[Sonny1]

Hi all, I am sure both of these items have been inquired on b4, but i would like to hear feedback on one or both of these (Topamax and tens unit). I have researched them both for RSD/CRPS and would really like to hear actual people's experiences with each.

My surgeon prescribed me Topamax today for nerve pain and of course WC needs to investigate it b4 allowing the script to be filled. Surgeon also wants to get me a tens unit. My RSD/CRPS is in my hands and forearms.

I had my 4th nerve block yesterday and am not getting the results I hoped for considering the needle in my throat! I will try 2 more, then I think I am done with those, especially since after the relief I do get, the pain goes right back to where it started. 24 hours relief is not enough for me to have that kind of injection. (in dangerous territory)

I am looking forward to trying these 2 new items and hopefully will get some relief without needles.

Thanks!

[Jomar]

Is the Dr planning to Rx a few sessions of PT using a TENS on you to see if it will help you before actually trying to have wc pay for one?

Although TENS prices are fairly cheap now , less than 50.00 bucks usually on Amazon and most medical product websites. If wc or a rx'd purchase I'm sure the cost would be higher ...

So if you find it helps maybe buy your own if wc won't approve it, or takes a long time to decide, then send the bill to them for reimbursement.??

[daylilyfan]

The tens unit might be inexpensive but I find the little pads that you stick on really expensive. The batteries mine take are just slightly different than a 9 volt so you have to buy them from Empi. And, the wires don't last forever. The little pads wear out and start to give you little shocks so you have to replace them regularly. I have trouble with them sticking, so I had to buy bottles of stuff to put on the skin to get them to stick. PT gave me sheets to show where to put them. I tried all kinds of things with it. On an hour off an hour up to wearing up to 20 hours. Low settings, high settings. Just didn't do anything for RSD. However, when I pull a muscle or my back is acting up, it's great.

Topamax has done as much for me as "pain" meds - but that's maybe taking me from an 8/9 to a 6/7. But, I have to take pretty high does to get much relief. I have a constant terrible headache from my RSD now being in my upper back, shoulders, neck, head, jaw.... and it has calmed that to a dull roar. My new neurologist is taking my dose up higher than I have ever been and its helping a bit more. For the last week, I have been on 200mg twice a day and I am sleeping 5 hours straight at night which I have not done in years and years. I have very few side effects - which I had a lot of them with other meds. Dry mouth, dry eyes, dry skin. Soda, like Mt. Dew or Pepsi (I drank diet) taste terrible and I crave water.... not a bad thing as I normally don't like drinking water.

I also have peripheral neuropathy, which Topamax has helped.

I get the messed up word side effect, but I don't work, ,so it doesn't matter. I had it when I wasn't on it to - I think it comes from being in a large amount of pain with no relief for so long. I've had RSD for 10 years and no pain med has helped me enough to warrent taking it.

[SandyRI]

I've been taking 200 mg of Topamax for a long time. It helps enormously with my head pain. When I tried to taper off of it, my migraines came back with a vengeance.

My RSD started in my right shoulder, from a brachial plexus stretch injury and a torn rotator cuff, then 2 repair surgeries. It spread to my cervical spine and occipital area, I have a LOT of trouble with my head. I also have RSD in my right leg and I suspect in parts of my feet and hands - there are ongoing issues that tons of ketamine and exercise helps to keep at moderate levels for the most part.

I also take Fiorcet for my head pain (several times a day) and Frova (a triptan). There are others, but those are the ones that I use for my head. And I will put Voltaren gel in my hair on my scalp when it throbs, and that helps too....

Try to keep moving if you can. I find that its been the best for me.

Good luck! Sandy

[Sonny1]

Thanks guys! I am looking forward to the nice summer, I have a pool and love water exercise. I keep the arms moving and stretching at home, plus @ PT. I had a tens unit back in 1996 for my back from a car accident. I am sure they are different now and I am sure it would be a different feeling with nerves rather than muscles (car accident). I am willing to try new things, just not up for those darn injections. Those injections make me sleep for the rest of the day after getting them, not to mention the bruise on my neck and swelling! Has there been any long term study on the effect of that anisthetic being put in our bodies endlessly?

As far as the Topomax, i am willing to try, even if for a little relief. To me it is better than taking narcotic med's. I do not take them unless absolutely have to!!!

any more input would be great!!