Please help! what were your side effects?
 

Hello,

I am new to this. I have extreme burning, tingling, prickling and twitching all over my body. I am very nervous about medication (all over body twitching and restless legs started after a medication for another reason and HAS NOT STOPPED FOR A YEAR). However, I am in excruciating pain all over. I need some relief.

When I read about medications on here many people state " I had to stop due to horrible side effects" but nobody states what those were. I feel like at this point I could put up with a lot if it took away the pain. What I can't cope with is some of the more serious ones like ataxia, akasthesia, and movement disorders. Has anybody experienced horrible permanent side effects from Elavil, nortryptiline , lyrica or gabapentin?

Which medication seems to be the most helpful?
 

Hello,

Which medication seems to be the most helpful for people? I know it differs for everybody but I was just wondering if anybody has noticed a trend about which med works more often that not.

New here! Why do people stop their medication?
 

Hello,

I have read many posts about people stopping their medication even though they say it was helping them. why is that? did the pain get better? I'm in sooo much pain right now I can't imagine stopping something that helped. I am not on medication right now but the pain is unbearable and I really need to try something. I am already taking supplements but they don't seem to be helping (r-lipoic acid, "nerve fix", vitamin e, vitamin c, vitamin d) I was taking b12 but my dr said my levels were very high so to stop that.

Does the pain get better? It's been about 6 months of pain and it's only getting worse. I really need to know if it gets better for most people or only worse?

Welcome canagirl. :Wave-Hello:

Welcome....
As for me the reason I stopped prior medication because the side effects were too much to handle. For me the pain wasn't gone either, just different. But as my conditions worsened I had to find something to calm the flames. That's me anyway...:grouphug:

Everyone is very, very different, and we look for commonalities here to try and help each other. Some of us fall into the diabetic neuropathy category, some hereditary, some toxicity, and many, many idiopathic. It may as well be idiosyncratic because it certainly is!
If you could tell us more about your symptoms, their duration, any instigating causes- medications, surgeries, damaged discs, etc., anything that makes it worse, and any diagnostic testing you have had done we might be able to help.
You will find knowledge, empathy, and kindness here.
Medications are generally discarded when they do more harm than good. Neuropathy is hard to treat and the things which can touch the pain carry heavy side effects. Just finding a combination of medications which may provide a 40 or 50% reduction in pain levels can take years of experimenting.
If you have a progressive condition, then it is reasonable to assume that the pain will get worse. On the other hand there is a certain amount of getting habituated to pain- sensations that are unusual and distracting like numbness and pins and needles become the new normal. Sometimes you learn what foods or activities make things worse, so there is an up and down process.
Welcome to the forum and please tell us more about yourself.

thanks for the responses.

I have a long story. I took a medication that caused body wide jerking and twitching that never stops (literally happens 100 times a minute all over my body internally). On my quest to help myself (cus drs said I had anxiety, which I have never had and I had NO stress in life) I saw a naturapath that ran a microcurrent of electricity through me. She said that it's supposed to release toxins from cells so it would flush out any residual medication. Big mistake. By the time I got home I had tingling, prickling and severe burning all over my body. Over time the burning subsided a bit. However, I still had all those symptoms. Not having learned from my mistake I kept searching for help. I turned to an acupuncturist. after 8 sessions I stopped b/c the intense burning returned along with severe throbbing in the areas where needles were inserted. That was two months ago. I know have intense throbbing, burning, prickling, tingling, twitching, jerking and electrical feelings all over my body.

Tests
head mri
neck mri
total back mri
eeg
emg - carpal tunnel in right hand
bloodwork - (off the top of my head) vitamin d, vitamin b12, ana, copper, igg iga, magnesiusm, calcium, potassium, glucose, lyme, female hormones, testosterone, tsh, t3, t4, and many more I can't remember now
Urnine - norepinephrine, cortisol

EVERYTHING COMES BACK NORMAL

I am in excruciating pain, head to toe. I need help....I cry all day, everyday. Qaulity of life is zero. Nobody understands.

also, what are the horrible side effects people experience and on what medications? I can put up with a lot of side effects if they take away the pain. What I'm worried about are the serious permanent effects like, akasthisea, ataxia, movement disorders... Anybody experience anything really bad like that?

fyi - im only 30

You can use the search tool to find the various medications you are considering to find past posts on side effects or other issues.
http://neurotalk.psychcentral.com/search.php

We have medications forum also..
http://neurotalk.psychcentral.com/forum72.html

Hi canagirl
I have merged all your separate threads into this one as it makes it much easier for others to reply to the one topic, especially as the questions are related.

It looks like you need to get a skin biopsy for small fiber neuropathy to rule that out.

When I was diagnosed with idiopathic SFN last year, my neuro prescribed a low dose of gabapentin to see if it might help with symptoms. After three months, I wasn't convinced it was helping, so I had a choice of either increasing the dosage or stopping. I opted to stop primarily because I'd rather not take any medication long-term if I don't have to.

While my symptoms have improved some, I still have a lot of discomfort with some days worse than others, but I'm just trying to cope with it. If worse comes to worse, I'll turn to cannabis which is what a lot of people here have reported helps tremendously.

I thought small fiber neuropathy as well (b/c what else can cause all these symtpoms?!!!?) However, the neurologist doesn't feel I have this b/c her clinical testing shows no evidence. I'm trying to get the test done on my own but it's really expensive $2000US dollars. Not only that, this test isn't performed here in Canada, there are twp dr's that will perform the biopsy and send it to the US but trying to get in is impossible.

Has anyone else been diagnosed with SFN when their neurologist said "I don't think so"?

Please help a struggling newbie! SFN & Massage
 

Hi all,

Does massage cause extreme burning pain for anyone? I thought it was supposed to promote blood circulation and healing so I gave it a try. During the massage I felt great. However, all night and all day today I have had EXTREME burning. The last time I tried to do some light stretching this happened as well but not to this degree. What's going on?

Deep message is not for me. Talk about burning. Not certain that any kind of message, except very very light, would be okay for me. Just me.

Yes, I am no longer able to tolerate massage and I have SFN.

Hope it gets better for you.

Yes, mine said my symptoms were skin disturbances and alluded to me being anxiety ridden and causing my symptoms. An internist luckily FINALLY listened and did the skin biopsy, and now there is a little difference in the way I am treated.

I have progressed and now have autonomic involvement too.

Hope you can get someone to listen to you soon.

Please tell me Sfn due to trauma can get better. If so, how long?
 

Does sfn due to trauma get better? If so, how long? It's been about 6 minths and it's only worse ( horribly). Family thinks there is no way it could get this bad that quickly. I don't know hat to do. Please, veterans I'm in desperate need of advice on how to help myself

Nortryptiline effective? Bad side effects? Troubles getting off ?
 

Hello,

My dr would like to try nortryptiline. I need relief from the extreme body wide burning. I'm very nervous... Is it effective ? Anybody have bad side effects? If so, what were they? Any troubles getting off? Please respond.... Thanks so muxh

Absolutely. When my symptoms first came on, the came on hard. I would have delayed pain and burning after I did just about anything. It was so scary and confusing that I didn't know what to think.

A chiro did active release therapy on my leg (when we were still trying to figure out my issues at onset) and it landed me in the ER a few days later. I would get my hair cut and colored and I would wake up with burning on the back of my head. I had reactions to massages so I had to stop. I remember not sleeping for several days at a time due to all this pain. I can say that it was the worst time period of my life.

You said when this first came on it was at its worst. Has it gotten better? What are doing for pain relief?

I'm one year in and still struggling. I'm on 2400 mg of gabapentin and 10 mg nortriptyline. But when my symptoms first came on, I could barely work and almost went on disability. There was burning all over my body - especially face, back of my head, neck, and arms. My lower half is impacted as well.

Now, my body pretty much burns and buzzes every single day. But at least I can say that I sleep. The burning is very hard to deal with but it's not like it was at onset where the pain was surreal. I really have to watch the temperature of the showers that I take because they can cause me to burn later in the day.

Any bad side effects from nortriptiline? Which one is most effective for the burning pain? Have u ever tried to get off of either? Tia!

Literally head to toe burning 24/7!! Anybody else have this? Am I alone?
 

I have head to toe burnin and prickling 24/7 it never stops. I keep reading about people using creams for relief but how do put cream ALL over u! If anybody else has this type of burning what do u for pain relief? Please please respond. I'm desperate... I need help. I can't handle this much longer. Please don't just read and move on. I beg u

You cannot use the medicated compounded creams all over your body-- you are correct in that.

Typically doctors give gabapentin or Lyrica for this type of thing.

But you need to calm down too... as anxiety fuels the sensations.

Try soaking in an epsom salt bath... this provides magnesium systemically absorbed and relaxes as well. The magnesium will block some of the pain receptors. Don't over do it, and DO NOT use hot water. If you are using a hot tub, heating pad or steam room, stop it...heat makes the nerves more active.
Use about 6oz of epsom in a bathtub of luke warm water...soak for at least 20minutes to a 1/2 hr.

Hi there,

I have sfn, I am still being investigated for the cause but mine could be linked to metronidazole. I am on amitriptaline and lyrica. I had the skin biopsy by a professor in London. I didn't have pain at the start of mine,it must have been there as I had funny feeling like water drops all over my skin when out in the heat. when I was told by the neuro that it was sfn I googled it and completely panicked, after that the burning started from head to toe, I tried gabapentin but it didn't work. the other two drugs are working OK at the moment touch wood. if I panic it makes it ten times worse.

Do you know what caused your sfn?

I hope you get some relief soon.

LouLou

I've been on it over 2 years, and have more or less settled on 50mg daily. Initially it made me very jittery & I had to delay upping my dose. It kind of makes me feel run down, and constipates me a bit, but I consider it worth the relief. I think it's probably one of the easier drugs to get off of, but you'd still have to taper down, but I haven't tried to do so. It relieved the general burning covering the soles on both of my feet. I also have a different burning feeling on the sole of my left foot about the size of a quarter, which is somewhat less bothersome to me that the drug doesn't touch, at least at my present dosage.

I'd say go for it. It shouldn't take too long to get some results, but would say it took me about 2 months to receive maximum benefit from a particular dosage. My neurologist says he has people on it taking up to 150mg daily, which is regular antidepressant dosage.

I'd be more worried about getting off one of the newer drugs, such as Lyrica, Cymbalta, & Effexor. More habit forming than Nortriptylene, even in a short time.

I am also wondering what the lesser evils are in drug taking. What is the opinion on nortriptylene vs lyrica for side effects? I was told that lyrica was safer? I tend to believe peoples experiences more than what the docs say though.

Pain Management
 

If you are in a situation that demands immediate attention and you are not giving in to a panicked state of mind, get yourself to pain management. If however you think that you can take the time to try other things first, I would look to alter your carbohydrate intake. It seems whether diabetic or not that glucose control helps, not all, but many. Quit potatoes,flour gravies,any form of refined sugar(candy) snacks. Lean toward boiled or broiled whatever, not coated and deep fried. If you eat bread look for 100% whole grain and limit even that. My flare-ups are worst on potato salad. You might start a journal and when you do and try things write it in your diary. Include a number scale for your pain, dates, you get the idea. Sleep is essential, I have taken pills for sleep,pain and am still taking sleep aid but have withdrawn from two different pain pills. Don't agonize about taking pain meds, you can always withdraw later. Pain can drive people to depression so get help if your out of time. Hydrocodone will help with pain but must go to pain Dr. for that these days. Mixed reviews for Gabapentin and Lyrica some say it helps, it did not help me. I hope that you can grit your teeth and do what you have to do. If you can look around and count a blessing or two it may help with the anxiety and anger while you fight. Good Luck, Ken in Texas.

Nortriptiline makes me dry but helps with my sleep. I did stop taking it for the past several weeks and I've felt awful, so I started taking it again.

I also stopped taking gabapentin 2 months after the onset of my symptoms. That is when I had a variety of doctors trying to tell me that I had fibro. What a joke! Stopping the medication during that time was not very smart. I woke up feeling like I couldn't move and there was a bed of nails from behind my eyeball down my spine all the way to my left foot.

Trauma
 

My PN symptoms started three days after a car wreck in which I helped sweep up the glass and refused to go to hospital. It is 2yrs gone by now and I am better. Seems some of folks have an acute phase. My journey included muscle wasting and motor function. If your improvement is dependent upon nerve regeneration, that takes time. I am not well versed in SFN but wanted to tell you that it ain't over until its over. Good Luck, Ken in Texas.

Sorry
 

:hug: I KNOW you are desperate....hang in there....I can only say experiment. If you can try and distract yourself even for a few minutes....I am considering magnesium oil because my CRPS is spreading like wild fire....I wish I could wave a magic wand and help ALL of us...it really isn't fair...but I can say...get :mad: out of your system....realize this is NOT going away; then try your best at finding help for the new you...you are in good hands...PLEASE PLEASE don't give up.....:grouphug:

Balancing act
 

I quit Gabapentin because it didnt help my pain. Side effects were not that bad, hunger, blurry eyes, occasional mental stumble, but if it doesn't help why take it. I was only on 900 mg/d, some go to 1800+/d and I knew my Dr would just up the dosage. I know you are not on anything yet but I had no trouble getting off Gaba as I weaned down slowly. Heard that Cymbalta must be weaned down slowly. I quit Hydrocodone cold turkey and it was strange for about 48 hrs. My hydrocodone was for lumbar, hip, knee pain. I will try Gaba again at a higher dose if I need relief. For many it comes down to balancing relief vs. side effects. No stories I remember as horrible AND permanent. Good Luck, Ken in Texas.

I've found from my own research that folks can become dependent or addicted to Lyrica even in a very short time. I believe it's not available in the US in generic form (I'm sure someone will let us know if I'm wrong), and expensive.

I personally would only consider the newer anti-depressants or anti-convulsants, which may quickly cause dependency, only after the older Tri-cyclic antidepressants or Gabapentin are found to be not helpful. If you check the patient reviews on WebMD for the various drugs, I think you'll find that the patient satisfaction for drugs used for neuropathic pain relief are roughly the same for most. My new PC Dr claims he's had better luck, in his experience, with Cymbalta, but I'm personally leery of it.

Hydration
 

Sounds absurd but I am finally getting relief within only 4 days from making certain I drink a minimum of 8 glasses of water throughout the day . Believe it or not my PAIN is lessening daily . Read up on Nerves need for water .

I contracted Shingles 7/13 which evolved into Post Herpetic Neuralgia , upper branch of Trigeminal Nerve above the eye one side . The Burning , stabbing , stinging , itching was horror , A small Lidoderm Patch enabled me to sleep somewhat along with a cool ( not cold ) water bag situated on the affected areas , more relief . My Dr. Rx'd Lyrica ( NO GOOD FOR ME ) , mood swings , loss of balance , abstract thoughts ( steer clear of that one $$$ too ) I stumbled across the " body's need for WATER " through a random search , nerves , Myelin Sheath , Brain 85% Water all need the daily required amount of WATER . Believe or not after continuous pain daily / nightly / sporadically it has Diminished greatly in just 4 days , no more coffee , sodas etc. strictly the daily required amount of water has HELPED ME A GREAT DEAL , 1 persons opinion , it can't hurt , water that is but DEHYDRATION sure can .

when did you feel like it stopped getting worse and started getting better?

Hi Mrs D.

I have tried the Epsom salt baths they don't seem to do anything for me...:(
Do you know of homeopathic remedies that have worked for anybody like apis, Arsenicum, Cimicifuga, Aconite, Hypericum etc.

Also what is your opinion on nortyptiline vs. gabapentin or lyrica?



Thanks

Were you in a car accident? How did it all start?