Anyone awake?: I'm afraid I've had a... - Restless Legs Syn...

Restless Legs Syndrome

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Anyone awake?

IrishInLondon profile image
33 Replies

I'm afraid I've had a terrible night again. No sleep at all. And the burning in my thighs is back. I feel so anxious as well. I don't whether to go into work or call the doctor. I actually feel so anxious I feel like I want to throw up. Ive no idea what's happening to me right now. I'm sorry to burden you all with this but I've nowhere else to go. Ryan

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IrishInLondon profile image
IrishInLondon
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33 Replies
Kaarina profile image
KaarinaAdministrator

Hi Irish, I am sorry you have had a terrible night. You have a sick note. I would call the doctor. He will be able to help you. Tell your doctor what you are telling us. There is no need to apologise to us. If I was you that is what I would do.

Let us know how you go on today. First of all see your doctor.

Kaarina

Hi Ryan, i hope you have taken the advice of Kaarina, used your sick note and get to see your doctor. The anxiety needs to be addressed, you need to get that sorted out, as i have said before, its not helping. Only your doctor can help you right now. We are always here to give you our support. x

Hi Ryan, you are not a burden to us we all need a little support at sometime. Hope you are feeling a little better?...pippsx

Irish, in my experience, and just my experience, no one else's, I have found the best over the counter remedy for sleep and anxiety is something called Advil/Ibuprofen. The best prescription anti-anxiety med which also helps with sleep that I have tried is klonopin/clonazepam. The best over the counter treatment I have found for RLS is one tablet of iron bi-glysinate at night, on an empty stomach.

I have heard, but have no first hand experience, that the only antidepressant that is good for anxiety, and might be RLS friendly, is Effexor. I'm going to take a leap of faith and assume that whatever antidepressant you are on is not Effexor and is currently making your RLS worse, and therefore your anxiety, since you are not sleeping well because of it.

You may think we are helping you, but in all reality you are helping us. The results of any and all medications you try will add volumes to our understanding of RLS. Let me be the first to thank you for going out there on a limb for us all.

in reply to

The RLS friendly anti-d is called Trazadone. And that should work without making RLS worse, if you have RLS. Not my experience either as i have never needed so far to take a anti-d. But some members on here do take that without any problems.

nightdancer profile image
nightdancer in reply to

Sorry,tcho, Effexor is NOT the antidepressant that is safe. It is in the group of those are well known to make RLS worse in 99% of all RLSer's along with the tricyclics. See Drugs And Foods TO Avoid at rlshelp.org on the treatment page, and i am sure the RLS-UK has that list also.

in reply to

Can I do a take back? Not sure Wellbutrin is the best alternative for someone with clinical depression. It is NOT a reuptake inhibitor for serotonin (which is ok as far as RLS goes but maybe not so when it comes to depression) and only a weak inhibitor of norepinephrine and dopamine. You can almost never do enough research into a drug you are thinking about taking when you have RLS and depression. Plus it does not appear to be sedating and may do just the opposite and that is not necessarily a good thing when you have RLS? So I'm back with Effexor for those with RLS and clinical depression. Wellbutrin might still be the way to go for those with RLS and anxiety like Irish and who can't tolerate trazadone for some reason.

en.wikipedia.org/wiki/Bupro...

Everyone has to do the research and say a prayer before trying something new.

in reply to

Wellbutrin is not available in the UK only short term as a stop smoking treatment. Irish is in the UK so will not be able to use Wellbutrin.

You are right! Forgot about that one. It's supposed to be great for anxiety, which will be relieved with small doses of it. Larger doses, which are needed to be therapeutic for clinical depression, are supposedly rarely prescribed these days for one reason or another.

Irish, are you out there? See if your doc will prescribe a "non-therapeutic" dose of the antidepressant called trazadone. It won't do much for RLS but it will reduce your anxiety. This stuff gets rave reviews for anxiety and sleep. Works quicker than Effexor too, supposedly.

Then the real work begins. Finding something that will ease your RLS. I promise you it will be an adventure. You are not a victim of RLS and anxiety, you are a scientist on a mission.

Peace out V

in reply to

Would hardly call finding something to help with RLS an adventure. More like a pain in the backside. Trying different meds to see which one will work, which one you can tolerate. Its not an adventure. My opinion of course.

I wish I could tolerate the very large doses of Trazadone needed for treating clinical depression instead of being stuck on Paroxetine which makes RLS much worse,

If I took a therapeutic dose of Paxil I would have RLS from the tip of my head to my toes. I'm ultra sensitive at this point in my life to all RLS unfriendly drugs. RLS is the greatest darkness. I will put up with every other malady before that one. Like I said a million times before, one (or two if you're taking an SSRI) tablets of iron bi-glysinate will stop the RLS even if you are taking RLS provoking drugs. Albeit temporarily. But the best choice is to switch to an RLS friendly anti-depressant such as Effexor for clinical depression. Then when you're feeling good challenge yourself, knowing that you can go back on a full daily dose at will. Life is strange and always changing. You could be taking a drug for something that is over or that would be over if your RLS abated.

in reply to

Effexor is NOT one of the RLS friendly anti-depressants. You keep posting that it is. !

in reply to

That's odd, I thought that's what tired parent uses as well.? Maybe I can find her post

in reply to

I'm in the UK and on Venlafafaxine which was on the RLS Help drug list and I don't think it has made my RLS worse

Above is a quote from tiredparent. She mentioned it in another post I believe. I also believe it works in a similar fashion to Wellbutrin which is also generally well tolerated by RLSers.

Get your facts straight or don't respond to my posts if you don't like them or me.

in reply to

Now you can see exactly what it says in rlshelp drug list as regards antidepressants maybe an apology to Elisse would be appropriate as she did get her facts straight.

in reply to

Switch out anti-depressants for whichever one makes sense to you and your doctor, feel better and I'll apologize. I know beyond a reasonable doubt that the Paxil is making your RLS worse. Like I said to Irish, whenever you go out on a limb and try a new med, it helps us all. Whole new chapters will open up by your experience alone. Everything that everyone writes on here is pretty much gospel. So if someone on here says that they've tried everything out there and that for the first time they got relief by taking one teaspoon of cream of tartar at night that's as good as gold to me and worth a night of research to understand why it might be helping. I can't tolerate people who summarily dismiss something, including Effexor, because one unscientific source says it's not RLS friendly. Show me the study where the lab rat's CNS levels of dopamine dropped after injection with Effexor and I'll apologize as well.

in reply to

I have already stated that Paroxetine makes my legs worse

nightdancer profile image
nightdancer in reply to

That is rude, tcho, ( formerly known as terraverde ) and also, iron, no matter what you favorite form is, will not usually counteract the affects of an SSRI or a Tricyclic OR Effexor. Effexor is on the list of "no no" drugs for RLS, as Elisse posted.They make RLS symptoms go into another realm for 99% of all who try them that have RLS. I can cite this anti-d stuff in my sleep, and Effexor is not an "RLS

help" drug. so it IS on the "naughty list" of drugs for RLSer's.

in reply to nightdancer

I'm not the one to talk to about iron, Avosyl really is the one. I've never taken anything but iron for RLS so I have no basis of comparison. Below is her statement:

"Right i am in a bit of a quandary. Recently my GP put me on Ferrous Fumerate 210mg three times a day. My level was down at 15 at the time. It got to 50 and GP said to stop taking them as hemoglobin was great and didnt need to be any higher. Now one of the greatest things about it was while i was taking them i had only a vague sensation of RLS kick in once or twice. However coming off the iron tablets it all kicked in again mainly in wet weather. I should explain i am on Pramapexole for the RLS. The only thing with that is i have gained two stone and the sleepyness i suffered from just before coming off Ropinirol has gotten worse. I fall asleep everywhere and any time e.g tonging my hair. Now i saw the neurologist on Tuesday and i told him about the iron tablets and barely got it out of my mouth that while on iron i had no symptoms of RLS before he decided i should go back on them and when they kick in i have to start coming off the Pramipexol. I honestly am not sure if this guy is as knowledgeable about RLS as i thought at first. My GP is on holiday at the moment so am carrying on as norm and just taking one iron tablet a day out of the ones i had left. What i need to know is does anyone know if its possible to get rid of my RLS symptoms by just taking iron and what happens if i take too much as i understand it can be dangerous. I really dont know what to do next. Anyone any ideas please as to moving forward with this. I have had RLS since i was a child and find it hard to believe that iron alone could be the answer."

I for one believe her. And as far as I'm concerned she was taking the wrong kind of iron and too much of it and she allowed her iron stores to get too high. Yet it still worked for her. I assume she hasn't been on here because she is symptom free and making up for lost time by traveling around the world? The right kind of iron (biglysinate), taken on an empty stomach, at the right time (during an attack or before bed) will help as many people as your morphine pump will. If you will admit that a morphine pump does not counter the effects of the antidepressants you take then I will admit that iron will not counter the effects of same. Sorry Nightdancer, but iron does and will taken in the right form at the right time. You wouldn't take a morphine tablet in the morning to help with your night time RLS? Same is true with iron. :) I've noticed people on here who are taking iron are taking the wrong kind at the wrong time.

Do you really think that iron is something that is only going to bring Avosyl and myself complete relief (albeit temporarily). Pretty much the day you stop the iron is the day your RLS returns and the same is true for morphine. The problem with the way you took iron is you had an enormous amount infused over a short period. Hopefully it gave you relief from the RLS that day? But then it gets stored, pretty quickly, and our brains can only pick it up from our bloodstream and use it to stop the RLS at that moment in time. So we have to get the iron into our bloodstream, not our colons, at the right time.

So with Avosyl, her RLS was bothersome during the day, and she took the iron during the day and of course it helped her, until she stopped taking the iron. Eventually the iron would have stopped working for her anyways because once her stores got too high her body would stop any absorption of iron from the small intestine into the bloodstream. Sweet dreams :)

nightdancer profile image
nightdancer in reply to

That is all very well, but you are generalizing again. Iron does NOT work for everyone. I take morphine ER every 12 hrs, slow release for pain issues, not ONLY for RLS, and that has been for 12 years. I only started my anti-d's, and the one I am taking is NOT in the SSRI or the tricyclic class, 6 yrs ago. So, it has never bothered me. it is not the same for ALL, no matter if you are talking iron, or anti-d's or morphine. It affects EVERYONE differently. I hope ALL people taking iron have consulted with their doctors, had the tests done to make sure you do not get iron overload, if you do not need it. My antidepressant, for ME, does NOT bother my RLS. That is the last time I will say this to you, terraverde/tcho. I am done with this , because all I do is repeat myself with you. have good day!

in reply to nightdancer

The one you take is probably the worst of all of them.

This is from the website rls.help.org It give the list of the anti-depressants. And which ones are RLS friendly, which gives just two. If someone can use a anti-depressant that is not RLS friendly they are lucky and i am pleased that they can.

Antidepressant Medication

This class of medications should be used with caution in RLS patients. Antidepressants can worsen RLS symptoms more often than help them. As depression is a common problem, especially in patients with severe and persistent RLS problems, antidepressants are often prescribed for RLS patients. RLS patients who are put on antidepressants and notice worsening of their symptoms should inform their physician of this problem immediately.

There are several different classes of antidepressant medication. If a medication in one class causes problems, then a medication from another class may be of more benefit. As with most RLS medications, much trial and error must take place to see if these medications are helping. Due to the long list of antidepressant medications, we will only list them in their appropriate categories.

There are no specific guidelines for using antidepressants in RLS, and generally they are used for RLS in the same doses as for depression. The oldest antidepressants, the tricyclics, tend to worsen RLS more than they help. The SSRI's will worsen RLS more often than helping but they seem better tolerated than the tricyclics. There is only one antidepressant drug, Wellbutrin, which has dopamine like effects, so it may benefit RLS. This however, has not been looked at systematically yet although there are some case reports of Wellbutrin helping RLS. Trazadone may not help RLS but it does not seem to worsen the condition.

Tricyclics & Combinations

Ascendin (Amoxepine)

Elavil (Amitriptyline)

Etrafon (Perphenazine and Amitriptyline)

Limbitrol (Chlordiazepoxide and Amitriptyline)

Norpramin (Desipramine)

Pamelor (Nortriptyline)

Sinequan (Doxepin)

Surmontil (Trimipramine)

Tofranil (Imipramine)

Triavil (Perphenazine and Amitriptyline)

Vivactil (Protriptyline)

MAO (Monoamine Oxidase) Inhibitors

Nardil (Pheneizine)

Parnate (Tranylcypromine)

Selective Serotonin Reuptake Inhibitors (SSRI's)

Paxil (Paroxetine)

Prozac (Fluoxetine)

Zoloft (Sertraline)

Celexa (Citalopram)

Lexapro (Escitalopram)

Serotonin and Norepinephrine Reuptake Inhibitors (SNRI's)

Effexor (Venlafaxine)

Cymbalta (Duloxetine)

Tetracyclics

Ludiomil (Maprotiline)

Miscellaneous Antidepressant Medications

Desyrel (Trazadone)

Wellbutrin/Zyban (Bupropion)

nightdancer profile image
nightdancer in reply to

rlshelp.org (no period between "rls and help" ;)

in reply to nightdancer

Ooops yes, i just noticed my mistake for the website. :)

nightdancer profile image
nightdancer

Ryan, I know what you mean, and how you feel. I will wait to see if you have seen your doctor, before I post any more, but I am a veteran of panic attacks. Hope you are doing better today. One day at a time.......

Well Irish, if I were a betting type woman, my money would be on Wellbutrin if you need an antidepressant. You get three inhibitors for the price of one:

Wellbutrin = inhibits the reuptake of serotonin, norepinephrine AND dopamine

Effexor = inhibits the reuptake of serotonin and norepinephrine

Prozac, Paxil is just serotonin.

If you need an antidepressant for anxiety then Trazadone it seems is a good choice, maybe.

Always do your own homework. And your own meditation. A daily anti-depressant should be for daily anxiety - I think. For episodic anxiety then maybe an anti-anxiety med??? Or what I like to call an emergency med. That gives you an opportunity to gauge what's happening with you. Hope sleep is happening with you!

Same reason you criticized Effexor. We're helping. :)

in reply to

I gave out info that was fact on the Effexor, it is one that can make RLS worse and not a RLS friendly one. And it you read that info, it says everyone is different and some might have to try several anti-d's to find one that will not make their RLS worse.

nightdancer profile image
nightdancer in reply to

I went thru the list of anti-d's over the years. I had my share of tricyclics and SSRI's and SNRI's. Mirtazapine is the only one that did NOT BOTHER my RLS, and I am also free of the panic attacks that would not let me leave my house. So, who are YOU, tcho, to criticize the medication I have been taking for years and now I can live my life almost "normally" now? I will say that there was one study done only on Remeron/Mirtazapine done for 12 wks on less than about 70 people, if that many. 28% reported worsened RLS, so that means that 72% did NOT report any worsened RLS. That is the only study that has been done to date. It is in a class of it's own. SOME very few people can take SSRI's, very few, without worsening symptoms. But, my own personal medications works for ME, because it does, and I always stipulate the usual disclaimer-"what works for one, does not necessarily work for the next person" and so on. You have a good night, hope all of us do.

in reply to

Tcho thats not very nice

Daragh profile image
Daragh

Folks,

It's disappointing that we have to ask you, again, to treat each other with respect. Nobody on this forum has all of the answers or all of the correct answers. Please take a deep breath and remember there is a real person at the other end of the line. Some of the juvenile language used above is particularly disappointing and not befitting of a help resource. If you wish to squabble please go to another website. If you appoint to give advice please try and ensure it is accurate. However by the very nature of RLS treatments what works for one person may not for another.

So please deep breaths all round!

Ryan I get burning in my calf mussials too and sickness So I take sickness pills called Prochlorrperazine they none drouzy I also get numbness in my feet arms and face So I know how you feel

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