PULLING MY HAIR OUT!

[Legs1970]

30 years, give me a break, I’ve had enough, I’m fed up! Not enough is being done to help those suffering with RLS. With the millions suffering around the world how many more years are we going to be little guinea pigs? I’ve all but given up hope to ever finding an end to the everyday battles and the debilitating effects that this syndrome has on my life that the only time I’ll ever get peace is when I’m resting in peace (ie: dead)

[Joolsg]

👏👏👏I feel the same. Just bought a book by a leading UK RLS expert on sleep disorders & he treated an 82 year old who had been over prescribed Ropinirole and Levodopa. He made her go through withdrawal ( hell on earth as we know) & then a year later put her back on a low dose of Ropinirole. Aagh! What hope is there for us when ‘experts’ in the UK do this. The poor woman will augment again quite soon & will have to go through hellish withdrawal again.

It really is time for drastic change everywhere! More funding, more research & more treatment options.

The fact we’ve just had a post with someone asking for suicide help in a considered and rational way says everything about how appallingly we are all treated and how disgraceful the treatment of this common disease is worldwide.

I feel a Revotion is needed!!!

[Jules1953]

49 years I have suffered with this dreaded RLS.

Doctors, well many of them, have no idea what they are doing to those of us who suffer with RLS.

I have just spent 18 months reducing my Sifrol dosage.

From 3.00mg Pramipexole down to 0.125mg

Infact I am now cutting my 0.125mg tablet into three parts. Using a pill cutter.

I was taking 24 times the recommended dosage of Pramipexole every night.

Fortunately, I was made aware, by a pharmacist, that I had been wrongly prescribed this high dosage of Pramipexole.

This happened over 18months ago when I had gone to hospital to have knee replacement surgery.

And the pharmacist responsible for my pain relief management asked me why I was taking 3.00mg of Pramipexole.

So over an 18 months period, I gradually reduced my intake.

Towards the end of this time I suffered terrible augmentation and was unable to sleep, my whole body was jerking. I was mentally and physically exhausted.

I used Endone to assist me to reduce down from 0.75mg to 0.125mg Pramipexole.

Endone is oxycodone, I was taking 5mg.

Then I heard about Temgesic sublingual tablets 200mcg.

This is micro doses of Buprenorphine.

I am now using Temgesic and still taking one third of 0.125mg Pramipexole.

I am sleeping through the night

Julie McGowan from Western Australia

[Legs1970 in reply to Jules1953]

Thank you very much for taking the time to share your story and experiences with RLS with me I appreciate it.

I’ve been taking Pramipexole for many years now and like yourself found myself taking far more than the recommended doses only because the medication wouldn’t work when I’d take it so I would take more Pramipexole thinking it would stop my symptoms (eventually) when in actual fact it was causing my symptoms to get much worse.

I seriously can not deal with this anymore. I don’t want to deal with this anymore. I’ve lost a huge amount of faith, trust and respect for the medical world and in the professional field of the doctors and specialists and with my doctors. I’m just banging my head against a brick wall now. If I can’t get the help I so desperately need for this daily nightmare then what hope is there for me?? I feel that of lately every time I visit my doctor in a state/mess and distressed to once again try and express my concerns, anxieties and anguishes that their not interested and it’s obvious by the body language they display. Most times leaving worse off than when I went in. It’s the most disheartening empty feeling that I’m getting nowhere and that no one cares.

[Jules1953 in reply to Legs1970]

If you send me your email address I will forward some information from a lady from Australia who travelled to America to visit RLS specialists. This was just before Covid19 set in. It's through her story of meeting with these specialists and learning about Temgesic sublingual 200mcg that I have been able to get my life back.

I had to go with information in hand, to see my doctor here in Western Australia. Don't rely on the medication profession, they seem to know so little about RLS.

This site and community of knowledgable people have saved my life.

Look up profile on here, name of Shumbah, it is this lady who travelled from Australia to America seeking answers.

Kind regards Jules1953

[Jules1953 in reply to Legs1970]

Also look up postings from puzzler1 as well as postings from Shumbah.

puzzler1 has been able to access Temgesic sublingual 200mcg tablets in the UK.

[Shumbah in reply to Legs1970]

Hi Legs,

I am hearing you.

I used to visit my GP 3 times a week I was a deaths door.

September/ October 2019

I told my husband I had won an really expensive trip husband when we got to Tasmania I told him the truth.

I told him a had booked the trip as a thank you for our years together and that I could not and did not want to go on with this disgusting vile torturous disease. And that when we got home I was going to say goodbye to my 5 children. During that trip I tried Ketamin illegal of course whilst that gave me relief for the first few days then it augmented very quickly I stopped it on day 9.

Upon our return home I was hospitalised I was in a really bad way .

I was treated very badly I had been in hospital for a week they wanted to put me on amitriptyline this caused a big fight between my husband and myself in front of the doctor at 9.30 at night. I was furious I knew how bad amitriptyline would be for RLS my husband was saying you are not a doctor you are refusing help bla bla

bla. I checked myself out.

I live in the 24th floor apartment very dangerous for someone who never sleeps .

During my stay in hospital I had recieved a response from an email I had sent to Glen Brooks MD in

New York he owns a Ketamin clinic he is qualified in euthanasia and still spends 2 days a week in theatre and runs his clinics the other 5 days .

The response was short.

He told me he could help me and that he only prescribes buprenorphine for RLS.

48 hours later I was in NYC .

October 29 Th we meet Dr Glen an elderly man. Within minutes he reached across the table wrapped his 2 hands around mine looked me in the eyes and said let’s make you well.

He held my gaze and my hands for an extended time.

HE SAVED MY LIFE on the 29th of October2019.

My first minuscule dose( prescribed dose was 2mg buprenorphine ) I did not move all night , nor did I snore my husband kept checking to see if I was breathing I was so peaceful and I am still peaceful almost 12 months on.

I would love to know what country you live in , I have been working very hard to help people access buprenorphine.

If you are in the UK you need to ask for Temgesic it from your GP .

I would suggest that the post I am responding to you print and give your GP .

I wrote my horror story out and give it to all Professors and doctors I have meet.

I was going to my GP 3 times a week prior because I was going to Jill myself so when I came back from the US with this miracle he was thrilled.

There were obstacles I have crossed.

I have no break through.

I have letters I can email you if you send me your email address

[e-mail].

Check out my bio

and let me know your country of origin.

In my thoughts Shumbah

[Hidden in reply to Legs1970]

Hello and I'm so sorry to hear of the poor life you've had because of ow your RLS has been mismanagrd by professionals who are sposed to be those you can put your trust in.

I'm glad you've received such good advice from the others and hope this gives you a way forward to a better quality of life.

I'd just thought it would be useful to add, if you're still taking pramipexole then a major part of your solution is to wean off this drug.

[Joolsg in reply to Jules1953]

Thanks for sharing Julie. It gives people hope! Delighted you’re sleeping. Hopefully more of us will be able to persuade our doctors to prescribe Buprenorphine or Temgesic- I know Dr Buchfuhrer and the Mayo Clinic will be releasing more research on these drugs soon.

[Shumbah]

Ps we have just had our first 2 RLS sufferers prescribed Temgesic in the UK with great results

Also another sufferer who is the first in the UK (to our knowledge ) who has been prescribed medical Marijuana which is working well for her they said if it is not working in 3 months they will prescribe her buprenorphine.

[Sampsie in reply to Shumbah]

Shumbah, am I right in thinking you took Oxycodone first? If so, did you have problems with your bladder or it keeping you awake? I ask because I have these issues on it, and I wonder if that would be the same on any opiate. Thanks.

Also, which medical marijuana is it? I've started prescription CBD but so far it hasn't helped my RLS, To start it helped me fall asleep, overriding the wakeful effects of the Oxycodone, but that seems to have stopped. Do you know if this person has CDB or CBD and THC and what dose etc. ? Thank you.

It's so great that the Temgesic has worked out so well for you.

[Shumbah in reply to Sampsie]

I was on 20 mg oxycodene slow release

I only got 4 hours a night sleep whilst it was at is peaks in my system.

I had no bladder issues how ever I had very very debilitating memory loss. I could no longer have a conversation with my family as I could not remember what was being said.

Buprenorphine which different in that it is in milligrams not micrograms like Temgesic .

It totally different that any other opioid as if hangs into a lot less receptors

Dr Sarah Benjamin Recomended edible THC Cookies as marijuana in the form works better and lasts longer.

You turn the Mario in to butter then bake cookies . Someone did it for me .

Everyone is different as per amount.

You take it slow start probably about 4gours before bed. Because I would wait to hours before eating more as apparently edibles can sneak up on you.

There are a few different stains Recomended for RLS.

If you google it you will see the main one is indica .

I hope that helps

You start slow don

[Sampsie in reply to Shumbah]

Thanks Shumbah.

[Shumbah in reply to Sampsie]

Where are you located ?

[Sampsie in reply to Shumbah]

In the UK.

[Shumbah in reply to Sampsie]

Your GP can prescribe Temgesic which is truly having terrific results

[Legs1970 in reply to Shumbah]

I’m going to see my doctor tonight to put to him a prescription for Temgesic tablets. I sure hope he will be willing to let me try them. I can’t imagine what I’ll be like if he denies me!!! I’ll report back here after my appointment with an outcome..

[Shumbah in reply to Legs1970]

Make sure you take as much info as you can from other people’s stories.

Good luck

[puzzler1 in reply to Legs1970]

Hi Legs,

Sorry, what country do you live in? If your doctor won't prescribe the temgesic, then I really suggest you write to them stating all your suffering and the recent evidence for temgesic (buprenorphine). If you're in the UK you'll know that after a visit to the doctor they write your notes up on their screen. But it's their words not yours. If you send an email then it's your words that are are on file and I think that's a much more powerful persuader and I think the doctors take more notice. My doctor thanked us for all the background and evidence we supplied. I think it gives them more backup to justify their actions if they get questioned by their peers. There's a real stigma against prescribing opioids.

In a few months The Mayo clinic in USA are publishing their latest findings about treating RLS and their first drug of choice will be Buprenorphine.

So if at first you don't succeed - keep trying. It's worth a go.

[Legs1970 in reply to puzzler1]

Hi Puzzler

I live in Australia. I’m spending my day today putting together my RLS portfolio in readiness to see my doctor tonight for an extended appointment time. The preparation involved today is like getting ready for a big job interview and I will be taking some of you from Health Unlocked as my references. But tonight it’s going to be ‘my final stage performance’ to finally impress the judges (doctor)

It’s going to be hard to stand up on stage and try to shine while I’m in my darkest days. I’m feeling optimistic today but knowing I have you guys from health unlocked as my supports I’m also feeling confident.

[involuntarydancer in reply to Sampsie]

Hi Sampsie,

Just to confirm, the difficulties you are experiencing with oxycodone keeping you awake are well documented in rls patients. Nocturnal opioid alerting seems to be specific to rls sufferers.

I found it almost impossible to sleep when my rls was treated with oxycontin (slow release oxycodone). While lying awake in an opioid fug was infinitely better than being jerked awake over and over again by rls, it meant that normal life was virtually impossible as I was constantly exhausted. I tried taking marijuana. It does help me sleep but it was not sufficiently powerful to overcome the alerting of the oxycontin. Also, there was the dissatisfaction of using yet another drug purely to deal with the side effects of an existing drug.

I now take kratom which is more effective against my rls at a lower dose and has fewer side effects for me than oxycontin. Unfortunately, it is not legal which is a major difficulty.

[Sampsie in reply to involuntarydancer]

Thanks Involuntarydancer. I feel a bit stuck to be honest. As you say, the downside of the drug is better than the RLS, but it leaves you with poor life quality. I found Pregabablin as the best in terms of effect on quality of life, except it caused my hair to come out. And I am anxious about taking an illegal drug purely because you have no certainty about what is in it. Rock and a hard place!!

I'm glad you have found some equilibrium with it all.

[puzzler1]

Hi Legs,

I'm really sorry to hear you're having such a foul time. I've had RLS for about 25 years. For me it seemed to start around my menopause. When I first went to the doctor they knew nothing about RLS. After a number of years and a change of doctor, they prescribed Pramipexole. At first it was fantastic, worked a treat. But you know the outcome. It ends up getting worse and worse and then my doctor didn't have a clue what to do. And then they pretend it's not happening. It's not life threatening (not in its self!), they don't understand augmentation, so they just let you get on with it. For years and years and years. Hardly any sleep, constant pain ( I call it pain despite it being a sensation! It's agony - so it's pain) and unable to sit or rest and zero quality of life.

The reason I'm telling you this is because, for me, there was light at end of the tunnel. I was eventually referred to a consultant who dealt with 'Older Persons Health' in the UK. I am an older person! I had already started to reduce my Prami and the doctor was going down the gabapetin route. During a particular hellish period, my husband saw Shumbah's posts about Temgesic 200mcg sublingual tablets. It's a very low dose of Buprenorphine. It's an opiate so it's a controlled drug here in UK. My husband wrote a long email to the consultant/doctor about my constant suffering and mental state and asking for the Temgesic on the basis that I was withdrawing from Prami ( which should never have prescribed for long use), the gabapentin wouldn't become effective until I was off the Prami and that the sleeping tablets were dangerous for causing falling over when the RLS broke through in the night.

Well, after a very short time my consultant/doctor agreed to the temgesic based on the evidence in the email.

I've only been taking it a week but I'm now RLS free through the nights and I think it's improving the day time RL. And I've got much less in my arms. The doctor prescribed one or two tablets in the evening but I'm actually only taking a half tablet before bed. It's not perfect but the immediate difference is a miracle.

Jules1953 has recently been prescribed it in Western Aussie so I would definitely have ago at getting it for yourself.

Have a look at my posts (Puzzler1) mostly written by my husband which we sent to the doctor. There's growing awareness of Temgesic and for an opiate it's considered to be the safest and most effective for RLS.

Most doctors have got their head in the sand over this and the only way to make them more aware is to tell them (in writing/emails) how bloody awful it is and so they can't keep ignoring it.

Please don't give up, there may be some relief for you.

Hang in there.

[Sampsie]

Hi Legs, don't give up. I hope the experiences of Shumbah and Puzzler will give you the strength you need to find something that works for you. After 30 years you certainly deserve that. You really do. All the best.

[Legs1970 in reply to Sampsie]

I’ve been hoping for 30 years, It’s like I’m ‘flogging a dead horse’ while ‘banging my head against a brick wall’ then ‘falling on deaf ears’. I’m tired and I don’t mean sleepy tired and I’m drained...

Defeated 😪

[Sampsie in reply to Legs1970]

Don't give up Legs. Can you try the other suggestions on this thread? I really do hope so.

[Shumbah]

Hi legs

I am wondering what side effect you have to opioids .

The reason I ask is 1mg / 2mg max buprenorphine whilst being an opioid is totally different to others .

It hangs onto very few receptors in the brain.and it has a ceiling effect.

As you can see buprenorphine is micro dosed. Very very tiny amount compared to other opioids .

You would know in seconds as it is sublingual delivery so under your tongue .

If your reaction is not severe it might be worth trialing buprenorphine 1mg first which is half a tiny little tablet you pop under your tongue.

The results are outstanding.

Just thoughts for you to explore .

[Hidden]

You are not alone. Many, if not all, of us feel or have felt as you have described above. I have to remember that we are good people with a real, debilitating and horrid disease and we deserve the best medical and compassionate care out there.

That said, I try to keep a positive attitude with my RLS . I do the best that I can with the disease which means that do not use sugar, or caffeine, study reputable sources for information on RLS, am scrupulous with my medication use, and avoiding other known triggers like riding in the car in the evening.

I have sought out and demanded the best medical care and medical practitioners; not enduring the unknowing and/or uncaring medical people out there. I ,too, have been, depressed, suicidal, and despondent with my RLS in the past and have sought the necessary psychological care to keep going.

Sometimes, I dread the evenings and the upcoming nightly torments of this very real disease with the funny name. I have struggled with this for 45 years (I am 67 now). I also try to remember the axiom, "What can't be cured, must be endured."

For what it is worth . . .

Jerold in Citrus Park, Florida USA