A new leg to my journey

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Cheryl65
Posts: 2
Joined: Tue Mar 15, 2011 12:37 am

A new leg to my journey

Post by Cheryl65 »

I've followed this forum for many years now but have rarely contributed. I was searching for new information, new remedies to try, and anything that could help so I wouldn't need to be medicated. I was diagnosed about 12 years ago with OT. I was 34 at the time and had 3 small children. I tried Neurontin for about 6 weeks but was very nervous about missing a dose and having a seizure (which is what my neurologist told me). I decided I would rather be unable to stand then to put my kids at risk if a seizure were to occur while I was driving or cooking (or whatever). This sparked a 12-year quest for a natural remedy. Many things helped quite a bit, other things did not. But nothing completely restored my tremor-free legs for any length of time.

Now I am at a point where I need my legs back so I decided to see a neurologist (and get medicated again). I searched through all your posts and read up on Lyrica and Neurontin. After seeing a new neurologist, I asked to be put on Lyrica. I want to describe this new leg of the journey as it is happening so that others can make informed decisions as well.

Day 1 to Day 3 --I took 50 mg. of Lyrica in the morning and had no side effects. Also on day 3, I bought a coffee after standing in line for a few minutes. It was the first time in many years my legs did not feel heavy/shaky and I didn't curl my toes. I actually felt light on my feet. Weird!!! I found myself smiling as I decided to wait by the counter - standing - with no support. I hadn't felt this good in 12 years! Slept like a baby.
Day 4 - I woke up dizzy and nauseated. I felt drunk and fuzzy headed as well. I vomited after I moved from one location to another. By mid afternoon the fogginess cleared a bit but I stayed dizzy all day. Very shaky. (Was it the coffee the day before? or just normal side effects?) I took the Lyrica at night instead of in the morning.
Day 5 - Still dizzy, no nausea. Head cleared by about noon. Still very shaky. Still sleeping very well.
Day 6 - Slight dizziness upon waking but it cleared within an hour. Not as shaky.
Day 7 (today) - No side effects but the miracle I felt on day 3 is not present. Tomorrow I begin 50 mg. twice a day.

My prediction is that with each increased dosage, I will have to adjust to the side effects. Hopefully I will see some improvement with my legs very soon.

For those of you who are interested in the things that helped over the past 12 years, here is my list: blue-green algae tablets, B vitamins, sublingual B-12, walking 30 min. a day, manganese enzyme, chiropractic adjustment with kinesiology (on over-firing quads), physical therapy - hamstring curls, getting plenty of sleep, and avoiding caffeine. Things that did NOT help: homeopathic treatment, wine, organic foods, avoiding sugar, swimming (chlorine bothered me), and chemical free environment.
kate
Posts: 23
Joined: Sat Apr 17, 2010 10:10 pm
Location: Kansas, USA

Re: A new leg to my journey

Post by kate »

Hi Cheryl,

Thank you so much for sharing your experiences. It really helps me to know what others have tried, the successful and not so successful. I hope the Lyrica works for you. I bet that day you stood in line for a coffee was not a day you will soon forget. That must have been an amazing feeling. Please keep us up to date on how you are doing.

Kate
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: A new leg to my journey

Post by gloria »

Cheryl:
It was so good to hear from you again. Your reporting of your on going trials of dealing with our OT shows a very realistic approach . We have no medical guidance to follow so exploring avenues that you feel might help based on your needs is the way we must follow. Your posting was a great report and catch up with how you are doing was good of you to share. Thanks very much, Gloria
CherylM
Posts: 6
Joined: Wed May 27, 2009 3:43 pm

Re: A new leg to my journey

Post by CherylM »

I'm now 5 weeks into my Lyrica journey. AMAZING results! For the past 5 days I have experienced new legs. I can stand and not feel immediate heaviness and shaking. The feeling is similar to having weightless legs - it's almost like they are not there. What has completely taken me be surprise is the amount of energy and motivation I now have. My legs don't get fatigued so I feel more like moving around and (believe it or not) I'm sick of sitting! I can't wait to get up, stand, and try out my new legs. I've found that I've developed a bad habit of leaning on things, so I'll need to work to correct this.

The Lyrica made me so sick to start with. I was dizzy, foggy-headed, nauseated and fatigued. But this subsided after a couple of weeks. Then I started to increase my dosage by 25 mg at a time. With each increase, I felt the dizziness and foggy-headed feeling again but felt better after 2 days. I'm now up to 125 mg - morning and night. I think I want to go to 150 mg twice a day just to increase the stamina. I can stand for about 20-30 minutes but then I start to feel the heaviness (slightly). Also, my lower back seems to be strained by standing this long. It may have to do with my posture and strength since one of my learned coping mechanisms is to jut my stomach forward to support myself at the kitchen counter.

The Lyrica does make me extremely tired in the morning upon waking - but a cup of coffee fixes this right up. I never thought I'd be able to drink coffee without getting increased tremors - but now I need it and it only has a positive effect. I am SO happy I tried the Lyrica, it has seriously changed my life. Next week I give 3 presentations - I will let you know how the new legs hold up with the added challenge of nervousness and adrenaline!
kate
Posts: 23
Joined: Sat Apr 17, 2010 10:10 pm
Location: Kansas, USA

Re: A new leg to my journey

Post by kate »

Hi Cheryl,

I am SO happy for you. This is great news. I can't tell you how much I appreciate you sharing your journey. Even if the Lyrica does not help some at least it provides hope that there something out there that may help. I am seeing my doctor in a couple of weeks and plan to ask him about this. Are you taking anything in conjunction with the Lyrica? Good luck on your presentations and please keep us up to date.

Kate
aussiepommy
Posts: 27
Joined: Tue Oct 14, 2008 11:15 pm
Location: Adelaide Australia

Re: A new leg to my journey

Post by aussiepommy »

Hi all,

I was going to put up a post once i had got to my full dose of Lyrica but after reading your posts Cheryl i had to post and say how similar my experience is to yours.
I have been instructed to take a 75mg tablet once everyday for a week,x2 75mg on the second week for two weeks and then x3 75mg after two weeks and if I haven't got to a point where i am standing without the tremor i can take one more 75mg after another two weeks. This is the full dosage that can be taken. However i can stay on a lower dosage if i get the desired effect sooner. Hope that makes sense.

So far i have experienced the hangover feeling, such as a head ache (heavy head) and nausea. I haven't felt dizzy though.
I am extremely sleepy but i find that coffee helps also. I have put on weight despite moving more than i have in so long but i am concious of the fact that i have been hungry and eating more. This may be a side effect but my choice of food could be better and i can cut out the extras in my daily food intake such as a few chips and a bite of chocolate here and there. My hair is also falling out but this has happened with nearly all the meds i have tried so this may not happen for others.

To be honest the benifits far out way the side effects.

I have had the opportunity to go for walks. Get up on my feet around the house, normally all i sit all day with the accasional getting up to help my two year old or tend to my personal needs if you know what i mean. I have been walking lots and it has been great for my children, i can't tell you how it has helped them, they could finally go on a few walks in the forest which has been amazing for us all. Miracle almost!

I am yet to be able to stand still it has only helped me walk so far as my legs were extremely bad. The wheelchair was starting to be in use around the home too so you can imagine the relief to walk freely around my home. I am on 75mg twice a day at the moment soon to increase to my next level. Kate knows i am eager to get to the level that can enable me to stand still. CAN"T WAIT.

I must say that i have had back pain, i thought it was from my bed (need a new mattress) but of course you hit the nail on the head. It is from using my back muscles to hold me up right again. So glad to be feeling it then.
Thanks for sharing Cheryl and Kate i think we might be on to something with Lyrica???
aussiepommy
Posts: 27
Joined: Tue Oct 14, 2008 11:15 pm
Location: Adelaide Australia

Re: A new leg to my journey

Post by aussiepommy »

Hi All,
Just as an update, I have put on so much weight on Lyrica and i have no option to stay on it since it allows me to move around. My hair is also constantly falling out still. It is a case of Freedom V weightgain/hairloss.
What would you do??
aussiepommy
Posts: 27
Joined: Tue Oct 14, 2008 11:15 pm
Location: Adelaide Australia

Re: A new leg to my journey

Post by aussiepommy »

Another update:
I have found the symptoms are still present but i have decided that being mobile is what i choose even if it means i lose my hair and put on weight. I have had to increase to the maximum now which is 4 x 75mg a day,as it seems to wear off quickly. I didn't expect to be on the full dose after only approximately 6 weeks.
Something weird is that i have gone on a hike and i have jogged a short distance just to see if i could ( and i could). BUT i still can't stand still at all. Standing at the sink or the washing line or fridge is a definate no. It is so bizzare to me.
A friend of mine mentioned to speak to my dr about a combination of medications at smaller doses to see if that is possible and to me this makes sense to me. Has anyone tried this? Lyrica and something else?
So thats my update and i hope you are all fairing okay.
jolarson
Posts: 77
Joined: Fri May 02, 2008 5:49 pm
Location: orange county, ca. usa

Re: A new leg to my journey

Post by jolarson »

Hello again......thought I'd mention that one of the meds I was given was Lyrica which I could not tolerate and it did not help my standing etc. The side effects were much worse than POT, if that is possible. I also was given Topomax, gabapentin, buspirone and clonazepam. There were others which I threw out and don't have the names. All made me very sleepy which I could take in small doses but then my mental state became totally confused, almost incoherent. The doctor immediately took me off them. The only med I now take is clonazepam in a very small dose and only when I need to go out where I have high anxiety and stress. It only helps the stress factor and I still am unable to stand.
CherylM
Posts: 6
Joined: Wed May 27, 2009 3:43 pm

Re: A new leg to my journey

Post by CherylM »

My presentations are done! I STOOD and talked for 30 minutes on one, 45 minutes on another and the third was a combination of walking/standing for 20 minutes. I did it! I was nervous and my legs had that heavy feeling, but I didn't shake, didn't feel like I had to sit, nor did I feel exhausted afterward. (By the way, I got A's on all 3!)

So my current dosage of Lyrica is 150 mg. twice a day. I have been on this for about 2 weeks now and I think I'll stay right here.

Side effects: not much of anything anymore. I haven't gained weight and still have my hair. I am tired in the a.m. but as soon as I have that cup of coffee - I'm good to go. I am taking vitamin supplements but nothing else. I take a multi-vitamin and extra B complex along with Vitamin E at night.

I'm still loving Lyrica!
CherylM
Posts: 6
Joined: Wed May 27, 2009 3:43 pm

Re: A new leg to my journey

Post by CherylM »

I haven't posted for a while and just wanted to give another update. I am still on Lyrica 150 mg twice a day and it is still working wonderfully for me. I can stand for extended periods of time and hardly remember what the tremors feel like anymore.

I have gained a few pounds so my Dr. put me on additional meds to counteract the weight gain. I am also taking Topirimate 25 mg twice a day. I've lost 2 pounds so far (after 3 weeks of taking it). Apparently the medication is used at weight loss clinics now but was originally intended as an anti-epileptic drug similar to Lyrica.

The back pain I experienced earlier presented a challenge for several months. I saw a chiropractor, iced my lower back, took Motrin, and did sit-ups constantly. Nothing seemed to take the nagging pain away until I discovered a particular exercise. I use a yoga ball and roll forward on it to stretch the back out and then roll side to side to get the kinks out. That's it. It takes care of the back pain. I still do the sit-ups and am strengthening my back now.

I am still a bit tired and woozy in the morning after I take my medication but feel just fine after I get a cup of coffee in my system. I sleep very well. This has been a wonderful side effect. I haven't had a sleepless night in over 9 months (since I've started Lyrica).
lorna
Posts: 29
Joined: Mon Feb 09, 2004 8:28 am
Location: Victoria, Australia.

Re: A new leg to my journey

Post by lorna »

I have just read Cheryl's post and found it really interesting with Lyrica. I have been on Lyrica for 6 years but I only take 75mg once a day, I have increased the dose but found no difference in standing time for me. But when I went on Lyrica ( I remember it like it was , yesterday), I did not sleep for one month, ended up taking sleeping tablets for a while.

I just proves that medication does work so differently for each person. I find I am very bloated and wonder if its the Lyrica, and will asked the GP about Toririmate as I too am overweight.

I have recently returned from a 43 day cruise, and just want to say the queues nearly drove me mad. 2000 people had to board the first day and I freaked when I saw the size of the queue, I went up the front of it and an attendant asked if I was ok and said I cannot stand still, so he called me through and I went on board in a wheelchair. One had to queue for everything, for food, immigration, buses, etc., never ending when going ashore and reboarding. There were a lot of people on board with wheelie walkers, walking sticks, all I took was my three legged stool (my life saver), I could have sold it times over. I do not know how the people with walkers got on and off the ship, at times it was difficult (may be they stayed onboard).

I must share this with you, a lady I got to know said to me one day, "oh I was talking to a person today and they said that they had seen a woman come onboard in a wheel chair and now she is walking around the ship". I replied "they were most probably talking about me". So there, if you cannot see a disability you don't have one in some people eyes.

Cheers to you all and hope the New Year is a healthy and happy one. Lorna
steven1660
Posts: 2
Joined: Fri May 18, 2012 1:05 am

Re: A new leg to my journey

Post by steven1660 »

Hi, I'm new to this forum. I do not have OT myself, but my 90 year old grandmother was just diagnosed with it! She is very active and is now frustrated with the quality of her life. She tried gabepentin, but the side effects were just too much for her. I've read that some of you have tried Lyrica with great results and the side effect don't seem as harsh as gabepentin. Should she tell her doctor that she wants to go on lyrica? I would love to hear from some of you who are on it and how it has effected you. Thank you very much.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: A new leg to my journey

Post by gloria »

Steven: Thank you for registering to help your grandmother with her OT. As far as Lyrica is concerned there has been a mix review from some of our OT people over the years and you have probably read them. I have been on gabapentin for 11 years and have found it only quiet's my symptoms as do most medications at present and unfortunately there is nothing on the market that makes our symptoms go away completely. I do know when I skip my dose I do not cope as well. However I hope the website will provide other coping skills that will help her. Gloria
steven1660
Posts: 2
Joined: Fri May 18, 2012 1:05 am

Re: A new leg to my journey

Post by steven1660 »

Gloria: Thank you for replying. We are all very frustrated, because 6 months ago, she wasn't as bad as this, and it has progressed. She's a very strong person, and has a lot of energy. There are mixed results on all of the medication. A few people said Lyrica helped A LOT and a few people said it didn't. I guess it's just trial and error to find out what works for you. She also is very unbalanced. She had an MRI and was in fact diagnosed with this tremor. I hope her neurologist can help her. I want her to be better! I want her to try any medication that might help a bit. People on here who are taking Lyrica claim that the side effects are not too bad. But, i don't know. I just hope something works for her.
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