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Thoughts from the Dark Side

I’ve been thinking a lot lately about coming to my MAV family with this. It’s so personal as to be overwhelming, but I love you all and I’m working on trust. 5 pm on a Friday following a real bitch of a week and a finger of whiskey and I have fortified my resolve.

Yesterday, at work, I was the unwilling and surprised subject of an excessively public “private” intervention from a crisis counselor and addiction recovery specialist. Honestly, Mortification should be a listed MAV symptom. But, I’m getting ahead of myself.

Remember me, the one who wrote our mildly popular wiki The Emotional Toll? I should have figured that would bite me in the ass at some point. Even I re-read that with fresh eyes on a fairly regular basis. Chronic illness is an extreme sport. We need all the help we can get.

So, what am I procrastinating talking about? Suicidal thoughts. As many of you know, I’ve been on Effexor (37.5 mg XR) for about a year now. It’s a miracle drug. I went from totally disabled to able to run a successful consulting firm. I doubled my business in that time, brought on staff, thrived. There are many side effects, but with MAV the choice is always between the devil in the cure or the one you brought with you.

One thing that’s been really hard on me is the pretty much uncontrolled weight gain. I have PCOS, a poorly named endocrine disorder that does a lot of things - makes most of us obese and robs us of the ability to shift it no matter what we do or how ardently or disciplined or devoted, adds hair where it shouldn’t be, turns our complexions into spotty teenagers, takes away our ability to reproduce, leads us down the road of Metabolic Syndrome. That super highway only has a couple of exits - diabetes, heart disease and/or stroke. Prior to September 2017, I’d been able to keep MAV in check, and PCOS to a background issue with a strict ketogenic diet. Then things went really sideways. While trialing various MAV meds in the spring of last year (Topomax, Ami, a bevy of rescue meds), I held to a strict ketogenic diet. I felt pretty good. My labs were good. My weight, while still obese, wasn’t morbidly so and that’s a feat for a PCOS woman over 40. Effexor stopped that in its tracks. In the year I’ve been on it, I’ve gained 26 pounds and re-gained my loathed Metabolic Syndrome status all while maintaining a healthy, carefully controlled diet and exercise regimen.

The other thing, just as insidious and creeping, were thoughts of suicide. Now understand, I’m an optimistic survivor of a woman. I’m tough both mentally and emotionally. I came from an ugly childhood where suicide was tempting. I spent years sitting against the school walls doing little pro/con analysis about running away, killing myself, sticking it out. Faith said stick it out. Glad I did. I’m successful, married, happy. So, I know this ground.

But, like in the movie Inception, I kept having these little thoughts that felt like my own, but weren’t. You can stop the pain. You can stop the sickness. You’ll never get better. Why suffer? Take all the pills. Wash them down with alcohol. Maybe not now, but sometime. Hoard them. It became a shiny little secret only I knew. A siren call of destruction wrapped in glitter and comfort. Something to take out and look at during long painful nights or when it was the only still thing in a chaotically spinning world. My precious.

Meanwhile, I’ve been slowly falling apart. Sick all of March with some super cold. 17 doctors appointments in April - homegrown pain from my fragile neck and destroyed pelvis (surgery gone wrong), migraine. A trend that continues. Pain all the time. Sick all the time. Baseline - but a baseline while medicated. So a hopeless place. I can’t go up on the meds - I’m already getting sicker, closer to a young death. I can’t stop them because - MAV.

But I did stop them. I stopped Effexor cold turkey a week ago. That folks, is a super bad idea. Detox from this med ain’t kidding. I don’t care. I may be hating on aspects of my otherwise wonderful life, but I’m not hearing the siren call of death like I was. Not that detoxing is fun, but really, it’s just MAV with some new but not that weird features. I mean, I get brain stem aura. I know from crazy symptoms. But now, without it, no one is whispering death in my ear. Even now, divulging the secret is like letting all the fireflies out of the jar. Somehow sad, insane as that is. I don’t care if I have to live uncontrolled MAV. I can handle pain, discomfort, sickness. I love my life, my MAVtastic life. So I’m giving that secret up.

All of which makes yesterday so ironic. I got brave. I told a friend at work. You see, we glorious MAVericks are used to MAV. It’s disabling, and it sounds frightening, but really it’s not dangerous. Not really. Those without our experience and perspective don’t understand. Imagine my surprise and the humiliation of realizing she’d called in the calvary to save me from myself, when I’d already done just that. It was a brave and painful act of love. One I thanked her for. (And saved the crying for later.)

Of course, it took me less than a few minutes to explain and give context. The crisis intervention guy, a nice black man with soft eyes and a kind heart seemed just as embarrassed as me, though I doubt seriously he’s already called his therapist to add a new big T trauma to his list of hurts and fears to work through, like I did. Life is a tragi-comedy and MAV capers and whirls across the stage. Hey, at least I didn’t shit myself in public this time. That gag is a favorite of my friend MAV. This time, I got to demonstrate grace, gratitude, love. I educated. And then I did it again in an email for the larger office, since no one could have failed to witness that public spectacle. I’m a judge. The whole staff had been standing in the hallway after court waiting for it to go down. MAV adding insult to injury. Invisible disability no more. At least with an email, I could take back the narrative, educate, be kind, be loving, demonstrate acceptance, be my higher self calling from a low space.

That’s ok. As many of you know, I have a mantra. When you’re placed in a press and can’t escape you have two options, shatter or be harder than the press. Well, the press needs to up its game. I’m harder. We all are.

I wanted to share this pain for two reasons. The first is to air the secret so it can’t be secret and alluring again, though it costs me embarrassment to do so. The second is to tell you I get it. If you’re hurting, come to us. Let us love you. Let us all be harder together.

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Lovely post Emily which demonstrates strength from a place of vulnerability. Close enough to the public blog we discussed.

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Emily, I admire you.
The dark places we all have faced in varying degrees are hard to talk about, especially since so many of us feel alone or at the very least misunderstood. Who can we talk to? Until I found this forum, I felt very alone in this MAV hell. No one could possibly understand. I’m the first to admit, I would have never understood this disorder had I not woken on January 9th 2018 with my world turned upside down. I’m grateful for each person I’ve met here who give me hope and I hope I can give hope in return.

You truly have a gift. Your wit, your experiences, your struggles, your successes, your talent for weaving your story with sparkling glimmers of humor and hope. Have you thought of writing a book? I’d buy it!

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I would pre-order the book too.

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I already felt so thankful for finding this site but after reading this post that feeling has expanded …you are so strong, please don’t forget to share the link for the pre order of the book lol

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Emily,
Said like a true wordsmith.
You’re so inspiring, to us all.
Your strength is admirable… keep on being your wonderful self :two_hearts:

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A lovely post Emily, you are strong, courageous and an inspiration to many :two_hearts::two_hearts:

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Thank you, Vigs (@GetBetter), Renee’ (@Naejohn), Elaine (@nin), Kirsty (@MNEK18) and Diana (@Diana21). Your words are ever kind and welcome. This outspoken little introvert needed some time after that big exposure to pull it back together for public interaction. Thanks for waiting. I love you guys.

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Flutters,

Hi. I think we may be living parallel lives. I too am over 40, have PCOS, MAV, migraine with aura and deal with the dreaded metabolic syndrome. It sucks doesn’t it?

I also have severe gastric issues from post-op abdominal adhesions & extensive endometriosis that I cannot get help for no matter how many doctors I see. There’s also the bilateral SCDS and PTSD (from my military service). I hope you don’t have the last three. They suck too.

I’ve trialed many, if not all, of the meds and can’t take them due to the obnoxious and in some cases, downright dangerous side effects. I just do what I can to live with the symptoms of everything now.

Many days my life feels like nothing more than inter-looped (is that a word?) Catch 22 scenarios. I want to go for a good cardio walk but the 12” of metal I have in one leg and the 6” of metal in the other hurt constantly and can lock up unexpectedly and if they don’t, then the MAV makes my head feel like it’s floating 2 feet above me and the SCDS makes my visual fields pulsate from the permanent oscilopsia. I use a trekking pole to help me walk but between the ortho pains and the disequilibrium and the unexpected staggering due to loud vehicles that go by (an SCDS symptom), my intended cardio walk turns into a meander that will take 2 hours to recover from. I can’t go to gyms - too noisy, too bright and I absolutely cannot use any kind of cardio machine, even a recumbent bike. Been there - tried all of them. Repeatedly. Within 10 minutes of use I’m staggering to a bathroom to throw up. Walking outdoors is my best bet. So, let’s see - 15-30 minutes of meandering that barely raises my heart rate and then 2 hours of resting to reset my balance system and ice my knees - yeah, that weight loss idea is just that. An idea. Floating away. It’s soooo frustrating.

I go through bouts of wondering if a life such as mine is worth the effort. Stubbornness must be my super power because some days it’s the only reason I am still here. Well, stubbornness, plain ol habit and knowing that I am not alone in my struggle.

I thank you for your post. Thank you for sharing. You’ve helped me.
My best,
Molly

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Molly,

Yep got that surgical adhesion disaster. Had a total hysterectomy in September 2016. That led to massive scar tissue. (Men: look away - girl part discussion coming). Scar tissue is currently glueing together my abdominal wall, large intestine, small intestine, kidneys, bladder, urethras, vaginal cuff, and all my pelvic muscles. Spasms are frequent and painful. It regularly pulls my hips and pelvis out of alignment. It dislocates my pubic bones and coccyx. Digestion is painful because my intestines are strangled. IBS is constant.

The doctor that helped me the most is a manual physical therapist. Remember how women used to get treated for hysteria? (Manually stimulate the uterus (hyster)). Like that, only stretching scar tissue in a really get to know your therapist sort of way while crying in searing pain from the most intimate portion of your anatomy. Totally unqualified worth it. Went from can hardly walk, pain all the time, cry on the toilet, forget sex to a relatively ok, mostly functional human. If my insurance hadn’t cut me off (at 80 PT visits), I’d probably still be ok now. Scar tissue needs regular stretching.

Right now I pay cash to a Rolfing massage therapist to work my abdomen from the outside to loosen the scar tissue. I also see a specialist chiropractor. I’m hoping to stay off the surgery table because that just leads right back here. Plus starting the whole process over is an asinine way to get your insurance to pay for care. I was wearing my brace that holds my pelvic bones in place during the ‘intervention’. It was a straight up can’t catch a break sort of day.

I don’t have SCDS or PTSD. For that, I am grateful.

Have you tried VRT? That made a world of difference for me. Effexor made a difference there. VRT needs a more stabilized brain I think. I admit, I’m concerned about finding baseline and visual vertigo waiting there for me. In that sense, the very severe side effects didn’t always seem so hard.

Life is, and it’s worth saying, entirely worth it. There is much joy and love to give and receive.

:heart: Emily

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If you can tolerate it Propranolol will do it for you. I’m willing it to with all my might. Helen

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I noticed another commentator say propranolol leads to diabetes, something I’m already headed for with PCOS. I’m hoping that connection is slight because I too am hoping propranolol is helpful to me. Thank you, Helen.

Em

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Emily,

Hi. Yes, I’ve been through VRT. With unstable SCDS VRT makes things worse unfortunately. I’m seeing a specialist next month to see if surgery (on both ears, 6 months apart) would be worth it at this point.

Reference the gastro problems from all the scarring - I would go through surgery in a heartbeat. I’ve been dealing with all of this for 20+ years. I did try various types of massage for it. At this time, it’s too painful to continue. Too many things are stuck together.

I wish you well with your challenges.
My best,
Molly

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It was worth the pain of the PT for me. Lots of visits, lots of pain, lots of indignity (no matter how hard we all worked to pretend that having someone else doing painful things to you in sex like positions and places is somehow a normal sort of thing), lots of fortitude. But, I can function and that’s worth it all. Helps immeasurably that my PT was a specialist in women’s issues and is sort of a grandma figure, especially that day she reset my coccyx. If I have any modesty left, I can’t find it. I might be personality wise an introvert, but after five years of this shit, I’m basically just do whatever, get it over with and I’ll hit up Starbucks on the way home as my reward.

PS - I’m pulling for you Molly. You’re in my prayers.

Hi Emily @flutters,
Wow… Just wow! That was very honest, raw, and so very moving. I think most of us can identify with these emotions and the public misunderstanding (shaming at times?). I can also identify with many of your struggles, including the basilar attacks and hormonal issues. I don’t have PCOS (that I know of). But I am on the verge of metabolic syndrome, and I have upcoming endocrine appt to try to get to the bottom of it. Possible cushings or androgen excess by remaining ovary are things my Dr mentioned. It’s so very frustrating to be doing everything right, and still struggle so much to have basic things others take for granted.

I want to tell you that I am thinking of doing that genetic test regarding antidepressants. I have always been prone to mild depression and anxiety, having been a victim of very young child abuse. But it was never unmanageable or major until I added some of these MAV drugs to the mix!!! Idk what it is, but some of these drugs do not affect me well. Besides the insomnia and sweating I previously mentioned, Effexor (that I was microdosing) caused me to eat more. Yes, even at tiny dose. I also had fleeting, very “matter of fact” thoughts pop up that suicide might not be such a bad idea. Very nonchalant, casual thoughts- actually quite pleasant. That really sucked because it did help my dizzies and basilar attacks. But I take some comfort in the fact that my healthy sister, who was given a similar class drug wellbutrin to stop smoking, took one pill and thought she would have to call 911 because she was losing her mind and going crazy- complete with suicidal thoughts she’d never had before. Genetics…

Propranolol is an easier drug. TBH tho, it did cause me weight gain, and slightly worsened my depression for the first several months. So keep an eye out. The best drug for me is one with a very bad reputation- klonopin. It calms my anxiety, stops the dizzies, hasn’t seemed to cause weight gain, and has not worsened depression. Sounds perfect!! But it can be addictive as hell of course. Even worse, they may stop prescribing Benzos at some point, which would be very, very bad for me. But we’re all stuck with that conundrum- drug risks/effects or VM symptoms. Pick and choose which is worse. Even my Drs use the term “lesser of two evils” all the time.

I hope you are tapering down off the Effexor… And feeling better. I am not sure of your age, but can the PCOS be helped by ovary removal? My Dr says my remaining ovary might have to go if they find androgen excess. But I am 51…

Hugs​:heart::heart:

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Thank you. :heart:

It takes me a long time to decide to speak up about things. Once I do, I’m always forthright to a fault.

I’m 46. I tried to talk them into taking the ovaries when they did the hysterectomy. No dice. Those stupid things have been nothing but trouble for me since day one. They were happy to take the cervix, though, something I would have rather kept and said so repeatedly. (I have several not safe for public consumption thoughts on that matter.)

I pretty much gave up on my endocrinologist. I’ve tried the gamut of drugs. I’m currently on an anti-androgen - spironolactone. It’s useless. Metformin was the author of much gastric related humiliation. I’m unconvinced the levothyroxine is actually helping my hypothyroid. I suspect it floats around in my blood looking good for the test but isn’t actually contributing much.

The best thing I’ve ever found for dealing with Metabolic Syndrome is dealing with glucose metabolism. For me, that means ketosis. Another excellent resource is the book 8 Steps to Reverse Your PCOS. PCOS is a metabolic syndrome first that affects the reproductive system. I just can’t seem to keep track of the insulinogenic qualities of food the book recommends. So, staying in ketosis is just easier, that is when I don’t have some MAV drug or other (ami, effexor, propranolol) monkeying with my glucose metabolism. I do blood tests daily. I can say for a fact that without meds I can easily stay in ketosis with a stable, low end of normal blood sugar. With meds my glucose, triglycerides, cholesterol and weight spiral upwards uncontrollably and I can’t maintain ketosis even on an all meat diet. PCOS gives you the ability to do the impossible, gain weight without actually eating.

8 Steps to Reverse Your PCOS: A Proven Program to Reset Your Hormones, Repair Your Metabolism, and Restore Your Fertility: Dr. Fiona McCulloch: 9781626343016: Amazon.com: Gateway

I have an Rx for klonopin. I never filled it. Both sides of my family tree are addicts. At this point, I’m pretty much a low key addict myself. That’s the final reason for leaving Effexor, I can’t control addiction like I could. I used to be able to stay away from alcohol, marijuana, my stash of rescue drugs (ie barbiturates), the bread counter, sugar. Effexor steals me of my will power.

I took that back. I didn’t titrate down. I should have. I have a pre-med biology degree and the most amazing informal education since MAV in all sorts of things - organic chemistry, neurology, endocrinology. I know better. I just don’t care. I can’t have whispering death and feel so out of control and hopeless as to have tears right on the surface all the time. I’m too damned proud to cry in public (which means all other humans; product of my own child abuse. Hiding emotions is safety. It’s an ingrained survival habit I can’t shed no matter how many therapist’s couches I’ve graced over the years. It drives the therapists nuts, but there are only so many internal walls I can break down). I can’t hide in the shower to cry all the time. I’m getting all dry skinned. Effexor had to go because if there’s one thing I really hate - it’s skin lotion. Yuck.

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Well yes it sounds like effexor definitely had to go very, very fast. I hope the withdrawals are passed, or will soon.

Funny no one would take your ovaries. When I had my hyster at age 39, they were insistent on taking both since I was done with children. I had to fight to keep one. I was not having MAV or the hormone issues at that time so I wanted to keep the one without cysts. That ended up being fine for years, up until recently. So we’ll see what happens there.

I’m mostly low carb. The migraine diet makes it harder without nuts (which trigger me) and dairy seems to bother me. I’m also allergic to all fish. I struggle to find what is left to eat besides chicken, pork and beef. I have started in with soy free eggs (no soy feed for the hens), and I now seem to be able to tolerate eggs somewhat. I’ve also read about metformin and spironolactone. I don’t like what I read, and prefer to stay away. I agree with Helen that we are being stressed out with dealing with this illness and work, and we need time to heal. With your business and my work, we don’t seem to catch a break. I know we’ve discussed this before- the state of disability here. I won’t rant too much on it, but I believe an ability to rest and focus on well-being/healing for an extended time- without going broke or losing our livelihood- would be most beneficial.

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Preach it. You are absolutely right.

My ketosis menu is rich. That’s true even though I avoid dairy and eggs. I substitute seeds for nuts. I eat a metric ton of above ground veggies, some limited low glycemic index fruits, meat, seeds. I also like several grain substitutes - riced cauliflower, zucchini noodles, miracle shirataki noodles. Except for breakfast, ketosis isn’t all that hard. Start by thinking of stews, stir fry, curry. Use a grain substitute as the base. Add a bunch of veggies, some meat, a simple sauce. Figure out how to make eight of those plus three or four good salads. Eat radishes, cauliflower, celery, cucumber with sunflower butter for snacks. Try kale chips and pork rinds or tinned chicken. For breakfast I just eat a dinner item.

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Good advice. I’ve done most of this, but also have the inulin intolerance ( no chickory root, miracle noodle, Jerusalem artichoke, etc). Guess I’m a hot mess! :joy: But yes on the riced cauli and zoodles! My Dr frowns upon daily meat (even lean), but that’s part of keto. My Dr is trying to tell me keto is bad for heart/arteries. I’ve read some recent studies saying the same, so it’s disheartening. I guess we need to just eat like rabbits.

On ketosis my labs are perfect. Off ketosis I’m sick, fat and dying. I have lots of bloodwork over years to prove it.

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