This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Everyone,

What do you use for neuropathic pain? Seeing GP Tues and would like some help to know whats best to ask for.....

Thanks

Claire

Gabapentin (Neurontin) was pushed for neuropathic pain using fake trial data. I am not sure if pregabalin (Lyrica) does indeed help. I think both of them are marketed by Pfizer.

sou

i'm afraid as usual i can't contribute much when it comes to pharmaceutical products, but here is what i do have to offer...

earlier this month i had two days of horrible pain in my bones for no apparent reason. i know that is not the kind of pain that everyone experiences but that was my scenario.

thought about how i had had an unexpected d3 spike a few months back (due to a skin cream, weird) and had stopped using the cream or any other supplemental d3.

without the support of a lab test, i megadosed d3 for a few days. the pain went away and has not returned. i have an appointment this coming wednesday to get a bloodwork requisition so i can see where things are at now.

I've just started taking D3. Whats a megadose? I'm happy to try that. I'd read from Dr Embrys site that 8000iu was the best dose???

hi claire. the first time i megadosed was per my hospital drug info desk's recommendations for how to boost a person's d3 level 50nmol/L in 10 days. you take 50,000IU per day for 10 days. the first time i did this i went from the 70s to the high 140s. that was in 2006.

in the meantime i identified and fixed a zinc deficiency. in spring 2009 i tested 103 for d3 and i wanted to be over 150 so i decided on 50,000IU per day for 8 days. this time instead of going up the anticipated 50nmol/L or so, i shot up to 271 nmol/L d3. (over 250 puts you at risk of developing hypercalcemia).

so it appears that d3 absorption may be related to zinc status (FYI average zinc level in healthy controls is 18.2 umol/l, zinc is considerably lower in MS patients, this may also be reflected in the low uric acid levels seen in many ms patients).

interactions like these are a great reason not to megadose blind, ie without some idea of where you are starting from and what you're aiming to achieve.

for d3 it's best to have levels over 150 but not over 250 nmol/L.

a daily intake from all sources should be 4000IU for basic maintenance.

if you take 8000IU per day that will boost your baseline level slowly over time. obviously it will be faster if you optimize other nutrients, or take much larger doses such as those mentioned above, for a week or thereabouts.

in the short and long term, be careful to get enough calcium and magnesium as well as zinc. never take your whole day's worth of magnesium at the same time as d3. split it up so that your body can take advantage of magnesium for its own sake, not just as part of the d3 process.

if you have any more questions, feel free
jimmylegs

I take Gaba every night, 1 pill, and it seems to work the whole next day. The one thing the HiCy never fixed was the feeling that may feet were always cold even when they were warm. I have no issues now.

I take Gaba because there it's a generic and it's much, much cheaper than Lyrica.

Hi Clare
I take 25mg amitriptyline for neurological pain, at night. It greatly reduces the pain during the day too and worked very quickly.
Downside is that it is sedating so I take it about 4 hours before bedtime so that it is less in my system come breakfasttime. I really cannot tolerate more than 1 small glass of wine either, any more and I really feel shattered the next day. It can take a few weeks to adjust to as it does make you feel more fatigued at first, though this can vary from person to person and your body does adjust to it. I think it is available in 10mg too so smaller doses might be effective in reducing your pain, and at a dose with little or no side-effects.
Hope that helps and good luck with theh appointment. I know I didn't treat the neurological pain I had for way too long and had nearly a decade of broken sleep. Now, I rarely wake up from pain anymore and amitriptyline has had a good effect on frequency at night too...it tends to make it harder to go so that side effect was actually very positive for me.

gabapentin works only sometimes for me. at first I thought it was great and then it started giving me tremors and nystagmus. it made me weaker come to find out that it brings down vitamin K and vitamin K guides calcium. calcium helps with contraction of muscles

Thanks for all your replies.

Jimmylegs - I'll have a look at my Vitamin regime. I would prefer to stay medicine free if I can, but sometimes it's so bad I feel like I need something to rectify it now. As it stands, things are easing so I didn't ask for any medication at all and thought I'd just ride it out.

Thanks sgain everyone - your replies were really helpful

Claire

good job claire glad you're feeling a bit better. if you have any questions about your regimen, fire away.