gabapentin. 600mg. Tapering off

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snodove3
Posts: 6
Joined: Mon Apr 14, 2014 8:37 pm

gabapentin. 600mg. Tapering off

Postby snodove3 » Thu Apr 19, 2018 11:56 am

Hello, I am taking 600 mg of gabapentin at night for leg and foot cramps at night.
I find it doesn't work well anymore. My doctor is having me taper off the medicine.
I would like to know of any side effects about tapering off gabapentin. I have read a lot online.
I need to find something else to take. I have tried so many things for relief and none work well. My legs and feet hurt so bad. Sometimes 4 times a night. I get up and strength. I find for short time relief otc products work til I wake up with pain.
Very frustrating. I take magnesium and potassium pills prescriptions. My former doctor said I had RLS but my doctor now thinks my leg cramps are just diabetic related. I think maybe diabetics lead to RLS. My iron has been low.
I got off topic a little . But has getting off gabapentin been difficult for anyone. Thank you.

stjohnh
Posts: 565
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: gabapentin. 600mg. Tapering off

Postby stjohnh » Thu Apr 19, 2018 2:16 pm

Hi Snodove, welcome to the RLS community. Even though it doesn't sound like you have RLS, lots of folks here do have considerable experience with gabapentin and may be able to help. The 600 mg of Gabapentin you been taking is a relatively low dose and if it was working in the past I am wondering why you don't just increase the dose or discuss with your doctor increasing the dose.

I am also wondering about your diagnosis. From your description it doesn't sound like you have either RLS or diabetic neuropathy. If your current doctor can't explain the rationale behind his or her thinking, it may be worthwhile for you to get a referral to a neurologist to be more clear about what is actually causing your problem.
Blessings,
Holland

snodove3
Posts: 6
Joined: Mon Apr 14, 2014 8:37 pm

Re: gabapentin. 600mg. Tapering off

Postby snodove3 » Thu Apr 19, 2018 2:26 pm

Thank you Holland. My former doctor where I used to live had treated my leg cramps and symptoms for yrs. As time has gone on I have had worse symptoms during the day as well. Right now my legs crawl and moving helps sometimes.
I am on Tizanidine 4mg and Cabidopa-Levodopa 25-100mg for at least 5 yrs. My formulary doctor did blood work and my iron was low. And he said I had RLS
But my Dr now thinks it is just from Diabetes but I need relief. Thank you and will keep searching for help

My doctor I have now would not increase my gabapentin. It was not helping so I wanted off of it.

stjohnh
Posts: 565
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: gabapentin. 600mg. Tapering off

Postby stjohnh » Thu Apr 19, 2018 3:38 pm

You're on a complicated combination of medicines for what seems to me an unclear diagnosis. If you have RLS and your ferritin is less than 75 then certainly you should get your ferritin up at least over 75 and preferably over a hundred by taking ferrous sulfate tablets along with vitamin C tablets.

Additionally if you have RLS and you are taking carbidopa-levodopa there is a good chance you may be augmenting. More and more from what you say I think that your best course of action would be to request a referral to a neurologist for further evaluation.
Blessings,
Holland

stjohnh
Posts: 565
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: gabapentin. 600mg. Tapering off

Postby stjohnh » Thu Apr 19, 2018 3:42 pm

The basis for diagnosing RLS is a combination of symptoms that includes an urge to move the legs that occurs primarily in the late afternoon and evening, usually not painful, and only goes away by moving the legs. Also, except in very severe cases, this problem does not occur at all in the morning. Relief is almost instant when moving the legs, but comes back right away if a person with RLS sits still or lies down.
Blessings,
Holland

snodove3
Posts: 6
Joined: Mon Apr 14, 2014 8:37 pm

Re: gabapentin. 600mg. Tapering off

Postby snodove3 » Thu Apr 19, 2018 6:37 pm

Thank you guess it is useless for me to be here.

ViewsAskew
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Re: gabapentin. 600mg. Tapering off

Postby ViewsAskew » Thu Apr 19, 2018 8:05 pm

snodove3 wrote:Thank you guess it is useless for me to be here.


I don't think anyone is saying that. I think we are saying that we need to determine the "true" cause of the problem and then solve it.

Have you ever answered any questions related to RLS to determine if that is what you have for sure? It can seem similar to cramps or neuropathy, which can make it hard to tease apart. And some people have both!

So....

What time of day do you get your symptoms?

When you get them, what helps the symptoms go away?

Do you feel like you "MUST" move or do you move because it's what we often do when something hurts?

Does it happen at certain times more than others - such as when standing and doing things, when sitting watching TV or trying to sleep, or can it happen at any time?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

snodove3
Posts: 6
Joined: Mon Apr 14, 2014 8:37 pm

Re: gabapentin. 600mg. Tapering off

Postby snodove3 » Thu Apr 19, 2018 8:27 pm

I am soiree for my reaction. Just gets hard sometimes. I have been reading more about RLS and diabetic neuropathy and at times am not sure. I do know I don't get burning needles ,and numbness in my feet .My legs sometimes I can tell will act up at night because how they feel sitting or lying down before bedtime. They usual can feel crawling occasionally then. At night occasionally they feel annoying. Moving them does not relieve this sensation. Then later at night I awake 3 to 5 times with severe pain. In the tops, back of my feet. I can move them unless I get up and that takes awhile. Or the back of my lower legs, upper leg.
I again am sorry for my response.

Polar Bear
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Re: gabapentin. 600mg. Tapering off

Postby Polar Bear » Thu Apr 19, 2018 8:51 pm

snodove3 - no need to apologise. We all understand how hard it can get. Especially when you are uncertain if you do, or do not, have a particular condition.

This is a list of questions to help decide if you have RLS.
The most important questions however are those in the post above of ViewsAskew.
1. Do you experience the urge to move?
2. Is the need to move overwhelming to the point that you cannot resist moving your legs?
3. Will the urge to move increase if you are in a confined position?
4. Do you have symptoms both sitting and lying?
5. How long do you need to be at rest before your leg symptoms begin?
6. Do your symptoms only begin when your legs are in a specific posture?
7. How quickly do you get relief when you start moving?
8. Do your leg symptoms occur when you are walking?
9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk?
10. When are your symptoms worst?
11. When you are symptoms least?
12. Do you find your symptoms are less in the morning?

One of the major criteria for RLS is that your symptoms will ease as you start to walk and move about, some easement with come quite quickly though it may take a few minutes for them to calm properly but eventually they will settle. It is likely that when you then sit/lie down again, the symptoms i.e. creepy crawlies, will start again, if it is RLS.
This is an important factor in the diagnosis of RLS.

Once again, no need to apologise. There are times when on or other of us here come on and have a rant, when we just need to vent because we feel we are at the end of our tether.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
Posts: 478
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Location: Dublin Ireland

Re: gabapentin. 600mg. Tapering off

Postby legsbestill » Thu Apr 19, 2018 9:01 pm

Hi snodove, whether or not it is rls you have your symptoms sound very difficult to live with and Holland is on the button when he says that to address them you probably need to get an accurate diagnosis.

As to coming off gabapentin, it would at least help you to assess whether that drug was doing anything for your symptoms. If you eliminate it and there is no improvement or disimprovement you will know whether or not it had a contribution to make.

I am currently reducing pregabalin which is a similar drug. I find if I reduce too quickly I get a horrible all over body restlessness so I am following a system of reducing by about 10% every 7 to 10 days. I do this by dissolving the tablets in water (10mg in 1ml of water - my tablets are 100mg so I dissolve them in 10ml of water) using a measured syringe and then measuring out a very specific dose using the syringe.

snodove3
Posts: 6
Joined: Mon Apr 14, 2014 8:37 pm

Re: gabapentin. 600mg. Tapering off

Postby snodove3 » Thu Apr 19, 2018 11:58 pm

Standstill, yes in the beginning. A yr or year and half ago my new Dr suggested gab It did help a lot but now it doesn't. I feel like I did before I started it. I agree with you on whether it helps or not. By getting off it.
My capsules are clear and small balls inside. I just don't want to go to fast . My son was on it for pain and he went cold turkey. Not a very good idea. The Dr. Told never do that.Thank you for your help. Trying to reduce the med. Slowly was my main concern right now
Thanks.

badnights
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Re: gabapentin. 600mg. Tapering off

Postby badnights » Sat Apr 21, 2018 3:04 am

Hi snodove3
Gosh you're in a tough spot! Always sucks when your doctor doesn't know enough. This is such a tricky disease.

I would guess you do have RLS/WED and have augmented from the levo-carbidopa. IF your iron is low, it is critical to raise it and to keep it up there by continuing to take oral iron. Maybe forever, or until they figure out why our bodies can't hang on to it. When you get iron work done, ask for the ferritin number. IF it's under 100, you should take iron, assuming you are at no risk of iron overload.

But you might have a couple of things going on, which makes it very difficult to figure out what's what. For instance, the severe foot pain, and the cramps might be something different, maybe neuropathies, which are common in diabetics, or something else. But here it is: If you have an urge to move when you sit or lie down, if you just want to rest but something is forcing you to get up and move, then you have RLS/WED.

And actually, if you're augmenting, it can happen in the morning, and it might not feel any better when you move around (though it has to be pretty bad for you not to feel some relief). Augmentation is a strange thing, it's when the medication that helped you at first, starts to make the disease worse. The medication lasts for less time, and when the symptoms come back, they're stronger, they start earlier in the day, they have spread to your arms, etc. IF you can think back to before you started levo-carbidopa, did walking relieve the crawlies then? And now it doesn't? Probably augmentation.

Your doctor might not even know what augmentation is. Well, I am sure he doesn't, or he would never have prescribed levo-carbidopa for daily use. And never when your iron was low.

There are 3 classes of meds used to treat RLS/WED:
1. dopamine-type meds, which you're on and which almost always cause augmentation, so specialists are now saying those medications should not be used without caution and only at low doses - and levo-carbidopa should never be used daily, because of them all, it's the most likley to cause augmentation. If your ferritin is below 75, you're way more likely to augment.
2. alpha-2-delta anticonvulsants like gabapentin. Generally not effective enough by themselves, better in combination with a dopamine or opioid med.
3. opioid meds. These sound scary but they're not, they're the only thing that works for some of us. Very low doses are usually effective.

The two most important things to do is take iron if your ferritin is under 100 and there are no reasons not to, and
find a doctor that knows about WED/RLS. Check the Foundation's web site www.rls.org and look for Quality Care Centers. See if there's one near you, and move heaven and earth to get yourself there.

Oh and a third thing, which you've started: learn learn learn. You can determine for yourself if you have WED/RLS from reading through the lists of symptoms the others have given - the key one is the urge to move. And no matter what medical issues you have, read all you can about them. Your care will be much better if you're an informed participant in the decision-making. Let us know how things go!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

snodove3
Posts: 6
Joined: Mon Apr 14, 2014 8:37 pm

Re: gabapentin. 600mg. Tapering off

Postby snodove3 » Sat Apr 21, 2018 6:13 pm

Hi Badnights, I have taken the levo-carbidopa for a long time. I appreciate your patience. I hadn't heard of augmentation. Thank you for explaining that. My old doctor where I used to live put me on levo-carbidopa. My newer doctor here where we moved kept me on it.
I am getting off the gab. And have one week left of weaning off it. One pill every other night 300mg. My dose has been 600mg. At bedtime. I have had a few side effects but not to bad can considering what I have read or watched you tube. I had heart palpitations and my skin was itching and crawling.
When I go back to my newer doctor I will ask him about augmentation. He may want me off my other meds too. I sure am going to ask him.
I appreciate your information and help. I had not been on the RLS/WED for awhile so didn't know about augmentation.
I have blood work coming up so I will ask my Dr to check my iron ,too.
Thank about the information about Gab. Too
I usually try to be careful what I take but this all got by me. I had several life changing issues. Moving and , Mom passed and my husband retired. So I just got tired up and did not be more involved in my health. Thank you again for your help!! I want to learn all I can and be more prepared in my health.
I just remembered I took Mirapex before the evo-carbidopa.


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