Introducing Myself

[Thao]

Hi folks! I am a newbie and recently signed up for this forum due to a facebook encounter with a person who also dealt with insomnia issues. The product was Liftmode's Oleamide and I had asked her questions regarding if she found it effective, as I struggle with severe insomnia. I would say that I've always had struggles with sleep but never full blown insomnia until I was suggested to go on a No Carb diet by my gastro who had diagnosed me with SIBO (small intestinal bacterial overgrowth). I unwittingly went on this diet and soon after developed insomnia. I thought all it took was an increase in carbs to gain back my sleep, but this hasn't been the case as it is now 2+ years over. I still struggle with SIBO, but this insomnia is the worst thing that can happen to me. Coupled with the fact that I have MS (multiple sclerosis-have had this for 12 years), I feel like I've been dealt a really big blow with now 3 confounding health issues. It's as if my body no longer recognizes how to fall asleep nor maintain sleep. My neuro and sleep doc have at one point or another issued me generic ambien and sonata, which is not consistenly effective on me. Forget about suggesting melatonin, herbals, CBT program, or sleep hygiene tips on me. None have worked on me. I suspect there is some sort of hypothalamus or HPA axis dysfunction in me. The latest stretch of non-sleep (where I literally only slept for 30 minutes-7am to 7:30am) has occurred since June. No stressors....just happened. The 30 minutes/day of sleep is the kind that starts straight away in a dream state, where I still feel alert and can hear my son wake up for school. I was so sleep deprived that I began having hypnic jerks where the ambien or sonata generic prescribed by the sleep specialist would not even work since whenever I felt slight induction of sleep, that is when the hypnic jerks alert me back to a state of being awake. They are abrupt and sharp in nature. It took 3 weeks of nightly ambien to finally settle the jerks down (I took the ambien still until I had several good nights of 1-3 hrs sleep and that was enough to reduce the jerks to be less in frequency and more subtle in nature). From googling, I had read that some folks stopped their hypnic jerks with magnesium. Well, the magnesium relaxed me, but this was the issue...When my body gets relaxed, that is when the hypnic jerks happen. So magnesium was a fail for me.

Anyway, I will stop this long intro...Hope to learn a lot from reading this forum regarding insomnia, as I find that my neuro. sleep doc, and primary doc, are readily categorizing me with depression. I always say to them that I am depressed due to the insomnia, not the other way around--they think I am depressed and because of that, I have insomnia. Annoying.

 

[2earls]

That's terrible! I have very mild insomnia compared to you and even that is frustrating. I sincerely hope that you can find an answer to your problem. Sounds like you have already tried the common cures, what about MM or even Kratom? I would think that just about anything would be worth a try. Good luck in finding a cure and welcome to the forum.

2earls 

 

[Thao]

What does MM stand for? I haven't tried Kratom but just tried medical cannabis last Friday. I explained to the lady my health issues, specifically my hypnic jerks that prevent me from falling asleep; and just my severe insomnia in general. She gave me hope by saying that MJ can definitely help my insomnia. I bought her suggested chocolate candy bar that was an Indica strain and followed instructions (she said that there are four bars and to only eat half of one of the bars, since it was my first time using MJ).

That night, I was so happy that there would be a natural solution to my insomnia and debilitating hypnic jerks. I prepared for bed and I ate it, and several hours later, experienced the worst feelings ever! I was kept up all night (no sleep) with continual hypnic jerks. It seemed as if the MJ exacerbated the jerks more so than help it. I have been so traumatized by the situation that I haven't tried her 2nd suggestion, which is to vape it. She says it will give a more immediate effect rather than edible MJ that lasts longer in the system...but still too afraid to try it as you would not believe how awful it was to not get any sleep and convulse as if I was possessed by a demon...My hypnic jerks were so severe, I thought that I was experiencing severe seizures. My heart was also racing and my blood pressure skyrocketed to 150/100 with a pulse rate of 102.

I just need to find something that would quickly induce me to sleep, as the hypnic jerks always occur during my wake/sleep transition where my body is readying itself for sleep. The jerks then happen and prevent me from falling asleep. You know how in normal people, they get like a leg jerk or so that wake them up when they are sleeping? But then can fall back to sleep? Imagine having jerks that happen back to back every single time you try to drift to sleep! People just don't know how debilitating this can be!

Anything that just sedates me, but without quickly making me fall asleep...this is the problem...the sedation/calming process is what triggers my hypnic jerks...I think my body is broken and the jerks happen when I am in a state of calm (about to fall asleep) as a fight or flight type of mechanism...Have been crying for the past few days with this unrelenting issue that has broken me to a point where I am desperate enough to go on this board, obviously...the docs don't seem to react as promptly to my issues as I'd like...so frustrating!

 

[2earls]

MM is medical Marijuana which doesn't sound like it was the answer. Do you think there could be a psychological aspect to your problem? I would think that after suffering as long as you have, that along with being depressed, maybe you are psyched out, for lack of a more medical sounding description.

I wish I knew an easy answer. I can't believe that your doctor isn't more concerned about your well being. Are there any of those sleep study places in your vicinity? You definitely need a doctor who is willing to keep trying different approaches until something works. Whether it be medicines, therapy, hypnosis, alternative medicine; you obviously can't go on like this. I almost feel guilty that I will be drifting off in an hour or so. Benzos help me sleep better, but I don't take them all the time out of fear that I will become dependant on them. If I were in your shoes, I don't think I would care.

 

[Thao]

I wouldn't say the initial onset of insomnia was psychological. I just one day had it where I couldn't fall asleep. Living in an Asian household, we were raised to fear drugs and medication, and to only use them when necessary. I never even had Tylenol given to me as a kid when I would get fevers. So suffice it to say, I've been very disciplined enough to go through Cognitive Behavioral Therapy, taken all sorts of herbs, and gone through 4 different acupuncturists (going 3 times a week) for a span of 2 years.

However, since I am now battling hypnic jerks (a whole new beast in itself---just imagine your body drifting to sleep but constantly being startled by these jerks every few minutes...not once in a while...EVERY TIME I am about to drift to sleep even while I'm on AMBIEN), there is the anxiety from that. But I have to say, anti-anxiety drugs didn't work on me, nor antidepressants. In fact, they made my hypnic jerks worst...if only the jerks would disappear...I think I can handle just the pure insomnia and at this point, am willing to use meds. The problem is, my sleep doc treats everyone the same--with the fear that they might potentially abuse sleep meds...So she has me only on Ambien, which works only a few times out of the week, and only gives me 3 or 4 hours of non-refreshing sleep.

I am having a 2nd consult with a neuro from a sleep center next week, and am hopeful that I get better help, as it sucks to go on this long with sleep deprivation. And you're right. At this point, I wouldn't care if I had to take a sleep med every single night to get me to sleep. I'll deal with the tolerance and dependence issues later...