SSRI's

Perhaps most of you already know this, but I thought I'd pass it along. My sister just took herself off Zoloft, an SSRI, and her restless legs is now gone.

[Hidden]

Wow! That's great!

Oh...and welcome.

[Wonko_TheSane]

Edit: never mind! I read that she took Zoloft - you wrote that she took herself OFF Zoloft! So that's in line with expectations! Disregard the below :).

Actually, that comes as quite the surprise to me. Anything I've ever read about ssris and RLS was that they make RLS symptoms a lot worse and should be avoided if at all possible!

[Parminter]

Yup.

The only anti-depressant we can take is Wellbutrin, otherwise no-go.

But if your sister has familial RLS, and is still quite young, it may return, because it is a slowly progressing condition.

So she should be watchful.

[Hidden in reply to Parminter]

Nah. We're OLD!! Hopefully she's done with it!

[NathanWi in reply to Parminter]

Wellbutrin caused insane RLS for me. I couldn't last more than 5 days.

[Parminter in reply to NathanWi]

Gosh, that's really interesting.

I have never heard a boffin say that, quite the contrary.

I think you should put it out to one of the best, perhaps Doctor Brian Koo of Yale, that your experience was awful.

Bang goes another bit of hope for hard times. We do get kicked around horribly.

[NathanWi in reply to Parminter]

We do indeed

I have read several times before, and it makes sense to me, that RLS can be caused by too much, or too little dopamine. As Wellbrutin increases dopamine it makes sense that it could cause RLS, as symptoms of too much dopamine can include restlessness and aggravation in some - or interestingly, the opposite in others.

The same can be said of herbal remedies like St Johns Wart. It also increases dopamine, and also worsens my RLS symptoms.

[Parminter in reply to NathanWi]

Yes, St John's Wort would wreak a little havoc. That is bad enough, but it is so sad about the alcohol and coffee. Weep.

But, insofar as the science is settled, (can science be settled, not really), we have too much dopamine, so much that the receptors are blown to smithereens. We have too much 'pre-synaptic dopamine', but then we are at a loss as to what to do with it all.

So, rather foolishly, we add more in the form of dopamine agonists, and the receptors become even more smithereeny (that is a settled scientific term).

Oh dearie me. Do forgive my misplaced levity, but it is three in the morning and I have slept, perhaps, two winks. One and a half winks. And I am going a little bit daft.

Nice talking to you, NathanWi.

[involuntarydancer in reply to Parminter]

Hi Parminter,

I'm sorry to see you aren't sleeping. I hope things pick up for you. Regarding coffee, I actually find it helpful. I read a post a while back from someone who found that drinking a cup of coffee helped to reduce symptoms. I started doing this occasionally and it does seem to afford me some relief. I believe that coffee operates on the adenosine system (similar to persantin) and I speculate that that is why it works.

Also re alcohol, I know that lots of people find it to be an instant trigger and that is definitely true of wine for me but I can drink quite large quantities of spirits and not have worsened symptoms. I don't generally drink (I take enough mind altering substances thanks to my rls) but sometimes I feel so fed up that I embrace a whiskey and ginger ale and it makes me feel a bit more human.

[Parminter in reply to involuntarydancer]

Hello Dancer. I have just had a very good night's sleep, following the ingestion of a cookie, a little DA and about 80mg of dipyridamole.

One never quite knows what works, and what does not, or winkle out the reason that one night can be so different from another. Why do we not have a simple problem?

The coffee suggestion is interesting. As is being fed up to the back teeth and swigging some of the hard stuff. (I now get instant headaches from wine, which is sad in a wine-growing country).

Cheers, and thank you for your concern.

[Parminter]

Wow! Perhaps we should all take it, then stop!

This sort of resolution is exceptionally rare.

How long had she had RLS?

[Hidden in reply to Parminter]

Well, years I think but not sure. Remains to be seen if it is indeed a permanent fix, because she wasn't on that med for all those years.

[Parminter in reply to Hidden]

That is so very interesting.

One would certainly expect her RLS to improve after quitting SSRIs, but resolve?

So rare if it has. She should tell an expert like Doctor Buchfuhrer, he might be interested.

[ELLSBELLS in reply to Parminter]

I was prescribed lithium and took lowest starting dose for six weeks. By the sixth week had the worst RLS I had ever suffered starting in the evening and raging until 8 am or thereabouts. Stopped lithium and RID disisappeared. I take trazodone as a very effective antidepressant after going advice from this forum.

[Parminter in reply to ELLSBELLS]

Gosh, this gets more and more interesting. THings that are not written anywhere that I have ever read are coming out of the woodwork.

I hope more of this sort of information comes out - it could stop a lot of unnecessary suffering.

[Sleekcat]

Hi That is good news for your sister! Do you mind answering this please? Is your sister in need of an anti depressant all the time & if so is the on a different SSRI? If she is I hope the RLS is not re-appearing? If she is on another anti d hope that doesn't cause the RLS to re-appear? Do you mind telling me what the new anti d is called please; I need one that doesn't cause RLS? Best regards Sleek Cat

[Hidden in reply to Sleekcat]

Sleekcat, she's now not on any antidepressant. She was in a bad spot for a lot of years, but all that's resolved now, and I'm guessing that's a lot of it, but I haven't discussed it with her to be sure. Something you might be interested in- I had read somewhere not long ago that the actual data on the effectiveness of any antidepressant is rather deceptive- according to that guy, and I'll try to see if I can find it again, just simple exercise is just as effective if not more so. But then I come from a very anti- drug company point of view! I don't trust those greedy b**!@$$$**rd's any further than I can throw them!!

[Hidden]

Thanks to all who responded; I will keep you posted on how she does now that my sister is off the SSRI. Sleekcat reminded me of something I'd read recently, but not finding it in my books right off, so I did a quick internet search with "exercise more effective than antidepressants" and found a pile of returns including this one- jonbarron.org/article/exerc...

I'm not one to wade through studies, relative vs absolute risks, figuring out if they have cherry picked data, where the unpublished data is that didn't come out the way they want, etc, etc, etc. Personally I like anecdotal evidence- try it and see what happens! And that's pretty much how this RLS forum works. Here's one more website I found- patientslikeme.com. At this site, patients sign on, list their conditions and everything they've tried, then all that info is pooled to see what works for how many. Neat idea!! Sure beats relying on studies and trials you can't trust anyway. It takes some time to get all your data into their system, but it may be worth the effort for some of you.

[Eleven10]

My RLS started when I stopped a SSRI. I had never experienced it in my life until I stopped Prozac. I believe it messed up the sertongenic and dopamine system in my brain. I don’t just get it at night but I’m unable to keep my legs still in the day too. It’s much worse in my right leg than left and I get it in my arm and thigh. It’s torture

[Hidden in reply to Eleven10]

That just underlines the fact that everyone is different and what works for one may well not work for another. Hope your body balances back out SOON.