Chronic insomnia, anxiety, derealization and dizziness

[Britton]

Hi friends. I’m new here. I have a diagnosis of dysautotonomia and mast cell activation. I do have elevated catecholamines, so Doctor is thinking hyperPOTS. 

I have had chronic, treatment resistant insomnia for 4 years which has caused constant fight/flight anxiety, constant derealization and dizziness. My nearly n fog is terrible. For the past 4 years all I can do is lay on my couch. I’m miserable and making my family miserable. I’m truly at the end of my rope. I need sleep in the worst way. 

I have tried (I think) every possible medication, supplement and herb for insomnia and have paradoxical reactions to EVERYTHING. I was wondering if anyone had any thoughts? Also wondering if Colandor can help with these symptoms? Planning on talking to a new doctor about this next week. 

Thank you! 

[MomtoGiuliana]

So sorry.  This sounds totally miserable.  I have occasional severe insomnia.  I have not used medications, but I have tried addressing sleep hygiene which has helped somewhat.  When my POTS flares I have a very hard time sleeping properly due to symptoms you are describing.  The only thing that really helps is for these symptoms to resolve.  I take a beta blocker, and increase the dose when in a flare.  I also take a low dose SSRI, increase fluids and salt, wear compression, and get IV saline.  I also try meditation and breathing exercises.  The most useful breathing technique for me is the 4-7-8 breathing pattern.  I think you can do a search to find more on this.  Given your severe problems, I don't know if any of this is useful.  Hope you can get some relief very soon.

[Roxy]

I have found CBD oil to help, if you try it it must be the all cbd oil so that it is legal in all 50 states. If you are lucky enough to live in a state where marijuana is legal it will be easy to find a good quality safe cbd oil, otherwise due your research on the supplier you buy from. Please check with you doctor before trying.

[p8d]

I had terrible insomnia for 18 or so months when I first got sick.   Absolutely miserable.   An ANS neurologist said that sleep was critical to feeling well enough to start an exercise program.  I tried every drug/supplement and eventually found that Remeron/mitrazipine was/is the only thing that helps.  PCP ordered it.  I am crazy sensitive to many drugs and a small dose works.  Clonidine for hyper POTS also helped but that diagnosis came later.  Exercise is vital.  I started exercise after 5 days in the hospital weighing 84 pounds for severe malnutrition/deconditioning with 3 minutes on a stationary bike and now have worked up 20-30 minutes 3-4 times per week and strength training 2 days.  I definitely sleep better days I do aerobics and it helps with fatigue, really.

[zerohours000]

Not sure.  I haven't been given a dysautonomic diagnoses (yet) but I have severe sleeping disorder as well: can't sleep; can't stay asleep; and all my sleep is awful.  I also have insanely vivid dreams --- and will have them even if I have only slept for maybe 30 minutes.   Like, I'll have dreams I can totally remember, second by second, as if there, even if I only doze off for a short while.  And I sometimes feel as if my dreamworld is crossing over into my waking world --- and by that I mean it's difficult to tell when I'm falling asleep and when the dream is taking over.  It's pretty much disrupted my entire life.  I lost one job and am on the verge of losing this one.  Do you have anything similiar to this?  I don't have POTS or anything with my heart, but I do feel "wired" at times which probably means something in the sympathetic or parasympathetic system is way off.  I have no clue how this came about as I was "fine" 4 months ago.   Best of luck.  

[Pistol]

@p8d - I totally agree. I also had severe sleeping problems in the first few years of my onset of symptoms. It did not get better until I was somewhat stabilized with meds AND - most importantly - was able to do modest exercises. Now I sleep very well  - without sleep aids - when I am well enough to do my exercises. I noticed however that I start sleeping bad again when I get close to a flare ( which is when I also have to stop exercising ). So - chicken or egg first??? 

[yogini]

Have you had a sleep study?  

I think laying on the couch could exacerbate your symptoms. Can you force yourself to do some standing, walking or stretching? That might have the added benefit of tiring you out.

[Britton]

On 6/28/2018 at 4:25 PM, zerohours000 said:

Not sure.  I haven't been given a dysautonomic diagnoses (yet) but I have severe sleeping disorder as well: can't sleep; can't stay asleep; and all my sleep is awful.  I also have insanely vivid dreams --- and will have them even if I have only slept for maybe 30 minutes.   Like, I'll have dreams I can totally remember, second by second, as if there, even if I only doze off for a short while.  And I sometimes feel as if my dreamworld is crossing over into my waking world --- and by that I mean it's difficult to tell when I'm falling asleep and when the dream is taking over.  It's pretty much disrupted my entire life.  I lost one job and am on the verge of losing this one.  Do you have anything similiar to this?  I don't have POTS or anything with my heart, but I do feel "wired" at times which probably means something in the sympathetic or parasympathetic system is way off.  I have no clue how this came about as I was "fine" 4 months ago.   Best of luck.  

You sound EXACTLY like me:( 

[zerohours000]

6 hours ago, Britton said:

You sound EXACTLY like me:( 

I’m very worried I have MSA.  They say MSA also has with it poor sleep; vivid dreams.  I’ve been so stressed out that this is fatal (like ALS).  I am also starting to experience neuropathy in my hands and limbs and abdomen.  

[zerohours000]

On 6/28/2018 at 7:10 PM, p8d said:

I had terrible insomnia for 18 or so months when I first got sick.   Absolutely miserable.   An ANS neurologist said that sleep was critical to feeling well enough to start an exercise program.  I tried every drug/supplement and eventually found that Remeron/mitrazipine was/is the only thing that helps.  PCP ordered it.  I am crazy sensitive to many drugs and a small dose works.  Clonidine for hyper POTS also helped but that diagnosis came later.  Exercise is vital.  I started exercise after 5 days in the hospital weighing 84 pounds for severe malnutrition/deconditioning with 3 minutes on a stationary bike and now have worked up 20-30 minutes 3-4 times per week and strength training 2 days.  I definitely sleep better days I do aerobics and it helps with fatigue, really.

See.  In the beginning I would walk 5-7 miles per day (which always made me suspicious I didn’t actually have POTS or anything close to it, but could believe Dysautonomia) and even then it didn’t tire me out.  I would read entire books in a sitting; 300 pages a night some nights, never even getting remotely drowsy. When I first took mirtazipine I woke up so exhausted and fell asleep like 5 times the next day during the day.  I was like huzzuh!  But that slowly stopped working.  All it does now is stop the weird tremor I had in my index finger.  Because I think it’s also given to PD patients (not that I have that; I just read that somewhere).  Then I tried Trazadone—-nada; made my leg feel restless.  The Seroquil (sp?)—-same thing: more restless and awful ruminating.  Then Remeron—same; nada; not even one more granule of grit from the sandman.  The only thing that works is staying up until 6am when I’m tired of being up.  Even then my sleep is short, vivid, and garbage.  It usually takes me an hour to fall asleep too because I’m tossing and turning, or I get these awful jolts of electricity *right as I’m getting rested.*  I wake up two hours later, three if I’m lucky, hoping it’s been 5 hours (which I’d kill for right now), and I’m usually in a state of derealization or coming out of sleep paralysis.  It’s been dreadful.  Zzzquill was working early on, as I was mostly popping up to pee, but even that has stopped.  I have a sleep study in 4 hours (my usual bed time) and I’m just chilling in the ER waiting room.  If anyone has tips or advice or stories of their sleep disorders, I’m all ears.  I’m trying to really let go and just enjoy myself a bit ffs.  I always had issues with my mortality but now I really know that banging my head against the wall doesn’t phase that wall one bit, nor the truth of our mortality.  I’m not spiritual or religion; that has never been the issue.  The issue was always the letting go of that imaginary control, that small “I” which longs to live forever, uninterrupted, without loss, only gain.  I sometimes think of my inevitable demise at nighttime and I’ll just huff and puff about it; once, while falling asleep, I screamed out “No!” because the feeling of falling asleep, going unconscious, was always a paranoia of mine.  I know this is contributing to my symptoms and possibly my sleep disorder, as I associate unconsciousness with death, but I honestly never had this issue before my autonomic issues; in fact, I could’ve been accused of hypersomnia even, capable of sleeping anywhere and everywhere for any length of time, without a care if it was class or a rock concert I paid $200 for (Bob Dylan).  So I’m trying to relax, calm my system down, give it a break, as I wait for my sleep study in the ER and write a way too long post.

[Bluebonnet08]

I used the "Deep Sleep" Herbal Supplement before I got pregnant.  Was the only thing that helped me.  You can get it on amazon.

[zerohours000]

@britton Hey,  I hope you're getting some sleep.  Mine is still wonky but they gave me gabapentin and that at least makes me drowsy --- something I wasn't even close to getting to until 6am in the morning, after a long crappy night.  It makes me tired to the point where I don't want to wake up, and I can't fully say it's "restorative" sleep, but it's something.  I think some behavioral adjustments will have to do as well (INCLUDING to stop expecting great sleep every night, as I did in my pre-illness).  We have to lower the expectations a bit.  That in itself might help (don't know the %s just know it DOES help in the long-run).  Best of luck.

Zer0

[WreckingHotelRooms]

 

Does my post ring any bells or not? I also have Depersonization, only get Derealization under huge anxiety in passing. Yeah i've got dizziness etc. But the difference is I am totally stimulated, i don't have 'insomnia' as I don't sleep for days, it's way past that, it's totally stimulated, not sure if this is how you feel. Mirtazapine as people suggest (does nothing to me), Zoplicolines don't knock me out. Only thing i've found so far aren't viable, namely Xanax, tried 15 non benzo medications with no luck.

paradoxical reactions to EVERYTHING sounds like me, be interested if you can relate to my story, personally all I know is when my nervous system symptoms go down with Xanax (tremors etc) sleep is possible. Quietapine makes some people very sleep, have you tried it? (didn't make me)