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Old 11-07-2015, 09:49 AM #11
St George 2013 St George 2013 is offline
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Help Spot on Patrick !

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Originally Posted by Patrick Winter View Post
I was told the same by my neuro doctor (i use the word doctor loosely) He told me to just go to the Mayo CLinic and that he is out of options with me.

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.
My neuro was pretty useless. My PCP has also been a life saver for me. My neuro refused to give pain meds so I covered that with my PCP. I could tell my neuro wasn't thrilled with it but he didn't come right out and say anything.

I finally broke down and went to a pain mgmt. dr and that was the best decision I ever made.

I do have to say my neuro was one of 3 dr's telling me I needed pain mgmt. for about a year before I ever went. I was afraid of the pill mills I saw on tv but mine is actually a very nice place and the other patients I see are just like me....hard working, everyday folks looking for some pain relief.

Debi from Georgia
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Old 11-07-2015, 09:52 AM #12
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Gabapentin is the only one I can tolerate. And the highest I can go is 1800 mgs a day. Any higher and I start hearing muted music and voices. Like a radio or tv is on in another room. Just drove me crazy But it does help as I had to be off of it for 6 weeks one time when trying something new. Then I knew it was helping some but I will take that 'some'.

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
Hi Debi,

I'm only on my second day with this med but yes, I took 100mg 3 times yesterday and have already taken the morning pill today. I have to take it will meals in order to avoid nausea. I could and may need to titrate up a bit slower. Thanks for the advice.

Cliffman
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Old 11-07-2015, 09:59 AM #13
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Hi Debi,

I'm only on my second day with this med but yes, I took 100mg 3 times yesterday and have already taken the morning pill today. I have to take it will meals in order to avoid nausea. I could and may need to titrate up a bit slower. Thanks for the advice.

Cliffman

I think you might find that it will help. Just do your night time right before you go to bed for a few weeks and then add your morning one and so on. I was good after about 2 weeks and then I could add another dose.

Let us know how you get along. This is just a crazy road we travel and I'm so glad we're all here to share. I've learned so much on here.

Debi
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Old 11-07-2015, 10:47 AM #14
Patrick Winter Patrick Winter is offline
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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
My latest neuro said he has Lamictal as an option for me down the line since I seem to not be getting great relief from gabapentin. Not seeing that that has been very effective but you may wanna ask about it. its in the same drug class as Gabapentin.
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• R-Lipoic Acid: 100mg - 300mg Daily
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Old 11-07-2015, 02:07 PM #15
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My latest neuro said he has Lamictal as an option for me down the line since I seem to not be getting great relief from gabapentin. Not seeing that that has been very effective but you may wanna ask about it. its in the same drug class as Gabapentin.
Patrick do you get any relief from the Gaba or is it just not enough to make it worth while? I hope the Lamictal works for you. Thanks for mentioning it as an option.

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Old 11-07-2015, 05:44 PM #16
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Patrick do you get any relief from the Gaba or is it just not enough to make it worth while? I hope the Lamictal works for you. Thanks for mentioning it as an option.

Cliffman
It's a case where, if I go off of it I notice a change in pain threshold. While I am on it I am wondering why it doesn't work better. I often times say I should just stop taking it for it really isn't doing a ton. Then when i do go off of it I realize it was actually doing something and go back on it. Lyrica worked but the side effects were not worth it. I could no longer drive a car, had extreme libido reduction and issues there (if u know what i mean ) and my entire body felt like it was stiffening up.

I don't think there's is much to Lamictal working for this. It's one of those desperate last option deals but it is an option.

Benfothiamine and R-Lipoic Acid taken together also offer relief. Only supplements where I can actually say there is pain relief when i take them although it doesn't last long.
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• 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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Old 11-09-2015, 05:10 PM #17
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Default Med Tolerance

Hi Cliff,

I am very sensitive to meds, and even more so after many years of repeated attempts to take them. I had my new neurologist comment on repeated attempts of meds and then becoming sensitive and/or allergic, which was a nice change, as most doctors do not acknowledge this potential.

In order to tolerate any med, I have to start very slowly, with small increases. I may then be able to find a place of tolerance.

However, certain meds... I just cannot do it. I had hung in with gabapentin for a few years, early on. Now, I just cannot tolerate it at all.
Cymbalta made me feel like my brain was on fire.

I encourage people to give an earnest trial, if possible.
It takes patience, for sure.
Yet, I fully understand if they report they are unable to do so.

There are a few meds within the same class which can be tried, in time.
I feel gabapentin is one of the safest in this drug class and I wish I could tolerate it.

Are you trying any topicals as well... lidocaine, magnesium?

I hope you find a place of comfort, soon!
We are all here to support you.

DejaVu
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Old 11-11-2015, 03:40 PM #18
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I take Cymbalta and Gabapentin with no problems.

I wish you luck with whatever you decide.

Hugs, Elaine

Remember in most cases you can stop medications if they disagree with you (once you've given them a decent chance).

These medications have to be stopped gradually, like Prednisone and other medications.

But you will be able to make changes. This isn't an all or nothing at all situation.
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Old 11-12-2015, 11:41 AM #19
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I take Cymbalta and Gabapentin with no problems.

I wish you luck with whatever you decide.

Hugs, Elaine

Remember in most cases you can stop medications if they disagree with you (once you've given them a decent chance).

These medications have to be stopped gradually, like Prednisone and other medications.

But you will be able to make changes. This isn't an all or nothing at all situation.
Thank you Elaine....your posts are most helpful to a newbie like me.

Cliffman
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Old 11-14-2015, 11:37 AM #20
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I take Cymbalta and Gabapentin with no problems.

I wish you luck with whatever you decide.

Hugs, Elaine

Remember in most cases you can stop medications if they disagree with you (once you've given them a decent chance).

These medications have to be stopped gradually, like Prednisone and other medications.

But you will be able to make changes. This isn't an all or nothing at all situation.

You are able to take those with no side effects at all?
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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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