Meimeiquest: my introduction

[mattinsmom]

Wow, I am gone for a little while and look at all the changes! It is good to see that you are doing well and willing to try the stretch of working in January. Big steps!

I wanted to wish you a very Merry Christmas filled with blessings to you and your loved ones. 

[EternalOptimist]

Happy about your progress M !

[Meimeiquest]

Just writing because I haven't here for awhile. Felt a bit wobbly when I got to 2mg of benzo, so holding. And my husband wisely recommended I be "very, very steady before the final drop." He has listened to me go on so much he is turning into quite the expert.

 

I am still not full-time, but soon, don't know when. Such an organized department, not.

 

The inositol has been strange, like something my body really needed. I am reading about it and PCOS...that is probably why I need it. It feels like I am collecting every physical reason to have mental problems. I try to think daily of the millions who would love to have solveable medical problems!

 

Was hoping that I could handle some kefir and cheese (for the vitamin K2). No, I cannot.

Trying to figure out how to fit exercise in....

 

The problems I have right now would be considered signs of Inattentive ADHD. Time to restart the Adderall....not!

[cymbaltawithdrawal5600]

Well, that sounds like an OK update. Has your dropping of lithium bothered you at all? I notice drops, updoses, drops again. Is it something that does not need to go by 10%?

 

I can fit the exercise in, I just don't do it. But mine is an anger issue and I have not figured out my way around it.

[mattinsmom]

Stopping in to say hello. 

[Meimeiquest]

Hi all, I am just finding this page difficult to write on. But sometime in April three years ago I started this journey off one drug (Zyprexa)...surely had no idea where the path would lead! But I am thrilled to announce that I am DRUG-FREE!!! Six drugs, three years, home free! Can you believe it! Actually, that's a major April Fool's joke..... Here's a funny blog post, speaking of April Fool's, totally off-topic. https://go.madmimi.com/redirects/1427889030-86d94c01fef0e1a6bfb581d938fb6946-773e477?pa=29330687752

 

But all joking aside, I am doing well enough. My stress-bearing capacity is pretty low and my sleep is still disturbed, but I am pretty much okay otherwise. I am still a lab rat for various supplement/food experiments with mixed, but thankfully not disastrous, results. Awaiting labwork for possible progesterone therapy. Failing at exercise because I can't get it all done. But I am working full-time with a jam-laden long commute, cooking whole foods for the whole family, starting the garden, and doing some mandatory overtime doing a nursing procedure that I hadn't done for twenty years at a public figure's home (I got lost the first day and was 20 minutes late to the celebrity's house where my boss's boss was to orient me...I did totally lose my cool on the phone with my husband that day!) at 7 AM Friday through Monday. I am edgy with my family, sometimes overwhelmed, but we are doing it. I am very, very grateful!

[AliG]

     Meimei, Thanks for your comments on my thread.  I just feel torn between pushing myself, and trying to heal. How do you find the balance?   In the last 2 weeks , I have stopped everything.  I'm so scared.  I've become immobile.  (Couch potato  ! ).  I'm not game to do anything .      Hope your healing is going well.        Ali. 

[Meimeiquest]

I saw your post about not sleeping. At this point, you just need to try to be as comfortable as possible. It's a hard time. Have you seen the info on room darkening, avoiding lighted screens after dark, etc? That helps restore the circadian rhythm, which is your greatest need right now. Exercise that makes you feel better is right, if it overstimulates or fatigues, it is too much. What you were able to do before WD is temporarily irrelevant. Gentle exercise in nature is fabulous, barefoot even better. Forest bathing and earthing are words you can search if interested. You are doing so well not to panic in your insomnia.

[mattinsmom]

You're so rockin' it. Look how far you've come! I know you are still a lab rat and that things are far from easy but your posts have changed, your recovery is seen. You, are awesome!

[AliG]

  Forest bathing and earthing, sound so good!  I will look them up .  I'm trying to let the insomnia wash over me at the moment, but it is trying.   I know all about sleep hygiene, and try to do the best I can.  At the moment, I'm in the "tomorrow" school of exercise.  Everyday

I say I'm going to start, but I am always too tired.   I used to be a gym bunny, but  how can you do that, with no sleep or energy.  It's now 6am here, and the sun's coming up and I've been up all night on the computer.   Thanks for your concern and help.  Best Wishes.

Ali.

[Meimeiquest]

You're so rockin' it. Look how far you've come! I know you are still a lab rat and that things are far from easy but your posts have changed, your recovery is seen. You, are awesome!

That's sweet, thanks. I asked the hubs the other day if He thought going off was worth it, He said, "Well, I hope there are some things that are just a stage, but you were just so sedated on those drugs, your personality was lost."

[Meimeiquest]

Forest bathing and earthing, sound so good!  I will look them up .  I'm trying to let the insomnia wash over me at the moment, but it is trying.   I know all about sleep hygiene, and try to do the best I can.  At the moment, I'm in the "tomorrow" school of exercise.  Everyday

I say I'm going to start, but I am always too tired.   I used to be a gym bunny, but  how can you do that, with no sleep or energy.  It's now 6am here, and the sun's coming up and I've been up all night on the computer.   Thanks for your concern and help.  Best Wishes.

Ali.

If you can just stay remotely calm, you're golden. Lose weight, gain weight, do whatever. This a season just to be endured!

[AliG]

  You're so right !   Stay calm &  golden.  I like that.  This is a season to be endured, but to hopefully find some joy as well, in the simple things.  Maybe that is our lesson., for now.   Best wishes for  continued recovery.   

Ali.

[Fresh]

Meimei , I'm so impressed that you're working full time as well as all the other things you're doing.

Have you always been able to work?

 

Fresh

[Meimeiquest]

Hi Fresh, it's been an unusual situation. My problems got serious with a switch from Prozac to Cymbalta, and very long story short I was on the roster to work for an agency but they weren't calling (scheduler was later fired). So I didn't have a big issue the employer, but I didn't work at all for about four months in that crisis, and then just a bit, with great anxiety, for a couple of months. After that I did two to four days/week, depending on the situation. And I told my manager the whole story. But it is private duty pediatric nursing, which is really, rally easy. When my patient is in school, I actually "work" less than an hour and otherwise am just there observing/available, hanging out with my iPad, Because of the contracted rates, it is cheaper for Medicaid to have a nurse there all day then have them come in twice under an "intermittent" contract for the procedure that she needs. At home, I think she has taken some developmental hits from my lack of vitality and "presence.". But this line of work attracts some really pathetic nurses. I felt the subs I trained were half better and half worse than me (mom came home twice to find her daughter who was functioning at about 18-24 months developmentally in the kitchen sink for a bath with the nurse not even in the room, she said she was getting clothes from the bedroom.). So I decided to keep going, because consistency has some value in a child's development. But as I slowly come back to life, I'm going to have to get a real job eventually for my own sanity. But I don't know if I will ever be able to multi-task in the way that many nursing jobs require, and I really disagree with the way health care is delivered in so many areas, I'm not sure how it will turn out. But I have been incredibly blessed to earn as much as I have in the state I have been in, and even though I often failed my little patient, she has done much better than expected.

[mattinsmom]

It doesn't sound like you failed your little patient. You care and that is so much more than most people receive. 

[chia1214]

Blubalu, I agree with Bubble that your feelings are entirely normal. I can't tell you how much it has helped me to read other people's stories here. It makes the world and the impossible task seem smaller. Alto has used a sun icon to mark the threads of people who are improving, so you can pick out encouraging stories. Most likely you will find some that you resonate with. Write a quick note of appreciation on their thread...it will brighten your day and theirs. And if it helps to write out your anguish on your thread, do it. You couldn't have a more sympathetic audience! 

Please do respect the difficulty of this journey...cutting 50% of one drug while in greatly symptomatic withdrawal from another drug is not going to work well. Two months is just getting off the starting line for this race, but it will get easier! 

Hi Meimeiquest, Your quote above to Blubalu was nice. So I am taking your advice and writing a quick note of appreciation on your thread. Your story does resonate with me, I can relate. What I can't seem to do is write much on here. So I'm trying to crack out of that shell.

How is the Walsh Protocol going for you? I read his book, Nutrient Power.

Hope you are having a pleasant evening!  -- Chia

[mattinsmom]

Hi

 

I just want to take a minute to thank you for always stopping by my thread. You've checked on me and been a source of support since I first arrived. So, thank you. 

[Fresh]

Thinking of you today and sending happy thoughts your way (hey , that rhymes!)

 

[LoveandLight]

Aww your job sounds beautiful and I'm sure you have done wonderfully xx

[Meimeiquest]

Thanks, ladies, for your sweet support!

[calithebold]

Thank you so much for your support, it means a lot

[chia1214]

Stopping by to say hi and to thank you for your yahoo on my update.

Wishing you glad spring days ahead! -- Chia

[Meimeiquest]

Tomorrow the hubs and I head out for Chicagoland and Mensah Medical. So I am going to write an update so my perceptions won't be distorted by what they say. I am really not doing so well...but oddly have not had any depression.

 

Exquisitely sensitive to stress (could insert major stories here), and have noticed my pulse stays somewhat elevated long after my mind thinks the stress has passed. I am realizing if my pulse (without exertion) is above 70, something is wrong with me, like I've eaten something I'm sensitive to or stressed.

 

Issue one is sleep. I usually fall asleep pretty easily, but usually wake up after five, six at most hours, and trying to get back to sleep just leads to increasing "inner tension" as Mensah terms it. So since I was waking at 3 a.m., decided to start going to bed at 8 p.m., but it turns out I'm just waking up earlier. Edgy and sound sensitive in the evenings. Although it has aspects of interdose withdrawal, I think it's more like tolerance, maybe, as it is getting worse over time. At 1/20th of my original benzo dose, I don't think dividing it up is going to help a lot.

 

Struggling to "optimize" my blood sugar, as I am gaining, not losing weight. Trying to adjust to metformin. When I am careful about carbs, which is the vast majority of the time, my problem is a fasting blood sugar in the 110's. I think it's a cortisol thing.

 

I had two vitamin B12 levels months apart that were higher than the lab could measure. Stopped supplement and now it's just on the high side. Went to a gut seminar last Sunday and NP said she has the same thing, saw hematologist. He said in the absence of live disease, the cause isn't known. She thinks it is from difficulty methylating B12 to its active form, which is a classic MTHFR problem. But no one thinks high levels are harmful in and of themselves, it just means something isn't working quite right in B12 metabolism. My MTHFR snp's were normal, but Mensah's position is that you can't check just a few pieces of genetic material and say anything definitive, to say nothing of the whole epigenetics portion.

 

Just not getting there with exercise. I have problems with an ankle with any kind of impact, so have to go to gym to use elliptical, and I am just not getting there. Too busy before work, too tired after. Weekends trying to do my house and family stuff. Desperately need to lose weight.

[mattinsmom]

(((HUG)))

[vetdoc]

Meime

Very sorry to hear you are not doing well at the moment.  I hope you get some definitive  answersand  asolid  plan of action from Mensah.  I know about sleep issues all to well and when they arise nothing is more stressful on your emotional and physical state.

 

I was pre- diabetic with morning BG in the 115-120 range.  I had been this way for about 2 years and started a low carb, high protein diet, simialr to Palleo diet about 6 months ago.   I have lost 10 lbs in about 2 months on this type of diet, it's all about  giving up carbs.  It's not easy giving up bread, pasta, potatoes and almost all desserts with sugar.  I try to limit my carbs to no more then 120 carbs a day.  It's hard and a pain in the a#s at first, but eventually with some discipline you do get used to it.  There are dozens of low carb recipes with good things to eat all over the internet.  Whats interesting with very low carb diet high protein diet, you can actually eat more healthy  fats. Without the carbs your body begins to use fat as a glucose (energy) source and burns fat, causing weight loss.

 

I don't know if you monitor your BG  at night before bedtime.  I do and my bedtime BG is lower then my waking fasting BG.  This is known as the Dawn effect, where cortisol rises around 3:AM and liver releases  glucose, but if you have  insulin resistance or the  pancreas can't release enough insulin the fasting BG rises higher in the AM then the  bed time BG.

 

You said you started Metformin to try and get your fasting BG into the normal range.  Metformin as you know has some GI side effects and I found that only the name brand glucophage in the extended release prevented GI side effects.

 

Please let us know how you made out at Mensah.

[Adagiooo]

Hi Meimeiquest,

I hope your trip to Mensah Medical is a good one. On the other hand I'm sorry you're not doing well. You mentioned the possibility of food being the culprit, can you remember anything you've eaten that is not a normal part of your diet...or something you normally eat but you did so at a different time of the day?

 

As for your sleep, maybe the metaformin is having an impact on it. Let's hope it's something as simple as you getting used to the drug rather than anything having to do with the small amount of benzo you're on. I read somewhere that metaformin is supposed to help you lose weight. Could it be your body is trying to find its baseline weight. Of course all of this is just guessing so I hope you get some definitive answers at MM.

 

I hope you find some time for "yourself" to exercise. I know how having extra weight on our bodies can affect us. I'm struggling with the same thing but I know enough about this risperdal to know the weight just doesn't come off, despite diet and exercise, until you get off the drug.

 

You'll get there Meimeiquest. You seem strong and determined. I do hope you start to feel better soon and I'm sending you a big healing ((((((((hug)))))))).

[Meimeiquest]

Hi to y'all and thanks for your kind words!

 

Ok, did I mention I have a lot of inattentive-ADHD type symptoms? To my horror, I got up early this morning and received an email confirming my appt. at Mensah NEXT Monday. What can I say? The docs were enroute to Florida... Anyway, I did get my blood tests which showed mild overmethylation, I think, and that the pyrrole issue is under control at 6, and the copper looked barely okay. I will talk to Dr. Bowman by phone next Monday. I do so hope to have my brain back someday. But I am relieved that the methylation was a bit off, it gives me some hope that things can be fixed and makes me a bit more confident in them as they said at the beginning that I presented by lifelong history/physical symptoms as an overmethylator who had become somehow undermethylated. And then the blood test was normal.

 

Vet doc, that is me exactly with the elevated fbs, usually 105 to 120. I am okay during the day as long as I am careful, but prime rib, mashed potatoes, and three bites of pie put me in the 170's on Mothers Day. Thank you for the encouragement to keep at it, so important for brain health among other things. My GI tract and muscles are slowly making peace with metformin.

 

Skyler wisely said my sleep may be normal for this stage of life, sleeping five hours and then a pause for the "second sleep", just a problem I don't have time for a second sleep. Parenting in old age has some downsides (and upsides). She suggested starting a 0.1mg/week descent from the last of the benzo, which I am starting tonight.

[Meimeiquest]

Well, I talked with the Mensah doctor yesterday by phone. Which was far inferior to meeting in person. She thot my med drop over the past year was a lot. And that my symptom pattern of improvement then losing some ground (although far ahead of a year ago) sounds like a more pervasive problem than just copper, but also other metals. Especially because I have an off and on right upper quadrant abdominal mild discomfort, nl gallbladder ultrasound. Will start their "proprietary" glutathione supplement in a few weeks. But I am slowly stabilizing some anyway, maybe part of it is just lithium withdrawal. I also think the metformin is helping my energy level a bit. She didn't say this, but I know all these symptoms are very possibly just fallout from obesity. How depressing is that?

[chia1214]

Hi Meimei - just wanted to say thanks for commenting on my thread, in the middle of all your busyness and not feeling so great. Keep looking up!  -- Chia

[Meimeiquest]

Just noting that I am well past the upheaval of early summer. I am going to count it as the "crisis" that I found some others faced around the 400mg point with lithium.

 

I am slowly ramping up on my new supplement to promote MT production, going to a chiro to work on my lower thoracic area, a problem for probably 20 years. Many of the nerves that innervate the liver exit from the spinal cord in that area, and I continue to feel that some sort of liver dysfunction is a big part of my story. And I just finished a parasite cleanse. I am not sure what all happened, I tried not to look. Such a yucky thought! But I have a very uncoated tongue now, so hopefully I am beating the candida back. In between tapering and the symptoms that come with each dose increase in the MT Enhancer, I am feeling pretty well. Wish I could sleep better, but I must be doing okay as I can usually go all day until about an hour till bedtime.

 

I am now doing my very final "wave" from oxazepam (hopefully) as I stopped it 8/27. Had been at 0.7 for awhile, did a night of 0.5, one of 0.3, and quit. I admit I taper in fits and starts when I get my nerve up. This round of symptoms is like the others...this benzo taper has been a long series of repeated symptoms unlike the sometimes unpredictable symptoms of the other tapers. 2.5 little gray capsules of lithium are between me and freedom. And soon I can pass a pre-employment drug test.

[toomanymeds]

What are your symptoms now when you taper down? Anxiety or nausea?

Would you recommend Mensah Medical to stablize your system and then continue to taper?

Did their supplements ever rev up you system and cause additional anxiety or nausea?

[Meimeiquest]

Irritability (huge understatement), insomnia, feeling overwhelmed and hopeless, sound sensitivity, fatigue, poor concentration and organization ability and self-control (basically poor executive function), anxiety. Inositol helps my anxiety a lot. I take taurine when my heart rate goes up.

 

Take it or leave it (this is not consistent with this forum) they don' believe WD symptoms last more than a few months, if symptoms persist longer, they believe it is an underlying biochemical condition that they can help. I was pretty stuck about 10 months after stopping Wellbutrin when I went to them. I really don't know what would have happened to me. Tapering still hasn't been easy, but is at least possible.

 

Yes. I have had many symptoms going on Enhancer, a predominantly glutathione supplement. A lot of muscle pain and some anxiety and insomnia. I was supposed to start at 1 capsule and in a month go to 2, instead it has taken me two months to get to one full capsule. The treatment for overmethylation is know to induce anxiety for about a month. When you start the supplements, they give you directions for slowly ramping up. I did have nausea, headaches, and what seems to be discomfort in the liver area. Your issues are going to depend on your problems and treatment.

 

My daughter has been on pyrrole therapy just from a phone consult with lots of problems with headache, "I can't think", and especially nausea. She has never gotten to her prescribed doses. We just had some testing done with another provider, different philosophy, as Dr. Mensah strongly advised us to search out why her pyrrole count was so very high (it is a marker for extreme oxidative stress). She also had to have growth hormone therapy because her growth just stalled when she was nine. Weird and results not back yet. There is a pdoc in our city who has done Mensah training about a year ago, and he recommended this chiro's testing. We are very, very far out in the weeds. But I think we are winning. Which doesn't mean there aren't other very valid and helpful ways to win. If I was starting over, I would try the Wahls Protocol (a book). But it is very diet intensive and that can be hard when one is sick.

 

A sad story from my family who has many members with different mental health issues (my grandmother was ill for many years after her second and third babies, and I calculated once that 20% of her descendants have some sort of problem.). Almost a year ago my nephew went into psychosis. He had mono and had allergic reactions to antibiotics prescribed due to misdiagnosis, and then Prednisone. Pdocs did not think any of that relevant, integrative doc later thought it was a classic Prednisone reaction. Mensah's opinion was that it was from the meds but he needed to get checked out to find if something made him vulnerable to those stressors to respond with psychosis. He wasn't interested. He had a great thing happen in his life and has flipped into mania and is in a wild, unreachable place. I so wish he had looked into it then, as it will be a long, hard road back now. Which has nothing to do with your questions, but I just needed to say it.

[Meimeiquest]

"I just can't ...." Is something I have said a lot out loud and to myself in my long journey with fatigue. Because it is true. But I have started making myself finish the sentence with "and so I take responsibility for it not getting it done and its probable consequences of...." In many situations, the only thing you can say is "and so I take responsibility for grieving that loss properly." But there are some things that I just can't say that with. Like "I just can't get on a schedule that meets my needs or our family's needs, so I'll just accept the consequences of severe health problems from not exercising, children who have never been trained to organize their own lives, my husband's constant frustration over his doing so much housework, etc, etc.

 

Much of my "I can't" in those things is that I have a job with sometimes long, unpredictable hours (although at least no graveyard shifts) and long commutes (3 hours driving yesterday). So I am quitting. "I just can't get a new job because I don't have time to look for one" has to go. My last day will be Oct. 23. I am going to look for a telecommuting position of some sort because our little town has far outgrown its local roads and sometimes it takes 40 minutes to travel 6 miles to the interstate.

 

But between you and me, it's hard to gear yourself up for a job search when you know no one would ever hire you if they could see your medical history.

[Wildflower0214]

So sorry to hear about your job situation. I can only imagine how frustrating that must be to have to find another job. And, I totally get feeling like no one would ever hire us if they saw our medical records. I feel the same way.

 

I admire your courage in trying to get well. I really really hope you continue to make progress and that you get some sort of a break soon.

[Meimeiquest]

TY, WF, but I hope you see how comparatively easy my journey has been. First, I was 45 when my "serious mental health problems" started. I often think how hard it must be for people in their teens or young adulthood when one's identity, significant relationships, and careers aren't settled yet, And I have only had about 45 minutes of wondering if I was going to have to be hospitalized. A few hours one day of suicidal ideation. I never have felt I might die from the WD process. And many people face all of the above every day.