u/Time-Ad5761

It seems that anytime my period comes around, the smallest drop of blood loss will just knock me off my feet with fatigue. Sometime it's not too bad, but I think it tends to be what tips the scales a lot of the time the year. My iron levels haven't dropped enough to explain the exhaustion, so I'm thinking its just a perfect storm of periods triggering migraines and migraines triggering the Dysautonomia or whatever order its going in. How do we stop the ride? 😅😭

This summer heat/humidity has really just intensified everything

Hey guys! I hope we're all semi-surviving the summer so far 🫰🏼

I haven't had to take any kind of flight in maybe over a decade... my friend and I have a trip to London planned next month and I stupidly didn't feel confident enough to voice my concern about taking a 2hr flight in the morning and then having to go to a concert in the evening (like 6pm) 😬. I knew that my concerns would mean them having to try an book an extra day off work while money is tight, and technically I am the only one it's an issue for. I'm also not working at the moment due to a combo of pots/vestibular issues, migraines &endo. So it felt a bit selfish to ask them to essentially spend an extra couple hundred quid to accommodate my maybe get tired and dizzy.

Obviously, will be making sure to have my compression socks, plenty liquid IV to hold me over, salt packs, snacks and fans. But am I being overly ambitious? What else should I do to prepare and how would you guys go about explaining that you might end up sleeping through the 2nd day after all the exertion...? We're friends but we definitely lost touch a while back, and they don't know quite how seriously I have to think about these things. And the money has already been spent, so I'm fully committed - just starting to realise this week that I might be over my head. I have not coped super great with the heat hitting so close to my period. Periods are kind of a new variable I haven't had to deal with in years and now I'm 2nd guessing my baselines and everything.

I'd like to think I can push through for the weekend and just let myself crash out for a week or 2 once I'm home, but now I'm nervous the crash might hit before the trip ends 😅 only there for 2 night

I've been fairly stable since March and I was invited while I was at my peak and feeling good. At the time we only knew that we wanted to go to the concert and it wasn't until months later that we had to start booking flights and hotels. I had a few drinks and was just kind of wanting my bed when we hopped on the computer (so entirely my fault for getting in this situation).

My periods only started happening again this year, but are very unpredictable. This month has really been a wake up call thanks to that along with the heat.I had 10 days in January, but then nothing until March for 2 days, then 12 days in like May, 3 days in June and I'm on day 6 for July. Sometimes I'm wiped all the way out and I'm only spotting 🤷🏽‍♀️ it is so hit or miss. How are we coping with our symptoms during that time of the month??? I can hardly keep my eye open for more than 2-3hrs on a good day atm. My iron levels are surprisingly consistent, so I can't blame that for the change. I'm at a bit of a loss.

Any advice, tips or whatever is appreciated. Sorry this also became a bit of a long rant

(Also posted to the Middle Ear Myoclonus group)

My main issue is reactive thumping to external sounds in my left ear. But strangely the thumbing is not activated when using headphones or ear phones. I did however stop using earphones for years because I was initially worried the use of them was what was causing hearing issues/what I thought was tinnitus.

I legit feel like I'm just going crazy sometimes. I can't hear the TV or anything when I'm eating because everything is just so loud. And god forbid I lie on my right side 😫😫😫 it's the BIGGEST trigger. The thumping then reacts to my heart beat, blood pumping, what feels like my brain pumping(?) AND the external sounds. It is maddening. And I have chronic health issues that force me to need to lie on my right side a lot to relieve pain - but then the noise means I can't relax at all.

But I have found recently that plugging my ear with a finger and kind of pulling down and out stops the thumping completely! Not always - it's annoying how much I need to pull as well as plug for it to work properly. It is amazing but also hard to maintain for more then a few seconds before my hand gives out. Does anyone relate at all to this???

It has me contemplating something like loop earplugs, so I can still hear what is going on around be but hopefully plugging my ear enough to keep the thumping away. I'm planning a trip soon that has me really nervous because it involves flights, a concert and being in generally loud and crowded spaces for the weekend. I haven't been on a plane in forever (before this all started) and I'm worried how the pressure will effect me, and if it'll cause a general big flare of how reactive the thumping is. I also want to be able to enjoy the concert, talk with my friend while in crowded spaces and not miss hearing what servers are asking me three times because I essentially just lipread half the time when its noisy.

Has anyone found any luck with loops or do they just make it worse? Considering buying the switch 2 since you can adjust to the occasion - but they aren't cheap... I am very broke... this trip is a big deal and I haven't done one in like a decade 😅 really want to enjoy it 🙏

My main issue is reactive thumping to external sounds in my left ear. But strangely the thumbing is not activated when using headphones or ear phones. I did however stop using earphones for years because I was initially worried the use of them was what was causing hearing issues/what I thought was tinnitus.

I legit feel like I'm just going crazy sometimes. I can't hear the TV or anything when I'm eating because everything is just so loud. And god forbid I lie on my right side 😫😫😫 it's the BIGGEST trigger. The thumping then reacts to my heart beat, blood pumping, what feels like my brain pumping(?) AND the external sounds. It is maddening. And I have chronic health issues that force me to need to lie on my right side a lot to relieve pain - but then the noise means I can't relax at all.

But I have found recently that plugging my ear with a finger and kind of pulling down and out stops the thumping completely! Not always - it's annoying how much I need to pull as well as plug for it to work properly. It is amazing but also hard to maintain for more then a few seconds before my hand gives out. Does anyone relate at all to this???

It has me contemplating something like loop earplugs, so I can still hear what is going on around be but hopefully plugging my ear enough to keep the thumping away. I'm planning a trip soon that has me really nervous because it involves flights, a concert and being in generally loud and crowded spaces for the weekend. I haven't been on a plane in forever (before this all started) and I'm worried how the pressure will effect me, and if it'll cause a general big flare of how reactive the thumping is. I also want to be able to enjoy the concert, talk with my friend while in crowded spaces and not miss hearing what servers are asking me three times because I essentially just lipread half the time when its noisy.

Has anyone found any luck with loops or do they just make it worse? Considering buying the switch 2 since you can adjust to the occasion - but they aren't cheap... I am very broke... this trip is a big deal and I haven't done one in like a decade 😅 really want to enjoy it 🙏