Can some one help me please?

For everything and anything else not covered in the other WED/RLS sections.
ymgap
Posts: 2
Joined: Sun Jul 07, 2019 2:51 pm

Re: Can some one help me please?

Postby ymgap » Wed Jul 17, 2019 9:32 am

After a week with horrible symptoms, I broke down and took 900 mg of gabapentin. Is anyone on that dose or higher? I’ve had RLS for 20 years and have gone through all the typical meds. I’ve augmented on all of them . Two nights ago it also affected my arms so I was desperate.

stjohnh
Posts: 884
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Can some one help me please?

Postby stjohnh » Wed Jul 17, 2019 2:15 pm

ymgap wrote:After a week with horrible symptoms, I broke down and took 900 mg of gabapentin. Is anyone on that dose or higher? I’ve had RLS for 20 years and have gone through all the typical meds. I’ve augmented on all of them . Two nights ago it also affected my arms so I was desperate.


First, to answer your question, yes, lots of people take 900mg or more. Gabapentin dosing varys from person to person more than most drugs. I can't take more than 150mg. But some people need 2000mg.

Looking at your post of 7/7/19, I'm a little puzzled. At that time you said you were on Horizant and pramipexole. Are on those in addition to gabapentin?

If still on the pramipexole at 1mg, your worsening symptoms are likely due to augmentation. That is where the RLS worsens in spite of higher doses. Let us know more about what is going on with you so those here can offer the best advice.

Have you had intravenous iron infusions? RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

badnights
Moderator
Posts: 5248
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Can some one help me please?

Postby badnights » Sun Jul 21, 2019 6:30 am

@evertking - -
IF you're taking ropinirole or mirapex (or rotigotine/Neupro - these are all dopamine agonists) you must be sure your ferritin level is not too low, and you should definitely read up on augmentation.

Unless you're susceptible to iron overload, you should probably supplement with oral iron if your ferritin concentration is anything less than 100. If your ferritin is under 50, you stand a good chance of augmenting from the ropinirole. No doctor should have given you that without first trying to raise your ferritin (actually, your brain iron - if our ferritin is low, it means that somewhere in our body, iron stores are low. RLS/WED is known to be linked to low iron in the brain). For some of us, taking oral iron or (more effective) getting iron infusions is enough all by itself to make the symptoms improve.

Also as the others have said, start with 0.25 daily. Don't try to completely eliminate your symptoms, and don't go above 1 mg. And only in the evening! I have no idea why she would recommend it in the morning as well, unless she thinks there is no difference between WED/RLS and Parkinson's just because the same medication can be used for both.

I'm glad you're finding a new doctor but I'm worried about the length of time that might take, and that you might meanwhile be taking ropinirole while your ferritin is low. Please be careful. If you notice any signs of worsening - symptoms in your arms, or getting more intense, or starting earlier in the day - you should probably stop the ropinirole right away.
(If you do stop, you may notice even worse symptoms that's part of the augmentation and withdrawal, and will go away in a few days.)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
Moderator
Posts: 5248
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Can some one help me please?

Postby badnights » Sun Jul 21, 2019 7:34 am

@ymgap - - I've quoted from some of your posts in another Topic here:

I’ve had RLS for 15+ years and have a great doctor.
No, you don't. If you had a great doctor, you wouldn't be suffering like this.

I have a message in to my doctor to see if I can switch back to Requip, even though I had augmented to the highest dose. I’m hoping that since I’ve been off of it for awhile, I can take it again.
and has anyone gone back to a medication and did it work?
1. It won't work. You are still augmented. I bet when you switched from Requip to pramipexole, you didn't wash out of the Requip first? (a period of 7-10 days with no dopaminergic medication - no Requip, no pramipeoxle, no Neupro, no Sinemet). If you don't wash out, you ARE STILL augmented from the previous medication. Switching does very little to help in that case.

2. The others have said this already. I will repeat it. You've already augmented on Requip and pramipexole, so you are very very UNlikely to have any luck going back to Requip. It will not help. None of the dopaminergic meds will help you.

What is your ferritin concentration? Have you ever had it tested? If your ferritin is low, you should not take dopamine-type meds. You should take iron, preferably by IV.

Do not assume doctors know a lot about this disease. Most of them don't.

I broke down and took 900 mg of gabapentin. Is anyone on that dose or higher?
I was on 1800 - 2100 daily at one point. It was not a good time in my life, but that was me. For you, if you can use the gabapentin to help, do it. The problem is that you are augmented so nothing is really going to stop the symptoms. There just isn't an easy way to do this, the doctors have no magic pill. Treat augmentation by
- getting off the dopamine med
- keep ferritin high
- use kratom or a doctor-prescribed opioid to get through the withdrawal, which consists of even worse symptoms.
- don't expect anything of yourself for a week while withdrawing from the dopamine med
When it's over, you will have better symptoms - maybe same as before you started any dopamine meds. (if you;re lucky)

So my questions are how can I convince my husband that my suffering is real
I offer this: sometimes people listen better when it's not their loved one they're listening to; they’ll listen to someone who seems authoritative but for whatever reason, they have shut off their listening circuits for their own wife or husband. So download this pamphlet from the RLS Foundation that explain RLS/WED (Restless Legs Syndrome – Causes, Diagnosis and Treatment). (If you can't download the link, it might not be one of the free ones -see the end of this post. )

Highlight the first paragraph, and then ask him for his full attention. Tell him you have something important that you need for him to know. Tell him
“I feel we’ve grown apart a bit recently because I can’t do much anymore, and I sense that you don’t really know why. I printed this for you, because it explains what my disease is, and how it affects my life and our life together. After you read it, I want to ask you for your help. There’s things I can do but I just don’t have the energy, or I don’t understand, so after you read it, I want to see if you’d like ot help me with some of this”

After he reads it, or at least the first two paragraphs, you can explain that you have no energy from the sleep loss, which also makes things hard to understand, and you can’t focus on conversations or even on books when the symptoms are alive in you. Point to the second paragraph, where it says there are treatments, coping strategies, and support resources. You want his help getting at those resources. Some of it you’ve done by yourself, you’ve found a discussion board. But you want his help in finding out more about augmentation, and why these people on the board keep telling you not to take the dopamine medication, and what are you supposed to take instead? He doesn’t have to do the work for you, but if he knew the kinds of questions you needed answers to, he could help.
Maybe he would help find answers. Maybe he would offer opinions on what you’re learning about. Maybe he would just get a better sense for what you’re suffering through day after day.

The publication page is https://www.rls.org/member-portal/publications. Some of the publications are free to non-members but most you need to join the Foundation (a 35$ subscription fee, or ask the Foundation for a scholarship if you can’t afford that). It’s well worth it, there are a lot of really good pamphlets and brochures, including the fantastic Medical Bulletin (hiding at the bottom in the section for HEalthcare Providers, but very useful for patients too).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

leggo_my_legs
Posts: 343
Joined: Sun Oct 16, 2016 12:29 am

Re: Can some one help me please?

Postby leggo_my_legs » Thu Aug 22, 2019 4:18 am

If you are taking gabapentin irregularly and at inconsistent doses, that could be compounding your problem. During gabapentin withdrawal, I had increased restlessness, muscle spasms, etc. You may not have had enough of it to cause a similar withdrawal reaction, but it's worth mentioning.


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