Relentless! : Hi! I'm back yet again. I... - Restless Legs Syn...

Restless Legs Syndrome
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Relentless!

Heatherlss
Heatherlss
52 Replies

Hi! I'm back yet again. I seemingly can't think of anything else but the torture I go through at night.

6weeks off DA and believe it or not, my RLS hass actually gotten worse than it was maybe two weeks ago when I was at least able to get some sleep. Last night was worse than ever as the electric shock like symptoms just wouldn't stop. I took 300mg gaba and 50mg tram. I know it is a low dose but I don't have any prescription for the either of them now it was my last remaining meds. Dr B has suggested that this might be the new permanent for me which is disheartening as I had been on the drug for only months. Going to see the sleep specialist who first gave me the prescription for the Pram. I would ask him to rectify his mistake which has hampered my quality of life.

Coming to the end of my sufferings as if no doctor is ready to help me with anything other than DA, I would just go back on it and wait for augmentation to strike and then get off them

52 Replies
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Elisse2

Hi Heather, i still think by increasing your Gabapentin dose and the tramadol dose would benefit you with the withdrawals which i still think is what you are going through. Going back to a DA with you only being off one a few weeks ago, you will augment quickly, taking the DA i will seem like magic at first, but that will wear off sooner than later. Then again you will be back to how you are right now, trying to wean off it and still not sleeping having worse symptoms. What other members think about this i will be watching for their opinions. I HOPE what Dr. B said is wrong altho i hate to say he is wrong as he is one of the best to turn to for advise. Did he not suggest increasing your doses of what you have been taking..? Maybe the Gaba isnt right for you, maybe trying Pregabalin might be better for you. Have you thought about asking to try Pregabalin?

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Annieapple
Annieapple
in reply to Elisse2

I agree with Elisse to increase what you are on or change to Pregabalin. In the short term if you can get some over the counter codeine until you see your Dr.

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Heatherlss

Hi Annieapple , Elisse2

Just came back from the sleep specialist. He listened to everything I said and documents I produced. However, he has referred me to another neurologist as he says that he doesn't quite have the experience with managing RLS. In the meantime though he has written a prescription for Pregablin.

I have been taking Gabapentin 300/100 for almost a month now. Should I straight away go to Pregablin or go slowly with the Gaba as well.?

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Annieapple

Glad he was helpful in referring you onwards. I am no expert but my instinct would be to get started with the pregabilin and wean off the GABA. The prega takes 3-6 days to kick in.

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Annieapple

What dose has he put you on?

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Joolsg
Joolsg
in reply to Heatherlss

They are the same class of meds so switching straight over should be fine. I switched straight over from 900mg of Gabapentin to 150mg of pregabalin.

I agree with the advice Elisse has given you. Don’t go back on pramipexole.

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Annieapple
Annieapple
in reply to Joolsg

That sounds helpful Joolsg!!

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Elisse2
Elisse2
in reply to Heatherlss

Hi, good news that this one listened to you , shame he couldnt help you further, makes a BIG difference when they listen to you and the documents you took, I HOPE the one he has sent you on to has the same attitude to listen. I dont have any knowledge on changing from Gaba to Pregab, so i hope someone can advise on that. Like Annieapple has asked what dose of Pregab have you been given, it should be a low dose to start with and increase if need be. I would like to know what Dr. B said to you, as in what advice he gave you, did he advise to increase your dose ? Or say something else. He must have given you some sort of advice , not just told you it might be your new permanent.

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Heatherlss
Heatherlss
in reply to Elisse2

Hi,

He has put me on 75mg for now. He told me to stop Gaba and take this as they contain the same salt. So I guess I'll just move on it.

Here is Dr B's response.

.

"Unfortunately, your issue may not now be a withdrawal problem but a permanent worsening of your RLS from being on a dopamine drug. We do see this in a significant (but smaller) percentage of RLS patients.

There is a reasonable chance that higher effective doses of the alpha 2 delta drugs may help your RLS but there is a reasonable likelihood that you may need opioids to fully treat your RLS (but of course, the opioids should only be prescribed after a proper attempt at getting relief with the alpha 2 delta drugs.

About 60% of RLS patients improve quite significantly with an iron infusion. We normally will treat patients with ferritin levels below 100 (although patients with even higher ferritin levels may benefit) but insurances will often not cover these infusions unless the ferritin is much lower (often much less than 30).

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Elisse2
Elisse2
in reply to Heatherlss

Thank Heather for Dr. B's advice to you, SO lets keep to the thinking of the change from the Gaba to Pregab will be the answer, your dose of 300mg Gaba was too low to help you at the end. As usual Dr . B gave you good advice on what can be tried . Give the pregab a chance to work. :)

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Heatherlss
Heatherlss
in reply to Elisse2

Hi I hope so too. If this works, I would have something to take up with the neurologist else I would have to explain all of it to him again.

What would be the right time to take Pregab if anyone could advise me on that. ?

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Joolsg
Joolsg
in reply to Heatherlss

75mg is a good starting dose of pregabalin but you may need to increase (by 25mg every 3 /4 days) to 150mg to get relief. The dose for RLS is up to 300mg. If the 75mg doesn’t help, please ask your doctor to consider upping the dose.

And as Dr B advises, make sure your iron and ferritin levels are above the recommended levels for RLS.

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Heatherlss
Heatherlss
in reply to Joolsg

I'm taking Gentle Iron every night to keep them going. They are quite low I think somewhere around 45. I'll be getting tested for it again on monday.

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Joolsg
Joolsg
in reply to Heatherlss

Where are you Heather? 45 is low enough to qualify for an iron infusion. Taking gentle iron and patches EVERY other night is better. It speeds up absorption by fooling Hepcedin ( a chemical which blocks iron uptake).

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Heatherlss
Heatherlss
in reply to Joolsg

I live in India. From all the research I've done and read through this forum, I know that an iron infusion could prove decisive. However, where I live, it is hard enough to get a doctor who would prescribe anything other than DA let alone iron infusion.

It's hard to grapple with the syndrome and then the medications and then the professionals' ignorance.

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hcinmn
hcinmn
in reply to Heatherlss

My doc recommended Iron a number of months ago and I followed through with his recommendation. I take an iron chelate called Ferrochel when I first wake in the morning and 1 hour before I eat. Iron needs vitamin C for absorption or best effect so I take my pill with a small amount of powdered Vit C crystals/crystal powder (like less than 1/4 tsp). It took about 3 months but my legs have dramatically improved. Other recommendations would be to eat iron rich foods such as:

greens/spinach, liver and organ meats (I can't stand the stuff, but I would have eaten just about anything to up my iron levels when I was at my worst...and I was at my worst so keep the faith that things can turn around!), legumes, red meat (this sometimes gave me immediate relief at bedtime so it confirmed that iron was a huge player in my relief), iron fortified cereals, etc. I hope this helps!!

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Joolsg
Joolsg
in reply to Heatherlss

It’s depressing that the drugs which were meant to help us may have permanently worsened our disease. I have long suspected this- I’m sure the DAs damage the dopamine receptors.

And I guarantee that the drug companies will refuse to listen!

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Heatherlss
Heatherlss
in reply to Joolsg

It did turn out to be my biggest mistake to ask for a drug for RLS when it was mild. Something which was not even a thing in January has become a mess in Aug. I remember I used to sleep through the night without any issues whatsoever in January. I had some problems sleeping in Feb due to some other issues went for a med for that and got a RLS med too. Since then, its been a downslide. And now that it has done permanent damage, I don't even know how to react other than crying.

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Joolsg
Joolsg
in reply to Heatherlss

I totally understand. It would seem that getting your serum ferritin above 100 would have totally resolved your RLS.

However, don’t despair- many people have had amazing results by getting their serum iron and serum ferritin high. You are probably one of those people.

Consider writing to your local hospital ( haematology department) and attach the research papers from Johns Hopkins university. Injectafer is relatively cheap and if you can afford private care, the consultant fee plus infusion would be cheaper than 6 months of meds.

rls.org/file/member-publica...

The experts in the USA now acknowledge that getting iron levels high can resolve RLS in 50% of patients. This information will take decades to filter down to GPs worldwide until we become more vocal. We need to start a worldwide demonstration about our appalling treatment (mistreatment) by the medical profession.

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Heatherlss
Heatherlss
in reply to Joolsg

Wow you are right Joolsg, I need to raise my voice. Today, this iron thing didn't cross my mind at all. I even received a full highlighted pdf from Dr B regarding Iron Infusions. Already wrote a mail after reading your message to the hospital.

Will definitely talk about it with the neuro too.

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LanaCSR
LanaCSR
in reply to Heatherlss

Can you share the pdf with us?

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Heatherlss
Heatherlss
in reply to LanaCSR

sure tell me how to do that !

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LanaCSR
LanaCSR
in reply to Heatherlss

I have no idea how. Maybe someone else in here knows?

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Tinabugsu

He probably should have told you what to do but pregabalin I believe is Lyrica which is a big sister to a gabapentin you can just switch write-up.

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Annieapple

Withdrawal is hell!! You are still going through it. DONT put yourself in a worse position by going back on DA drugs!! Go back to your specialist & ask for help but tell him you can never go back on DA because of augmentation. Can you buy over the counter codeine & take it 4 hourly at night in the meantime?

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Birmanblue

Gabapentin has side effects on muscles. May be you should check with specialist. You can look up side effects of your meds by typing their names in the search engine. Restless legs can be caused by low iron ferritin and vitamin D. I have a sleep disorder and take a sleeping pill If I don't have it I'm up all night. I go to bed late or I wake up at 2 am. My muscles get restless but this due to diabetes or gout if I eat too much red meat bacon ham and beef. Expect you have had blood tests as these may help in diagnosis.

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Heatherlss

Hi,

I had my blood tests done a couple of months ago. Will have them done once again on Monday.

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marsha2306

Not to discount what Birmanblue said but I’ve been taking Gabapentin for over 4 years now and it’s never caused any side effects on my muscles. Everyone reacts differently to medications.

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Heatherlss

Clearly. My RLS started at 12am today and it's 4:45am where I live. I'm still struggling with the rls. Managed some sleep on and off. Yet another terrible night. I just feel so done.

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Birmanblue

Possible association between vitamin D deficiency and restless legs syndrome ncbi.nim.nih.gov.

Is the title of an article concerning neuropsychiatric disease and treatment. It is conclusive that vitamin d is one of the possible causes of restless legs. Vitamin d is said to help dopaminergic dysfunction .Brain iron deficiency is also considered to be a cause of restless leg syndrome.

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LanaCSR
LanaCSR
in reply to Birmanblue

I tried to pull up the article about vit d and rls, but it said: Sorry, the page you were looking for does not exist or is not available.

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macewan13

M’y withdrawal from DAs took 4 months - hang on in there.

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Heatherlss

Did you return to your pre Pramipex treatment levels ?

How did you know that you were through with the withdrawal?

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macewan13

Hello again, Heather,

At about 4 months into the withdrawal, the daytime and really severe symptoms stopped, almost overnight. I got through this period by shoveling down Tramadol and Codeine. I had started on Pregablin as soon as I commenced the withdrawal. I stayed on this, supplemented by Tramadol for a couple of years. This mostly worked until I reached the maximum dose of 300 mg of Pregablin At this point, my doctor told me to come off ithe Pregablin slowly and to go back onto half a 2 mg Neupro patch and a 100mg slow release Tramadol. This usually works. If the RLS breaks through during the night, I take one paracetamol/ codeine tablet or 50mg Tramadol. It’s not perfect and, like everyone else, I would prefer to manage without medication. I am on the lookout for the first signs of augmentation.

I find it difficult to tell if I went back to pre treatment levels as my untreated RLS, which I have had all my life, had been getting worse over the years, anyway.

I hope this helps you on your own journey.

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Tinabugsu
Tinabugsu
in reply to macewan13

OMG how did you do that? 😬

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macewan13
macewan13
in reply to Tinabugsu

What?

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Tinabugsu
Tinabugsu
in reply to macewan13

4 months of withdrawal!

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macewan13
macewan13
in reply to Tinabugsu

With great difficulty

- thought it would never end but it did.

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Rlsmade

Strictly no caffeine.sugar free everything,jelly cubes raw help cramps.bannanas but try low acid fruits that can cause lactic acid build up. These are all things i have found to calm things but and a bit BUT things only i found have helped me at some time in my life..and not a doctors order or nor am i any sort of specialist..I'm just a 30 year veteran

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Heatherlss
Heatherlss
in reply to Rlsmade

Hi,

I've read from people's experiences that caffeine actually does help some. I don't drink coffee anyway so wouldn't know but desperate times call for desperate measures so I'll give this a go too. Don't have much to lose I suppose.

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Zedz

I was taking 900 gabapentin at night to get off pramipexole. That’s what finally helped. 10 days of hell but have been ok since. Gabapentin done to 600 at night and I’m hoping to go lower

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Heatherlss
Heatherlss
in reply to Zedz

You're very lucky and I'm glad that you're doing good. Its been 6 weeks for me and I still have intense RLS. I took gaba 300 but now on pregab 75mg hoping for it to work somehow. It's been a long struggle but I hope it will be worth the trouble in the end.

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restlessstoz

Hi Heather, I've read you posts and sincerely hope that things will improve. For what it's worth, for me salt is a trigger- sugar, potatoes!!! STRESS, no exercise. a minimum of exercise is helpful but beware of overdoing it; I'm on the FODMAP Diet and also avoid other triggers, alcohol and nightshades, amongst others. If it doesn't cure it, at least I feel as if I'm doing something proactive to help and not simply on a sea of opposing forces. Secondary suffering: i.e. how I feel about what my RL are doing is a major thing so to try to relax and distract from them and let them blend into the background. I don't' know how this works but I can get absorbed in a hobby at night and work well, ignoring or not feeling my legs for periods, then go back to bed till the next bout. I'm also learning mindfulness in an attempt to counter the secondary pain and it does help. See the link below:

booktopia.com.au/mindfulnes...

also

bookdepository.com/Mindfuln...

I completed the first book and CD over 12 -14 weeks and now am on week 3 of the second book. The relaxation I find is blissful, though I have to meditate standing up at times and it takes determination. IT's worth it. at least while I'm trying something new, I still have hope...

I went through horrendous withdrawal and not find I am disheartened by constant symptoms but the hope that something I read about that will help is just round the corner. I had an iron infusion about 9 weeks ago so still hope of an improvement from that. Meanwhile, keep the faith and check in with the forum when you need but above all, don't give up. Try everything, and try combinations of everything. Who knows what combination might work. And make a noise about your condition- I had a severe attack in the doctors surgery whilst augmenting and that make him sit up and take notice. Now he works with me to try to alleviate symptoms. He knows how delicate the balance is when sleep deprived and depressed.

If you run out of strength, borrow ours, and let the believe we have in a cure or something that will help, take over. We have to be there for each other and my goodness, we will support you in any way we can. Hang in there fellow sufferer. We're in this together and it will get better- even if it's a matter of you handling it better with more skills. Keep in touch and don't give up. Just because the medical profession is behing the times doesn't mean we should accept second/third/fourth best treatment and if we all SHOUT OUT about the treatments, someone has to listen.

Good luck Heather. We're on your side. :) (Sorry about the long post- written in one of my third disturbed sleep times tonight. :)

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Heatherlss

Thank you so much for your kind words. How I wish docs were as humble and considerate as people here are. My legs are not ready to shut down. I guess this is a never ending struggle. I can't believe my legs used to be fine just a few months back. How things can change. Another agonising night is about to end.

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Tennwalker1

Hi Heatherlss, been reading part of your situation and it's sounds a lot like mine. I've had RLS for almost 50 years now and it's been a roller coaster. I weaned off of mirapex / pramipexole this took me almost 5 months to do. I've been to the Mayo Clinic for help with this problem she set me up on a schedule to wean off of the mirapex and what to do once I got off of it. She gave me three options luckily I only had to use one. I've been on most of the Alpha 2 drugs and the didn't help. I finally found a combination that works for me. I had to go to the opioids. At 5 in the evening I take two 50mg of Tramadol, at 8 I take two more 50 mg, and at 9 I take horizant 600mg. I cannot tell you how good I sleep or how amazing it is. What a blessing to have found this combination. For now. I'm going to enjoy it till it doesn't last anymore and then I'll have to move on to something else. Horizant is relatively a new drug no generic, very expensive, I had a very nice doctor who gave me months of samples. And now next month I will have to start buying it. Horizant is specifically for restless legs. Like I said it's new so it's going to be costly. I'm in the US so I'm able to get it with insurance. Its a little bit cheaper than someone that doesn't have it.

Right now that what works for me. I hope this helps . The people that have been responding to you are so knowledgeable. They helped me. Good luck and God bless as you try to figure out what works best for. My heart aches for you. I've been there too.

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Heatherlss

The fact is that I hadn't yet augmented. Rather, I quit because I figured RLS would return to Pre-Pramipex levels. The way it is going, I think there is no Pre-Pramipex levels for me. My RLS used to be SO mild before beginning on Pramipex that I didn't even consider this a thing.

Things aren't looking brighter, but I hope they will be better in the near future. Don't know if the neuro would prescribe opiods. *sigh*

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Sara_2611

Hello I can only suggest you try to keep positive

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Heatherlss

Thank you Sara.

It's not been easy at all.

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Sara_2611

You're very welcome

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Sky7777

Hi, I am using cbd oil (not thc) which I rub on my knees (I have knee issues too) down, including the bottom of my feet.

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Heatherlss
Heatherlss
in reply to Sky7777

I can't get CBD from anywhere. It sucks that cannabis is considered dangerous when it provides so many benefits.

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Sky7777
Sky7777
in reply to Heatherlss

I must admit I’ve never used drugs so when CBD became legal here only last year (?) it really didn’t effect me in any way. February 2019 I was diagnosed w/ RLS. Because of it I was not able to sleep at all, and it started effecting my nervous system. I came across an article ( Cbd oil for pain management / Medical News Today ) and decided to try cbd oil tincture (250 mg). It didn’t help me sleep and 1 night because of the tremors I rubbed the oil on my arms & legs. This calmed my nerves AND I was no longer “kicking” at night. It’s been about 4 months that I’ve been doing this. Ofcourse I drink my required amount of water, try to hold off on anything sweet/ sugar, this includes carbs. I also take my zinc, iron and magnesium......

Maybe you can research “cbd oil in neigboring countries)?

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