Thanks for replying Heidi.


I know many people have had strange side effects with Neurontin... I'm on 1800 mg right now, and I am working on increasing it. But, when I increased it suddenly a few weeks back I started having chest pain, and was dizzy. Whenever it is increased it makes me dizzy, and then the dizziness wears off. However, the chest pain made me a little leary... I know that's a rare side effect of the Neurontin.

Wow. You started at a HIGH dose, huh?! When I was first diagnosed I was started at 300 mg, but we started increasing it fairly quickly.

I know that if you are seeing benefits w/ it, that Drs. like to have you work up to the highest dose, which is 3200 mg.

I'm glad you are doing well with it.

IHH,
I've been on Neurontin for 3 years now, and I've definitely had a lot of side effects - metabolic changes, weight gain (not serious, but then again, who likes weight gain? ), dizziness, and sleep changes.

I've found that while my circulatory problems are constant, my pain isn't. In order to deal with that, I've been on as much as 3200 mg of Neurontin. Being young (like you, I'm only 21), I'm leary of becoming too used to my medicines. So, with my doctor's consent, I now modulate my doses for my pain. If I'm having a good week, I lessen my dose to as little as 300 mg per day (I don't usually get that low, but it happened, especially a few years ago). The trick is to only go up and down slowly - you can't go from 3200 one day to 300 the next.

hey

when I first got RSD I was started on 3200 whilst in hospital by my consultat. It made me feel awful and wasn't much use with the pain.... I also gained about 3 stone in 3 months (going from hockey player/ netball team/ muscisian to being stuck in bed/ using a frame)...

... the dr's took me off it and I went onto topomax which was ok - not amazingly useful though. Made me feel abit ming. had to come off it for some reason or other?

finally went on to Lyrica which made my muscle spasms much much worse...

came off it and have given up on anti epileptics - they just aren't overly effective for me (side effects aren't worth it generally).

Rxxxxxxxxxxxxxxxxx

Hey, Rosie... just wondering what instruments you played? I played piano and cello. And a tenor recorder... now I haven't played in months, but I aim to try. I played a teeny bit on piano about a month ago, though... and boy, that was so hard. My fingers didn't want to move, and my piece sounded horrid, but hey- it was more than I had done in 3 months, and so I was proud. (when I told my physical therapist, he said to not fuss because it sounded blah, just remember that I wouldn't have done that a month before. So, that's what I have to try and do, just remember where I came from with the RSD, not what I could have done a year before, without RSD). It is hard, because I could play fairly well, and I played piano for 5 1/2 years. I had only played cello 8 months.


Anywho... are Topomax and Lyrica both anti-epileptics?

I think I'm seeing some benefit from Neurontin, so for the time being I'm staying on it.

Thanks.


How are you doing today, Rosie?

IHH,
I can't answer for Rosie, but I'll add my few "notes": I'm a flutist (flautist, if you want to be snooty), a pianist, play all of the recorders, and sing as a mezzo-soprano.

I've been really lucky - my RSD is in my leg, so I still get to play, although my musical theater career has gone out the window.

Seriously, though - I have at the least had the same sort of problem with walking. After 8 years of RSD, I can't tell you anything that will make you jump for joy, but I have learned that the absolute most important part of your treatment is keeping a positive attitude. Really - it's so important to focus on the things you are still able to do, and on each new stride you make. That sounds like a bunch of platitudes, I know. I'm sorry. Have you thought about trying to redirect your musical energies? Do you sing, for example? Have you thought about trying your hand at composition? Composition is great because it's a wonderful source of expression - I love it.

Nice to meet other musicians! And you are, even if you're not playing at the moment.

Hey! SO NICE to meet you and hear you're a musician...

Oh, neato! The recorders. Seems like no one plays them these days besides the 8 year olds learning them as a first instrument.

Well, I enjoyed music, but not as much as some people. I am very dissapointed I have lost my ability to play at this time, but I am more dissapointed that I am not able to write/ draw like I could before.

I stink at composing. My sister on the other hand... My sister is a big musician. She plays violin, piano, two of the recorders, organ, saxophone, flute... She LOVES it.

I do love to sing! I don't have an awful voice, but it is not the greatest. I still sing. That is something I can do without my RSD arms and legs. LOL.

Thanks for the ideas. I know, I have to think of more positive things, and what I have accomplished and improved in. Exactly! That is what my great physical therapist always says. I know that I must be a hard one to work with when I am not improving much, or rapidly like his other patients. But I am an RSD patient, not a surgery or sport's injury patient. He knows that and he stays positive, which helps me a LOT. A little goes a long way. He always says when I say "I can't"- "Yes, you can. You've got this. You're gonna beat this". I wish I stayed so positive, but then again, I am the one in pain, not him. It's harder for me! Yup, very important to stay positive. You have helped me, because I am not feeling all that positive.

Thanks again, you are a sweetie!

My RSD is in both feet/legs and both hands/arms/shoulders.

Pain-free hugs to you. Thank you for cheering me up.

This might sound stupid, but....have you thought of switching mediums?
I mean, I don't know much about your case, but if holding a pencil becomes too painful.....what about finger painting?
I know that, for me, it's not always about doing something perfect. It's about doing SOMETHING, something that proves I'm still me - I'm myself, and I'm not defined by my RSD.

Hugs for you, too - your PT sounds like a wonderful source of encouragement. I'm glad you have someone like that in your corner.

Hey IHH and BB

Wow - great to meet more musical people!

I was grade 8 piano, grade 8 accordion, played the organ, the double bass (usually jazz or in jazz bands!), sang, sang with the girls choir, also learnt the euphonium, However, I also learnt recorders (all types... but with special emphasis on either tenor or bass - though it was never my fave and I was never that good at it).

I miss music alot.... especially the double bass - that was so soothing and it just fits with your mood, you get the most amazing jazz out of it, and then you can play something slow and sonorous and then switch to something high paced............... I just love the deep sound just welling up from inside the bass (mine was called Boris!) and you can sort of feel the music in your bones...

Unfortunatly because I'm in a wheelchair and other stuff I can't sing well anymore because I can't get into a good position for the breathing, etc... I now sound like a strangled cat if I sing.

Where you two sporty? Finger painting sounds great! one of my mates have very severe RSD and has started painting with her mouth, she holds the paintbrush between her lips and draws and paints etc...

Wow BB - a stage musical career would be soo awesome!! so sad you can't do it do you know what you'll do instead?...

I'm rubbish at composing - I can transpose but composing is abit beyond me!

You do have to stay positive with this and think how much you can achieve -it's great even playing a tiny bit... and things will improve.

Did you guys enjoy sports or handicrafts? I loved knitting and crotcheting and tried tapestry (but hated it!).... (are you getting the point that I'm not very good at sitting still yet?).

IHH - things are very horrible and hard atm - but I can't write about it yet... how are you my dear?

Take Care

Love

Rxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Wow, frogga, you sound both talented and versatile! I'm sorry that you have so much trouble with music these days. I agree with you about the bass - it's never been my favorite, but I learned the basics in high school. One of my jobs in high school was teaching beginning music lessons, so I learned the basics of every instrument in the band and in the orchestra.

I was sporty - in addition to my onstage antics, I played softball and ran on the track and field team. For the first couple of years, I managed to at least continue with theater, but soon, all of it had to go. Nowadays, I'm a professional-level audience member!

I've discovered a love of academia that has begun to compensate for my loss of theater. I'm pursuing a degree in religion with an emphasis on religious conflict and peacemaking.

I'm planning to spend next year in Belfast before moving to New York City to finish my PhD (and go to the theater - a lot. )

So what about you? Future plans? Ideas?

I can't even maintain a tempo with my windshield wipers.

Is tempo the right word? You know, when you tap the steering wheel in time with them. Can't do it.

Tapping the table in time with the base drum? Not gonna happen.

I'm pretty good with air guitar as long as no one looks at my left hand to see how I'm doing with the chords.

Owell, 64 is probably too old to think about changing careers again, anyway...Vic