Update on my TN fun

1

Well, after a solid month of a bad episode with TN, I finally made it into my Doctors office. I told him the ‘Depakote’ was no longer working as it had been. Using what I learned here about ‘Neurontin’, I told him I’d really like to try it out.


I'm now a couple weeks into weening off the 'Depakote' and now taking 'Neurontin' three times a day. Next week I'll be taking two twice daily and be off the 'Depakote' all together. Thank Goodness!

The pain is still there. Still hurts to talk and eat, but my trigger(s) have calmed down, and the nerve itself is MUCH more calm.

That said, I'm also taking pain killers, which I HOPE to be off of soon. I don't really like being on them, but at least at some points I can enjoy the floaty feeling. lol....

If there is anyone out there that has a doctor that pushes 'Depakote', let me tell you a couple things I've learned about it.

Weight gain due to the drug making you CRAVE carbs like nothing else. Also, I retained water like a camel. My feet blew up, as did my legs. So much so that I could grip my leg for a few moments and my hand imprint would stay on my leg. It was a creepy thing to show people, but very uncomfortable. I felt like I was carrying 30 pounds of H20 on me, which may be true.

'Depakote' turned off my libido. It wasn't right away, but a few months into taking it, I had no desire to even THINK about sex. For some, this might not be a problem, but to someone wanting to start a family, it brought on nothing but depression.

It also made me tired all the time. I'd wake up feeling pretty good, but about an hour after taking it, I'd be hungry and tired. I'd HAVE to take a nap every day for at least 2 hours just to make it to bed time.

Along with the carb cravings, 'Depakote' just made me feel hungry all the time. I craved sodium as well.

I'm now in the process of slowly taking off the extra weight that I gained. I am hoping the 'Neurontin' doesn't effect me the same way; though the side effects are similar. (fingers crossed)

Perhaps someone out there currently taking 'Neurontin' can tell me how you're affected.

I fear that my TN is getting worse. Hopefully I can get a noose on it and strangle it with 'Neurontin' otherwise I will try something new.

I feel for all of you out there. From the people that have small fits of discomfort to the people that can't even get out of bed due to the pain. I hope you all find relief; including myself! :)
2

Hi Jon,
Gosh if your idea of fun is TN, then I don’t want to live your life. I hope the neurontin works for you. What strength are you taking? I take 3600 mg of neurontin along with trileptal and tylenol 3. Most of the time my pain is controlled but I do have breakthrough pain every day. I know my pain is much more controlled than a lot of you. I’ve put on some weight recently along with additional memory and confusion issues. I’m not sure which drug to blame. I have been taking neurontin for about 3 years. The other two I’ve been taking for almost 2 years. I hope your pain isn’t getting worse. Have you had a MRI and have you considered any treatments? I really suggest everyone have a MRI just in case there is a compression although compressions are found quite often in surgery and the MRI was negative. I hope your TN isn’t getting worse.
Liz

3

Hehe, well it’s not FUN but I do have to keep a good attitude. It could always be worse.

So far, the Neurontin is working! I’m now taking 1200mg daily. We’ll see if it works. I suppose that’s what my doctor started me off with. Hopefully the lower dose works.

I haven’t had an MRI, but may end up getting one done. …but as you stated, many times they show nothing. This is a hard ‘disease’ to fight, for sure.

I too hope my TN isn’t getting worse. I really don’t want surgery, but if it comes down to it, I shall do just that.

I hope YOUR pain goes away! I know it’s a lot to ask, but I can dream, right? :slight_smile:

Good luck and thanks for the reply.

Jon

Liz K. said:

Hi Jon,
Gosh if your idea of fun is TN, then I don’t want to live your life. I hope the neurontin works for you. What strength are you taking? I take 3600 mg of neurontin along with trileptal and tylenol 3. Most of the time my pain is controlled but I do have breakthrough pain every day. I know my pain is much more controlled than a lot of you. I’ve put on some weight recently along with additional memory and confusion issues. I’m not sure which drug to blame. I have been taking neurontin for about 3 years. The other two I’ve been taking for almost 2 years. I hope your pain isn’t getting worse. Have you had a MRI and have you considered any treatments? I really suggest everyone have a MRI just in case there is a compression although compressions are found quite often in surgery and the MRI was negative. I hope your TN isn’t getting worse.

Liz

4

Hi Jon,
Glad you are doing better. And maybe one day it won’t be a dream. It will be reality for all of us. Get an MRI. I would not hesitate to do that. If it is negative, then you can continue meds and maybe you will never get worse. But if you do have a compression, then you can take care of it. I truly believe that a compression can cause irreparable damage to the nerve. But I’m not a doctor. You and your surgeon can discuss that.
Liz

Jon Moore said:

Hehe, well it’s not FUN but I do have to keep a good attitude. It could always be worse.


So far, the Neurontin is working! I’m now taking 1200mg daily. We’ll see if it works. I suppose that’s what my doctor started me off with. Hopefully the lower dose works.



I haven’t had an MRI, but may end up getting one done. …but as you stated, many times they show nothing. This is a hard ‘disease’ to fight, for sure.



I too hope my TN isn’t getting worse. I really don’t want surgery, but if it comes down to it, I shall do just that.



I hope YOUR pain goes away! I know it’s a lot to ask, but I can dream, right? :slight_smile:



Good luck and thanks for the reply.



Jon



Liz K. said:
Hi Jon,
Gosh if your idea of fun is TN, then I don’t want to live your life. I hope the neurontin works for you. What strength are you taking? I take 3600 mg of neurontin along with trileptal and tylenol 3. Most of the time my pain is controlled but I do have breakthrough pain every day. I know my pain is much more controlled than a lot of you. I’ve put on some weight recently along with additional memory and confusion issues. I’m not sure which drug to blame. I have been taking neurontin for about 3 years. The other two I’ve been taking for almost 2 years. I hope your pain isn’t getting worse. Have you had a MRI and have you considered any treatments? I really suggest everyone have a MRI just in case there is a compression although compressions are found quite often in surgery and the MRI was negative. I hope your TN isn’t getting worse.
Liz

5

Well, happy to say (crossing fingers) that last night, most the pain died. It just died. I was shocked. So shocked in fact that I couldn’t sleep…but in a good way. I watched Futurama and The Simpsons while I worked on my car. hehe. It just felt so amazing to be able to talk to my wife without having to stop… or take a drink without a shot of pain… I felt like I should seize the moment and enjoy the night. So, that’s exactly what I did.

So often, I’d have a good night of zero pain and wake the next day with the pain returning. But, so far so good. Like Elvis, the pain has left the building.

As far as an MRI, you’re probably right. I do believe I tracked the pain to it’s source. Which is in the very back of my neck. I was in a roll over car accident when I was 15. I took the worst of it when the roof crumpled and hit me square in the back of the head. My chin hit my chest hard enough to leave a good sized bruise and I was pinned upside down.

The ER x-rayed and checked my neck for a good long time. I hated being there… I do believe they thought I was drinking and got into a wreck. So they treated me terrible. Anyway, when the doctor came in, he said there were some ‘abnormalities’ in the back of my neck…

Then, fast forward to about 6 months ago. I popped my neck whilst stretching… at the same time my neck popped, a lightning like shot of pain ran thru my neck, jaw… all the way to my chin on the right side. It was like ‘POW’. So… I should probably have them check that area again. It’s quite possible the problem lies there.

One day at a time though.

I hope with all my heart though that everyone here gets RELIEF! May whichever God’s you believe in shine upon you! :slight_smile:

Liz K. said:

Hi Jon,
Glad you are doing better. And maybe one day it won’t be a dream. It will be reality for all of us. Get an MRI. I would not hesitate to do that. If it is negative, then you can continue meds and maybe you will never get worse. But if you do have a compression, then you can take care of it. I truly believe that a compression can cause irreparable damage to the nerve. But I’m not a doctor. You and your surgeon can discuss that.

Liz


6

Thanks for updating! And i really hope that your Dr. is able to work with you. I just started depakote about a month ago…I was VERY hesitant to go on it because of the weight issue. I also heard hair loss? How much depakote were you taking? I am on a low dose of 750 mg. a day.
Best wishes!

7

I really didn’t like the Depakote, BUT for over a year, it gave me relief. I didn’t mind the weight gain at first, but after gaining a lot of weight, about a 1/4 in water retention, I started not liking it. hehe.

It took some time, but it did stop working for me.

I was on 2000mg per day. The dosage is measured by body weight, so you must be much lighter than I. :slight_smile:

Never did have any issue with hair loss, so hopefully you won’t either. In fact, when I first got on Depakote, I had very long hair and didn’t notice any extra hair in the shower drain… :slight_smile: You may even get lucky enough to not gain weight.

One thing I will say - learning from my mistakes… if/when you do get carb cravings, which I always got after taking my pills, try a baked potato, or some brown rice, or even a glass of milk with wheat toast. Anything that will fill your tummy but without filling it with a lot of carbs.

You’ll have to fight the carb urges. It’ll make you feel like you haven’t eaten for two days. It’s terrible.

Good luck! If you have any questions, feel free to ask… nothing is sacred when it comes to TN relief.

Jon

Ally Castellano said:

Thanks for updating! And i really hope that your Dr. is able to work with you. I just started depakote about a month ago…I was VERY hesitant to go on it because of the weight issue. I also heard hair loss? How much depakote were you taking? I am on a low dose of 750 mg. a day.
Best wishes!

8

I’ve never been to Dr Depakote…I do like the ‘TN FUN’ approach!

Since there are no rules and the penalties seem endless; at least you show good sportsmanship!!! bob

9

“TN Fun” would be well understood here in the UK where we have a very ironic sense of humour. I’m glad that things are a bit better for you now Jon but having your neck checked sounds a good idea.

Bob Snodgrass said:

I’ve never been to Dr Depakote…I do like the ‘TN FUN’ approach!

Since there are no rules and the penalties seem endless; at least you show good sportsmanship!!! bob

10

Jon,

Thanks for your advice/info. I slowly feel like I am retaining water more, but who knows. I do not want to be on it for a long time…waiting for the script from my Dr to get the blood levels checked to see where I should go. The depakote makes reading things difficult at times. People make fun of how wide eyed I get just to read something. What are you taking currently?

Jon Moore said:

I really didn’t like the Depakote, BUT for over a year, it gave me relief. I didn’t mind the weight gain at first, but after gaining a lot of weight, about a 1/4 in water retention, I started not liking it. hehe.


It took some time, but it did stop working for me.



I was on 2000mg per day. The dosage is measured by body weight, so you must be much lighter than I. :slight_smile:



Never did have any issue with hair loss, so hopefully you won’t either. In fact, when I first got on Depakote, I had very long hair and didn’t notice any extra hair in the shower drain… :slight_smile: You may even get lucky enough to not gain weight.



One thing I will say - learning from my mistakes… if/when you do get carb cravings, which I always got after taking my pills, try a baked potato, or some brown rice, or even a glass of milk with wheat toast. Anything that will fill your tummy but without filling it with a lot of carbs.



You’ll have to fight the carb urges. It’ll make you feel like you haven’t eaten for two days. It’s terrible.



Good luck! If you have any questions, feel free to ask… nothing is sacred when it comes to TN relief.



Jon



Ally Castellano said:
Thanks for updating! And i really hope that your Dr. is able to work with you. I just started depakote about a month ago…I was VERY hesitant to go on it because of the weight issue. I also heard hair loss? How much depakote were you taking? I am on a low dose of 750 mg. a day.
Best wishes!

11

I tried making rules, like; “No Pain on days that end in ‘Y’” but, the TN monster won’t listen.

I just try to keep a smile on my face, even if I can only raise the left side of my mouth. :confused:

Bob Snodgrass said:

I’ve never been to Dr Depakote…I do like the ‘TN FUN’ approach!


Since there are no rules and the penalties seem endless; at least you show good sportsmanship!!! bob

12

Funny you should say that, Pat. I’m a secret Brit. Even down to the TV shows I watch. I just can’t stand US TV after watching BBC, Channel 4 and so on. Thanks for 'Top Gear" and “Big Brother” “Doc Martin” among others… :slight_smile: Oh, lest not we forget “Monty Python”…

I plan on coming to the UK one day to trace my roots. I have family there somewhere. I even heard a rumor that my family owns a small chunk of London.

I tried to drive there once, but got stuck in the sand on the east coast of the US. I think if I pick up the pace, I can skip across the Atlantic. :slight_smile:

Thanks for the kind words.
Jon

Pat Gascoigne said:

“TN Fun” would be well understood here in the UK where we have a very ironic sense of humour. I’m glad that things are a bit better for you now Jon but having your neck checked sounds a good idea.
Bob Snodgrass said:
I’ve never been to Dr Depakote…I do like the ‘TN FUN’ approach!

Since there are no rules and the penalties seem endless; at least you show good sportsmanship!!! bob

13

I didn’t retain water right away, but it slowly made my feet and legs swell to the point that it felt like I had Olympic Athlete legs. I could push my fingers into my legs and create a dent that lasted 30 seconds or so. Terrible. Since I got off the stuff, (Depakote free now for 5 days), the swelling has gone down.

The blood levels will be mostly to check how much Depakote is flowing thru your blood, and check for any liver issues. You probably already know this.

One thing I forgot to tell you; Depakote made my eyes ‘freak out’ to use a medical term… lol. They would bounce left to right when I tried to focus on something close. It didn’t happen right away, but after about 4 months on it, it was tough to ignore. Since I’ve been off it, I haven’t noticed it. Welcome change, for sure.

I’m currently on ‘neurontin’ - or rather, it’s generic version ‘Gabapentin’, 600mg twice daily. I like it MUCH better. You might want to ask your doctor about it. So far, it’s keep ‘MOST’ of the pain away and I don’t feel as ‘plump’. I’ve only been on it a few weeks now, but it’s slowly working.

I know switching meds is tough, especially when you’re just starting another. …but you may talk to your doc and tell him/her that you really don’t like the side-effects of Depakote.

Of course, take anything I say with a grain of salt. I was happy to hear my doctor say “Oh yes, Neurontin is a good one…” when I handed him my piece of paper begging him for help… (I couldn’t talk at all).

Which reminds me, that may be helpful for you. Write down every side effect you feel, and of course your feelings on the drug. It was helpful for me and my doctor, as I often forget to tell my doc things when I’m in there.

I hope you’re getting relief and not suffering.
Jon

Ally Castellano said:

Jon,


Thanks for your advice/info. I slowly feel like I am retaining water more, but who knows. I do not want to be on it for a long time…waiting for the script from my Dr to get the blood levels checked to see where I should go. The depakote makes reading things difficult at times. People make fun of how wide eyed I get just to read something. What are you taking currently?



Jon Moore said:
I really didn’t like the Depakote, BUT for over a year, it gave me relief. I didn’t mind the weight gain at first, but after gaining a lot of weight, about a 1/4 in water retention, I started not liking it. hehe.

It took some time, but it did stop working for me.



I was on 2000mg per day. The dosage is measured by body weight, so you must be much lighter than I. :slight_smile:



Never did have any issue with hair loss, so hopefully you won’t either. In fact, when I first got on Depakote, I had very long hair and didn’t notice any extra hair in the shower drain… :slight_smile: You may even get lucky enough to not gain weight.



One thing I will say - learning from my mistakes… if/when you do get carb cravings, which I always got after taking my pills, try a baked potato, or some brown rice, or even a glass of milk with wheat toast. Anything that will fill your tummy but without filling it with a lot of carbs.



You’ll have to fight the carb urges. It’ll make you feel like you haven’t eaten for two days. It’s terrible.



Good luck! If you have any questions, feel free to ask… nothing is sacred when it comes to TN relief.



Jon



Ally Castellano said:
Thanks for updating! And i really hope that your Dr. is able to work with you. I just started depakote about a month ago…I was VERY hesitant to go on it because of the weight issue. I also heard hair loss? How much depakote were you taking? I am on a low dose of 750 mg. a day.
Best wishes!

14

Thanks for the reply, James. I hope the Neurontin helps for awhile… so far, it’s doing it’s job (as I swallow my dose for the evening)…

So far, the side-effects are minimal, but I’m on a low dosage at the moment. We’ll see how everything is down the road. One day at a time, right? :slight_smile:

I’ll have to do a little research on the other meds you mentioned. Never a bad idea to have a handful of knowledge for the doctor to chew on.

I’ve certainly noticed that I’ll make a plate at dinner with the same amount of food I used to dish up when I was on Depakote, only to find I can’t finish it. It’s a welcome feeling to actually feel FULL!

Thanks again. :slight_smile:
Jon

James Curley said:

Hello Jon,
I have had atypical TN for 20 yrs and have been on most of the anti-convulsants out there. I can definitely realate to your reaction to depakote. I hated that med although it did provide ssome relief. i also was hungry all of the time and ate morre than usual when I did eat. I gained at least 30lbs while on it while experincing many otehr neg. sid effects. It wasn’t until after I was off of it that my doctor told me (and this was my gp, not my neuro) that the average person gains 30lbs while on depakote. No-one had told me that before I started taking it! I also was switched to neurontin and was taking heavy doses of it along with cymbalta. I was taking heavy doses (2700mg/day). I started to lose the weight I had gained and slowly lost the 30lbs, so have hope! Neurontin also has neg. side effects. For me the primary one was extreme drowsiness(which I also experienced with neurontin) and also dizzziness/light-headedness. Simply put: I just didn’t feel right in the head! Finally it just lost its effectiveness after about 2 and 1/2 yrs.

I am now taking lamictal which is by far the best anti-convulsant that I have been on in terms of pain relief and fewest side effects. Compared to the others it’s like not having any other side effects at all. I do take 300 or 600mg of neurontin aday along with 1mg of clonazepam. I am in the process of upping my lamictal to 200mg/day and hope that I can get off both the neurontin and the clonazepam. We all react differently to different meds but for me lamictal has been a Godsend. I will be updating my profile as I proceed with my med adjustments. I hope that you continue to improve.

James

15

So far neurontin is doing it’s job. I still have some pain in my tongue. Sure makes talking fun! hehe. I’m have an appointment next week for a check up. My doctor may up my dose of the neurontin, I’m guessing. I’m only on 600mg twice daily, which from what I’ve been reading is a rather small dose.

Anyway, I AM able to sleep - which is fantastic. In fact, the first night I felt relief I chose NOT to sleep because I was so happy. I worked on my car, played on the computer, danced around the house… it was fabulous. :slight_smile:

I haven’t felt drowsy from the neurontin, but the Oxycodone I’m taking does make me feel a little tired and woozy of course. I rather enjoy the euphoria, but would much rather feel sober and pain free. Luckily, I’ve been able to limit the amount of Oxy I’m taking. I was taking it every 5 hours or so when I was starting neurontin and weening off Depakote, but now I’m down to about 2 per day. One in the morning and one about an hour before dinner.

I’ll ask my doctor about Lamictal and see what he says. At this time though, the Neurontin is working!! So thankful.

I’m also losing the weight, slow but sure. The water I retained in my legs and feet is gone. My shoes fit again!! hehe.

Thanks for the reply. I’m not alone!! :slight_smile:

James Curley said:

Hey Jon- neurontin worked for me for about two and a half yrs. I did experince bad drowsiness but at the time it was the best med I had been on. Lamictal is the answer for me but may not be the answer for you. Who knows, right? I am just very glad to be able to say that I can sleep and not wake up with the hangover effect of other meds. No dizziness, no zombie-like feeling. I feel human again. Isn’t that nice? Hard to believe. I just hope it continues but I really believe that as I increase my dosage of lamictal that I will finally be able to be myself.
James

16

Hi Jon,
Glad you are doing better. Both my old neuros thought that the pain should be totally controlled because the pain may become out of control. I go to a new one on Wed. I don’t know how he will choose to treat me.
Liz

Jon Moore said:

So far neurontin is doing it’s job. I still have some pain in my tongue. Sure makes talking fun! hehe. I’m have an appointment next week for a check up. My doctor may up my dose of the neurontin, I’m guessing. I’m only on 600mg twice daily, which from what I’ve been reading is a rather small dose.


Anyway, I AM able to sleep - which is fantastic. In fact, the first night I felt relief I chose NOT to sleep because I was so happy. I worked on my car, played on the computer, danced around the house… it was fabulous. :slight_smile:



I haven’t felt drowsy from the neurontin, but the Oxycodone I’m taking does make me feel a little tired and woozy of course. I rather enjoy the euphoria, but would much rather feel sober and pain free. Luckily, I’ve been able to limit the amount of Oxy I’m taking. I was taking it every 5 hours or so when I was starting neurontin and weening off Depakote, but now I’m down to about 2 per day. One in the morning and one about an hour before dinner.



I’ll ask my doctor about Lamictal and see what he says. At this time though, the Neurontin is working!! So thankful.



I’m also losing the weight, slow but sure. The water I retained in my legs and feet is gone. My shoes fit again!! hehe.



Thanks for the reply. I’m not alone!! :slight_smile:





James Curley said:
Hey Jon- neurontin worked for me for about two and a half yrs. I did experince bad drowsiness but at the time it was the best med I had been on. Lamictal is the answer for me but may not be the answer for you. Who knows, right? I am just very glad to be able to say that I can sleep and not wake up with the hangover effect of other meds. No dizziness, no zombie-like feeling. I feel human again. Isn’t that nice? Hard to believe. I just hope it continues but I really believe that as I increase my dosage of lamictal that I will finally be able to be myself.
James

17

Neurontin caused my blood-sugar levels to go crazy. I am now pre-diabetic or hypoglycemic because of taking it at 3,600mg/day for 2 years, total!