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#341 Ferret

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Posted 25 June 2015 - 11:16 PM

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Read this please...http://www.psychiatr...-sleep/page/0/1

The above chart is from the link.

Do NOT feel ashamed! However, your Doctor might want to feel ashamed after she reads the article. Fluoxetine is an SSRI and it most certainly DOES suppress REM and increase REM latency.

The above is just ONE article...google "does Fluoxetine suppress REM" and you'll find pages and pages of information.

Stand firm! Your money, your time and your life...take charge.



#342 everythingthatshimmers

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Posted 26 June 2015 - 12:51 AM

IMO, you are pathologically sleepy or else you wouldn't be able to sleep for four consecutive naps. And six minutes is a fairly short latency. Sounds like IH to me with the sleep latency, no SOREMS, and long naps but I'm certainly no expert.

The main reason I'm replying is because of the visual disturbance you mentioned--my eyes also lose focus at random times. I've mentioned it to two different sleep doctors and they acted like they had never heard of it. Like you, my vision checks out fine during my annual exams. I would think it must be a CNS issue since it's transient. I was advised to get tested for diabetes--been there, done that, blood glucose was fine.

#343 Monstreline

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Posted 26 June 2015 - 07:41 PM


Read this please...http://www.psychiatr...-sleep/page/0/1
The above chart is from the link.
Do NOT feel ashamed! However, your Doctor might want to feel ashamed after she reads the article. Fluoxetine is an SSRI and it most certainly DOES suppress REM and increase REM latency.
The above is just ONE article...google "does Fluoxetine suppress REM" and you'll find pages and pages of information.
Stand firm! Your money, your time and your life...take charge.


Thanks Ferret, for the support AND the great link.

I have a follow-up appointment in a month, for the doc to assess how effective the Ritalin is. I've decided to stop my meds and continue with the sleep diary until my next appointment.

And before everyone gets worried when I talk about stopping meds, the fluoxetine isn't an issue, I've tapered off of it before with my doctor and pharmacist's help, I'll have the pharmacist compound to the same specifications. And as for my chronic pain meds, they don't help as much as they used to anyway. They don't have any withdrawal symptoms so no worries there, and the doc believes that they could be causing the EDS. So I'm going to take a few months to get a baseline.

I'll continue with the sleep diaries and see how it all goes.

Thanks again!

#344 Monstreline

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Posted 26 June 2015 - 07:43 PM

IMO, you are pathologically sleepy or else you wouldn't be able to sleep for four consecutive naps. And six minutes is a fairly short latency. Sounds like IH to me with the sleep latency, no SOREMS, and long naps but I'm certainly no expert.

The main reason I'm replying is because of the visual disturbance you mentioned--my eyes also lose focus at random times. I've mentioned it to two different sleep doctors and they acted like they had never heard of it. Like you, my vision checks out fine during my annual exams. I would think it must be a CNS issue since it's transient. I was advised to get tested for diabetes--been there, done that, blood glucose was fine.


Ha! I can totally relate; some years I've gone back for multiple eye tests because I was certain they missed something.

The eye thing is really weird and frustrating!

#345 Paulette79

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Posted 29 June 2015 - 12:33 PM

If it is possible, you may want to repeat the daytime test without any meds, I know that may mean weaning from the Prozac but it may be worth it to get a reliable and perhaps more definitive result. Also, could the antidepressant be causing the EDS? Just some thoughts...

#346 purpley

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Posted 09 July 2015 - 10:28 AM

Excuse me, I don't often call my colleagues ignorant, but in this case, your doctor's completely ignorant.  Fluoxetine and other SSRIs absolutely, positively suppress REM!  In fact, not only do they decrease the total amount of REM sleep, they increase REM latency -- and rapid-onset REM is very thing you're looking for on an MSLT.

 

There's no way to say that an MSLT rules out narcolepsy while a person is on the maximum dose of fluoxetine.  Fortunately for you, at least she recognizes the EDS and you're going to have a trial of Ritalin.  But really, what is it with these sleep docs???

 

Thanks Sleepingmonkey!

I got my results today. No Dx. My mean sleep latency was 6.77 min and I had no SOREMPs. I asked the doctor if the lack of SOREMPs could be related to my taking a maximum daily dose of fluoxetine for over a year, but she said no. I also asked if my issues focusing my eyes could be related to my sleep issues and she said that I should see an ophthalmologist as it was very unlikely that the trouble that I have with my eyes, going out of focus, could be related to a sleep disorder. That it was more likely caused by my anti-depressant or my meds for chronic pain. My eyes have been sliding out of focus for a lot longer than I have taken any medications, it started before I hit my teens.

The treatment is Ritalin for moderate EDS based on my mean sleep latency. We'll see how it goes. I'd like to be able to have a bit more energy in the afternoons, to get more done, rather than slinking off for two to three hour long naps.

I feel ashamed. I'm young, and I seem to have all these complaints...chronic back pain, with no medically identifiable cause, sleepiness that isn't narcolepsy or anything else. Maybe I'm just a whiner. Whenever I leave a doctor's office I always feel as though they must think that I imagine these things.



#347 Monstreline

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Posted 10 July 2015 - 09:38 PM

If it is possible, you may want to repeat the daytime test without any meds, I know that may mean weaning from the Prozac but it may be worth it to get a reliable and perhaps more definitive result. Also, could the antidepressant be causing the EDS? Just some thoughts...


I'm on the same page; I discontinued my Celebrex and Lyrica (to see if they're causing the EDS) and am tapering off my Fluoxetine in case I get another shot at an MSLT.

It's highly unlikely that another MSLT will be performed however, unless there is a significant change in my symptoms as I live in Ontario where the test is covered by provincial health care.

#348 Monstreline

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Posted 10 July 2015 - 10:11 PM

Excuse me, I don't often call my colleagues ignorant, but in this case, your doctor's completely ignorant. Fluoxetine and other SSRIs absolutely, positively suppress REM! In fact, not only do they decrease the total amount of REM sleep, they increase REM latency -- and rapid-onset REM is very thing you're looking for on an MSLT.

There's no way to say that an MSLT rules out narcolepsy while a person is on the maximum dose of fluoxetine. Fortunately for you, at least she recognizes the EDS and you're going to have a trial of Ritalin. But really, what is it with these sleep docs???


Thanks Purpley,

I'm uncertain if there is any value in spending my time chasing a Dx if I will still be able to get treated for EDS.

So far the Ritalin keeps me awake but also makes my heart POUND! The pounding continues long after the energy has worn of so I end up sleepy, but unable to sleep.

I'm going to try taking some magnesium citrate tomorrow to see if it help with the heart pounding.

#349 purpley

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Posted 13 July 2015 - 09:54 AM

Thanks Purpley,

I'm uncertain if there is any value in spending my time chasing a Dx if I will still be able to get treated for EDS.

So far the Ritalin keeps me awake but also makes my heart POUND! The pounding continues long after the energy has worn of so I end up sleepy, but unable to sleep.

I'm going to try taking some magnesium citrate tomorrow to see if it help with the heart pounding.

 

I agree, chasing the diagnosis isn't too important as long as you're getting treatment.  Meanwhile, try dividing up the Ritalin into smaller doses -- like a half pill every 2-3 hours instead of two full pills 6 hours apart or however you have it scheduled.  Plus avoid caffeine!

 

The real solution will be a longer-acting formula (or a change to a different stimulant, like Adderall), but dividing up the dose like I suggest above will be almost the same, just a lot more work.



#350 sleepingmonkey

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Posted 13 July 2015 - 01:37 PM

So far the Ritalin keeps me awake but also makes my heart POUND! The pounding continues long after the energy has worn of so I end up sleepy, but unable to sleep.

 

Same thing happened to me with Adderall. I currently split my 10mg dose and space them out 2-3 hours like Purpley said. I don't always take the second dose. This eliminates the jitters for me!



#351 Monstreline

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Posted 20 July 2015 - 12:39 PM

Thanks to everyone for all of the great tips and information!

Something occurred to me in my sleep/wake last night;
In my follow-up appointment, while my sleep doc was reviewing my results with me, she noted that I had not experienced any 'microsleeps' between the sanctioned naps.

However, each time the technician came into the room to wake me up, she also disconnected the lead wires from the box on the beside table, that transferred the information to their computers.

Wouldn't that mean that if I had experienced any episodes of microsleep between naps, that they would not appear in the results?

IMO, you are pathologically sleepy or else you wouldn't be able to sleep for four consecutive naps. And six minutes is a fairly short latency. Sounds like IH to me with the sleep latency, no SOREMS, and long naps but I'm certainly no expert.

The main reason I'm replying is because of the visual disturbance you mentioned--my eyes also lose focus at random times. I've mentioned it to two different sleep doctors and they acted like they had never heard of it. Like you, my vision checks out fine during my annual exams. I would think it must be a CNS issue since it's transient. I was advised to get tested for diabetes--been there, done that, blood glucose was fine.

 
 

If it is possible, you may want to repeat the daytime test without any meds, I know that may mean weaning from the Prozac but it may be worth it to get a reliable and perhaps more definitive result. Also, could the antidepressant be causing the EDS? Just some thoughts...

 
 

Excuse me, I don't often call my colleagues ignorant, but in this case, your doctor's completely ignorant.  Fluoxetine and other SSRIs absolutely, positively suppress REM!  In fact, not only do they decrease the total amount of REM sleep, they increase REM latency -- and rapid-onset REM is very thing you're looking for on an MSLT.
 
There's no way to say that an MSLT rules out narcolepsy while a person is on the maximum dose of fluoxetine.  Fortunately for you, at least she recognizes the EDS and you're going to have a trial of Ritalin.  But really, what is it with these sleep docs???

 
 

Same thing happened to me with Adderall. I currently split my 10mg dose and space them out 2-3 hours like Purpley said. I don't always take the second dose. This eliminates the jitters for me!



#352 Jai

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Posted 27 July 2015 - 01:29 AM

If your un hooked how would they know if you had a micro sleep. (I was unhooked between naps too)

#353 Sleepyturtle

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Posted 28 July 2015 - 06:57 PM

Hi, I'm Tori and I am a PWN/wC. I was diagnosed August 2014. I first started not feeling well when it was my sophomore year of high school 2012. I was so exhausted all the time and sleeping was all that I wanted to do. I went to numerous doctors and specialists and a majority of them thought I was just crazy and that it was all in my head. The doctors would tell my mom since I am a teenager that she just needs to take me home and parent me because I am making it up. My mom is my hero through the past 3 years. She fought doctors because she knew something wasn't right. The last primary care doctor I tried is a pediatrician. He studied my chart for about a week before I came in to meet him for the first time. Once, I met him he looked at me and said my guess is Tori that you have Narcolepsy. After that, I got a sleep study done and sure enough he was right! For the past year now I have been trying to learn how to cope and deal with Narcolepsy. It is definitely not easy to deal with. I will be starting college soon and having this diagnosis and the right treatment for me is a huge stress relief. The college has given me many accommodations to help me out. 



#354 Wonderfulworld

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Posted 18 December 2015 - 04:06 AM

Hi, I'm Maria, I'm 26 and I got diagnosed a couple months ago after about 14 years of having N.

 

My journey to this diagnosis was long.

 

It started with sudden sleepiness in class. It was so overwhelming that I didn't want to stop myself. I also had som small seizures (partial epileptic seizures I now know) which means I started missing a lot of information and my teachers gave me a hard time because they thought I simply wasn't paying attention.

 

4 years later the cataplexy started when I was frustrated, stressed out or competing and sometimes what seemed to be for no reason. At the same time I experienced sleep paralysis with hearing hallucinations. Usually footsteps, opening of doors or people talking.

 

I thought I was crazy!

 

2 years later I consulted my doctor. I didn't say anything about the sleep paralysis or hallucinations (because of the feeling of shame) but the sleepiness, lack of concentration, moodiness etc. made my doc believe it was depression.

 

After the first meeting (about half an hour) with a psychiatrist I was diagnosed with fear psychosis. Even without talking about the hallucinations. Years later that psychiatrist lost his license because of many years of misdiagnosing patients and making their lives miserable.

 

I was one of them.

 

On Abilify for over half a year. I was a living zombie, literally couldn't recall the feeling of joy, constantly wanting to end my life, suddenly afraid of a lot of things I was never afraid of before, more sleepy than ever. I experienced several partial seizures every single day and sleep paralysis several times every single night where before there used to be days between them.

 

I obviously didn't end my life and 2 years after the "treatment" I was almost back to normal. It feels like it took a small part of me I will never get back.

 

My life went on but I often failed to attent work, felt sleepy and simply lost all motivation. Well, at least I had my cataplexy under control.

 

I managed to finish a year of school after my work year ended. Then I got some kind of infection and didn't finish my second year (something similar to senior high I guess - I'm from a different country). I gave up because of severe muscle weakness, joint pain and a terrible cough.

 

I had swollen lymph nodes so my body was definitely fighting something.

 

Thanks to my experience with the psychiatrist mixed with the confusing symptoms of N and E, the doctors wanted me to immediately go to a clinic that treated people with health anxiety. Bacause I had "too many" symptoms they brushed them off as something I provoked.

 

For the first time I told my doctor about not being able to move my body when I woke up. The doctor's answer? "Get a better alarm clock".

 

Before going to that clinic I got better. The infection "thing" finally lost its grip on me and I decided not to go there. I had also had a really bad feeling about it.

 

I was now 22 and a friend of mine became more than a friend, we got married and moved away together. To a new doctor.

 

I had kind of accepted my condition as just being a part of who I am but my husband failed to understand me. I also had no driver license and I would probably need that soon why we went to see my new doctor. We had started talking about epilepsy as a possibility.

 

It was strange for me to experience talking to a doctor who actually believed me.

 

Unfortunately the first neurologist she referred me to said I was psychotic when I told him about the sleep paralysis. Off cause he had read my files. I didn't feel psychotic and none of my friends or family thought I was. He did diagnose me with classic migraines though. He then referred me to a different neurologist who knew more about epilepsy. In this neurologist's opinion I "had a lot". She sent me such an unpleasant smile. One that revealed that she didn't take me seriously at all.

 

Finally, when I was 23, she referred me to some experts on epilepsy. They turned out to also be experts on sleeping disorders.

 

For them epilepsy was an obvios reason for my symptoms and I got diagnosed at age 24 but they also suspected narcolepsy (which I knew very little about - "hey isn't that something where you suddenly fall asleep without warning??"). It turned out E was only a small part of it and most of my struggle was caused by N. After different tests and a lot of waiting I now, age 26, finally have the diagnosis narcolepsy and epilepsy.

 

Today my E is almost under control with medication, my knowlegde of N makes my "dream experiences" more bearable , I attend school online which makes it easier and less stressful, my husband and I have the perfect dream house and two little girls, people around me don't judge me anymore because they know what is wrong and all that I need now is a driver license.

 

Well, after all that I've been through I think the world is pretty wonderful now!