Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-25-2007, 08:29 AM #11
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Quote:
Originally Posted by Joselita View Post


Where I have gotten confused is at a couple of different places here. The first thing that hit me was; Why so defensive and almost aggressive towards Artists post/question? I looked and looked, and I don't see where she uses the word "liar" or "lie" or anything like that. All I see is her asking for where you found the info about the Neurontin staying in the system for 3 years after it has stopped being taken. It looks like she was being very careful about asking this too. So..I am not sure that I understand why you got so upset? Or, at least why your post sounded so upset?

Next thing that confused me, was all of those other posts that you put up in your response. But, in none of the things that you put up here, do I see anyone saying anything about the 3 years thing? So, I am confused? Why all of those other things by other people?

But, if it is super important info like a med staying in the system for years at a time...well....that kind of thing kinda needs to have something that folks can go to, to read about it for themselves too. If that makes any sense?

I understand that you have picked up lots of information along the way, while trying to help your husband figure out what would be the best route for him to go, as far as treatments and meds. I understand that LOTS of research has been done in order for you to try to do that to the best of your ability. But, just like any other research, it kinda needs Cites to help back it up. Otherwise what can happen are some very NOT GOOD things. For example, folks can panic and either refuse to take a med that might very well work for them without really having all of the information that they need to make that kind of decision, or they can stop taking a med out of fear of whatever possibly happening to them(even if they aren't having side effects, or not bad ones, and the med IS helping them), or there can be a HUGE big argument pop up on here between the folks that a certain med or treatment helps, and those that it does not. Believe me, I have seen that happen more times then I like to think about. It is awful, and I dont like seeing all of the folks that I care about feeling all weirded out unnecessarily, especially since there is so very much for us all to be weirded out by on a daily basis living with RSD.

Take Care,
Joselita
Good Morning,

Why was I upset? Why did I post what I posted? To show that people have had reactions/adverse effects etc for years after quitting Neurontin.......As also stated, through my research over 12 years and the onset of hubby's RSD I have lost the link to the "EXACT" 3 year mark and I've told Artist that - I'm still looking in between caring for my husband, children, working and recently/now caring for/visiting a grandmother is dying...So I'd like to say "pardon" to all who want/insist on seeing the exact three year detailed information. I'll post it as soon as I can locate it.

.

No offense taken to your response.....I dont have a problem with it at all. I will state, tho that in previous posts I believe I have explained that my father in law has taken and has been successful with taking Neurontin (so far) I have NEVER stated that one stop taking it or reject it because of what my opinions are about it. I believe I have shared that same thing, that what works for one may not work for others. I also believe that people should be warned about possible LONG LASTING side effects, reactions. I've said many times, research, research and research some more about what meds you are on or what you could be on. Visiting one site about a product does not guarentee or give anyone the educated information they need about a med. As a matter of a fact, I just found more side effects/possible side effects listed about a med hubby is on, and he's been taking this for 6 months. I was unaware of them, AND another med hubby had tried and ended up in the ER for - the side effects he experienced were no where listed on the net (I still have yet to find them), NOR on the package/information sheet, OR at the companies direct website YET the Dr in the ER had them listed with HIS information - (Information released to him apparently but not to the public.....) - Making informed decisions is important. I couldnt agree with you more.

So to make this story short in between everything else in my life when and if I come up with the "exact three year" mark, posting, site (as I read this 12 years ago) I'll make sure this is the first place I stop by and post it.

Hope your day is good,

HWRSD

Last edited by Chemar; 04-27-2007 at 07:30 AM. Reason: moderator edit required
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Old 04-25-2007, 02:09 PM #12
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ok...i'm stepping in here now.

let's keep things civil an on topic.

what has been asked is for facts to back up the information. such as medical data from a creditable source.

peoples beliefs or their personal experience are fine, but that must be clarified when posting.
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Old 04-27-2007, 06:50 AM #13
InHisHands InHisHands is offline
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Originally Posted by artist View Post
Hi IHH,

Sorry you're not doing so well these days - I don't know the answer, sounds very unusual to be taking two types of gabapentin though - but it rings some kind of bell - I'll wrack my brains!

Yes there are a few threads on both Neurontin and Lyrica, you're a good searcher, IHH I know you've probably found them already LOL.

IHH, I'll dig up what I can, not got too much time though at the moment
Please take care,
all the best
Thanks, Artist. You are so sweet! Yes, I've been having an awful time... I explained a bunch in the Ihh thread started by dear Frogga.

Whenever you find that info- I'd LOVE it. Thanks.


Quote:
Originally Posted by Cake View Post
I think if you're lowering your N dose and starting L then its not so bad, but I'm sure being on both together isn't wise, due to seretonin levels.

The best way to check for sure is to use the drug interaction checker on www.drugs.com Type both in then search for interactions and it will tell you whether there are mild/moderate/severe issues with taking both at once. Of course this comes with a disclaimer and if you aren't sure you should get your doctor to check, but it'll give you an idea on what problems may arise with taking both at once at normal doses (ie not coming down off one while introducing the other)

x Kate
Thank you very much, Kate! I am going to look into the seretonin level thing... thanks for mentioning in to me.



Right now I'm at 2700 mg of Neurontin, and atm I am at 250 mg of Lyrica (but it's being increased every few days).

The Neurontin I, at first wondered if it was helping, but when I had the flu not too long ago I couldn't take it, and then I realized how much it was helping, especially with the burning pain, tingling and allodynia.

I have already seen benefit with the Lyrica- the burning pain, tingling and numbness has decreased dramatically.

My Dr. is planning on keeping me on both. She doesn't want to increase the Neurontin much more, and since Lyrica is close to Neurontin, and I've seen benefit from it, she decided Lyrica would be a good choice for me. I am not too worried about taking them both at once, my Dr. explained it all to me in depth, and she is very cautious with meds and does not want me on any needlessly- she wants to get me comfortable and functional enough with a few, and not just snow me in with a bunch.

Thanks again for all the input!
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Old 04-27-2007, 07:16 AM #14
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Hi IHH,

So sorry you've been under the weather; finally the penny dropped, or the bell rang....Debby takes both together, it was staring me in the face:
http://neurotalk.psychcentral.com/sh...3336#post63336

Sounds like you're happy with both, that's very interesting...how did she explain it? Just curious LOL - I haven't read your other post yet, so if you've already covered it, ignore me!!

So good to see you back here,
all the best
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Old 04-27-2007, 07:26 AM #15
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artist...i'm curious

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Old 04-27-2007, 07:29 AM #16
InHisHands InHisHands is offline
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artist...i'm curious

LOL! You just made me crack up!!!!!!
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Old 04-27-2007, 07:31 AM #17
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ihh

laughter is the best medicine. that and the choccy bribes i get from artist.

<---hands ihh a towel to wipe coffee off the her monitor.
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Old 04-27-2007, 07:49 AM #18
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Artist,

Well... my RSD is primarily "sensory", and then "vasomotor", "and I think "sudomotor/ edema" and "motor/ trophic" tie...

Both Neurontin and Lyrica are good choices for significant allodynia/ hyperalgesia. Anticonvulsants and/ or other sodium channel blockers and/ or NMDA-receptor antagonists are all good choices (see the "pharmacotherapy guide" from the RSDSA "Pharmacotherapy" article).

Since I have significant allodynia/ hyperalgesia my Dr. feels that both of these are very helpful. She thinks that if they are helpful (they are) with the burning pain, tingling and sensitivity overall then I will be able to be more functional.

In addition to increasing the Lyrica, I am working on "touching, moving, using" for desensitization and both together should be helpful.

I also do not deal with the weight gain, sleepy/ sluggishness, etc from either Neurontin or Lyrica, so they are good choices for me for that reason.

As you know, Neurontin and Lyrica are both used for nerve generated pain. I describe my pain consistant to nerve pain: "burning", "shooting" and "tingling". I also describe it as "stabbing" quite frequently.

Using Lyrica for RSD is off-label use. It was not "made" for use of treating neuropathic pain. But, it has been shown to work.

My Dr. said that using Lyrica would be a problem if I was planning on becoming pregnant... I told her not to worry- I am not planning on that. -grin-

Overall my Dr. and I discussed the options and we decided it seemed like a very good choice for me. I am glad I started it!

Oh- and my Dr. thinks it might help somewhat with the headaches the RSD has caused.

Most of what we discussed about it was how it would help me personally, taking into acount my primary RSD symptoms, age, etc...

Sending my love!

Last edited by InHisHands; 04-27-2007 at 11:28 AM. Reason: always something... my grammar this time...
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Old 04-27-2007, 07:51 AM #19
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Originally Posted by Curious View Post
ihh

laughter is the best medicine. that and the choccy bribes i get from artist.

<---hands ihh a towel to wipe coffee off the her monitor.
Yeah! And I hear that laughter is known to build up endorphines- needed for your body's own natural pain relief! So it is the "best medicine"- I need more endorphines to get some nice pain relief- should I laugh a TON? Would it help, do you think?!

I'll keep laughing!

You are funny! Can I have chocolate, too??? I LOVE the milk chocolate... I am fond of Milkways... please?!
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Old 04-27-2007, 07:58 AM #20
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will brownies be ok? Attachment 1070
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Last edited by Curious; 08-29-2007 at 04:28 PM.
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