Meimeiquest: my introduction

[Nikki]

I know that I am wired that way too...

[JanCarol]

Aww MeiMei, I'm so sorry about your Dad.  I know too well the feeling.  My Dad died while I was 14,000 miles away and I didn't even know.  Nobody called, I found out when the condolences started pouring in on Facebook.  It's my own damn fault for not hovering over my pesky email to see if someone real had written (that's almost rarer than a letter in the post).  And now, my Mom, who is healthy but aged and wobbly - and I can not get news of her doctor visits, her meds, the normal things I would pay attention to if I were nearby.  Last I heard she was upset about her thyroid, having a reaction - but - she is also on Lexapro!  Think there might be side effects there?

 

Anyhow, I digress, I really feel for you not being able to be there for your Dad.

 

And how is the lithium taper going?  Do you have a plan for if/when the manic hits?  You are 4x more likely to experience "manic" upon withdrawal from lithium than you EVER were before you went on lithium.  Please put a plan in place, talk with your family, tell them the signs, have them help you get help - and WHAT KIND of help (i.e., gotta stay out of hospital!)

 

Thinking of you, I imagine the wildflowers are starting in Tennessee.....

[Meimeiquest]

Oh, my, JC....you have had a much rockier road than I have in losing parents! Plus I have 2 sisters in my parents's town. I did learn two things in my 4-day depression over the situation: (1) my usual messed-up state is not depression, this felt very different (2) when you are depressed, you really lose the ability to fight it. It's a sort of catch-22. But it passed.

 

Being away, I don't see my dad's deterioration, I can put it out of mind a little too easily. Biopsy results from the prostate were that the cells were not from the prostate, but were so abnormal the source could not be identified. We know he has mets to the lungs, liver, and bones. Probably the biggest obstacle in his care is to get everyone, especially the doctor, to understand that when someone enters the room, he is going to light up, greet warmly, and when asked, reply that he is doing great and deny pain....no matter how he feels. He has done that his entire life, no matter what physical or mental anguish he is in.

 

If I get manic...first I would treat it like any other serious withdrawal problem and bump up the lithium dose, if that didn't work I would bump the benzo to buy me a little time and spend the small fortune to really investigate the methylation cycle, I would try the diet from psycheducation. Like you, I love and hate that dr.....he is a major propagator of the antidepressants unmasking bipolar theory...people just "switch" from unipolar to bipolar, yet it is so clear that he really cares about bipolar patients. I know in theory I wouldn't be able to reason in mania, but with what I have had in the past, I was very able to. What I fear is that I will go through all this....and still just be exhausted to the point of debilitation. My lithium WD symptoms now are anxiety, insomnia, some nausea, sound sensitivity...none are constant, even on the days I go down into WD. And as always, I am tired...don't know if that is WD or not. If I have to take a drug, I guess I would try what my dad is taking....wild horses couldn't make me take an antipsychotic..

 

Anyway, thanks for your note. I always enjoy your thread....the lithium girls....heavy sigh.

[Zoe]

Hi Meimei- Just wanted you to know that I'm sending thoughts & prayers also. Take care...

[mattinsmom]

 

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  

 

Yes, Well done indeed!

I want to write more about lithium as it was such an experience for me but tonight I am too tired. However, water, water, water.

[JanCarol]

Oooh!  Awesome advice Mattin's Mom!  I look forward to hearing your lithium journey / wisdom.

 

You are lucky MeiMei that you have benzo's available to you.  When I asked my pdoc to consider a script for strong valium - just 2x a day for 10 days - 2 weeks, she looked at me as though I'd grown a third head!

 

And your dad - MEN!  When will they learn to tell us what is going on? It must be hard to care for him if he's keeping his chin up and denying that there's any pain.  Maybe I'm such a wimp that I could never "be a man" like that!  It's good that you can get news from your sisters, but I understand the cotton wool from the distance.  You know with your mind that he's got troubles, but you cannot feel them because he's half a country (or a world, in my case - but it may as well be the same) away.

 

So I will add to my regimen, and remind you too what Mattin'sMom says:  water, water, water, water.  Next best thing to dialysis!  

[Petunia]

Hi Meimei,

 

are you still taking niacin?  I read a post where you wrote that it was really helping, and another one that said it didn't do anything, I may be getting confused though.  If it did help, at least for a while, what did it do?

 

Petu.

[Meimeiquest]

Yes, I still take Niacin. 250mg at bedtime everyday. Usually not anxious now, but I take about 100mg If I am. Once in a while I "over methylate" from liver and take it then. Have anxiety if I forget magnesium. Now experimenting with l-theanine to help anxiety from Beta-blocker taper. Supplement is too much, started drinking lots of green tea yesterday. End of supplement report

[Nikki]

MQ....what does the niacin do?  Is the lithium taper like all of the other drugs we taper....in terms of WD.

 

Hugs

[Meimeiquest]

MQ....what does the niacin do?  Is the lithium taper like all of the other drugs we taper....in terms of WD.

 

Hugs

Per Ben Lynch, niacin makes it easier for GABA (calming neurotransmitter) to cross the blood brain barrier, and it can dampen adverse events from methylation (there is a thread called The Importance of Methylation and B Vitamins). I tried one dose when I was tapering AD and it did nothing, but seems to help now. Whatever

 

Lithium is a drug in its own class. It is really hard to find tapering info, but some people have gotten themselves into real trouble with suicidal depression or mania-type symptoms. But I'm not nervous at all

[Petunia]

Thanks Meimei,

I ordered some niacin after reading about it.

[Meimeiquest]

I forgot to say SLOW-ACTING

[JanCarol]

Thinking of you, MeiMei.  

 

Do you also take GABA with your niacin?  I was taking it some time ago,(on suggestion of my pdoc), but let it go.  I'm on lots and lots of niacin, which I started for cholesterol management (it boosts "good" cholesterol), and then found out on this site that it's good for brain, too.

 

So the GABA, are you just talking your native enzymes from food?  Or do you supplement that too?

 

Hope this finds you enjoying the spring!

[Meimeiquest]

Well, I have not written here for awhile...seems I am better at crashing other people's threads. Sorry, JC, just saw the note above...I haven't taken GABA, maybe I should. I really feel stuck...my intuition, which may or may not work, is screaming that there are other things to be taken care of before I can safely taper further. I upped the lithium a bit after the L-theanine adventure. I marked two years of tapering in April. How depressing.

 

My doc suggested again that I switch from metoprolol to atenolol as it does not cross the blood-brain barrier as well and I might have less anxiety when reducing it. She was actually right (or maybe I had gotten the dose so low it didn't matter) and I took my last four tiny bits yesterday. Have had a lot of muscle/tendon pain and fatigue.

 

So I am going to fly to Chicago on May 22 to see the orthomolecular docs at Mensah Medical. I have never had anxiety flying but wonder how I will do in this state when just a loud noise makes me scream. There goes the tax refund...kids still don't have braces. I hope they can unstick me. I have ordered a T-Tapp DVD...it is supposed to help you exercise without elevating cortisol levels. I am relatively okay exercising but exhausted after (I think this is a fibro thing).

 

Ok, B, here are my thoughts about my sister. First, I will feel sure she got away with a two week taper after 17 years of Prozac when she is two years out. But in a way, she has done it the reverse of most of us. We start going off meds, then try to heal. She has actually been working with him for at least four years, and now he thinks she is ready to go off. I don't know the full scope of what they have done...I know in the beginning he had her on narcotics to sleep...said she couldn't heal without five straight hours of sleep a night. She didn't have any problems going off Vicodin when she was better. He tested her for heavy metals using chelation...that is a baseline urine test, take the chelator, then see how much she puts out. It was a lot, apparently she has a genetic inability to excrete metals normally. Her copper-zinc ratio was off. She takes methylfolate. That's not all, but all I know. She is also on a very clean diet. She says her muscle/joint pain has greatly diminished since stopping the Prozac.

 

One reason I am so interested in all this is that my grandmother and my father had serious mental illnesses. Interestingly, my grandmother was one of seven...one died by suicide, one we can't remember, and all the rest died of cancer, as did my dad.

 

I read an excerpt from Walsh's book. He wrote that all individual genes do the same thing, code for a protein, and proteins that catalyze chemical reactions are called enzymes. If you are looking at his website, the video on bipolar may be the most recent, delivered to the International Bipolar Foundation.

 

I don't think mental illness can be reduced to chemical equations, I think it involves all the layers of life. But because of my family history, I am taking a gamble on this.

[Petunia]

Thanks for the update Meimei,
 

So I am going to fly to Chicago on May 22 to see the orthomolecular docs at Mensah Medical.

 
Is this the same place your sister has been going?  I hope you will let us know how this goes.  I watched some videos from their web site a few days ago and they gave me some encouragement to continue with my current theory that like your sister, I may also have a problem with my copper/zinc balance.  I tested high for copper a few years ago.
 
Flying to Chicago with your current sensitivities, may cause some added discomfort, but I'm sure you will manage and I think it will be worth it if you have the opportunity to go and possibly get some answers.  It will be interesting to know what they say.
 
 

I don't think mental illness can be reduced to chemical equations, I think it involves all the layers of life. But because of my family history, I am taking a gamble on this.

I agree, the chemical imbalance theory of mental illness was only ever a theory, created in order to sell drugs. Human emotion, cognition and behavior is so complex, it seems unbelievable that anyone would believe it could be 'normalized' by adjusting one, individual neuro-transmitter. But I did for a while. But if as individuals, we have various, measurable imbalances in the way we metabolize certain important nutrients, and this may effect the way we feel, and experience the world around us,  then I think this could be an important piece of the puzzle.  Especially if there are relatively cheap and harmless treatments which improve lives.
 

[mattinsmom]

I've very behind in what is happening in your life. I'm sorry for that. I will try to do better at catching up over the next couple of days. Please know that I am thinking of you. 

[Meimeiquest]

Working a bit in my pathetic garden today I am reminded of how much less functional I am than a year ago. My brain is more comfortable, less agitated, no weird stuff, but I am exhausted, anxious, unmotivated. I will do my Mensah Medical testing on Monday. Here's my guess on the results: something is wrong with me and copper, either pyrrole disorder or a defect in copper metabolism/excretion. Because copper is involved is used in converting dopamine to norepinephrine, I am doing that way too much. And I have some sort of methylation defect, probably under methylation, as evidenced by my severe reaction to methyl folate and the help I get from niacin. But those are just guesses. My personality is so changed...I was not at all anxious before Cymbalta. I'm sure the toxicity of pharmaceuticals has really impacted me, and probably still does.

[lundeliz]

Good luck, Meimeiquest, I hope this will give you the answers you need.

 

Hang in there and I'll be thinking about you.

[compsports]

I wish you luck to and hope you get the help you need.

[lexicon]

My dearest Mei, I am thinking of you, and holding you in prayer ..

 

Wishing you blessings, to get to a place where you will be peaceful, serene, and healed ..

 

Sending you much love always

 

Lexi

[Rhiannon]

Thinking of you Meimei. I hope you get some help from these new tests. Also, remember that over time you're going to continue to heal and rebalance from the damage done by the meds--that just takes time, but it's happening right now.

[mattinsmom]

Wishing you clear answers and suggested ways to correct your balances (that don't include adding psychopharm!).

[Meimeiquest]

Thank you everyone for the kind wishes! Going back on more meds is not an option we're considering! Maybe I already wrote this...they said they don't work with diagnoses, but they don't think bipolar is mine. I looked like someone with a huge anxiety disorder there! Had my lab work today...we'll see.

[Nikki]

HI Meim

 

I have not been on site for a while and I was reading to catch up on you.

 

My brain is like jell-o so let me get this.....you are having anxiety and not feeling well.  You have had to put a hold on tapering?

Going for orthomolecular testing....wow that is amazing, will give you answers.

 

Sorry you are feeling down.  Lots of hugs for you.

 

Meim if you are up to it, I posted a thread in Tapering about norephinephrine and dopamine asking what they are.  I was reading about serzone on crazymeds and discovered that serzone contain norephinephrine with can contribute to anxiety.  It seems that you understand this stuff and I don't.  Maybe you can set me straight.  Does Cymbalta have the norephinephrine?

 

lots of cuddles.....PS  My father suffered from depression and my mother has had anxiety and depression.  My brother had childhood anxiety.  It runs in my family.  Things do seem to run in families.  You are not alone there....

[Meimeiquest]

Thanks so very much, Nikki! I am doing okay-enough but I have a gut feel that something is wrong in addition to the drugs. Maybe it was extreme to go to Chicago, but in a way I need to know for my family too, and also thinking of the immense pain here at SA. And there are some here who I admire greatly for their courage and persistence, but don't really want to walk the same path if there is another way. I am amazed that my sister, who did this, is still okay after a two week taper off 17 years of Prozac. So, we shall see...

[mattinsmom]

Flyby hug

[Meimeiquest]

Right back at you

[Nikki]

MQ I am not sure what you are still tapering from.  The testing you are going for, is your insurance covering it?  I admire your desire to figure this all out....Bless your heart:)

 

And thank you for helping me out as many times as you have.

[mattinsmom]

Have you received any results or insights from the testing you had done? You remain in my heart and prayers.

[Meimeiquest]

Thanks to both of you! No, I am still waiting to receive my test results. Impatiently, as things keep going from bad to worse. A week ago I slipped on a sleeping bag in the laundry room hall while catching a cat, and have probably torn the meniscus of the knee. Do.not.want.surgery. No openings in PT till Monday. Would really like to take mountains of benzos. I had a huge boohoo, not so much because it hurt so bad, but the total frustration of not having the energy to do anything, even though I look perfectly healthy. Which is why the sleeping bag was on the floor....and not having the energy to train my daughters properly to just take care of stuff like that. And trying to work in the midst of it all.

 

Nikki, I am taking lithium and oxazepam now, not really tapering but I did move the lithium down to where I could take it in intact capsules because that powder in water really, really tastes nasty. It may be the same dose (the powder is really fluffy and I always lost a little) as I had no WD symptoms when I did that.

 

I guess we are all hanging in there together by a thread.

[mattinsmom]

Ouch, ouch, ouch, ouch!!!

 

I wish there was something I could do to help. Sorry that you are hurt

[Meimeiquest]

I'll take it over a brain lesion .

[mattinsmom]

You make a good point  However, at the moment, mine isn't causing me any pain and I am not reminded of it with every step I take. Here's to us both getting better/healthier (insert clinking glasses here). 

[Meimeiquest]

Just when I thought I (or the family) couldn't wait anymore, my results from Mensah Medical came. My main diagnosis is Pyrrole Disorder (functional zinc and vitamin B6 deficiency caused by a weird thing) with elevated copper (natural consequence). Diagnosis is by urinalysis. My methylation status was normal. I am thrilled because it is the fastest to respond of any of their diagnoses. Symptoms include: poor tolerance of physical and emotional stress, poor anger control, frequent mood swings, poor short term memory, reading disorder, morning nausea, absence of dream recall, frequent anger and rages, depression and high anxiety. Copper overloads tend to lower dopamine levels and increase norepinephrine in the brain. Imbalances of these important transmitters have been associated with paranoid schizophrenia, bipolar disorder, postpartum depression, ADHD, autism, and violent behavior. More than 90% of persons diagnosed with depression, behavioral disorder, ADHD, autism, and schizophrenia exhibit depleted zinc levels. (From info sheet). Sadly, my husband says they nailed me. Now we have to see if their prescription nails it. It is a list of high dose supplements, am and pm, cal/mag, evening primrose oil, and, "for calming consider" inositol and GABA. I have to wait for a pharmacy to call and see if we are willing to pay for this, and then they compound the am/pm supplements and mail them.

 

If someone is interested in looking into this and spending tons of money, I really don't know much beyond what is listed in the resources and video library sections of mensahmedical.com. The doctors come across in real life exactly as they do in the videos. I was able to fly in and out the same day by having an early afternoon appointment.

[Rhiannon]

Oh ouch, sorry to hear about the knee! 

 

Hope the supplements give you some relief. Keep us posted.

[mammaP]

Hope the knee is improving Meime and hope the supplements help. It will be interesting to see how

you get on with them and if they help, keep us posted.  Really hope they help for you.