Should I or Shoulder I?

[iliv2golf]

I'm 73 years old and I have been dealing with restless leg since I was 40. I was first prescribed Mirapix and was on it for a long time. It worked just great. At some point, with a different doctor it was changed to Pramipexole but it worked just as well. But just recently, with a new Primary Care doctor, he winged me off of Pramipexole and I am now on Gabapentin. I am in total hell. I have not slept in days and I hurt practically all day long.I have been messaging him but finally found out he is out of town. Just my luck. When I spoke with his assistant I was told to increase the med from 100mg, then 200, then 300, then 400. I stop at that. I don't no this medicine and that is why I joined this forum. People who have this syndrome and actually take these medications no far more about the effects and side effects than the doctors that prescribe them. My entire body is jerking, I mean from my head to my toe. I constantly kick, jerk, move. I'm in constant motion. I'm sooo tired and of course I don't get more than an hours sleep. The tremors in my arms are something new to me and they have to be moved to interrupt the pain. I have dry mouth, diarrhea, loss of appetite, and memory disruption. Is this the medicine for me?

[SueJohnson]

If you stopped the pramipexole cold turkey, which by the way is the same as Mirapex, it is no wonder you are having big problems. Was there a reason your doctor took you off pramipexole? Were you suffering from augmentation? (The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. ) If not and it was controlling your symptoms there was really no reason to change although it is no longer the first line treatment for RLS. If you came off it cold turkey, I would go back on it at the dose you were on. Then to come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off pramipexole for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

[iliv2golf in reply to SueJohnson]

Sue, thanks for your reply.I'd like to give you a clearer account of my situation so maybe I can figure out why the gabapentin is not working for me. First of all this is a new physician for me and my main complaint was feeling tired and fatigued, no strength to complete the simplest of task. I do take a vitamin B12 tablet but seemed to have no effect. I have been taking miraplex for a long time and with good results. The doctor decided the miraplex was causing all my problems. I was only taking 0.50 mg. So this is what he did, he ordered 3 bottles of medicines. The first was Miraplex 100 mg to be taken 3x a day for 7 days (that's 300 mg a day for 7 days vs the 0.50 mg I was on day daily), next I was to reduce the 100 mg to 50 mg at 3 x a day for seven days (that's 150 mg a day), next I was took 0.25 mg 3 x a day for 7 days (that's 0.75 mg a day). I had no problems with any of these dosages. In fact all of my symptoms I prescribed earlier went away. I was suppose to continue a reduction of the 0.25 but my appointment came due and at the appointment he told me to discontinue the lower dosage of Miraplex and start the Gabapentin. The Gabapentin dosage is 100 mg at night for 7 nights, increased to 2capsules for seven nights, then 3 caps for 14 nights. But at the very start of this medication I got no results. The 100 mg didn't phase my restless leg and I was up all night in pain. I called the office and was told to increase to 200 mg, 300mg and now 400 mg to be taken all at one time. The 400 mg is having very little to no effect. The symptoms I'm having are totally new to me, and very scary. The body is in constant movement with jerks and tremors in both arms and both legs, constant pain, absolutely no sleep, I'm fatigued and so tired, no appetite, dirreaha, blurred vision, memory feels interrupted and headaches. I reported all of this to the doctor via a email and as of right now I have had no response. I don't no what else to do. I thought about going back on the Miraplex at a higher dosage than I was on since it seemed to work so well but I'm concerned just how to get off the Gabapentin. Can I just stop taking it without any withdrawal symptoms and just start the Miraplex. Miraplex worked for me, Gabapentin does not. Any suggestions, please respond. iliv

[SueJohnson in reply to iliv2golf]

Your doctor is crazy. To increase the mirapex just so you could then come off it. I assume by the way that when you said 100 mg mirapex you meant 1.00 mg as the maximum dose is .50 that you were taking. I would go back on .50 mg and see if that controls the symptoms you are having, and if not then .75 mg, but you will then need to reduce the .75 mg to get back to the maximum dose of .50 mg. To do that reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You can then stop and try taking Modafinil a stimulant in the morning for your fatigue or continue to come off it. More later as dinner is calling.

[SueJohnson in reply to iliv2golf]

First off you need to change doctors. Anyone who would do that to you and cause such great suffering can not be trusted to give you the care you need. I don't know where you are in Illinois, but here are some doctors listed in the RLS Foundation's website:

Brandon Barton [phone] Chicago

Jesse Brown [phone] Chicago

Thomas Freedom [phone] Glenview

Roukan Jazayerli [phone] Evanston

Sharma C. Kailash [phone] Oak Forest

Benjamin J. Nager [phone] Crystal Lake

Muhammad Najjar [phone] Evanston

Puja Sethi [phone] Oak Brook

Sarah Zallek [phone] Peoria

[SueJohnson in reply to iliv2golf]

If the modafinal doesn't work for your fatigue you could try adderal. Again take it in the morning so it wears off by evening. If neither of these work, you could switch to ropinirole. 2 mg ropinirole would be the equivalent dose to ,50 mg pramipexole. In fact you might want to switch while you are on .75 mg if that is what you end up with so you don't need to reduce it to .50. 3mg ropinirole would be the equivalent. The reason your doctor took you off pramipexole and switched to gabapentin is that up to 70% of people on dopamine agonists like pramipexole and ropinirole will eventually suffer from augmentation. But if you were on it for 10 years or more, it is unlikely you will get this. Do be aware of the signs though. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

[SueJohnson in reply to iliv2golf]

It is not surprising the gabapentin didn't work. It takes 3 weeks to be fully effective and 400 mg is a very low dose. As I mentioned above, 1200 to 1800 mg is what usually is needed. And it is not going to help until you are off pramipexole for at least 3 weeks and your symptoms have settled. At this point I would continue the 400 mg of gabapentin until you are back on pramipexole and your symptoms have settled. After you have tried the medicines you mentioned and they have not helped, try switching to ropinirole as it may not make you tired. If all that fails, and you can't live with the fatigue, then you will need to come off it as I mentioned above in my first reply. For ropinirole, reduce by 25 mg. If you decide to stay on pramipexole or ropinirole, then you need to reduce the gabapentin very slowly to avoid withdrawal effects. If you do so, you won't have any. Discuss all of my advice with your new doctor. Do read the Mayo article and do get your ferritin checked.

[SueJohnson]

Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice.

[SueJohnson]

P.S. - it is not likely the gabapentin. It i much more likely the withdrawal from pramipexole. Gabapentin does not make RLS worse.

[SueJohnson]

Meanwhile, some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Jerry57]

iliv2golf,

I agree with Sue, "it is not likely the gabapentin. It is much more likely the withdrawal from pramipexole."

I went through something similar several years ago when my regular Dr. moved away, and his replacement immediately cut off my tramadol supply and put me on gabapentin. The withdrawal from tramadol was so severe that I could not tell if the gabapentin was working at all. As you say, I was in total HELL! I was thinking of suicide. This new doc would not listen to my cries for help and even stopped taking or returning my calls.

That was when I had enough. I searched and thankfully found a new doctor in a different clinic. He listened to my words without a preconceived opinion and refilled my tramadol. I am so sorry you are suffering for no good reason. I wish you well, and hope you get the help you need.

[Hidden]

Good afternoon, iliv2golf.

Sorry to hear of your woes. I agree 100% with SueJohnson and Jerry57. I experienced my Hell earlier this year (and posted at length about it on this website) following abrupt withdrawal from Mirapex a/k/a pramipexole after 20+ years of daily use. I also posted that while on DAWS, various other medicines that previously had proven to be effective had been rendered ineffective (tramadol; and Vicodin).

Neither I nor my now former "sleep expert" neurologist linked my Hell to the discontinuance of pramipexole (Dopamine Agonist Withdrawal Syndrome: DAWS). Instead, we wrongfully blamed my suffering on the very same medicine that my now former "sleep expert" neurologist had prescribed: Lyrica a/k/a pregabalin.

DAWS is behind me. My new physician re-prescribed pregabalin. With the possible exception of a dry mouth, I no longer experience the adverse side effects at the conservative dosing which we have begun.

There is light at the end of the tunnel. In my case, I took comfort in knowing that others have been there and gotten through it. This website helped much.

Be well.

[TeddiJ]

Hi, iliv. order or pick up some red vein kratom powder. it stops rls within minutes. just so you can get through the holidays and get some much-needed sleep until your doctor is back. you might want to pick it up at a smoke shop so you don’t have to wait another week and continue this hell. 

[WishICouldSleep]

So sorry you've been going through all of this. It really is hell. I agree with Sue Johnson and others that you are probably dealing with pramipexole withdrawal rather than side effects from your new meds. In my case I really did stop pramipexole cold turkey, which horrified my PCP when I told her about it two months later.

When I did my cold turkey thing I was recovering from a total knee replacement. I couldn't figure out why my RLS had suddenly gotten so much worse and was worse after I took my usual dose of Pramipexole. At the time I was trying to wean myself off my pain meds for the knee replacement. I started jerking around uncontrollably with my good leg and kicking my operative knee which was very painful. I remember lying in my bed at midnight trying to figure out which of my friends I could call who would talk me out of taking an oxycodone overdose because i was so tired and couldn't stop the jerking and i just wanted relief. I finally got smart and took my usual bedtime dose of oxycodone, and prayed constantly until it kicked in and I got to sleep. The next morning I told my husband to hide my narcotics except for one dose at a time and went online and found this site. This was how I realized that I was experiencing augmentation.

I think I got away with my abruptly stopping pramipexole because I was still legitimately taking oxycodone for my knee replacement pain, and I discovered that oxycodone is sometimes used for RLS if other meds won't work for whatever reason.

I am now taking pregabalin (Lyrica) and it is working well for me. I wish I could tell you something that would give you immediate relief besides my solution of surgery and prescribed narcotics. I'm joking a little here, but i wish it were easier to find doctors who could take the torture that is RLS seriously and knew more about how to treat it. I think you are getting good advice from others on this site. Please hang in there and know that there is light at the end of this tunnel.

[Desperate100]

I agree with Sue. I have been on 700mg of Gabapentin for about 4 weeks now, having moved up gradually from 100mg when I started taking it back in September. It has stopped the restless legs, although I still suffered badly from insomnia until about 2 weeks ago. Now I'm back to getting off to sleep soon after I go to bed at 11.30.

I have definitely not had any side effects like the ones you've described. Follow Sue's advice and hopefully you will be through this hell-ish phase soon.