How did your rls start, how do you deal with sleep lots
Hi, my restless legs started during the second covid lockdown. In 4 nights I went from having no issue to not sleeping at all. I have hydrocephalus, and it is one of several conditions I have developed as a result of that (rls is very common in people of have had neurosurgery, and hydrocephalus).
By the 4th night I only slept for 10-15 minutes, and that was in two short blocks after walks around my estate.
It took about 6 months for me to reach 2mg of ropinirole, but since then it's mostly worked. I sleep rather less than i used to. Also, i often wake, and then it takes hours to go back to sleep. If been on the medication for about 2 years, when it started making me vomit each night. This is perhaps the medication I have had to worry about most, I'm on my this kind of anti nausia, and I'm just hoping this one works for one (otherwise I'm fearful I'll run out of new options at some point).
As with others, I worry about augmentation, but without the ropinirole, I don't really sleep at all, so I'll have to worry about that when it becomes an issue.
I am struggling to cope with it, particularly, always being tired (can't catch up, as i can't take more medication in the afternoon). The idea of having it this bad for the rest of my life is rather depressing. During a period of being awake last night, I did one of the questionnaires which quantities it (i forget it's name) - apparently im in the very severe category, but given it is an issue every night, and often during the day, that shouldn't be a surprise. Still it's encouraging, that i do have it quite bad, I'm not just being pathetic.
It is hard with family having no idea what it is like.
I'd love to hear some coping mechanisms, see if there is anything that has not occurred (I think I do everything obvious). Also just heading from other people will be encouraging to not feel completely alone. I have hope that better treatments, perhaps like neuralink might come along, what do other think
Lori, thanks for your response - unfortunately many of the standard 'helps' don't due to the cause (hydrocephalus). I've talked to my consultant, and it is one of a number of conditions that you can get with hydrocephalus (i think third or fourth).
Unfortunately, it also was caused by brain disruption (neurosurgery and pressure on the brain) rather than diet. I've had iron levels tested, and have asked about other means - ruled out by the cause. Exercise is similar, the ropinirole has caused weight gain, but not too much- but in terms of relief, the effect lasts 15 minutes max, so i used it during the first week, before I had meds, but haven't since. I am lucky, in that I don't like coffee, and drink very little compared to average (except during holidays, 1-2 units is rarely exceeded).
Company and support is great, and somewhere to check doctors advice (he is very good, with little in depth knowledge, but helpful in directing or sending on). It seems I need to come off the ropinirole, which i will discuss with him in a week or so, but i am dreading that, it took months to reach the level I take, and barely sleeping for months is not a nice thought - I'd it possible to start on something else before stopping the ropinirole?
Thanks so much
My heart goes out to you,
. It sounds like you rarely get a break from your RLS. If you comb through the forum posts, comments and stories here in this community, you will see that people have found relief in the oddest ways. Many people have good luck with dietary changes, like intermittent fasting, eliminating certain food groups, avoiding caffeine, getting more electrolytes, or using supplements. Others have found that pressure at pain points, regular exercise or certain lotions and creams have helped. Every journey is different perhaps because the cause of RLS can be different from person to person. Many people find solutions by accident. I hope you find something you haven't tried yet that helps. Please know we are here for you. You are definitely not alone. Warm wishes. - Lori (Team Member)
