Lifelong "thing" getting weird

[gottamove]

Hello!

To begin, my name is Lise and I'm a uni student studying psychology and art. I'm very active, health-conscious, and a decent chef I also have a wonderful boyfriend who I'm currently house-hunting with!

I've never formally discussed this with anyone before, but I've had what my family has called "restless legs" for as long as I can remember. Both my dad and aunt (his sister) have had it their entire lives, too, and the best I've been able to describe it is just a weird, tingly, pully-feeling mostly in my calves, but also extending to my feet and thighs at times. They feel sort of fizzy and tickle as soon as I try to keep my legs and feet still. The feeling varies in intensity, but it's constant. I'm 27 years old, so it's been about 20+ years of this 24/7.

Because I've grown up with this, I've learned to manage the feeling quite well by simply keeping my legs, feet, and toes in constant motion. For most of my life, it's never been a major issue, but just an inconvenient quirk--until recently. I've had sleeping problems for as long as I can remember, too, mostly related to insomnia and nightmares, and I've never slept a night without tossing, turning, kicking and hitting walls; all of that is my "normal".

I have taken venlafaxine ER for generalized anxiety for nearly two years, which was increased from 150 to 225mg about three months ago due to a family crisis that my therapist thought would be particularly difficult to handle. My sleep problems became worse, but I was given eszopiclone to help. It certainly made it easier to fall asleep, but I still woke up in the middle of the night or incredibly early in the morning while tossing and turning without being able to go back to sleep. Naturally, I attributed this to the stress and anxious thoughts I had racing through my mind. However, the family crisis in question mostly passed about a month ago and my anxious thoughts have become manageable.

What I don't understand now, though, is why I'm still having an incredibly hard time falling and staying asleep. I try to avoid sleeping pills and instead smoke cannabis before bed which helps me fall asleep, but I still either wake up in the middle of the night or ridiculously early, unable to fall back asleep. I've always had low energy and am constantly fatigued, with my brain feeling cloudy all the time. Sometimes, I'll experience weird phenomena such as sleep paralysis, which I've taken to mean that I'm frequently sleep-deprived.

I had heard of RLS before, but never really looked into it until now--and I'm 100% certain that I qualify for a diagnosis.
My sleep seems to slowly getting worse, and the feelings in my legs are getting to be more noticeable and annoying--I even find the feeling creeping in my arms and hands, sometimes, too! So, while trying to learn more about RLS, I discovered that it's well-known from research and first-hand accounts that venlafaxine often makes symptoms worse.

Even though it works well for treating anxiety and depression, I would still like to stop this medication and perhaps switch to a different one. It's disappointing, though, because it's worked so well in the past. Would lowering the dose lessen the severity of RLS symptoms? Is it worth it to bring this up to my GP or therapist? I feel like it's a bit silly to talk about, as I've never heard of anyone (except some online) having it on such a disturbing level, and I'm not sure I'll be taken seriously about it.

Sorry for such a long introduction, but I really appreciate you taking the time just to read this.
Any input would be lovely

[ViewsAskew]

I only have a moment - so most importantly, welcome!

Second most important - get your serum ferritin tested, as well as your hemoglobin.

And, yes, your medication can make it worse. Tapering it may or may not help. Switching also may or may not help - our chemistry is different and what works for one will not always work for another. Another thought...long ago a study found that people with RLS/WED are several times more likely to have anxiety and depression. But, what we aren't sure of is which comes first. It very well could be that the anxiety and depression are side effects of the RLS itself and that when controlled, those things are relieved, too.

Poke around - lots to read here.

[Polar Bear]

Gottamove -
This book is wonderful, it is easy to read .
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

ViewsAskew has already suggested that you get your serum ferritin tested. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100. Especially if ever taking a DA medication for treatment of RLS such as ropinerole or mirapex. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

[Rustsmith]

Your venlafaxine is an anti-depressant that falls into the class of drugs known as SSRI's. SSRI's are notorious for causing problems with people with RLS because the way that they adjust the chemistry of the brain helps depression but aggravates the systems that cause RLS. The book that Polar Bear cites recommends that your doctor either tries to treat you with either bupropion (brand names Wellbutrin and Zyban) or else try a different SSRI.

The book also recommends that getting off of SSRIs should be a secondary issue for RLS patients because treating the depression is more important. And, as Views said, we are all different. So a medication change that works for one person may be ineffective for another.

As for sleep, that is a major problem for many of us and getting your RLS under control should be your primary goal. If you can do that, then sleep meds like Lunesta will become less important. My personal experience in this area is that when my RLS was completely controlled, I could sleep normally. But when I am having problems with my meds, Lunesta works sometimes and none of the other sleep meds does anything other than what you have experienced (and I have tried almost all of them). The one exception for me is that gabapentin helps me fall asleep. I still wake up in the wee hours of the morning, but at least I do not toss and turn when I am trying to fall asleep.

But overall, these are things that you need to work out with your doctor. He/she is the one that needs to work with you on the depression issue. All the others are things that you can suggest. Finding a doctor who will work with you on treating the depression as well as the RLS is an issue for many of us. All that we can do is try to find a doctor either who is well versed in RLS or is willing to work with you and learn (which is where Polar Bear's book becomes critical).

[jul2873]

I've read that Wellbutrin is a good anti-depressant that does not cause an RLS flare-up. Perhaps you could ask your doctor about this one.

[Polar Bear]

Just to note that Wellbrutin is not available in the UK as an antidepressant, it is however available under the name of Zyban as an aid to smoking cessation.