[susyyy]

Hi there.
This is my first post in here..
My name is Susan, Im 29 and am married and have a 2 year and half boy.

The thing started a year and half ago.
It started when a friend of mine convinced me to take this fat burning pill that it is supposed to make u lose weight. Im anti slimming pill so I was hesitant to take it. She was taking it, along with her husband and mother, all of the lost weight! i was like what r u feeling, shes like nothing, it will work out! so I was stupid and started the pill one day, and after a couple of days I started feeling stuff, like, insomnia, fast heartbeat, my mouth was soooooooooooo dry, and it was burning! i felt something stuck in my throat too! I was so worried I said I will stop it, but my friend told me it will go away! I continued and the symptoms got so much worse, my tongue started to crack! I felt like a dragon! that moment I sstopped it, and the next thing I heard is that the pill isnt herbal its just a copycat for Reductil, which contains the ingredient of Sibutramine.

After I stopped it, I felt miserable, I still had few symptoms, my tongue would return to its normal texture, and my mouth was still burning and its so dry! Until now, a year and half after Im still like this. Ah and also would like to add that tongue is very sensitive, it burns from toothpaste, from sweet food, spicy food. Sometimes out of nothing it bleeds the tip of my tongue from the taste buds I dont know!!

First thing I went to a gastrointestinal doctor, he had an endoscopy done, and said I had GERD, I was like WTF, since when?? anyway I was put on Pariet for 6 months but still wasnt cured. Then I went to see a Thyroid doctor, who had tests done and everything was normal. Then sent me to a ENT doctor, which said he will just put a note that I might have sjogren's syndrome I was like OMG!!!!!! Anyway, the ENT sent me to see a joint doctor, dermatologist and another gastrointestinal doctor. all ruled out sjogren's symptom.. The dermatologist and gastrointestinal said that maybe it could be something related to a cranial nerve.. the doc prescribed for me Neurontin and told me to start it with 300mg and increase it to 900mg. But the gastro doc had me on a treatment that said if it doesnt work to start Neurontin. I had my liver checked, everything! Vit B, V, Magnesium.. the gastro doc put me on Zinc during the treatment that should go for 20 days and which have passed! Ahh, seems I forgot to add that some docs thought it was a candida thrush.. did so many things like taking Diflucan and Daktarine gel on the mouth.

So a few days ago I decided to see a Neurologist, which honestly I didnt like, but he was checking me and he was like what if its candida I told him it isnt! anyway he continues with his talking and then i told him about Neurontin, then he said he doesnt think I need it that maybe it is an allergic reaction to something, what? why am I like this for more than a year then!!!

So Im taking Neurontin, and Im up yesterday to 900mg, but there is something weird going on, yesterday I lost my taste and smell sense. I have no idea whats going on? is this normal from Neurontin?? Im so so so so so MISERABLE, at work Im not ME, at home am always moody because Im not ok, Im not comfortable, Im not the old Susan, something took over me and its ruining me and ruining my life.!! Please someone guide me what should I do

[susyyy]

Just to amend something,
'I thought my tongue would return to its normal texture, but it didnt"

[norahs]

I have the same issues with Neurotin, I lost my sense of taste right away and I also have no appetite, nothing appeals to me. I can never figure out what to eat and I have never been like this. I have to take the stuff so I am putting up with the side effects. Neurotin targets nerve pain and I think there are other things you might try if this is too frustrating.

If it were me I would insist someone take a close look at those so-called "diet" pills and I wouldn't rest until they had it figured out. Good luck I know this is hard for you but just keep at them.

[susyyy]

norahs,

thanks for the reply!
How long have you been using Neurontin?? you never got back your sense of taste?? can you smell?? Im freaked out you know.
I have been today marks the 4th day on it and I dont see improvement. I have no idea what is wrong with me. I made an appt with another Neurologist but to see him i have to wait till the 18th of Sept! IMAGINE!!! oufffffff!

Anyway, I hope someone else also joins this conversation to see if I can get help from.

[neurochick]

I was on Neurontin for a few years, and then Elavil for a few more years. I feel like I've lost some of my sense of smell and taste and touch, but I wouldn't know if that's caused by medication or what exactly.

[Sheltiemom18]

Hi -

A couple of questions.

1. What tests did you have to diagnose Sjogren's?

2. Is the dryness confined only to your mouth, or do you have dry eyes and/or dry skin?

Reason I ask is because I have primary Sjogren's with the dry eyes , dry mouth - neither of them are severe - and very dry skin. The dryness is referred to as sicca syndrome because in Sjogren's the body's moisture glands can be affected to a lesser or greater degree.

Dry mouth can cause tongue problems for sure. But sometimes the dryness continues further down the digestive tract.

Sheltiemom18

[Sheltiemom18]

Forgot one of the more common dry areas:

Nasal passages.

Sheltiemom18

[norahs]

Originally Posted by susyyy

norahs,

thanks for the reply!
How long have you been using Neurontin?? you never got back your sense of taste?? can you smell?? Im freaked out you know.
I have been today marks the 4th day on it and I dont see improvement. I have no idea what is wrong with me. I made an appt with another Neurologist but to see him i have to wait till the 18th of Sept! IMAGINE!!! oufffffff!

Anyway, I hope someone else also joins this conversation to see if I can get help from.

I have been on neurotin since last November. I noticed the loss of taste immediately. I am not as aware of it anymore but that could simply be because of have gotten used to it. My doctor looked up "all" the possible side effects and that is one of the really rare ones. I decided to put up with it because it really helped with the pain.

If I were you I would call the doctor back that prescribed the medication and have him change you to something else. Everything will come with it's own side effects so you probably will have to decide what you can live with in order to relieve the pain but I would not wait until your visit with your new doctor. That is too long to be completely freaked out.

I hope you get some help soon.

[nide44]

Originally Posted by susyyy

norahs,

thanks for the reply!
How long have you been using Neurontin?? ......I have been today marks the 4th day on it and I dont see improvement........

Neurontin isn't a 'quick fix'. It has to be in the body at a specific level 24/7.
900mgday is just a starter dose to start to build it up in your system.
I woudn't think you'd feel anything significant.
Usually it can take 2-4 weeks before any difference is felt.
Considering that I was taking 4,200 mgs/day before I switched to Lyrica,
your dosage is a significantly small one.
Most don't feel any results until at least 1800-2400mgs/day and it would be advisable to also take a pain med along with the neurontin. Most of us use a 'cocktail' of two or more meds together with neurontin for best results. I take Tramadol (Ultram) 300-400mgs/day.
Neurontin has to be taken in regular, equally divided, doses- so that a level amount is continually in the bloodstream 24/7.
It really isn't designed to be taken as an 'as needed' med.
(I am not saying that is what you are doing-I am just stating its usage)

[darlindeb25]

Why do you think you "can't" have candida issues? I had never heard of candida, was researching and found it, it was the best thing I have ever done for myself. I deal with leaky gut syndrome, which candida can cause also, but mine is probably because of my years of untreated gluten intolerance. The candida diet did wonders for me, including helping me lose 95#.

I can't take meds, everything they have tried with me causes a flare with my leaky gut, so I deal the best I can without meds.

The diet stuff you were taking could of caused candida issues and once they get going, it's difficult to fix, not impossible, but difficult and time consuming. I feel much better now. By the way, apple cider vinegar with the mother is what caused me to find out about candida albicans. Research it, please.