RLS and ADHD

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KJOYCE0003
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RLS and ADHD

Post by KJOYCE0003 »

Does anyone have both RLS and ADHD? I was told I need to go to a doctor for this. I took some test online and after doing some research found that having both are common.

Polar Bear
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Re: RLS and ADHD

Post by Polar Bear »

I don't have ADHD.... but I do have a busy busy gotta be at something nature, combined with an anxiousness that crosses all possible bridges for any given situation, that never needs any bridges at all. Double check stuff, and then check again, just to be sure !!

I've just put in a search for ... rls adhd.... in the search box at the top right of the page and there were many threads available. However it does mean going through each one.
Betty
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ViewsAskew
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Re: RLS and ADHD

Post by ViewsAskew »

Not sure how many people currently posting do, but throughout the years, many have. If you search on ADHD or ADD, you'll likely find their posts - it might help give you more info, especially as many of them may not be currently posting.

It's often thought that a percentage of children are diagnosed with ADD or ADHD when they actually have WED/RLS. Both have dopamine issues in common.

I just read Polar Bear's post - guess we think alike! I agree with her, too, that there is a component of RLS/WED that is very busy-busy, anxious, needing to be moving from thing to thing.

OH - I think Tracy may have ADHD....look for posts by chipmunk.
Ann - Take what you need, leave the rest

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QyX
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Re: RLS and ADHD

Post by QyX »

I was diagnosed with ADD in my youth but in the past years we aren't sure anymore if I really do have it or not. Though I benefited from stimulants treatment for a couple of years.

From what I've read it looks like that there is some kind of correlation between ADD/ADHD and RLS, meaning that people with ADD/ADHD are more likely to have RLS/WED and the other way round. This doesn't seem surprising because both disorders seem to have something to do with a dysfunctional dopamine system.

If you think you suffer from ADD/ADHD I would go see a specialist. Treatment with stimulants during the day can improve sleeping quality during the night in ADD/ADHD patients.

When I take stimulants now I can't really say if I still benefit from them. I also have to the say that most of the time I do not like them anymore.

WildOne86
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Re: RLS and ADHD

Post by WildOne86 »

I have both , myself, or at least, thought I had ADHD as a child, but I think I was misdiagnosed.. I don't really have dramatic attention problems anymore , except those caused by the RLS discomfort , which sadly, is frequent.. (they do say that a majority of people "outgrow" ADHD as their brain function keeps improving until their early 20s.. but many still have symptoms as adults). Stimulants do help both my daytime and nighttime symptoms, but I cannot tolerate their mood-altering and personality altering effects. One thing I can say, is that, you should find out if you actually have ADHD (as defined by a real diagnostic screening questionnaire) , before considering ADHD treatment. Stimulants are horrible for RLS when you quit taking them , hypothetically due to lower dopamine activity.

One thing I can say was that when I was taking stimulants, I did not have many RLS issues at all. Now, off stimulants, I have severe RLS that is usually barely controlled by daytime and nighttime dopamine agonists. ADHD drugs have shown evidence in lab rats that they can damage dopamine transporter functions .. this hasnt been proven whatsoever in the real world .. but it is another cautionary factor to consider.

I think, based on simple reasoning, that it is more likely that RLS is misdiagnosed as ADHD , than the other way around. I also agree with Qyx in that, it makes more sense that people who actually have ADHD are more likely to have a real case of RLS than the other way around -- adhd has been proven to relate to underactive dopaminergic systems in a variety of places .. whereas RLS has not really been linked conclusively with specific brain regions or neurotransmission problems .. that is to say , RLS doesnt directly cause attention problems or cognitive focusing issues on its own (although a lot can be said for the effects of RLS induced sleep deprivation on these factors!) .

Hopefully this helps. I would just recommend being careful before accepting any label or diagnosis . RLS is probably easier to diagnose than ADHD, but is probably underdiagnosed more often, ironically!

Chipmunk
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Re: RLS and ADHD

Post by Chipmunk »

Yes, I do have ADHD and take Adderall for it. It is suspected that lack of dopamine is a part of ADHD, and stimulants increase the amount of dopamine in the brain and in doing so help with the ADHD. So it makes sense that people with a defect somewhere in their dopamine delivery system would be susceptible to both disorders.

I would challenge this statement
ADHD drugs have shown evidence in lab rats that they can damage dopamine transporter functions
as we actually have a long history of research on how the brain responds to stimulant use, of similar length to the body of evidence on how opiates affect the body/brain. Going cold-turkey off stimulants, opiates, benzos, etc. can cause major problems but if one slowly weans off of them there is not the same risk of adverse effects.

Call around and find a psychiatrist that specializes in ADHD and/or ask your primary care doctor who they would prefer. There are many things that appear to be ADHD but actually are something else, so it's important to get an opinion from someone who knows what else to rule out when someone says they think they might have ADHD.
Tracy

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badnights
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Re: RLS and ADHD

Post by badnights »

Call around and find a psychiatrist that specializes in ADHD and/or ask your primary care doctor who they would prefer. There are many things that appear to be ADHD but actually are something else, so it's important to get an opinion from someone who knows what else to rule out when someone says they think they might have ADHD.

This is useful information for me to pass on to my son. He's 24 now, and has WED, probably ADD, and a tendency to perfectionism, which together have led to anxiety and depression.

Going cold-turkey off stimulants, opiates, benzos, etc. can cause major problems but if one slowly weans off of them there is not the same risk of adverse effects.

What are the possible major problems that can happen if quitting opioids cold turkey? I have comforted myself, when I think of being stuck out in the bush or somewhere without my meds, that even though I will suffer wild WED and vicious withdrawals, it can't kill me. Have I been naive? What is the potential for lasting damage?
Beth - Wishing you a restful sleep tonight
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WildOne86
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Re: RLS and ADHD

Post by WildOne86 »

badnights wrote:
Call around and find a psychiatrist that specializes in ADHD and/or ask your primary care doctor who they would prefer. There are many things that appear to be ADHD but actually are something else, so it's important to get an opinion from someone who knows what else to rule out when someone says they think they might have ADHD.

This is useful information for me to pass on to my son. He's 24 now, and has WED, probably ADD, and a tendency to perfectionism, which together have led to anxiety and depression.

Going cold-turkey off stimulants, opiates, benzos, etc. can cause major problems but if one slowly weans off of them there is not the same risk of adverse effects.

What are the possible major problems that can happen if quitting opioids cold turkey? I have comforted myself, when I think of being stuck out in the bush or somewhere without my meds, that even though I will suffer wild WED and vicious withdrawals, it can't kill me. Have I been naive? What is the potential for lasting damage?


Quitting opioids is usually not considered dangerous, unless the person has an underlying health condition which could be exacerbated (in a dangerous way) by dehydration, diarrhea, increased heart rate, or increased blood pressure. Quitting opioids has not been known to cause any damage beyond severe discomfort. There are VERY few cases in the literature regarding opioid withdrawal being dangerous .. you can probably count on one or two hands the number of people who have died from it throughout history. (this is a guess and is not my medical opinion). The main symptoms of quitting opioids are diarrhea, sweating, RLS, and adrenergic dysfunction (dizziness, hot/cold flashes) .. we're talking discomfort but not danger, unless for some reason you couldn't replenish your fluids. Many serious heroin addicts are detoxed in a hospital setting without anything beyond supportive care (fluids, anti diarrheals) .. unfortunately I know this first hand due to a friend who was an opioid addict.. I sat with him through his withdrawals in the hospital, he was more or less "fine" with some meds for hot flashes and diarrhea .. which I didn't really expect since he was a pretty high dose opiate user.

Quitting dopamine agonists is actually mildly dangerous, since neuroleptic malignant syndrome is a distinct possibility requiring hospitalization. No known issues regarding damage or permanent effects though .. and if you have quit DA's before at a similar or higher dose and didn't end up getting NMS, you would likely be OK to do it again.

Quitting benzodiazepines cold turkey is also fairly dangerous, due to the risk for seizures, seizure "kindling" (basically acquiring epilepsy). This can cause some lasting damage due to excitotoxicity. As benzos are similar in action to alcohol, this also goes to show why most clinicians would not have someone quit alcohol cold turkey without medical support.. you need a taper of gaba-ergics to prevent seizure induced damage. However, this can be accomplished with a 1 week or so supply of valium, since it will perform an auto-taper due to its 60-100 hour half life. Also there is the fact that each time you quit benzodiazepines, alcohol, or gaba-ergics, there is a phenomenon known as kindling which takes place every time you quit, making subsequent withdrawals worse and more dangerous (basically the brain amplifies circuits that are hyperactive in withdrawal, then 'learns' to amplify them each time, making for higher seizure risk).

Hopefully I didn't scare anyone. These are real issues to consider for anyone going on these classes of drugs. Theoretically though, if you have a few DA's on hand to stop NMS if it occurs, keep a bottle of high proof alcohol on hand to prevent seizures in benzo withdrawal, and have some Immodium on hand (stops diarrhea and sweating in opiate withdrawal) , you are likely able to ride out most of these, if it came to a natural disaster/national emergency type event. It's also worth noting that most insurance companies and retail pharmacies have plans in place or tentative plans, to provide extra emergency refills if you are in a disaster zone. At our insurance company, if an area experiences a natural disaster (such as a wildfire or tornado) , we change the benefit rules so that people can just get whatever refills they need even if we normally wouldn't pay for it, and the local pharmacies will allow med refills without a doctor's authorization in emergent circumstances.

Hopefully this helps, this has been an issue that has plagued my mind since I got started on this road. Personally, I would be most worried about literally going crazy from the severity of DA withdrawals. The other two .. more or less manageable if you know what you're doing.

There are also natural plant based DA's , the most well known being the blue lotus flower , which contains aporphine and apomorphine .. not sure if this flower grows anywhere in the western hemisphere, but there HAVE to be other DA's out there if you are in a wilderness survival situation.

ViewsAskew
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Re: RLS and ADHD

Post by ViewsAskew »

I've always understood that we are rarely at doses high enough to cause issues with DAs - this is more of an issue with those who take DAs for Parkinsons and at a MUCH higher dose than we do. The specialists routinely suggest cold turkey when a person has augmentation.

From the studies I reviewed, the vast majority of these cases were taking levadopa. I couldn't find anything about the dosage patients were taking to see what the low end was.

The rate of this in studies was .02 to .3 percent, according to one review of the literature - and all were Parkinson's patients. I couldn't find any reference of RLS/WED/PLMD in the literature, but I don't have the access Tracy and WildOne86 have. Most of the cases are with antipsychotics.
Ann - Take what you need, leave the rest

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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.

WildOne86
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Re: RLS and ADHD

Post by WildOne86 »

ViewsAskew wrote:I've always understood that we are rarely at doses high enough to cause issues with DAs - this is more of an issue with those who take DAs for Parkinsons and at a MUCH higher dose than we do. The specialists routinely suggest cold turkey when a person has augmentation.

From the studies I reviewed, the vast majority of these cases were taking levadopa. I couldn't find anything about the dosage patients were taking to see what the low end was.

The rate of this in studies was .02 to .3 percent, according to one review of the literature - and all were Parkinson's patients. I couldn't find any reference of RLS/WED/PLMD in the literature, but I don't have the access Tracy and WildOne86 have. Most of the cases are with antipsychotics.


True story!

It may be that i am biased because of feeling like I was going to die :lol: .. NMS is no joke, but, it is exceedingly rare, I admit. It's just something they drill into us in school so it's occasionally on my mind. The only official medical recommendation that we are taught is to watch for NMS symptoms, and if they occur, administer another DA, and the person will be fine.

Chipmunk
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Re: RLS and ADHD

Post by Chipmunk »

Thanks for that Wild One! The only thing I know of for sure that can cause permanent damage is the benzos. I know of someone who went off them cold-turkey and ended up with Parkinson's, which never got better. But he was a heavy user (was a dentist and could order them by the bucket-full).

I think going cold-turkey off the opiates can cause your body to take a longer time to adjust. I think Eefall was talking about this with it taking a while to have his sense of smell "reset itself" so to speak. Gradually cutting down can make that transition less noticable.

Sorry to alarm you! :oops:
Tracy

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WildOne86
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Re: RLS and ADHD

Post by WildOne86 »

Chipmunk wrote:Thanks for that Wild One! The only thing I know of for sure that can cause permanent damage is the benzos. I know of someone who went off them cold-turkey and ended up with Parkinson's, which never got better. But he was a heavy user (was a dentist and could order them by the bucket-full).

I think going cold-turkey off the opiates can cause your body to take a longer time to adjust. I think Eefall was talking about this with it taking a while to have his sense of smell "reset itself" so to speak. Gradually cutting down can make that transition less noticable.

Sorry to alarm you! :oops:


Yes. The only case in which permanent damage has been relatively "proven" so to speak , is with the benzos. That is due to over-excitability related neural damage. Opioids don't have a similar effect on the brain, however, since opioids do affect the inhibitory dopaminergic receptors "downstream" of the endorphin system mediated effect .. one would think they could cause some RLS issues in the POST-acute setting .. that is, the opiate receptors re-regulate themselves (in this case, upregulation/receptor growth following drug discontinuation), fairly quickly (within say 10 half lives of the drug) .. whereas the other downstream receptors may not re-regulate as quickly (i am thinking the d2, d3, and potentially the alpha 2) .. This is theoretical .. but, we do know in practice, that there is something known as PAWS (post-acute-withdrawal-syndrome), which lasts after discontinuation of opioids, and is related directly to how quickly one discontinues them. In my personal opinion, this would be due to differentials between receptor regulation. PAWS however, typically goes away after some indeterminate period of time (6-24 months in heavy heroin or methadone 'maintenance' patients) .. I was on opioids for 6 months (low dose) one time due to a severe injury . Due to fear of RLS and withdrawal symptoms, I tapered extremely slowly, and didn't experience any "PAWS".

Personally, and in my constant theoretical approach to these issues, I hypothesize that the D2 family of receptors is very 'finicky' (*perhaps* .. they downregulate VERY easily and upregulate slower) .. which is why we see augmentation, rebound, and tolerance to be such a problem. I dont think there is any scientific evidence to back up 'permanent' problems with these, but you do hear a lot of reports of people who have worsened RLS or similar symptoms from any drug that has effects on the receptor family (opioids, dopamine agonists, some anti-psychotics, some stimulants).

Very interesting stuff. I am hopeful that with new advances in PET scanning, researchers will be able to better characterize just exactly how these receptors work and adapt.

With regard to the amphetamine induced transporter damage, a pubmed search for 'amphetamine neurotoxicity' will prove my original point on that. I'm not saying that ADHD drugs cause permanent brain damage in humans .. just, that scientists have long known that there is POTENTIAL for neurotoxicity at a cellular or even protein (transporter) level, for decades, since it happens in mice. Whether that means anything clinically in humans or even if it happens molecularly in humans, is up for debate (outside of those isolated case reports where people IV'ed grams of methamphetamine)

wyldaeval
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Re: RLS and ADHD

Post by wyldaeval »

:shock: After reading and trying to comprehend everything in this thread, I've decided that I'm never going to go "cold turkey" off any of my medications. With the combination I'm on, I might end up in a straight jacket.

As for WED/RLS and ADHD, I'd been wondering for some time if I didn't have ADHD that went undiagnosed in childhood. I realize it isn't a replacement for actually seeing a doctor for a true diagnoses, but I've taken a few online tests for ADHD and the outcome is always the same. Yes, I do seem to have that going on as well. I've always been a "busy busy, gotta be doing something all the time" person and I'm known for not being able to sit through an entire movie. My husband just gives me the "Spock eyebrow" when I get like that because I seem to start several projects at one time, causing a mess in my wake and taking forever to finish any of them. :lol: I did read something about the correlation between WED and ADHD not long ago. My first thought...Great! Something else to deal with.

With my recent fatigue due to Fibro/CFS, I've had no choice but to sit through an entire movie while the housework piles up. I've taken to falling asleep at the drop of a hat and have had to stop driving unless I have no other transportation, but running off the road scared me so badly that I knew something had to be done so I visited my doctor and inquired about Provigil, a medication used for narcolepsy. I've been taking it for about three days now and have noticed some improvement with the fatigue and with concentration/memory, but now I'm concerned about the problems it might cause with the WED. From what I read, I don't know if it's going to be a positive or a negative. Maybe someone here can help? This is what I read that has me confused: "Modafinil seems to inhibit the reuptake action of the dopamine transporter, thus leading to an increase in extracellular and thus synaptic concentrations of dopamine." Since I also take a very small dose of Mirapex for the WED/RLS, how are these two medications going to interact? With all the medical jargon in the article, I'm a bit over my head and can't figure it out. On the plus side, I'm more active but not to the point of running around like a chicken with it's head cut off like before, but today my WED kicked in a little earlier than usual. I'm hoping that isn't a sign of things to come. I've decided to journal my daily actions/reactions to see if there's a correlation to the Provigil and the earlier start of the WED.

ViewsAskew
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Re: RLS and ADHD

Post by ViewsAskew »

Modafinil doesn't worsen WED. YAY! I take it sometimes (though my insurance company has recently refused to cover it - I can pay for it, of course).
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.

wyldaeval
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Re: RLS and ADHD

Post by wyldaeval »

ViewsAskew wrote:Modafinil doesn't worsen WED. YAY! I take it sometimes (though my insurance company has recently refused to cover it - I can pay for it, of course).

Thank you! That's good to know. May I ask what dose you take? My GP thought I should try an antipsychotic for sleep, Seroquel, a few months ago. I tried one and the next day I was all dopey and couldn't stay awake or think straight, so I'm staying away from that. With all the other medications I have to be on, I'm tired of the "lets try this, lets try that". Neurontin caused so much dizziness, I walked into the walls. That was a no go. Melatonin has seemed to help, but only at the 5mg dosage. Any more and I feel dopey. The Modafinil seems to help, to a degree. I did notice it's been easier to concentrate and not get too distracted by my surroundings and I've finally been able to get some housework done. It might be the start to getting my life back. I take it early in the day, and tonight I was able to go to sleep by midnight. I'd still be asleep if it weren't for the dogs barking at something. (Where's that emoticon banging his head against the brick wall when you need him! :roll: ) Going to see if I can get back to sleep. Hopefully, the Mirapex (.5mg) hasn't worn off yet.

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