Neurologist Has No Clue

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stjohnh
Posts: 566
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Neurologist Has No Clue

Postby stjohnh » Fri Oct 27, 2017 2:22 am

Hannah wrote:Hello members !!
.... I take and I told him Lyrica 175mg and pramipexole 0.75 mg. So he told me I have to increase pramipexole....


Hannah, I'm with Steve. Your pramipexole dose is already too high. The doc saying "take more" tells me the doc doesn't understand treatment of augmentation, and probably doesn't treat RLS often. Cancel your appointment and find someone else.
Blessings,
Holland

Hannah
Posts: 5
Joined: Sun Aug 20, 2017 10:34 pm

Re: Neurologist Has No Clue

Postby Hannah » Fri Oct 27, 2017 3:20 am

Steve, thank you so much for the info. I am so glad I asked the question and particularly happy with the explanation. What you said that a higher dose of Pramipexole is for the treatment of Parkinson's Disease and that is what he is basing his comment on is so true because the first neurologist who prescribed for me this dose was specialized in the treatment of Parkinson's and I did not know anything about meds and I just accepted and she kept increasing it to 0.75mg. The second famous neurologist wanted also to increase the Pramipexole and I refused and understood that she did not know nothing about RLS despite being very knowledgeable about Parkinson and this neurologist doctor I spoke to, see it also in the same way and now I understand why I arrived at 0.75mg when I started at 0.25mg and each ignorant Neurologist kept increasing it because they don't know anything about RLS and they tell you they do. They treat RLS like they treat Parkinson. Well, information is power and I did not have that power. Now I am learning, too late but... So a screaming thank you!! Hannah

Hannah
Posts: 5
Joined: Sun Aug 20, 2017 10:34 pm

Re: Neurologist Has No Clue

Postby Hannah » Fri Oct 27, 2017 2:29 pm

Holland, thanks for joining the conversation confirming what Steve wrote. Now I would like to understand to how much I can increase the Lyrica. I am taking already 175mg and after may be 4 or 6 months I have to increase by 25 mg to controle my RLS at night. Is it OK to keep increasing Lyrica without any problem. I really don't know. Can you share what you think. I would like your take on this till I find a doctor who really knows about augmentation. Thanks Holland -Hannah

JimmyLegs44
Posts: 88
Joined: Thu Oct 01, 2009 5:24 am

Re: Neurologist Has No Clue

Postby JimmyLegs44 » Sat Oct 28, 2017 2:21 pm

Hannah wrote:Is it OK to keep increasing Lyrica without any problem.


I can share my experience on this. I got off pramipexole (.375 mg) two years ago. I went to Mayo Clinic (Dr. Silber), and he prescribed 300 mg Lyrica to help with the DA withdrawal symptoms. After two days of hell, I contacted Dr. Silber and asked if I could up it to 450 mg. He consented, and I stayed at that dose for a week. The max sleep I got during that period was about 4 hours, so it probably helped a little, but I experienced some strange side effects, so I went back to 300 mg. Even at 300 mg, I had unwanted side effects, so after a couple of months, I scaled back to 150 mg. I track my sleep pretty closely, and there wasn't much of a difference in my sleep (or the way I felt the following day) between 150 mg and 300 mg, so it was a no-brainer to reduce the dose.

I've been at 150 mg for just under two years, and now I'm wondering if it's helping at all. When I couple it with Kratom, I seem to sleep fairly well (although still up 3 times/night with symptoms), but without Kratom, I'm up 4-5+ times per night. However, I haven't noticed much difference in how I feel (tired/borderline depressed) the following day (Lyrica + Kratom vs. just Lyrica). I plan on taking a drug holiday starting next week, to reset my receptors and see what my baseline symptoms are if nothing else.

I believe the "Clinical Management of RLS" book indicates that for most RLS patients, improvement of RLS symptoms occurs at a mean dose of 300 mg/day. At 150 mg I believe it helps somewhat with my sleep, but probably doesn't help much with my RLS.

Depression is a known side effect of Lyrica, and I'm sure more prevalent the higher the dose. However, with RLS I'm sure many of us are borderline depressed from lack of sleep, so hard to tell if it's that or the Lyrica.

Good luck! I hope it helps to know others have made it through this and that you are not alone.
The best way out is always through. - Robert Frost


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