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Living with Narcolepsy

2nd sleep study?


#1

Ho guys! I'm new to the site. I was diagnosed almost 2 years ago with Excessive Daytime Sleepiness. I was exhausted ALL the time and would fall asleep anywhere and everywhere...While talking on the phone, while reading, while in the middle of a conversation. I was exhibiting automatic behavior while at work and most often, while driving. It would happen even with my kids in the car. I would talk to them but most of the time would make no sense. I've snapped out of it and realized I'm drifting into oncoming traffic, my tires have gone off the road or don't know where I am or how I got there. It's only by the grace of God that I haven't killed myself or someone else. I also sometimes have moments when my body is so overcome with exhaustion and my body feels weak as though it's filled with lead. My first sleep study showed excessive daytime sleepiness and I only entered REM once during the MSLT. The started me on 200 mg Nuvigal which I would take 1/2 upon waking in the morning & the other 1/2 about 3:00 to get through the rest of the day. It slowly became less and less effective and I started drinking tons of caffeine and 5 hour energy drinks to get by. The same old symptoms started becoming more and more frequent again.

I went back to a different doctor and he wants to do a second sleep study. I was just wondering if anyone else had to have more than one sleep study done. I just don't know if it can potentially show anything different or if I'm just wasting my time. I only know that someone has to figure this out because I desperately need help.

Any input would he so greatly appreciated!


#2

More than 1 study is not very unusual. Because I deal with the VA i have actually had more than 20. Last time they put a lead in the wrong spot and I told them before they turned on the machine. Then they turned on the machine realized I was right and moved the lead.

Most insurances will only pay for a certain number per year or lifetime. It would be very good to have that number before the study to ensure you do not exhaust the benefit for the year or for your lifetime.

Also you can accquire other sleep issues on top of just narcolepsy. I myself have sleep apnea and narcolepsy now. The hospitals look at me weird when I ask for my sleep medicine with my cpap, and about 90% of the time they wont give it to me.

If you are ever getting admitted make sure you bring sleep medicines. Some hospital pharmacies do not carry them.


#3

Also stop the soda and 5 hour drinks. It took 20 years but i now have about 1/3 of my teeth and my dental bill was over $20000 last year alone. The caffeine is definately not worth the long term effects. On top of this I am being treated for heart issues and I am only 41. I may have to stop stimulants entirely because of my heart.


#4

Thanks for the reply! Sometimes you feel so alone with these issues. It's good to know that there are people out there that can understand what we are dealing with.


#5

Jill welcome! Have faithI I have most and a few more symp. than you have. Getting meds right is trial and error. I have had success, finally with Modafinil/Provigil 100 MG, I take 2 of these in the morning between 7 - 8. Then I take 1 of these between 12 - 2. Nothing is a miracle .....I drink 1 c. of coffee in the am and then throughout the day I drink 4 8 OZ. cans of Diet Coke. Maybe not a good ideal, but I am a retired teach. and work 3 afternoons a wk. as a Companion to a lady that has MS. Then I have other activities that I am involved with and want to live my life as FULLY as I can for as long as I can. Check with your dr about your meds. Best of luck. You are in my thoughts and prayers. Peace, Helena.

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#6

I would say a second study would be good. Maybe it would give you more answers on what you can do. also make sure that the doctor you are dealing with is listening to you. I was diagnosed a year ago and saw three different doctors before I found the one for me. She listens to what I say, also watches how I act when I see her and I can email her.


#7

Welcome I have had 2 sleep studies myself and I was diagnosed with A-Typacal narcolepsy due to the fact that I have all the symptoms but I didn’t have 2 episodes of Rem sleep during the study. I agree the meds are trial an error my meds have changed so many time but I know there is no miracle pill that week keep me alert all day I just keep my head up and keep fighting this debilitating disease after all I have 3 kids and a amazing husband that needs me. But trust me if I say it don’t get hard most of the time then I would be lying. But I have a great doctor and a wonderful psychiatrist that both work together to give me the best treatment possible. Best wishes to u and please have that 2nd study done you never know they might see something they missed in the 1st one; )


#8

I've been told that only one sleep study was necessary to establish the diagnosis of Narcolepsy. Perhaps your doctor wants to see if it's gotten worse. I would search around your area to see if there is a doctor who specializes in sleep disorders. Click on the link below. I would do as much research as I could by reading up on sleep disorders, etc.

Find a Sleep Professional

As for coffee ... I used to drink 7 cups a day. I used to work the 3pm-11pm and 11pm-7am shifts. It really didn't help, except for making me sleepier. I haven't had coffee in about 20 years, but it took me about six months to quit. I tried to quit cold-turkey for 3 days before I went nuts. After that I weaned myself off caffeine by slowly increasing the percentage of decaf in the mix. That means you have to take your own coffee to work in a Thermos.

There are many factors that make Narcolepsy worse. Slowly begin to examine every little detail in your everyday behaviors and write down or keep a mental record of everything you do that makes it better or worse. Carry a 3" by 5" spiral notepad with you all the time.


#9

Hi Jill,

How did your sleep study go? Were the results any different than they were with your previous doctor?


#10

Yes, with the previous sleep study I only went into REM once during the MLST. My symptoms continued to get worse, hence the second study with a very well respected sleep specialist. I definitely was diagnosed with Narcolepsy this time around. Went into REM twice…and very quickly. In the process of finding a medication that works for me because the Nuvigal does nothing for me, especially if I’m behind the wheel driving. But I have to be cautious about what I can take because I have 2 other autoimmune diseases as well, one which has compromised my liver. I joke with people telling them that I’m “collecting” autoimmune diseases. Gotta keep some sense of humor or some days I’ll go crazy! Thank you for asking how the study went. Nice to know some people get what we’re going through.


#11

You are in the thoughts and prayers of many. I too have Nar., Lupus, Sjorn. Syn,, & Chron. Anemia.....a walking

pharmacy. I hope that they will find other options that will work for you. I do not like to think of myself in a battle

with these diseases or why??? I just try to live each day to the fullest. Hold Fast! Take care. Peace, Helena


#12

Jill, I'm so glad you got good information this time around! Sense of humor is a big +, and give yourself credit for perseverance and the patience it takes to find the best treatment for you. I'm glad your doc knows about your other diagnoses. Good news, and best wishes!


#13

Yes I ended up having four different sleep studies done because of how severe my narcolepsy is the doctor started me out at 3 Ritalin per day because that’s the recommended daily dosage with feather sleep studies they realized that they had to increase the dosage I am now up to 5 ritalin per day at 20 milligrams each and I do a massive amount of caffeine pills they’re 200 milligrams of caffeine each capsule I take 2 in the morning along with my Ritalin and then throughout the day I average about 900 milligrams of caffeine not counting my coffee and tea. On top of that as if that wouldn’t be enough to move a locomotive I do nicotine 18 - 20 grams through an e cigarette which I call my pipe especially when I’m driving. Now getting away from the drug stimulations my other stimulations are I wear a cowgirl hat 4 if I’m in the truck it will tap the back of the seat and if I do need to take a power nap somewhere in a business or even in the truck I can easily pulled the cowgirl hat over my eyes I wear tight binding latex clothing not only to make me look younger and skinnier but to be uncomfortable I wear dangling jewelry that jingles as well as on my hat things will jingle the tinging tapping sound of the metal is annoying I purposely double pierced my ears so I could wear your rings that clean together. I hang things in my window of my truck that dangle down and swing side to side for eye stimulation on the back of my head board to get up early in the morning I have a very loud bass speaker that increases the bass sound of music that it actually sends a vibration across my waterbed we all know the boom boom boom that vibrates our car going down the road well its like that it is bluetooth to my phone before I go to bed and I have Pandora alarm clock set as my last alarm clock so if I don’t hear my a normal alarm clocks I will most definitely be stimulated when my Pandora alarm clock goes off I chose Pandora because when the alarm clock music goes off it is always something different it is not the same song so I don’t get used to the sound. On my nightstand I have my ritalin and caffeine and my e cigarette nicotine fix in two bottles of water. If this does not wake me up my family comes barging in the room mainly my daughter screaming at me mama turn that music off your vibrating the whole house. Lol and yes I am a walking pharmacist as well with rheumatoid arthritis osteoarthritis fibromyalgia depression and as my daughter says mild bipolar I am i walking pharmacist I keep my immune disorders grounded to the bedroom I don’t take my medicine religiously but when the immune disorder children start trying to sneak out of the bedroom I start taking the medicine. I consider myself a person that is always ready to look at things and think outside of the box to try to come up with a better solution for a solution that works for me and that my family can accept I have been dealing with narcolepsy for quite some time and yes I have gone through the frustrations of being extremely mad at the universe for allowing me to have all these disorders on top of this I have been 365 pounds wheelchair bound have lost down to 114 pounds then went back up with in just a couple years 280 and now down to 214 and still losing. On top of everything I was also tested positive for TB then they said it had not gotten into my lungs it was just in my blood system but that was a full year of being terrified to get around anybody with babies or elderly family members it still raises a scary alarm to go around a newborn baby because I know I carry TB in my blood system but that also could be the medications playing tricks on the lab work methotrexate an Enbrel I’ve been told will do that but they still wanted me to play it safe and avoid being around newborn babies this was very depressing to me as you can imagine. As I say once I get one immune disorder under control I am given the gift of a new one Best of luck to you more studies will reveal more things…


#14

I was diagnosed almost 13 years ago with severe narcolepsy and was started on Provigil at 200mgs/day. Worked beautifully until after about 5 years when it started making me sick. I was then put on Adderall XR 25mg/day which worked great for a few months but I eventually had to be bumped to 30mgs. After a few years I was layed off and had no insurance and could no longer afford the XR script. So I was put on Adderall 20mgs and Ritalin 20mgs/day. That worked fine for years until very recently. During this time my sleep specialist and the entire office closed down and my problem was handed over to my regular PCP. This year I had to be bumped to Adderall 30mgs with Ritalin 20mgs, then Adderall 30mgs/day and Ritalin 20mgs/twice a day. Then the meds (having been a slight problem from the beginning with making me twitchy) got even worse with their side effects and my Adderall dose was changed to 20mgs/twice a day. A few months we decided to give Provigil another try. So I was put on 100mgs/day plus Adderall 15mgs 3 times/day. The Provigil had to finally be bumped to 400mgs and even then was still not helping. I was recently switched to Nuvigil 250mgs/day plus Adderall 15mgs 3 times/day and sent to a new sleep specialist who ran a second sleep study (I was actually getting somewhere with my babbling lol). According to this sleep study, they’re claiming I don’t have narcolepsy. Honestly, the results blew me away as I can sleep all day. 8-16 hours or even more at times, wake up and within a few hours be falling asleep again. I’m almost constantly in a fog, there’s no way I don’t have it. I worry that because they told me to take my meds as I usually would, it interefered with the outcome. At this point, I’ve no idea yet why my results came back negative. I’ve been so worried about what I’m going to do if they stop treatment because without it I cannot function. Before I was diagnosed I would blink and lose hours of my day and not know what happened. I nearly lost my kids for neglect because I could not stay awake and one got out of the house as a toddler and the police were called in. I’ve left work only to wake up at home on my stairs and not remember driving home or falling asleep. I’ve lost jobs over it even. I’m terrified that they’re just going to ignore my symptoms. I have been wondering if my meds were the reason the tests results came out as they did. Has anyone else had anything similar happen? Mind you, when I was diagnosed, my doctor said I had a pretty severe case of it so I don’t see how I’ve gone from severe narcolepsy without cataplexy to miraculously cured (but with all the symptoms still) 13 years later.