Narcolepsy 1 with cataplexy

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Hello

I submit this as a diabetes complication but narcolepsy can itself cause diabetes. At the diagnosis of my diabetes I was exhausted but I did note have cataplexy ( cataplexy is loss of voluntary muscle control when triggered by emotions. Not to sound funny but reference the “fainting goats” ). Today my doctor says I’m a type 1 diabetic graduated from type 2. I use an insulin pump and also had a stroke sometime back. I’m fine… as a matter of fact it gets me more upset just talking about it than simply going on the ride and taking life a day at a time. I realize I may have one the disease lottery and almost none have my particular issues. So I want to pass on some advice instead. Goofy things you experience certainly are not all ways diabetes. Be sure to let you doctors know EVERYTHING and get them to enter it in you medical records. i have to retire on disability. Although I have been diagnosed clinically as a narcolepsy patient it takes forever to get the level that insurance wants. There are 3 months of latency waiting for the sleep study and there is no guarantee qualifications will be meet. Dont find yourself in a position where you have had a minor stroke need to retire but have years of diagnosis and treatment attempts. Even worse with parallel deseases that complicate everything. I was a hard worker who initially though it was all related to my blood sugar. I would like to see a topic of “disability” on this board, as it is the one thing that causes me the most anxiety. :wink:

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I know a narcolepsy diabetic (he’s type II). I am an epileptic diabetic.

Are you looking for information on how to be on disability? Like, legal disability? I bet that’s pretty different state to state? Is that true?

Here is how diabetes, as a disability, was defined. The epileptics are in here, but narcolepsy is kinda similar to epilepsy. http://main.diabetes.org/dorg/PDFs/Advocacy/forecast-stories/2009-05-defeating-discrimination.pdf

Thanks for the link. It is good to know that good people are advocates for us. I lived with the inconveniences of type 2 forever. Luckily in my case my job was completely accommodating. Unfortunitly my diseases have progressed and I can’t work. My cataplexy can be “triggered” by stress, anxiety or just about anything. My issue today is I have 5 doctors that do not have access or qualifications to read my medical MRIs etc. Recently, one contributor created a long document on the state of my diabetes and neuropathy. While this was kind of him, he did not fill out the VRS (Virginia retirement system) disability form.

I find it very stressful that I have to constantly review things. I asked VRS can they simply call my doctors and specify to them what they need. The legacy can’t, so I’m left in a role that I can barely tolerate,

At one time believed I was having seizures . Can you tell me more about your epilepsy experience?

Thanks

I’ll look around for other people on disability that might be able to provide some info. The only person I can think of off hand who might know about it is @Dave44. I could be wrong, but he might have info. ??? I’m sure its very frustrating. So much work. So complicated.

Hehehe, I can kinda tell you some stuff about seizures, but its not my real area of expertise and no one has memory of grand mal seizures (the big ones that freak people out) because you loose consciousness with those. I think I’ve had most types of seizures, I think, because I have lower left lobe epilepsy. Thats where they start in my brain, but then the goofy electrical energy can spread all over and provoke grand mals. Lower Left lobe seizures are different (and can be really neat). I call them the, “I see Jesus,” seizures and tend to think thats whats happening to people when they think that they have been abducted by aliens or see the virgin Mary. I might see the night sky turn bright, vibrant purple, like the world is part photograph and part cartoon. Or, my coffee might suddenly start smelling like liquor, and then the seatbelt I’m wearing feels like it is lit on fire and is burning my skin, then I might see floating, colored light. Sometimes I can think clearly and rationally. Sometimes I think I am traveling through time because all sense of time and physical space gets distorted. No two seizures, for me, are exactly alike. People are all different in their experience of epilepsy. My experience may not relate closely to yours. I believe that only 10% of epileptics have LLL epilepsy.

If you think you might have had more than one seizure in your life, you might get tested for epilepsy. You go to a neurologist. They make you go to sleep for a while. They read your brain waves while you sleep with an EEG. The definition of epilepsy is having more than one unexplained seizure in your life. Approximately 10% of the population will have a seizure in their life. If you have more than one, they start talking about epilepsy.

I was diagnosed kinda late in life (age 25) and wish I had known earlier because once I knew what was wrong, I was able to modify my behavior and make my quality of life much better. Things like getting enough sleep are very helpful. If you dont get enough sleep and start having seizures, you can sort of ‘train your brain’ to have seizures. What they like to say is, “Seizures beget more seizures.” Having one seizure increases the probability that you will have another. So, you really want to control them as fast as possible.

There are many epilepsy medications. Some have serious side effects. I am able to get by without them right now. Fingers crossed.

Being a diabetic made an epilepsy diagnosis difficult. I have always known that I had seizures, but I did not make the leap to epilepsy for some reason. I once spoke about it with my endocrinologist. I told her, “I think that high blood sugar makes me have seizures.” She said, “Thats not possible, if you were having seizures from high BG, then you would be dead.” I said, “Well, I’ve checked my blood sugar right after the seizure and it was not low. If I was having low BG seizures, and I didn’t eat anything, then I would be dead.” We just deadlocked there and thought the other person was crazy and never discussed it again.

I dont believe that I have ever lost consciousness from low blood sugar. But, I have lost consciousness and each time I was transported for diabetes because I was a known diabetic. When I looked back at a lifetime of “unexplained” events, I could tell that they were seizures (not low BG) because I would sleep for HOURS after each event. Thats an epilepsy thing. I just wouldn’t wake up for 6 hours and so the nurses wouldn’t wake me up. They just let me sleep. Nobody ever asked any deeper questions about it.

Not sure what type of info your looking for. Maybe that helps.

Seriously, thank you for you words. I read them with great interest. Your and my situation have some similarities and frankly I may appreciate the “I see Jesus” effect :-). I read your very discriptive post 3 times trying to isolate things in common as I … unlike my doctors clinical diagnosis are not entirely convinced my true issue is Narcolepsy with cataplexy. I spent a couple of days video taping 4 episodes…two were spontaneous and two were… induced by playing music that “triggered” me. Additionally narcolepsy can cause hallucinations witness me stopping dead while driving because a “phantom” truck was stopped in front of me. I’m lost and confused. I can’t simply “sit down” And the again me trying to figure it out is also a dead end. Today I saw my sleep doctor to give him the videos I took … I walk slow because of my stroke, at some point I felt it coming and stopped cold as I could not control my body. The doctor finally noticed I wasn’t behind him and came back to the hallway and my meldown ( including dropping my iPad Pro ) took place. Absolutely horrible.

Please if you know anyone on this board that may have narcolepsy please let me know or point them my way. Being new to this board do you think @Dave44 would have any issue with me contacting him ? Frankly I would like to have someone with my scenario do a layman’s look at my video. Oddly enough my wife (who is a nurse) thought I was having seizures because when the initial phases of the “cataplexy” occurs my eyes roll and only eye whites can be seen.

I think you have given me some correct questions to talk to my neurologist about… more and more, I’m finding doctors are like asking “google” a question. Everything depends on user asking the correct question to get any meaningful answer… I asked my sleep doctor why other possibilities have not been examined during my long waits for sleep study, he said he is just a sleep doctor and I would have to follow up on all other possibilities with my neurologist… ok google…

Another analog is your comment about sleep. I am much more likely to have cataplexy if my sleep was poor.

Deep breath… thanks and trust me… I do understand we are victims and not doctors. You comments about epilepsy have great value to me. :wink:

Do not contact me. I’ve reported mohe for spamming me yet again.

Sorry, man. I thought it was you that said you were on disability, but I’m wrong. One of you guys just posted that. There’s no option to search within the pages that I know of - just titles. I’m gonna post some fainting goats…just to lighten the mood. OMG, they are adorable.

I can’t think of another diabetic narcoleptic on the forum. I’ll keep an eye out. Its hard to unravel multiple illnesses. But, a non-diabetic narcoleptic friend of mine also went a very long time (all the way through college) before diagnosis. She really struggled. Diagnosis is half the battle. It never hurts to investigate a diagnosis…especially when it comes to brain stuff…its more complicated than body stuff. There’s no hard and fast data. Epilepsy is pretty easy to test for. Might be worth it. You have never had an EEG? They aren’t bad.

Nope, I wouldn’t contact Dave. I thought he said he was on disability. He’s mad at me, now. Might have thought it was a jab.

I didn’t know that you could get hallucinations from narcalepsy. If you see a neurologist, you should bring that video tape.

Some random ideas:
You referenced anxiety. Sometimes I get the “impending feelings of doom,” before a seizure. Like, an ominous or suspicious feeling like there’s something very dangerous about to happen. I might, mistakenly, attribute it to some stranger that’s just standing there. Like, I might think, “There’s something not right about that guy, he gives me a weird feeling. He’s gonna do something terrible,” but it has nothing to do with ‘that dude.’ Its my brain…trying to warn me about an impending brain failure.

Epileptics are more likely to have seizures when waking up or before going to bed, also. I don’t just get up and hop in the car in the morning for that reason. I like to give my brain some “warm up” time…just in case.

Its cool that your wife is a nurse. I bet that’s awesome. She’s a free second opinion, lol.

I have wondered FOREVER if music can cause seizures. Frequently, live music makes me feel strange. Like, the resonance makes me uncomfortable and nervous and I have to leave. I was never sure if that was because all the vibrations made me nervous because I cant feel my body very well and maybe I would get low BG and not recognize it. You got me to finally google it. Music can cause seizures! The brain is so strange! https://www.epilepsysociety.org.uk/music-and-epilepsy

Did you black out at the Doctors? Or, do you remember what happened?

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I was conscious during the event. Just another day on the farm…

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Sorry to hear of your situation. Are you still interested in info on disability? If you are talking about Social Security Disability, maybe I can be of some help.

I was also diagnosed with narcolepsy after complaining for a very long time about my inability to stay awake. At first, docs would just shrug off my complaints. Then, it was this, that, or another possibility. Then it was sleep apnea, snoring, etc. Finally, sleep studies were performed. NO, I did not have sleep apnea, did not snore, but I did have narcolepsy. I am very fortunate that I do NOT experience any cataplexy as you do.

I was forced to leave my work due to a neurological problem in my leg. After that, I was diagnosed with diabetes, heart disease, and a few dozen other chronic ailments. With all my illnesses, all my medications, and my physical limitations, no one seemed to listen when I told them about how my sleep had changed so dramatically.

My most recent addition to the list is my kidneys are beginning to fail. Oh, and my eyesight, but that has been several years. The kidneys continue to decline in function at each testing.

If I can be of any help, let me know. The disability process can be a challenge.

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You may find some helpful info here
https://www.nolo.com/legal-encyclopedia/disability-law

There are various discussions on this site related to disability if you do a search, or you can start a new topic with specific questions.

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Thank you, in the end the most important thing is not feeling alone. I also have started my journey on filling out the alphabet with diseases. My heart goes out to you as I understand the complex feeling you must have.

I to have multiple issues, but hands down my clinical diagnosis of narcolepsy with cataplexy generates raw anxiety. I was scheduled for my 5th sleep test ( but first next day MSLT ) and because my sleep was so “shallow” I did not qualify.

I have to wait 3 months to take another and I am just soo sick of the process.

I have enough with my Stroke, diabetic neuropathy and Clinical diagnoses of narcolepsy 1 to retire with disability from VRS, but I feel under represented without the medical diagnosis of narcolepsy. Furthermore, the geniuses of the narcolepsy could be something worse. I need to find out.

At this point I need to move forward with disability as my family has not time left … financially. My wife is working double shift and we are hitting the food banks. Through all this mess things are even more complicated as I have had to migrate from my insurance to my wife’s. Nevertheless we are handling it.

What tests did you do to nail down the medical narcolepsy diagnosis?

At this point I’m researching other more direct possibilities such as a spinal tap test.

Please be verbose about your experiences with social security.

Also when I have a sleep attack I immediately fall into a vivid rem dream… this also happens if I have a cataplexy event that I can’t get out of. Are your symptoms similar… ( minus the cataplexy ) ?

I have no faith in SSI and am thankful I have VRS.

Funny… really… as a matter of fact I used a similar video to explain to my colleagues what cataplexy was ! Although in honesty it is scary when it happens it is kind on funny. Gotta run and eat some hay. :wink:

A brief update…

I had a sleep deprived EEG. The planets were in line, the tide was right and the moon was at the proper phase ! I had a cataplexy issue followed by rem sleep laying right on the table. Yup perfect timing ! As a matter of fact I had a additional narcolepsy event quickly transitioning from “normal” to rem sleep during the end of the test. I left feeling sure my 10 year ordeal was near a diagnosed end.

Well, I did find out I don’t have epilepsy, and my rapid onset of rem sleep was recorded… but apparently EEGs won’t identify cataplexy.

The merry go round continues. To make it worse I could not enter deep sleep during a sleep study that would qualify me for the next days MSLT.

My sleep is becoming more and more fractured. I rarely sleep for greater than 2 hours followed by 10 minutes of disoriented awakenings, then return to loop.

I plan to take a lot of melatonin on the next study as my doctor says it won’t interfere with the MSLT.

I forgot… the only diagnosis achieved during the test was “transit loss of consciousness” which mandates that the DMV be notified and my license officially is “dormant”. This doesn’t upset me as I have not been driving for 6 months already. I would never forgive myself if I would hurt somebody because of my illness. I trade “freedom” for lack of personal guilt any day.

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Holy cow, Jethro. Good research. 2 hours seems pretty concerning. Keep after them for solutions. Sleep is a really big deal and can really mess things up.

Oh no. That happens. Its really tough to work with that DMV stuff. Remind me again which state you are in.

I live in Virginia.

I read somewhere that a doctor is obligated to notify the DMV on the “transit loss of consciousness “ thing… but thinking… it might be a state law and not federal? In any case if VA doesn’t require it they should… and it should be a federal law.

Its state law. Thats because the states control the DMV and Dept of Public Safety. All states deal with things differently. So, in Minnesota, we only get ‘in trouble’ with the DMV if we loose consciousness or have low BG event that effects our ability to operate a car while IN a car. But, any loss of consciousness, we are required to report. Low BG at home doesn’t really matter. But, in California, all low BG events count against your license. As an epileptic, in MN, DMV plays no role because I dont take epilepsy medications. But, it does require paperwork for diabetes because I take insulin. DMV plays no role for type IIs who dont take insulin in MN. In most states, the DMV doesn’t have any jurisdiction over your chronic illness management and doc appointments. But, Illinois has access to your entire medical record if you want to operate a vehicle of any kind. It really depends on your state gov.

ADA is trying to get state gov to not have so much influence and rules over diabetics in MN because diabetics do not crash cars at any higher rate that normal people. That will be up for committee next session again.

It gets pretty complicated.

It has been my experience that neither the state nor patients really meet basic requirements or legal obligations, so I’m in favor of getting rid of some of these requirements. I dont find that they do much to prevent problems. People who make an effort to handle things responsibly will do so. People who dont care, dont care. But, arbitrary rules can create a lot of hardship for people who try to comply with the law. People who want to get around the law, can do so, sometimes creating more danger for them and everyone else. For instance, diabetics who dont want to deal with DMV rules sometimes just refuse to take insulin. Thats not super helpful.

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I live in Ilinois and I’ve been T1 for 46 years and epileptic the last 19 years (I had a neuro who blew the diagnosis and I ‘officially’ found out when I drove off a bridge - but that’s another story).

I haven’t had any restrictions on my license. I stopped driving for about a year and a half between the epilepsy diagnosis and finding the proper meds, but once it was clearly under control I started driving again, with my neuro’s blessing of course. I haven’t been questioned about my eligibility for a license. I do get a letter from my Neurologist annually stating it’s OK to drive, but they’re instructions for me and not something he sends to the state or that I need to present. The topic of driving has only come up in passing with my endos and CDE, but again, not in the context of restrictions.

Geeze.