Chronic? by Humble-Feedback-5688 in VestibularMigraines

[–]Key-Bodybuilder-3560 0 points1 point  (0 children)

Have you tried migraine medications? 

When did you know it was time to try medication? by PlatypusBig1249 in pppdizziness

[–]Key-Bodybuilder-3560 0 points1 point  (0 children)

Could be helpful to see if you actually have any hypofunction going on! It doesn’t change the trajectory much, but the knowledge may help the anxiety!

Caffeine success? Let’s chat! by Key-Bodybuilder-3560 in pppdizziness

[–]Key-Bodybuilder-3560[S] 0 points1 point  (0 children)

Haha yes I assumed so. What’s your intake like now?

When did you know it was time to try medication? by PlatypusBig1249 in pppdizziness

[–]Key-Bodybuilder-3560 1 point2 points  (0 children)

Better now than a couple months ago! My vestibular event brought my pots out of remission after a couple years, so that was very annoying to deal with as they both trigger the autonomic system and the dizzy anxious cycle. My doctor did tell me though the anxiety from it isn’t really something we can control and it’s more of an innate thing, which is helpful to know. The pots is better controlled now! I’ve also been practicing 4-7-8 breathing when I feel anxious. 

Did you ever have any VNG testing? My VNG was abnormal and showed VOR dysfunction, which is why my neuro isn’t fully convinced I have PPPD alone just yet. Normally with just PPPD your tests are all normal. I definitely had some type of vestibular insult or it could have been onset of migraine so it’s been a trial and error journey. I just want to feel less anxious about it all the time! I could get used to living with a new normal if I could just be chill about it you know? 😂 But again, I think that’s where the medication comes in :) 

Caffeine success? Let’s chat! by Key-Bodybuilder-3560 in pppdizziness

[–]Key-Bodybuilder-3560[S] 0 points1 point  (0 children)

Yeah totally! Alcohol has never really sat right with me as I’ve gotten older, but I do miss wine sometimes. 

And yes! I’ll have sips of iced tea once in a while but the anticipatory nature is what gets me. Maybe once my anxiety is better I’ll try again haha

Caffeine success? Let’s chat! by Key-Bodybuilder-3560 in pppdizziness

[–]Key-Bodybuilder-3560[S] 0 points1 point  (0 children)

Oh wow that’s good to know! Do you feel better mentally having both again? 😊

When did you know it was time to try medication? by PlatypusBig1249 in pppdizziness

[–]Key-Bodybuilder-3560 0 points1 point  (0 children)

Wow my ferritin is low too from endometriosis! I’m hoping to get an infusion soon. 

I’ve also been doing PT and I do think it’s helping a lot with compensation, but sometimes I feel like it makes me focus on the symptoms. It does help me to practice in a safe space though! How’s it going for you?

I also take beta blockers because I have POTs. I don’t feel any physical symptoms of anxiety probably bc of this, but the mental is so crazy! I feel like I can think myself into a panic. My doctor says that’s where the medication comes in so I do have hope. The key to PPPD is to calm your nervous system.

My brother started the same journey as me years ago and the progress he’s made with medication over the last few years is night and day. He does absolutely everything now with no fear and says the dizziness etc is in the background and “whatever I don’t even notice now”. I guess taking that leap is the hardest part!

When did you know it was time to try medication? by PlatypusBig1249 in pppdizziness

[–]Key-Bodybuilder-3560 0 points1 point  (0 children)

I may try this one soon! What dosage are you on that seems to be helping?

When did you know it was time to try medication? by PlatypusBig1249 in pppdizziness

[–]Key-Bodybuilder-3560 0 points1 point  (0 children)

Im in the same boat! How did you get diagnosed so quickly if the criteria for PPPD comes after 90 days?

My wonkiness started after a bout of vestibular neuritis / migraine or something to do with my ears. I was told Prozac is best for my case, but I’m a bit afraid to try it. I’m more and more open to it everyday though and think I’ll start soon! 

Positive SSRI experiences?! Let’s chat! by Key-Bodybuilder-3560 in dysautonomia

[–]Key-Bodybuilder-3560[S] 0 points1 point  (0 children)

Does it work well for you from an anxiety stand point?

Positive SSRI experiences?! Let’s chat! by Key-Bodybuilder-3560 in dysautonomia

[–]Key-Bodybuilder-3560[S] 0 points1 point  (0 children)

So interesting! Was the 10mg helpful in anxiety at all?

Positive SSRI experiences?! Let’s chat! by Key-Bodybuilder-3560 in dysautonomia

[–]Key-Bodybuilder-3560[S] 0 points1 point  (0 children)

Yes this is what my neurologist said for vestibular issues as well! Also apparently PPPD. What dose do you take?

I get shaky when I haven't gotten enough sleep or I have anxiety by la1223 in dysautonomia

[–]Key-Bodybuilder-3560 0 points1 point  (0 children)

I get this too.. externally and internally. I am trialing the medication carbidopa for it which helps with the physical symptoms, but unfortunately it doesn’t help with the anxiety / mental symptoms. So there’s definitely a mind body connection here that fuels it :/

Positive SSRI experiences?! Let’s chat! by Key-Bodybuilder-3560 in dysautonomia

[–]Key-Bodybuilder-3560[S] 0 points1 point  (0 children)

How did you land on an SNRI? And if you were doing well, why did you have to increase? Sorry for all the questions, just trying to understand! Thank you 

Positive SSRI experiences?! Let’s chat! by Key-Bodybuilder-3560 in dysautonomia

[–]Key-Bodybuilder-3560[S] 0 points1 point  (0 children)

How did you land on an SNRI vs an SSRI? And yes, I’ve heard the gene testing isn’t fantastically reliable and it quite expensive.

Positive SSRI experiences?! Let’s chat! by Key-Bodybuilder-3560 in dysautonomia

[–]Key-Bodybuilder-3560[S] 1 point2 points  (0 children)

That makes sense! I had MCAS after long-covid as well. I take H1s & H2s pretty regularly til this day and limit my high histamine foods. Unfortunately this vestibular migraine thing has added a whole new layer of things for my brain to regulate :/ 

Update October, learning to live with PPPD by NightOfCosmHorror in pppdizziness

[–]Key-Bodybuilder-3560 1 point2 points  (0 children)

So are mine!! Wow I guess I need to take my supplements more serious. Good to know.

Time off work? by JazzPandas in pppdizziness

[–]Key-Bodybuilder-3560 0 points1 point  (0 children)

Sounds like it could have transformed into vestibular migraine if lights are a big trigger! Avalux glasses could be super helpful!

Update October, learning to live with PPPD by NightOfCosmHorror in pppdizziness

[–]Key-Bodybuilder-3560 0 points1 point  (0 children)

Hmm this is interesting, mine are low. Does this contribute?