CRPSbe,

Welcome back, I too have Meniere'sDisease! Ugh is all I can say. What meds are you taking to control it?

I'm from Belgium so meds might be called differently. I'll try and list the generic names in brackets if they aren't generics already (I take some generics).

* Betahistine (betahistine) 6 tabs a day, every 3H a tablet.
* Sulpiride (sulpiride) 2 x 1/2 a tab a day, morning & late afternoon.
* Dytenzide (hydrochloorthiazide/triamtereen) - it's a combo diuretic, 2x 1 tab, morning and afternoon --> this one has recently gone off the market.

So now my doctor is needing to look for an alternative.

Crps be,

I found betahistine to be the most helpful, until my batches were incorrectly compounded. I lost 50% of my hearing in my right ear. If you ever think something is off, check the betahistine immediately.

I also took the hctz, along with low dose Valium. I carried compazine suppositories in my purse for emergencies.

About 2 years ago, just before I got CRPS my Meniere's abated. I hope yours abates, too, it is horrible.

I previously always got the "Betaserc" (betahistine name brand) by the company Abbott. That got taken over by the company Mylan. The packaging was the same, everything the same except the brand name in the corner was different. Now I didn't even realize this, and kept taking them. Then I had one incident in my bathroom where I almost fell over from losing balance (just like that). And my ear kept popping (always my right ear).

Then I checked the box all over. And bingo!

Now I had taken generics by Mylan years ago as well and had the same kind of experience.

Now, normally if they keep the packaging the same, they shouldn't be able to touch the formula either, right? Well, guess again.

There is a generic brand in the EU that is big called "EG, Eurogenerics" and with that generic I have *never* had an issue, so back to those it was. I was okay with the ones by Abbott too (but then they got taken over).

Mine hasn't abated in the slightest, and it's been a number of years now (about 4 to 5 or so).

I don't react to valium whatsoever. Big mystery as to why, but I just don't feel like I've taken anything when I do take them.

I was dose sensitive. Too little and no effect, but once I got the betahistine dose sweet spot it was wonderful, my tinnitus diminished and my hearing improved.

I'm glad for that!

Hi Everyone!

I joined this group after searching the internet for a fairly active CRPS support group and stumbling upon PurpleFoot721's post about ketamine infusions. I had to respond, so here I am.

I broke my wrist in 2008 and after a painful 6 weeks in a cast, my ortho checked my x-ray and removed the cast. My hand, fingers, wrist and part of the arm were swollen and discolored. It looked like a lobster claw. I could not even open the claw. He touched my hand and I almost passed out. The next thing I knew he was sending me to a pain management doctor and a certified hand therapist. He said I needed to have a nerve block and daily therapy. He wrote RSD as a diagnosis but did not explain what it was. When I googled RSD, the only information that I received indicated intense burning pain. At that time, my pain was intense but it was not burning so I doubted the diagnosis. Fortunately, my ortho continued to treat it as RSD. I was unable to take the medications he gave me for pain, but many months of therapy (great health insurance) really helped. The claw opened and that limb became functional.

The pain continued and the nature of it changed. My PCP recommended Dr. Robert Schwartzman at Drexel. I had to wait close to 2 years for my appointment with him. He confirmed the diagnosis. He has to be one of the most observant doctors I have ever met. He pointed out little changes that I had not even noticed. He started me on ketamine infusions which have helped a lot. There have been a few months of remission but it always returns, just not as bad as the original pain. It has spread to other parts of my body (breaking my foot 2 years ago didn't help). Two infusion days every 3 months usually equal 2 to 2 1/2 months of no pain to low pain.

That's my CRPS/RSD story in a nutshell. I hope that I can offer support to others. Best wishes for low pain and happy days.

OMG Shay, you've had your fair share of it, haven't you! I'm so sorry to hear that it has spread. Spread in me too.

First from both knees, to both legs fully (disability) and then in 2008 it spread to my arms/hands/shoulders (for which the treatment still works thank God).

My legs are totaled I'm afraid.

So sorry to hear about all that spread. It is interesting that you said that the treatment still works for your arms/hands/shoulders. I have also found that the ketamine infusions wipe out the pain in the spread areas and keep it away for longer than in the original area.

Right now I am waiting for some gastro testing. My PM told me that it appears to be running the full body course. I feel that for the most part I have been fortunate. I can still walk and use all limbs. I really want to have this heartburn and slow movement of food checked out. I have had heartburn for many years, long before the CRPS, but it is more intense now. I am hoping for the least harmful of causes.

Lately it seems like there is always some health issue popping up. I think part of it is my age and not CRPS.

Wishing you a low/no pain day.

Shay

I fear there's been a little assuming done here. I don't get infusions for my arms/hands/shoulders, but something else entirely (calcitonin shots). It is *the* most well-known treatment for CRPS in Belgium for lower stages.