Evil Insomnia; BAD side effect from hydroxizine

Posted: May 1, 2013 in Basic Info, DSPS, symptoms and diagnostics

I have officially reached the end of my frayed rope.
Yes, I have been diagnosed with Delayed Sleep Phase Disorder years ago. But. that is really irrelevant at this point.
I’m not sleeping. I go up to 48 hrs w/o sleep sometimes, despite being extraordinarily exhausted from my strange blood pressure variations, my extremely painful SI joints, my lupus-related joint pains, and just plain feeling like crap 90% of the time.
(And, NO – I’m not bipolar. I am NOT experiencing manic episodes.)
Not getting enough sleep can wreak havoc on many body systems. It is a well-documented fact that a person can suffer severe cognitive and physical repercussions from sleep deprivation. It is the lack of REM cycles/restorative sleep that can do you in. Especially when lack of sleep lasts for months w/o a reprieve, the body systems start getting really wonky. It becomes hard to tell which came first – the sleep problem or the physical effects from not getting restorative sleep.

I follow good sleep hygiene: dark room, no electronic stuff w/I an hour of my regular 10p bedtime, no TV in the bedroom, no caffeine (I can’t drink caffeine at all for other reasons), no clock. I take a warm bath an hour before bedtime. I have tried literally over 30 different types of meditation, self-hypnosis, sleep-inducing music and binaural brain training programs. (They are all on my iPhone.) I don’t drink alcoholic beverages – I can’t with my bizarre medical issues. I’ve tried the light box routines. I’ve tried following strict in-bed and out-of-bed times. Ive tried yoga. i have tried getting outside daily and getting some corm of exercise. I’ve sampled every natural remedy available in the US – I estimate that I have spent close to $1,000 on “natural” remedies over the past couple of years. (Melatonin causes me to get severe migraines, so that is not an option for me. I get rebound jitters from it as well.) I tried Rescue Remedy, passion flower, valerian (stinky stuff), magnesium, phenlybuteric acid (a GABA Precursor, beta-phenyl-gamma-amiobutyric acid to be exact), GABA, chamomile tea, and various combos of the aforementioned. I have rebound reactions to diphenhydramine (Benedryl) plus it causes BP problems due to my ANS disorder), and Unisom – the other OTC sleep med has zero effect. I’ve been prescribed Rozerem (a melatonin cousin – causes migraines), Ambien (zero effect) and Lunesta (nada). I just tried Hydroxyzine HCL – and I get jittery and get hiccups from it. A few of the benzodiazepines do work (but not all), however, docs are not all that keen in prescribing them – at least MY docs aren’t.
Another issue – I start going pee every 20 minutes or so at about 830p every night. This continues throughout the night, unless I’m lucky enough to fall asleep. I average 10-15 bathroom trips before I even get close to falling asleep – heck, I don’t even get the chance to lay down long enough to TRY to sleep thanks to my wide-awake bladder.
What’s left for me to do?
I have had a sleep study recently – set up by a schiester of a doc that insisted i had sleep apnea within 30 seconds of meeting me. He has a website filled with ads for every type of CPAP device – no wonder he twists every answer I gave to his questions to fit his supplementary income stream. But, I don’t HAVE sleep apnea! I can’t even get to lay down, so how can that be my problem? I’m not even close to being overweight, I don’t have a thick neck, and my airway is “an anesthesiologist’s dream” according to my pain management team. (In other words, I’ve got a VERY open airway that’s easy to intubate!)

So-what do I do? Any ideas? Anyone have any secret Anasazi remedies they are willing to share with me? Or should i get someone to just whack me on the head with a cast iron frying pan each night?

UPDATE: I found out the hard way I can’t take hydroxizine – I have a rare (0.8% of those that take it) side effect – violent hiccups. Sounds funny, but I burst a small vessel in my esophagus from constant hiccuping for 8 hrs. Turns out that high BP (which I have at night) and Type 2 diabetes are contraindicated for taking this med. took a bit of digging to find the data – but at least I have a supportive and respectful PCP that doesn’t talk down to me, tell me “I’m turning hoof beats into zebras” or further discount my abilities.

In my FOURTY-NINE yrs on this planet, I’ve taken lots of meds to help me deal with the PTSD of being raped by my father for for 14 yrs. – I’ve been on ALL the benzos and the tricyclics, SSRIs and SSNRIs and even some atypical antipsychotics (that were incorrectly RX’d by a foreign doctor) and I KNOW what works for my body. It’s the YOUNG folks that abuse the drugs that have ruined it for us older patients that NEED certain medications just to try and get through a day. My medical experience as as EMT-IV comes in handy during these times and I try to “get by.” The best and most helpful drug for me, having the horrific flashbacks and now having my life stolen from me by my own body is sadly not prescribed anymore due to the “abuse potential.”

While its very nice how some people empathize and provide helpful input (you guys know who you are) it isn’t helpful to hear from “kids” young enough to be my offspring telling me how to live my life like I’m a dolt with a minimal IQ. I earned my experience in life the hard way and I refuse to have it publicly discounted or minimized by anyone that hasn’t a real clue what it’s like to be from a violent and abusive home, yet make something successful out of your life, only to have your achievements trashed and be cast aside due to a litany of medical issues no one – not even the expert doctors – really understand.

I think I’ll stick to actual advocacy I can be proud of, base my posts on research and data from both medical professionals’ standpoints and the data coming from the research sector. and stay away from the personal experience rhetoric.

It really feels like having a knife stuck in my chest when I hear from people who they think they know at less than half my age how I should run my life – especially when they haven’t an single ounce of respect for my life experience, professional training or abilities, or any of the real world experience I have as a science professional or writer.

  1. Jackie says:

    About 9 months ago, NOTHING would put me to sleep despite trying all the natural approaches and less natural approaches. Finally, my doctor prescribed Xanax. Alone, Ambien didn’t put me to sleep, but with Xanax, it did. I feel like the longer I can’t sleep, the harder it is because I’m thinking so hard about if I’ll fall asleep or not. Xanax helped with quieting those thoughts and now I don’t need it all of the time.

  2. Christine says:

    I JUST wrote a post about my insomnia issues. I totally and completely feel for you. I went a few days with very little sleep, and it made me literally crazy.

    And like you, I tried ALL of the “proper sleep hygiene tricks”…and nothing. I mean, it it sounds like you and I are way past the warm milk and light stretching routine 😉

    Like you, I’ve tried it all. I seem to be able to tolerate hydroxyzine just fine, but it definitely does not always work for me for sleep, or, I have to take such a high dose I am totally shot the next day.

    I will tell you, for the last three nights, I’ve taken 200mg of the supplement l-theanine, and while my sleep’s not perfect, it’s much, much better. I haven’t needed any other drugs with it. Of course, it could stop working tomorrow, as if often the case for me, but for now, it seems to be helping. Just an idea!

    • Lori says:

      Thank you! I use l -theanine for my hormonal cockatoo. It barely works for her , but it tushes the edge off. Thanks! I’m digging out the stuff now. In a wreck today. My PCP is but quite sure what to do with me. Everything she tried backfires. I must look like a uncooperative patient. I’m scared that ill be thrown in a mental hospital because of this….
      Thanks for understanding and being supportive!!!

      • Christine says:

        Please, I have SO many problems with SO many medications, I’m sure my doctors think I’m uncooperative, crazy, etc. Things either don’t work, or I have insane, unbearable side effects.

        I got so desperate a few weeks ago when I hadn’t slept and felt literally suicidal that I went to a naturopath and started taking a few supplements and tinctures. They’re definitely not a cure for me, and I do also take my regular medications, but it does seem to have taken the edge off of the anxiety and insomnia. At this point, I’ll take even a small edge 🙂

        Hang in there!!

      • Lori says:

        Thank you so much. It helps to hear I’m not alone. I’m still so scared. I am borderline suicidal – I have no other place to turn, I have appts w/ new docs – but they are MONTHS away. I’m not sure how to get they until then.

      • Christine says:

        Listen…I had to make a very tough decision a few weeks ago. I realized I was not doing well mentally, and I thought I might have to go get inpatient help. IF it gets that bad…remember, that’s always an option. If not today, then tomorrow, the next day, etc. Just keep that open as a possible option.

        Gentle hugs to you!!

      • Lori says:

        Thank you! Coincidentally, I do have a call into a counselor….
        Hugs back!!

      • Christine says:

        That is a really good idea.

        My counselor is here only half of the year….thankfully, she’s coming back this week PHEW!! 🙂

      • Lori says:

        I’m still waiting for an appt…I have been in counseling for years… But since this ANS diagnosis, I was taken off my SSNRI and my life had just degraded since. I’ve been on meds since I was 16 (PTSD) with the exception of the 3 yrs I was a cop. I had a lot of problems (mini-seizures) coming off of Cymbalta. I know I need to talk to someone, but I can’t honestly see what she can do for me. I feel talked out. I do realize I need someone to talk to with all the suicidal stuff that occupies my mind all the time. Life is good – except for me being so weirdly sick and not having docs that have a clue as to what to do about my symptoms.

      • Christine says:

        As a counselor who SEES a counselor, I still know what you mean! Sometimes, I’m like, “Come on!!! Talking about this crap is not going to fix anything!!!” But somehow, I usually feel better.

        And, I know PTSD is a tough one…and can be very scary. I tried EMDR for panic disorder, and it was very, very helpful. I’m always a fan of trying new things that generally can’t hurt, but may help.

      • Jackie says:

        I worry about appearing uncooperative and having them give up too. Usually, I tell the dr I feel as though I’m coming off as difficult, but I really am just struggling and want to find something that will work just as much as she does!

      • Lori says:

        It really helps when we get lucky enough to have a good PCP w/o a God Complex.

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