right drugs at the right dosage, I felt so much better. Hang in there and keep on working at it. You will get there.

Dick S

Hi Lisa, I read over some of your old posts and what a surprise. I too went to Mayo–Feb.08, and saw the same Dr. He left me up in the air about dx & treatment. I was on Lyrica and Cymbalta, but had not had an IVIG treatment in almost a year then. His only suggestion was to continue present meds and do swimming pool therapy. I came away very depressed, wrote to him, and he called me. Again with no more answers. He seemed to doubt I had GBS or CIDP since I had no changes with no IVIG. I have no Neuro (My original Dr. who dx is no longer here) and I have skipped around to various other cities and tried other Neuros. and they all seemed very confused and unsure what to do. Sooo, I took myself off all the meds, with internal med dr. ok, and just live sort of dormant (if humans can be that):confused: Have a power chair and alot of pain.
I live near Yankton, wonder where you are and who you see there.
Hope you feel better soon. Regina

oh gosh!!! smaller world yet. I too saw Dr. Z. and that visit did not go too well, Think it was kind of an office mix up or something. Long story.
BUT listen to this. We live on the river, Ne. side. Stay in touch and maybe we can meet up this summer. We have a pontoon, which I can get to now as hubby got a golf cart last year to get me to our dock.
Stay in touch….Regina