First post and wanted to introduce ourselves (I'm David, writing for my wife, Alexi who has CRPS) Alexi was diagnosed maybe 8 or 9 years ago. Her CRPS was kicked off as a consequence of a discectomy and fusion of several cervical vertebrae (C2-5?) she underwent to address degenerative disc disease. After a typical convalescence the pain lingered. Worked with a pain management doctor over a year as the symptoms developed and worsened. Got a definitive diagnosis after a test for Horner's syndrome. Alexi presents nearly all the symptoms - the neuropathic pain, Allodynia, Edema and discoloration (more prominent on one side of her body - I can't recall if its the left side or the right side), hyper sensitivity to touch, temperature and sound. When untreated the symptoms can worsen to skin peeling, fingers curling and immobile, difficulty standing and walking, all with the extreme pain sensations.
Its been an ordeal figuring this all out, finding compassionate and informed medical professionals, scheduling the expensive inpatient treatments. Currently, Alexi is managing the daily pain with opiate medication and Lyrica and undergoes inpatient Ketamine Infusion therapy hospital stays which have offered the best results and even put the symptoms in remission.
She went to Dr. Timothy Lubenow at Rush University Medical Center in Chicago and more recently Dr. Semih Gungor at the Hospital for Special Surgery in New York. About a month ago Alexi's CRPS symptoms were returning and she recognized that she was coming out of remission. So she contacted Dr. Gungor to schedule an infusion treatment only to learn, much to her dismay, that Dr. Gungor has decided (after 7 years as a patient) that he will no longer treat her! (that's another topic for a separate post) leaving us "high and dry". So now we're scrambling to find new doctor who will perform the Ketamine Infusion (and accepts our insurance), and that's part of what brings us to this forum. We've found a doctor in New York who performs outpatient booster infusions, Dr. Glen Brooks of New York Ketamine Infusions LLC, but he does not participate with insurers, so we're looking at paying 50% of the bill out of pocket if my insurance covers as Out-of-Network.
Anyway, I (David, the husband) figured we can appeal to this forum for support in this process and also, due to extensive experience battling this disease, join the commuinty and offer help to others just starting to confront CRPS.
David and Alexi

Welcome to you both. I am so sorry to hear what you are going through. I just started seeing Dr. Lubenow myself.

I have never gotten Ketamine treatments and I live in Chicago so I'm sorry that I don't have any advice to offer on that front. Perhaps start a new thread asking for the information? Usually that is the best way for the post to be seen by more people.

I have found a lot of great advice and support here on this forum over the years...it is an excellent site for that and the members are from all over. There's got to be a place closer to where you live that is in network with your insurance. It makes me angry that a doctor would just refuse to see your wife after 7 years as a patient...that is just so upsetting. We all know that getting treatment in a timely manner is SO important with this condition.

Take care and keep us updated on how you are doing. I hope that you are able to get treatment soon. Hugs.

I'm back after a long period of silence.

Life got the better of me.

I have a new condition to add to the mix and that is Menière's disease. Got this in recent years. Oh boy. Thank goodness it is under control with medications right now, but one of my meds is going to be removed from the market here (is already), so my doctor is needing to come up with an alternative to it - if there is one. Bummer, and a pretty big one at that!

Anyway, good to be back!

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.