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  #1  
Old Nov 23, 2024, 06:41 PM
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qwerty68 qwerty68 is offline
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I am a vet who finally got the VA to approve ketamine treatment. Unfortunately, they referred me to a private clinic. I went for a consultation and it went well. Despite my epilepsy causing havoc whenever I disassociate they thought it would still be helpful even though they said they would likely have to pump me full of Ativan. So, they scheduled 12 initial appointments, and the first is this coming Tuesday.

I have had psychotic depression and anxiety every single day for 29 years. In the past year, they have also been probing me to see if I have bipolar and PTSD. No medication has ever helped with the depression - lots of dangerous side effects though.

Last Friday, I got an email from the clinic. Due to a paperwork snafu, they haven't received payments from the VA in months so they are canceling all VA-approved appointments after December 1. That means I can have just one appointment.

They offered to continue at a discounted $405 a session, but that would drain my savings within 3 months. It would drain much faster since I have to deal with appliances breaking down and getting a leak in my roof fixed.

I lived for years ending each month with less than $5 in my bank account and having to donate plasma to eat and because of that, draining my savings causes massive amounts of stress.

Oddly, I do have a Medicaid card, but they don't pay for it.

Is it worth going in just once? Since any positive effects are transient and they want me to go in twice a week for quite a while it feels like a poor risk/reward. Especially if I feel good for a day or two afterward, that might send me over the edge that I am very close to.

Edit: This is the only ketamine clinic within 300 miles that has a contract with the VA.
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  #2  
Old Nov 24, 2024, 01:56 PM
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CANDC CANDC is offline
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HI @qwerty68 sorry the appointments got cancelled. I am not an expert on meds. Have you ever had anesthesia before? How did you tolerate it?

Here is more on ketamine
Health Risks of Ketamine: What to Know
Ketamine

After reading that and seeing that convulsions is one possible side affect, I started to think how will that react with your epilepsy. You have some serious medical issues that could complicate things.

Even if I knew your medical condition and was medically qualified as a professional, I am not sure I could advise you. You are the one that will experience the results of whatever you decide so only you should make the decision in consultation with any mental health professionals you deal with.

How about getting a psychiatrist to evaluate you for whatever treatments are recommended. Last I heard ketamine treatments were off label meaning that it is not prescribed for depression or mental health issues.

If you are coping with life now, it could be risky to try something like ketamine. I would rather deal with what I could cope with than take a chance on the unknown, but I am not a gambler especially with my health.

CANDC

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  #3  
Old Nov 24, 2024, 03:17 PM
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@CANDC, thank you for your response.

Ketamine infusions are FDA-approved. Actually, it is esketamine, but close enough.

The VA would not have approved it if it were not. I went through two evaluations by two pdocs before the VA approved it and the clinic accepted me. I tried to get ketamine treatment in 2016, but was still in trials so they denied it.

The only reason I asked for it is because I am not doing well and it is not a daily pill so there aren't really any long-term side effects to worry about. I have permanent side effects from medications I took last decade. I don't qualify for ECT or rTMS because of epilepsy so this is literally my last option. My medical records list over 30 failed psych medications.

If the payment snafu gets resolved and this clinic agrees to continue contracting with the VA, I can go back, but given how long it takes to get approval for outside care, it will be at least 9 months from now and that is only if they fix it by the end of the year.

I wasn't looking for medical advice although I could see how my poor writing made that impression.

It was more like I was hoping that someone who has gone through it could give their thoughts on whether it would have been worth it had they only gone once. Sorry, for any confusion.
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  #4  
Old Nov 24, 2024, 04:32 PM
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@qwerty68 I am sorry that I made assumptions that were not accurate. You obviously have researched this a lot.

If you feel like this is your last hope then that might make it easier for you to decide. This article might answer the question you ask:

Quote:
Mood and Pain improvement on ketamine is often incremental, meaning that small improvements happen over time to create a big cumulative effect. These changes can be small shifts in mood or activity (i.e. small wins) that might be hard to spot at first from the patient perspective, especially if they’re still sad or in pain. Sometimes these changes can be so small, the patient’s friends and family might notice before the patient. Knowing how to spot the signs of improvement is important to really consider ketamine successful.
When Ketamine is Working (and it is Not) - American Society of Ketamine Physicians, Psychotherapists, and Practitioners

It sounds like you might get some benefit bit one treatment may only be a teaser, but it could offer a chance to see if you responded positively to the med. I guess everyone has to decide on their own.

If interested I can tell you about lifestyle changes that help me cope with depression.

CANDC

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Thanks for this!
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  #5  
Old Nov 25, 2024, 07:44 PM
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qwerty68 qwerty68 is offline
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@CANDC

Thank you for the link. I called the clinic today, and even though they are likely not to get paid for my visit they told me it is worth a try to find out how it affects me in case the VA unfixes whatever error is snarling things up.

I might post a thread with my experiences in case anyone else is interested.

Anything you want to share would be wonderful. I have been surviving for a very long time with depression but I can't say that I am coping or living.

Thank you so much.
  #6  
Old Nov 25, 2024, 08:52 PM
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These are some things that helped me @qwerty68

Healthy Mind smartphone app with daily reading and pondering No ads No purchases. Professionally done by university of Wisconsin

Palouse Mindfulness resources to help cope with stress.

5 Minute Tai Chi can also be done if seated just doing upper body free on youtube.

Seated energy work woman

Man


High protein low carb diet unles goes counter to your medical advice.

Exercise of some sort

Volunteering.

Let us know how the visit goes

CANDC

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Thanks for this!
qwerty68
  #7  
Old Dec 05, 2024, 09:03 PM
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qwerty68 qwerty68 is offline
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@CANDC

Those videos should be helpful, thank you so much.

The VA actually fixed their mess and I finished my third appointment today, which was an increase in dosage. It is really hard to collect my thoughts on it, but I am trying to write up my experiences and how it is going so far and will put it in a hopefully helpful post.

A quick spoiler, I think it should be a front-line treatment, not a last resort. Perhaps that is colored by decades of failed med trials.

I don't want to jinx myself, but I think it might be the kickstart I need. I doubt it is a complete treatment, but hopefully, I can keep up with it and add other things.

I hope this is coherent, I am a little dicey for the entire day after treatment.
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  #8  
Old Dec 06, 2024, 01:34 PM
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Oh glad you got your appointments @qwerty68 - I bet that really slows you down a lot. Hope you get the result you are looking for.
CANDC
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Thanks for this!
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