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Author Topic: Agitation from VNS- does it resolve ever?  (Read 3059 times)
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« on: February 25, 2018, 09:26:46 AM »


I have TRD for 12 yrs after my son was born. I always had depression, but it became very severe.

Treatments I’ve had: ECT, TMS, all the medications, neurobiofeedback, lots of therapy, ketamine infusions.

My brain stopped responding to the only med that worked- Pristiq.

I had my VNS implanted 11/27 (my insurance paid the whole 160k!). Turned on 12/19. I immediately stopped having 3-5 migraines per week within a month and my non-stop suicidal thinking stopped.

Now im at the lowest setting with the pulse width set for the lowest side effects. I have incredible agitation. Decreasing has helped some, but not enough. So, I’m using my magnet and keeping it off for now.

I called the company and they said 5% if people have hyper insomnia at 3 months and 1 at 9. Agitation, however, did not improve with time. If it makes you anxious, you’re stuck.

I’ve read a lot of the legislation page and everything I can find on here. I know this happens, but I can find nothing giving me hope it will stop. There is confusion about whether this is a hypomanic episode or not. My doctor feels it is reflective of my overall state: highly agitated depression. Of course, anyone with TRD knows throwing agitation on top of depression is very dangerous.

So, I’m set to off for now but I still sweat by afternoon, have pressured speech, struggle to sleep, my hands shake, I think everyone is mad at me. It’s uncomfortable, but my depression symptoms are improving a great deal.

ECT was so amazing. Worked so well. And erased huge parts of my memory.

Im looking for clarification on agitation versus hypomania and inspiration if anyone has had this and can tell me that over the days, weeks, months, years it resolved. I can manage through anything if I can see the long term goal. I have so few options if this doesn’t work out. If it doesn’t, I will probably go back to microdosing. That helped a lot, but also agitated me. Every treatment has agitated me except ECT (and tms and neurobiofeedback just did nothing).

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Head Cheese

« Reply #1 on: February 27, 2018, 03:45:35 AM »

Welcome mellimel,

We are very glad you have found us and have begun to explore the site.
This is defineately not your first rodeo.  Sounds like you have done everything possible to find relief for your depression.
The side effects the vns is responsible for must be awful for you, just keep in mind MOST of the members here are also suffering from side effects problems. So you are not alone.
When a problem arises and every setting has been tried, there is one more "trick" left to try. Shut the vns off for 2-3 months then begin again.  This has worked for other side effects.  Just make sure you have medication to help you during this time the unit is off.  Please keep us posted on how you are doing.

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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