Hospital withholds RLS medication for many hours .. sorry this is a long story X

[HilsK]

I have had to manage RPS since birth. Both my Mum and Dad had it but it was then called 'The Fidgets'. I got a double whammy of the genes and have it very severely. As a child who couldn't sit still, I was punished frequently, often by being hit and sent to my room. It wasn't until 1998 that RLS was diagnosed by a new clued up GP who prescribed Pramipexole originally 2x 0.88 micrograms in the evening.

Augmentation inevitably took place over the years, although it wasn't named or known about then. It was living hell and I was a full time Carer for my hubby who had Dementia.

In 2018 I was forced to pay an extortionate amount to see a consultant who actually had RLS himself and was the only person in the NWest who seemed to understand. He guided myself and my GP in a course of treatment which included trying to titrate the Pramipexole I was on ( 6 x 0.88 micrograms twice and day). Since that time, with a GP who was prepared to listen and learn, I have been able to manage pretty well my RLS.

Unfortunately, then Covid struck. I caught this in the hospital on 4 occasions on top of Asthma treatments. That's all fine IF you don't suffer from RLS. Leighton Hospital Crewe, in CHESHIRE.

They have a ridiculous and life threatening habit of searching my bags for my RLS medication and taking it off me. That would be vaguely OK, IF they gave me the medication on time or alternatively didn't lose it, or give it to a patient with Parkinson's who's on the same medication leaving me to wait for hours and hours until the Pharmacy provide some more. I'm authorised to carry my own medication but they will NOT listen to that, nor do they care.

In April this year, I had been in hospital, admitted with pneumonia, but caught Norovirus which was circulating two days later. Infection control was non-existent, with mask worn by many nurses around their necks .. until someone came along that is; nurses moving from patient to patient without washing hands, etc. As I recovered from that, they placed a woman with Covid in the next bed. Three days later I was again very ill.

Now for the hospital's final disgraceful trick .. I had been moved to a GP ward with COVID ready for discharge (!!) and suddenly they had to move me back into the main hospital. They were supposed to have 'sent' my medications with me but they went missing. I was without my RLS medication for 16 hours. I was in so much pain and with a temperature of 40+, with difficulty breathing and I get placed on a ward where the doctor only knows about or cares about Covid, though not the patients that have it.

I deteriorated incredibly until all my skeletal muscles were randomly contracting and I was shaking from head to foot and in so much distress from incredible pain. Full on RLS +++ This had happened before when they had withheld my RLS drugs and it is very frightening indeed. Each it time takes me days to recover from. I was called a 'Drama Queen' and an 'Attention Seeker' .. I am 77 years old.

I now know that what had happened. It called DAWES SYNDROME.

The hospital expected me, as soon as they DID provide my Meds, for me to feel OK, but the feelings and sensations from Dawes took maybe a week to stabilise and for me to reach some sort of equilibrium.

And the hospital .. well they've suddenly lost the notes that may or may not have been made. I met recently in a discussion with the hospital about all of this, with Matron's trotting out with their rosy coloured glasses, "Our Nurses and Doctors don't lie" ! So it didn't happen???? The implication is that I'M lying??

Fortunately, I recorded a continuous 6 hour audio on my phone during this time .. I thought at least my family would know what the hospital had done if the worst happened. I can recommend this action if you find your self on a sticky wicket! Then you have PROOF.

I suppose I want to know if anyone else has had medication withheld and developed Dawes please?

If so, how did you get round this ??

I want to know because it absolutely terrifies me. The worst is that 'the hospital' DOESN'T LISTEN and HAS NO CLUE WHAT I'M talking about and clearly doesn't care. xxx

[Strike26]

Hi - I’m going to stick to your central question of how you were treated. Without Gabapentin my life would be hell. Thanks to this site, the advice given, my RLS has reduced by 80% (my estimate).

In April I was admitted under “blue lights” to A&E resus with cellulitis- I nearly died. On moving to a ward, all my medication EP laced in a locked drawer and dished out to me as the consultant/doctor felt was appropriate- there was little understanding of RLS and how I take my meds for maximum effect - for example, using it early some mornings or later in the evenings when I can feel RLS coming on. Why does the NHS act like this? In part, in my view, because it is an institution still stuck in the past, where control of patients was the norm. I’ll make clear at this point that it is the system, not the staff, I am criticising.

After two days I asked to see the consultant and I told her I wanted my medication unlocked and with the Gabapentin, left with me to decide how I took it. Over the next couple of days a battle of wills took place but I did get my way, although my other meds for a heart condition stayed with them. Note: I was in a single room so there was no danger of anyone else having access to my meds.

And the other outcome- I am deemed (I have seen my clinical notes) a “difficult” patient. I am pursuing that wording via a complaint. All I wanted was to retain a bit of control over my life at a very difficult and scary time and to use my meds to their best effect. I know my body, I know what works and I would never step outside of the parameters of the medication. Our great NHS needs to be brought into the 21st century and recognise we are individuals and treat us as such.

[Munroist in reply to Strike26]

I have a relative with Parkinson’s and on a few recent trips to the hospital they were were not allowed to bring their own meds but were allowed to administer the equivalent ones the hospital provided which is fairly positive in the context of this post. In the past the hospital have given them them intermittently and at the wrong time which can really mess up things for Parkinson’s patients and almost negate their beneficial effects. Now we just patiently explain that the patient is the best judge of when they are required and if they don’t get them on time it makes everything worse including the other conditions they are in hospital for. Another solution in desperation is to leave a set with your visitors if you are lucky enough to have any so you can get regular deliveries when you want or need them.

[HilsK in reply to Munroist]

I have now spoken with the hospital CEO I’m not going to be treated like that . I hope that will make a difference but the Drs need re-educating about the whole thing . Dawes Syndrome is awful. . To think tree doctors swore the Hypocratic Oath to do no harm.

[Strike26 in reply to Munroist]

Hahaha- exactly what I did. Got my own set and that is what changed things, as I said I would be refusing their med regime and going with mine (some bluff involved as I only had a couple of days spare!!!).

[HilsK in reply to Strike26]

Remember too that your records are subject to the Data Protection act which states that no one can keep false information on you . I think this issue is horrendous and the BMA need to take action . There are an estimated 10% of the population with RLS and a fair number with Parkinson’s. Many medical centres and doctors treat us like children. They take an oath to do no harm .. and they have driven a bulldozer over that .

[SueJohnson]

That's absolutely horrible the way the hospital treated you, not only with regard to your medicine but subjecting you to covid!

I always advise that one speak to the patient representative and your doctors if you know you are going to be hospitalized but of course you didn't know in this case but you could still ask to talk to the patient representative. Another idea is to have your doctor write a note that you carry with you and can show to the hospital about your condition and that you need your medicine.

[SueJohnson]

You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a "Hospitalization Checklist for the Patient with RLS" . RLS-UK also has advice under Useful Resources on their site that you can print out.

[HilsK in reply to SueJohnson]

I am a member but didn’t realise they did cards . I need to get the hospital too to understand that their behaviour causes Dawes syndrome . This hospital has no neurology department so is it any wonder they behave in this uninformed dangerous way.

[TheDoDahMan in reply to HilsK]

Hi, HilsK,

It is obvious that you have been treated horribly. One small helpful hint: your spelling of Daws Syndrome has an "e" in it that should not be there. When I googled your spelling, it was auto-corrected to "Duane Syndrome", which is a problem with horizontal eye movement. DAWS = Dopamine Agonist Withdrawal Syndrome, which I'm sure is what you mean.

Wishing you the best!

[Joolsg]

Definitely file a written complaint to the hospital CEO and also to PALS, copy in your local MP.Hospitals are now very unsafe. There is zero Infection Control for Covid/Flu. No hepa filters anywhere. It is totally appalling.

RLS patients need to take their medications ON TIME or they will suffer terribly. As you discovered.

Ask your GP to write a letter that you can carry with you every time you are in hospital.

I do hope you manage to continue the Pramipexole withdrawal safely and move on to better meds.

[Jelbea]

I am so so sorry for what you have suffered. I have much empathy for you. I was admitted to hospital through A & E having had a violent reaction to an antibiotic. It was thought I had aseptic meningitis at first and then they decided I had had a heart attack - completely wrong diagnosis. On admission to cardiac ward all my meds were confiscated. I take a chemotherapy drug orally every day. This is a cytotoxic capsule which cannot be handled without rubber gloves. They actually lost my chemo drug and took ages getting replacement. I was given my buprenorphine at the wrong times or not at all for my RLS. The whole nine days was a fiasco and I dread hospital admission again. I am sure this will happen as I have a lot wrong with me and age 82.

I actually had kept some buprenorphine back which they did not know about so I was able to take it at the right time. I would suggest that you go down this track as well. Do not give in all your tablets. It is dreadful that we have to do this, but I feel we have no option. I was in a room by myself as I am immunocompromised and on one day I was given a cup of tea at 6.00 am and did not get any other drinks that day - even water - until a kindly orderly came on in the evening and made me a cup of tea. I was mostly ignored unless for BP checks or meds. I am supposed to drink a large amount of water because of the chemo so I had to get my family to bring in bottled water.

I send very warm wishes your way. Perhaps someone else will come on the site and make other suggestions.

[SueJohnson]

How much pramipexole are you taking now? Are you weaning off it?

[HilsK in reply to SueJohnson]

I’ve come down from the doss of 6 x 0.88 twice a day which is wag above max dose . To 2 x 0 88 twice a day alongside Carbomaz etc

[SueJohnson in reply to HilsK]

That's great! It will get harder the less you take. My usual advice and you may have seen it is: To come off pramipexole reduce by half of a .088 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

As you are aware ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

From your previous post you are already taking 300 mg gabapentin. Normally you would start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. 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 as the peak plasma level is 2 hours. 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 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. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

If gabapentin doesn't work or you have side effects you can't live with then ask for a low dose opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed on of the others be sure you are given enough to take them that often.

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[HilsK in reply to SueJohnson]

Thankyou Sue … yes i was on Gabapentin but the side effects of that on my gut were too much to continue. All of this as i said i’d running against Post Covid and Tracheomalacia .. damage from many Covid infections… I cannot get off Pramipexole Om on the minimum my body / brain will tolerate. Apparently if you have. been on very high doses of Pramipexole for a long time ( 1998 until 2018 ). 15% of patients need to continue with a minimal dose … there research on this with Parkinson’s patients ). My body’s reaction to coming off to less than 1 mg was to develop multiple symptoms .. similar to Dawes over my whole body. As a full time sole carer , that wasn’t a situation I could remotely cope with without full support. but no support was available to help my hubby with severe dementia, never mind me. it would have put my life at further risk.

Now my hubbys died, there are so many health problems i have to contend with and manage; it is too risky to my body to come off it. and as my RLS is Refractory.. there’s no alternatives.

Whatever the ‘ books’ say they are only considering ONE scenario … that you have RLS … not other conditions you’ve been propelled into by multiple covid infections. it’s the holistic effect of those that’s the problem.

Believe me i know about DA’s. I’ve had to battle with the mental side effects … the obsessive and destructive side ,, not having a clue that this was due to the key side effect of Pramilpexole.. it wasn’t initially, cited on those little leaflets that are your pack. It was only when Class Actions began to happen in the States that the manufacturers changed their packaging and understood what was happening.

but apart from all of that, i am so grateful to hear from so many other with their own issues. That for me is so important for each one of us. xx

[SueJohnson in reply to HilsK]

I am so sorry to hear about your husband. And yes with many other health conditions it can be hard to think about coming off pramipexole. However when you are ready or if you suffer from augmentation you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. This way your body will hardly notice the reduction and you can spread it out for as long as you like.

[Ticki]

My dear, that is the worst story I have ever read concerning this horrific condition. I command you for still standing and fighting because you have been put through the ringer and that’s the saddest thing of all because it’s so common, there are just not enough educated doctors or nurses or care person who really don’t know much about this almost un known disease. The suffering afterwards is definitely an issue and I personally have not gone through an experienced like yourself but I have heard others and it’s kinda like this condition because everybody’s timeframe is different. I’m not sure but I’ve heard it can be a month or so to quite a few months , which I hope is not your case.my prayers are with you because enough is enough and I hope and pray that your health stays strong and you don’t have to see that hospital again and feel better soon from the dawls.❤️‍🩹

[Typicallygaslit]

It’s depressing and terrifying to hear these stories. I’ve had very varying experiences with my sleeping pills. Last time I was admitted to the orthopedic hospital, the staff made a big effort to give me exactly what I needed at the right time. I’m taking Buprenorphine and thankfully there was no problem with it at all. I was impressed although there were still some minor issues. This hospital is clearly trying to offer patients a decent experience. General hospitals seem a lot worse. In one they almost killed me due to sloppy practices.

[Qalba]

Going into an ER or hospital causes a severe anxiety attack for me for this very reason. We need our stories told. Yours would be a good example.

[HilsK in reply to Qalba]

Yes it would because I will not be the only person this happens to.

But not sure how this experience could be used or rather where ?

[Qalba in reply to HilsK]

Many places. RLS foundation seeks out stories. A blog or social media where we pray it could go viral. A book or short story that is published. This book is an example!

Using Kratom for Chronic Pain and Restless Legs Syndrome by Mary Leohardt

[HilsK]

I will look to doing this .. My heaths not wonderful this week but when it improves that will happen.