amino acids...

[badnights]

I notice Beth?? periodically posts the Augmentation link.... not sure who Beth is or what that's about

Hi, I'm Beth. My username on this board is badnights. All of my posts begin with "by badnights" and end with three signature lines as follows:
"Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601"
Most of us moderators have decided to make useful links be part of our signatures. That way, people can easily find the basic information, stuff that is most often needed. Ann (username Viewsaskew) links to a topic called "A good place to start: managing your RLS". Betty (polar bear) links to the WED Foundations Medical Bulletin. I link to information about augmentation.

One of the saddest things about WED/RLS is the number of people augmenting on DAs. These people are suffering to a degree that is impossible to describe, and the horror of it is that it is all so unnecessary. If all physicians who prescribe DAs for WED/RLS were aware of the basic aspects of augmentation, almost none of that suffering would happen. Since so many physicians are in the dark, people who have been afflicted with augmentation need to learn about it, so that they can shine a light for their physicians to learn about it.

My last post was about amino acids:) But my signature, as always, has the augmentation links.

How do you keep from becoming hopeless and FEAR the future.

You remember that nothing is certain. The disease does not necessarily progress, we're all different. People are researching the disease now more than ever, so new knowledge is quite likely to enable new and more effective treatments. You're unique and different, so your experience will not necessarily be the same as anyone else's. No one is doomed. No one knows the future. And as Tracy (chipmunk) pointed out, most people with WED/RLS don't post on this board! They're too happy to bother!

So hang in there, this down phase will pass. Nothing is for sure, and there is a lot of hope out there!

[badnights]

Yup - and I edited it then saw your post, lol.

I was going to edit it for you, but thought that might be rude

[ViewsAskew]

Yup - and I edited it then saw your post, lol.

I was going to edit it for you, but thought that might be rude

Nah, I never would have known!

[pjmccoy1]

Pam, don't forget that people whose WED is well-treated don't post on this website! Most people find a treatment plan that works for them.

Chipmunk: How is your RLS doing? I had a complete meltdown last October. Was feeling some depression ramping up and asked about clonazepam upped dosage and freaked out my Neuro to the point I wasted a RLS visit and all he wanted to do was focus on Psych consult because I was tearing up after weeks of little to no sleep. And the side effects on Horizant and CLonazepam can increase depression or risk of suicidal thoughts. So he flipped out because I told him I just wanted to go to sleep forever. So he stops Horizant immediately which through me into a whirlwind of I suspect some kind of withdrawal. Something I've never experienced. I lost 13 lbs in less in 3 weeks, suffered IBS, insomnia, dry mouth, Burning Mouth Syndrome (these are all NEW symptoms) acid pain and horrific insomnia and RLS. Not even the clonazepam which normally knocked me out and made me groggy would work anymore. FInally got a new referral to another Neuro RLS "specialist" and hoping to be hopeful. Cannot take any med's for depression because of RLS exacerbation and have never felt so hopeless. But, alas, the psych I finally went to was wonderful and immediately found the RLS NEURO specilist and sleep specialist for me to see in June. I've been though hell. I'm willing to take Rx's but tramadol caused involuntary right arm and leg jerks and didn't really alleviate RLS completely but settled me down some also caused some respiratory weird symptoms never experienced before. Trazadone caused insomnia and dry mouth (supposed to help depression and put me to sleep - NOT!). Wellbutrin 150 SR was supposed to be the lifesaver for depression and hitting dopamine, also caused insomnia couldn't go to sleep at all, gain didn't have this before would only wake up occasionally. And all the new Rx's caused sweating. I just feel like all the Neuro's do is throw Rx's cocktails at you and hope one will stick. I am extremely sensitive to Rx's even natural herbs. Always need lowest dose. And tend to have opposite effect of what most "normal" people experience. Recently had crazy reaction to SAM-e even at 50mg now 30mg which helped mood but gave me the good kind of insomnia except for I crashed and burned (depression all time high) Sunday night and Monday (yesterday). TMI. I cannot believe no one knows what to do. Any my old Neuro wants me to add Lyrica or Opiates. Seriously. I'm NOT suicidal I'm just exhausted and my body feels like it's been poisoned. If I'd taken everything the NEURO specialist wanted me to take initially I would't be suicidal I would be permanently sedated. Praying, Praying, and PRaying through the tears and exhaustion and fatigue and burnout that this new Neuro referal might have a new plan. And BTW, Lyrica has "risk of suicide" all over it too. So, now not only am I afraid of side effects of Rx's now, but I'm depressed, anxious and fearful of anything that might cause suicide because my NEURO RLS expert was more concerned about depression than RLS and now I'm afraid they will give me a med that will made me suicidal. My faith will not allow that thank GOD I pray for that.

[Chipmunk]

I am the same way with being ultra-sensitive to meds. I rarely have any withdrawal symptoms though...it's weird. I recently started Lyrica and I really like it. I am only on 75 mg but it really does help. I don't want to go any higher because it causes water retention and constipation already.

About the depression meds: I found that I could sort of sneak an SSRI in if I started with a very small dose (like 10 mg Prozac). Any more would set my legs off. After being on a low dose of Celexa for a couple years, I was able to move to the next dose without it affecting my WED.

You might try an opiate to see if you can tolerate it. Just start with a very small dose. Or you could try Lyrica - I started at 25 mg and moved the dose up by 25 mg after a week or two.

[pjmccoy1]

I was on 25mg sertaline (Zoloft) and had been off it since 2011. After what I believe was the Neuro f/u meltdown visit and increased dose of clonazepam (been on .5mg max one time dose (up to .75 mg all day) for 10 years to 1mg @ night and combination of Horizant I think that increased the "Blues" and of course, lack of sleep. Anyhow, started 12.5 (split 25mg of Zoloft) and helped mood, anxiety tremendously but did ramp up the 5-10 RLS some. So, PCP recommended I get off it and then we tried the tramadol, and wellbutrin with NEURO's suggestion. Put me into INSOMNIA mode couldn't go to sleep on top of RLS issues and now depression. Which came first chicken or the egg, RLS induced by SSRI's or depression from RLS??? Concerned about the Lyrica he's really pushing that but stomach issues usually diahrea but other's have caused constipation too. Is the weight gain from water retention and are you uncomfortable. How crazy is that especially when it's for Diabetics neuropathy. Weight gain last thing you need with Diabetes. If I am may ask, how long have you had RLS? I am 51, had it since I was 40. But 7 years Sinamet and Clonazepam worked wonders. Pam

[Chipmunk]

I'm not sure whether the weight gain is all from water retention but it might be. I'm not uncomfortable.

I honestly don't know whether or not my SSRI had a hand in worsening my WED because I can't remember when I first started on one and if it was before or after the RLS started. I do know that I've always had difficulty getting to sleep my whole life - always very restless at bedtime.

I personally don't think benzos are worth anything when it comes to treating WED. They just make it so you don't remember being awake all night long but do nothing to relieve the symptoms and movement. JMHO.

[pjmccoy1]

Tracy:
Are you still on the Lyrica? What dose? I'm down to failing Horizant again.... yes new Neuro wanted me to go back on Horizant after last Neuro ripped it from me because of depression that send me into a tailspin I'd never experienced before in my life. Never have I had withdrawl from a Rx or depression this bad. Never like this. Anyhow, back on Horizant plus add back the Zoloft 25mg (but I only took 12.5mg) and yet I still had RLS ramping up during day and progressing up to upper thigh achiness and RLS too. Now depression getting worse again, very dry eyes and some occasional mild right hand tremors (this is new). So titrating off Horizant last 5 days to 300mg (even though manufacturer says not needed) not going down that route again. Trying to see of 300mg Horizant will lessen depression. Psych added another anti-depressant, viibryd, at lowest dose had to cut in half and had horrific nighttime RLS with pain this time. So off that anti-depressant. I'm down to suck it up and live with Horizant lower dose and naturals, calmlegs (valerian) go back on St. John's wort at lowest dose because it causes my vision to get really blurry or try Lyrica (same class as Horizant - gabapentin family - depression risk for me) or two Neuro's recommending Methadone. I'm mortified.

[Chipmunk]

I'm on 50 mg. 75 mg makes me too tired the next day. I noticed that at first I would have to do 100 mg to get full relief of my symptoms but over the months I have been able to cut back on the nightly dose. I don't know if it's building up in my system or what, but I'll take it (knock on wood)!

[pjmccoy1]

Tracy, Thank you for the info.

[Frunobulax]

Tracy:
Are you still on the Lyrica? What dose? I'm down to failing Horizant again.... yes new Neuro wanted m e to go back on Horizant after last Neuro ripped it from me because of depression that send me into a tailspin I'd never experienced before in my life. [...]

Lyrica is used to treat anxiety. However, it seems that quite a lot of patients develop depressions from taking Lyrica - in fact it seems to be more common with Lyrica than with Horizant/Gabapentin. I had to quit Lyrica because of severe depression, too.

I don't like taking opioids, but there is nothing else that works for me (and has acceptable side effects). Unfortunately I'll have to switch to Oxycodone (a more potent opioid) now - no idea where this will end, with the first WED symptoms developing just 4 years ago...

[ViewsAskew]

Tracy:
Are you still on the Lyrica? What dose? I'm down to failing Horizant again.... yes new Neuro wanted m e to go back on Horizant after last Neuro ripped it from me because of depression that send me into a tailspin I'd never experienced before in my life. [...]

...I don't like taking opioids, but there is nothing else that works for me (and has acceptable side effects).

I don't know of anyone here who wanted to take ANY drugs, let alone opioids. Most people here have fought taking drugs. I went untreated for over 25 years - initially because it was manageable, but I waited until my life was falling apart before I finally agreed to take drugs. I had NO idea of how insane that would become - I thought I'd take one drug and it would work for a long time. I never envisioned multiple doctors, doctors refusing to continue to treat me because of the opioids, depression, memory loss, that I'd have taken upwards of 20 drugs in various combinations....and so on.

Yet, here we all are. And most of us continue to manage, to move forward, to have a life, even if that life is significantly differently that we imagined.

[Frunobulax]

Ann, I wonder if we should be more careful with our language, especially what we call "drugs", because the term has a definitive negative touch (at least over here) and people automatically associate it with illegal/recreational drugs. For some reason most people refer to opioids as "drugs", while the other WED meds are "meds" (or similar). I would strongly argue that opioids are no worse than dopamine agonists, benzodiazepines or alpha2delta-ligands - they can have serious side effects, can be used to "get kicks" and they have addictive potential.

From my personal experience:

• Dopamine agonists (took them for 3 years) pretty much destroyed my life and made me suicidal, and I had severe withdrawel symptoms when I finally realized that they were responsible and stopped them. No cravings or compulsive use, but clearly physiological dependence.
• Lyrica and Gabapentin (6 weeks) gave me severe depression, weight gain and nausea, and a breakdown when I tapered them. I was unable to work for almost 2 months, with burnout symptoms, and had to work part time for 2 more months. How about that for withdrawel symptoms?
• A short trial with Clonazepam (3 weeks) resulted in a severe insomnia lasting almost two months. No cravings or compulsive use, but clearly physiological dependence.
• Tilidin (my opioid, 8 months) - no side effects to speak of, no problem to taper the medication (did it once when I tried to switch Gabapentin/Lyrica). No cravings, no compulsive use, and I never got "high" on them (a single light cigarette on the other hand gives me a significant dopamine kick).

And still some doctors have no trouble prescribing dopamine agonists, a2d ligands and benzodiazepines, but treat me like a drug addict because I use Tilidin. Could anybody please explain why?

Yes, it might be easier to misuse opioids. But here in Germany it is way harder to get opioid prescriptions than to buy and consume illegal drugs, so the real drug addicts usually don't bother (except if they need potent painkillers). (I won't even start to ramble about the fact that smoking is legal and socially accepted.)

[ViewsAskew]

Point taken. We have often had the discussion here regarding what should be discussed in which forum - for example, where does kratom fall? It's not any different, in some ways, from the opioids we take. But, it's not regulated in the US in the same way, so it is very different in other ways. Per the term drug, in the US, we often call them "drug" companies rather than pharmaceutical companies, so there may be more acceptance of that word for some, but that doesn't mean we don't associate drug with illegality. I equate drugs with both pharma and non-pharma substances that have an effect on the body. It may or may not be legal, it may or may not be pharma grade. If I say pharmaceutical, I have to exclude all the other things people take, such as poppyseed tea, marijuana, and the like. I don't know what other term to use. Substance doesn't necessarily imply the same thing.

Semantics is a bugger, isn't it?

I think many cultures have a lot of ambivalence about the use of drug-type substances. Doctors often think of these substances as "good" or "bad", just as the layperson does - and each person and doctor labels things differently! To some people, any pharmaceutical substance is good, to others, only some are good. And so on. We also have perception issues related to whether it's "natural" or not. Some of us would rather take something natural - but that doesn't always mean safer by any means. Arsenic is natural.

I would absolutely agree with you about one not being worse than another. To me, it's all about what works best for the situation, the person, their physiology. It has nothing to do with legality, morality, or even possibility of abuse. Those are completely separate issues. But, I doubt most people see it that way, if they were to think about it.

[EeFall]

In the US opioid prescriptions for the last few years have been getting increasing heat from government, public opinion, and the press. It is as if they believe that doctors are over prescribing and that patients are getting hooked needlessly. They also seem to believe that patients are seeking it out because they are already addicted. I know from the 3 sleep doctors that I have had that they are getting pressured to not prescribe it. One of the doctors, who I no longer see, is downright paranoid about prescribing opioids. Opioids are addictive, they can cause death if not taken properly, but the fact is that I need them to continue living a halfway normal life!

I read an article a few months ago that this paranoia is actually causing thousands to be in constant pain because they cannot get the opioids they need, or if they do prescribe them they won't give them enough to be pain free. If I were cut off from opioids my RLS is so bad I won't sleep for days at a time and can't even sit down for at least 16 hours a day. With all the talk of making opioids more difficult to get it just increases my stress level, and I assume many who now depend on them to overcome medical problems. The doctors within each field such as sleep doctors should have the final say in prescribing medications, they are the experts. The government, public opinion, and press should have nothing to do with it.