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11-01-2015, 04:25 PM | #1 | ||
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Hi,
I have always been very sensitive to medicine and had the worst night of my life last night on only my second night of taking Cymbalta (30) .....there only seems to be a handful of these drugs so what I would like to know is how many of you are sensitive to the med's and what did you do to overcome this issue. In the past I have overcome 2 spinal fusion operations and several other surgeries so I'm no stranger to pain, however this SFN is much worse than anything I have ever encountered. I'm stuck in a very bad spot because without the med's how can I find a way to function? The neuro doc told me the drugs are very well tolerated and acted as If I was an exception to the rule. Cliffman |
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11-02-2015, 09:00 AM | #2 | ||
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My neuro said the same thing about the "Big 3" meds for neuropathy. Well tolerated. That is basically because they figure the neuro pain is so bad the side effects of these medicines are preferable. I was also told I was an exception and was hypersensitive to medicine. Cymbalta burned my stomach and throat like 10 pounds of mexican food. It then also made me LITERALLY want to commit suicide. I lasted 1 day on it. I was on Lyrica for about 2 weeks. I just felt, stiff, and zombie like. My wife told me a was a different person. Not in a bad way just that i was emotionless, apathetic and a bit melancholic. I can say it did help with the pain somewhat but not enough to warrant staying on it. Gabapentin is the most tolerable for me. I tend to do better with old drugs rather than the newer formulations. I took some time to get used to but the only real burdensome side effect for me has been a loss in visual acuity. I by no means can't see but I feel like i cant focus on things far away like i used to. The dizziness, and sleepiness kind of went away after a while. problem is the drug has a poor half life. it takes a while to get into your system after taking it and then when its finally at its peak maybe gives you 2-3 hours of moderate relief. So, you have to time it out. Alos, its a drug they they don't know exactly how or why it works for so many conditions. Which can be unsettling if you worry about long term effects. Consider dietary and lifestyle changes as well as topical creams (Topricin, Aspercreme with lidocane 4%). Remove processed foods, sugars, starches - especially nightshade vegetables. Look into many of the supplements mentioned here. If you really still wanna consider medicine look into a new neuro and look to start in very small doses and titre up. Even gabapentin can be taken in as little at 100 mg doses to start and at that dose it is not gonna do much, especially at bedtime. Everyone's different. But, a good neuro will keep trying to alleviate pain for you.
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Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced) • R-Lipoic Acid: 100mg - 300mg Daily • Acetyl-L Carnitine: 1500mg Daily • Vitamin B12: 1000 mcg Daily • Magnesium 500mg Daily • Grape Seed Extract 200mg Daily • Benfotiamine 300mg daily |
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11-02-2015, 09:28 AM | #3 | |||
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You are NOT the exception to the rule. I am also very sensitive to medication, to a ridiculous extent. I was on Neurontin for several yrs and it covered my neuropathy well but as I increased dosage, I found I was overly emotional and rather hard to live with. ( Even worse then my normal personality!) Then my doc put me on Lyrica. He clearly stated not to drive or make any big decisions and to take it easy for 2-3 weeks until accommodated to the side effects. The side effects were feeling like I was walking on a boat in a storm and I felt dizzy and spacey. When I called the doc and said I wanted to stop, he said, please try to stick it out another week because you need help for your neuropathy and we don't have a lot of options left. I did ride out the side effects and they did go away. I have decent coverage for neuropathy and it has been like 7-8 yrs. My one caution is, I did get off Lyrica twice and it was a wicked withdrawal.....you have to go VERY slowly. I had minor seizures prior to taking Lyrica and when I withdrew, my seizures came back but it is my understanding that even if you never had seizures, you need to withdraw slowly or you may get them. The good news is, Lyrica has helped my neuropathy which is in my right jaw, face, head and down my right arm. It is especially bad in my face and jaw and in the winter, it is very difficult to go out without being well covered. Just riding in a car with the window open can be painful anytime of the year. There are alternatives if you think you can't make it through the Cymbalta. Wishing you the best....I know trying to soften neuropathy is not easy but have patience and educate yourself and keep doing smart things like asking questions to the good folks on these forums. They have all supported me through some tough times. I am certain things will get better for you. My best, Diandra |
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"Thanks for this!" says: | DejaVu (11-09-2015), KnowNothingJon (11-02-2015), Patrick Winter (11-02-2015), St George 2013 (11-02-2015), zkrp01 (11-02-2015) |
11-02-2015, 09:40 AM | #4 | ||
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Junior Member
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Tried them all my ranking
Cymbalta - did not like the side effect which made me any angry person with a short fuse. I'm laid back easy going not that angry person. Gabepetin - was up to 1,800 mg a day did not like the foggy side effect but helped with the pain. Was able to get down to 1,200 mg a day. Lyrica - seemed liked it was working but I got tired of the insurance company dance so went back to Gralise. Gralise - is timed release Gabepentin so you take it once a day before bed. You sleep through the side effects. I don't have the roller coaster of that its almost time for a pill feeling. It took me so long to get this approved I was hesitant to go through it all again for Lyrica, and possibly lose the approval for Gralise. And I agree back pain sucks but I think nueropathy pain is worse. I had L3-4-5 fused 5 months ago.
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My PN is considered Critical Illness Neuropathy. In October 2010 I left for a golf trip not feeling well, woke up in a hospital 21 days later. I was in an induced coma for treatment of Legioneers Disease. First day out of ICU I noticed the pain in my feet and as they say the rest is history. |
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"Thanks for this!" says: | DejaVu (11-09-2015), St George 2013 (11-02-2015) |
11-02-2015, 04:01 PM | #5 | ||
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Thank you Patrick, Diandra & Mike for sharing your experience with the med's.
The Neurologist's attitude is that I'm being difficult when I tell them the drugs are not being what they refer to as "well tolerated" by my body. Cliffman |
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"Thanks for this!" says: | DejaVu (11-09-2015), St George 2013 (11-07-2015) |
11-02-2015, 04:28 PM | #6 | ||
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The majority of neurologists write scripts and order tests. I have been to 5 and they are all the same. My general practitioner has been more responsive and willing to listen than any Neurologist.
__________________
Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced) • R-Lipoic Acid: 100mg - 300mg Daily • Acetyl-L Carnitine: 1500mg Daily • Vitamin B12: 1000 mcg Daily • Magnesium 500mg Daily • Grape Seed Extract 200mg Daily • Benfotiamine 300mg daily |
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"Thanks for this!" says: | DejaVu (11-09-2015), St George 2013 (11-07-2015) |
11-02-2015, 06:34 PM | #7 | ||
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I've tried about a half dozen different anti-depressant medications, and couldn't tolerate any of them. Tricyclics give me severe constipation, and make me impossible to live with. Prozac made me anorectic. Paxil made my head feel like a lightning storm was going on inside. A couple others made me want to sit down and eat handfuls of sugar right out of the bag. All of them completely shut down my sexual function.
Gabapentin I can tolerate. It's somewhat sedating, but I can stay awake during the day - and the sleepiness is welcome at night. It also helps a lot with my relatively mild but chronic back pain (I have a few minor disc issues.). For my PN, it controls twitching and cramping and moderates the pain somewhat. I can still function sexually, but not at 100%. I'm taking 1800/day. Neuro would like me to try higher, but I don't want to unless things get significantly worse. |
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11-03-2015, 10:20 AM | #8 | ||
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__________________
Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced) • R-Lipoic Acid: 100mg - 300mg Daily • Acetyl-L Carnitine: 1500mg Daily • Vitamin B12: 1000 mcg Daily • Magnesium 500mg Daily • Grape Seed Extract 200mg Daily • Benfotiamine 300mg daily |
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11-07-2015, 06:49 AM | #9 | ||
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Cliffman |
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"Thanks for this!" says: | DejaVu (11-09-2015), St George 2013 (11-07-2015) |
11-07-2015, 09:43 AM | #10 | ||
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I only titrated up every 2 weeks as it took that long for the symptoms to die down. I would have gone longer if I needed to. Did you start the 100 3 times a day all at one time ? Maybe your body just needs for you to do it at a slower pace. Just some thoughts. Debi from Georgia |
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"Thanks for this!" says: | DejaVu (11-09-2015) |
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