Meimeiquest: my introduction

[Meimeiquest]

Thanks for bumping...I am really random around here right now. I have 2 girls at home, so doing the Christmas stuff. Touches a hamster for the first time today... I am tapering Toprol-XL right now...it is just like a psych drug to me. Then oxazepam. Going through a new round of diagnostic workup with new pdoc. Probably going off lithium by taper or switch, not clear yet. And yes, we are twins...give me two fibro suggestions and I'll try to think of two . Merry, Merry Christmas!

[Meimeiquest]

Such a weird Christmas as this is the second one tapering. I woke my husband up early, told him I'd been up hyperventilating half the night and I needed some help (I am not sure how I threw myself out of whack so badly starting the 23rd); he said "We just can't go on having Christmases like this year after year. We have got to find a better way than this slow stuff." I said, "What do you suggest?" He said, "I don't know, but I'm going to find something." I guess I'll be in detox soon. Lucky for me his bark is stronger than his bite.

[Meimeiquest]

I am anxious enough to be homebound....but working and trying to be generally responsible. Saw pdoc yesterday...,she checked my reflexes because I was wound so tight. That is part of my problem....so anxious about doctors, magnified by sounds in waiting room...someone had the nerve to chew a cough drop and someone else was so audacious to turn pages of a newspaper. Things I would not have even heard in the past. You get the picture. Anyway, if I could tolerate any dose of magnesium, what would you suggest? I am on 400 mg of the NOWStuff now.

[Altostrata]

Sorry to hear, meimei. I find mag glycinate to be very gentle. You might want to take 25mg to start.

[Meimeiquest]

Well, I'm already taking 400mg. I think it's a mix of citrate and glycinate. But I'm feeling better now...not good, but tolerable. The dr. Thing is just 24-36 hrs. of distress. Fear that if I don't analyze everything right, I or the doc will make a bad decision. Can't imagine where that came from. Like that could ever happen, lol.

[Meimeiquest]

I think I figured out the problem as to why I am climbing the walls, so long after switching to DIY benzo. I made a few dry cuts before, re upped to the original dose when Toprol-XL went weird. But from that I know that I will be dropping at most in 1/60th increments. So today I reviewed my DIY process, decided to mix just one day. When I drew up the day's oxazepam, I still had a little liquid in the bottle. I use a graduated cylinder (it's too hard to focus well enough to measure syringe-fulls) to measure the water, and I take the solution out in syringes. They must not be calibrated exactly the same. Then there's always going to be a bit of potency loss, so I may have taken a 1/30th cut or more. So I feel much better now in my craziness. Hardest part of tapering: Keeping your wits about you.

[Altostrata]

Right, as Rhi observed once, it's more important to have a consistent method than an absolutely precise measurement.

[Meimeiquest]

Well, today is my one year anniversary on SA. First, middle, and last, my heartfelt appreciation goes out to Alto, the mods, and everyone who writes out their journey, and all who write to encourage each other. Apart from work and family, this is pretty much my world...much as I hate that.

 

This has definitely been the hardest year of my life (although some shorter intervals have been worse). I feel like I am finally making some progress in a root cause in uncovering some sort of metabolic methylation issue in my recent anxiety. I also read of someone who had a long-lasting anxiety from methyl folate and she ended up having a problem in breaking down catecholamines, which includes norepinephrine. Both the ADs that made me "crazy" were, among other things, norepinephrine re uptake inhibitors. We can hope.

 

Off to pick up a kid....the story of this chapter of my life. Thanks again everyone!

[mammaP]

I am so glad you are finally getting there Meime,  this place is  a life saver for many of us and I

don't know how I would have coped without it ! 

 

It's great when you find out what is going on in your body and you can do something about it,

even if that is nothing. I know that reads all wrong but you know what I mean.  

Onwards and upwards, things will get better and better 

[Nikki]

MQ can you please explain the root cause of the anxiety.....I did not understand any of the terminology...

 

Glad you are getting there....and thank you for all of your posts and replies:)

[Meimeiquest]

Nikki, I don't understand very well mysel. Alto started a thread on b vitamins and methylation with an article by Dr. Kelly Btogan. It references another website, www.mthfr.net. Somehow I got to another site that talked about an anxiety reaction to the treatment for MTHFR problems being caused by another genetic mutation.

 

Dr. Fuhrman in Eat to Live says there are thousands of genes that govern cellular metabolism and nearly everyone has some abnormal genes in there. He thinks eating only highly nutritional, plant-based foods will supply enough nutrients to overcome those, along with reducing chemical exposure from the environment. So I am hoping to try that (except for the vegan part, I'd never pull that off) for six months and see how it goes. The doctors and testing for this stuff is beyond our budget right now.

 

So I had liver for lunch, marinated in lemon juice and sautéed with onions in coconut oil, with guacamole on top. It was gross...and the best liver I've ever had. Do not like liver!

[Nikki]

MQ your first paragraph has me stymied However the good news is I understood the second paragraph and laughed out loud over the third paragraph

 

I cannot do vegan.  When I was juicing in addition to eating I felt better....so maybe I should jump on that bandwagon again...

 

Hugs

[Meimeiquest]

Can you find the thread that Alto posted on methylation? You might find it interesting. It explains this much better than I could. It is pretty much rocket science to me.

 

I cannot see how juicing and coconut oil could hurt any of us (apart from detox reactions, which I had last spring so I am going very slow).

 

I hope you find an anxiety solution very soon! It really sucks!

[Meimeiquest]

Interesting trip to the pdoc today. She had my genetic results from Genecept. Bottom line was she said she didn't think before it was a good idea for me to go off meds because she saw how sick I was, but the upshot of the testing is that I am genetically primed to do poorly on psych meds and to have a hard time getting off, so she thinks the best thing is for me to get off everything, including lithium. My husband said, "But what about the way she just changes her drugs by herself and diagnoses herself?" (Who me?). And she said...that's just what she needs to do.

 

As far as the methylation issues, she was just at a four day conference on it ( probably sponsored by the maker of Deplin), but she thinks liver and greens is where I should be right now.

 

Most validating point...I am an ultra-metabolizer and Wellbutrin is an inhibitor, and she said the oxazepam metabolism definitely changed when the Wellbutrin was stopped, it wasn't just my imagination, and taking it ten times a day is totally appropriate.

 

Now I must say I don't think anybody is genetically designed for psych drugs or has to feel invalidated in withdrawal... I am just relieved to have a doctor I think I can work with.

[Altostrata]

Good to hear this doc is open-minded, meimei.

 

I have my doubts about "personalized medicine," psychiatry fad of the moment. Which of the genetic test results did she think was significant?

[Wolfhound]

Was it cyp 450?

[Meimeiquest]

CYP450 system refers to an enzyme system in the liver that breaks down some meds, among other things.

 

I wrote above about dr. before I really read all the info. Have to say I don't get the drama of it all, but if she's happy with me going off meds, great. Or worst, if she made it all up cause she knows I'm going off anyway...I could live even with that.

 

I was ultra rapid for CYP2D6, extensive for CYP3A4 and CYP2C19, Val/Met for COMT (don't understand), heterozygous for SLC6A4 (a serotonin transporter)--poss. problems with SSRI's, associated with lower stress resilience, homozygous for 5HT2C (increased likelihood to eat more on antipsychotics). At least they were free...she has an arrangement with Genecept that they.accept whatever insurance pays as full payment.

 

Also, she said in people with BMI over 30, that would be me, substances in fat cause inflammation of the blood-brain barrier, allowing more things to cross the blood-brain barrier, and making CNS adverse events more likely.

 

Probably the biggest gift she gave me yesterday was having us wait an hour in the waiting room. I have been SO anxious lately at my two doctors'. But...if you sit with it long enough, anxiety will dissipate, and I finally got to sit it out.

[Altostrata]

Rapid metabolizers tend to get over-medicated as doctors will load up more and more drugs on them, not seeing much effect. This can indeed endanger the patients.

 

The rest -- I don't know. As I said before, these "personalized medicine" tests are a fad. Psychiatry keeps seeking tests to fit the biological model. There's a lot of post-hoc rationalization, as you are seeing with your doctor.

 

But, at least she's cooperative....

[Meimeiquest]

Thur. I woke up with this certain sedation that tells me something needs cut, so I started dry-cutting 100mg out of AM lithium....felt like a dive off the high board. Nothing on day one, tiny twinges of anxiety on day 2, sudden onset of nausea (a new kind), anxiety, sound sensitivity, headache on day 3. But only lasted about 30 min, then a milder round in the p.m. So I have backed off to make a suspension. I am planning to rotate reducing lithium, metoprolol, and oxazepam. I guess I will make up the timing and amounts as I go, probably leaning towards smaller, more frequent cuts. My husband wants to know if this will take till 2020...I haven't projected a thing. One thing I have learned is that this is not a predictable journey.

[Altostrata]

Is your doctor advising you on the lithium taper? Please add any tips you have for tapering lithium to http://survivingantidepressants.org/index.php?/topic/2976-tips-for-tapering-lithium/

[Meimeiquest]

She said she thinks it is disturbing my thyroid function (despite TSH of 1.4....although in 2009 functional doc said I had many symptoms of thyroid problems but perfect labs) and she thought it would be tough. That's it. But hopefully I can learn more in next visit. She told me at a previous visit that she hates lithium, so hopefully she knows something about taking people off, not just switching them.

 

I suspect glutamate will be the issue as lithium did calm the wild anxiety I had in 2006 after going off Cymbalta 120mg to 60mg to 30mg to 0.

[Altostrata]

So lithium calmed Cymbalta withdrawal? Interesting.

 

Yes, you might want to taper lithium more gradually.

[Meimeiquest]

Today was sort of a red-letter day for me. Working in various stages of cognitive function has always left me with an unanswered question...if there's an emergency, will I be able to handle it? Today an emergency happened...and I handled it.

[JanCarol]

Wow MeiMei!  Hi!!!!!!  I finally made it over to your story to learn about you and your journey! 

 

WOW you've already started the lithium taper!  I look at my skin, hair, nails, and skin again, then listen to my heart beat and think:  I can't wait to reduce this stuff!  TAKE CARE with that, it's nothing to be messed with.  I've decided that it would be okay if I were just on 1/3 to 1/2.  If I have to be.  That "neuroprotective" thing is a huge selling point.

 

I'm glad to see you are on coconut oil, too.  THAT's neuroprotective too!  (as is cannabis, but I shouldn't talk about that one)

 

Such a conundrum, the coconut oil.  My pdoc says:  bad bad bad!  My GP says: bad, bad, bad!  I cannot find ANY health practitioner besides naturopaths who will tell me otherwise.  But when I take it, it tastes and feels so:  good, good, good!  I find it hard to believe that something so good could be so bad!

 

Here's a story about coconut oil:  my cat has herpes of the eye.  Commmon condition, and like bipolar, the more she has outbreaks, the more risk she has of becoming blind.  So the vet gives me an ointment to put in her eye when we have outbreaks.  It's a cortisone / antibiotic ointment.  We put it in 2-3 times a day.  And the outbreak - which can last forever - is shortened to a week.  Well, the last outbreak, we ran out of ointment.  It was a weekend, couldn't get to the vet.  So I took some solid coconut oil on a Qtip and melted it on her eye.  We did that twice.  It was cleared up in 24 hours, and she hasn't had an outbreak since (that was about 10 months ago)

 

Antibacterial, antifungal, antiviral.  Amazing stuff!

 

I looked at your Page diet.  This is the stuff my pdoc talks to me about.  Eating better, living healthier, etc.  And she says 90% of her patients are not disciplined enough to get off the meds successfully.  I looked at the Page diet and nope.. Not only am I not disciplined enough to do it, I don't wanna be!  

 

Well, I'm off to have my Thyroid tested.  I'm excited about that, too.  Maybe there's hope, after all!  

[mammaP]

Today was sort of a red-letter day for me. Working in various stages of cognitive function has always left me with an unanswered question...if there's an emergency, will I be able to handle it? Today an emergency happened...and I handled it.

Fantastic news Meime, Well done  

[cymbaltawithdrawal5600]

Hi meimei,

 

Just wondering how you are doing, haven't seen any posts from you in a long while. Hope everything is ok with you.

[Meimeiquest]

You're so sweet, CW! I am doing better. Less anxiety means less running at the mouth . I am tapering tiny bits, cycling through the three drugs I have left. I just drove from TN to CO and back alone for my aunt's funeral and unexpectedly my dad's TURP turned into the discovery of terminal cancer (he had a bad head injury 16 years ago)...and I'm doing okay. So I am blessed. These drugs seem to be acting in a normal way, unlike the crazy Wellbutrin. I have confirmed by way of multiple fast food meals that I really do need a whole foods gluten-free diet. I'll be by your thread when I get settled...hope you are doing a bit better!

[lexicon]

Welcome back Mei,

 

Your absence was felt around here ..

 

Thinking of you, and hoping that your taper is going smoothly, and that you are feeling well.

Wishing you a peaceful, and blessed day

Love, Lexi

[cymbaltawithdrawal5600]

thanks for checking in meimei!

[Meimeiquest]

Well, I have to tell the truth...I am struggling right now. It is killing me to be away from my dad, although I know he doesn't need me. He was a farmer as I was growing up, and we used to sit on the tractor fender, over the big tire, with him. I just want so bad to go sit on the tire beside him as he makes his final turn around the field. There is nothing more to say, I just want to be with him.

 

I was hoping we could go back during school spring break next month, but that idea was vetoed. Today my mom says she thinks he'll be gone before then. Amazingly, this is my first time to lose someone really close to death. How much grief feels like depression. It also hits me that my level of psychological distress is very similar to where I was a year ago. And my normal withdrawal self feels so much better than that now. Also, the grieving process has greatly increased my normal withdrawal symptom of sound sensitivity. All in all, a normal loss experience. It seems like many people on this board experience loss of loved ones during withdrawal.

[mattinsmom]

I am sorry to hear that you are experiencing such a significant loss. Grief is a painful process. My prayers and thoughts are with you. 

[bubble]

dear Meimei, thank you for sharing this experience with us.

So sorry for your loss on top of WD.

 

Big hug,

bubble

[moodyblues78]

I`m sorry about your loss meimei. 

 

I lost my father years ago. We were not on good terms but I have some good memories to carry with me. My wife lost her father when she was 16. They were very close. Cancer sucks.

 

You`ve got good memories. Cherish them  

 

Hugs from the cold Scandinavia.

 

MB

[mattinsmom]

There is a uniqueness that comes from "prolonged grief". When someone you love is dying, and you know it is going to happen (you're waiting), a person starts to experience grief but not as a full experience.

 

As your body, brain, emotions, are on stand-by, the chemicals released are more steady. There really isn't a break. You're on high alert status all the time.

 

Emotions can get really big. Other symptoms can be triggered more easily. It is important that you make an extra effort into caring for your health and be gentle with yourself.

[Nikki]

MQ I am so sorry for the loss and your dad's illness.  These are difficult and significant losses.  Please just be good to yourself.  Whatever emotions come up remember they are not Neuro-emotions, they are real and let me come up, knowing they will ease in time.

 

You have lots of friends here that you can talk to either in your posts or private messages.  Sharing grief helps alot.  It is a release.

 

Please feel free to contact me at any time.

 

Lots of cyber hugs for you today

[Meimeiquest]

Thanks for your sweet messages. They help. I know this loss is much less severe than many losses...I just need to let it be what it is. And there is no doubt that I take life harder than the average person on the street, but I know you all know that is not a disease, it's just how some people are put together.