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Old 10-25-2006, 01:51 AM #11
beth beth is offline
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Claudia,

Many meds do take 2-4 weeks for your body to become used to, then the drowsy sx tend to be less noticible. I've been on Lyrica since late June and can't say that it does or doesn't make me drowsy, as I am on several meds that have a sedating effect in addition to overall fatigue from full-body RSD. Each of us reacts differently to meds, so I don't know if you would still have unacceptable drowsiness after a longer trial period, but if you can possibly do so, a trial of at least 3 weeks would allow your body to adjust to the med and allow you to better evaluate the drug's effectiveness as it often takes that long for it to build up to maximal level in the body.

I completely understand not wanting to fall again though! The thought terrifies me, what with having osteoporosis and thoracic outlet syndrome as well as RSD. I have plenty of pain already,don't need more or broken bones, and due to the RSD really need to avoid surgery as it can and has made my condition much worse.

Yet Lyrica (and Neurontin previously) helps reduce the burning, shooting nerve pain better than any other med I've tried - and that's quite a few. I tried increasing my dose to 150 mg 2x day at my Dr's suggestion though and soon started seeing the same bladder/urinary sx I experienced w/Neurontin(w/ Neurontin I eventually developed blood in the urine, although it took several weeks and tests to determine this med was the reason). I have gone back down to 100 mg 2x day and the problems vanished, I'll stay at this dose until I see the Dr and find out what he wants me to do. I am definitely concerned that over time perhaps the same effects will occur at the lower dosage, but I don't want to give up this bit of relief if it isn't necessary. So my Catch-22 continues

All any of us can do - ask the Dr, ask the pharmacist, research, weigh the benefits vs. the risks.....then make a decision we can live with and pray it's the right one, while we wait for something better to come along.

I am scheduled to have a SCS surgery Nov 3rd. The psych visit was not a big ordeal except for the written tests. If your arms or wrists bother you at all, try to break this up into 2 days or at least with a lunch break. There were hundreds of questions to be answered by filling in the circle with a #2 pencil - took me hours as it is hard to grasp and press down with a pencil for long. My hand was all red, swollen and very shaky when I finally finished, never again! But the SCS trial was amazing, pain was MUCH lower, slept like a baby 3 nights straight and felt almost myself, had lots of energy, could do so much more! I pray the surgery is a success, as the leads moved the last day, Dr will attempt to place them differently so there is less chance of this happening after implant. PM me if you have any questions, will be glad to answer if I can. Advanced Bionics is the SCS unit I will get, very impressed with the unit and the company rep.

beth
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Old 10-25-2006, 01:19 PM #12
claudia029 claudia029 is offline
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Beth

My neurosurgeon only gave me 40 Tramadols and 10 Liboderm patches. I took a Tramadol when I went to bed last night. Helped me sleep, but still woke up with nerve pain in my left leg. Will be putting on a patch in a few minutes.

I guess my NS is determined for me to try the SCS as I received a packet in the mail today with info and a CD. The information is for a ANS SCS which has a rechargeable battery and should last about 9 years.

I'm not even going to luck at the paperwork until we get back from our cruise. Have to drive to Little Rock airport (85 miles) tomorrow afternoon to pick up hubby's mom as she is going to house and furkid sit while we are gone on our cruise.

Will check back on 11/8 to see how you are doing with your SCS.

Hugs To Ya!
Claudia
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Old 10-25-2006, 09:58 PM #13
agnuscrucis agnuscrucis is offline
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Default they could be real generous - if you give them a chance

actually this is an OT and might sound stupid, but just a note about insurance matters. since i know some people who never thought of it. For some years I had no insurance. And since I didn't have any source of income I was qualified for Free Care, and since it's a big hospital, my hospital covered everything, except any fancy drugs - but if you know my medical expenses, you would understand why i was very satisfied with the ones they do cover. I didn't have to pay a penny for all the expensive procedures. So as my friend put it, if you're sick, Massachusetts is the best place for you.

i'm digressing. When I was without insurance, I always told my doctors (every single one of them) that i was without insurance right in the first visit. Actually one of them was such a jerk, threated me that all the drugs he's going to prescirbe were very expensive. he must just had a bad day, because by the second visit, he was kind and more sensitive to talk about cost, and by the third visits on, he became the sweetest guy I've ever met. He even told me to call the office whenever I finish the samples he gave, and he told the nurse to give me all the samples I needed. Everybody in his office was so glad to help, except one. But if you consider the world today, you must wonder why only one who was not happy with it.

And with all the rest of the doctors, every single time I always surprised with how they reacted. If the drugs are not covered with Free Care and the office had the samples, they gave me as much sample as they could - although they're not suppose to do that. So my point is, don't underestimate your doctor's potential for generosity.

p.s. let us know how it goes. I just had a super painful night.. almost go to ER but after 2 hrs in agony, finally the drugs kicked in. haven't had so much pain for a while - well with all the drugs.. i shouldn't be!

Last edited by agnuscrucis; 10-25-2006 at 10:04 PM.
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Old 11-02-2006, 09:06 PM #14
Joanne Turner Joanne Turner is offline
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Default blue about weight

I had 6 reoccurrances of encephalitis which did major damage to the "pain center" of my brain. Without narcotics life is unbearable. However with the implantation of an intrathecal pump with Dilaudid, I finally had a life. But until Lyrica, my neuropathic pain was still a major problem. But it cleared up excruciating dystonia, and even though I still have a lot of pain, I am able to lead a nearly normal life which is new to me in the past 27 years. I'm driving, doing shopping and enjoying my family. So as I write this, I am realizing that the pettiness of how I look isn't so much to lose.

I had been a size 20 from steroid treatments, and now I'm creeping back up, losing my figure and going up from a size 8 to a 12 in just a couple of months. I know what it's like when it is hard to move around because of excess weight. I never wanted that again. But here I go again. Do any others of you struggle with some of the same feelings? My family says if it was them, they'd go with the extra weight. Me too. But then the vanity bug gets me again.

Can anyone relate?
Joanne:
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Old 11-05-2006, 10:29 PM #15
agnuscrucis agnuscrucis is offline
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quiet definitely.. A friend of mine yesterday even told me that i gain so much weight since he met me the first time. It's been so frustrating because I only have 2 pants that still fit, and my shirts too.. I have to get a set of new cloths for the winter.. because almost none fit me anymore. My father keep talking about how I could loose some weight. I really want to.. but it's so hard because reason #1, reason #2, reason #3,...bla..bla..bla..
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Old 11-06-2006, 01:45 PM #16
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Oh My I jsut saw this thread and i have to say I agree completley. I also was on Lyrica along with cymbalta and nortritlyne and methadone. along with getting a number of trigger point injections with small doses of steroids in each one and Epidural steroid injections. and i have gained alot of weight. I was a size 6-8 and now size 18-20 in less than a year. I can not believe it. and it causes alot more pain because of the weight on my joints. and my spine as well. I am off now and not taking anymore injections so hopefully the weight will come off. probably not as fast but hopefully with time it will go away.

thanks for sharing your stories,we all learn aloot from each others experiences.

sharon
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Old 11-11-2006, 01:58 AM #17
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Default Can you enlighten?

Quote:
Originally Posted by mrsd View Post
I just saw this thread and want to warn you to continue to have your
doctor do liver tests for you.

Cymbalta has a warning letter sent to physicians regarding liver toxicity, and
mixed with Depakote. Just to be safe!
http://www.medscape.com/viewarticle/514768
I was told this week my liver enzymes are in the 60's per a blood test this week. I was told to come back in 2 wks to have blood rechecked.
Does this mean I need to get of Neurontin generic version?
I was seeking info and was told there are several blood test for the liver. Is one more vital than the other?
I want to get off this med because of the side effects I keep reading about. It has helped my deal with the pain of MP and my stenosis in the back but I do not want to ruin my liver. It also appears to effect your memory or more.
If you can offer any insight or refernce material I would appreciated it.
Thanks
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Old 11-11-2006, 11:56 AM #18
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Lightbulb Dear Lookingup...

Gabapentin does not affect the liver. It is not metabolized.

What other drugs are you taking? Sometimes a simple viral thing can elevate
liver enzymes. This usually resolves with time.

Are you taking alot of Tylenol ? That will do it too.

Was that 60 for the ALT?

here is an explanation for some of the tests:
http://en.wikipedia.org/wiki/Liver_function_tests
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Old 11-11-2006, 11:43 PM #19
Joanne Turner Joanne Turner is offline
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Wink Spinal cord stimulator

Hi Claudia:

I just wanted to give you thumbs up for the stimulator. I have the intrathecal pump but know of a lot of people who have had great success with the stimulator. I don't know where I would be without my pump. I am on a tiny fraction of the amount of meds I was on before getting it inserted and believe it is a gift from God. I was bed and wheelchair bound and basically had no life.

As far as the weightgain issue with Lyrica, I found out I have heart failure - not from the Lyrica, but because my mitral valve repair caused it. I gained 40pounds in four weeks - not from the Lyrica, but from problems in my valve. My cardiologist who is very good didn't even consider the Lyrica as a cause. So while I may have gained some weight from Lyrica, it isn't 40 pounds that quickly. I learned to control my diet when narcotics caused me to back up so badly it was enemas every few days. I look at every carbohydrate as glue, and weight is not a problem. I think I will do the same with Lyrica and see if I can't control the issue a bit.

Since I began addressing the heart failure, my energy has returned, my figure is returning and I feel like the Lyrica is giving me the pain relief I originally had at 300 mg. So maybe the problem with your weight isn't the Lyrica after all but some other medical problem. Just something to think about. Just from experience, it's worth looking into.
Joanne
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Old 11-12-2006, 12:38 AM #20
lookingup58 lookingup58 is offline
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Question

Quote:
Originally Posted by mrsd View Post
Gabapentin does not affect the liver. It is not metabolized.

What other drugs are you taking? Sometimes a simple viral thing can elevate
liver enzymes. This usually resolves with time.

Are you taking alot of Tylenol ? That will do it too.

Was that 60 for the ALT?

here is an explanation for some of the tests:
http://en.wikipedia.org/wiki/Liver_function_tests
Glad to hear it is not the Gabapentin. I take mostly vits and naturals. I do take Nexium and Refalen could it be those? If you want I can pm you if it is not one of these. (I just bought a book on the interactions of naturals, herbs and meds.) I do not take Tylenol. I do not know which liver test it was for I am going to call the dr. office Monday to find out. (I thought it was one test before I learned there are several)
Thanks for you info. I will look up the site ou listes above.
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