[ditzydame]

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 )

[mrsD]

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.

[ditzydame]

Originally Posted by mrsD

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

[mrsD]

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.

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.

[ditzydame]

Originally Posted by mrsD

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).

For elevated triglycerides, I'd suggest some Omega-3 fish oil, or Krill oil. This can lower them up to 50%, for some people..

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

[mrsD]

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.

[Susanne C.]

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.

[ditzydame]

[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
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.
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

[Susanne C.]

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!

[mrsD]

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.