Diary of a week with RLS - what I am taking to show my GP next week

[SteveT]

Diary snapshot of a week in my life living with RLS - apologies for miss spellings!

Weekend of 26th/27th January – Saturday suffered really badly with Labrynthitus and couldn’t do much. Very tired all day but each time tried to doze RLS kicked in and stopped me sleeping. Bad night on Saturday night but did get about 4 hrs sleep. Got up about 7 am on Sunday because of twitching. (both days took normal meds ie 3 pramipexole at about 7pm)

L/itus still bad, tried to do some decorating but had to give in. Still unable to catnap cause of RLS. Sunday night got about 5 hrs broken sleep.

Work on Monday but went to doctors mid morning about L/itus and saw locum. Discussed medication for RLS ie pramipexole and dose rates. He then did test and confirmed L/itus. Gave me medication for nausea. Took meds on Monday and for the first time in months felt on top of the world that evening! Took 3 tabs at 7.30pm.

Twitching not apparent until bed time on Monday but far more severe than normal. On a scale of 1 to 10, I am about 6 normally but I would say about 8 on Monday night. Gave up trying to sleep and carried on decorating for rest of night until went to work at 6.30am!

My wife researched meds given for L/itus and they are Dopamine antagonists and react with pramipexole which is a Dopamine agonist. They make the RLS much much worse apparently and I proved this was so without knowing why until the following morning!

Worked Tuesday although extremely tired. Managed to go out in the evening for 3 hrs to see friends and went to bed at 11 pm. As usual took 3 tabs at about 7.30pm.

Didn’t get to sleep until 4am because of fairly violent twitching and that was on the sofa downstairs. Went to work about 9am ish.

Wednesday 30th Jan – worked in office but very tired. Lunchtime went home to try to sleep but RLS wouldn’t allow it so went back to work. Finished work at 6pm and tried to sleep early evening but no joy. Took 2 tabs 4pm and another 2 at 7pm to see if that would help but no . Went to bed at 10.30pm and set the alarm for 4.30am to travel to Dartford for 8am. I immediately set in with twitching then body convulsions and got up again at 11.15pm. Watched telly till 12 and tried again but at 1am gave up and got up. At 1.15am decided to get dressed and leave to drive to Dartford, stopping when I felt tired. This I did 3 times on the journey but RLS would not let me cat nap in the car so arrived in Dartford about 7.15am having not slept at all that night.

Managed to carry out visits in Dartford, Romford and Hendon during Thursday and start to drive home in the afternoon. Had to stop in services before I killed myself and others and did actually sleep for about 45 mins, got home at 6.30pm.

Finally on Thursday night I slept! 11.30 pm until about 8.30 am only waking a couple of times. It was an amazing feeling, something 'normal' people take for granted!Friday daytime in the office was ok, finished work though at 7.30pm.

Bedtime at 10.30pm but bad bad twitching immediately set in and here I am at 3.30am writing this and my legs are still going mad and my whole body feels like it is possessed. No sleep again tonight I am guessing. Not sure I can take a lot more of this.

[Hidden]

Oh my, what a nightmare for you...but after what i replied to you in your other post, i am glad

you stopped for breaks on the road... It sounds as if since taking the anti nausea pills, its all gone nuts for you....

I have not noticed any spelling mistakes, but even if you have made any, i for one will not be worrying about it. You are in need to write down how you are feeling, thats whats important....

As i said in my other reply to you, i wish i knew what to suggest for you...

All i can do is give my support to you on here. I dont really know the answer. Maybe someone else will...

[SteveT]

hey as you say sometimes its just good to write it down. it feels then, in the middle of the night, that you are not alone. I really do appreciate your comments and the knowledge about different meds you have is very helpful. Obviously I stopped the nausea meds and hopefully things will settle down but got the doc next Wednesday so see what he says.

[Hidden]

I hope it all settles down for you too.... and you are very welcome, its what a support group is all about...

I guessed you had stopped the anti-nausea pills as you now know they made the RLS worse. We all learn along the way, what can make RLS worse, Sometimes, its a hard lesson. The more we learn the more we hopefully can cope better with this horrible nightmare condition...

Keep us informed on how you are doing...

[peterk]

Hello Steve T. It's very good that you maintained a diary and the information about what difficulties you are going through with RLS and the ear to share with the GP so they can see it staring them in the face. Driving must have been very hard and it must have been very tough taking meds for the ear and then making the RLS worse. By doing a diary like you have takes a lot of effort when feeling crap but you will see the triggers eventually for your RLS by doing so. Hope things improve for you. Brave of you to tackle decorating with your ear problem as it must have played havoc with your balance.

[SteveT in reply to peterk]

By the time I started painting at about 3am, the balance problem I had had from before Christmas on and off had miraculously gone. The doctor did a test on me by sitting me on the couch with my legs straight out and then pushed me very quickly backwards flat down. My world turned upside down and I was nearly sick but maybe that reset my inner ear and got rid of it for me, who knows. Don't normally diarise but thought I would do this particular week seeing as it was the locum that caused it by giving me conflicting meds. My wife is also going to video me when I am having my worst convulsions so that heT can actually see how bad it can be,I am sure sometimes they just think its just an odd flex of the legs rather than the full blow spasms and convulsions it can get to. I just wish they could feel what its like, the spasms, the nausea and the feeling that you are all screwed up and just want it to end. Thanks for your help and comments everybody

[thedragon]

That is a brilliant idea doing a diary over a period of time for your doctor...when I go to see him I've usually walked there so am feeling ok so the desperate feelings I have in the night don't come across

[nightdancer]

That is why I advise everyone to keep a pain diary, a food diary and a sleep diary. When your brain is fuzzy, you foget what you want to say. And, never apologize for misspellngs. Good job, Steve. this is a good example of how to help ourselves.

[nightdancer]

one thing I am picking up strongly as I read thru your schedule? You have no good sleep schedule at all having to get up at 4:30, typically when RLS starts to calm down during the circdian rhythm.

[SteveT]

Hi Nightdancer, enlighten me, what is circdian rhythm?? I can only agree on my sleep schedule, I run a construction company and we work all over England so sometimes have to be a long way a way by 8am and i hate hotels so my morning can be anytime from 4am onwards even when I am in the office i can be in as early as 6am sometimes and my day never finishes before 7pm and sometimes later so no. not the best routine i must admit. I am in the office now at 8pm but just about to finish but I have to be in again at 6am to prepare for a meeting I have run out of time tonight todo!! I must be mad.

Went to the docs today, he liked the diary and he is passing it on to a specialist he is going to refer me to. He actually asked me to see if any body knows a really good RLS specialist that he could contact to discuss my case and possibly refer me to so any suggestions of who to contact would be gratefully received. Anywhere in the country as obviously I travel a lot!!!

Calm nights and still legs to all!! Steve T