[hope4thebest]

My P.C. doc is weaning me off neurontin to try a new med in its place (topomax)..
I thought to myself, (sheesh, I can still think...) since I am weaning off the Neurontin maybe I'll try and not take any meds at all and see if I can tolerate it...
But, then I wonder if this could cause spread!
Has anyone tried Topomax?

To med or not to med...that is the question
Cold turkey or brain fog??

Hugs from Hope4thebest

[fmichael]

Originally Posted by hope4thebest

My P.C. doc is weaning me off neurontin to try a new med in its place (topomax)..
I thought to myself, (sheesh, I can still think...) since I am weaning off the Neurontin maybe I'll try and not take any meds at all and see if I can tolerate it...
But, then I wonder if this could cause spread!
Has anyone tried Topomax?

To med or not to med...that is the question
Cold turkey or brain fog??

Hugs from Hope4thebest

Dear H4tB -

Short of agressive therapies (and BTW Dr. Richeiner has applied to USC for permission to do ketamine infusions there - following Dr. Schwartzman's protocals - and USC always takes insurance) I don't think that much of what we do effects the march of the Big Brain Fog.

Sure didn't with me, and I hit it with almost everything I could, although I sure wish Cal. law would have allowed RUL ECT for CRPS; I had an in-patient treatment using ketamine as the general anesthetic all lined up before the higher ups in the psychiatry dept. put the kibosh on it. Current Dx: organic brain damage 310.1

And looking at Schwartzman's article, I figure either we get it (in various degrees) or we don't. http://www.rsds.org/2/library/articl...ychol_2010.pdf

C'est la garre.

Mike

[bernclay2]

Hi Hope4.

I am not a doctor, but my experience has been that more or less medication does not make much difference regarding the spread of CRPS. I have experienced CRPS spread both off and on medication, and at low and high levels of medication.

I think what is more important, if it’s possible, is making sure to correct whatever initiated the CRPS. For me, I had a crushed nerve that remained in an agitated state for a long period of time. Had I been able to correct the agitation sooner I may have had more success treating and reversing the CRPS. By the time I had corrective surgery the CRPS was already well entrenched and spreading. Of course depending on each situation, surgery or other correction may not apply.

I think properly monitored exercise is more beneficial for preventing CRPS spread than medication or no medication. But if the source of agitation has not been corrected, then exercise will possibly worsen the CRPS. Meaning, the exercise I did before the corrective surgery only made it worse, the exercise I did after the corrective surgery was beneficial (although for me it was already too late to stop the CRPS spread).

Not relating to spread, some doctors I have seen have said that not medicating, and just taking the severe chronic pain, is not good because the constant pain overload can create other complications in the body. I don’t know if they all agree on that but at least some have said this to me. I guess it would depend on how severe the chronic pain is.

All of this is just my opinion based on my own experience. It is very possible that others may disagree having had different results in their CRPS experience. CRPS can be very different for each person.

I hope this was helpful. God Bless You.

Bernclay-

[LIT LOVE]

I refused to take opiates for years, in large part because there was a history of addiction in the family. My doc at the time, finally prescribed a time released version without telling me what I was taking.

What I have found is that it's one thing to "tough it out" for a closed period of time. When that period extends to months and years, when you never get any relief, when REM sleep can't be reached, when pain becomes personality changing, it can be, shall I say, difficult? Is it safe to drive when you're Not medicated? Etc. Just somethings to keep in mind...

[keep smilin]

Originally Posted by LIT LOVE

I refused to take opiates for years, in large part because there was a history of addiction in the family. My doc at the time, finally prescribed a time released version without telling me what I was taking.

What I have found is that it's one thing to "tough it out" for a closed period of time. When that period extends to months and years, when you never get any relief, when REM sleep can't be reached, when pain becomes personality changing, it can be, shall I say, difficult? Is it safe to drive when you're Not medicated? Etc. Just somethings to keep in mind...

H4thb....

ME!!!!!!!!!!!!! I take NOTHING!!!!! Not by my choice as my pain is head popping pain..constantly..but my tummy will NOT allow me to take anything..dear god it is hard to live this way that is why I have had other ways to keep my mind and heart busy... Mkaing the negatives of RSD into positives..live by that and i have learned to not think about my future as I don't control that anyway.... As far as spread.. I don't believe it matters only..mean pain without meds..can wear you out quicker..but as far as spread..I believe RSD will do what it wants no matter what!!

Love,. Kathy

[Kakimbo]

Hi Everyone!

GREAT TOPIC! I don't have any professional experience, but with me I have found when I would wean off meds, then go without; my pain would spread (not documented) and of course my pain levels would skyrocket. I would find myself reacting emotionally (sp?) to the pain and becoming a not so loving person. I DID however find that when I was med-free AND I changed my diet to all healthy stuff (V-8 juice, hard-boiled eggs, tons of veggies and gallons of water), my pain levels seemed to peak then hold stable. (Not as many episodes of electric jolts and bone crushing pain) I also found that when I would go back on meds it was much harder to get the pain under control again. It's like once the pain gets out of control I cannot get ahead of it. If that makes any sense. I am curious to see what others say...

Kim

[allentgamer]

For the first couple of years I took no pain meds, then my doctor finally talked me into it. As time went by we both realized it wasnt helping much so he started trying different and stronger meds.

Then my doctor decided not to accept my insurance amd I went cold turkey coming off some serious medications. That nearly killed me, but no spread. I didnt take another pain med for a bit over 2 years, and learned that we need to find things that distract is from thinking about pain. For me it was online gaming because of the lack of physically being able to do things.

Once I was approved for medicare I was able to get back in to see a doctor, and of course chose the one I knew amd liked the best. But this time I am only on a lower strength norco for pain, and try to balance my life with distractions and meds.

The spread seems to happen whenever, or where ever it wants and nothing we do can stop it. Just try not to get physically injured because that seems to cause it to spread to the injured area.

Hope this helps

[suz66]

Originally Posted by hope4thebest

My P.C. doc is weaning me off neurontin to try a new med in its place (topomax)..
I thought to myself, (sheesh, I can still think...) since I am weaning off the Neurontin maybe I'll try and not take any meds at all and see if I can tolerate it...
But, then I wonder if this could cause spread!
Has anyone tried Topomax?

To med or not to med...that is the question
Cold turkey or brain fog??

Hugs from Hope4thebest

I believe that your body adjusts.....or at least mine did. I only take ibuprofen when the pain is bad and I have Meloxicam for when it is really bad. I am learning to tolerate and am thankful that my condition is not as advanced as many others on here. I have allergic reactions to all the pain meds I have tried. The only thing with the meloxicam is I feel medicine heady the whole next day. Have not tried Topomax, but wish you all the best. A towel warmed in the microwave or a warm bath works wonders. Hope this helps you and good luck. I would not choose the brain fog...I have teens and they might run amock if I wasn't "all there." Ha! They may think that anyway. Tee Hee!

[SandyRI]

Dear H4TB,

I currently take Topamax along with my other meds. I no longer use opiods for my pain, but I did for a long time. Before I was on Topamax I tried both Lyrica and Neurontin. Both of them I started and stopped within a few weeks - they made my dizzy and stupid. I also gained weight (YUK!!) while taking them. Topamax does not have that side effect. It does make things taste funny, and has turned me off to certain foods and drinks.

Topamax helps with head pain/migraines, that is the primary reason I switched to it. When my RSD was raging, I could tell if I missed a dose - the back of my neck and my head and right shoulder would start to burn, especially in bad weather. I take 200 mg a day. My doc told me to increase it to 300 mg, but I hated how I felt on such a high dose, so I went back down to 200.

The ketamine infusions have been reasonably succesful for me, but I am still receiving boosters quite frequently (2x a week for the rest of this month, and then once a week for the month of June). At some point perhaps I will be able to drop the Topamax and rest of my meds, just like I was able to eliminate my opiods, and try living a drug free life...I will have to check with my doc on that one.

Good luck to you, XOXOX Sandy

Originally Posted by hope4thebest

My P.C. doc is weaning me off neurontin to try a new med in its place (topomax)..
I thought to myself, (sheesh, I can still think...) since I am weaning off the Neurontin maybe I'll try and not take any meds at all and see if I can tolerate it...
But, then I wonder if this could cause spread!
Has anyone tried Topomax?

To med or not to med...that is the question
Cold turkey or brain fog??

Hugs from Hope4thebest

[Imahotep]

I weaned myself off gabapentin and wasn't on any medication for a couple years. There was a steady but minor improvement in symptoms during this time and I was getting back a lot of usage of the hand before I was reinjured and the condition greatly worsened in the next few months.