sorry i was actually reading the line above the b-12. my b-12 level is at 576. i freaked when i just read your post and looked over it again. so right now the only concern is my abnormal protein in the blood. also as a side note i dont know if this has any involvement but my dads 2 brothers both died of lymphoma and my dads mom died from cancer also. i believe hers was a blood cancer too. i hope i didnt inherit a cancer from them.

That is much better. Not great, but better. So still take that product you are using, and make sure it is on an empty stomach. We like to keep our B12 at 1000 or higher, those of us with nerve symptoms.

Most of the proteins are fairly benign. But it is a special thing, that only certain doctors can evaluate.
Still changing your diet can help with it, and improve your circulation. So don't ignore that aspect.

Thanks, mrsD -very helpful information -and one that puts my mind at ease. I have another question.

I am certainly paranoid about putting anything in my body that might harm or aggravate my PN pains -this is why I do NOT take any gabapenten/Neurotin, Elavil or anything other than my low-level Clonazepam and vitamins. But here's something that has been bothering me.

...Get ready to laugh - I have been avoiding any foods with the vitamin "B6" in it. I was taking a "Men's Daily Vitamin" before I got Cipro Toxicity but stopped afterward, because I did some research that states that too much B6 could actually harm your nerves and worsen your PN, especially if your nerves are already damaged...

Now, I figure I'm getting enough regular B6 from food as it is since I eat a whole bunch of stuff like meat and grains and such. But I make it a priority to avoid bought foods that have B6 added to it.

For example I gave up my waffles, pop-tarts, and all cereals, because B6 is added to them.

In tow, I also have recently stopped using Fluoride toothpaste and rely on regular teeth brushing with an anti-gingiervits "non-Fluoride" mouthwash. This is because "fluoride" is one of the ingredients that make Cipro poisoning so toxic.

I don't know if this is paranoid behavior or not, but I'm just acting on my "better safe, than sorry" impulse here.

I'm curious what you think of this.

To be frank, one thing you should be considering is the use of your benzodiazepine drug Clonazepam. And at a high dose at that, IMO.

Long term use of benzos leads to tolerance, and as the benzo wears off, until the next dose, there are mini-withdrawal symptoms. These are almost identical to most PN symptoms.

So eventually you will have to face that Clonazepam realistically.
I discuss mini-withdrawal on this post:
http://neurotalk.psychcentral.com/post924688-17.html

Also a poster here found Diazepam worked in the short run, but in the long run was a problem for her:
http://neurotalk.psychcentral.com/post601718-5.html

Clonazepam and diazepam are very similar. They both have antiseizure properties, and must be tapered off slowly. Very slowly. Sudden withdrawal of benzos can cause seizures in some people. Because they are antiseizure they work on nerves to dampen signals. When they wear off, that releases the nerves to a more excited state, and it can be worse than before. So it becomes a vicious cycle.

This is where you should direct your paranoia, IMO. And it won't be easy or quick to taper off this dose you are on.
The beginning dose of clonazepam (Klonopin) is .25 to .5mg and you are using 2mg a day. A low dose would be .5mg at bedtime.
Dosing is RELATIVE to the drug used. Just because yours is 1mg does not mean it is "low" by any means.


It is wonderful that you got rid of the PopTarts...I don't see how anyone can eat those. Getting rid of PopTarts, sugary carbs, etc really helps with blood sugar. You can still have old fashioned unflavored Oatmeal.
That has lots of staying power, no sugar added, and soluble fiber for GI health and some cholesterol control. Add a little cinnamon and you are doing well. Most cereals have sugar added...even the Quaker Instant Oatmeal ones. Low fat dressings have surprising sugar content, and may spaghetti sauces are filled with sugar.

Tapering off Benzos like clonazepam is difficult and unpleasant and if done too fast, dangerous. Many patients eventually find that they have
to quit them for one reason or another. This is why they are less prescribed today than 10 yrs ago.
You should be supervised by a doctor if any taper is attempted.

Thanks for the links – I will check them out for sure. I am concerned about Clonazapem and its addictive properties, as you have noted. Currently -and for nearly a year - I only take 1MG a day...Not 2. Just one 0.5 in the afternoon & one 0.5 at bedtime. -- Compared to the 3 MG a day I used to take four years ago – I’m well on my way off of them. I did extensive research on Clonazapam and had several serious talks with 2 psychiatrists and 2 neurologists about it. I was prescribed and already on Clonazapam long before I got PN for around 4 years. This was originally for a chemical imbalance in my brain and for anxiety. In that time, I went off of them for months – then went back on them at a much lower dose.

I was actually off of them for a while, even when the PN was bad, but I couldn’t handle the stress of being in pain – plus the last time, I went off of them too fast as well. Clonazapam is prescribed as a pain management drug by the Center for PN in Chicago and others – it’s the most weak and less dangerous one compared to Elavil, Neurotin and Cymbalta. In fact, Clonazapam is prescribed to deal with anxiety but not to stop the pain itself. However, my doctors believe that it does help relieve pain, by calming down rampant electrical signal/activity in the brain, and thus causing a lessening of pain. Everybody’s system is different, but this seems to work for me.

It is my goal to be off of not only Clonazapam in the future, but also ALL medications of any kind. If I were not plagued by PN pain, I would already be off of them.

In fact, I have an ordered plan with my doctors when this occurs. At the point when this PN fades or goes away – they will put me on Melatonin therapy to slowly wean me off of the drug. They use Melatonin for this very same reason – much so in elderly communities. According to my doctors, this should take no more than a few months at best.

In my own personal experience, I went cold turkey on it once and was affected badly with withdrawal systems, but I did get over it. Indeed, withdrawal has a lot of symptoms similar to some PN – but I have to say NOT the nerve pains – just the jitters, anxiety, tremors, and psychological effects.

I went back on it on advice from my Neurologist, who said that taking nothing for PN pains would only push me over into the mental breakdown zone. Though prescribed to me at times for PN: I refuse to take Neurotonin/Gabapentin, or Cymbalta. According to specialists, they are far worse than taking Clonazapam, because they can cause permanent damage to your nerves – the very same affliction that PN horribly causes in the first place.

Basically, I won’t take that risk. …And frankly I can’t, since the Clonazapam I take already has some effect on my GABBA in my brain – and adding another medication that would affect the same region simply isn’t wise.

Also, Clonazapam withdrawal is NOT permanent – just really uncomfortable. The concern with Clonazapam is the potential for addiction to the drug – but even this addiction is not permanent.

I am feeling a bit better every day so far - thank God. I truly hope I get to the point soon where I can get off all drugs. I'm certainly not an advocate for Clonazepam or any other drugs for that matter. As it is, the Clonazepam is the ONLY drug I’m on now and compared to others in my mental health group, the 1 MG dose per day is a pretty small dosage compared to the other strong meds they are taking and at such higher daily rates. Still, I look forward to the day, when the only pills I take are carefully chosen vitamins.

...besides the Clonazepam issue here -what did you think about avoiding the B6?

...

B6 isn't the problem with the junk foods, simple worthless carbs. It is great you are eating better. Our diet is the most important thing and we have full control of that. Then supplements and exercise.

I don't take meds, but I hope you will be able to learn all about them with Mrs. D's links.

I am so happy you feel better and I hope you keep improving.

The only reason B6 is in those carbs you consumed, is to give them "some" nutritional value (which is minute IMO). Often empty food or food with highly refined flour has some small fortification added, to make people think it is "good for you".

It is insignificant when considering B6 toxicity which is pretty uncommon and only occurs when over 100mg is consumed daily for long periods of time. Some doctors, use the upper limit of 200mg a day of B6.

I don't think there is a reason to use more than 50mg a day for most people and situations.

This is good, that you are weaning off the clonazepam. In your first posts you said you were taking 1mg twice a day.

Klonopin comes in disintegrating tablets that start at .125mg and up. This should help you wean off more comfortably when that time comes.

Klonopin became very heavily used when Valium's patent expired. Many became very habituated to it, and I've read it can take 6mos or longer for a taper completely off.

Elavil is not toxic in the small doses used for PN. It can work at 10-25mg a night. There are some anticholingeric side effects, which males with prostate issues might not be able to tolerate.
Elavil (amitriptyline and its active metabolite nortriptyline) are the only antidepressant (TCA type) that have shown some use in stimulating nerve growth factors. Hence, helpful for damaged nerves.

This has been an interesting and informative thread, thanks for everyone's contributions. However now I am concerned about the gabapentin I am taking for the PN. I would not be able to function without it though, so does that make it worth the risk?

There are not many "risks" to gabapentin.

Other than it stops working for many, or only works for 30% or so. (according to studies).

The major risks with it are having an accident or falling because you are sleepy or impaired by it.

Thanks , Sally & mrsD:

I was told Elavil as well as Gabapentin can cause permanent nerve damage, especially if you get swelling (Edema) - I won't take anything that has even the slightest risk of that. That's just how I am.

As for the "added B6" - yeah, I think it's added on unhealthy foods to make them appear healthier. I'll still keep my distance from them though -as avoiding them might help me manage my weight anyway. (I'm just over 6 feet and weighed nearly 285 pounds just a few months ago. I'm now 240 pounds and still have a long way to go.)

For a very short time when I was suffering with a prostate infection -I had upped my Clonazepam to 2 MG per day, but that was only for about a week and a half. I cut it to 0.5 a day -then upped it again to 1Mg a day after the PN pains hit.

I really hope to be well enough to be off of all drugs soon. My plan is to work with my doctors to wean me off of it as my PN pains decrease.

I was asked once in group therapy - that even if my PN pains faded out - what would I do about my anxiety? Would I still take the Clonazepam?

My answer to that is no. I realize that anxiety is uncomfortable and aggravating at times but it's nothing compared to PN -or drug dependency. Anxiety attacks pass -I know this. So if I get anxiety in the future -and I'm sure I will, I'll just weather the storm -it will pass and I'll be glad I can deal with it in some other way that does NOT include meds.

I'm an artist and author, so I have some work that keeps my mind off of stress and anxiety most of the time. However, some other sources of stress are hard to avoid and stress for people with PN usually equals pain - at least for some of us, some of the time.

On a personal note that I'm sure some people here can relate with -
I have a spouse that nags quite a bit, and if you've been in a relationship with a person like this for years, the stress of it takes its toll on you, especially if they drink alcohol a lot. ...Basically, even for men, verbal abuse can stress anyone out if exposed to it for years. Though on her behalf - I'm sure that living with someone mentally "compromised" isn't easy either. LOL

That noted, I recently learned to humor through most of the arguing and such -to a point now where this kind of thing doesn't bother me much. I would think this mental transition needs to take place if we are to keep our minds healthy and free of anxiety.

In fact, just knowing that anxiety WILL pass in of itself will be enough for me.