Archive for the ‘DSPS’ Category

Made by me on someecards.com

Made by me on someecards.com

I recently posted that received a course of TMS (transcranial magnetic stimulation) to knock back a major depressive episode.

However, I failed to mention that I experienced several other changes in symptoms  – symptoms other than the “F5 tornado.”

There HAS to be a connection between whatever the TMS does and the symptoms from which I experienced relief…which leads me to believe that the doctors are missing a serious connection between all my weird symptoms that make me the zebra I am.

So, what changed during treatment?

1.  Much fewer migraines….

2.  My odd and unexplained breast regrowth ceased – along with the pain that went along with the growth. (I had a reduction Nov 2013 due to the major and PAINFUL increase in size of my breasts from a 34DDD to a 34I in 4 yrs). My reduction was “supposed” to bring me to a 34C. HA. I quickly (and PAINFULLY) grew from that alleged size to a 34DDD in 4 months post-reduction. NOTE: all hormonal and endocrine levels always test “normal” – even though any bachelor’s level bio student knows endocrine levels can change on a moment-to-moment basis, the doctors that order these tests seem to stand firm that everything is “normal. Yeah…right. As the Ghostbusters always said – “we are ready to believe you.” NOT.

3. An increase in dreams. Some good – some bad – but all were vivid and memorable.

4. Longer periods of deep and restful sleep (I wear 2 “life trackers” that monitor sleep because of my weird sleep history (See my prior post on DSPS  – delayed sleep phase disorder).

5. A marked increase in sensitivity to medications: Clonidine (a BP medication), and MSIR (morphine sulfate immediate-release).I had to completely STOP the Clonidine as the effects that it caused during the TMS were debilitating – I literally would be unable to wake-up for 14+ hours if I took even half the smallest dose.) I take the MSIR for chronic back and leg pain I have had for 16+ years  – and the 6 surgeries I have had have failed to completely resolve the pain. During the TMS sessions, I required a lower dose of the MSIR to get pain relief, and, for the first time, I experienced side effects (a bit of nausea and extreme sleepiness) from my usual dose and had to reduce it by half.

6.  I had far less incidents of low blood pressure (associated with my Autonomic System Disorder – I have many posts and links to others’ posts about this condition on my blog.

What has happened with these symptoms since I ceased treatment one month ago?

1.  I am once again being awakened by migraines – with nausea, photophobia and positional increase in pain. I am getting 2-3 migraines per week.

2. My breasts are sore, lumpy and swollen. Gads, I hope they are not growing again. I just bought new bras because I though the growth had ceased.)

3. I am still dreaming, but less frequently. And they “loop” – much like they did before the TMS.

4. Problems getting to sleep AND staying asleep. (And, I cannot take any sleep aids due to the side effects I have from any meds used to sleep since this odd Autonomic Disorder I have kicked in back in 2012.

5. I have had to increase my MSIR dose back to pre-TMS Levels. I seem to have more pain in my back as well.

6. My BP and heart rate are becoming much more labile (variable) again. I have had to take additional beta-blockers recently to address the increase heart rate and chest pain.

Sooo….what is the connection? So far, none of my doctors have tried to solve this mystery. Why not?  A simple Google search can provide clues….

Which is what I did. It didn’t take long at all. I am an experienced researcher with decades of research experience so I know how to word my searches to get the best results. I am sure that diagnostic research was covered at some point in medical school.

What did I find out?  All of these things are connected in some way to DOPAMINE levels, and are things that are effected by what is known as the HPA (Hypothalamic-Pituitary-Adrenal) Axis. (Check out the link for hundreds of images from sources that could provide clues to my doctors….note the 3 words I used for the search…real rough, huh?)

HELLO? Can someone PLEASE tell me why a single medical professional cannot take this information and try to help me?  Doesn’t anyone care about me and the quality of my life???

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.

 

Day27

If I wrote a book, which is actually one of my #1 goals, what would I call it??

What would I discuss?

How would I discuss it?

Do I write in first person, or third person?

Do I detail all my abuses from age one, or do I focus on my illnesses and backtrack (using scientific studies on trauma) how the abuses may have caused or influenced my conditions?

Random Ideas for Titles?

– Miss Diagnosed

– Not Quite Enough

– Out of the Ashes

– Product of Violence

– Living in Forty Places

-No Place to Call “Home”

– You Don’t Look Sick!

– In Spite of it All

– It’s Easier to Hurt on the Outside

 

Ideas, anyone?

(See also my post entitled “Hey Lifetime, Make a Movie of This!”)

Day26

Since I have more than one condition, I have a plethora of ideas for a day of healthy living. Just being able to do what I used to be able to do before the back issues, before the ANS disorder, before everything else that has stolen my life…

I’d get up and eat a decent -sized breakfast and not worry about my lack of gastric motility.

I’d hop the train to the airport to fly to Utah – and I’d walk to the station, because I CAN. (no chest pain, dyspnea, palpitations).

I’d go rock-climbing. In Utah, of course – where I learned back in 2000.

I’d head back to the Red Mountain Spa in Ivins, UT (where I would be staying for the rock-climbing), get a deep-tissue massage, and not worry about my horrible, painful circulation problems this insidious ANS disorder has left me with.

I’d not give a single thought to spending time on the computer reading medical journal articles, trying to locate experts or explanations for the various conditions I have (had).

I go out for a nice, big dinner.  And, I’d have a huge dessert!

I’d take a walk amongst the Anasazi petroglyphs, and sit on the rocks and watch the sunset.

I’d soak in the hot tub in my room for an hour – because my body can handle temperature variants now.

I’d fall asleep, peacefully, without any medications, and dream about what my life “could” be like if I woke up the next day, and I was STILL a whole person…

TrianglePetroglyphsPhoto: Anasazi petroglyphs  By: capturedbylori

P1080793Photo: Utah Sunset  By:capturedbylori

Ok, I’ll play the game. (Can’t put this on Facebook since I have so few individuals as friends, there wouldn’t get enough answers to make it worthwhile.)

Find the falsehood amongst the following four statements:

1. Delayed Onset Sleep Phase Disorder is often a lifelong condition, originating in childhood, and can be severe enough to cause a lifelong disability.

2. Lupus patients usually have nephrological complications if their body produces anti-double-stranedd DNA antibodies.

3. Autonomic nervous system disorders can be completely overcome if the origin of the disorder is identified.

4. Breast tissue can randomly grow anywhere along the “milk line,” from the armpits, down to the groin area.

*sources: Medscape, NCBI, Wikipedia, Mayo Clinic, Skyscape, surgical texts

I have had DSPS since I was about 2 or three yrs old. Granted, one may surmise that it developed due to the nightly sexual abuse from my biological father. As an incest victim, you develop an odd response to the abuse. I have crystal-clear memories of the events of those nights…and some days…If I was awake, sometimes he would leave me alone. I imagine he had a form of DSPS since he was a classic “night owl” and also had issues with getting to jobs on time – much like I did when I hit the job market. Then, some of my recent research sent me to the human genome, specifically the hPer3 gene (and others), suggesting that there is a genetic cause for this antisocial night owl syndrome. Gee, Dad, I have SO MUCH to be thankful to you for, don’t I? Gag me.

Thanks to this DSPS curse, while I was a kid, I was often “out” of school more often than I was “in” school. But. Thanks to the cursed DSPS, I used to crank out my homework and managed to be a straight A student my entire life, in spite of my “poor attendance.”

Thanks to DSPS, I have had to leave professions I loved (law enforcement, the 7a-7p legal field, biotech), and, I have lost best friends and romantic relationships (because of my “inflexibility, stubborn ways, and always getting sick” to quote an ex-husband).

Society lives under this odd misconception that everyone could be a better person if the just “got up a little earlier!”  Think about the words you hear if you come i a bit late to a meeting, to a class, to a special event.  “You should have got up earlier,” said with the requisite smirky know-it-all I’m-better-than-you-are smile.

Spend a week in my shoes and learn how it just is not possible to “go to bed earlier” so you can “get up earlier.” I have 30+ years experience of taking every kind of sleeping medication on the market (no, not all at once) and not having a SINGLE SLEEPY MOMENT from any of them – or even wore – having a paradoxical reaction to them – getting jazzed, spastic and hyper. It is not a conscious choice, people. In fact, I am REALLY pissed off at YOU, you know who YOU are, YOU, who twisted my arm into trying all the natural sleep remedies that were a monumental WASTE of money (LIGHT THERAPY – REALLY?! What a joke. Put me right back to sleep. In the morning. When I SHOULD be sleeping.). YOU, that insisted that everything would be just fine if I “learned” how to go to bed “on-time.”  ON WHO’S TIME?  And, YOU – who prescribed Ambien, Restoril, Tranxene, Lunesta, Valium, Klonipin, Amitryptiline, Nortryptiline, Trazadone and several muscle relaxants like Flexeril…all to get ME to “become normal.”

Well guess what, YOU?  All of YOU?  I AM normal.

Scientifically documented, peer-reviewed, ICD-9 coded and ISCD defined. And the number ONE way per a person to handle being a DSPS “patient?”  ACCEPTANCE. So, I chose to accept it. For one week, I let myself go to sleep when I was tired, naturally, sans chemicals. I let myself wake up, sans alarms or light boxes.  And guess what!!!! You won’t believe THIS one. I had a GREAT week! I had less chronic pain. I had NO migraines – NO MIGRAINES! (That should be front page news!). I ate normally. I went to yoga cheerfully and came back from class feeling happy!

So, I am now 5 weeks into this ACCEPTANCE phase and loving it – and dare I say, loving myself. Not only have a cleared my body of unnecessary and conflicting chemicals, but I have removed the self-deprecating voice from my head, chastising me for simply being me. I know I AM normal, for me. Whether this was caused by the PTSD from being sexually abused for the first 14 years of my life, or it was because of a genetic anomaly in my hPer3 gene, or other related genes, I am a DSPS sufferer, that is no longer suffering.

By the way, the ADA (effective 2010) recognizes DSPS as a “disability” and requires workplaces to make reasonable accommodations for people with DSPS. In other words, non 9-5 hours. So, when I go back to work, once my chronic neurological issues are under control, I plan to return to work to offer my research skills to the world – while I am at my peak effectiveness, and I can give my employer the most for their money!