Help needed asap

[Didi1964boo]

Hi all I’ve been suffering from RLS since I was pregnant on my youngest 8 years ago, the past few years it’s got worse. It’s got really bad now it not only affects me at night but daytime too I have at least 2 attacks a day. I’ve been on pramipaxole which helped a little and then was out on amytriptiline which did work but caused me severe sleep issues where I couldn’t get out of bed to take my son to school I tried taking it earlier but still had the same affect, I was recently told I had a folic acid and Vitamin D deficiency which I know can make things worse and I am on medication for this but I’m hoping someone can give me some tips on managing it as it’s affecting my daily life and I’m a student so you can probably imagine how difficult it can be with RLS. Any advice would be very much appreciated and T.I.A

[SueJohnson]

Amitriptyline is known to cause worsening symptoms in RLS. A safe antidepressant is trazodone. It sounds like sinse you are are having symptoms during the day that you are suffering from augmentation on pramipexole. 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 when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. 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 as yours obviously isn't or they never would have prescribed pramipexole at

Https://mayoclinicproceedings.org/a...

Pramipexole used to be the first line treatment for RLS but no longer is. Gabapentin is. You would be wise to switch. 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.. But in the long run, you will be glad you came off it. On the gabapentin, 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 it 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." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.

[Memmy in reply to SueJohnson]

Thanks for all the good advice. May I ask why you recommend gabapentin and not pregabalin. Do you think it is better

[SueJohnson in reply to Memmy]

I recommend gabapentin because you can increase by smaller amounts. Once one finds the dose that controls their symptoms, one can switch to pregabalin by dividing the gabapentin amount by 6 if one wants to. They are basically the same. The only real difference is that with pregabalin one doesn't have to divide the doses but can take it all at once. The side effects are basically the same but some people find that if a side effect on one bothers them, it doesn't on the other.

[Nightwalker6 in reply to SueJohnson]

I hate to burst the bubble, Gabapentin is a terrible med. it caused severe headaches and on top of that was intense rage. I work as a therapist so absolutely cannot have meds like this that change my psychology dramatically. I approached the Health Complaints Commissioner regarding the lack of monitoring from the prescriber & his complete disregard for duty of care in the treatment & prescription of psychoactive medications. He is a sleep specialist but did not check in or make himself available to ensure I was able to adapt to these dreadful medications. Complete lack of warnings. He also failed to manage my DAWS. So little care. I am sorry to hijack your thread & I understand that the MAYO clinic algorithm recommends Gabapentin, but it is not a safe med.I have found treating my post menopause symptoms (ie hot flushes etc) with a patch and CBD/THC oil have helped tremendously. Prodeine also helps.

[SueJohnson in reply to Nightwalker6]

I am sorry you had such severe side effects. For most people, however, this is not the case and it can work wonders. But definitely as you point out, doctors need to tell patients of possible side effects and monitor them. I hope you changed doctors.

[SueJohnson]

Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[Madlegs1]

It is most likely to be due to iron insufficiency, because your gorgeous baby stole a huge amount of iron from you before it got born.See Sue's answer for what to do.

Good luck.

[Didi1964boo]

Thank you all so much for your advice, you’ve been very helpful. I can confirm I haven’t had pramipaxole for around 4-5 months now oddly enough that’s when my symptoms got worse so I will discuss with my doctor to see what my best options are. Again thank you all very much appreciated x

[Didi1964boo]

I also forgot to mention that I’m currently taking 200mg sertraline for depression mornings so I’m not sure if that could affect it as it was increased recently.

[Hidden in reply to Didi1964boo]

Hello there!I took sertraline and it made my RLS so much worse... I stopped taking it and although it's not gone away ( take oxycodone now) it's better than it was.

[Hidden in reply to Didi1964boo]

Should have said good luck to you !

[Su1980 in reply to Didi1964boo]

Hello, I also had a bad experience with Sertraline, it made my RLS so much worst. Now I take Wellbutrin and it helps with depression without making RLS worst.

[Joolsg in reply to Didi1964boo]

All anti depressants worsen RLS except trazodone and wellbutrin.Sertraline is on the list of meds that worsen RLS.

Sadly, doctors have zero knowledge of RLS or the long list of meds that can trigger it.

It's why we have to do our own research.

Switch to wellbutrin and it will hopefully help the depression and it doesn't make RLS worse.

[SueJohnson in reply to Joolsg]

Actually there are other antidepressants that are safe including Norpramin (desipramine), Pamelor (Nortriptylin) and tianeptine (Stablon, Coaxil) although Wellbutrin and trazodone are the best.

[Lucyliu101]

Hi,there! My name is Mitzi. One of my sons gave me a weighted blanket. I sleep so much better with it!

[SueJohnson in reply to Lucyliu101]

You mention on your profile that you are having worsening symptoms about 45-60 minutes after taking my 5 mg dose at bedtime. What medicine is that?

[Didi1964boo]

Thank you everyone I’m going to talk to my doctor about switching my sertraline seems like that maybe the issue, I can’t take opioids so can’t use them, has anyone ever tried CBD I’ve heard alit of stories of ppl with RLS using it and it’s really helped, I also did my own research on it and it hasn’t been approved yet but all reports say they think it helps, has anyone had any experience with CBD xx

[Nightwalker6 in reply to Didi1964boo]

I use CBD/THC oil regularly. It helps a lot. I get a prescription from a GP. Unfortunately it’s very expensive but you can make your own if you can access the plant.

[Nightwalker6]

Hi Niepowiem, what sort of cooling pad & where can I buy it? Thanks, A

[Nightwalker6]

Thanks. Small one from freezer.. is that a separate cooling pad or freezer cold pack? I’m a bit Confused.Cheers