Now what?

Posted by Shirley Hugh-Jesst @audriana, Aug 7, 2021

I'm brainstorming right now and as an educator, the main rule is no idea is dumb.
I've asked this group about Treatment Resistant Depression, Spravato and Ketamine infusions. I've had Electro Convulsive "Therapy". According to my doctor
he stopped after 6 out of 12 treatments because, "I'm not getting the results I anticipated."
I weeped incessantly.
I've been on antidepressants–label and novel (Nuedexta)–since 1986 and today I'm asking you, "now what?"
I'm motivated by "now what" because today I fell. It's just a symptom of "poly-pharmaceuticals", but now what?
Two months ago, the endocrinologist finally re-balanced my TSH, FREE T3, T4…blah, blah, blah…
A month ago I started Savella as an off label antidepressant, thus far, BTW, doing nothing for my fibromyalgia–but decreasing the suicidal ideations. However, I can feel my motivation to participate in activities is diminishing…and I do have supportive family, friends, and a therapist…
A week ago, I had a TIA.
3 days ago, my primary care provider down-sized my meds based on cardiac complications…the "distance between the T and Q".
And today I fell and I know it was due to the Savella… I've been wearing a cardiac monitor for a week and tomorrow is my last day. I know there is a corellation among the anxiety, dizziness, vertigo–you know the neurogical crap and the Savella. I'm taking only 25mg once a day–at bedtime…daytime dosing was horrible.
So, "Now what?"

Interested in more discussions like this? Go to the Depression & Anxiety group.

* 12.5 mg Savella

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Hi Shirley @audriana, Good to see you again. So glad you are motivated by these developments rather than discouraged. I know that being at a crossroads and trying to determine the next path to take, you can either take the high road or the low road so it's good you are trying to keep it positive!
Did you damage anything when you fell? When do you see them back for the heart monitor and the TIA?

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@audriana , I believe you once stated that you were "flourishing " during your esketamine treatments. Also you located a treatment facility 40 minutes away, but you needed transportation and that caused you to not consider this therapy, am I correct on this? "Now what" I would do is: Find transportation some how through church or other faith organizations or support groups. I would find the funding and ride share via Uber, if that's the means to get to therapy. This is your life, pretty near on the line. You have to find a way and you can do it. Who have you asked for help? Go for it, whatever it takes!

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@amandaburnett

Hi Shirley @audriana, Good to see you again. So glad you are motivated by these developments rather than discouraged. I know that being at a crossroads and trying to determine the next path to take, you can either take the high road or the low road so it's good you are trying to keep it positive!
Did you damage anything when you fell? When do you see them back for the heart monitor and the TIA?

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Hello@ amandaburnett
Thanks for your encouragement. No, I did not do permanent damage but I'm sure I'll benefit from a referral to physical therapy. Oh…I broke a molar. No matter how well my technique, I often jar my jaw upon impact.. I'm already scheduled to see my dentist..
Perspective is relative…lol…the reason I'm aware of the poly-pharmaceutical issue is because several years ago my falls became more predominant. At the time, along with a cache of pills for my "survival", such as for Hypertension, hypothyroidism blah X3, I was taking Neurontin for fibromyalgia and residual peripheral neuropathy (souvenir of chemo), and Cymbalta as an antidepressant–which caused projectile vomiting–controlled by Zofran–which caused compacted constipation–alleviated by Linzess which caused UTIs…
So, after one of my falls which resulted in PT, the physical therapists suggested that the cause of the falls was poly-pharmaceuticals. Just to make sure, my PCP referred me to a neurologist at Duke Movement Disorder Clinic and stuff, such as Parkinson's was ruled out.
We took a whack at my med list.
So, here I go again. This time, my PCP even took me off of Myrbetriq…perspective– pee pad or pill…
All the weird things I have felt this past week should have been captured by the heart monitor -8:22 a.m. fall on 8/7/21 noted in my journal.
I will mail the heart monitor at the PO on 8/9/21.
I have an appointment with a neurologist in Pinehurst, NC…coincidentally, the closest town that has an REMS Clinic for Spravato…lolololol…how's that for Perspective?

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@clutch

@audriana , I believe you once stated that you were "flourishing " during your esketamine treatments. Also you located a treatment facility 40 minutes away, but you needed transportation and that caused you to not consider this therapy, am I correct on this? "Now what" I would do is: Find transportation some how through church or other faith organizations or support groups. I would find the funding and ride share via Uber, if that's the means to get to therapy. This is your life, pretty near on the line. You have to find a way and you can do it. Who have you asked for help? Go for it, whatever it takes!

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Evening @clutch . Thanks for the "tough love" direct approach. I needed that.
We're starting with my family members–the ones who have a grasp of what I'm going through. They don't tell me to try harder or snap out of it. They see my depression as a valid illness that needs an intervention.
First, my psychiatrist is reaching out to Pinehurst Behavioral Health Care to talk to the supervising administrator of the REMS Spravato treatments. Based on my history and vitals, they will plan on how often I will go for treatment. Through Andrew Blum, from the Benson REMS clinic, based on the new protocol, I will start at the 84mg and not have to be titrated. Dr. Lamm will collaborate with Pinehurst to determine the logistics…how often, what days, and the appointment scheduled.
My husband will talk to his boss and explain that he will need to take me, weekly, for a medical procedure and I will need a designated driver…him.
@clutch thanks for telling it like it is.
My family is rallying. I appreciate your time and talent.
Take care
Shirley Hughes–Chest @ audriana
BTW…have you followed up with the Benson Clinic? Let me know if you need a ride. ☮

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@audriana, Good for you! Question: Does Andrew Blum supervise the spravato clinic at Pinehurst too?
Please let us know how it goes.

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Andrew is at the hospital in Benson.
Thanks @clutch …I will keep you informed.

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When all else fails I have turned to acupuncture with some decent results in my past, but this isn’t everybody’s cup of tea. I’ve gone to acupuncturists affiliated with large mainstream medical centers, because herbs have not been mentioned & this is my personal preference.

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@audriana

Andrew is at the hospital in Benson.
Thanks @clutch …I will keep you informed.

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Hi @clutch…just checking in.
Andrew, my psychiatrist, and I have been in contact with one another. In January 2021, I had prior authorization for Spravato. I guess that has to be revised, so I'm waiting for Medicare's response. I spent 1hr 58 min going round in circles with Medicare on Friday. I dreaded it and the outcome wasn't resolved…very low frustration level right now. Somehow, I'm still hopeful. Based on Family Medical Leave Act, my husband will be able to drive me.
I really wish these treatments were administered like ECT…inpatient and allowed to drive home at discharge.
Thanks for listening
I hope all is well with you.
Take care

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@audriana

Hi @clutch…just checking in.
Andrew, my psychiatrist, and I have been in contact with one another. In January 2021, I had prior authorization for Spravato. I guess that has to be revised, so I'm waiting for Medicare's response. I spent 1hr 58 min going round in circles with Medicare on Friday. I dreaded it and the outcome wasn't resolved…very low frustration level right now. Somehow, I'm still hopeful. Based on Family Medical Leave Act, my husband will be able to drive me.
I really wish these treatments were administered like ECT…inpatient and allowed to drive home at discharge.
Thanks for listening
I hope all is well with you.
Take care

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@audriana, thanks for the response. Medicare/Humana authorized the esketamine for me without a lot of waiting. I started with the first two treatments but it threw my nausea out of control, so have stopped for time being. Trying a new drug for nausea control. Just curious, are your treatments going to be scheduled at the Benson Clinic? Stay in touch and let us know how it goes!

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Hi!@clutch.
Yes, I will receive my treatments in Benson.
During my previous treatments, I didn't eat anything prior for about two hours. I stoked up on plenty of water and drank water throughout.
Midway, I would be so hungry and I craved Granny Smith apples. They became a part of my "protocol ". And once I could walk steadily, I had to go pee. TMI, but part of the regemine they don't discuss in medical journals.
I certainly hope you will successfully conquer the nausea.

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@audriana , Thanks for the response. Is the physician at the Benson Clinic overseeing your esketamine therapy? Just for my information. I hope it goes well. Let us know.

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