Restless Leg Syndrome, Narcolepsy, & P.A.N.D.A.S... .. .

[EmersonAilidh]

I've mentioned before on here that I've been experiencing Narcoleptic symptoms for a little over a year now. Only one full blown Catpalectic episode (the difference between Narcolepsy & Cataplexy is important), & that was in April of 2009. While sitting at my desk in English class I just passed out. We had a substitute that day & I'm not too terribly social in school, so no one really noticed until the bell rang & I hadn't moved. Had my first depersonalization episode when it took five students to shake me awake.

 

Besides that, I am just always tired. There's no exception. It's not uncommon at all for me to just.. Fall asleep without trying. I won't realize until I wake up/someone wakes me up that I even went to sleep. I have had multiple episodes of sleep paralysis, although I can't recall any in the past seven months or so, I experience hypnagogic hallucinations very frequently, & as mentioned in the previous paragraphy, I have experienced some episodes of depersonalization (as if my twitching wasn't scaring my teachers enough!). I know when I'm going to bed that I'm going to be out for twelve hours, which is why even now in the summer I try not to stay up any later than one AM. In the event that I'm woken up before the twelve hour mark (which can go as far as sixteen hours if left undisturbed), I'm basically in a stupor, disoriented with a headache so pounding that I can hardly focus on anything. This was especially difficult during school. School here starts at 7:15 AM. Which means waking up at 5:30 AM for me. Even if I were to come home & immediately do my homework, eat, shower, & all of that, there's just no way that I could be asleep by 5:30 or even 6:30! So I made up by sleeping through class. Each class at my school is an hour & a half long, & more often than not (unless I had a particular reason not to) you could find me sleeping through all of them. My teachers knew better than to wake me up, too. I can't even understand anything at all when I'm woken up. It's seriously like everyone is speaking an entirely different language I'm so tired sometimes. My speech class first semester of last year was my first period, when I was my absolute LEAST alert or awake. We had to write a journal entry over a topic first thing every morning. I found myself failing all of them because I would "daze off" all the time & write in what quite simply wasn't English. It would either be scribbles or just totally nonsensical. Now that it's summer, most days I'll sleep from one AM to one PM. I'm normally ready for a nap by 3, & most days I take one for about an hour. More than likely, I'll sleep for another two hours before actually going to bed. Most days it's from six to eight PM. It's so hard for me to convince people that I'm not just lazy. I CAN'T STAY AWAKE!!

 

However, consistently ONE night a month for the past few months, I can't sleep at all. No naps. No twelve hour rests. No sleep at all. Why? Because my legs HURT. This is one of those nights, hence the 6 AM post, haha. I'm just as exhausted as ever, typing is a chore & my eyelids are struggling, but for once, sleep just won't come my way.

 

Now, my Dad was diagnosed with Narcolepsy twenty years ago. There have been a few times where my sister & I have had to wake him up at the wheel his is so bad at times. But he was also diagnosed with a mixed sleep apnea ten years ago. I wasn't even aware that these conditions could coexist.. He was hospitalized twentyfour times last year for complications with the two. I'm fairly confident that apnea has nothing to do with my situation though. I've heard how my Dad wakes up, it's anything but quiet, & when I used to live with my bestfriend we shared a bed & she never heard anything like that. Just my nightly enthusiastic sleeptalking & sleepwalking, hahaha. I had an EEG in November to test for seizures in my sleep that showed "abnormal brain activity" that wasn't Epilepsy (Again. I could have told you that. Shared a bed with someone for months.. Think they would have noticed seizures). Of course, it was then that my insurance gave out & I wasn't able to visit my neurologist until this May. At that visit, he scheduled me for a series of tests IN FEBRUARY. NINE MONTHS AWAY. I told him to forget it. So, I haven't yet gotten to be tested for Narcolepsy, even though there's not a doubt in my mind, & I don't think there's a test for RLS anyway.

 

On the other hand, my Mom, Grandma, & two of my uncles have Restless Leg Syndrome, which I know is hereditary. I know what I'm feeling on nights like this fits the description of RLS, & my Mom has even given me a dose of her Ropinirole before that helped immensely. My question is... How can this be?? How can I be experiencing one thing that won't let me stay awake, & one thing that won't let me sleep?? & also, does anyone know if there's a connection between RLS & P.A.N.D.A.S.? I am perplexed right now, in all honesty.

[Stephanie2]

We have a strong family history of pandas (both of my boys, and I suspect my neices and my cousin's son, have it) and also of RLS...who knows maybe there is a connection.

 

I will say this. I have RLS. It got very bad when I was pregnant. However, since I have treated my low iron levels it is basically gone unless I go a few days without my supplements. Maybe you should go see an alternative/integrative medicine doctor (a reputable one) and have a ton of bloodwork done. That has done wonders for my health overall...

 

Stephanie

I've mentioned before on here that I've been experiencing Narcoleptic symptoms for a little over a year now. Only one full blown Catpalectic episode (the difference between Narcolepsy & Cataplexy is important), & that was in April of 2009. While sitting at my desk in English class I just passed out. We had a substitute that day & I'm not too terribly social in school, so no one really noticed until the bell rang & I hadn't moved. Had my first depersonalization episode when it took five students to shake me awake.

 

Besides that, I am just always tired. There's no exception. It's not uncommon at all for me to just.. Fall asleep without trying. I won't realize until I wake up/someone wakes me up that I even went to sleep. I have had multiple episodes of sleep paralysis, although I can't recall any in the past seven months or so, I experience hypnagogic hallucinations very frequently, & as mentioned in the previous paragraphy, I have experienced some episodes of depersonalization (as if my twitching wasn't scaring my teachers enough!). I know when I'm going to bed that I'm going to be out for twelve hours, which is why even now in the summer I try not to stay up any later than one AM. In the event that I'm woken up before the twelve hour mark (which can go as far as sixteen hours if left undisturbed), I'm basically in a stupor, disoriented with a headache so pounding that I can hardly focus on anything. This was especially difficult during school. School here starts at 7:15 AM. Which means waking up at 5:30 AM for me. Even if I were to come home & immediately do my homework, eat, shower, & all of that, there's just no way that I could be asleep by 5:30 or even 6:30! So I made up by sleeping through class. Each class at my school is an hour & a half long, & more often than not (unless I had a particular reason not to) you could find me sleeping through all of them. My teachers knew better than to wake me up, too. I can't even understand anything at all when I'm woken up. It's seriously like everyone is speaking an entirely different language I'm so tired sometimes. My speech class first semester of last year was my first period, when I was my absolute LEAST alert or awake. We had to write a journal entry over a topic first thing every morning. I found myself failing all of them because I would "daze off" all the time & write in what quite simply wasn't English. It would either be scribbles or just totally nonsensical. Now that it's summer, most days I'll sleep from one AM to one PM. I'm normally ready for a nap by 3, & most days I take one for about an hour. More than likely, I'll sleep for another two hours before actually going to bed. Most days it's from six to eight PM. It's so hard for me to convince people that I'm not just lazy. I CAN'T STAY AWAKE!!

 

However, consistently ONE night a month for the past few months, I can't sleep at all. No naps. No twelve hour rests. No sleep at all. Why? Because my legs HURT. This is one of those nights, hence the 6 AM post, haha. I'm just as exhausted as ever, typing is a chore & my eyelids are struggling, but for once, sleep just won't come my way.

 

Now, my Dad was diagnosed with Narcolepsy twenty years ago. There have been a few times where my sister & I have had to wake him up at the wheel his is so bad at times. But he was also diagnosed with a mixed sleep apnea ten years ago. I wasn't even aware that these conditions could coexist.. He was hospitalized twentyfour times last year for complications with the two. I'm fairly confident that apnea has nothing to do with my situation though. I've heard how my Dad wakes up, it's anything but quiet, & when I used to live with my bestfriend we shared a bed & she never heard anything like that. Just my nightly enthusiastic sleeptalking & sleepwalking, hahaha. I had an EEG in November to test for seizures in my sleep that showed "abnormal brain activity" that wasn't Epilepsy (Again. I could have told you that. Shared a bed with someone for months.. Think they would have noticed seizures). Of course, it was then that my insurance gave out & I wasn't able to visit my neurologist until this May. At that visit, he scheduled me for a series of tests IN FEBRUARY. NINE MONTHS AWAY. I told him to forget it. So, I haven't yet gotten to be tested for Narcolepsy, even though there's not a doubt in my mind, & I don't think there's a test for RLS anyway.

 

On the other hand, my Mom, Grandma, & two of my uncles have Restless Leg Syndrome, which I know is hereditary. I know what I'm feeling on nights like this fits the description of RLS, & my Mom has even given me a dose of her Ropinirole before that helped immensely. My question is... How can this be?? How can I be experiencing one thing that won't let me stay awake, & one thing that won't let me sleep?? & also, does anyone know if there's a connection between RLS & P.A.N.D.A.S.? I am perplexed right now, in all honesty.

[emmalily]

Do you notice that the RLS-night happens at the same point in your cycle each month? I had seriously pain in my legs about 7-10 days before my period for awhile. It would only last for about 24 hours. It went away with time (I think I was still healing from the latest exacerbation). Definitely could be hormonal, if iron supplements helped Stephanie. Are you anemic?

[MomWithOCDSon]

These is a strep/narcolepsy connection. Apparently, while there is a gene associated with narcolepsy, they've also found that people who experience narcolepsy tend to have higher strep titers than the general population.

 

Our DS13 also experiences some narcoleptic behaviors, especially when under extreme stress; he will feel an overwhelming desire to sleep (what the narcolepsy community refers to as Extreme Daytime Sleepiness or EDS), though there have been no instances of cataplexy as of yet. My understanding, however, is that the cataplectic end of the illness comes later.

 

Here's a link to the research paper on the topic.

 

Elevated Strep Titers and Narcolepsy

[thereishope]

If you look at our morning voting list for Pepsi, we support Narcolepsy Immuno Chip Research. They have even said that at Stanford (where their research is based out of) a good number of narcolepsy patients had a strep infection within a year of their first onset of narcolepsy.

 

On their Pepsi write up, they say their research may also help autism, bipolar, etc.

Edited June 26, 2010 by Vickie

[EmersonAilidh]

Do you notice that the RLS-night happens at the same point in your cycle each month? I had seriously pain in my legs about 7-10 days before my period for awhile. It would only last for about 24 hours. It went away with time (I think I was still healing from the latest exacerbation). Definitely could be hormonal, if iron supplements helped Stephanie. Are you anemic?

I am anemic, as a matter of fact. I used to take Feosol supplements (can't remember the dose) but with the Narcolepsy symptoms keeping me fatigued anyway I didn't see much point & stopped. I really can't remember what day it happened last month, but now that I know it was on the 25th/26th (depending on how you look at it) I'll keep a look out next month.

 

I will say this. I have RLS. It got very bad when I was pregnant. However, since I have treated my low iron levels it is basically gone unless I go a few days without my supplements. Maybe you should go see an alternative/integrative medicine doctor (a reputable one) and have a ton of bloodwork done. That has done wonders for my health overall...

 

With how rarely it happens I can't really say whether or not iron supplements made a difference when I was taking them. Over the years I can't even recall how much blood I've had drawn, but I've never seen an alternative/integrative medicine doctor. What do they do, exactly??

 

These is a strep/narcolepsy connection. Apparently, while there is a gene associated with narcolepsy, they've also found that people who experience narcolepsy tend to have higher strep titers than the general population.

 

I read the Stanford paper a week or two back & needless to say, I was very pleased. I hope your son feels better! My cataplectic episode was my first symptom, actually. I hope your son never has one though!

 

 

 

 

 

My main question is really just, is there a way that Narcolepsy & RLS could both be found in one person??

[sptcmom]

There appears to be a low ferritin/iron connec tion with Pandas. Low iron can cause RLS, muscle spasms, " growing pains". I don't know of a narcolepsy connection though. I just read the earlier posts about the strep connection. Very interesting.

BUT Dr K says iron supplements are contraindicated in Pandas patients as they cause incresed susceptibility to infections. He suggests we try to give DS a high iron diet instead with all the iron absorption precautions like not too much calcium, not too many carrots , vit C with high iron meal. DS is doing well. No more RLS for a while now.

Edited June 26, 2010 by sptcmom

[EmersonAilidh]

There appears to be a low ferritin/iron connec tion with Pandas. Low iron can cause RLS, muscle spasms, " growing pains". I don't know of a narcolepsy connection though. I just read the earlier posts about the strep connection. Very interesting.

BUT Dr K says iron supplements are contraindicated in Pandas patients as they cause incresed susceptibility to infections. He suggests we try to give DS a high iron diet instead with all the iron absorption precautions like not too much calcium, not too many carrots , vit C with high iron meal. DS is doing well. No more RLS for a while now.

 

I'm happy to hear your son's doing well!

I don't think I take in much iron at all, actually. I'm vegetarian & gluten-free. How do you make sure your son gets enough??

[sptcmom]

There appears to be a low ferritin/iron connec tion with Pandas. Low iron can cause RLS, muscle spasms, " growing pains". I don't know of a narcolepsy connection though. I just read the earlier posts about the strep connection. Very interesting.

BUT Dr K says iron supplements are contraindicated in Pandas patients as they cause incresed susceptibility to infections. He suggests we try to give DS a high iron diet instead with all the iron absorption precautions like not too much calcium, not too many carrots , vit C with high iron meal. DS is doing well. No more RLS for a while now.

 

I'm happy to hear your son's doing well!

I don't think I take in much iron at all, actually. I'm vegetarian & gluten-free. How do you make sure your son gets enough??

Thanks. We're still fighting Pandas at 5 weeks post IVIG but the leg and muscle symptoms are better thank the Lord....

Just high iron diet- enriched bread, pastas, cereals, lentils, beans, tuna, salmon, eggs, oysters, liver, beef, turkey, etc. Also eat high Vit C with high iron foods. Avoid calcium and vit A with high iron foods.

I am vegan actually and my iron is fine due to lentils, beans, lots of citrus and enriched foods.

Edited June 26, 2010 by sptcmom

[Stephanie2]

An integrative medicine doctor does bloodwork/urine/stool, whatever, to try to get to the root cause of chronic illness. They test for things that a traditional MD would not. For example, here are the things that my MD found: (almost) anemic, low magnesium, low CoQ10, low DHEA, low testosterone, low progesterone, borderline thyroid issues, high blood sugar. They also interpret the lab results differently than a regular MD. For example, I was not "officially" anemic or diabetic by Quest Labs reference range, but he said I was close and that I would not feel better until we got the iron way up and the blood sugar way down. Most MD's would look and see that I was "within range" and would blow most of it off.

 

I feel so much better since having these things corrected. I no longer have the severe allergies I used to struggle with, I no longer have asthma (flares maybe 3 days per year instead of daily), and I no longer have severe PMS, I no longer get sick EVERY time the kids get sick, etc...Oh, and I manage stress SOOOO much better than before!

 

And to give you an uneducated answer to your question: I don't see why you can't have narcolepsy and RLS. RLS usually occurs at night and narcolepsy usually occurs during the day, right? Just a guess...

 

Stephanie

Edited June 27, 2010 by Stephanie2

[EmersonAilidh]

Just high iron diet- enriched bread, pastas, cereals, lentils, beans, tuna, salmon, eggs, oysters, liver, beef, turkey, etc. Also eat high Vit C with high iron foods. Avoid calcium and vit A with high iron foods

I can only eat lentils, beans, & eggs out of those, but I need those for protein anyway so I'll be sure to eat more of them!

 

An integrative medicine doctor does bloodwork/urine/stool, whatever, to try to get to the root cause of chronic illness. They test for things that a traditional MD would not. For example, here are the things that my MD found: (almost) anemic, low magnesium, low CoQ10, low DHEA, low testosterone, low progesterone, borderline thyroid issues, high blood sugar. They also interpret the lab results differently than a regular MD.

 

I'll look into those around my area! That sounds interesting. & I'm glad to hear that you're feeling better!

& the day & night thing makes sense! I hadn't thought of it like that before. Then again, this is P.A.N.D.A.S. we're dealing with here so I suppose nothing really has to make sense, hahah. Best of wishes to you & your kids!

[EmersonAilidh]

Finally made a connection!

 

Read on here that RLS can be triggered by an iron deficiency. It runs in my family & I'm anemic. I think I only experience it when I'm menstruating since I have even less iron than usual. Past two months support my little theory.

[Suzan]

http://www.candidafree.net/

 

RLS can also be a sign of Candida so I thought I'd post this list of symptoms in case that is helpful.

 

Susan

[Suzan]

Oh, are you gluten free? If so, maybe this will help if it's your iron stores that are a problem. If you did have Celiac, this can deplete your iron and could be causing (or making worse) the RLS.

 

Susan

Edited June 28, 2010 by Suzan

[EmersonAilidh]

Suzan - Yes, I am gluten free but I don't have Celiac's. I'm hoping to see a gastroentonolgist soon. In all honesty my abdominal pain symptoms sound a bit like Chron's but I'm hoping for something less severe.

& all of those symptoms are really, really widespread. A lot of them apply to me but a lot of them don't at the same time. Is there a test for Candida??