April 26, 2022 at 3:04 am #50456
I have Narcolepsy in addition to depression, some anxiety and migraines. Most people, including health care workers, don’t know much about narcolepsy. The short version is that it is an inability to regulate sleep and wakefulness. This means you’re tired nearly all of the time, both because your brain doesn’t have the ability to stay awake well and because you don’t have quality sleep because you spend a lot of time in the wrong type of sleep (REM vs alpha, delta, etc) So i’m already tired to some degree almost all of the time, BUT since I’ve started TMS I’ve gotten so tired I am barely functioning.
I have finished 30 treatments and for the last 3 full weeks I’ve been so tired that on most work days I’ve finished work (I work from home) and have left my office, maybe gotten some food, then have gone right to bed. Some nights I’ve slept 11 or 12 hours. This is in addition to the 45 min nap i take daily on my lunch hour. Please don’t say “lucky you” or similar as it is not lucky to have to sleep that much. It is life sucking and is awful.
Does anyone else out there have Narcolepsy too, or has anyone had this much tiredness? I’ve gotten no relief of depression either. I’m trying to be patient, but it is all i can do to get to my sessions and to work enough to keep my job. The staff at my TMS place haven’t seen this reaction before, nor have they had a patient with Narcolepsy that they know of.
And just to complicate things some more, I’m peri-menopausal and had bariatric surgery 8 months ago, so I also have the hormonal changes from both of those things that may or may not be factors.
Any ideas? Suggestions? Similar experiences? Thanks!April 26, 2022 at 3:31 am #50457
Have you been diagnosed with narcolepsy after a sleep study? Just curious.
I do not have narcolepsy but want to respond to your not getting better after the full round of treatments. I appear to be a late bloomer when it comes to TMS treatments and/or antidepressants. I have had two rounds of TMS – 6 months apart (second one was only needed due to a family death which sent me back into that deep hole). Both times, I did not feel better until maybe a couple of weeks after the treatments had ended. Someone else (like the technician) may have noticed an improvement toward the end of the treatments, but I did not sense it.
After the first round and feeling better, I did not need any medication. I was content with life. After the second round of treatments, I was better but not 100% as before. I am now on an antidepressant and once again content with life. However, I have very little motivation.
TMS doesn’t work for everyone and there are different methods used by different doctors. If you don’t get better within a couple of weeks, perhaps you could consult with a different provider.
Good luck to you in finding peace in your life and please keep us posted as to what transpires..May 16, 2022 at 2:34 am #50458
Yes, I have narcolepsy and it is always diagnosed after a sleep study and in my case by a neurologist. Why do you ask?
I am now 2 weeks past the 36th/last treatment of my first round of TMS. When I’m able to move around at home, the weather is good and I’m staying busy i’m ok (just ok), but when I try to work (I work from home at a desk job) i get slower and slower and more and more sad and hopeless. I’m not yet getting much better and am certainly not yet back to what my before-TMS-normal was.
I did consult with my own psychiatrist that has nothing to do with the place where I’m receiving my TMS. He encouraged me to continue treatment. I was leaning that way anyway, so that’s what i plan to do.
Thanks for your comment MarilynMay 16, 2022 at 3:05 am #50459
I was just curious as to whether or not you had a sleep study and were diagnosed by a professional vs. self-diagnosing. My ex had narcolepsy so I am somewhat familiar with it, but not as much as you.
I’m sorry to hear that you have not improved significantly. As I mentioned above, the 1st time I had the full TMS treatments, it worked 100% for me, or close. The second time it helped, but not as good as the first time. My theory is that the 2nd time it cleaned things up enough in my brain that antidepressants were able to work. However, it tood 8-12 weeks before I saw an improvement with the medication. So be it TMS or medication, it takes much longer than most to work on me.
I’m only sharing this with you in case it may be of help. Everyone is different. I continue to hope for the best for you and that life turns around very soon.
MarilynMay 16, 2022 at 4:07 am #50460
Unfortunately, i’m very familiar with narcolepsy. And in my experience i tend to react to things differently than people without narcolepsy, such as medications and anesthesia, so i guess it shouldn’t surprise me that I’ve been more tired from this treatment.
I don’t like that i’ve gotten so much more tired that it has taken away everything in my life except for working and sleeping, and I don’t like that i wasn’t warned of that or any other side effect. I have to wonder if that is partly because they aren’t used to working with people who work full time. I would assume that by the time you’re in a position to be desperate enough to seek out TMS that you might not have been able to hold a job long before that point. I know i’ve been on the edge of not being able to many times. So i wonder if the reason they haven’t taken my “dip” as seriously as they should have because most of their other patients aren’t employed and can go home and nap. Because they can, they also might not be reporting their symptoms as it isn’t interrupting their lives and risking their livelihood like it has mine? This is a total guess though.May 16, 2022 at 3:40 pm #50461
I think you should try another TMS clinic and start from scratch. See if you can find one that has psychiatrists as part of their crew. If that doesn’t work, then you know TMS is not for you. It’s sad for me to read the stories of those who it doesn’t work for. I count my blessings.
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