Worse Symptoms and advice sought !!

Post by **Polar Bear** » Wed May 14, 2008 3:46 pm

Hi everyone

I think I know the reason why... but here is the story.....

My symptoms have been pretty much 'upped' recently. Arms misbehaving a little more than usual, and all symptoms a little harder to shift, which gave me a really bad time sleeping about 10 days ago. It was so... bad... I was operating on around 3 hours per night ..... and then came the night when there was no sleep at all. (hadn't been so many of those for a while - meds helped)

At 6am I had walked, tossed, turned, walked and was in tears. I shook hubby awake cos I could stick it no longer... so he said... that's it 'No work, definitely not today'.

Now, I have always gone to work, sleep or no sleep, and it was very difficult to stay off with a sickie, even tho I knew I just wasn't fit for anything. First sickie in 9 years .... this shows just how bad I felt, even tho I had taken extra meds and extra sleeping pill. Symptoms just kept going.

Of course the response from work, well that was something else. Text from my line manager... 'I'll meet you anytime/anywhere if there is anything you need to talk about' - they are all fully aware of my condition, hubby had told them it was lack of sleep. But cos I always keep going, they couldn't believe it and thought I had thrown up the head cos of work load/pressure of work etc. I had to phone in to reassure them, and they were certainly supportive (yeah... as long as I was only off a day or so!!)

I was off last Thursday and Friday, which led onto the weekend, which also helped. However I was so exhausted I couldn't even begin to think of posting on the site, it is only now that I am up to talking about it. I can't believe how the sleep deprivation affected me. I reckoned I had been there before, but this was something else.

I know tht the question of augmentation etc. is to be considered, but I had rls 24/7 well before I even took any meds.

NOW I come to the next bit..... I kind of digressed there.

I find that I now suffer from nausea/indigestion, have done for about 6 weeks, hardly ever before. I have been on codeine and sleeping meds for about 3 months (help a lot), along with requip 2mg (about 20 months) spread over the 24 hours

To help the nausea I have been buying OTC Zantac (rinitidine) and this helps. However I wonder do I recall someone previously mentioning that anti-nausea meds are not good for us with rls. Could this Zantac being the cause of my increase in symptoms as I have been taking them two per day for several weeks.

Did someone previously mention an anti nausea med that does not affect rls. Any help GREATLY appreciated.

Thank you so much, I just know my friends here can help me.

:wink:

Post by **ViewsAskew** » Wed May 14, 2008 4:54 pm

First, I am so sorry you had to go through that. Just my opinion, but it's almost worse when it happens after a respite. You start to believe that life can be truly wonderful....then, BAM! It's as bad or worse than it ever was and all within a day. No time to work up to it being like that.

Crud - I just looked at the clock and I have to log into an online training session in 5 minutes, so I have to go. Will say more later...

waterloo2 · Post by **waterloo2** » Wed May 14, 2008 5:09 pm

Hi Betty

Hope you are feeling better by now have you seen your
doc at all I saw mine again today.

Hang in there girl.

love gill :roll:

Post by **ViewsAskew** » Wed May 14, 2008 6:19 pm

Betty, a visit to the doc is a good thing. You've mentioned that you may know more then he, however, so being armed with as much info as you can is always a good idea.

How about a letter to Dr B? He might have good input for the doctor.

I also thought about augmentation (which you already thought about). Just because you had 24/7 doesn't mean you can't augment. To augment means to occur either more frequently or more severely. Yours is definitely more severely. You're also at about the "right" time for that. The average time is somewhere between 1 and 2 years. Some faster, some slower, some never.

It's also possible that the Zantac is interfering with the absorption of the meds, so they are not working - I don't know this, just that some drugs do causes this. There is a drug interaction calculator in the pharma sticky, I think. If not there, in the New to RLS sticky.

Per the nausea, Dr B's site lists the anti nausea drugs you can use. My brain is so muddled today that I just can't remember. It may even be listed in the pharma sticky here (I think it is).

Hope you find relief soon.

Post by **Polar Bear** » Wed May 14, 2008 6:28 pm

Thanks, Gill and Ann

Gill, I hope you got something positive out of your visit with your doc.

Ann, Hmmm.. I hadn't thought of mailing Dr B, tho I have done so before and found him very helpful. I will do that and will also check the drug interaction. Can't do it just now, but will do so and will let you know his response.

Thanks.

waterloo2 · Post by **waterloo2** » Wed May 14, 2008 7:00 pm

Hi Betty

I did thanks. A new pain killer and reviewed my ad's.
Lets see how it goes. If not I shall go back and back
and so on............lol
How are you feeling now?

love gill

Post by **Polar Bear** » Wed May 14, 2008 8:33 pm

Thanks Gill,
at present my right leg is like a lump of concrete, slightly burning and feeling as tho it would like to burst into full rls symptoms. It has been like that for about 4 days, (except when I do have full symptoms) and the meds aren't quite doing the job. Tho I have never did have 100% relief, but part of that may be that I am reluctant to increase my dosage for fear of augmentation etc.

I have written the epistle of all time to Dr B. and will let you know the content of his reply.

Thanks folks.

SquirmingSusan · Post by **SquirmingSusan** » Thu May 15, 2008 12:14 am

Hi Betty. So sorry you're feeling so badly. Hopefully this is just a bump in the road and things will settle back down soon.

There are a couple of antinauseants that aren't supposed to aggravate RLS. One of them is called Zofran here in the States and I can't think of the name of the other one. There is one called Domperidone that we can't get here but is available in Canada and Mexico. I don't know if you can get that one. Zantac isn't an antinausea drug, it's a proton pump inhibitor that's used to treat heartburn. It's also an antihistamine so it's possible that it's bothering you.

Wow, 9 years of work without a sick day!!! That's just amazing. I hope your employer appreciates the heck out of you.

It sounds like a trip to the doctor is in order, and a possible change of treatment plans. You need some sleep.

Post by **Polar Bear** » Thu May 15, 2008 12:06 pm

Hi folks,

I got a reply from Dr B, who suggested I try Kytril or Zofra instead of Zantac. I had emailed him last night, and there was a reply this morning.

So I phoned my GP doc this morning and requested a call-back, he phoned back in 2 hours and we talked - he said these two meds are for chemo treatment patients and VERY expensive. He queried did I need anti nausea or antacid? he is as always cooperative and asked me to email him the web page details for the So. Cal. rlshelp Treatment Page which gives the meds known to worsen rls, so that he can peruse it and revert to me.

A good service also I reckon from my GP. Let's hope he comes up with a good substitute.

waterloo2 · Post by **waterloo2** » Thu May 15, 2008 3:33 pm

Hi Betty

Have you considered a x ray just an idea?
I had a bad night rls wise.

love gill

Post by **Polar Bear** » Thu May 15, 2008 3:40 pm

We must all have covered many many miles during the nights.

waterloo2 · Post by **waterloo2** » Thu May 15, 2008 7:18 pm

Hi Betty

How are ya doing girl.
My right leg feels heavy too tonight don't no why?
Think its cause I had a bad night last night and
they have been off again just now its like you
have been exercises.

love gill

stitch · Post by **stitch** » Sun May 18, 2008 3:43 am

Hi Betty,

I don't think we have met because I have been away from the boards for awhile. But I have had RLS all my life so I know what those sleepless nights are like.

I was taking requip for awhile and it seemed to work fine but then I needed more and more until it put me into augmentation so bad. That was back in March of 2007 and I was also in so much pain with my back so not sleeping because of my legs but also in severe pain.

Then I was put on mirapex 0.5mg's 3 x's a day and I have not had any problems. Even after my back surgery on June 1,2007. So I am a happy camper now. I have one rule and that is anything that is OTC will cause RLS. It just seems that way for me and most things that are not OTC can be just as bad. That is why I like the southern CA site for what is good and not good for us kind of people. We are so special, Jeannie :wink:

Post by **Polar Bear** » Sun May 18, 2008 8:04 am

Thank you Jeannie, I have stopped taking the OTC Zantac, Doc hasn't yet got back to me with his recommendation for an alternative, I assume he hasn't had time to look at the web page I sent him. !!

In the meantime, I was aware that I had been for the last few months eating a lot more fruit, in particular oranges, so I cut that out, and don't feel just as nauseated/acidic, coincidence or not, I don't know. Also... coincidence or now, I think my rls is not just as severe. Is it because I haven't had any Zantac for 5 days, I don't know. :roll:

Thank you for saying hi, and good luck with your continued symtom free legs.

stitch · Post by **stitch** » Sun May 18, 2008 4:36 pm

Betty, I hope what you are doing now works for you. I would think oranges would play a part in making you feel bad. Dr's always seem to take their time getting back to you when you are have problems. But at least they know about RLS now, back when I was young they just laughed at me. And so I walked the floors at night thinking I was the only one with this problem. Take care, Jeannie