hi ......and questions
 

hi everyone and thanks for a great forum

i joined a while back and with one thing and the other havnt done a lot of concentrating on this forum in hopes that my supplements might help

i got PN after a flu vaccine nearly 6 years ago. along with labrynthitis and meningitis.
the neuropathy really started up right away but it took a while to be diagnosed. assorted EMG tests show a mixed neuropathy but predominately sensory. am not planning on having any more any time soon :(

the short story is that i am seeing a specialist in PN and an ordinary neuro.
along with having a balance neuro if i want to see her as i have lost all balance on the left side

my medications that relate to this are......neurontin 200mg morning and 300 mg evening.
i dont really know how that has helped since i started 6 months ago but i cant take more than 200 in the morning and still be awake.

i am taking B12 once a day...my levels are over normal now but my doc and i agree i should keep on it
2000 vit d a day....my levels are just ok and doc and i agree i keep supplementing for the moment
2 alpha lipoic a day
omega 3 and 6
multi B

i have had totally normal blood glucose, blood sugar levels since forever,
however i have recently had an insulin level done that is way over.
our aussie levels are differnt to yours but it is about 4 times normal tho the test is said to be not sooooo reliable
i am now on a lower carb diet and headed to both a diabetes education seminar and an endo who my GP thinks will put me on Metformin for at least a while til i get weight under contol

the pain levels fluctuate but so far i have managed to not hit the really hard drugs as i am anyway allergic to codine and morphine .

i cant see me upping my neurontin too much tho i could add more in at night i guess. it was the cause of about 12 pounds of weight which i have just managed to get off

i have high chol and am mediated
BP is hugely erratic since vaccine (tho not so bad of late) and medicated.

i am moving house soon and am flat out managing this but after i am settled i am looking for more exercise options .
i manage about 30 mins walk a day most days.......but not always.
do two 40 min fairly active pool exercise programs a week.
that may go to 3 if i can afford it later this year when the dust settles

anyway
i would be grateful for any thoughts anyone has as to my supplements which i conceptualized via this forum reading and for any other ideas to maximise life generally

many thanks
the ditzydame(who even got her forum name wrongly spelt ):confused:

Welcome to NeuroTalk.

A fasting insulin may show high if you exercise before having it drawn, like briskly walking a long way into the clinic from a parking lot.

Elevated insulin can come from Polycystic Ovary syndrome in females also. So I would pay attention to the high reading.
Sounds like you are modifying your diet some, and that is always good.

If you are using the alpha lipoic, the original mixture one, you need pretty high doses, and it is best to take on an empty stomach.

If you are on a statin drug for cholesterol....you might have to rethink that. They have been shown to elevate blood sugars, and they can cause PN.

This is a good place to discuss things...so jump right in when you need to.

thanks Mrs D:):)

i only ambled slowly a very short distance for the blood taking.
i have one sib and a maternal aunt with diabetes.
i have one cyst on one ovary but i dont believe anyone believes i have any other ovary issues.
i need another U/S to check the size..... i keep forgetting.

the alpha lipoic i take is a cap of 300 mg and i generally remember to take it on an empty stomach.
what are your thoughts on that??

i have heard about the statins and diabetes but anyone i ask here says it is not so.
i have seen a video of someone in the USA discussing this and purporting to show the leaflet from the drug box saying that it causes diabetes. here in australia there is no such leaflet.

the neuropathy is from the vaccine. that is not even argued by my specialist.
i had the symptoms within days of leaving hospital after the meningitis which was on the heels of an immediate reaction to the shot.
it is listed on the rare and very rare side effects for the local manufacturer..CSL ....practitioners handout and in different wording on the patient leaflet.

i cant remember if i was on Lipitor at the time as i have been on and off it for some years.
i have triglycerides to hell and cant take the relevant drugs as they create cardiac problems.
weight loss will never change the bad numbers there but they can improve.

thanks for the input

dd

300mg of the original alpha lipoic acid--- if the word ALPHA is on the label and not --R-- is not enough.

You need 600mg -1800mg of that a day to see effects. 1/2 of Alpha type is inactive. This is why some of us now use R-lipoic acid instead. (the stabilized for is the most soluble).

The information about statins increasing blood sugar is NEW...
the US media has just reported on this feature, along with memory loss, within the past month or so.http://news.yahoo.com/fda-adds-diabe...184650199.html

Of course, this means for everyone taking statins now and in the past, may have these effects. I guess Big Pharma could not suppress this information any longer, or is choosing to release it now that patents are expiring finally. :rolleyes:

For elevated triglycerides, I'd suggest some Omega-3 fish oil, or Krill oil. This can lower them up to 50%, for some people.
In the US there is an RX version of fish oil, called Lovaza, which is used for elevated triglycerides. You need at least 3 or more regular fish oil OTC to match that. But there are many concentrated forms out there now, so choose one of those. With the Krill Oil, try 3 a day. Krill is a smaller capsule, with better absorption so some people prefer that now.

thanks heaps MrsD
i can up the dose of the alpha lipoic. it is not cheap either. i will look for the R type. not sure it is available here.... so if it isnt.... is there a particular supplier i might try in the USA.?? postage kills but i have bought supplements in in the past and our customs dont fuss over it unless it looks like commercial quantities.

i am doing a fair bit of 3 and 6 omegas. krill is being heavily advertised here right now .nuts i do anyway and i add SLA to my cereal and could eat it A LOT if not reigned in LOL

interesting about the statins and diabetes.
i have an online friend who is pushing me to drop them but i think i have to loose some cholesterol first .
but it is in my mind
my blood sugars are ok it is just the insulin levels. started testing the sugars today so will see where that goes.

feet are killing today...one day past a stormy day in the general area but not near me really.
the weather is soooooooo variable and we have had little summer so it is so hard to see a pattern and thus hard to know if neurontin is worth it.
tho i suppose i have more relief at night with it and my feet are less often a 30/10 on the pain scale

i really appreciate the forum and you endless assistance to everyone.
it is a real blessing to have such a resource in the face of little that i have found around me here (well i might be missing something and right now that wouldnt suprise me as i move house and create a new kitchen and and and and .......walk the dog if i can :)

DD

iherb.com ships overseas. Some of our posters here have used it.

This is the R-version of stabilized alpha lipoic acid:

http://www.iherb.com/Doctor-s-Best-B...-Veggie-Caps/4

You can check Amazon too, as that is where I get mine now.
Same low prices, better shipping costs, but I don't know their overseas policies.

You can use up what you have, but just remember to take on an empty stomach for best absorption.

My Triglycerides were over 500. Doctor panicked and put me on Tricor. This was right around the time that I was being diagnosed with hereditary neuropathy. My condition immediately kicked into high gear and my balance became so bad I could barely stand up, let alone walk. Pain levels went through the roof as well. My neurologist barely hinted that I might want to go off that drug. Later I find that for CMT in particular statins and Tricor are poison.
Moderate dieting, walking when I am able, and fish oil seem to have brought the numbers down below 300. I do not really care that much. The connection between high numbers and heart disease is not as dramatic as the loss of quality of life I experienced on the drug, which never knocked more than 100 points off my numbers anyway.
You sound committed to the meds. I would do more research. Good luck.

[QUOTE=Susanne C.;865177
You sound committed to the meds. I would do more research. Good luck.[/QUOTE]

hi susanne......
ohhhhhh no
not at all committed to trig drugs.
i had to stop the first one because i developed heart arrythmias on top of one i already had and was down to a pulse of about 30.
thought i was dying and was put in the local rescus ward which scared me closer to death anyway:eek:
it took me some time to convince the cardiologist that there was relationship.... but a 24 hour monitor was enough in the end.
meanwhile i had stopped, got better and restarted to simply prove to he and anyone else who cared to listen........that the stuff was not for me.

the next drug i tried made me feel like i was poisoned so i stopped very quickly.
that is the end of available triglyceride drugs here.
so i am not medicated for that....and now never will be.
the statins.....i will continue for a bit but i am pretty committed to getting off them when i get my chol to something approaching half what it is without them. again really ugly numbers.
that is requiring weight loss which is not happening so i am putting some hope in metformin and a supervised diet tho the dietitian is not thinking how i am thinking but that is another story. i meet the criteria for what is called here *metabolic disorder* and so would my sibs. one is frank diabetic 2 and if i dont get sorted fast ...i will be too.

we wont discuss the Thai lunch i had today with son and friend helping us pack to move . it was sooooo good and loaded with oil of course.:eek:
i think the next class i am doing at the local hospital dietitian dept is about eating out and take out food ;)
i have however lost weight and expect better numbers in a couple of weeks with new testing for the endo.

thanks for your input

I meant to say that all Statins are problematic for PNers, not just Triglyceride meds, but as your experience clearly shows, the triglyceride meds are really dangerous in an obvious way.
I understand being afraid to go off the meds in the case of really high cholesterol numbers and a family history of heart disease. My cholesterol was high, but very secondary to the triglycerides. At my last visit, a few weeks ago ( I see my PCP regularly for my pain meds, there isn't any treatment so my neurologist dropped me), he said my cholesterol was way down into normal range. The only possible explanation is diet and weight loss. I am a dedicated walker, but have been able to do less, not more, because of other commitments especially teaching each day, which was a mistake from a health POV. I come home fit only for a nap.
Dieting, especially with a sluggish metabolism like mine, is really hard, almost impossible, but only almost. Read the discussions about the anti-inflammatory diets. They really work. Only eat the edges of the store- fruits, veggies, meats, and eggs and dairy and go light on the dairy. In fact, take about half of what you would normally eat, especially of prepared or restaurant foods. Bring the other half home for another day. Eating the same food as the rest of the family but a lot less of it has worked for me. Do not believe whole grains are always healthy, go lightly on grains, they are still mostly empty carbs compared to veggies. Most importantly, do not give up because you had a bad eating day, start right back up the next day. One day will not affect your success, but four or five in a row will!
And give the fish oil a real try. Be sure to find one that doesn't make you sick or repeat on you. They are available, but so are some seriously nauseating ones that will send you to the freezer for some ice cream to kill the taste!

Just so you know, the Krill oil does not repeat.

If you do go on metformin be aware that over time it depletes
B12 in about 40% of patients. So you would be wise to take a
B12 supplement (on empty stomach) if you do try metformin.

thanks suzanne and mrs D

i will check amazon for the Lipoic when i run out.
just got to remember to toss it down my throat when i am running on empty stomach !.
am getting better at it.

the statins
the dam statins
my chol is way too high to stop right now....given it has not changed my pain levels when i went off it a few years ago for whatever reason.
i had forgotten that til right now.
i was actually off them for maybe around a year and it was one of my worst periods pain wise so i cant make a connection there for me.
my chol has never ever been normal even when i was younger and a very normal weight.......and extremly active at work and at home.
now i can walk 20 mins on a good day at best.
however......statin free on the list of things to aim for and i will discuss it with the endo i see. she is probably fairly conservative but if i dont like her there is another option who is going to be way more expensive but lot better looking and younger ;)
i will also raise it with the PN specialist neuro... who is a woman with a major brain and who will see me when i want. i dont bother much really.
she has sent me for some extraordinary tests to find about my balance and BP and heat control issues.......so i have to go there ready to stop her referring me for something new:eek:
once or maybe once a year and once to my regular everyday neuro who is good at patting on the head and being nice is about it.
the PN neuro is good value as she travels internationally more times than i have meals out so she is going to be (hopefully) wired into what is the happening things .

if i do the metformin i will watch the B12 levels ...thanks Mrs D. i supplement anyway .
i have two friends who have odd diseases and who have done well on B12 but so far going over the top of the range for me has shown nothing in the way of improvement. i would love to add in more neurontin... but even at lower doses it is not compatible with regular daytime life . total of 500 mg a day is not much

i am doing a dietitian supervised diet which is ones own choice of food but within a range for slow weight loss. more an education thing than anything.
now i have the raised insulin levels i qualify for diabetes education so will look at that with interest .

moving house is proving a challenge and the next few weeks will send me more insane than the past two weeks :eek:

thanks for the support :hug:

hi :)

been gone for a bit and not bought new lipoic acid.
it has been a long story and i have even more questions to ask but will come back for those ;)

right now i need to get the lipoic.... and looking on amazon......are there any recommendations for brand/quality/price ?
dose ???
is the sustained release version useful??
it would be good if it only had to be taken once a day eg

many thanks for any wisdom

i cant post a link to the amzon page i got as i dont have enough posts

Doctor's Best is the brand most of us use. It is very good quality and affordable.

R-lipoic acid 100mg once a day, Stabilized form.
http://www.amazon.com/Doctors-Best-S...9297019&sr=8-1

Be careful on Amazon as there are duplicate entries with different prices.

Also available at a similar discount at iherb.com
iherb ships to Australia... not sure about Amazon however.

Do you eat sugar? I stopped that and bad carbs even though I have very good glucose numbers. Has been wonderful for me.

that product is not shipped here sadly.
amazon has arrangements to not upset some aussie retailers of some goods that some aussies like to import soooooo much cheaper:rolleyes:

looks like iherb is the go.

what dosage of that brand is everyone taking?
i am doing 1100 mg of the alpha lipoic.

many many thanks .....again:)

ETA..sorry....i see the dosage and have ordered ...thanks

i am on a pretty decent carb level.
my glucose numbers are good
i had a glucose test along with insulin levels and the results are not good.
i am to start metformin 4 weeks ago but have had other problems and have delayed starting it so as i dont get side potential side effects mixed up

glad you are doing well :)

I don't recall if you are still taking the statins for cholesterol?

If so you need to supplement CoQ-10 as well. Statins block the natural synthesis in the liver of CoQ-10 which is a natural substance we need for muscle and cardiac health and energy.

So look into that option as well.
about 300mg of oil based form (soft gelcap)
or 100mg a day of the new water based soluble type.

http://www.umm.edu/altmed/articles/c...q10-000295.htm

thanks very much MrsD.
you are such a great mine of information.:)
i have not tackled going off the statins.
the dose will come down probably soon tho.
the bit of weight i have lost has allowed me, so far, to get my BP meds down a bit. the statins are next in line after i get onto the metformin which will be after i sort out my cardiac irregulatities.

it has been a torrid last few months !!

I found help for PN pain....
 

My name is River.......and for years I cried me one!!!

I suffered with PN for YEARS with no relief and prayed for the good Lord to take me. It finally occurred to me to see a doctor. I won't bother you with all the treatment he put me on because I want to get right to the one that WORKS!

I had nasty sores break out on my legs. A nurse came to the house 3 times a week to treat them, for 2 years. Finally she called the doctor and wanted me to go to the hospital, and so that's where he sent me. Upon admission they found my heart rate was 177 when it shouldn't be over 100. The nurse told me later they expected me to die.....nice eh? lol They called in the heart specialist and he started me on a few meds, IV. While in there for 2 weeks I had NO PN pain whatsoever! None, including the week after. 3 weeks with no pain, I couldn't believe it!

Next time I saw him I asked why and he said he mixed up a little cocktail for my IV.....LIDOCAINE!

I now go to the hospital once a month and have lidocaine infusion. I've been doing this for over a year now and it's a miracle worker. I also take Gabapentin caps 3 times a day........that's it! Trust me people, the lidocaine infusion works. Now your system might get used to the dosage in which case they just increase it.

I'd love to hear if anyone else has found this treatment helpful.

I live in Ontario, Canada :grouphug: