hi everyone

[Fingerandus]

i am an 80 year old female living in Australia i migrated here at the age of 27 with two young children i have been married to my husband for 62 years have just two children a son and a daughter 5 grand children and 8 great grand children all living within a few kms of us.. i have had breast cancer, ....von willibrands,thyroidectomy i am having tests for celiac disease but my biggest struggle at the moment is RLS and i am suffering augamentation from pramipexole [sifrol ] 0.25 mg a night which i have cut into 4 and take 3/4 per nite now .. i am mostly happy but have many sleepless nites i seem to survive on catching just three hours in early mornings. some times its very draining with no energy.... i spend time on my computer researching my family tree i did find out that my gran was married to a Wright from Utah but she was home sick and left him and returned to England .. i knit dolls clothes for my dolls and grand daughters but children do not seem to care for dollies and tea parties these days and i read a lot i do my house work washing and ironing myself hubby does windows gardens and paths weeding ....good night fellow sufferers good luck to you all

[Madlegs1]

You have an interesting story to tell.

Reducing your dose of Pramipexol very slowly and by small amounts is good.

You can cut the tablets- ,as you are.

You should be asking your Dr for some sort of opioid to take over. At our age (I'm 76) we don't have to worry about the concerns some people seem to have about these.

Good luck.

[Fingerandus in reply to Madlegs1]

thank you madlegs thank you

[Biscuitface in reply to Fingerandus]

I'm 75. I Augmented on Pramiprexole 2 years ago. I now take Buprenorphine which enables me to currently get 7 hours sleep at night.

[Fingerandus in reply to Biscuitface]

hi i would love a good sleep i can if i take co codamol but the doc wont prescribe them all the time only every couple of months then vallium no chance they say its very addictive ????? i say back im 80 does it matter i can occasionally get termazipan but they make for restless legs as do paracetamol kind of pain killers i am not allowed ibuprofen kind of pills xxx

[TheDoDahMan in reply to Fingerandus]

Sheer idiocy that you are made to suffer, at 80, for fear of "addiction."

[Fingerandus in reply to Madlegs1]

hi there well i went to the docs today my results came back from the celiac test it came back positive for the gene which doesnt meant to say i have celiac disease so further tests are now needed i asked her for help to get off pramipexole so she gave me a script for a lower dose told me to cut it in 1/2 then in 1/4 then to take pregabalin for the restless legs 75mg NO she said i cant give you an opioid you just take pregabalin so here i am preparing for some sleepless nights and its very cold and im very tired i am going to try a lyrica and go to bed shortly but i will probably see youz all later xxx

[pennygates]

I have just read your story. You have endured a lot. Its good to see that you are mostly happy, but I can also see that it's a struggle with your RLS. Madlegs is right, you could do with an opioid to help you. But it sounds like your GP isn't very helpful. Does she know how hard it is for you? Sleepless nights are so hard to cope with. I do hope you can get some help with this. It's a pity you can't see a different GP.

[pennygates]

I have found this forum so helpful. Many insights gained. As Joolsg has said ' we need to become 'patient experts'. And try to nudge our doctors to look at newer treatments that are available. It was suggested to me by SalemLake to try iron bisphosphonate each evening taken with Vitamin C. I tried it, using Sue's advice on how to take it. No tea or coffee before or after, as this stops absorption of the iron. I take Gentle Iron to protect the stomach. Amazingly it has helped my RL symptoms a great deal. Not completely removed it, but I can rest for a few hours. It hasn't helped my insomnia but it has enabled me to rest at least.. it doesn't help everyone, but it has been a blessing for me. Its now 3.30am in the UK and the birds are singing, so I will try to rest now.

[Marlayna]

welcome!

[grassgree]

Gabapentin or pregabalin are the first line treatments for RLS now. Have you tried either one of those? What about having your ferritin level checked?

The positive effects of valium don't last long, as the body becomes quickly tolerant. And hey, you've got years to go and more great grandchildren to see!

[Fingerandus in reply to grassgree]

hi grasstree yes i have had pregabalin i weaned myself off them a few months ago i took them for periphial neuropathy in my toes .. im not sure what causes my RLs but they start around 5.30./ 6 pm when i sit down to relax i fall asleep because my nights are terrible and thats when it starts thats it for the night whole body kicks in then i take 3/4 of my premipexole dose and walk around until i get some relief ....but augamentation is something to put up with until slowly slowly i can withdraw from sifrol xi will do it this time ive tried many times without success xx

[Jelbea]

Hi again, You and I have spoken here just hours ago as you had answered my post. I hope you don't mind me saying on here that you are on blood pressure treatment which includes the diuretic - hydrochlorothiazide. This would probably add to your horrible RLS and keep you restless.

Sue J might come on and be able to tell you about this as she is very good on all drugs which contribute to our nightly horrors.

Best Wishes

[pennygates in reply to Jelbea]

Hi Jelbea, You are absolutely right about Bendroflumethiazide, and I'm not able to continue with it. My GP knows how I suffer with RLS, yet she continues to prescribe things which make it worse. I have to go through the rigmarole each time I get a new med. Trying it, telling her its no good etc. I think she doesn't understand how severe RL can be. She's very kind, but not up to date, hey, how many are in the UK?Sue has provided me with a list of more suitable meds. Other kind members have also replied with their suggestions. So I'm going back to GP armed with this list .

I think our doctors should be made to watch videos of our 'nightly horrors ' until they understand the effect this illness can have upon our lives. Some of the bizarre things we do to alleviate symptoms. (I sometimes put my head into a pillow and scream). It doesn't help my RL, but it gets rid of some frustration and despair.

Thank you for your help, much appreciated.

[Jelbea in reply to pennygates]

Hi Pennygates. Thank you for your reply. I agree with all you say. I was put on BP medication last Friday and after my first dose that evening I felt dreadful the following morning. When I took my BP it had dropped so much that the diastolic was below 60. Did not take any more but spoke to GP (a different one) on Monday morning. She rubbished what I told her and said that could not happen as it would take 2 or 3 weeks for a drop in BP. That was tantamount to saying I was a liar as I had told her I had recorded my BP which stayed low all day. I do wish GPs would really really listen to patients - they might even learn something!!!!!! She then told me to start taking it again - that she was not going to "chop and change".

Anyhow my post had really been for Fingerandus as she had been in touch with me and I had noted that she did not mention being on a diuretic in her general post here. I wondered if Sue J might have come on with some advice for her but Sue has obviously not seen this.

I am glad that you contacted me but maybe you wondered at some of the things I said as I had mentioned a different diuretic, etc. Anyhow great hearing from you and I hope you get sorted ASAP.

[pennygates in reply to Jelbea]

Yes I was a bit confused, but I did realise what was happening. However it's good to talk as they say. Your experience with blood pressure meds is similar to mine. How dare a GP tell you that you are wrong about your symptoms!! The arrogance is outstanding. It sounds all so familiar. Go back after a while and say it again.

Sue has some better suggestions for these . I hope I can get my GP to give them a try. And I hope you can too. Good luck

[SueJohnson in reply to Jelbea]

There are no diuretics that won't make RLS worse.

[SueJohnson in reply to Jelbea]

There are no diuretics that won't make RLS worse.

[SueJohnson]

Jelbea wanted me to advise you on diuretics, but unfortunately there are no diuretics that won't make RLS worse.