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Old 07-01-2007, 03:51 PM #11
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Originally Posted by daniella View Post
I'm a nut I know but at least I admit it. I'm telling you I have seen so many psychiatrists and no one can figure it out. As for caffeine well I'm addicted to it and may I thought had something to do with sleep but then in the hospital I had to be off of it for 2 months. Lets talk hangovers it was the worst. I was given meds for that. Anyhow even after 2 months of no caffeine no sleep. No meds really helped with my anxiety/depression. For me it was more just self talk and therapy. I do know that when I was so underweight for 12 years it did effect my brain. When I got nurished I do see how my thinking is clearer. So maybe the sleep will come too.Makes for long days. All my friends sleep like 10 hours and can fall asleep anywhere. They joke with me that I'm like the mother of the group. If I ever get better in pain I need to be more young.
Dorothy what did you decide on the med?
That makes much sense. What you said about maybe the sleep issues will clear up. I believe you may be correct.

You may simply be one of those people that meds they give you for specific treatments work in ways unexpected from what they should be doing. If this is the case than maybe herbal types and supplements and vitamins might be the way for you to go.

The B-12 is good for depression and anxiety. One of the symptoms of a deficiency is depression and/or anxiety. Being mal-nourished as you were I'm betting you are lacking or low in many nutritional areas and a pox on the tests they run for this. They simply are not accurate or adequate.
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Old 07-02-2007, 07:33 AM #12
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Lightbulb Dorothy, are you using magnesium?

and Calcium in the proper ratios?

Cymbalta has some usefulness in chronic pain states where the brain overfires and gives faulty responses. As in RSD and fibromyalgia. Cymbalta has some usefulness and it works centrally.

However, having SSRI actions (along with some norepi reuptake), is not a good idea for cramping. People using SSRIs can develop muscle tension and cramps.
This is due to the fact that SSRI drugs reduce dopamine over time. Dopamine agonists are typically used for cramping, and RLS symptoms like you describe.
These drugs are typically Sinemet or Requip or Mirapex. However, they too have side effects and people often don't like them.

The best thing to try is a good absorbable magnesium. Support that with high potassium containing foods, and good absorbable calcium, and leg spasms should improve.

I don't recall what other drugs you are on, but sometimes you get cramping/spasms as a result of nutrient depletions that other drugs cause.
For example: diuretics for blood pressure.

If you try Cymbalta--be advised that it is VERY difficult to come off of. This would be in the 6mos+ time frame. Even the sales reps who sell it and use it ...discuss this negative attribute (at www.cafepharma.com Eli Lilly board). It is similar to Effexor, and that too is hard to come off of, and requires a slow taper and time.
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Old 07-02-2007, 08:34 AM #13
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and Calcium in the proper ratios?

Cymbalta has some usefulness in chronic pain states where the brain overfires and gives faulty responses. As in RSD and fibromyalgia. Cymbalta has some usefulness and it works centrally.

However, having SSRI actions (along with some norepi reuptake), is not a good idea for cramping. People using SSRIs can develop muscle tension and cramps.
This is due to the fact that SSRI drugs reduce dopamine over time. Dopamine agonists are typically used for cramping, and RLS symptoms like you describe.
These drugs are typically Sinemet or Requip or Mirapex. However, they too have side effects and people often don't like them.

The best thing to try is a good absorbable magnesium. Support that with high potassium containing foods, and good absorbable calcium, and leg spasms should improve.

I don't recall what other drugs you are on, but sometimes you get cramping/spasms as a result of nutrient depletions that other drugs cause.
For example: diuretics for blood pressure.

If you try Cymbalta--be advised that it is VERY difficult to come off of. This would be in the 6mos+ time frame. Even the sales reps who sell it and use it ...discuss this negative attribute (at www.cafepharma.com Eli Lilly board). It is similar to Effexor, and that too is hard to come off of, and requires a slow taper and time.
Yes, as you point out they say the same thing about Effexor. I just came off Effexor (About 3 years on it). It was nothing like any of the horror stories I've heard. I was only ever on 75 mg so that may have something to do with it. It took me a total of about 3 months to come completely off Effexor. Took me 6 months to come off of 40mg of Celexa. The withdrawals I *did* experience were the same for both drugs, oddly enough. The worst symptom I had and it was more annoying than anything was this odd feeling behind my eyes. Like when you have a fever and you move your eyes. I never did have any brain zaps or anything like that. No nausea... What I'm trying to say is these drugs effect each of us very differently. Which one of the SSRI's (dual inhibitors included) works well for me may not work for anyone else the same way. Weaning off can be an individual process as well. There is no "one-size-fits-all" when it comes to these kinds of drugs. Period.

My NP is probably one of only a few of the GP type docs that I know of that is familiar with what the withdrawal time frame really is for SSRI's. So many people have told me their docs think they can just stop taking it in a few weeks. 3 at most. Many of them have told their patients they can simply stop taking it.

I agree: Try the mag first. Try anything else that has a hope of working before going to any kind of drug that 'plays' with your brain chemicals.

I experienced the first and only suicidal depression I have ever had late last fall or there abouts. And it was due to medication I was given for PN. It seemed to be a bad reaction between the Gabapentin and the Effexor Gabapentin did a big number on me. It just occurred to me while writing this post that my determination to not be on these kinds of drugs anymore is because of that suicidal depression. Now I *know* what the worst feels like for me. And nothing I had ever experienced prior to that was as bad. Well, perhaps the anxiety...that felt pretty bad. But I don't think I'll be needing any kind of AD anymore.

Someone correct me if I'm wrong but I think a lot of us find this board because we're pro-active when it comes to our own care. I don't know about anyone else but I *know* that doctors are just human and make mistakes and they certainly do not have all the answers. When my neuro told me no known cause I was a bit confused. How could something that causes such damage and discomfort have no known cause? Granted, there are some Dx's of PN that don't have any cause that is found easily. But I also believe that eventually they will find all the causes. And that treatments will involve more than simply throwing meds at the symptoms. That's what many people are dealing with right now, only treating the symptoms not the underlying causes.
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Old 07-04-2007, 10:03 PM #14
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Mrs D.

I am taking magnesium...400 mg of magnesium oxide, and calcium 600 mg 2x /day. I take atenolol for my bp and also diovan (which does have 25mg of hctz) Of course I take the b vitamins and 2800 mg/day of neuronton. I take alpha lipoic acd also.

Sometimes I thing I read something and someone says it is good and works well so I try and and now I have found myself taking 24 pillsa a day. Beforethis began 7 years ago I only took one pill a day. it just amazes me.

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Old 07-05-2007, 06:20 PM #15
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Check out the latest on the news regarding SSRI's of which Cymbalata is one.
SSRI's are associated with bone loss in the elderly...they did not define elderly. Now I assume they used a control group not on SSRIs and one taking SSRIs and did bone density tests. I don't know for sure what variables they controlled for or what they defined as elderly. Post menopause usually gets us females tossed in that group.

I have always had my concerns regarding SSRIs, predominantly because they are the most prescribed drug. They are generally the first prescribed drug even before any test is done....what is wrong with that picture?

Prior to SSRI's hitting the market, drugs for depression were more dangerous and less often prescribed. You had to see a therapist for 8 weeks first....now we have a new use for those old drugs...pain control (tricyclic antidepressants)...Those are highly anticholinergic and if you look up what an anticholinergic does, you will see what a lot of folks have as symptoms of disease or side effects.

SSRI's combined with tricyclic antidepressants are a recipe for disaster. I refer you to the Cytochrome P450 chart online. SSRI's impede the metabolism (efficacy and excretion) of many other drugs.

If Cymbalta works for you fine. If it doesn't you'll know. For myself, I tried it and after 3 pills I thought I would die....that solved my indecision. Other people love it.

By the way, Daniella, I don't sleep either, and I have what are called 'paradoxical reactions' to medication. I have had episodes of 'anesthesia awareness'. I had a C-section when they thought I was out...I wasn't. The worst was getting intubated...sometime after that I konked out, but by then they had already cut...I had a lovely girl. She is in her 30's now. I had one other episode with general anesthesia...I crashed upon 're-entry'. My BP and P and temp plunged....simply described as shock. I can not be put to sleep with massive doses of choral hydrate. Benadryl keeps me up and ticking with bodywide RLS for days as does any anticholinergic or antidopaminergic. There are a few old standbys that I predictably react to...and that is it. Those are mostly the drugs that doctors are loathe to prescribe.

Good neurologists admit they don't know much about neurology, nor the drugs they prescribe. Mine aptly asks me what 'poison' I haven't tried yet, and we together decide what 'might' work...(haven't had a lot of luck.) Mind over matter seems to have been my best medicine, and lately, my mind doesn't matter..it isn't working all that well for me either. Eh, tomorrow is another day.

We are not all wired the same. It doesn't mean we are sick, because we react differently to meds, we are just wired differently.

You can be phenotyped to see if you have any genetic polymorphism in the identified families of the Cytochrome P450 system. Some people just can not tolerate some drug 'families'. Plus people with autonomic neuropathy have a tendency not to react predictably to drugs.

When new drugs come out, I prefer to let a few million other folks down them first, and see how they fare. Then again, I simply refused to eat Chinese fish when I saw them on the market too. Unfortunately most of us have enough melamine in us to be featured on HGTV, not to mention the raft of antibiotics we eat via animal products...Ah yes,
back in the old days we just had cholera and tetanus...it was so much simpler then.
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Old 07-05-2007, 09:17 PM #16
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Lightbulb oxide form doesn't work well, or at all basically.

Quote:
Originally Posted by Dorothy View Post
Mrs D.

I am taking magnesium...400 mg of magnesium oxide, and calcium 600 mg 2x /day. I take atenolol for my bp and also diovan (which does have 25mg of hctz) Of course I take the b vitamins and 2800 mg/day of neuronton. I take alpha lipoic acd also.

Sometimes I thing I read something and someone says it is good and works well so I try and and now I have found myself taking 24 pillsa a day. Beforethis began 7 years ago I only took one pill a day. it just amazes me.

Dorothy
Dorothy, Magnesium Oxide does not work....please read my mag thread on
the vitamin forum:
http://neurotalk.psychcentral.com/showthread.php?t=1138
There have been studies showing very poor absorption (around 8mg for the 400mg dose) of oxide form. I have alternate suggestions on that thread that work much better. In comparison 3 oz of unsalted almonds have 270 mg of Mag available to you naturally.
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Old 07-12-2007, 11:55 AM #17
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Default Cymbalta = evil

you know, more power to those that Cymbalta works for but I found it made my pain worse.

I was originally being treated for RLS which is how I ended up on it. Turns out it is a painful small fiber PN of unknown etiology at the moment (well, so that's what they think it is now, who knows what the deal will be in 2 years or so).

So my experience was that the pain was worse as well as the buzzing. I also got whole body jerks as a side effect whenever I was attempting to relax. They weren't constant like every minute but would come completely out of the blue. *If* the drug was working, this wouldn't have been a side effect that would have caused me to get off of it.

I did think it negatively impacted my sleep...night sweats, extra bad nightmares, seeming inability to get into deep sleep...

And yes, getting off of it was really crappy..I was awfully moody and the sleep got worse before it got better.

Unfortunately since these drugs effect us all so differently I think there's almost no choice but to at least try them because there's no definitive measure to determine whether or not it's going to work for you.

My new best friend is currently a low dose of lyrica 2x a day, works pretty good for me but I know others have had different experiences.
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Old 07-12-2007, 12:55 PM #18
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Default Cymbalta

just enhanced the side effects of Lyrica and Tramadol of which I had maxed out on, add to that Vidicon the drug HOUSE craves and is very additive. After 5 years of seeing all kinds of doctors and the testing involved I quit everything cold turkey. Was fortunate at the time of reading an article in the neuropathy association newsletter from a medical university on the west coast about using marijuana for pain control. No wonder the government keeps this stuff illegal it works. 75mg Lyrica x 2 with a half bowl of THC at night 1 hour before bed time makes for a good nites sleep. Yesterday I was back working in the yard repairing some bird feeders when my wife came out with a glass of lemonade gave me a hug and said "Welcome Back" . My pain levels have dropped to a 2 level since this transition and not being a mental and physical cripple is a born again experience. The best thing about going cold turkey was the diarrhea an empty colon is a happy colon. IMO being bound up all the time is a major source of depression. If you have any questions ask me and I'm not a drug pusher or dealer, just an old cat who won't tolerate putting up with pain
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Old 07-12-2007, 05:28 PM #19
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Default Hi D and S

Dorothy i agree with the Dr. wait until your blood tests come in . Sjoren's
can play all sort of tricks on the body. I have a terrible time with sleep-
ing problems,and nothing knocks me out.

Hi stagger good for you,i wish they made that legal everywhere. Sue
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Old 07-14-2007, 01:24 AM #20
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Default I use Cymbalyta

I take 40mg a day. No way does it touch my NP pain. But it works good for my depression. It works better than anything else I have been on in that aspect. I don't know what a dosage would be for it to work on my pain. Because there isn't a generic for it, it is pretty expensive. Luckly, my insurance pays for it.
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