Out of my mind with atypical antipsychotic related metabolic issues

Hi, it’s Allison.

 

I know your time is valuable which is why I’m hoping you’ll accept my check for reading and evaluating this letter about my metabolism.

I’m really strugging.

On a day to day basis, I journal my food and my hunger level. I’m rarely satiated-famished all day with a hunger level of 7. It’s hard to focus on anything, especially my writing and/or daily duties like hygiene and self-care when all I do is prepare healthy food to carry around with me so I can eat every hour.

The hunger is worse when I take my Metformin. Why do you think that might be?

Eating, even low carb meals makes it worse. I can’t figure this out and need your help.

I don’t have hunger pangs but a feeling of jittery irritability and the feeling that I’d do anything to get some food. Not sugar necessarily but I did faint recently in Kohl’s and had to eat half a candy bar.

So the only time I’m able to do anything with a clear is in the morning before I’ve eaten. It’s my ‘golden time.’

It’s hard to ‘do the right thing’ when the right thing makes life harder.

As you know, I’m on Clozaril, the drug causing this metabolic problem. But it helps me greatly with Tardive Dyskinesia, stabilizes my moods, helps me sleep predictably and regularly, even though I’m in pain most of the time.

I know you recommended I try Saphris or Latuda but those drugs likely as heck, according to my shrink, would aggravate my TD the same way Invega, Invega IM, Geodon, Risperdal and Zyprexa did. At the end of a three year period of no symptom control, even the sedating seroquel aggravated the tic, or rather; thrashing. Forget about sleep or signing my name. It was a horrible period of time.

I am one of the unlucky few who can’t take the highly effective first line treatment Benztropin (Cogentin).

I pay a high price for TD symptom relief beyond metabolic difficulties. Weight management is epic. Thank god I love exercise (weight train and 8 hours of cardio a week), and changed my diet to 95% raw foods.

I have monthly blood for absolute neutrophils and WBC, had to reduce my Enbrel for psoriasis and have to really take care of myself to have good labs. It’s a pain in the but safety protocol Teva and the other generic giants have in place to prevent agranular cytosis. (sp?)

As for your suggestion that I ‘get off Clozaril,’ I’ve tried. I put myself in intensive outpatient so I could try in a supervised setting. First we tried Invega, Seroquel, Risperdal, Abilify and Zyprexa, all of which aggravated my symptoms even more. You probably already know that atypical and traditional antipsychotics as well as Reglan cause Tardive Dyskinesia in the first place.

This is totally illogical but when one removes the causal drugs, even carefully titrating lower and lower there’s this “Withdrawal Emergent Syndrome” where the symptoms are wildly worse. I was admitted to the ER three times for this and as you might imagine, the ER docs just wrung their hands, shaking their heads. You’d have thought they were the ones in observation from the looks of their faces!

I’ve had bipolar I since my first full blown manic episode in ’89. For a long-termer like me, Lithium would have been worse. I’m glad it’s my only drug allergy or I might be on dialysis by now, much worse than what I deal with currently.

I need you to help me buy time on this metabolic thing, help me delay the progression. (Hopefully until after I die).

I’ve already had five foot surgeries (Fusions bilateral and more) from professional sports overuse injuries (pro beach volleyball in LA), and I really like what’s left of my feet!! LoL!

Is there any way that I could have my blood sugar levels monitored more frequently as I employ changes in my weight training, diet, herbs and other holistic approaches? I’m finding Cinnamon helps with the hunger but online the reports are mixed. You’re pretty advanced and I think you could really help me delay diabetes.

I might even try pancreatic supporting chiro and possibly acupuncture. But first I need to find out if my Metformin is too high or why I’m starving all the time.

I’d like to do this and ask you if you think I should see an endocrinologist.

Thanks so much for reading my missive. My shrink says I’m an ‘exotic.’ Thank God he puts up with me. I’ve stayed out of the inpatient psych ward for sixteen terrific years save a few long term bipolar depression relapses. Now that I’m writing for four different mags, life is pretty good, except when I’m hungry all the time!

 

Sincerely,

Allison Strong

 

Comments anyone? Anyone else out there struggling with these issues? I really hope to buy time until science catches up to this problem. Believe me, they’re scrambling. There’s just too much good money to be made!!!

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