NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Botox (https://www.neurotalk.org/peripheral-neuropathy/89407-botox.html)

Quote:

Originally Posted by dshue (Post 521396)

I've a maddening situation, in which I'm thinking getting some poison shot in to me may do some good.

While I've full body SFN, a while back, as I've mentioned here before, I had a diagnostic lumbar puncture performed. Big mistake. My sympathetic nervous system is just way too wound up, and since the LP I've been afflicted with what feels like a muscle spasm in my skull, just on the right side, reaching to the top of my head, sometimes going down into my face, again only on the right side. My throat also constricts, sometimes scarily so, again just on the right side (the other of end of my spine has my right glute regularly spasiming, but that I can live with). Any physical activity greatly exacerbates the problem, and has left me incapacitated occasionally over the last nine months or so.

This pain is at times worse than the burning I get around my body, but it's interesting, there is always one of two going on (I'm just lucky I guess). The pain gatekeeper only lets one signal into my brain at a time.

So we were thinking that a few strateically placed shots of botox might be of benefit. My doctor is serious research guy, not a cosmetic surgeon type, at a major hospital. I initiated this idea with my neurologist, and the botox guy sounds like he knows what he's talking about.

What I'm asking is does anyone have any experience with botox. If so, did getting the shots make things better? Did they make things worse (a scenerio which weighs heavily upon me)?

-- Dennis

Unfortunately I was in a MVA 5 years ago and then developed cervical dystonia (torticollis...where your head can tilt sideways, forward, or backward) Also at times there are tremors that cannot be controlled. This is very painful. I have been receiving Botox injections in my neck for the last 5 years or so and they do help with the torticollis. I also have developed peripheral neuropathy. Have no idea whether this could possibly have made things worse neuropathy wise. The literature and doctors say "no" but you know how that goes. It is EXTREMELY important that these injections be given by an EXPERT. A regular neurologist is NOT enough. They should be given by a MDS (movement disorder specialist). Frequently they are given with the use of an EMG (we all know what that is, right?). This helps the neurologist target the proper muscle and avoid those that are not causing problems. I can empathize with what you are going thru. It is awful to feel like you have BOTH.

I have had tons of it in my forehead :) For cosmetic purposes, but I also ahve had it in my scapular regions as weell as the thoracic areas, and I have mixed results had alot of success in the scapular areas but not so much the other. My forehead however, looks fabulous! :0

I too, have been told botox injections may help with my headaches. Injections to the forehead, to relax the muscle, to keep it from tensing. I have decided against it. To begin with, if that area is tensing, it's because of the headaches, not causing them. I know this, without another opinion. The headaches are always there, have been for a very long time. Botox to the forehead will only mask part of the problem and not get at the root. I have heard too many ugly stories about botox, and the thought of injecting some foreign matter into my intolerance ridden body is more than I can fathom. I cancelled the appt with the neurologist who was going to evaluate me for the botox. I generally do anything a doctor wants me to try, but this time, it's not going to happen.

Quote:

Originally Posted by NaeNae (Post 525671)

I couldnt help but laugh since I have been getting Botox to my neck for 5 years...one side REALLY looks great...alas, the other side looks my age or worse probably from the continual conteractions of my neck pulling the opposite way (even though the Botox does help). If it were not for the intense pain and severe tilting without the Botox, I would not be using it. Botox for all intense and purposes scares me but then so does pretty much everything else. At times I would like to TRY to throw everything out and see what happens but, of course, I dont. Guess, I'll take what little relief I can get, particularly with the PN and possible fibromyalgia. In other words, I hurt a lot.