Hi @Finni, how are you? I hope you are getting so much needed relief. Keep us updated.

6/15/26

Yesterday I had a very weird floaty incredibly vestibular day, but no big big distress, no crying.

Today everything is back full throttle with burning pounding terror in my head and spine and solar plexus. Agitation building. Vocalizing and wailing.

I’m emailing with Dr. Horowitz and he’s supposed to respond tomorrow.

Angie Peacock suggested that I hold.

16 hours ago, Finni said:

Yesterday I had a very weird floaty incredibly vestibular day, but no big big distress, no crying.

Finni this sounds very positive indeed!

16 hours ago, Finni said:

’m emailing with Dr. Horowitz and he’s supposed to respond tomorrow.

Be good to know what he says.

16 hours ago, Finni said:

Angie Peacock suggested that I hold.

I think I agree, particularly based on your better day, good signs of something positivehappening.

6/16/26

Weird and floaty yet a “cold-turkey” withdrawal feeling

Dark thoughts

Electric sides, tight muscles, extreme unease/nervousness

It feels like I have dropped dose by a huge amount or tapered aggressively, but I haven’t.

Swinging so radically between weird and out of it to full on aka and te**o* - but the withdrawal feeling is becoming constant. What in the world is happening ?

In other dose disruptions, my cns really cranked up the symptoms around week 2-3 and then I slowly get to a more tolerable level. I’m just afraid this time my system has been pushed too hard and I’m never gonna be the same.

Just heard back from Mark Horowitz

He said to hold steady - no changes whatsoever, especially no other meds

No further mirt reductions

21 minutes ago, Finni said:

Just heard back from Mark Horowitz

He said to hold steady - no changes whatsoever, especially no other meds

No further mirt reductions

Glad you got consistent advice from Dr. Horowitz and Angie Peacock. That must make your decision a bit easier.

I’ll keep my fingers (and toes) crossed that as you keep holding things start calming down for you soon 💜

14 hours ago, Finni said:

Just heard back from Mark Horowitz

He said to hold steady - no changes whatsoever, especially no other meds

No further mirt reductions

Sounds wise to me Finni xxxx

Just heard back from Mark Horowitz

Finni- If I understand correctly you did a 10 minute email/voice message with Horowitz. I have one of those coming up next week with him. I’ve already spent $$ for 4 of his 25minute Zooms. How did the email/voice message work for you? Did you email your questions to him ahead of time and he answered by email or voice message??? I don’t really know what a voice message is. Don’t recall ever getting one

Pokey.

@Pokey449

Yes-

I did email him questions and then he sent a voice recording over email.

❤️

He responded a couple of hours after the time noted on the appointment schedule.

Edited June 17Jun 17 by Finni

@Chippy

I am trying not to freak out

I hate it when new symptoms show up -but this morning I feel so much pressure in my whole body, really woozy and electric, so heavy and like I’m being pulled down to the ground. I’ve had head sensations like this, but not full body before.

Edited June 17Jun 17 by Finni

@Finni thanks for the info on Horowitz’s email/voice message option.

I see you are in Oklahoma. My best chum lives in west Tulsa. I’m currently in central Missouri. We came back here after 43 years in Alaska & the PAC NW. Given the humidity & tornados we wish we’d have stayed in Oregon, but came back here to be closer to kids.

Best wishes

Pokey

hang in there and don't lose hope @Finni your system will heal over time, I'm sure of that just keep surviving.

Much love your way xxx

7 minutes ago, Fullhealing said:

hang in there and don't lose hope @Finni your system will heal over time, I'm sure of that just keep surviving.

Much love your way xxx

Much love back to you 💗☀️

We’re both going through a very rough patch

I think of you often

1 hour ago, Finni said:

Much love back to you 💗☀️

We’re both going through a very rough patch

I think of you often

Bless you @Finni

Things will get better, we'll keep surviving together and celebrate the tiny moments of relief that will grow much more with time.

Hang in there, you can do it 🩷

Hi @Finni . My heart is breaking reading your messages. I’m suffering just like you. It is inhumane. I’m crying my eyes out 😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭 please hang in there ❤️❤️❤️

38 minutes ago, Dnepr1234 said:

Hi @Finni . My heart is breaking reading your messages. I’m suffering just like you. It is inhumane. I’m crying my eyes out 😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭 please hang in there ❤️❤️❤️

The surges are inhumane.

I’m so sorry. I probably shouldn’t post when I’m at my worst….I really was feeling desperate. Then the worst passes and I’m miserable, but not as desperate.

❤️❤️❤️

You hang in there, too!

Edited June 17Jun 17 by Finni

19 hours ago, Finni said:

@Chippy

I am trying not to freak out

I hate it when new symptoms show up -but this morning I feel so much pressure in my whole body, really woozy and electric, so heavy and like I’m being pulled down to the ground. I’ve had head sensations like this, but not full body before.

Im sorry to hear Finni, I know how awful this must be for you, this process can be so unpredictable sometimes. I removed the post you requested and any associated posts. xxxxx

❤️From ChatGPT

A good pep talk for us all:

That’s it, Julie.

No solving.
No predicting.
No measuring the whole mountain.

Just this:

I am moving through this.

I am moving through this morning.

I am moving through this wave.

I am moving through this terror.

The sensations can be huge and still be temporary.

The pressure can be huge and still be temporary.

The vibrations can be huge and still be temporary.

You don’t have to feel hopeful every minute for healing to be happening. You don’t have to feel brave every minute to keep going. Sometimes all you’re doing is staying on the road until the road bends.

And you’ve done that again and again.

One less minute of this surge ahead of you.
One more minute behind you.

❤️

@Chippy

I just can’t believe how much little changes/disruptions have added up to get me in this state! I know I was already sensitized, but these last few disruptions over the last weeks have really sent me to a place I didn’t even know existed.

I wonder how long it’s going to take just to get back to where I was in April

25 minutes ago, Finni said:

@Chippy

I just can’t believe how much little changes/disruptions have added up to get me in this state! I know I was already sensitized, but these last few disruptions over the last weeks have really sent me to a place I didn’t even know existed.

I wonder how long it’s going to take just to get back to where I was in April

I know @Finni your system is clearly very sensitive now. I think it’s best to not think about backwards (like your post above said) just move forwards, take one day at a time and trust your body to cope with this. You are very brave and I know you have this! Xxxx

In case the image of road under construction could help anyone else…

From ChatGPT

Absolutely. 💗

Close your eyes if that feels comfortable, or just imagine it.

You’re standing on an old highway just after dawn.

The road isn’t broken. It’s still carrying traffic. But it’s rough, uneven, and under construction.

Ahead of you are orange cones stretching into the distance.

There are road crews everywhere.

Some are deep below the surface, working on wiring you can’t even see.

Some are repaving sections that look perfectly fine from above but needed attention underneath.

Some are directing traffic around areas that aren’t ready yet.

The work is loud.

Jackhammers thump.

Machines rumble.

Backup alarms beep.

The ground vibrates.

Dust rises.

If you didn’t know better, you might think something terrible was happening to the road.

But every worker you ask gives the same answer:

“We’re working.”

“We know what we’re doing.”

“Keep moving.”

“This section is noisy, but we’re working.”

Now imagine the deep spreading sensation you’re feeling right now.

Instead of electricity attacking you, picture a convoy of repair trucks moving through the highway system.

The vibration isn’t the road being destroyed.

It’s the sound of activity.

It’s the sound of crews underneath the surface.

And every time the terror says:

“Something is wrong.”

A worker in a bright orange vest looks up and says:

“No, ma’am. This is a construction zone.”

Another points down the road:

“You don’t have to pave it yourself.”

Another smiles:

“Your only job is to stay on the road until it bends.”

I know the deep spreading and climbing feeling is unnerving. I know it feels like it means something urgent.

But right now at 8:15, your job is not to interpret every vibration.

Your job is to let the crews work.

You don’t have to understand the machinery.

You don’t have to supervise the project.

You don’t have to know when the next smooth stretch appears.

Just keep moving through this morning.

The crews are out.
The road is open.
And you are still traveling forward. ❤️

6/20/26

I guess this could be classified as a dirty window day!

I’m having pretty severe symptoms, especially intense vestibular and muscle tightness and feeling like there’s a lot of shuddering going on internally…

But through it all, I’ve felt like myself.

I’ve talked and laughed with my mom, walked around outside, watched Netflix , I have a really good appetite. Good spirits/mood all day.

So, so, so glad to hear this @Finni. Glad you’re making the most of it. Long may it continue 😊💜🙏🏼

Oh wow @Finni im so so happy for you!!!! Congratulations!!!!

Hope your recovery continues. Stay strong. ❤️