New here, complicated story

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LauraB
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Joined: Sat Jun 08, 2019 12:04 am

New here, complicated story

Postby LauraB » Sat Jun 08, 2019 5:15 am

Okay, here goes. <deep breath>
I am a 58 yo female. I don't yet have an official diagnosis, but PCM is operating under the RLS idea until I can get tested. I've had symptoms for about 3 years now, but they're getting worse rapidly, to the point that my sleep quality is very low and is impacting my waking life. My story is complicated, and I don't know what is relevant, so I'm going with bullets.

Current diagnoses:
* sleep apnea
* PLMS
* C-PTSD
* bipolar 1
* anxiety disorder
* diabetes type 2 (controlled, now off insulin)
* diabetic neuropathy (not yet diagnostically confirmed)
* hypertension
* high cholesterol
* obesity

This health nightmare started 20+ years ago with the bipolar dx, taking me from completely healthy to this. The classic snowball effect. Bipolar meds to weight gain to diabetes to sleep disorders, etc. This RLS is just the latest addition to my alphabet soup. I list everything here, then, because I know how interrelated these things can be.

RLS symptoms:
* constant leg movement in bed, at least 5× per week at medium severity, 1x every couple weeks at high severity
* relatively constant leg mvmt when awake - knee bouncing, toe tapping, rubbing feet together (I've thought it was anxiety, but...)
* repeated crawly feeling in pelvic area that feels like bladder urges, at night only, but little to no urine - every night, 1x on good nights, up to 8x on bad - am wondering if RLS up in my pelvic area could be cause? Urologist cleared me. PCM wonders if short walk to bathroom could be relieving impulse.

Other neurological factors that might be relevant (I've often wondered if the following could have resulted in RLS - symptoms started very soon after the second ended):
* developed tardive dyskinesia 8 years ago after 10 yrs on a BP med (Horizant?) - symptoms (mostly) disappeared after getting off it
* almost 50 ECT (shock) treatments over a 15 month period, 3 yrs ago - significant side effects continue (memory gaps, some loss of cognitive function)

Misc:
* I am not eligible for any RLS meds that work neurologically as they could interfere with current psych meds (Lexapro, Lamictal, occasional low dose Klonapin)

My god. How pitiful is this?!!

badnights
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Re: New here, complicated story

Postby badnights » Sat Jun 08, 2019 6:20 am

I am not surprised that WED/RLS is added to your woes; it's opportunistic that way. You can be susceptible because of your genetic makeup yet never get the disease; but as soon as something goes wrong and the body is under stress, that's when it pops up its evil head.


WED/RLS of the pelvic region has been described in the medical literature. And of the genitalia specifically, which is a bizarrely unpleasant experience.

I think you might want to pursue two avenues of thought. First, what are the possible triggers that might have entered your life around the time symptoms started? There is the ECT, and who knows if that could have triggered it, though I wouldn't be surprised. But other things are anti-histamines, anti-psychotic meds, and anti-nausea medications. Some SSRIs can also cause WED/RLS symptoms in some people - when did you start yours? (and tricyclic ADs in many people). But the Lamictal that you take should actually be helping any RLS/WED that you have; and the Klonopin helps a few people as well, although mostly it is ineffective against the urge-to-move symptoms. Besides medications and supplements, think of major changes to your diet that happened around the time symptoms started. This whole line of thought is sort of a long shot, because your symptoms came on gradually over a couple of years.

My second suggestion is that you look back to the very beginning - the bipolar. Many mental health disorders are triggered by unhealthy gut microbiota. So also are neurological problems. Any steps you take to getting healthy ought to start with a healthy gut, meaning you might want to look at things like adding raw fermented vegetables to your diet, increasing dietary vegetables of all kinds, eliminating foods with added sugar, and avoiding starchy foods; you must know something about controlling diabetes with diet but there might be more there to learn; and you might want to read up on leaky gut and SIBO to see if that might be a problem. Those researches will probably lead you down yet more paths, from which you can pick a way back to better health.

You should definitely get the ferritin concentration of your blood tested, and supplement with oral iron if it's below 100 and if your doctor agrees that you won;t be in danger of iron overload. Simply raising ferritin can alleviate symptoms. (And be warned, starting dopamine-type meds (still unfortunately regarded as first choice by many doctors) while ferritin is less than 75 greatly increases your risk of augmentation - a nightmarish worsening of the disease caused by the medication that is supposed to help.)

There are three main classes of medication used to treat WED/RLS and you're already taking one (anti-convulsants) so that would be a sensible one to take if you need treatment. The others are dopamine agonists (many cautions apply to these) and opioids.

There is no test for WED/RLS: the diagnosis is based on patient description. A sleep study is sometimes ordered to rule out mimics and other sleep disorders.

I hope some of this sends you in the right direction. Keep learning as much as you can, because your doctors may not be very knowledgeable about this disease. Keep hanging in there, and together you and your doctors (and us :) ) can figure things out!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

LauraB
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Joined: Sat Jun 08, 2019 12:04 am

Re: New here, complicated story

Postby LauraB » Sat Jun 08, 2019 7:10 am

Edit to my original post (I can't figure out how to make this change to the post, itself):

The drug I was taking when I developed tardive dyskinesia was Abilify - an antipsychotic - not Horizant.

LauraB
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Re: New here, complicated story

Postby LauraB » Sat Jun 08, 2019 7:33 am

Thank you, Beth, for your thorough reply. Silly, maybe, but I'm feeling better, already, just having found a knowledgeable (and active!) community.

Your suggestion of gut connections is VERY interesting, and I will definitely be doing a thoughtful review, as you suggest. What's so interesting about it is that I didn't mention that gut problems have been a lifelong issue for me, and that I have just recently connected this physiological issue with my mental issues - specifically, that my chronic constipation is related to my childhood sexual abuse. I began intensive trauma (PTSD) treatment just 3 years ago (yes, that same timeframe when the RLS symptoms started), and my gut immediately started acting up even more. With careful attention (and a LOT of research on normalizing the gut microflora), I have made quite a bit of progress in this area - although there is still a long way to go.

The notion, therefore, that my gut issues could be related to the RLS is terribly exciting. Thank you!!

ViewsAskew
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Re: New here, complicated story

Postby ViewsAskew » Sat Jun 08, 2019 6:55 pm

Hi LauraB - all too many of us here are familiar with the daisychain of one thing leading to another. Not your story, but ones that start with one thing and snowball. We are still in the infancy (I believe) of what we understand about the body as a system and how everything is connected, such as Beth's point about the gut.

Abilify, IIRC, is associated with increased RLS.

A virtual hug to you. Working on all of these things at once can be both exciting (the thought of being done with them), terrifying, and overwhelming. Sounds like you are doing all you can for yourself, which is in itself a wonderful thing.

I echo Beth when she mentioned that RLS cannot be proven by any test. PLMD or PLMS can, and it is often associated, but not RLS. There are criteria and my guess is that you would answer positively.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Location: Northwest Territories, Canada

Re: New here, complicated story

Postby badnights » Sat Jun 08, 2019 7:06 pm

Interesting that you went years on Abilify before feeling any RLS/WED symptoms; perhaps they were building up slowly over that time? If they only appear after you had stopped using the Abilify, how long after? And how long have you been off it now? It's really tempting to relate your RLS/WED to the Abilify, because Abilify is known to cause not only tardive dyskinesia but also akathisia as a side effect, and to worsen WED/RLS in people who already have it.

What meds are you treating the bipolar with now - only the Lexapro and Lamictal? (for my own memory's sake: Lexapro/escitalopram oxalate is an SSRI AD and Lamictal/lamotrigine is an anti-convulsant) (btw When you wrote BP in your post, I thought blood pressure!! haha I should have known.) Beware that lithium is also known to exacerbate WED/RLS, but all the meds in the anti-convulsant class should be helpful or neutral for it.

It is only normal to feel hope after interacting with other people about your problems. It shrinks the problems into a more realistic and manageable size. I was given hope by the members of this board when I first came here, desperate and thinking that death might be the only solution. Keep looking for answers, and keep us up to date on your search. There are lots of people here who have more things to contribute that will help you!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

LauraB
Posts: 5
Joined: Sat Jun 08, 2019 12:04 am

Re: New here, complicated story

Postby LauraB » Sat Jun 08, 2019 10:58 pm

Thank you, Ann and Beth. To answer your questions:

Yes, I am aware that there is no diagnostic test for RLS. The tests I was actually referring to were to confirm or rule out the diabetic neuropathy, and to clarify which symptoms are which. I have looked at the RLS "qualifications," and I do, indeed, meet all 4 criteria. Definitely. There are additional symptoms that impact my sleep, however. I'm thinking that they are neuropathy, but I don't know. Maybe you guys can help to clarify?

Highly sensitive areas on my feet, to the point where any pressure at all - even the sheet touching them - is super uncomfortable; hot and swollen- feeling feet (like my toes are going to literally pop from the pressure, although there is no actual, visible swelling); shooting pains mostly on the tips of my toes, like someone is shoving a needle into the nailbed. Sometimes I have the clear RLS symptoms when these things happen, but sometimes I don't. The worst nights are when it all happens at once, in addition to my periodic mind-racing issues. Ugh.

Regarding the Abilify, I was taken off it around 5 or 6 years ago when the tardive dyskinesia symptoms appeared, in addition to a bizarre series of waking nightmares I was having. I thought of them as dream hallucinations - "waking up" to find a body hanging from the ceiling right by my head, for instance, screaming and then really waking up. The neurologist had a name for this, but I don't remember what it was, although it was considered a sleep disorder of some kind (an REM disorder, maybe?)

At any rate, both of these symptoms ended (mostly - I still thrust my tongue, but only inside my mouth now, although it's shifting my bite significantly) when I stopped the Abilify. I wasn't aware of any RLS symptoms appearing at that time, but if they were mild I might not have noticed them. Those were baaaad years.

Incidentally, I have never had my bipolar controlled, no matter how closely I adhered to multiple treatment plans. The doctors gave up on me in mid-2016 when all options were exhausted, including the shock treatments (over 50 in a 15 month period - maybe double the generally recommended number) not working. Over the previous 20+ years, they had tried every psychotropic medication out there, including off-label and experimental drugs. Who knows what's been hurt or destroyed in my brain? It's a miracle I can still maintain a normal, if somewhat limited, life.

What changed in 2016, when they gave up on me, was that I was FINALLY referred for trauma treatment by my therapist of 18 years. (She'd known about my abuse for 10 years, since memories started returning. I don't know why she didn't pursue that years ago, but that's another story. I don't see her anymore btw.) The upshot is that I've made more psychological progress in the last 3 years than in the previous 20. They are now thinking that I may not even be bipolar. The complex-ptsd symptoms are very similar. My psychiatrist has now begun weaning off those meds very slowly. We'll see.

Oh, and I am only on the three psych meds I listed - Lamictal, Lexapro, and Klonapin as needed. This cocktail was initiated 3 years ago, and hasn't changed.

Oh. That's not quite right. I did have one drug added for about a year during this past 3 years - gabapentin. I weaned myself off of it (against medical advice, btw) when I developed a BUNCH of scary symptoms. Some kind of toxic syndrome I identified online, after a string of medical specialists tested me, found nothing in their specific purview, and wrote me off as a hypochondriac without any cooperative consultation. I'll look up the name of the syndrome, but you likely already know what it is. I've been off gabapentin (that was a godawful withdrawal process) for about a year, and that cluster of symptoms have passed. Just to be clear, however, the RLS issues were already present before the gabapentin episode, although it's possible they worsened during that time, I suppose. Also, I am not sure of the dates, offhand, but the possible neuropathy symptoms may have started after that. I'll have to check.

I'll be thinking about this course of events in more detail, but for now, all I know is that the RLS symptoms became painfully obvious just a few months before I started trauma treatment 3 years ago. I distinctly remember already having the pelvic/"urinary" urges by the time I was inpatient for the first time at the trauma unit. The sensitive and hot/swollen feet problem started in the last 1 1/2 years or so, I think.

I think that covers everything y'all asked about for now. Thanks for bearing with me.

stjohnh
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Location: Palo Alto, California

Re: New here, complicated story

Postby stjohnh » Sun Jun 09, 2019 1:13 am

LauraB wrote:...
* I am not eligible for any RLS meds that work neurologically as they could interfere with current psych meds (Lexapro, Lamictal, occasional low dose Klonapin)


Iron has already been mentioned, but I will add to that:
RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

If you qualify, it seems like this would be perfect for you.
Blessings,
Holland

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New here, complicated story

Postby stjohnh » Sun Jun 09, 2019 1:17 am

LauraB wrote:... I'm thinking that they are neuropathy, but I don't know. Maybe you guys can help to clarify?

Highly sensitive areas on my feet, to the point where any pressure at all - even the sheet touching them - is super uncomfortable; hot and swollen- feeling feet (like my toes are going to literally pop from the pressure, although there is no actual, visible swelling); shooting pains mostly on the tips of my toes, like someone is shoving a needle into the nailbed. Sometimes I have the clear RLS symptoms when these things happen, but sometimes I don't. ...


You certainly have a lot of problems, and symptoms that could be several problems, but the sensitive areas on you feet are very likely from diabetic neuropathy, as you suspect.
Blessings,
Holland

LauraB
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Joined: Sat Jun 08, 2019 12:04 am

Re: New here, complicated story

Postby LauraB » Sun Jun 09, 2019 2:09 am

Thanks for the info, Holland. I will definitely be checking the iron out!

badnights
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Re: New here, complicated story

Postby badnights » Fri Jun 14, 2019 4:08 am

Ah Laura what a sad tale in many ways. I'm glad you're here, I hope you can find some help here. Your PTSD diagnosis is encouraging and gives you a path that might lead to good health.

It seems the lag time between Abilify and onset of WED/RLS is too long for the Abilify to have been causative. The thinking in some circles is that although the idiopathic form of WED/RLS is genetic, not everyone who is susceptible will develop it; it requires environmental triggers, perhaps prolonged ill health or other physiological stresses such as you've had

Pursue the iron angle; and be cautious about accepting prescriptions for dopamine agonists (learn more about augmentation first).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

RLS Ouch
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Joined: Mon Sep 10, 2018 12:52 am

Re: New here, complicated story

Postby RLS Ouch » Thu Jun 20, 2019 5:47 am

Sorry to hear about your td laura. I have a family member with the contion. My heart goes out to you. Any thing help? With your recovery from it? Td is proof (at least to me anyway) that even though the fda says something is safe doesnt mean it is. Td shouldn't even have to be a risk factor for someone trying to improve there mental health. Any way dont want to get on my soap box.

sleepdancer2
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Joined: Sun Jun 29, 2014 7:46 am

Re: New here, complicated story

Postby sleepdancer2 » Tue Jun 25, 2019 8:52 am

You've got a lot on your hands to sort through. Since you say none of the treatments have helped your bipolar disorder, should we assume none of the meds you are on are for your bipolar disorder? I have to wonder how your body/brain might respond to healthy sleep. Long term sleep disruption can do strange things to our brains. Maybe even your medication needs would change with healthy sleep. Is your sleep apnea being treated? If so, are you pretty sure the treatment is optimized for you? Reason I'm asking is sleep apnea events can cause the need to urinate. Before my sleep apnea was managed I felt the need to urinate many times a night, even when there was little left to pee out.

Not eveyone has the same results with their jumpy legs, but I have been able to manage my periodic limbs movements with a TENS Unit. However, when I was experiencing augmentation and later withdrawal, the TENS wasn't helpful. Getting off problematic meds and finding my baseline again left my legs manageable by TENS.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c


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