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:( I finally have been assigned my new medicaid doctor. Here starts my sade tale of woe. I was diagnosed with central pain and given the reasoning to the diagnosis and I absolutly meet all the criteria so I agree Central pain is my enemy. My old family physician worked with me as far as prescribing the necessary medication so I would not take leave of my senses completely and go mad. He had me on a pain med then he felt necessary to change that it was not as effective but it was somewhat effective so I was not going to make an issue of if. Now that I have been assigned to my new primary care doctor the first visit he cut my pain med by a third of what it was. On the second visit when he determined I had no withdrawl he cut it yet again. I now have 1/2 tablet or 1/3 of what it was 2 weeks ago. Still no withdrawl. I am however in enough pain that my functionig is in question . When he did this taking me off the hydrocodone he put me on Nurontin or gabpentin. Immediately I had little tremors and things like the world going tilt. But each time I took another one and it started to add up in my system I was a bit more off kilter and the tremors were more pronounced. He told me not to worry everything was just an adjustment. He doubled the amount of Nurontin and now I am wondering as it is affecting me like I have parkinsono or something. Not to mention the unsureness As I try to wal with the cane my step is all over the place and I fallen and come really close to falling a number of time I cant even sleem for that trembling feeling My pain level is conservatively at an 8 ok nine but I dont like to use nine unless its a surgical pain level. Does anyone know anything about nurontin or gabpentin and can some one please tell me why it is when you have REAL PAIN they are so reticent to give us the pain control we need? I am near 60 and I am not a drug seeker not one to consider as a source if they wished to buy a few. I dont get it and how do I relay that to my doctor who is way over board on not prescribing a necessary medication. Karen
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oh kareni am so sorry for your diognoses, but i don"t have central pain problem , but what i can tell you that i hope will help is that when i was on luvox an anti depresant medication , i did not react well to the drug , i got very toned i was shaking all of the time and then my doctor told me the same thing , that the drug need a minor adjustment to find the right amout of dosage and then once he found it it was great karin, so it is true some time the doctor has to find the right dosage for you, and until they do your body is just letting you know that that is not right, so just put faith in your doctor karin, and i know that you heard it before but just relax about it and put your mind of ease as you know to munch stress is no good for you or your recovery so just keep positive and know that your doctor is doing the best that he canjust always let the doctor know what is going on when you take this drug so he will know to readjusted the dosage , well i hope that this is helpful to you and i wish that there weas som,e thing that i coud do for you , but all i can do is offer my experiance with the same thing , all the best to you karen i wish you nothing but the very best in your journey of recovery

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Oh Karen,

 

I am so very, very, sorry for your predicament that your are in. I wish I had an answer for your questions about the doctors. But I have a couple of questions for you. First, the tremors are VERY common from Neurontin. This is why I had to come off of it when I had my second stroke 10 yesrs ago when it was given to me for my pain. It drove me up a WALL!!! Frist question--Is this new doc board certified as a pain specialist? or is he/she just acting as your new primary care doctor? If they are "only" your PCP, then you need to ask to see a Board Certified Pain Control Specialist. They are not "afraid" to treat the pain as is a Primary Care doc or Neurologist, even if the Neurologist adveristes that they "specialize in Pain management" you'll only get more of what you've had. Believe me, that's what I've gone through the last 20 years.

 

They may balk, but even as a Medicaid patient you have rights to proper care. I forgot to look where you live before I began to write, but many times a Pain Specialist are located at major medical centers, but in larger cities and towns there are more specialists opening practices in freestanding offices because, despite what most of us encounter, the medical community is realizing that pain has not been managed and is under treated and under medicated in most patients. I have some web sites that may help you find a doctor or practice in your area but I need to go loot them up, but I remember that Neurontin feeling as if it were yesterday - - you feel as if you are loosing your mind-- and I wanted to try to reassure you that it is the drug first.

 

CALL YOUR DOCTOR and don't take no for an answer, when you tell him that it's driving you nuts. Tell him you must have a lower dose. If you have to, read the side effects from the patient information sheet you should have gotten from the pharmacy when you filled the prescription. If you didn't get one, go to www.epocrates.com and sign up for the free side of the account. Every MD uses this in their practice. My own doctor gave me the web site for me to look up side effects of drugs. There is a section that you can even enter all of your meds to look for interactions between all your meds.

 

This is a great site for everyone out there !!

 

I'll hush now and go look up those web sites for pain docs. Take good care and be well.

 

Susan

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Guest bkahlbaugh

Hi Karen:

 

I do not have any answers for you on the CPS. All i can offer is to tell you

i am sorry you are going through all of this and my thoughts and prayers are with you

as you work it through. i hope that doc. or another one will help you find relief.

please hang in there i am sure a lot of folks here are pulling for you in prayer.

 

In Friendship

Brian

 

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Oh Karen,

 

I am so very, very, sorry for your predicament that your are in. I wish I had an answer for your questions about the doctors. But I have a couple of questions for you. First, the tremors are VERY common from Neurontin. This is why I had to come off of it when I had my second stroke 10 yesrs ago when it was given to me for my pain. It drove me up a WALL!!! Frist question--Is this new doc board certified as a pain specialist? or is he/she just acting as your new primary care doctor? If they are "only" your PCP, then you need to ask to see a Board Certified Pain Control Specialist. They are not "afraid" to treat the pain as is a Primary Care doc or Neurologist, even if the Neurologist adveristes that they "specialize in Pain management" you'll only get more of what you've had. Believe me, that's what I've gone through the last 20 years.

 

They may balk, but even as a Medicaid patient you have rights to proper care. I forgot to look where you live before I began to write, but many times a Pain Specialist are located at major medical centers, but in larger cities and towns there are more specialists opening practices in freestanding offices because, despite what most of us encounter, the medical community is realizing that pain has not been managed and is under treated and under medicated in most patients. I have some web sites that may help you find a doctor or practice in your area but I need to go loot them up, but I remember that Neurontin feeling as if it were yesterday - - you feel as if you are loosing your mind-- and I wanted to try to reassure you that it is the drug first.

 

CALL YOUR DOCTOR and don't take no for an answer, when you tell him that it's driving you nuts. Tell him you must have a lower dose. If you have to, read the side effects from the patient information sheet you should have gotten from the pharmacy when you filled the prescription. If you didn't get one, go to www.epocrates.com and sign up for the free side of the account. Every MD uses this in their practice. My own doctor gave me the web site for me to look up side effects of drugs. There is a section that you can even enter all of your meds to look for interactions between all your meds.

 

This is a great site for everyone out there !!

 

I'll hush now and go look up those web sites for pain docs. Take good care and be well.

 

Susan

 

 

This doctor is not a board certified pain specialist he is to be my new primary care. One thing I have noted as well is when I get my prescriptions filled it is not his name on the prescription but another Drs. So I am really questioning how does this all work? Thanks Susan My husband said he has noted my difficulty with things and he is going to either get the doctor straight or request a different doctor. Thank heavens I will also look all this up and we will be prepared. Hugs Karen

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awww karen, i feel so badly that you are dealing with this on top of other issues. this dr of yours needs to have his head examined as far as i am concerned. he doesnt really know you like your pcp did. cps is a terrible side effect of a stroke. you need someone to listen to you and your pain threshold. give you a med that works and will help you. dr's i think are getting tight on pain meds because of the addiction and overdose rates in the united states. but if he knew you as a person with real pain from a stroke for gods sake. he would know you are not a druggie. i think you need a different dr for sure, like a pain specialist maybe. or a good stroke neurologist. i wouldn't take the med anymore, it certainly isnt helping you adding tremors to your life. please let us know what you find out about the dr's. you are in my thoughts and prayers to get you through this. rough time. sending many (((((((hugs)))))

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Hi Karen, Sending hugs and warm wishes your way. the other thing to look besides Central Pain Syndrome is Thalmic Pain. if you can print out a couple articles take them to this idiot... I don't think he has a clue about CPS... Tell him You want a referal to a pain Dr.

 

hugs, Bonnie

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Karen,

 

This may help to give you a bit more info into CPS than the doctor you saw did:

 

http://www.painclinic.org/nervepain-centra...tstrokepain.htm

 

Everyone is right. You really do need to see a pain management specialist who is familiar with this and specializes in treating it and stroke patients.

Try not to get too upset until you get some answers and help from a doctor who really knows what he's doing. In hindsight you'll see it wasn't worth the stress .

 

Keep us updated on how you make out.

 

Maria :mwah:

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Hi Karen, Sending hugs and warm wishes your way. the other thing to look besides Central Pain Syndrome is Thalmic Pain. if you can print out a couple articles take them to this idiot... I don't think he has a clue about CPS... Tell him You want a referal to a pain Dr.

 

hugs, Bonnie

 

 

I made an urgent same day appointment and sat there till about 1/2 hour ago when frustrated we spoke to him for about 5 minutes and told that we could discuss this at my next appointment in 2 weeks. So I guess in the meantime I will on my own decrease my neurontion ( that or I might go nuts the pain is unbearable) and I am going to meet him half way on the percoset He will understand that one every 8 hours is already leaveing me in unbelievable pain or he wont understand and I will be lectured about who should do as whome says. Argh.... life is not fun at the moment. Karen

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Hi Karen,

 

I am truly sorry for your pain, and the confusion that these Doctors seem to have (and have you in) regarding the treatment of your pain. I offer my support and pray for relief for you, and vision for your Doctors so that they might see a way to aid in some resolution for you. They really need to figure out how to prescribe the right drugs for your long term pain maintenance, so I hope they will get you in to see a pain specialist real soon!

 

I also want to thank you for your detailed description of your symptoms, and the medication Neurontin that you believe might be responsible for your changes. Coincidentally, I had complaints that I reiterated to my Neurologist back on January 27 about some pain I was still experiencing in the area of my stroke. He thought it was not a sign of any new developments since I had no other symptoms and had been experiencing this pain since around the 6 month mark; roughly corresponding to the resolution of my brain swelling from the stroke. I have also been expressing my desire to be relatively holistic and not take meds for every little thing. So he says as he gives me this Rx for 300mg Neurontin "This drug is a really safe drug. It has virtually no side effects for you to worry about." Oh really now? I brought it up in chat to Kimmie and Bonnie, and I just started getting the vibe like maybe I should give the pain a chance to resolve itself, and let this script lie a minute. (Thanks Gals!) Lucky for me the pain did ease up some, and I had pretty much decided to leave the Rx unfilled, in spite of a few moments where I felt like I needed it.

 

Now I realize that your pain is constant and must be much worse than mine, so I am not suggesting you deny yourself the pain meds; I totally know how I would be seeking out some help myself if my pain had not decreased on it's own. I wish you could be so lucky as well, and that is what I am really hoping and praying for you. In the meantime; Thanks for sharing your story and letting us know the potential side effects of this medication! I have some clonus in my right leg already, that is dissipating with my strength training, and am not volunteering to get more shakes because I have been prescribed the wrong med. You really saved me a lot of potential misery, and for that I am in your debt. I will work it off in the prayers I say for you!

 

All my best,

Walt

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Hey Karen!

 

A for the names on your precription bottles, if the name on the bottle is a name within the same practice as your new "Dr." then what your pharmacy is doing is their computer filling system is automatically pulling out a name from the practice and putting it on your bottle label. To the system, it does not matter what name goes on the bottle, as long as it matches the DEA ID Number for that practice that is in their computer system. So, if this is the case, then I would not worry about anything. It is a very common thing in pharmacies to do this......frustrating, but common. It has happened to me too.

 

I have not forgotten about the pain sties, just have not found them in my concoffeny of info I have between migraines, strokes, and med sites for my daughter's illnesses. Will get them posted asap so everyone can access.

 

You are still in my thoughts & Prayers and Remember your rights, this guy asked to be a medicaid doc, so don't sit there and be lectured to. Get Thee to a Pain Specialist!! :) :)

 

Susan

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Karen,

 

Here are those web sites where you can research your neuropathy diagnosis that I told you I had. they may work for you they may not.

 

www.mayclinic.com

 

www.healthywomen.org

 

http://medlineplus.gov This is for the National Institutes of Health

 

www.DukeHealth.org the go to Services and it gives an alpha list of conditions. You can also reaearch their Pain Clinic just to see what one would be like.

 

 

http://my.clevelandclinic.org then go to Health Information

 

http://my.clevelandclinic.org/health/chat this is for their daily chats with their Health Educators from 10AM to 1:30 PM EST

 

I hope these will give you some guides in what you are loooking for

 

Bless you,

Susan

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Hi Karen, Folks....

 

What's happening is that the Feds are looking askance at pain meds, and oxycodone in particular...

 

Percoset is an oxycodone/acetaminophen blend pain med.....It is effective in dealing with moderate to severe pain....It also has a high potential for the development of tolerance, and addiction...

 

So, under pressure, the Docs are trying to find almost any other drug, to use in lieu of oxycodone, for pain relief...Even to the point of off label applications...

 

So...Neurontin (Gabapentin), was developed for control of epilepsy....It has a side effect of relieving pain, especially neuropathic pain....It is not a pain med per se...

 

Karen, if Neurontin doesn't help...the next on the list to often try is Pregabalin (aka Lyrica)....My Doc tried this on me....Again, is an anti seizure drug, but they use for it's side effects...Watch out for that garbage....it works, but a lot of folks get rashes...I did....<G>....! There are others...

 

I'm surprised they haven't tried Hydrocodone (Vicodin)...Maybe at the end, because that's another opiate derivative drug, but not as nasty as Oxycodone...

 

They will likely try others...to get you "off" the bogeyman oxycodone...

 

I guess I am very lucky to have a Doc that will work with me...In another life, you could not get me to touch a pain med or sleep med with a 10 foot pole...My Doc knew me then, too....Between a broken collarbone and the resultant surgeries (2 of them), and the Stroke (07, end of), my philosophy changed....

 

I developed a habit of researching every med that was proposed for my use...So I knew what the hell was likely to be going on...

There is plenty of info on the InterNet...Actually, I considered that a must on my part, so I could work with my Doc(s)....

 

In all fairness to your Doc, Karen...If he's had to deal with pain pill junkies, he's heard every story in the book...in attempts to get scripts...

It can jade a Doc's attitude....As I said...the Feds are looking askance at the meds, particularly Oxycodone...

 

These days...when a pharmacy is robbed, the bad guys ignore the cash...The get the Percs, the straight Oxycodones, and the Oxycontins (Time Release)....A bottle of 500 20mg Oxtcontin is worth $5000 or more on the street...Why screw around with a couple of hundred from the register...

 

Hope that clears up what's going on....?

 

Care...

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:rolleyes: You've had so many good replies I can't add anything more benificial but suggest you take up the advice about cert qualified painconsulant Alway look up your drug on the net most important to find out actions and interactions I've nearly got cought a couple of times good luck in you qest for pain relief

HOSTGED :rolleyes:

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  • 2 months later...

I am sorry about your situation, Karen. I take Gabapentin (Neurontin) - 300 mg. 4 times a day. I was prescribed this in hopes of controlling my vertigo attacks. Apparently, I developed a tolerance (or the condition developed a tolerance) and had vertigo attacks again. My neurologist did not take me off of Gabapentin, I guess, because he probably thought it was also benefiting my depression. He put me on other meds that did not do the trick. Several meds later and more vertigo attacks, I am now on Atarax (Hydroxyzine). It's not really doing the trick. I am seeing another neurologist in the hopes that I can get help with my vertigo attacks, as it has changed in a strange way.

 

You need a doc that specializes in pain management. I hope you can get this sorted out. I'd be changing my doc to get a better treatment.

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Dear Karen,

 

I fully understand and appreciate your situation, with sadness you have to "tolerate" the current circumstances. You have received some very good insight and guidance on this thread. I will not share my personal experiences and details regarding my pain and associated meds because this is about "YOU!"

 

I like your husband's attitude and you are quickly moving in the same direction. The key to dealing with the medical community and doctors is simply this, YOU must be your own best health advocate. What does this mean? When you get that gut feeling your doctor is not listening to you, appreciating your situation in both a medical service and person-to-person stand point, it's time to stand up and kick some butt. Doctors are responsible for providing YOU a medical service at the highest possible level. They are not doing us a favor by seeing us and "treating" us. Actually Karen, the doctor works for you and there should be a comfortable relationship of trust, confidence and respect. Do not hesitate to exercise your right to make him understand to YOUR satisfaction. If you don't, nobody else will.

 

My distinct impression from what you have shared is this PCP doesn't get it regarding your pain and appears to be treating the possible addictiveness to your other meds at the expense of treating your pain. As pointed out by others, a PCP is not a pain specialist thus their knowledge and resources are limited. This does you no good if the PCP doesn't realize this and refer you to a qualified, board certified, pain management specialist.

 

Both you and your husband confront him directly and together regarding this subject and do not be intimidated by the fact he is a "doctor," as we were reared to almost place them on an unquestionable pedestal. That is all crocodile cr*p so take it personal and make it personal with your husband standing there in the same room with you.

 

I apologize in that I am sharing not what you may want to hear, rather, what you should hear. Should you like to discuss this in further detail and ask me whatever you would like regarding my route to this attitude and direction, I am happy to listen and provide whatever assistance I may by PM, email, or even telephone, at your convenience. Please take what I share for what it is worth to YOU and if you find no worth, simply totally disregard my post. Either way, you are in my thoughts and prayers as this is not an easy journey we are on.

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Hi Karen. Sorry you are suffering. I had a doc who was so against any type of meds, he let me suffer. In this day and age, we dont need to suffer like that. I changed doctors and everything was good again. My new doctor didnt believe a doc could leave me in pain like that. Good luck. I hope you find a doc that will help you.

 

mc

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My mom had her stroke in 1992 she is 70 yrs old today. Left side brain so she had paralysis on the right side. She never used her right arm and hand again. Since 2005 she has been on Hydrocodone (Vicodin)and now takes 6 Lortab® 10/500 per day. This is through a pain management doctor and my mom has Medicare/Medicaid. Your pain problems sound exactly like the problems we have been dealing with. I have tried everything including Fentanyl patch's, morphine, Lyrica, Cymbalta, Neurontin and more. 2 years ago they had her on the full Neurontin prescription and she had a small seizure. That day I eliminated the extra Neurontin and now she just takes 800 mg for sleep at night. Be careful with the Neurontin. It made her goofy and the seizure really scared me. My mom also tried physical therapy and the Tens machine. I continuously keep looking for something that will help because for us our normal schedule is a once a month appt. with the Pain Management doctor and we sit there and answer the same questions over and over again now for 5 years. I understand why they do this but I tell you as a caregiver it can get stressful for me when the Vicodin pills get low. Anyway.. You need to find a Pain Management Doctor. My moms regular doctor will write a prescription for a week but that is it. He referred her to the pain mgt doctor. I find it strange your doctor does not refer you. My mom is happy with one pill of 800mg neurontin at night and 6 to 7 pills per day Lortab® 10/500 (vicodin) although she is only allowed 6 per day. I am still looking for alternatives because it can get stressful when she runs low and if she takes more than she is suppose to I have to beg if we are 1 day short. I do get concerned with the level of Acetaminophen so I think I would like her to try the NORCO 10/325 which is only 325 mg of Acetaminophen. I will let you know if it works.

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  • 2 weeks later...

Hi karen

I know you how you feel . I two suffer central pain syndrome and am 15 years stroke survivor.I am sorry for you pain. I find no help from pain meds. alan

 

 

Allan I am minute by minute working through this but if this continues and I am quite certain it will I am going to ask to either be on a pump or increase the dosage to something of assistance Great to have you back with us Allan Hugs Karen

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Hi Karen!

 

It's Susan....Again! Everything everyone has said has been wonderful advice but, again, the neurontin does indeed cause some quite nasty side effects including tremmors, the making you feel goofy and possibly seizures. Thst goes for the entire family of drugs to which it belongs, which if a doc tries neurontin and rejects it will try something similar in the same family. The Drug diversion which Le Hermite talked about is true, but has been going on for years and years. I was a Pharmaceutical Rep in the 80's and it was a problem then. In fact, my Boss caused drug diversion of codeine/methadone cough syrup from me every time he worked with me (he took samples from me at every visit mand made me change the count----I kept an accounting of what he had done every time he'd done it)and then threatened me with my work performance every time he was there. You may think it's only cough syrup, but the FDA lives and breathes by their paperwork from their respective Pharmeceutical Companies amd then how a new drug gets to trial and goes through the approval process through the FDA to get approved. OK, I'm off my soapbox. There are very tight measures in place, yes, they can be broken through, just like anything, but they are there.

 

You STILL need to get to a Pain Specialist that knows how to treat pain. That's what I have gotten to and she finally diagnosed my pain as peripheral neurophy. She gives me Vicodin 5/500 every 6 hours and M.S. Contin 15mg 3 times a day. I have had the MS Contin as much as 30 mg 3 times a day but Dr. thinks this serves me well and for now she's right. I am also using a lidocaine patch called "Lidoderm". It's not a huge panacea but it helps. It's originally diagnosed for shingles, but my doctor will use it "off-label" for pain.

 

I hope this little bit has helped , my friend. Feel better and take care.

 

Susan

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Karen, Hi, I am so sorry you are in pain and cant get relief. I had a doctor for a while who would not prescribe what I needed. He was anti-meds. I got no relief until I changed doctors who thought it was not necessary in this day and age to let patients suffer unnecessarily. Maybe you need to get another doctor. Will medicaid assign another for you. I hope so for your sake, Good luck with that Karen,

 

mc

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