I Didn’t Know I Was Having Seizures

http://michellemasonrocks.blogspot.com/2015/08/i-didnt-know-i-was-having-seizures.html

I’m 41 years old, and for over 20 years, every doctor has told me there was nothing wrong with me, all my labs were fine (I have had SO MANY medical tests!), and labeled me a hypochondriac. My family labeled me a hypochondriac and lazy. I’ve lost count of the number of coworkers and associates who assumed I was a closet alcoholic or junkie (especially when they saw me walk into walls, trip, twitch, stop to think to remember my name or what day it was).

I do not share these labels out of anger or self-shame. I share them for the same reason I wrote this blog- maybe it will resonate with you. Maybe you have been called lazy, a dreamer, clumsy and will read the other symptoms and have an ah-ha moment.

Having epilepsy is a little scary, I admit. You know what’s worse? Having it and NOT KNOWING that you are having seizures. Not knowing really messed with my head, on a daily basis.

The depression, feelings of impending doom, paranoia, delusions, and thoughts of suicide that come with Temporal Lobe Epilepsy (TLE) can be *managed* when you know WHY they are happening. I am amazed that I am still alive after decades of crippling depression and the severe, almost daily, thoughts of suicide. Add in the lost jobs, lost friends, and never knowing what the hell was going on with my body, well let’s just say I had more than one very close call with the exit option. (see previous post, Staying Alive)

And that’s really why I wrote this very intimate glimpse into my life and my body. Undiagnosed epileptics are at an extremely high risk for suicide, and much of that is from the not knowing. If this post saves one life, it would mean the world to me, and I would bare my soul a hundred times over to save them.

Nut Roll Heaven

Nuts are expensive, and with my TMJ, I’m not supposed to eat them. (I really miss nuts, especially chocolate-covered ones.) The holidays are a good reason to treat myself, so yeah, I bought some nuts. 🙂

I’d like my nut rolls to look like this:

http://beautifulmess46.blogspot.com/2014/01/the-best-nut-rolls.html

But the great thing about nut rolls is that no matter what you do, they always taste good. 🙂

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Can you smell the yeast?

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Needs more powdered sugar.

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Crumbs 🙂

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For breakfast, lunch, and dinner.

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If I add too much filling before baking, it spills over, so…

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I use the leftover filling on the finished product.

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I know, I know, stop playing with my food.

Now, let’s hope that Daffy the Duck (and my local squirrel) like my nut roll.

(Photos taken yesterday.)

It helps (a little) to know that I’m not alone

https://edsinfo.wordpress.com/2015/09/21/secretive-guidelines-for-opioid-prescribing-from-cdc/

Under comments:

Dennis Gannon
November 20, 2015 at 6:43 am
My life will never be anything near normal again due to the amount of severe suicidal torturous pain I endure on a moment to moment basis. I have A-Typical Trigeminal Neuralgia, Occipital Neuralgia, severe headaches & migraines, severe tmj and all the ailments attached to them. There is no cure but there are serious brain surgeries that could possibly help or make things much worse. So I am forced to take extended release opioids to ease the pain enough to keep me from being suicidal. Trigeminal Neuralgia is unfortunately called the suicide disease because nearly 1/3 of those with it end up committing suicidal to relieve themselves from the constant intense facial and head pain. I must live my life as still as possible in order to not trigger more pain. I am thankful for the beautiful godsend of a plant called the poppy plant. This plant has been utilized since the dawn of humanity to relieve pain and it actual was called ” God’s Own Medicine” some time ago. To keep humans from this plant, that have every human right to receive this plant is an atrocity and will result in genocide via suicide by those who live with such pain. Nobody asked for these pains and god knows nobody wants to kill themselves to escape those pains. So do yourself a favor and gain some compassion for your fellow humans. Research trigeminal neuralgia, a-typical trigeminal neuralgia, occipital neuralgia and similar neuralgias, so you can gain some perspective.

Dennis Gannon

https://painkills2.wordpress.com/2015/06/06/tmj-and-trigeminal-neuralgia/

November is TMJ Awareness Month

I think awareness months work well when the effort is continuous, which is not the case for TMJ. It was over 35 years ago when a dentist first diagnosed me with TMJ — when only dentists knew about this condition. And today, there are still plenty of doctors who don’t know that this condition exists.

Me:  What do you know about TMJ?

Pain doctor:  Nothing.

Me:  How can you treat me if you don’t know anything about TMJ?

Pain doctor:  Because no one else will.

(Have I mentioned lately that doctors suck? Well, not every single doctor, but most of them.)

http://www.tmjoints.org/proclam.html

September 30, 1997

Mr. FRANK of Massachusetts. Mr. Speaker, I would like to call to my colleagues’ attention the designation of this coming November and all, future Novembers as Jaw Joints-TMJ Awareness Month. In Washington’s world of abbreviations and acronyms, TMJ is not one of the better known. Temporomandibular Joint Disorders are among the more painful, yet least well understood disorders affecting people today. While estimates of the number of people in this country affected by TMJ disorders run into the millions, these disorders are often mistaken for other ailments or presumed to be psychological in nature…

http://www.news-medical.net/news/20150115/Revolutionary-new-solution-for-TMJ-problems.aspx

https://clinicaltrials.gov/ct2/show/NCT02446288

http://strengthflexibilityhealtheds.com/2015/07/30/ehlers-danlos-syndrome-and-dental-issues/

The Mall

I purchased my aromatherapy lotions at the local mall. It’s a really beautiful mall, but I don’t visit very often. The handful of times I’ve been, the mall has never been crowded. During this visit, I was sad to see a few shops boarded up and no longer in business. Makes me wonder how much longer this mall will be around…  Let’s take a tour, shall we? 🙂

There’s a giant balloon in the middle of the mall:

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Because balloons and the Q go together like chocolate and peanut butter. (Hey, that rhymes.)

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The lighting inside the mall isn’t the best, which is why most of these pictures are in black and white.

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I miss bubble gum…

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From the Urban Dictionary:  Bubble Gum. A well-known strain of marijuana. Looks like any old frosty nugs, save it’s smell- which is very sweet w/ a slight hint of lemon and pine. Tastes almost exactly like bubble gum, hence the name. Very strong, also has a nicely balanced high; it’s relaxing but sociable, cerebral but not paranoid, nice body buzz but no couchlock, pretty much just a euphoric, easy high. Usually is pretty expensive but well worth it… Bubble gum is the shit.

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Besides a big balloon (and bubble gum), the mall has cool artwork hanging from the ceilings. (How do they dust the ceiling?)

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Today the merry-go-round was sad and empty…

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And there weren’t any passengers on the train…

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Good thing I know how to look up:

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Some of the figures on the ceiling are upside down:

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Balloons and the Q.  The Q and balloons. 🙂

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Do you take Plavix?

http://www.fiercepharma.com/story/bristol-myers-sanofi-catch-break-plavix-marketing-case/2015-08-25

U.S. District Judge Freda Wolfson partially dismissed claims from Elisa Dickson, a former Sanofi-Aventis sales rep, who alleged that the company told her to falsely promote Plavix to docs. Dickson said she was instructed to promote the drug as better than aspirin for stroke patients, for example, even though trial data showed the drug was not effective for that population. And Sanofi allegedly told Dickson to focus her Plavix sales calls on docs whose patients were mainly covered by Medicare or Medicaid, The New Jersey Law Journal reports…

Wolfson also rejected Dickson’s claims that Plavix was only put on lists of approved drugs for each state’s Medicaid program based on misleading information…

The positive ruling deals a shot of good news to the companies, which have encountered other pushback over Plavix marketing. In 2013, the Department of Justice (DoJ) said it would probe disclosures to the FDA about the med’s effectiveness in certain patients. And two U.S. state attorneys general have alleged in other suits that Bristol-Myers and Sanofi knew–or should have known–since 2003 that some patients don’t get Plavix’s full benefits.

http://articles.mercola.com/sites/articles/archive/2012/10/10/plavix-health-risks.aspx

How in the world can anyone justify the use of a drug that increases your risk of death, and costs 33 to 200 times more than the most common alternative, and to top it all off, call it prevention? It’s really amazing how Bristol-Meyers has managed to pull the wool over everyone’s eyes on this one. Even if you take Plavix alone, without aspirin, you’re still likely wasting huge amounts of money, and, as the new evidence suggests, taking a higher health risk than you would with low-dose aspirin…

In 2000, one of the best articles I’ve ever read documenting the tragedy of the traditional medical paradigm was published in the Journal of the American Medical Association (JAMA). The author was Dr. Barbara Starfield of the Johns Hopkins School of Hygiene and Public Health. Based on her article, I created a headline that has reverberated through the web ever since: Doctors Are The Third Leading Cause of Death in the US. Dr. Starfield’s research documented how a staggering 225,000 Americans die from iatrogenic causes, i.e. their death is caused by a physician’s activity, manner, or therapy…

http://www.everydayhealth.com/drugs/plavix

Common Side Effects of Plavix:

Itching
Eczema
Rash
Head or joint pain
Bruising
Diarrhea
Fever
Skin redness
Taste problems

Serious Side Effects of Plavix:

Stop taking Plavix and contact your doctor if you experience any of the following side effects:

Nosebleed
Bloody or tarry stools
Blood in your urine
Coughing up blood
Vomiting that looks like coffee grounds
Crushing heavy chest pain that spreads to arm, shoulder, or jaw
Sudden numbness or weakness, especially on one side of your body
Sudden headache
Confusion
Vision, speech, or balance problems
Weakness
Fever
Pale skin or yellowing of the skin or eyes
Purple or red pinpoint spots under your skin
Unusual bleeding in the mouth, vagina, or rectum

Get emergency help if you exhibit the following signs of an allergic reaction to Plavix:

Hives
Difficulty breathing
Swelling of the face, lips, tongue, or throat

New hope for people with tinnitus

https://www.consumeraffairs.com/news/new-hope-for-people-with-tinnitus-092515.html

People who have it say it can be excruciating. Tinnitus causes pain and a constant ringing in the ears that makes it almost impossible to concentrate or enjoy a social gathering.

Worst of all, there’s little they can do about it. There are treatments that can help, but no cure.

Now, neuroscientists at Georgetown University Medical Center and colleagues in Germany say they’ve discovered the brain condition that causes it. It’s not a cure, but researchers say it is the first step toward finding one.

Writing in Trends in Cognitive Sciences, the scientists describe how the brain mechanisms that normally control noise and pain signals can become dysfunctional, leading to a distorted perception of these sensations.

Like an electrical engineer, they were able to trace the flow of these signals through the brain to where “circuit breakers” should be working — but aren’t.

Josef Rauschecker, a member of the German research team, says a brain injury sometimes scrambles the sensory apparatus. He says tinnitus can occur after the ears are damaged by loud noise. After the brain reorganizes itself, it continues to “hear” a constant hum or drum.

Meanwhile, chronic pain can occur from an injury that often is healed on the outside but persists inside the brain.

“Some people call these phantom sensations, but they are real, produced by a brain that continues to ‘feel’ the initial injury because it cannot down-regulate the sensations enough,” Rauschecker said. “Both conditions are extraordinarily common, yet no treatment gets to the root of these disorders.”

The researchers believe the key to finding a cure for Tinnitus is repairing the brain’s “circuit breakers,” restoring the brain’s central gatekeeping system for control of perceptual sensations.

Doctors say people who have tinnitus may also complain of fatigue, stress, sleep problems, and anxiety.

You may be at higher risk of developing tinnitus if you are over 65 and male. Also, people exposed to loud noises for extended periods of time and those with post-traumatic stress disorder (PTSD) have higher rates of tinnitus…

The Surgeon

So you say you’re in pain
You’ve done tried it all
and now, quite desperate
into my office you crawl

A haven for lost causes
diplomas on the wall
sad folks in the waiting room
seeking hope, one and all

Meet your savior by default
(hawking questionable results)
an ego with balls
he’s here to enthrall

I’ve got the answer, he says
It’s sharp and it’s shiny
Hard. Cold. Steel.
It’s hypnotizing.

I’ve done this before
I think I’m the best
Put your future in my hands
This is the end of your quest

This story doesn’t end well
as many can attest
But don’t you worry none
the surgeon got a new Corvette

(Photo taken 1/25/2015.)

A Pained Life: When There is No Cure

https://www.facebook.com/markmusheribsen?fref=ts

http://www.painnewsnetwork.org/stories/2015/7/31/a-pained-life-when-there-is-no-cure

Trigeminal neuralgia (TN) is a good example. Although theories abound as to the cause of TN, even the most long lived school of thought; that a blood vessel is pressing against the nerve, is not accepted by many in the neurosurgical community.

Some patients are helped by surgery, but a large portion do not and get little or no relief. In addition, many develop phantom pain — called Anesthesia Dolorosa — which is truly awful and life destroying in its own way…

Under comments:

Raz A month ago

Kudos for you Carol, dealing with TN is heartbreaking. Ive had it for 17 years, had all the treatments available, even went to Pittsburg to the guru who found that a mvd could possible help TN. Ya know what? Ive got it still, and at times is unbearable. Was on opiate/opioids for 14 years, which admittedly help, but the cost? Until the change in scheduling I had little problem getting my meds; But after one drs visit, and knowing my meds were going to be titrated down, had my one and only panic attack right in his office! Ya well, he asked why my bp so high and what accounted for the state I was in? I blatantly told him YOU!. Needless to say he fired me next day, ANd wrote I was a drug seeker in my charts for all future drs to see, along with broke my contract? Huh? Sooo. now after withdrawals that almost killed me, I am here 14 months later in pain and blacklisted. Who knew? …

Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)

http://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

(4/3/2014) POLICY INTERPRETATION RULING

PURPOSE: This SSR clarifies our policy on how we develop evidence to establish that a person has a medically determinable impairment (MDI) of CFS and how we evaluate this impairment in disability claims and continuing disability reviews under titles II and XVI the Social Security Act (Act)…

People with CFS may have co-occurring conditions, such as fibromyalgia (FM),[17] myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis,[18] Raynaud’s phenomenon, migraines, chronic lymphocytic thyroiditis, or Sjogren’s syndrome. Co-occurring conditions may also include new allergies or sensitivities to foods, odors, chemicals, medications, noise, vibrations, or touch, or the loss of thermostatic stability (for example, chills, night sweats, or intolerance of extreme temperatures)…

Smile, Halloween Is Here!

I’m having trouble with my internet connection again, so I’m forced to entertain myself.  (Today’s self-entertainment is brought to you by Verizon Sucks, a frequent theme on my blog.) And today, I’m lost in random thoughts about Walgreens, America’s legal drug dealer…

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Walgreens caters to our addictions, whether we need vitamins, other-the-counter medications, sugar/salt, alcohol, make-up, caffeine, cigarettes, or those requiring a doctor’s approval. (CVS is the same; just without the cigarettes, but with the nicotine patch.)

When I required drugs which needed a doctor’s approval, I had health insurance to help me find the care I was seeking. While it’s true that medical services offered on a cash-only basis can sometimes be suspect, there are plenty of doctors who no longer take any insurance — and not because there’s something shady about them. But there’s also plenty of scammers pretending to be doctors — and more often than not, they’re cash-only businesses. I would think most doctors practice above board, but even with the fountain of information on the internet, you won’t know if a doctor is right for you until you see her face-to-face. Unfortunately, you have to pay for that privilege, at least in the U.S.  But I guess patients everywhere would complain about their lack of access to the doctors they would choose to see.

I’m not sure I can say the same for pharmacies which only accept cash, but that’s only because I lack experience with that issue. I’ve used various pharmacies over the years, but the majority of that time, I was a monthly customer (with an insurance card) at the Walgreens pharmacy counter.

Now I just visit pharmacy counters to pick up my Claritin-D, which I have to do every 10 days, because… the drug war. At least I don’t have to pay a doctor to get treatment and relief for my allergies, but I know many people do.

The Walgreens pharmacy counter lost a good customer when I stopped taking prescription medications. But the loss of one customer is nothing to Walgreens. It’s not even a drop in the bucket. Maybe I’m more like a speck of dirt… just one customer out of millions.

But fear not for Walgreens, because the store also carries Russell Stover’s chocolates, one of my addictions. Not the kind of candy you can get every day, but all of my holiday favorites. The season goes like this: Halloween, Thanksgiving, Christmas, Valentine’s Day, and Easter. Then there’s a HUGE amount of time when there is no holiday candy whatsoever, and you have to wait for Halloween again.

And my first sign of Halloween candy at Walgreens happened this week!  (See featured photo.)

I know, it’s exciting!  (Try to control yourself.)  I have little money for luxuries, although this chocolate is more of a necessity. I’ll (try to) follow the same rules I use every season: you’re allowed any product that has dark chocolate; do your best to stay away from the nuts, they just get stuck in your teeth and make your jaw hurt; not too much caramel, it’s bad for your jaw too; and you’re allowed to try any new flavor, even if it’s covered in milk chocolate, has a lot of caramel, and maybe even a nut or two.

It just occurred to me that I may like making rules because I like to break them. 🙂

Can you smell the chocolate?

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Wanna get your brain zapped?

http://www.medpagetoday.com/Blogs/CohensBrainBits/52640?xid=nl_mpt_DHE_2015-07-18&eun=g875301d0r

Tinnitus is one of the most common neurologic conditions, affecting 15% (45 million) of the U.S. population, according to the CDC. Commonly described as ringing in the ears, tinnitus can be any phantom sound, including roaring, hissing, or clicking.

Current treatments, including medications, hearing aids, sound therapy, behavioral therapy, and lifestyle modifications, have limited and inconsistent efficacy. As a result, 67% of those suffering from tinnitus report symptom duration of greater than a year, 26% have constant or near constant tinnitus, and 30% describe their condition as a “moderate” to “very big” problem in their lives…

The study looked at repetitive transcranial magnetic stimulation (TMS) therapy for those suffering from chronic tinnitus. TMS works by inducing an electrical current within the brain corresponding to the rate of change in magnetic field produced by the magnetic coils within the TMS device.

Did you get that? Or do you have to be a physicist to understand what they’re talking about?

An increasing number of neurologic and psychiatric conditions are being studied for treatment response to TMS, and TMS is FDA-approved for the treatment of both migraine and depression. There are more than 10,000 studies looking at TMS as a treatment modality, and in 2014 they were being published at a rate of 24 papers per week.

Over the past few years, otolaryngology has jumped on the TMS bandwagon and numerous researchers have sought to determine whether repetitive TMS (rTMS) could be a viable treatment for tinnitus. Results have been rather mixed…

One of the biggest problems is measurement. Tinnitus is most commonly a subjective condition, making it very hard to compare severity between patients or measure change in severity within a patient. A number of tools have been developed to standardize assessment, measure disability, and evaluate treatment outcomes including the Tinnitus Handicap Inventory, Tinnitus Questionnaire, Tinnitus Severity Index, and Tinnitus Functional Index (TFI), among many others.

One problem of studies thus far has been the choice of test – some have chosen only one of these assessment tools, others have not used a test at all, relying on visual analogue scales or numeric rating scales to measure tinnitus severity…

The greatest reduction in TFI was at the 26-week point. The active rTMS group experienced a 30.8% reduction in TFI at 26 weeks compared with only a 7.1% reduction in TFI for the placebo group. However, other measurement tools did not demonstrate a significant change, suggesting that TFI may be a more reliable tool to assess treatment response than other modalities.

The jury is still out on rTMS as a treatment for chronic tinnitus, and larger sample sizes studied at multiple centers for longer periods of time will help sort out whether this option is really viable…

https://www.psychologytoday.com/blog/struck-living/201306/tms-or-ect-mental-health-consumer-weighs-the-options

First, a layperson’s explanation of each therapy might help. TMS uses magnetic coils to create electrical currents that stimulate the brain. A TMS patient will usually have 20-30 treatments. In the first treatment, the patient has a slightly longer session (1.5 hours approximately) followed by 5 days a week for 45 minutes per session. Dr. Oz did an episode on TMS…

On a sheer treatment basis, TMS is clearly less expensive than ECT. These prices vary by provider, but TMS is typically in the range of $400-500 per session for a total cost of about $15,000. ECT around $2,500 per session, $25,000 for ten sessions, plus the cost of one week hospital stay in some cases…

The most common side effects of TMS are scalp irritation or headaches, but these usually subside within the first week. With ECT, headaches and muscle aches often occur. Some complain of cognition issues up to one month after the last treatment. Typically short-term memory is impacted during this month period, but most patients feel functioning is back to normal within six weeks. Some patients complain of long-term loss of some autobiographical information, but these are in the minority. In my travels talking about my book, I have found people who claim their memory has improved with ECT…

Poo Poo

Besides Sleep Ambivalence and insomnia, I am now also suffering from sleep apnea.  How else would you explain being startled awake by a loud snorting sound?  It’s not like I can blame it on the pet pig that I don’t have.

Maybe I’ve always suffered from this condition, or maybe Tess gave it to me, but it seems to have gotten worse.  I didn’t have or notice this problem when I was smoking bud or taking medications.  And now that I’ve diagnosed myself with apnea, my Sleep Ambivalence has also gotten worse.  It’s a little scary thinking that while I sleep, I stop breathing.

A CPAP machine will not work for someone with severe facial pain, and I have no access to medications that might help.  So, it looks like I am doomed to keep suffering.  But don’t worry, you can’t die from sleep apnea, just like chronic pain can’t kill you — at least right away.

CPAP machines: Tips for avoiding 10 common problems

http://www.mayoclinic.org/diseases-conditions/sleep-apnea/in-depth/cpap/art-20044164

(Photo taken 3/27/2015.)