Replay on Neurontin
 

Sooo, I decided to try this neurontin thing again....100mg is all I can do right now....3 times per day. I am sure it will go up, but...for now...I feel 3 sheets to the wind, and not in a good way.:p

Trying Neurontin Again
 

Good luck with this. Was wondering if you have ever tried a regimen of R-alpha lipoic acid, thiamine, methylcobalamin and whether they did you any good?

Sheltiemom

No, I have not....I have to open flax seed oil capsules, since I can not swallow well. My potassium pills are horse pills and I have to CHEW that cr@p since they don't order me the fizzy kind. I have not meandered into the vitamin section in a while....been sidelined in the baby section....(today's young parents have too much stuff these days....I almost hung myself on this baby front pack. I have visions of putting this 20 pound load in there and falling on my nose never to rise again...or else rising in 3 days, which would be even scarier..... My grandkid was almost permanently afixed to the Walmart cart in this baby cart-seat cover to keep him from getting germs from the cart, and I almost broke both arms and a leg in the extrication....

And we have some toy that repeats, 'Won't you come and play with me' all nite, even with the switch off.....I think it's a toy, or else it is hubby talking in his sleep.):Red eyes::Red eyes:

I know why God made menopause.

And yes, the n-neu-neurrronnntin works fine....what's my password again??:paperbag:

So, I bought this fantastic looking bed, with 12 storage drawers.:Zzzz: It has a book case headboard, which is wonderful for storing my pills, eye lube, eye drops, glasses...and other 'sundry' stuff that will remain unsaid....if you have Sjogren's or Sicca, you get the idea.:o

This bed also has a footboard, which in my lifetime thus far, has seemed like an extravance I could not justify. :Bow: A headboard, yes, a footboard, nope....until now, since I am old, (kinda) I figure, what the he11, I'm worth it. Thing is, this footboard must rise to the occassion of 12 storage drawers, which are 2 rows of 3 stacked on each other, bilaterally (3+3=6x2=12), which makes it pretty much mid thigh....add small fiber neuropathy....and you have 2 half dollar sized, aubergine, purple, magenta bruises on each lateral thigh....I reinforce each bruise, every time I round that corner exiting the room and one for each time I round the corner to get to my bedside....ufff....you think it would sink in after a few trips!:Doh:

The foam pipe insulation I installed on the corners looks great........it really complements the Shaker styling of the bed....that I paid a small fortune for, since it looked so nice in the catalog.

It is not so bad having to have a step stool to get into bed either....at least my clothes are not laying all over the floor any more....and my dogs have more floor space to sleep.

I have learned to mount this bed successfully, and have not fallen out and given myself a skull fracture....and maybe eventually I will learn to walk AROUND the bed, not into it....and, I swear there is a pea under that mattress somewhere. Ya think?

Me too. have switched from lyrica as I needed to up the dosage and didnt like it up there

The regimen Sheltiemom has recommended should be no problem for you to swallow if you can swallow the 100mg nerontin/gabapentin. The Meythl B12 is a chewable if you get the Jarrow Methyl B12. I use the 5000 which was recommended here. The R-liopic is a 100mg capsule and instead of thiamine I was recommended here to take 2-150 Benfotiamine. These are smaller than the neurontin. I forgot to take mine today and can't sleep even though I took a 300mg gabapentin. I had to take the supplements and after writting this will probably be able to sleep

I have a thread here if you want to search titled "CHEMO Neuropathy" where the board helped me figure out the supplement thing. I posted some results. I think I'm at about a month doing it and am seeing results.




I hate swallowing pills. I chew aspirin. I chewed antibiotics and considered chewing xloda, which was a chemo pill. I don't know why they make pills so freakin big:eek: I'm a comedy act when I take meds. I have to take a step when I swallow:D

I learned some things while having to take xloda 8 x's a day that may help. I have a harder time with hard pills as oppose to capsules. Chemo pills make you want to throw up while taking them. I cut the xloda in half with a pill cutter and took them with store bought chocolate milk. The thickness of the milk made it very easy to swallow

Chocolate milk saved me during this ordeal. It makes swallowing pills a whole lot easier and safer

I use a B12 sublingual, which I can manage.

I have to crush most supplements....there is no way I can swallow them with my esophageal status.

I am to be honest, a bit intimidated by all the supplements and how they could potentially affect me, with the autonomic neuropathy and all.

Thiamine, is likely fairly benign? Benfotamine is? And last question, is Lipoic Acid toxic at all?

I am totally on the fence on Vitamin D, since it is supposed to be BAD for autoimmune disease?? or not?? I am out in the sun all day in summer and my vit. D soars.

I can't really eat normally due to my autonomic stuff....poor appetite...nausea...If I could just eat all the good stuff I grow, i would be set. I also don't eat enough protein and I wonder about all these drinks with soy in terms of pesticide residue. I live in soy and corn country and I see all the insect like machines they use to spray, and spray and spray the fields. My grandson that I care for is on Soy formula and I cringe every time I have to mix it...there is no evidence he is lactose intolerant, and I don't see why he can't be on milk formula.

I have to go put a cold compress on my bruises, and neurontin makes me forget the foreign languages I speak. I could not even remember how to say 'thank you' in Spanish last nite. (I review my languages while I am falling asleep.)

Thanks Unstapbl, for the info about the things I'd asked Cycleops. Wasn't recommending Cycleops try them, just trying to find out if they had been tried and what the result was.

From what you say, I will definitely start this regimen. And thanks for the tip about which kind to do and dosages. Only thing the pharmacist has recommended is to take the RALA at the other end of the day from when I take levothyroxine for hypothroidism med because RALA can interfere with it.

Oh Sheltiemom, I WOULD try them if people are having positive results!

I just need small pills or liquids.... I have an esophagus that decides to clamp down like a python when something is half way down, and then whatever I ingested has to degrade right there, midway down. I have gotten some nasty problems from that. I don't understand why the docs keep giving me horse pills when they know this.

I just wonder what benfotamine is....will I have any problems with Lipoic acid?

I don't think supplements are benign. They can be very active, interact with drugs.

Sheltiemom....thanks for the lead on the nice undies! :hug: Comfort above all else!

Hi, cycleclops -

First things first - those undies I suggested are truly great or I'd not suggested them. Hope you try and are as happy as I am about your choice.

About the new bed - sounds like something from a Stephen King novel - like maybe "Cristine II?"

Secondly, yes - am aware that dietary supplements must be used with great care, especially when taking meds and/or certain other supplements. The benfotiamine form of B1 was recommended here in a reply by unstapbl(sp?) to this topic of yours, I think because it might be a superior(?) form of it rather than plain old thiamine.

The new bed is very nice....just a titch high....and of course, the luxurious footboard....ah yes, be careful what you wish for, eh?

We bought a newer home, one third the size of our old home and thought this downsize would be fairly easy since most of the kids were gone....eeesh....It has been a lot like packing for vacation and not being able to get the luggage closed. Plus the house had a few 'design' issues, and a few shortcuts, that needed repair....can we say 'money pit?':eek:

So, we endeavored to remodel things....sort of. This too shall pass. The view is great, the neighbors nice and appropriately geographically distant....and I got my small acreage....and chickens. On a good day, it's heaven....on a bad day, it's a whole lot of pain pills, and a few curse words.:o

I'm not recommending anything either. I can only say what was recommended to me or refer you to the thread. And that "I BELIEVE" it's helping.

Your correct on the Benefotiamine. The 150 mg capsules I have are less than half the size of my 300mg Gabapentin, Which I ASSUME ;) is the same size as the Neurontin. The R-Liopic is the same size

My main purpose in posting wasn't to advocate a regimen to Cyclops,as I'm not qualified, but to offer you the Chocolate milk tip and to let you know the sizes of the capsules. Also to offer empathy as I hate swallowing pills but I'm much better at it now

Mr.s D is on vacation but is very knowlegable on this stuff and can at least direct you to threads and other sources that may help you. i think your right to take seriously anything you put in your body. And to by extremely discretionary about whom you take advice from. I'm certainly not that guy LOL

Swelling is forcing me to cut back dosage
 

I am currently taking 600 mg 4x a day. Have noticed some pitting edema in the lower extremities and my fingers look like snausages. I am going to taper the Neurontin down to a dose where I can tolerate both the pain and the side effects. My doc from CC told me to start Alpha lipoic acid 600 mg a day to see if that helps with the burning / pain. What I would really like to do is stop the neurontin all together and see if it is helping at all. But then, I am too chicken to take the chance. :Hum:Going to look up some of the old posts and find the supplement regimen that alot of folks are on and see if I can go to that completely. Plus........have gained at least 10 pounds since January. Never saw that happening until BLAM.....next size up, please when I recently went shopping. :thud:

I think MRSD posted something on lipoic acid and a specific kind to take....one would have to weed thru the old posts. I would like to try it. I know my diet is not up to snuff, especially when I go into what I call 'autonomic meltdowns' where I have nausea, early saiety, constipation, increased pain and dizziness....it comes in waves and I am in one now....usually they come right after some major stressor, (just had one with my one daughter and her husband and child moving in and out of the house....and with being bestowed a 6 month old infant from another daughter who is deploying)

So, I am in a tizzy state and I don't eat well, sleep well, or nuthin'.

I get so muddled up with all the different kinds of stuff.....I almost need some one to develop a program for me with the correct supplements.

One thing I do get is sunshine Vitamin D. I am outside a lot and go into winter loaded with D.....but it declines to below normal by Spring.

My postassium is always low....as is calcium and bicarbonate....chloride and sodium are high, which seems to me like kidney issues.

Well, I have put in a full day of work already with baby and his needs....and I am pooped....looking at my lawn that needs mowing....OR, how bout this...I need a sheep or goat!!

Act II on the comedy show
 

OK Cyclelops....... I just might have you beat on the pill swallowing act. I swear I never try to take pills in public because I "look a fool." I am a closet pill swallower. I try to time my doses so NO-ONE has to / or can watch. Here is the routine....I put the pills in my mouth (of course, one at a time) take a drink, bend low at the knees and the POP-UP :rocket: real quick as tho gravity is gonna help get those pills to where they need to be. I am sure it is comical none the less. Funny thing is that I go through periods where I can swallow just fine and then all of a sudden it is as tho my esophagus has a stricture and nothing passes. I am constantly choking. What a mess...only thing I can do is laugh cuz otherwise I would spend my day crying!! Out to the garden to see what the Lord has blessed us with today!! Take care everyone. :grouphug:

Hi, cycleclops
Let me join this conversation. I get great relief from benfotiamine--I take one pill four times per day, Dr.'s Best 150 mg. ea. I also take a bunch of other supplements similar to those posted, and the only one I've had a problem with is alpha lipoic acid--it always upset my stomach even when I took it with food; however, the r-lipoic acid does not so that is my pill of choice now. Joan

So, is r-lipoic readily available? And the benfotamine.

Same here on the Alpha Liopic and I was only doing 200mg a day. No problems with the R-liopic and it's only 100mg's a day as opposed to 600. Plus the capsule is half the size. I "think" it's discussed in the thread I started which is on the next page. I'll bump it. "CHEMO NEUROPATHY"


Joano, why do you spread the Dr's Best over 4x's the day? Just curious or nosey:p depending on your perspective:D

I order most of my supplememts,including R-lipoic and Benfotiamine from Vitacost. The prices seem good and I've had no problems with customer service. I know that Mrsd has made reference to iherb, but i haven't tried them yet. Cyclops, A low profile box spring would lower the height of your bed by a few inches. We had the same problem and were quite pleased with the switch to a low profile box spring. Also, I'm right there with you with the Neurontin trial. It's my first attempt at meds, other than supplements, for my neuropathy. I've always been very sensitive to meds (I suspect I'm lacking in 2d6). I started out at 100mg tid...a little spacey at first (my husband says how could he could tell the difference;)). I just went up to 200mg tid yesterday. So far so good... I hope you do well. Take care, Liz

Oh, we are not using a box spring. it's fine...just a tad high, but worth it.

I order a lot of supplements from iHerb--their prices are very good and the service is terrific. Benfotiamine is hard to find locally, but iHerb has several brands. I take it 4x a day because I felt I was keeping the level up in my body that way--I did read MrsD's post where she said you could take it all at once or separately though, and she knows a lot more than I do about these things! I think R-lipoic acid might be harder to find locally too, but since I order about every month from iHerb, I just get it from them.

Incidentally, Saturday morning I listened to an eye doctor on the radio talkiing about various supplements for the eye, and he recommended benfotiamine for that too.

Joan

This is a bit off topic but then again so is the whole thread :)
Something I noticed while tapering down off Lyrica to neurontin. Firstly I tapered down from 300mg of Lyrica to 75mg in around a week whilst adding 300mg of neurontin. BOOM----> at these levels my neuro pain has decreased dramatically!

On 300mg of lyrica apart from the awful side effects ie zombie cant get motivated, wild ringing in the ears, dropping things, balance issues , insomnia etc etc , I also had an increase in nuero pain (burning, cramps etc) and I suspect it may have been mild swelling putting pressure on the nerves in my feet. Although my feet weren't physically swollen they felt like they were if that makes sense

Now Im not going to ramp up neurontin either. 300-600mg neurontin in the day and 75mg lyrica at night is perfect with pain at around only a 3.

my point being coming off high doses cause withdrawals which obviously effect the nerves and I nearly went back to my full dose because it was very uncomfortable in the 1st week

Morale... I wonder how many are on high doses that dont need to be? tapering down can send confusing signals so many i guess just stop the process through fear of more pain

If you are on high dose lyrica/neurontin and you still have breakthrough pain then perhaps you dont need the high dosage?

Just something i wanted to share..

I agree, I don't know if higher doses are necessarily more effective. I have found that backing down on meds for a few days, or going off for a while, makes them work better at lower doses...but there is always a withdrawal. I plan on staying at the lower doses and gutting it out....seems like I gut it out no matter how high or low a dose is. Nothing is totally effective.

Cyclelops, I could never tolerate the higher dosages of neurontin. After trying several times, I have scratched it off the list. Lyrica was also a no go... Both made me wacky and gave me edema. I looked like I had elephantitis. I have been taking AND tolerating Savella. It seems to be working. I think. I was doing better until I got a huge arthritis/autoimmune flare a week and half ago. My wrists, hands and fingers are now extremely painful and swollen. Rheumy tol me it is causing some carpal tunnel in right hand. Kind of sucks since everything requires use of HANDS. Damnit.

I went to Rheumy, he upped Humira to weekly, put me on a pred. pulse and did labs for about the hundredth time... I am sure inflammation is there but I wonder about the other things? We will see.

I hope you feel better. Oh I can type with the hunt and peck method for now.

Mere

Sooooo....
 

......how long(ish) does it take to notice if the Neurontin is going to be of help? Is this another one of those 'it-takes-about-6-8-weeks-to-get-the-full-effect' meds?

I too have recently (4 days ago) started taking Neurontin 300mg 3x/day....in the hopes I can back down from my breakthru med (Lortab).....

I had a very bad experience on the Lyrica/Amitriptyline combo my neuro put me on 3 yrs ago and have finally drifted back down to this planet we share after blowing up like a Hot Air Balloon ! ! :eek:

Since then, however, I've had an SCS implanted which takes ~ 70% of the level 8 pain away.....
So now I'm hoping this low dose Neurontin will be of benefit to the 30% of pain that continues to plague me in both legs.
I realize that Neurontin is a direct cousin of Lyrica, so I am being very leeery of this tryout........:plain:

So far, i feel nothing ..... ?

I have tried Neurontin and Lyrica several times with bad effect. When I tried the Neurontin last time, I started at a dosage of 300 mg/day. I did not notice any improvement in my pain at that dosage - even after two months time. When it was upped to 900 mg per day, I did have some small relief in pain though the side effects were pitted edema and confusion/irritability. I noticed the confusion/irritability with the smaller dosage as well. The slight improvement in pain and pitted edema occurred rather quickly after the increased dosage - perhaps within one week. Therefore, it was discontinued. Hope this helps.

I have been successfully taking Savella, 50 mg bid for three months now. I hope it continues to work without fall off. I also take Lortab - 1-4 tabs per day for pain depending on my pain level. I do have several pain issues including the SFN, dysautonomia, FMS and undifferentiated AI/arthritis disease. The pain medicine helps me to maintain a more active lifestyle, although I am still on SSD (and wish I were not). I have been on Lortab for many years. Successfully, I might add, meaning: I have not required an escalation in dosage, my liver is still functioning well without an increase in liver enzymes, and I automatically take less of the drug if I am feeling better. I am sure that I am dependent on it, but not addicted. The same doctor has prescribed it to me all along.

Mere

Very helpful!
 

Thank you Mere!
Yes indeed that was helpful......and since we've both taken Lortab for several years, I'm sure our bodies have several things in common (regarding the tolerance, etc..) so, I'm gonna really take heed to your words.

I am not holding my breath on the Neurontin tryout, but ....we'll see.... :rolleyes:

ACTUALLY, I forgot to ask this! I'm actually on the GENERIC of Neurontin (Gabapentin).
Is it to anyones' knowledge or experience that 'you get what you pay for' in regard to this med?
I've heard some people in the past claim that it is worth forking out the extra $ to get name brands on certain meds......
Just wonderin.

"I had a very bad experience on the Lyrica/Amitriptyline combo"

me too and it did this to me :thud:

neurontan for me is a pleasant compares to lyrica however I am using them as a combo small dose and good so far. Have no idea if its safe to do so and If i dont post within four weeks then Im probably dead :eek::wink:

First I heard of this. Does it work for P.N in the feet?

How Does Savella Work?
SNRIs such as Savella affect specific chemicals within the brain known as serotonin and norepinephrine. These are two of several chemicals used to send messages from one nerve cell to another.

As a message travels down a nerve, it causes the end of the cell to release serotonin or norepinephrine. The serotonin or norepinephrine enters the gap between the first nerve cell and the one next to it. When enough reaches the second nerve cell, it activates receptors on the cell, and the message continues on its way. The first cell then quickly absorbs any serotonin or norepinephrine that remains in the gap between the cells. This is called "reuptake."

Although Savella is an SNRI medication, it is not entirely clear how it works for fibromyalgia pain.

I'm glad you've found a combo that works!

You better post before FOUR weeks! :eek: If we don't hear from you within the first 48 hrs, you are considered 'missing in cyberspace'.......after the next couple of days, you'll be considered a possible cyber-foul play victim.....then we send our "Men in Black" aka (professional penquins) with the rest of the cyber search squad........it just wouldn't be good man.
Just post.
:)

Cool! I've never responded to my OWN quote before! :)
How vain can a person possibly get??

But since I can't answer my own question within thy said quote, I'll leave it open for my desperate plea for answers of wisdom

All you can do is try... I hope it helps you. I do read posts where it has been extremely helpful to some... The first time I took Neurontin was years ago when it first came on the market and it was Brand. On the other two trials, I was prescribed Gabapentin (the generic form of neurontin). It didn't seem to make a difference one way or the other in my experience.

Mere

I am on generic because it is all my cheap insurer lets me have.....I can tell you that on opiates, it makes a huge difference. Generics can be 20% off on active ingredients....THAT makes a difference.

With the vicodin, if you have generic and it is 20% less, that is one extra pill per day for me.....so, I am down a pill a day....in one month that is over a week short....ufff.....what can ya say.

I believe you get what you pay for.

I had no idea that narcotics could vary that much! When you are in pain, that percentage could be huge. Can that 20% variation be on the plus side as well?

Mere

Wow!
 

Now THAT's an eye-opener!! Goood point!
I'm gonna ask for the Brand name (Lortab) instead of the Hydrocodone I'm currently taking. I will do that on my next refill.

I hope I'm not thinking bassackward here.....Lortab is Brand, right?
Hydrocodone is the Generic......yes?

Very good point Cy, this could make a HUGE difference in the 'tolerance' issue, which drove me to want to try this Neurontin..... I feel i go thru them faster than I should. If I had NAMEbrand, that 20% could prove to be all the difference in the world!!

Mere? Gotta ask you. What's the status of your Thyroid?
 

I ask, only in that after 6 months w/my pn? My hypothyroid, shut down! And the biggest symptom was the super edema in my legs and feet!
When your feet blow up 3-4 TIMES your shoe size? It's definitely a problem, AND definitely caused damages to the vascular and other systems in the legs and feet.
Ultimately, it took 4 years to get the Hashimotos' diagnosis?? Only because my thyroid #'s were going up/down/up continually. And, to treat & stabilize these #'s takes lots longer than we'd like...ergo some damages. [This about 10-15 years after the Hypo-T was diagnosed]
It SHOULD be something just to check off the 'list'? IF you can! It's a matter of 'peace of mind' to know that 'THIS' isn't a culprit.
Further? My docs do request non-generics for the thyroid! They don't believe that the generics are as well controlled quality-wise as they should be. Some docs simply go with the 'flow' so's they don't get 'targeted' about pain meds...sad but true fact of life these days?
It's not hard to find out where a med is 'produced'. It's sounding like I'm biased in some instances? But, There ARE times when quality controls should override costs! It's up to your doc to specify 'brand as named' and not accept generics. However? You get to pay the difference-so ultimately it's your choice. And, at times it's a BIG $ difference!
And, you can always 'appeal' the Insurance Co's Decisions...I'll bet you can find heaps of facts about particular meds that clearly indicate that some generics are not equal to the 'real' thing! Just check out the FDA! It's time consuming? But, it's also educational from all the viewpoints: You-the patient; The Docs; The Pharmacists; and the 'Pharmacy Industry'!
The wrangling over where the 'commas' are placed? Well, it turns your hair GRAY! Not, Grey.
:hug::hug::hug:'s - j

I believe we had a thread on here regarding generics and that active ingredients could vary by 20% in either direction....altho, the chances of getting MORE of something you paid less for, are, let's just say, unlikely?

I am thinking too, that I will ask for Vicodin. I believe Lortab is a brand name as well....just less familiar with that.

Lortab and Vicoden are the same drug... hydrocodone cut with aceteminophen - just different pharmaceuticals.

Jeepers.....it got cool here and reminds me of Fall......I don't like the serious heat, but, Fall?? Noooooo, not yet! I am not summered out yet! I haven't done half of the FUN things! Like hike on my bike trail or visit my favorite state park!

Cy
 

Howzit goin with your Neurontin so far?

For me, so far i feel absolutely NOTHING!!!! Nada! Not even fogginess (other than my normal genetic lack of intellectual fortitude :) )

No sleepiness, or any of the other potential side-effects. I tried taking 600mg instead of 300mg per dose for a few days and still NOTHING.

Have I been dooped and am getting placebo ? Or is my tolerance so off the charts that my body doesn't recognize ANY form of pain med unless it has the extra power punch requiring the DEA overlords scrutinization.....