Profile for User: meghini

Thank you for the reply.

I was very much in the “I think it could help so I’ll put up with it” camp until things actually got WORSE Friday.

I called to ask to come in 15 min late because my eye exam was running over, but I had to get to ketamine (at the other place) right after. Figuring this out took 3 phone calls, but everything seemed fine. I get to the place and it turns out that they can’t see me because a) they were running an hour late because it was the day for calibrating everyone on the new machine, b)the guy who said it was ok for me to be late didn’t realize he was double booking. (Why is he making appointments at all? Why am I trusting him to aim the thing at my head correctly?) c) They realized I have ketamine AND NO ONE EVER TOLD ME THIS APPOINTMENT WAS AN HOUR LONG. So I had to reschedule for yesterday. Missed treatment Friday all together.

Why did no one call me? I drove 30min to drive another 40 to ketamine. Phones exist. So I tell the nurse, who is the nice one who did my intake, exactly how this lines up with my experience with their awful facility. She is the only person who’s ever said they were sorry in this whole thing. She told me to write a letter and she would personally hand it to the office manager. I was still pissed as hell. Not a great mindset to go into ketamine with.

Then Monday I get to my appointment and they call me 35 min late. I have questions about my weekend of horrible insomnia and changing those meds. The dr, who seemed so upset when he did my 90 min intake, DGAF. I told him that waiting 35 min for an hour long appointment just compounded my worries that the Tms branch didn’t know what they were doing just like every other branch. He got offended. He then said “I guess we haven’t earned your confidence so we’ll have to do that” He seemed to take time to answer my questions about my medications and reactions to TMS.

Then they started calibrating the New Machine (Neurosoft, for reference) . I knew they were getting one but didn’t know it was so soon. Why would you have someone start treatment on a machine you’re getting rid of in 4 days? I said “I didn’t think you were getting it so soon!” He said “YES! It’s Russian! Very bare bones!”
(Don’t you associate “Russian” and “bare bones” with precision neurological medical equipment and confidence?)
I said “oh, so you have more control over the treatments?”
He said “yes! And we don’t have to pay neurostar every time we press a button”

Then he started the motor threshold stuff and it HURT. It ended up in a totally different place on my head than the neurostar and it caused the muscles around my temple and eye to spasm hard enough that my teeth slammed together. I’d had problems with the neurostar feeling weird in my eye, which were quickly adjusted. I also have an absurd pain tolerance. This made me cry.

He tried to adjust it and it wasn’t much better. I finally said “ok I think that’s kind of tolerable” and the dr said “good. I wasn’t going to move it much more. And this machine is much less push and play so the tech might not be able to find that tiny spot every time.* *Youll probably just have to tough it out sometimes**. The tech in the room is the guy who couldn’t make my appointment properly. And I just told this dr how I didn’t feel like anyone there cared. But I’m
Supposed to TOUGH IT OUT?

But I figured I’d try one treatment On the new machine. If the pain scale is 0-10, 10 being the worst part of my full back tattoo, the old machine was maybe a 3. This new machine was an 8, even with the adjustments. Some of the adjustments were 11. Not like labor or anything, but worse than some injections I’ve had into injured joints (I have a chronic pain joint condition thing) . I couldn’t keep track of my podcast. Afterward the pain didn’t fade. In the bath last night the sweat made that spot on my scalp sting- like a bad sunburn or if you touch your head accidentally when you’re curling your hair. It still feels like a burn.

I got home and called my husband and he called every TMS place within an hour of us. I’m not going back to the Russian burning machine. They can’t do my ketamine and tms, which is why I was putting up with them, I can find someone who at least cares more about patients than cost per button push.

We found two places that aren’t on my insurance, but have been approved by it before that can get me in this week. I have an appointment a week from Friday at a place that’s on my insurace and was recommended by the ketamine place. Except my insurace is saying it will take two weeks to get it approved because it’s the facility that’s approved not me. One of the places that doesn’t take my insurace, the nurse called me from home, gave me her cell number, and said that she knew people at my insurace. We could get it done faster. I have an intake there Thursday am.

None of these places have ever even heard of “Neurosoft” machines.

But I was feeling hopeful. I made phone calls Thursday and my phone anxiety is HUGE. I cleaned things. I don’t know if that was the tms or the hope that it might work… but now I’m super depressed because rather than a possibility of feeling better in 3 weeks I might just be starting over. And at the end of the day, my life is nothing I ever wanted and I have no ability to change it and the people who do won’t even admit they need change. So even with a brand new 100% functional brain granted by the brain chemistry fairy… how much can it help? Nothing has ever helped for very long- and I’m really starting to realize it’s in part because of toxic family I can’t get away from. I feel stupid for getting my hopes up at all. I know how that usually ends for me.

Then today the therapist my husband and I have been seeing says she doesn’t know what to do. Like the last psychiatrist I saw more than once. (It’s nearly a year of trying and failing to find a psychiatrist). I do start EMDR in earnest tomorrow. But I feel like I’ve been asking for help and making appointments and paying drs for this for FOUR YEARS straight. Eventually maybe it’s just that no one can help me and I have to accept that this is my life now.

I’m really worried that I’m this down because I just had ketamine on Friday and it’s not that TMS didn’t work, it’s just a set back. Another in a long line. I shouldn’t feel this bad, yet. But if TMS doesn’t work I think that’s it for me. It’s scary. I’ve done an hour+ of yoga a day for the last three months and I feel this bad. If one more dr asks me if I’ve tried yoga for my depression… 🙄. I mean, I’ve tried EVERYTHING with any sort of evidenced based medicine behind it and even stuff like crystals by my bed because well, it might help. If anyone needs other ideas, there’s genetic testing I recommend, naturopaths do cool stuff testing and supplementing neurotransmitters. I’m really well educated on this. And I’m out of options.

Re ketamine: I’ve also found it very helpful and I know the place I go has people flying in from all over the us and even internationally. When I started this summer it was the only place in my state. Now there are a dozen. I think I’ll stick with the people who’ve been doing it longer, thanks. I met a nice guy who says it’s doing wonders for his MS.

But just like every other med I develop tolerance so fast. I’ve got to find something else. Ketamine is a stop gap. I don’t think there’s anything better for pulling people out of suicideality, but especially for me, the lows and the adaption and the cost… it’s not sustainable.

However, (take this with a grain of salt because it was one of the drs at the idiot place who told me this) but this dr told me that ketamine helps neurogenisis, nerve growth, and it helps people like me who have a genetic thing, being a poor methylatior, that makes it hard to even make neurotransmitters. He also said that ketamine + tms is the most helpful for people like me with complex multiple ptsd. He told me, literally, “you’re the perfect candidate for this. It’s very exiting! We don’t see that very often and it really responds well.”

So I’m not going to judge anyone for finding ketamine if they need it. Just be careful. At the place I go I have a single person sitting with me for the entire 2 hour treatment. Their whole job is to pay attention to the machine that monitors my heart rate and blood pressure and to administer medication if those get too high. I’ve needed that medication more than a few times. It’s no joke. Without the medication at the right time I could have died. I hope you at least have someone else around when you use it.

I hope someone finally gets ketamine approved via the fda for this so people can get help safely, but I don’t think that will happen until some company isolates something from ketamine they can patent so they make money.

Thanks again for your response. I was in a very bad place today when I just thought to check this on the off chance that anyone cared enough to type. It’s really helped me not be in a super scary place anymore.