- This topic has 14 replies, 6 voices, and was last updated 3 weeks, 2 days ago by fmustang1981. This post has been viewed 757 times
- June 13, 2018 at 2:51 pm #6009sleeepyheadParticipant
So, it’s been over a year since my psg and mslt and ih diagnosis. Not sure if it even matters, but I decided to look again at the narcolepsy symptoms to see if it fits. Mostly because my doctor kept saying how close I was to a narcolepsy diagnosis based on the sleep study. Plus, I definitely better after short naps, and feel sudden overwhelming feelings of sleepiness at random times (in addition to overall eds).
I don’t know why, but I just assumed I don’t have cataplexy or other symptoms like hypnogogic hallucinations just because I was thinking of more extreme examples.
But then I read that it could be mild, like briefly losing hand control, and having something fall from your hands or fly out of your hands. I’ve definitely had that happen, where my hand just inexplicably lets go, and I’m left thinking “well, that was odd.” So then I see tried to think if any other weird stuff fits. Sometimes, with really strong emotion, like if I’m very angry or scared or embarrassed, usually a negative emotion, I feel like it totally overwhelms me and affects my whole body, like I feel sort of shakey and weak, and my face feels weird and flushed. It was hard to think backnand remember exactly what was going on, so I decided to try to be more aware if this happened again. Most recently this happened when I was very upset about something and I felt and saw my hand twitching and then it felt almost a little numb or weak. I could still move it and I had feeling in it, but it definitely felt weaker and overall I felt somewhat weak, mostly in my hands.
I’ve also had some times where it felt like an electric shock in my arm, and a slightly painful muscle spasm in my torso, and I was bent forward until I could stand up straight. It wasn’t like I couldn’t move at all, but I couldn’t straighten up until the whole episode subsided. I don’t remember if there was a trigger or overall weakness or anything else, but it has happened at seemingly random times. I guess next time I’ll try to be more aware.
With hypnogogic hallucinations, I’ve regularly heard sounds/voices when I’m sort of still awake but falling asleep. Sometimes I’ve seen seen things like I’m dreaming but my eyesnare still open I think. Like if I’m reading amd falling asleep I’ll see things like they’re superimposed on the pages. But when this happens and I’m not lying down I usually realize I’m falling asleep and I need to lie down. I’ve never been confused about what was happening, though.
Anyway, I just felt like, hey, all these weird things might actually make sense now. I’ll mention it to my doctor next visit, but he already told me that treatment would be same even with narcolepsy,l diagnosis, so I guess it would just be comforting to have some explanation. Especially the weird electric shock/spasm/bending over thing. That had been a little worrisome but I haven’t gotten around to mentioning it to any doctors.
Any thoughts?June 13, 2018 at 3:14 pm #6013JasonKeymaster
@sleeepyhead The MSLT is hardly a perfect test and the rigid classifications are pretty ridiculous. In reality most experts worth a damn think narcolepsy and IH (except the super rare long sleep duration one) are the same condition. It’s more of a spectrum disorder with IH being at one end, N2 in the middle and N1 at the other end. Further when one study looked at people initially diagnosed with IH and tested later with an MSLT, many ended up with a positive diagnosis for narcolepsy. IMO, IH with normal sleep duration and other symptoms of N is just plain ol’ narcolepsy. Even stranger, while EDS is usually the first symptom, cataplexy can take years to develop suggesting a progressive slow degeneration of the orexin system.
But the only difference in treatment is that you have to be classified as having narcolepsy to get Xyrem. I’ll pm you some links that you may find insightful.June 13, 2018 at 3:16 pm #6015FerretModerator
Treatment won’t be the same if the cataplexy progresses. But it will be your choice as to whether or not to take the meds for it. Just be careful. Cataplexy is kind of a cause and effect type situation and you will get very good at recognizing your triggers and be aware to protect yourself.
I’ve heard of brain zaps when withdrawing from some meds but not muscle zaps. That’s unique.
Yes to the hypnogogic hallucinations too.
Unfortunately, your problems seen to be developing and yes, you should definitely mention all this to your Doctor.
Wishing you the best.January 23, 2021 at 4:18 pm #20535Laces1989Participant
I’ve been diagnosed with Ih due to no rem in naps on my mslt (I do dream on some of my 20 min naps at home though) and I can relate to dropping things but I’ve never paid attention to if I felt it was tied to emotion. I also have times where oddly enough I know I’m going to drop something and then it drops. It’s weird because I don’t feel like I’m losing control of it and then think oh no try to catch it. I just feel like I’m going to drop it and it’s almost like I throw it out of my hand. Other than that my eyes feel like they are melting sometimes when I am laughing but my dr isn’t convinced that is cataplexy. They water when it happens too but no one has visually noticed drooping. And my hands feel very weak sometimes to the point where I can’t even squeeze them in a fist but I don’t think it’s tied to emotion. I experience the exact same “hallucination” or lucid dreaming you describe. It’s like I realize I’m falling asleep because I become aware of the bizarre things I’m watching or hearing and then I either succumb to it and still aware let it go in and then lose consciousness or realizing it can make me come back to being awake. It’s very strange. I don’t know if I’m sleeping or awake.January 23, 2021 at 8:37 pm #20549FerretModerator
You appear to be struggling and I would like to help so I’m asking you to be more transparent in your every day life.
Could you please list any and ALL meds (even supplements) that you take or use…
Do you smoke or vape nicotine or use it in another way…
Do you smoke, vape or ingest any cannabinoids …
Sometimes the most mundane things can be clues and you are totally anonymous here. I would ask that members not use the pm function because the point of a forum is to openly discuss things that could very well help others in the future. You are here because you’re trying to sort things out. If you try something and it works, PLEASE SHARE IT here.
I came across a youtube video of an mslt by a young woman several years ago… I think it was her third or fourth and she was taking everyone through the process visually so they would know what to expect. IN BETWEEN THE NAPS SHE IS CHATTING AND SMOKING LIKE A CHIMNEY… YIKES! No wonder her mslt never shows REM. Nicotine is a REM suppressant… and so are other things.January 23, 2021 at 9:10 pm #20552Laces1989Participant
I take Wellbutrin twice daily for seasonal depression. I started that in October 2019 and have not been off it, even for my February 2020 psg and mslt. We talked about this in the past but my dr feels it is very unlikely to have affected my results. My dr also had had me taking iron and vitamin c daily since January 2020 because my iron stores have been chronically low but hemoglobin is usually still fine-sometimes I am anemic. I am right now and it’s probably from lack of iron in my diet. Since I’ve been on adderall I eat less. I started adderall in September of 2020. I was on Modafanil twice daily starting March 2020 but switched to adderall because it was contraindicated with my birth control. At first I was on adderall er 10 mg and it did nothing. I was so tired on it. Then after a month we increased it to 20mg er and it was life changing. I’m still tired but rarely do I feel like I’ll actually doze off. If I do it’s usually because I forgot to take my meds. I have to take them right when I wake up so I really try to establish a routine so that I never forget to take them. If I remember at 2pm it’s pretty risky to take them then…I also take Levothyroxine for hypothyroidism which I’ve had since 2015. It’s been controlled and they’ve never had to increase my dose. I have trichitillomania so I’ve been taking n acetyl cysteine for that for a few months now. It may be helping. A lot of meds help for a few weeks and then somehow they are ineffective so it’s a trial period. I’ve already relapsed. I’ve had this since 2010 or before. Doesn’t seem worsened by stimulants but likely worsens more from boredom, stress, and sedentary activity like reading, tv, driving, etc. I take Zyrtec daily for an autoimmune issue I have with exercise-I get itchy and nauseas. It mostly controls that.
Sleep is pretty regular. I sleep longer than most people. Probably 9-10 hours each night. My kids wake me up. I no longer work and eventually I think I’ll work part time. Too stressful and exhausting working full time. I almost always fall asleep very shortly after my head hits the pillow. I used to have what I think are hypnagogic hallucinations when I fell asleep but since I’ve been on adderall they rarely happen. I still wake a lot at night. I don’t know how much waking that I actually remember is normal but sometimes it feels like 15-20 times. I roll from side to side a lot. I don’t know why I wake up. I usually fall back to sleep within a few minutes but since I’ve been on adderall there are times where I can’t fall back asleep for hours. I have not just had dreams but nightmares a lot. Usually at least two nights per week. I wake up upset, sweating, sometimes nauseated, and often crying. I either don’t want to go back asleep because I can’t stop having these negative thought intrusions which I think will just pull me back into the dream. Sometimes I wake up from the dream and I know it was a bad dream and that I am awake but I get pulled into the dream and it just goes back and forth before I can wake up fully. The nightmares are either monsters or very sad things like my sons being murdered, abducted, dying from cancer, etc. I have dreams I dream of often. I remember many of my dreams but usually bad ones. I have a few where I don’t know if I slept walk and woke myself or if I dreamt the entire thing up. I have dreams that are layered where I think I woke up from a dream but I’m really asleep in my bed still but it tricks me because I’m often in the same room, same position in my bed, etc.
My diet isn’t terrible but not super healthy either. I drink 2-3 cups of coffee a day but stop long before bedtime. I usually don’t eat breakfast yet I’ll have lunch and dinner. Sometimes a slice of pie before bed while relaxing after kids go to sleep.January 23, 2021 at 9:12 pm #20554Laces1989Participant
Also before I was treated for Hypersomnia I woke up with very frequent headaches. I have a long historical of migraines. Now I usually only get headaches if I stayed up too late or maybe did too much the day before. I almost always wake up with the headaches I have. I drink a lot of water. Thanks for listening. It’s nice to have people that understand but are also all so different.January 23, 2021 at 9:23 pm #20557Laces1989Participant
Oh and I’ve never used nicotine. I may smoke marijuana once or twice a year but that’s it. I only occasionally drink alcohol and it’s usually only 1-2 drinks. Probably an average of one drink per month.January 24, 2021 at 1:37 am #20571FerretModerator
LOL. Oh, you’re working all right, you’re just not working OUTSIDE the home.
Can you give me the timing of your 1) thyroid med 2) wellbutrin and 3) Zyrtec
Would also like to know the iron supplement (kind of iron) and when you’re taking that too.January 24, 2021 at 10:05 am #20580Laces1989Participant
Very true. It’s constant work. But it’s less work on me to get to sleep in later and not have to dress up for anyone in the morning. And I at least get some chores done during the day instead of after a day at work being gone for 10-11 hours…
In the am I take (all at once): adderall er 20, Zyrtec, vitamin. C 1000mg, iron 27 mg (ferrous gluconate), Wellbutrin 100mg, n acetyl cysteine 600mg. Vitamin c is to help with iron absorption. I did starting today skip the iron and vitamin c and am taking it 2 hours after the adderall.
Pm: n acetyl cysteine 600mg, Wellbutrin 100mg, Levothyroxine 50mcg, metoprolol er succ 25mg (this is for inappropriate sinus tach which I’ve had for a few years before the hypersomnia treatment. My palpitations are almost nonexistent or a symptomatic since I’ve been on this med for several months now). I see a cardiologist annually and have had many tests and structurally my heart is fine and I have intermittent harmless rhythm abnormalities (pvcs, pacs, svt).January 24, 2021 at 1:00 pm #20582FerretModerator
I THINK you may have some counter productive timing and drugs going on. Assuming by PM you mean evening/before bed kind of timing?
These are the things that I have learned…
1) your thyroid med should be taken first thing in the a.m. on an empty stomach and nothing eaten for one hour… although you may drink coffee during that hour. And a big thank you to Jason for pointing that out to me.
2) best form of iron supplement to take is ferrous sulphate (with the C as you are already doing) and best on an empty stomach. https://blog.insidetracker.com/optimize-iron-intake-to-maximize-absorption
3) I totally understand the Adderall in the a.m. but taking the Zyrtec in the a.m.???
Zyrtec is an anti-histamine. Histamine keeps you awake. Would it not be better to space these two meds FAR apart? Take the Zyrtec at NIGHT since an anti-histamine is going to make you sleepy… and the two meds won’t be fighting each other.
These are just my queries and I would not change anything unless you talk with your Doctor. I know nothing about NAC. Last question… why are you taking Welbutrin year round if it was recommended for SAD?
Stay away from SUGAR in any shape or form…January 24, 2021 at 7:24 pm #20605Laces1989Participant
I used to take my thyroid med in the morning but I thought I read somewhere that I wasn’t supposed to take it with adderall. I’m also not supposed to take any vitamins or minerals near the levothyroxine but I’m also supposed to take those in the morning to avoid calcium since calcium inhibits iron absorption. It also affects thyroid hormone absorption. It’s very hard for me to remember to space out my meds every 1-2 hours several times per day. My pharmacist said it’s not typical to take the thyroid medicine at night but he said as long as I don’t eat within 2 hours before taking it that it should be fine. I used to take Zyrtec at night but I tend to get bad urticaria and if I miss a dose it flares up bad. Sometimes I even have a flare of it’s extra hit and humid in the evening which is typically when I go in a walk. I changed it to morning so that I got as much in my body as possible when I needed it (if that makes sense). I get nauseas and have asthma when it happens too. Very uncomfortable. I’ve never noticed it making me tired. I don’t take Benedryl because it knocks me out. I could try taking it at night in the winter since I’m less likely to work up a sweat with exercise. The depression meds I started in October of 2019. I honestly didn’t know I was supposed to go off of them. I have SAD from October-April so over half of the year. My dr did say he would start weaning me down in April and see how it goes and that the worst thing to do is go off of them in winter or fall. I’ve never really been suicidal but I have had a lot of negative intrusive thoughts and felt there is nothing to look forward to and that has really scared my husband. Just very flat affect. So since they seem to be helping I’ve just stayed on them.
Thank you for your concern. I just have so many things that technically shouldn’t be taken with other meds or foods and it’s so hard for me to keep track of. The good thing is my TSH has never been out of whack since treatment whether I take it morning or night. They check it twice per year.January 24, 2021 at 7:27 pm #20607Laces1989Participant
Also PM means directly before bed. I always do meds immediately upon awakening or as I crawl into bed.February 2, 2021 at 7:20 pm #21047NatdocParticipant
Not sure if you are aware but wellbutrin is a REM Suppressant so if you were taking it during the mslt it did most likely interfere with the results.Some of your symptoms are consistent with cataplexy s0me not so much.
What Thyroid med are you taking and at what dosage, thyroid meds do make a difference. And since it is a pet peave of mine I wonder what other results of your thyroid bloodwork reveal, TSH, T4, free T4,T3 Reverse T3 total T3 and thyroid antibodies, ferritin level, iron, TIBC and CRP (C reactive protein).
I do wish you all the bestMarch 22, 2021 at 7:31 pm #23008fmustang1981Participant
I’ve been getting a lot of stress at work lately. I had to stay up at night or spend only a few hours a day sleeping to finish my part of the work on time. I was in a similar state for several weeks in a row, and I ended up getting very tired and could not sleep if I went to bed earlier than usual. Also, every rustle of trees on the street greatly irritated me and ruined my concentration. I took a week off and thought about how I could relax during this time. I still decided to buy weed here https://www.dailymarijuana.co to relax my entire body. I smoked after I had had a good night sleep and immediately felt much better.
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