Horrific wave at seven years

[[gu...]]

Hi everyone, I don’t like to post something like this because I don’t want to scare people. I am at seven years and one month and having a horrific wave, I would say it’s the worst I have had since the initial one two months after onset. I’m having uncontrollable dizziness, gut, pain, exhaustion, extreme tinnitus, and mental symptoms of being overwhelmed by terrible feelings. Please know I have functioned for all seven years, working and traveling. I have not been incapacitated. And my suffering has not been unbearable most of the time. I just need some support. I have spoken with Baylissa who tells me this is not unusual, but it is very hard to live through. Thank you to anyone who takes a moment to respond. 

[[Br...]]

Hi @[gu...]  I'm sorry you're having a horrific wave.  We do hear of this happening and I've personally experienced a wave of symptoms after recovery.  Sometimes we can point to a possible cause for a wave - usually a significant increase in stress.  In my case, the wave followed a serious diagnosis and surgery.  My symptoms were tinnitus and extreme anxiety.  After a few months my symptoms eased up.  It took longer than I wanted it to but it's been about 14 months since then and I feel much, much better.  Can you think of a recent stressor?

It's not always possible to identify a cause.  The important piece is that the wave will almost certainly ease up and fade away.  It's so unfair, I know, and it can leave you with a sense of vulnerability.  In my opinion it's really important to hold onto belief that your system will find homeostasis again just as it did before.  Wishing you much healing.

 

[[gu...]]

Brighter day, thank you so much for responding. To be clear I had not made it fully to recovery. I had a couple of incredible months this summer followed by being back in waves. So this is all still part of my healing journey. There was no significant stressor that set it off. What’s shocking about this is how global and severe it is with many new symptoms. This is an acute like episode. Again, Baylissa reassures me that this is not unusual. And I know of a couple pretty well-known people in the community who had acute like, long lasting waves, as far out as I am, or close to it. It is just so so overwhelming. I deeply appreciate your Support, more than I can say. 

[[Br...]]

It can be a very long road for some of us, often erratic and filled with twists and turns.  I'm so sorry this wave has been so severe.  I'm glad you've gotten reassurance from Baylissa.  

[[gu...]]

Thank you for your kindness. 

[[Md...]]

First off, I’m so sorry you’re going through this.

Second off, I truly don’t understand these waves that emerge several later after someone has healed. Honestly, what’s the physiological science behind this? Genuinely curious. 

[[gu...]]

Mdfox, I’m sorry to say I have not been fully recovered before this.

[[El...]]

I was 7 years out 5 November and I'm in a horrible setback, some symptoms are worse than acute. It's so devastating.

I really thought I was healed, and that the cataract surgery in December was the reason for my setback, but now when looking in the backrear I can actually see that it might have started slowly a little bit of a year ago. I then lost my best friend, my dog, my job and my income I had some pretty rough and extremely months and then started in a new very stressed job and som symptoms appeared then, but I didn't paid attention to them as wd symptoms and in the end the surgery was probably just the last drop and it all escalated. It's so so hard😓🙄

Edited January 22 by [El...]

[[ns...]]

[[gu...]]

Elbette, Thank you SO MUCH for taking the time to write.  Amazing that you talked about cataract surgery because that was the beginning point of all of this for me.  Did they give you Versed?    Amazing that you and I are at almost the exact same time frame and having the same experience... Every day is so hard, some more than others. Please let's stay in touch.

[[El...]]

On 23/01/2024 at 18:30, [[g...] said:

Elbette, Thank you SO MUCH for taking the time to write.  Amazing that you talked about cataract surgery because that was the beginning point of all of this for me.  Did they give you Versed?    Amazing that you and I are at almost the exact same time frame and having the same experience... Every day is so hard, some more than others. Please let's stay in touch.

Hello gutsy

I'm so sorry you have to go through this too, and it sometimes feels harder now, the symptoms are so servere. I'm not sure if they used versed, but I highly suspect it, because I was really calm and laid back the first 3 hours after each surgery. But I also got a allergic reaction to the NSAIDs eyedrops and ended up in the emergency room. 3 days after the first surgery all hell broke loose, but as said I do expect that it slowly started a year ago, I do now see certain episodes that most likely was small setbacks, but I didn't respond to it as that because I really thought I was healed. I also see that I for the last 3 years had some vague tinnitus on and of, but then I just thought ohh well I'll probably live with that the rest of my life, and we're so busy living life when we've been through this. I read somewhere that when you have been completely without any symptoms, like zero for two years you're healed. It kinda makes sense.