Side Affects List

General General TN & GPN (Old Site)
21

Yes. I have noticed that happening to me before.....Stress a DEFINITE factor..I will say tho,,that since I haven't been working. My pain level has gone down and my hair isn't falling out as much.. I am not on Trileptal anymore either. So that could be helping too, as far as keeping my hair where it BeLONGS ....LOL I hope you can get some stress relief SOON!!!

When working ,,you have to constantly worry about screwing up being on heavy medications. That adds a tremendous amount of stress for me... So no work..much less stress....less pain. less meds... Better disposition.

I think I'll stick with not working, as long as I can anyway...Take care Shadow2.

22

Lamictal- fever and rash over complete body

Gabapentin- tiredness, forgetfulness and tremors, reduced energy, reduced appetite, dizziness, nausea, blurred vision, breathlessness, fogginess, vagueness, mouth ulcers

Amitripyline - tiredness, vagueness, fogginess, blurred vision, double vision, hallucinations, low blood pressure, raised heart rate, palpitations, forgetfulness, difficulty processing words and completing sentences, nausea

Phenytoin- unsteadiness, dizziness, falling to one side, palpitations, tiredness, reduced energy, tremors, nausea, reduced appetite, raised heart rate, blurred vision, breathlessness,

Pregabalin- tiredness, tremors, dizziness, steadiness, blurred vision, double vision, hallucinations, vagueness, reduced energy, reduced memory, difficult processing and completing sentences,

Tegretol- tiredness, forgetfulness, reduced memory, low blood sodium, low white blood cell count, liver and kidney damage, tremors, falling to one side

23

I,m on gabapentin and baclofen

Side effects: word retrieval, I have to stay up late to fall asleep, brain fog, swollen ankles, forgetting to eat then being so hungry that i'll eat just about anything at any time that has lead to weight gain.

24

Carbamazapine: i felt bad tempered

gabapentin: 4 days on it,i felt spaced out

cymbalta: 1 tablet. Terrible headache,and terrible stomach ache

nortriptyline: still on these,for me these have by far been the ones to help. i have very dry mouth,weight gain,but then i have fat thyroid too. I have involuntary movements which could be anywhere.

I am yet to try the oxycarbamazapine (spelling). I may ask to try amyltriptyline low dose to see if it helps with the teeth issue.........

25

Carbamazepine unable to think clearly dizzy, sleepy

Gabapentin sleep head feels floaty like I can't hold it still hand jumps at times

Lycerica I bad side affects same with baclofen shakes extremely dizzy can't talk

26

Not sure where I should post this so forgive me for just hooking on. First, all the anti-convulsants have made me feel zombie like. Like in a fog, not able to think, plus worse headaches, also time perception,.unable to find words or even think straight.

Secondly, has anyone personally had the gamma knife radiosurgery? I am confused. A friend of mine is having it done over a period of 4 days. Is this typical. I didn't want to ask her too many questions and have her think I was second guessing her doctors,. She has ATN, as do I,. I was told that there is no surgery for ATN and that I do not have any compressed nerves according to MRI with contrast. Please, if you have had this done, tell me your outcome and any side effects. Of corse, I am praying it works for her and if so, maybe I should look into it. Confused and Thanks to anyone that can give me any personal info.

27

kath, I am terrible with details (thanks, gabapentin) but very often our compressions do not show up on the MRI. If it is not

a certain slice (there go the details) it is not powerful enough to show so they very well might be there. If you watch Ken Casey's video he talks about successful MVD's with TN2 just not as high success rates as TN1. I have TN2 as well, so many of us do. Just this week I asked my dr. for nortriptyline because I read so many of us (TN2) have been helped by it.

Gamma knife is destructive. I would be scared to do that but if there were no other answers??

28

Thanks Shadow2. I am very worried for my friend who is having the Gamma knife for ATN next week. She has only had ATN for less than 2 yrs and is still able to functions way better than myself and many others here. BUT, everyone has to decide how much they can take painwise. She has read on line, but has never talked to anyone that has had one done and does not belong to any of these on line groups. I know that they have helped me out many times. Nothing like talking to the real thing. I certainly appreciate when someone takes the time to listen and it really does help.Only, if you have been there, can you understand the language of us tn'ers. Like the word "thingy" that I use many times every day.

29

I will say, I never worry about how what I am typing here because I know we all get it and know "oh, that must be her meds talking", lol. Goofing words or spelling is no big deal here.

Can you get your friend to sign up here? Or at least maybe read the threads, especially on GK and TN2? Do you have Dr.Casey's book, Striking Back that you could lend her? Maybe she can watch the video I was talking about...it is Dr. Casey at one of the TN conferences, I think. He is talking TO US! Speaking in a way we can understand. It is a long video but most of us break it up. I have seen parts of it several times and get new information every time. He helps us to understand the pain, too. It would help your friend just to understand, even if she goes ahead with the surgery.

30

Hi, Kath, I have had GKRS. ON 2-29-08. It is often used because it is less invasive and doesn't take very long to do.. The procedure itself, for me only took thirty minutes tops. But...I had to have an MRI and a CAT SCAN with the halo attached to my head so that my Doctor could pinpoint where the blood vessel was that was causing the problem. Thereby knowing where to concentrate the gamma rays. I had a couple hour wait in between the xrays and the procedure to wait for my turn in the machine. Afterwards, they just took the halo off and put bandaids on my forehead and sent me home. I assume, they told your friend four hours because from start to finish it may take that long...

I was free from the intense burning pain for three years. I still had the dull aching pain tho and my tongue became numb on the right side because of the surgery. However, my returning pain is not as bad as it was prior to the procedure.

31

Topomax: bottomed out at 200 mg. felt like my insides were being torn apart by a washing machine. Literally felt like I was going to fly out of my skin. The drug did remove all issues with my gums and freed up my jaw so we went to 150 and hopefully as I recover more from my MVD these issues will resolve on their own. Oxcarbazepine : sodium levels plummeted, ended up in the ER.