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Any Other Diseases That Mimic Narcolepsy?


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#1 cremesoda34

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Posted 06 July 2013 - 07:51 AM

I am newly diagnosed with narcolepsy,

 

I have searched for more info as most people do to try and understand. I was wondering if anyone knows of any other diseases that mimic narcolepsy and give the same results of a positive MSLT test? I am just trying to figure out how this narcolepsy can come along in strong waves of symptoms for a few weeks then not so bad for a while then flare back up. Is that normal as I still don't know much about this disease.  I was just diagnosed on july 1st 2013. This is very new to me. 



#2 Hank

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Posted 06 July 2013 - 12:25 PM

There are other things that can mimic Narcolepsy, like Sleep Apnea and Sleep Deprivation. If you made it through your PSG and hit REM in your MSLT, the other things have been ruled out.

The N diagnosis is very objective - 2 SOREM. It is a hard diagnosis to qualify for. Unless there is information you have not mentioned, you have Narcolepsy. Welcome to the club.

From my perspective, it was harder to live with it when I had no answers. It is no fun, but it is not the end of the world for me now. I was devastated at first and very confused by the unknown. Now, I live my life and manage my symptoms and give myself a lot of latitude.

It does come in waves for me. Beginning last week, it has been hard to me to fall asleep at night. This seems to happen whenever I hit a stressful patch. That makes the next day harder for me, and a viscious cycle can begin if I am not very careful.

Some things make it better and a lot of things make it worse. The trick seems to be finding these out for yourself. Other people's experiences have been very helpful for me sorting this out. Be easy on yourself as you learn- just observe how you feel - good or bad- and ask yourself what preceded that. You will begin seeing patterns and then you can capitalize on the good patterns and try to eliminate the bad ones.

#3 Janel

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Posted 06 July 2013 - 02:58 PM

Adrenal Fatigue may actually be a cause for narcolepsy.  I was diagnosed with narcolepsy a few months ago.  I actually went to a foot reflexologist and got my vitamin levels checked.  I am taking like a B6 and some other vitamins which have helped me tremendously.  No problems driving anymore either.  Food sensitivities maybe even could be a culprit.



#4 Hank

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Posted 06 July 2013 - 07:33 PM

Adrenal Fatigue may actually be a cause for narcolepsy.  I was diagnosed with narcolepsy a few months ago.  I actually went to a foot reflexologist and got my vitamin levels checked.  I am taking like a B6 and some other vitamins which have helped me tremendously.  No problems driving anymore either.  Food sensitivities maybe even could be a culprit.


I thought Narcolepsy was caused by the destruction of Orexin/Hypocretin cells by the immune system. How is this related to adrenal fatigue? How were you diagnosed and by whom?

#5 sk8aplexy

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Posted 06 July 2013 - 07:49 PM

For me, both Parkinsons and MS had to be ruled out with an MRI of my brain, by a neurologist who saw me first.  Then the Minimal Idiopathic Central Sleep Apnea appeared at the first Polysomnography (MSLT was supposed to happen), and for 9 months I went through hell (the worst period of my life) before reaching my diagnosis.  Over that 9 months, I was on sleep breathing devices which directly somehow escalated my Cataplexy super dramatically (that being the hell, I mention above).  Due to the 'not being listened to nor heard as I told her things were only getting much much worse,' eventually becoming beyond discouraged, let down, harmed and beyond frustrated by this, I sought help at Mayo Clinic. 

There, I was heard and had a few good thorough discussions (with Neurologist and Sleep Specialist, as well as an ENT -however I didn't then, know of the histamine link which today, I'd dive into discussing) were had.  A Polysomnography which showed my Idiopathic Central Sleep Apnea had worsened to Moderate, wearing an actigraphy wrist band for 10 days prior to the MSLT, along with re-reading of my brain MRI scan, was all done as well...

 

I've read that both MS and Parkinsons involve, at times, many of the same symptoms and/or the appearance of the same symptoms, as those of Narcolepsy with Cataplexy.



#6 cremesoda34

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Posted 07 July 2013 - 07:05 PM

Ok I am so new to this I have to ask what is SOREM ?  Here is all the results from my MSLT.   

 

nap 1 : latency 4 minutes REM present

nap2 : latency 6 minutes REM present

nap 3 : latency 5 minutes REM present

nap 4: latency 7 minutes REM present.

 

Mean sleep latency is 6 minutes with REM present in all four naps.

 

Positive for narcolepsy. 

 

I had a polysomnography almost two years ago and was diagnosed with severe RLS and have been on requip xl 6mg since and I just had another with the MSLT the following day last month and just got my results. I want to ad that They even had me take my requip with this test. 



#7 sk8aplexy

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Posted 07 July 2013 - 08:28 PM

SOREMPs = sleep-onset Rapid Eye Movement periods.

These should not occur in a typical persons, short daytime nap, usually taking over an hour to reach one (some hypersomniacs will have them in shorter naps though). 



#8 DeathRabbit

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Posted 09 July 2013 - 10:13 AM

Any person with EDS can have SOREMs. It's narcolepsy if they can't find any other reason (apneas, diseases, other neurological disorders, etc) . But yes, even a healthy person, if they build up a large sleep debt, their sleep patterns begin to resemble a narcoleptic's.

 

@Hank- I think some people consider it secondary narcolepsy if you have problems like I mentioned above that give you a narcoleptic sleep architecture. It's just a semantic issue I believe. So in the case of sleep apnea, one would say, I suppose, I have narcolepsy secondary to sleep apnea. In that case, narcolepsy is just the mashed potatoes that came with your steak.



#9 sk8aplexy

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Posted 09 July 2013 - 10:28 AM

Agree with you DeathRabbit, regarding secondary...

I'd asked Dr. Mignot at a event discussion, directly and specifically about such.

And his response was more or less, along the following lines.

If you are experiencing clear cut Cataplexy, then you've basically got full blown Narcolepsy as the Hypocretin is lost, which means it's unlikely to be resolved; however, there are cases of things working themselves out on their own, were perhaps no sense can be (or has been) made of how it resolved itself. 



#10 Hank

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Posted 09 July 2013 - 12:30 PM

Any person with EDS can have SOREMs. It's narcolepsy if they can't find any other reason (apneas, diseases, other neurological disorders, etc) . But yes, even a healthy person, if they build up a large sleep debt, their sleep patterns begin to resemble a narcoleptic's.
 
@Hank- I think some people consider it secondary narcolepsy if you have problems like I mentioned above that give you a narcoleptic sleep architecture. It's just a semantic issue I believe. So in the case of sleep apnea, one would say, I suppose, I have narcolepsy secondary to sleep apnea. In that case, narcolepsy is just the mashed potatoes that came with your steak.


Maybe so. I thought that secondary N was caused by brain lesions or head trauma.

I am just curious about who diagnosed Janel. I was unsure if she was saying that the Foot Reflexologist diagnosed her with Narcolepsy. This is unlikely to be the case. I have experienced alternative health practitioners overstepping their bounds, so I just thought I would clarify with Janel.

#11 cremesoda34

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Posted 10 July 2013 - 09:31 PM

I see now, I was curious if other disease mimic narcolepsy because I am new to this diagnosis and mine was diagnosed by by my neurologist through their sleep lab at heartland neurology carmel,Indiana. I see dr.cahn and have been for 3 years trying to figure out if I had ms or what was going on with me when   this diagnosis came from the mslt.

     I just seemed to get worse over the past year and never thought narcolepsy as most the time I sleep normal at night some nights are not that great but most seem normal. It's the daytime sleepiness with several naps needed ,very vivid dreams, and I don't take short naps . I can sleep for hours couple times a day and still go to bed early and sleep all night. I guess I thought narcolepsy was several short naps and not sleeping well at night. Yes I am still learning .  Maybe I was hoping it was another disease confused with narcolepsy.

         I have been dealing with severe muscle pain,leg weakness for years and have had the exhausted feeling with it. Foggy head feeling, memory issues and lots of vertigo . Just the other day ( friday) I  got kinda scared as I was with my husband at the grocery store and I started getting this weird flashing zig zag pattern in my left eye and it got bigger to the point it took up half my vision. I had no headache before or since. I called my neuro and he has me coming in monday. 

  Are these the normal symptoms of N? It seems like some might be but others are not or can N go along beside something else at the same time? I ramble and I am sorry just trying to figure this all out.  So reading the others response that MS or parkinsons  do share the same symptoms is that right? If so would they also give a postive on the mslt testing such as cause abnormal rem patterns?



#12 Ferret

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Posted 10 July 2013 - 10:10 PM

Everybody's Narcolepsy is not cookie cutter. Yes, MS and Parkinson's can share some of the same symptoms and even some MS patients do benefit from Provigil...yet some Narcoleptics don't.

I can fall asleep sitting still for more than five minutes...trips are a breeze 'cuz I sleep all the way there...and I sleep all night long. But, the actual quality of restorative sleep sucks....and I have Cataplexy.

Will you please post back after you see your Neuro on Monday? Sounds like he's a keeper to respond so promptly to your concerns. I also get the flashing zig zag pattern and was told by an Opthamologist (who thoroughly checked the retinas to make sure there was no damage) that it's simply that my eyes get tired too. I do have Glaucoma though and have been using timolol drops for 10 years...pressure in both eyes is managed perfectly. Still, I'd like to hear what your Neuro tells you.

Keep searching until you're satisfied with the answers, your meds and your well-being. Best of luck!

P.S. I assume that you have already read about the side effects of Requip...

http://www.drugs.com/requip.html

Requip may cause you to fall asleep during normal daytime activities such as working, talking, eating, or driving. You may fall asleep suddenly, even after feeling alert. Tell your doctor if you have any problems with daytime sleepiness or drowsiness.



#13 sk8aplexy

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Posted 11 July 2013 - 08:42 AM

Cremesoda34, what you describe sounds very similar to where I was, how I was, around when I began my seeking of help.  Glad you've found a doc in IN, that can help...

I'd for years been collapsing now and then from Cataplexy, but it had begun occurring with my friends and/or in public, as well as a list of other effects:

-staggered walk occasionally (like drunken walk).

-lots of real fatigue for years, all throughout my body (never realized I was tired, now 5 years later I experience the tiredness rather than so much fatigue, but I am much gentler on myself as well and don't overwork myself, like prior).

-a history of headaches and migraines, as well as ear infections and ear matters, sinuses/allergies - congestion (ENT surgeries), dental matters too...  (related somewhat perhaps to lack of quality sleep and the excess histamine - I presume).

-napping has never been something I could plan and/or do in short periods of time; now days I end up taking at least one, near each day, but that is only when I hop from my chair into bed as the sleep attack hits and they tend last 2-3 hours, it can be a battle to take the nap or not...

-as I've gotten a bit older, continually, it seems my sleep patterns change and unfortunately not necessarily in a better direction, as I'd always thought I was a great sleeper until I had a Polysomnography and then spent years trying to grasp understanding to/of the condition/disorder/disease (I also have minimal-moderate idiopathic central sleep apnea which I can not treat due to my ENT matters); reflecting and thinking back, hindsight, has helped tremendously in gauging and juggling (especially relating to Cataplexy).

-brain fog/cloud.  Diet has helped this and really all of the above, too.

Many lifestyle adjustments have brought me much benefit, meds have not helped me as they caused side effects which were far worse than the benefit/s, for me (each of us are different and effected in various ways by such, like the disease as well); it's taken years though and has not been easy to find the adjustments which work, and it's a continual juggle, on top of that I still experience all sorts of matters.

The best of luck to you.



#14 drago

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Posted 14 July 2013 - 01:46 PM

Do you have cataplexy?

 

I only ask because cataplexy is "the symptom" of narcolepsy. While not all people with narcolepsy have cataplexy, those with cataplexy are definitely narcoleptic.

 

If you're like me (dx: narcolepsy WITHOUT cataplexy) narcolepsy can be a secondary condition of a few thing:

--paraneoplastic syndrome (autoimmune response due to cancer)

--Multiple Scleorsis (MS)

--Parkinson's Disease

--Lupus

--a number of autoimmune disorders that could possibly trigger/cause narcolepsy to develop

--certain nutritional disorders (extreme) can also cause this

 

You might also want to look into the following:

--Hypothalamic Hamartoma

--endocrine disorders related to adrenal system

 

Depending on other symptoms you have (EDS? Sleep paralysis? etc.) There are some other factors, including cardiac issues (and circulatory system issues) and even somethign like insulin issues/diabetes.

 

The truth is, there are a number of things that can cause severe symptoms like EDS/sleep attacks, but they are either rare or likely-to-be diagnosed before EDS becomes a secondary issue.

 

If you're concerned that you don't have narcolepsy, or that your narcolepsy is triggered by something else, you should make a list of your known health issues. Do you get dizzy when you stand up to fast? Do you have very poor balance and coordination, no matter what you do? Skin conditions? etc. Sometimes a list like this can feel overwhelming, but if there is something wrong, your body is giving you signals. Sometimes they're difficult to figure out because you go to your doctor for insomnia or EDS but don't bother mention your recurring skin rash because "it's just something that happens" and you don't think it's an issue.

 

And the truth is, I've done a lot of research on narcolespy w/o cataplexy. I've looked into everything from the possibility that a precocious puberty or PCOS (endocrine-related issues) contributed to development of narcolepsy to thinks like secondary conditions developing from paraneoplastic syndromes. The trouble is that narcolespy is rare and not much is known about it and its development.

 

drago



#15 cremesoda34

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Posted 15 July 2013 - 03:56 AM

Thanks everyone for all the help, I have my neuro appt this morning and I will keep you updated to what was found out. I  once again had what seems normal sleeping patterns the past few days until yesterday and last night. I was hoping for those days it was gone lol.  Update to come after while.



#16 cremesoda34

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Posted 15 July 2013 - 06:07 AM

just got back from the neuro, He says narcolepsy for sure but he thinks I could be having temporal lobe seizures as well. Visual zig zag pattern in the eye without headache, keep smelling this horrible odor that nobody else can smell along with audio hallucinations .       He put me on lamictal xr starter pack and I have to have an eeg done.  The N could have came from my wreck last year july30th 2012 . I had a severe concussion and left temporal bone fracture from my head slamming into the pavement. So he said we will get this all figured out just takes time. I myself want it figured out right then as we all do but I do understand it takes time. Frustrating is all.



#17 Ferret

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Posted 15 July 2013 - 12:40 PM

Sour odour...kinda like pissy pants?



#18 DeathRabbit

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Posted 15 July 2013 - 03:15 PM

Could you be in Ketosis? You could be smelling the acetone scent in your breath if that's the case.



#19 Ferret

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Posted 15 July 2013 - 10:21 PM

That's a good point Wabbit.

I haven't smelled my weird odour since before diagnosis. The odour itself was only being experienced by myself and not the people with me. For me, it usually signalled a rip snortin' headache about to take place but I very rarely get headaches now.

I have an extraordinary sense of smell and very acute hearing...probably protection measurements developed by my body because I have been wearing glasses since I was three.



#20 cremesoda34

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Posted 16 July 2013 - 10:39 AM

 it's a horrible odor that comes and goes not only here at home but I have smelled it in several places, outside,stores and such and my husband and daughter never smell it. Comes and goes. Smells like a mouse that is dead and decaying someplace is how it smells it's very foul . When I first started smelling it I thought as most would, is it my breath and each time I had my husband tell me and always a no lol..

  My neuro said between that and the aurora (pattern in the eyes)  that he believes its temporal seizures . 

Seizures and sleep disorders will alot of times be present together. Day two on the Lamictal xr and it may be to early yet but so far my head feels normal  and last nights sleep was good and I woke up feeling refreshed compared to always waking up blah and tired. It could be the meds or I am just having a good day.  

  If I go back and look at some of the signs it makes sense but it also fits some of the N as well. Hearing things I swear people say when everyone around says they didn't, wondering why I am in the kitchen and not remembering I walked in their, Have trouble saying or starting a sentence, can't gets words to come out of my mouth . Hard to say and I am by far no neurologist. I just want it figured out and to be me again.  

   I guess the eeg and the doc will get it figured out soon. As for now I am keeping fingers crossed it's the meds working and stays that way.  I do not have the jerking like most think of with a seizure . Not even sure I have them but if he is right then of course I wouldn't know lol.

  To much to take in but I understand how he might come up with it.  severe concussion and temporal fracture can do alot to the brain and it all started  ( the N and possibly the seizure) just a few months ago  since the my left temporal fracture.  I must have knocked some wires loose in my brain lol. Sorry but I joke alot, it's easier to deal with that way.