Chills on one side of my body

Hi everyone,

I keep getting chills on the right side of my body when I'm not cold. It's the same side as my TN. Do any of you experience this? I've googled it, and what I have read has pointed to a neurological anomaly. Could this be from the TN? Or from the meds? I'm on 1800 mg of gabepentin (which isn't controlling the pain).

Beth

"Chills" is listed as a side effect of gabapentin. Seems weird that it is only on one side though. Hate when there are side effects but no pain relief :(

Hi Beth,

Gabapentin isn't a pain med in the way you would think of pain meds. It is a med that is used to relieve neuropathy. The med it's self is an anti-convulsant, but is helpful in relieving nerve pain. I would address this issue with your doctor, as that is alot of gabapentin with no relief. But don't just stop taking it, let your physician direct you on what to do.

Joanie

Not Again - I didn't even think that it might be a side effect of gabepentin. I'll have to check into that.

Joanie - It feels like a lot of gabepentin, but I've seen people on here who take twice the amount. I can't even fathom that. I'll definitely check with my neurologist to see if she can give me something for the bad days.

Would you mind posting the link you found?

Are they chills or does it feel like what you imagine the opposite of numb would feel like? It's called Paresthesia if so. I also find my skin to be hypersensitive to anything touching it when this is acting up. I refer to it as my skin is lighting up. I can't describe it any other way.

2 Years Ago, I developed TN on my left side. 8 Months ago, I started having issues all along my left side including my seat area, leg, foot and arm. I've had skin test done and identified the Paresthesia as Small Fiber Neuropathy.

For me, this was important because the Small Fibers share a cell type with the small fibers coming off of the Trigeminal Nerves. I'm still trying to find someone who has a similar type of issue as I want to understand if there is a connection.


Thanks,
Chance

Hi Chance,

When I looked up gabepentin, it just said one of the side effects is chills. But this doesn't quite feel like chills. It feels like the raised hair sensation I get just before I get a chill with goose bumps. I'm going to mention it to my neurologist. I read a bit about what you have, and this doesn't sound like small fiber neuralgia.

I'm sorry you're battling both diseases. That really stinks.

Hi Beth. For the last 4 years, I've eaten 1800 mg of gabapentin .600mg 3 x a day with chills but in combination with 200 mg..100 2x a day. and oxycodone ..5mg when necessary. I usually drop it 2 x a day..This cocktail has been mostly successful. However, as we know,"different meds for different heads"..Keep trying. For many, it takes time to find the right stuff..hang in there

I suffer the same just before a flare up on the left side which is where I hv ATN.

I meant to say " Without chills"

Hi Beth,

yeh, I get chills too, and they were much worse when I was on gabapentin. I went up to 3600 of gabapentin with no relief, so I've come off it now completely and am having to manage drug free, as I was getting all the side effects, and no relief, no matter what I tried!

I agree on the combination effect of drugs you can tolerate. I have ATN and atypical GN. The flare ups with the constant 24/7 pain are being managed better for me using a combination of gabapentin 600 mg. 3x, baclofen 10 mg. 4x and yes I do take a low dose of percocet 7.5 mg. 3x prescribed by my pain doc. I asked for an increase in the percocet as you do build tolerance and my pain doc refused to up the short acting pain reliever and put me on time-released morphine. My neuro added amitryptiline 50 mg. at bedtime about 6 months age and that gave me more pain relief or episodes of the GN and the increased intensity of the ATN. So doing better with the ear pain with GN for sure, the ATN is more stubborn. I am looking into PNS, peripheral nerve stimulation for my face pain. All my meds are lower dosages although I do get a look sometimes when I start giving them to a nurse with a new doctor. I am 58, and take 4 other meds unrelated to pain. I have been treated on a mother load of narcotics going through one failed back surgery after another so I think I am on about 1/3 of what was prescribed in my past.

Definitely finding the right combination is hard, a trial and error approach. I failed on tegretol, lyrica and cymbalta. I don't get chills from my gabapentin. If that is more bothersome than the TN I would not take it just like the side effects of the ones I failed on were worse than my ATN. Sharon

Hi Chance

I have been diagnosed with small fiber neuropathy. I have had hyper-sensitivity in my arms for approximately 10 years. I can only wear very soft fabrics and sleep sitting up with my arms on soft pillows. 3 years ago I was finally diagnosed wth sjogren's syndrome, which causes small fiber neuropathy. My TN was diagnosed shortly after that. Now my legs and feet are also hyper-sensitive. Many days the only thing I can wear is satin pajamas. I have become the female Hugh Hephner! :)

I also take 1800-2400 mg of Neurtontin daily. I've been on it for over a decade now. I've gottten used to the side effects. Unfortunately, at this point I would take eye of newt if it would help! I don't get chills on one side but I do get one-sided pain. My docs can't explain it, just say it is an anomoly of how the small fiber neuropathy manifests in me. I've always liked to be an individual. :)

I know it's scary but sometimes there just won't be an answer for the symptoms we feel. Neuropathies are very individual disorders.

I hope things get better and you can find some relief! There are many other meds to try. Good luck and keep me posted.

Take care,

Bels

NoChance said:

Would you mind posting the link you found?

Are they chills or does it feel like what you imagine the opposite of numb would feel like? It's called Paresthesia if so. I also find my skin to be hypersensitive to anything touching it when this is acting up. I refer to it as my skin is lighting up. I can't describe it any other way.

2 Years Ago, I developed TN on my left side. 8 Months ago, I started having issues all along my left side including my seat area, leg, foot and arm. I've had skin test done and identified the Paresthesia as Small Fiber Neuropathy.

For me, this was important because the Small Fibers share a cell type with the small fibers coming off of the Trigeminal Nerves. I'm still trying to find someone who has a similar type of issue as I want to understand if there is a connection.


Thanks,
Chance

Hi SF Bill,

I have a question about the oxycodone. How long have you been taking it? I recently asked my neuro for a pain med for the really bad days. She said that narcotics won't work for TN. I told her my dilaudid worked, it just made me vomit so I can't take it anymore. But she refused to give it to me. Because of the new studies about addiction. I was very angry . But afraid to say anything because I didn't want to be labeled a drug-seeker. I have never taken oxy but it is the only narcotic left that I haven't tried. All others make me sick. I would at least like to try it. I just had the worst pain day of my life and am very frightened that I could have another. She just piled a bunch of meds on me to prevent another attack like that. I kind of understand her reasoning but mine is why take 3 daily meds that make me feel ill every day if I could take one narcotic on the terrible day that would make me feel better? Up until now I have liked her but this is making me think I might have to go doc shopping again. :( Has your doc mentioned these new studies?

Thanks for the help and take care,

Bels

SF Bill said:

Hi Beth. For the last 4 years, I've eaten 1800 mg of gabapentin .600mg 3 x a day with chills but in combination with 200 mg..100 2x a day. and oxycodone ..5mg when necessary. I usually drop it 2 x a day..This cocktail has been mostly successful. However, as we know,"different meds for different heads"..Keep trying. For many, it takes time to find the right stuff..hang in there

I do understand what you are feeling. I have a type of spinal cord injury called tethered cord at T-9 caused by a cyst in 1999. Attempts were made to detether which is releasing my spinal cord from being scarred down. The stretching effect causes me to have neuropathy in my legs, lower extremities and feet. They tingle, burn, feel numb, ache and swell and also I am hypersensitive to material from clothing touching them. It is almost like a diabetic neuropathy too because I do not heal from sores I have gotten on my feet. I got sores caused by shoes that were rubbing my bunions and 2x I had to go on IV antibiotics, the second time I had to have surgery to remove a bunion and bone that left a baby toe with nerve injury, it is not painful, just flops at the side of my foot.

I am getting up in my years dealing with chronic pain from failed back surgery and so many things I have done surgically have caused me a domino effect. So at 58 I have so many strange feelings from nerves that won't behave it is not a subject of conversation with anyone. Only on this support group site we can vent and understand all these strange things that can go on. I don't wear anything when I rest except a t-shirt and underpants. Sometimes when I cover up with a blanket I do not like the feeling I get on my legs which is a burning sensation.

So many here with TN can't brush their teeth, comb their hair, wash their face or eat without causing the stabbing pain. I can say sometimes the same but I like to pull my hair gently to relieve spasms in my temples from tmj but that sometimes aggravates the ATN.

In general I think most of us that suffer from cranial neuralgias are hypersensitive. I always read someone's post with an open mind. There are so many symptoms we all share and sharing everything and anything that helps is where we do it, right here. Doctors listen with deaf ears sometimes only because they don't know what to do. Usually at the nerve injury level there is nothing that can be done. Sharon

Bels, I am seeing a pain management doctor that prescribes narcotics for me. I have other chronic pain from 7 plus failed back surgeries, a spinal cord injury, nerve injury, tmj, chronic cervical pain fused 3 levels, thoracic pain herniated disc. So for almost 3 years I was only taking tramadol, then the cervical, tmj, ATN, aytpcial GN started to cause me pain that would not allow me to rest. I was started on 5 mg. of percocet 2x and that has been increased plus they added a time released morphine. I am understanding he is prescribing me narcotics for the flare ups of this ATN and atypical GN. Try some pain management doctors. I think the percocet which has oxycodone in it with tylenol takes the edge off my facial pain. My pain doc does not like to increase short acting narcotics which is why he added the time released morphine to prevent getting to those 7 to 10's in pain. I understand there are studies out that disclaim the effectiveness of narcotics on neuropathic pain which TN, ATN and all the cranial neuralgias exhibit this type of pain but there are also lots of research material on line that does validate the use of narcotics.

If you throb and ache from all the stabbing pain a narcotic will help that. So will tylenol and a non-steriodal taken with the narcotic. I don't get the stabbing pain but I do have a lot of other things going on requiring some narcotic. But honestly, I believe my pain doc is very aware we are using narcotics to help my ATN and GN. It does subdue it most of the time, it has a lasting effect for me if I also rest and take my mind somewhere else, read a book, watch some TV. If you are working I feel for you. I am totally disabled from the failed back surgery. I need more surgery for my lumbar spine again this month.

Neurologists will not prescribe narcotics. Mine only prescribed a cocktail of meds that I can tolerate and they are somewhat helpful to moderately helpful. Side effects were very harsh on me with tegretol, lyrica and cymbalta. Finding the right combination is a trial and error and can take a neuro over a year to get you feeling better. The addition of a low dose of narcotic is helpful and percocet I have read is the most helpful.

Find a pain doc, simply state your neuro has not been able to find a combination of meds that are helpful and you want to try a narcotic. You do get tolerant, that is the big issue surrounding these meds. Good luck to you and you are not a "drug seeker". You are like so many of us here just wanting a few hours maybe in a bad day to get away from the pain. Sharon

Last summer I went through a spell where I would get chilled for no reason at all. It actually scared me at the time because there were some other troubling symptoms (head jolt when laying down, etc). I agree with Granny that we become hypersensitive and not in a bad way, we are just much more aware of little changes. Unfortunately, with my neurontin brain, I cannot remember how I felt later to recount it to the doctor so there are dozens and dozens of little notes all over my house where I write down what I am feeling at that moment.

Thank you for starting this thread, I anticipate some interesting responses. I do know several of us have "issues" with the entire side of our body on the tn side.

Hi Bels - the narcotics are definitely part of the “cocktail” that keeps my pain in check. I had been selfconcious about the norco I take but during a bad flare up my primary care dr told me without a certain level in my system what I was taking did no good. He told me to sustain a level and not just take it once in a while. Since doing that I’ve had more consistant relief.

We are all talking about all of the meds we take, so I’m curious … how does everyone work with all of the meds in our system, as well as the pain?

I quit my job a few months ago (for reasons not related to TN), and I can’t imagine being able to work a full-time, regular job. I have bad pain days a couple of days a week, and those just knock me down.

Beth

Hello,

Took the same med for several years, no chills. There are so many conditions that go on with us, which have no answers. The list is long, but we have to be careful not to complain about every single thing our body endures. I have pain it seems everywhere, so you have to reach the point in your life that you don't complain about every ache and pain. Suffering is hard. We have a God who hears us, and I find great peace in that I'm not alone with this horrible pain.

Hi Beth,

I am so glad you wrote. I have that same thing, just on the TN side. It happens sometimes without any known cause, and it often happens if there is a light touch to my leg on that side. And the chills are just on that side. It is so weird. I have this and I am not on the same meds you are. I tried tegretol and gabapentin but had horrible brain fog. I am now only taking generic Cymbalta. It worked at first but I am having break through pain. So far it isn't bad, but yesterday it was pretty constant. I should say that I think I have ATN. I am very interested in knowing what causes this, or if it is something I should mention at my next neuro appointment, which isn't until July.