1st night with gabapentin was not wha... - Restless Legs Syn...

Restless Legs Syndrome

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1st night with gabapentin was not what I expected.

gordeo profile image
12 Replies

Not anything like I expected or was told by my sleep doc. He predicted drowsiness, dizziness, tiredness, etc.

I took a 100 mg cap about 8 pm. By 9pm I felt very wired, like cocaine without the buzz (my old days long ago). Was unable to sleep even with .5mg of klonopin. Finally took another .5mg of klonopin about 3am and finally fell asleep. Awoke about 8:30 am. What little sleep I got was some of the best sleep I have had in a while. Other positive, very little RLS symptoms.

Other side effects included trouble breathing and stomach pain. Still fill a little wired (12 pm).

I plan on cutting the dose in half or by 2/3 tonight.

Question: Do you build up a tolerance very fast? I read that is true.

PS: I am new here and I am so glad I found this forum. My first post yesterday got many responses. I have learned a lot already. It amazes me how little the docs know about this disorder, even the so called sleep specialists.

I have been in a downward spiral and feel very bad all the time. Alternately since this disorder began a year ago, I have experienced anxiety, depression, OCD, panic attacks, and, of course, RLS/PLMD symptoms and the resulting sleep deprivation. I am a poor metabolizer of the meds and get the severe side effects. I hate the benzos but I cannot sleep at all without them. I need hope that I can get better, otherwise I fear the future. Thanks

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gordeo
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12 Replies

Subject to what others may say, that sounds like an unusual reaction to gabapentin. Moreover, 100mg is quite a low dose, as I understand it. It is a drug that produces quite idiosyncratic responses however and you do say that you tend to metabolise drugs poorly so maybe that explains it. In your shoes I would want to discuss this with my health carer before taking the drug again. Maybe you should phone your doctor?

Worrying that you had trouble breathing. There are warnings about gabapentin causing respiratory depression in some individuals.

Go to this link and click on "What safety concern is FDA announcing?"

fda.gov/drugs/drug-safety-a...

As regards this, I suggest you consult your doctor.

As regards dosage, 100mg is actually a very low dose even if you are a slow metabolizer and will very likely be ineffective. It also probabaly explains why you didn't experience any drowsiness or dizziness.

Additionally, gabapentin doesn't work immediately like other medicines, it takes a few weeks to fully work.

You mention cutting the dose in half or 2/3, this doesn't sound feasible. You can't cut capsules like this a) there is both powder and air inside the capsule, cutting it in half doesn't ensure you get half the powder b) if you cut the capsule the drug will be released too fast.

It's also not necessary 100mg is a very low dose, any less is not worth taking.

gordeo profile image
gordeo in reply to

Thanks Manerva.

I emailed my doc and he also says you cannot cut the capsules. I also emailed him the link to the FDA warning.

The breathing problem was concerning me last night. I was afraid that once I finally went to sleep with the extra Klonopin I took, I might have a real problem.

I really wanted this to work. Any suggestions on what I should try next.

in reply to gordeo

Assuming that you have already tried a dopamine agonist and it has failed then the next medication option is an opiate. If you read a few posts in this forum you can see that low dose buprenorphine is becoming quite popular and acceptable for RLS. In which case it's a matter of finding a doctor who's willing to prescribe it.

However, it is important to investigate why you had breathing trouble with gabapentin.

Gabapentin is known to cause breathing difficulties with people who have some problem with the central control of breathing either due to a condition or due to opiate use. If gabapentin caused you a problem, then an opiate may also cause a problem.

I think you should discuss this with a doctor.

You may receive some suggestions about taking a dopamine agonist. If you haven't tried a dopamine agonist before, (pramipexole, ropinirole or rotigotine) then I suggest you avoid using one now. These are no longer recommended as a first line treatment for RLS even at low doses. This is because they all carry a high risk of severe complications such as augmentation and Impulse Control Disorder. They are often prescribed without any warnings about these complications and so people taking them are unaware.

RLSofManyYears profile image
RLSofManyYears

I've tried various medications over the years and have now come down to two types of dopamine agonists: Ropinirole and Pramipexole. They do the same thing but I know that Pramipexole works better for me that Ropinirole. Please note that RLS affects people in different ways and that whilst some treatments work for some folk, they don't for others.

Here is a link to both the treatments used in the UK and also, very helpfully, the typical dosage and times to effective treatment e.g. some are immediate e.g. Pramipexole whilst others are several days e.g. Ropinirole.

Gabapentin seems to be used like Pregabalin (I take 100mg of this as well) which is used more for relieving the symptoms like itching, soreness, etc that you can get on arms/legs.

The unfortunate thing about dopamine agonists is that the more you take the more you will need as your body builds gets used to it. There are strict maximum levels though and going up/down in doseage should be taken in small amounts over a period of time (It took me a year to get down from the maximum 4mg of Ropinirole to the minimum of 0.25mg - no way am I going to go that high again!) However as a result I do have nights of no sleep at all or perhaps being woken up every hour, then up for an hour, back to bed then woken again...

My advice is to talk to others and your doctor and try to work out with the doctor what works best for you. It may take some time but keep going. Oh, and finally, work out what what triggers the symptoms e.g. I'm an alcohol free zone now as it definitely makes my RLS worse.

All the best.

in reply to RLSofManyYears

Hoepfully whoever prescribed you pramipexole or ropinirole warned you of the high risk of complications of taking a dopamine agonist, i.e. augmentation or Impulse Control Disorder.

If you are unware of these then it would be a good idea for you to find out more about these severe complications.

Alpha 2 delta ligands (A2D), i.e. gabapentin or pregabalin are alternative medications for RLS and can be used instead of a dopamine agonist. Many people, like myself, take only an A2D which controls my symptoms without the risk of augmentation.

RLSofManyYears profile image
RLSofManyYears in reply to

The side effects were made very clear to me by my consultant and in all follow-up interviews. The only issues was Augmentation & Rebound which are inevitable with dopamine agonists, which are the only medications which have actually worked for me. I have been up to 300mg Pregabalin daily to help with the neurological pain but it did not stop the RLS (it's clear that RLS affects folk in different ways and that folk respond differently to treatments - there is no catch-all for RLS).

in reply to RLSofManyYears

Hi great to hear that you were warned of the consequences of taking a dopamine agonist as this is often not the case.

jollyjune profile image
jollyjune in reply to

What is A2D?

WideBody profile image
WideBody

gordeo, welcome. This is a great place. I have a question. Has anyone ever tested your iron levels? I mean a full morning fasted iron panel, not the usual "my ferritin is ok"?

I had RLS 24/7 when my iron was low, anxiety and panic attacks. Just wondering if anyone has checked your iron?

Good luck.

gordeo profile image
gordeo

Thanks WideBody. My sleep doc checked it last summer, it was 55 mcg/dL. He did not think it was a problem then, but just recently put me on an iron supplement Vitron-C.

sargrith profile image
sargrith

You need to see a Psychiatrist asp. It is in their field not a so called sleep specialist

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