Side Affects List

General General TN & GPN (Old Site)
1

I thought it might be a good idea and interesting for us to start a list of side affect we have experienced from our medications and procedures, and if there was an out come. Maybe we can place this list in area to add to and for members to look up when changing medications.

So I’ll start

Carbamazepine; turned into a zombie, sleeping non stop, nausea, liver and kidney functions went down dangerously. Medication was stopped after month and half due liver and kidney levels, took pain levels down but could not continue medications

OxyConton; serious migraine, went away after two days of starting medication. Help bring pain level down medication was stopped because doctor did not think opioids were to be used for TN patients.

Cymbalta; night terrors aka exterm nightmares, medication was stopped did not help pain or my mood just scared the holy crud outta of me at night. Medication was stopped because of the above.

Oxycarbamazipine; cold sweat, skin hurt to touch, stomach pain. Vomiting, no appetite, dizzy, nausea, skin rash, allergic reaction after a week and half to weeks; medication stopped due to allergic reaction a skin rash ( thought to be the start of tens disease). Did stop pain but could not tolerate and continue medication.

balcofen; hallucinations started two weeks after medication started, heart racing, sleepiness; medication weaned off due to hallucinations. Did not help pain for me:(

Lyrica; sleepiness, dizzy, nausea, piting edema, shakes, thoughts foggy, trouble finding words and trouble typing/writing coherently at times. Brings pain level down and stops the shock like pains

2

Gabapentin - took all of the pain away, also irritated my already bad GI tract so much I had to stop it.

Lyrica - helps, makes me unable to find words or put sentences together. I sleep a lot at night and am groggy in the morning. Feels like the Alzheimers that runs in my family has an easy way into my life.

3

Gabapentin ~ makes me very prone to infection. Also makes me fairground. Could fall asleep on a tightrope, need to keep busy to stay awake.Brain fog and poor memory.

Tegretol ~ causes sounds to be perceived at a different pitch. Sleepiness. Poor word retrieval. Brain fog and poor memory.

4

Neurontin (900 mg/day) - slept a lot (sometimes 12 hours in a row when I could), depression, didn't help with the pain, had to wean off after 1.5 months

Lyrica (150 mg/day) - helps with the pain, difficulties remembering words, tiredness, sleepiness, vivid dreams, body retains water especially in the legs - this was, however, helped by a regular massage. Currently can't do without this medication.

5

Gabapentin - helped with TN pain, caused joint pain, constantly yawning & lethargy, confusion & poor memory if taking more than 100 mg

Neurontin - Constant horrible taste in my mouth, extreme digestive issues, poor word retrieval, worked well for TN pain though

Lamictal - extreme confusion, stuttering & poor word retrieval, night terrors and nervous dreams

Vimpat - no major side effects thusfar, but I’m not sure if it is helping with the pain (increase in cold weather and having colds makes it hard to tell)

Gralise - extreme depression, could sleep for days

Disepramine - used as a substitue for Neurontin, works well for pain, but causes extreme hunger (currently only taking 75 mg), weight gain

6

As a new member to this site, I am so very grateful to finally have contact with people who understand the struggle with these side effects. Just had to add that…such a relief. People look at me like I am crazy when I try to explain how complicated it is to try and treat this condition, and how the side effects can be more debilitating than the actual problem sometimes.

7

Oh, I forgot to add WEIGHT GAIN with Lyrica.

8

An afterthough. Up there ^^where I listed Neurontin and the side effects I was actually describing the side effects of Nortryptiline. Also, the disepramine that is listed is a substitue for the Nortryptiline, rather than Neurontin as i listed. I DID try Neurontin, but I could not tolerate it during the day b/c of the confusion it caused. I tried Gralise (a new time released Neurontin) b/c my neurologist said that perhaps keeping a steady level of it in my system would help. (?) The side effects of Gralise are listed above.

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Tegretol: drowsiness, hand jerking, Involuntary hand and jaw movement, pale skin, weight gain, vivid dreams, extreme poor sense of judgement, lack of concentration, forgetful, loss of memory, developed underactive thyrod since been on high dosage of tegretol (maybe a coindince), loss of hair, loss of labido (although the pain puts a stop to everything!) emotions are hightened.

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you can also go to askapatient.com and look up the side effects too

11

I have had tremendous relief with Neurontin. My side effects have been: Mind fog and weariness in the afternoon,

Tegretal gave me vertigo and I had to stop taking.

12

I wouldn't say they are MORE debilitating but...they really do take away our ability to function in the world.



Ash Morton said:

As a new member to this site, I am so very grateful to finally have contact with people who understand the struggle with these side effects. Just had to add that...such a relief. People look at me like I am crazy when I try to explain how complicated it is to try and treat this condition, and how the side effects can be more debilitating than the actual problem sometimes.
13

I dunno. When I was taking lamictal I would come out of the bathroom at work and have to stop and think because I would forget how to get back to my office. At least when I’m hurting I’m still not lost. :wink: (i kid)

14

Ha ha Well that is true!!! I tell my adult kids, "no forest gump jokes!"

Ash Morton said:

I dunno. When I was taking lamictal I would come out of the bathroom at work and have to stop and think because I would forget how to get back to my office. At least when I'm hurting I'm still not lost. ;) (i kid)
15

Ugh I figured another side effect from Lyrica (least in pretty sure it’s the Lyrica) hair loss.

Yup it sucks and well my hair is bloody everywhere, every time a brush my hair I could proably make wig or two. Every time I take a bath there’s hair clogging up the drain. Sigh…

I hope this thread is helping everybody see there not alone in the side affects, and what to expect when starting or switching to a different medication.

Yes KC, there multiple sites for drug side affects, but for some odd reason I find it more comforting to hear from others who share the same affliction as me. I also figured, all our new friends/ members may benefit with a discussion here and seeing other friends/ members are going through the same thing as they are.

16

Carbatrol (Carbamazapine) - caused brain fog, sodium levels bottomed out causing a seizure. Stopped taking this one after a week.

Gabapentin - controlled the pain, but I had difficulty finding words & my fine motor coordination is just about gone. Worked well in 2011. In 2012 we had to add baclofen. Stopped working completely in September.

Baclofen - caused slight dizziness; otherwise well tolerated, but didn't work very well.

Lyrica - I've been on this med about a 1 1/2 weeks. Trying to wean off gabapentin & baclofen while ramping up the dosage. So far, initially some dizziness that goes away (mostly). Also drowsiness, trouble finding words & trouble writing. Seems to be taking the edge off the pain.

17

Weight gain with neurontin, for me



Sue Richey said:

Oh, I forgot to add WEIGHT GAIN with Lyrica.

18

Well well - my hair is falling out too but I don't know if its from low thyroid or Lyrica. Didn 't know that could be a side effect.

Kari said:

Ugh I figured another side effect from Lyrica (least in pretty sure it's the Lyrica) hair loss.

Yup it sucks and well my hair is bloody everywhere, every time a brush my hair I could proably make wig or two. Every time I take a bath there's hair clogging up the drain. Sigh.....

I hope this thread is helping everybody see there not alone in the side affects, and what to expect when starting or switching to a different medication.

Yes KC, there multiple sites for drug side affects, but for some odd reason I find it more comforting to hear from others who share the same affliction as me. I also figured, all our new friends/ members may benefit with a discussion here and seeing other friends/ members are going through the same thing as they are.
19

Hair falling out could also be from stress ?? Just from being in pain I think...then you add the anti-convulsants into the mix and well that just adds to the fun. :(

20

Hair falling out from stress?? That explains a lot!! ;(

Min said:

Hair falling out could also be from stress ?? Just from being in pain I think...then you add the anti-convulsants into the mix and well that just adds to the fun. :(