What is it ?

[Heatherlss]

Hi guys,

Back with yet an update. Seemingly, the no of posts have been getting up and up from my end. Hope you all don't mind it.

Now on day 35-36, actually can't keep count of it now, there have been some changes to my condition. I no longer get RLS in the afternoon, not even a slight feeling, which is a huge relief while I'm also not getting any RLS early in the morning( early in my life is 6:30am), which is a huge plus again.

After long discussion with my GP, he did agree to increase the Gaba to 300; however, has suggested that if this doesn't work in a week or two then I should go back on Pramipex again.

For the last 3 days, I had quite some reasonable nights. One of those nights I even managed a 6hr sleep (4 of which was unfragmented). The day before I slept for 5 straight hours so I figured that the endemic might be settling. However, last night was torture again. I did manage some 3-4 hours of fragmented sleep however, the RLS was incessant. Eventually, I dozed off at 6ish in the morning to wake up at 7:30 after having woken at 3am with a breakthrough RLS.

Now, one of these things I don't quite understand is if this is my new baseline. Because, before starting any med for RLS, I used to get only mild for an hour or so and I didn't need to get up and walk to feel better like I do now. Also, the intensity of RLS when it is there is quite huge. I can't lay down and when I do my legs are flying.

What do you all think about this ? I'm quite eager to know.

UPDATE: Well I was wrong about my RLS' improvement. Had it all night last night with 2hrs sleep. Got RLS in the afternoon as well as early morning. Moreover, met with yet another neurologist who just wrote a prescription for Requip. I feel like there's no getting out of this now. Is there a possibility that Pram has done a permanent damage and I might never return to those good old days.

[Hidden]

I think you are still having the withdrawals, where the RLS gets intense, but i am happy to see you are getting at last some good sleep. The increase in the Gaba might be now enough to see you through, to where you can sleep even better, 300mgs is still a low dose. Please please do not go back to taking the pramipexole., all that hard work will be undone, you have come far and going back is not the answer, the prami would work again but not for long, and then again you will go through all this agony again.

[LotteM in reply to Hidden]

I second Elisse2’s remarks. Please heed her advice.

[Heatherlss in reply to LotteM]

Oh my god! Still withdrawals. Getting ready for another messy night ahead.

[LotteM in reply to Heatherlss]

Or maybe not? Just see how it comes, one night at a time.

[marsha2306]

Don’t go back on Mirapex!!! It’s a dangerous drug! I go to Dr. Christopher Earley at Johns Hopkins...he is one of the most renowned RLS specialists. When I went to him in June I was already taking 1200 mg of Gabapentin and he said that’s still not even a high dose. Don’t be surprised if 300 mg isn’t “doing it” for you. You can certainly take more.

[Heatherlss in reply to marsha2306]

Hey marsha,

you give me hope. I have asked for an increase in the dose but it could be that I'm still going through withdrawal so this might not help so much. Nevertheless, going to take a higher dose soon

[marsha2306 in reply to Heatherlss]

What time do take it? Initially I took it at 11:00 and the doc told me to take it earlier so that it gets in my system. So I started taking it at 8:30. Now I actually take it at 7:00 so I’m not up so late.

Another thing the doc said is don’t go to bed when you’re just really tired. Wait til you’re really sleepy.

[Heatherlss in reply to marsha2306]

I have been taking at 9pm. 8:30pm at times. My GP has been reluctant to up the dose let alone talk to me about time the med might take. I'm really having trouble finding a good doctor who is willing to listen and talk to me about this. Meanwhile, the daytime symptoms made a comeback today for a brief period like 10mins but they did come so I guess the withdrawal isn't going so well after all.

[marsha2306 in reply to Heatherlss]

In my opinion you need a sleep specialist or neurologist who is trained in RLS. Seems your GP isn’t familiar enough with this.

[Heatherlss in reply to marsha2306]

I'll go see a sleep specialist tomorrow. Hopefully, he'll be able to treat this in a way that doesn't involve DAs

[marsha2306 in reply to Heatherlss]

Hope he doesn’t. There are other things you can try, especially increasing the Gabapentin.

[Heatherlss in reply to marsha2306]

Went to a new one and he wrote me a prescription with a combination of gaba and requip. I don't know what to do.

Meanwhile, my daytime symptoms are back.

[Hidden in reply to Heatherlss]

You DONT take the requip. You can increase the Gaba. You are on a low dose and its not enough now.

[Heatherlss in reply to Hidden]

He was not very welcoming when I said that isn't this another DA. so I couldn't speak up. I will suffer for another 2 days before I see another Neurologist who happens to be a big deal in my city. Hopefully, he would be a little down to earth. I will take all the printouts for an iron infusion as I hope it does the trick. Till that time, I just hope I get some sleep. Last night was awful by all means and its 2am tonight and I'm very much pacing again.

marsha2306 : Hi Marsha, I do not know. He wrote a different brand for Gaba that I could not recognize at that moment. I could however recognise the Requip but he didn't listen.

[Hidden in reply to Heatherlss]

If you have been giving Gaba by him, what is stopping you taking any? The brand name shouldnt make any difference, its still gaba. How much are you taking now dose wise, and what dose has the latest one given you. ? You need to speak up, tell the next one you see you cant take any of the DA's they are making you ill. If you get offered another DA then dont say isnt this another DA, Say they make you ill, you cant take them.

[marsha2306 in reply to Heatherlss]

I agree with Elisse2. You should not take Requip. Why would he not increase the gabapentin???

[involuntarydancer]

It sounds to me like your symptoms are likely to settle a good bit more over the coming days and even weeks (as Elisse says). I think your baseline is likely to be appreciably better than your current symptoms. You have showed incredible resilience to get this far and it would be a shame not to see it through as it is likely to continue to improve. In your shoes I would not even consider returning to any dopamine agonist drug (eg pramipexole) - most particularly not at this stage. To do so would render useless all the suffering you have undergone to date.

I think it is reasonable to increase the gabapentin at this stage and given the length of time since you took the last pramipexole, you may well find that it helps appreciably.

[Heatherlss in reply to involuntarydancer]

I think that I'm still suffering from withdrawal symptoms. I don't imagine anyone has RLS like this at any stage. I have asked for an increase in gaba dose but he hasn't responded yet.

The problem with me is that no doc seems willing to write a prescription for anything other than DA. My GP happens to be a friend so I have managed to convince him so far but there is a limit to what he shall agree to as well.

I do not want to go back on DA as well.

[Parminter]

Did I post this link Heather? It is very hopeful

In the 'Discussion' section it says this -

' The outcomes of the two approaches turned out to be quite similar quantitatively with the mean time until augmentation resolved being 12.5 (range 1-43) weeks for those treated with sudden withdrawal and 11.2 (range 2-23) weeks for those treated with gradual titration.'

You are at about five weeks, so you still have every reason to hope for further, steady improvement.

ncbi.nlm.nih.gov/pmc/articl...

[LotteM in reply to Parminter]

Parminter, thanks for finding the paper and posting the link. It may prove very useful for those with augmentation and needing to inform their doctors of how to treat it. Ranges of withdrawal were very different between the patients, though, from one week to almost a year. Rather similar to experiences shared here.

@Heatherrrls: keep faith and please don’t return to the pramipexole (or ropinerole or Neupro).

[Parminter in reply to LotteM]

It is interesting, is it not? It was published in 2015, so it really should be common knowledge in the medical profession. But I suppose no-one reads Open Neurology. Sad.

[Heatherlss in reply to LotteM]

Hi LotteM, I'm keeping faith and battling but you know how hard it is. I want to just cut my legs for the night and put it back up in the morning. Wish we had something like that.

Parminter : I hope so. There has been improvement in the sense that some of those symptoms have subsided. But the night is still full of torture with little breaks. I hope there is light at the end of the tunnel.

[Bajatom]

Gabapentin did not help me until I got up too 600 mg/night. I get 6 hours sleep/night most nights. Fifteen minutes of easy yoga stretching late afternoon or early evening helps a lot.

[Heatherlss in reply to Bajatom]

is this your experience post withdrawal ?

[Sara_2611]

glad you are getting some sleep

[Heatherlss in reply to Sara_2611]

Hi Sara,

I'm glad that I am. Fragmented but yes little. *touchwood*.

The daytime symptoms made a comeback today so thats not good news.

[Heatherlss in reply to Heatherlss]

Talking about sleep. Haven't slept since 11pm. It's currently 3:15am where I live. Doesn't look like any sleep is on the horizon. This feels awful.

[Sara_2611 in reply to Heatherlss]

try to keep positive