Gent perfusion

I’m doing ok, I guess. Still feel quite wonky with walking, especially in the house where there’s more back and forth movement. I wake up having some subtle visual movement, but it passes quickly. I feel like I’m in a plateau, not really seeing day to day worsening nor improving.

No full on vertigo attacks so I can drive - I just give myself extra time, so I can stay in the slow lanes, and decrease the need for shoulder checks! And I can make plans with some confidence that I can do them.

I see my vestibular Physiotherapy guy today for a full assessment. Hopefully he can guide me to some improvements.

 

And even with laby there’s the dread of going bilateral. But let’s not go there!

How’s it going Saera? How long is it now since your gentamicin treatment started?

 

Nope, the laby will make you feel normal. No more anxiety!!! No more pressure changes in the ear. Hissing tinnitus/hypercusis and you will have normal energy. I am as normal as any other 49 year old man walking this earth except I am deaf in my rt ear.

I had 3 streptomycin (more powerful than gent) and 3 gent shots and I did not have vertigo but felt like shit most of the time. I am sympathetic to the laby your mm symptoms will be gone forever!!

 

My above post was meant for this. ((((Hugs)))) we are all gonna make it. I wanted to die at one time in my life with this and 3 boys under 10 years old with the laby I can’t wait to go to the beach and surf, water ski,snow ski, ride motor cross bikes with my older son ect...

I would get another laby tomorrow if needed....for me life with vertigo and fear of leaving your house is no life.

Praying for u Saera. And everyone else with this shit disease. ❤️

 

I think our improvements will now be measured and noticeable by weeks and months.

Whenever I reduced or stopped a drug, I initially thought I was ‘worse’, but then would remember that I’d made a med change. So I would count reduced medications as an improvement. If I was suffering, I’d use it, at the lowest effective dose. So take heart!

I still occasionally use a sleeping pill. Yesterday I took some clonazepam- just needed a break from feeling wobbly, anxious and pain in my ear and neck. Got a lovely long nap out of it and felt saner.

 

Oh yeah I do that one too! I couldn’t even watch the physio demonstrate it at the beginning.

Maybe back off a little- do it gently, for a few seconds at a time. Challenge yourself mildly and let the sensation recuperate. Check out my longer post in the vestibular rehab thread.

 

Oh, I remember that one. I was instructed to do it just until it made me feel sick, and slowly work up to longer times. It's not pleasant, but it does get better and really does help overall functioning.

 

Ugh computer. Poor you! I hope it’s going ok...

 

That's excellent, Saera!

 

How do you deal with that? That's what I deal with--or rather attempt to deal with but can't. It's making my life intolerable. It affects my energy level, my appetite, my mood, everything--to the point where I can't live any kind of normal life.

 

Good to hear, Saera!

I get those poofs too.

My hot flashes come and go. I think they were more prominent during the intense post-gentamicin recovery. My vestibular physiotherapist said that working our vestibulars is heat producing, so makes sense. I keep one of those Magic Bags in the freezer to cool down my neck and face.

I also liked a book The Hormone Cure. It’s a bit ra-ra (made me feel pressured to try too many things at once) but has some good insights and suggestions.

 

One thing I found very helpful for the hot flashes was to drink some ice water right away.

 

That's promising Saera. Good to hear you're doing better.

Regarding the hot flashes. If I were a woman I'd just jump in my pool. There's no way a hot flash could survive in a cold unheated pool. I do it to wake up sometimes in the morning. Straight from bed naked dive into pool. Works better than coffee.

 

Pupper - After 3 surgeries on your ear you are able to dive head first into a pool with no inner ear pressure issues? That is amazing!!
I’ve only had the shunt and they messed it up so bad I have a tube now. Cant even go underwater. That’s pretty cool!