u/Motor_Mood3939

These are not typical for me so I wanted to see who else experiences this. I’m currently trembling a lot , it’s been all day. I caught myself trembling night too, so that means the shakiness begun at night and then followed over to today. It’s more like a constant full body tremble, and very visible in my hands . It’s not stopping. Has anyone else experienced this kind of “low grade” tremble. It’s a little concerning bc I’ve never had that before.

I usually see people get flares the week of their period, but I tend to get flares the week before and then into the first couple days of my period. Does this happen to anyone else?

I have suspected dysautonomia for about a year now but I’m needing more input.

To preface, I have gotten numerous exams down. Everything cardiac is okay. My thyroid is okay. My brain imaging is okay (MRI and MRA).

What is making me suspect dysautonomia? -
- everything else is coming out okay. But I have severe fluctuations in heart rate and blood pressure. It’ll go high then go low very rapidly with little to no recovery in between changes. Same for heart rate. It’ll go as high as 180 then drop to 60. Or 120 to 60 on less severe occasions . But it will go high then low but not gradually, just very rapidly. I often feel a strong weakness like I can’t hold myself up when this happens. I feel like I will faint. I’m usually not strong enough to hold a good conversation. I sometimes feel short of breath. I get nauseous and then weirdly afterwards ( after I have recovered a bit$ I have to poop. Anxiety and panic is ruled out also . These usually last anywhere from 30min-6 hours . They are lengthy and on and off. I might get some recovery time and then go right back to being bad and unstable again.

There’s nothing abnormal on my brain imaging. So I’m
Not sure what this could be.

I have a couple questions now:

1. Does this sound like anyone’s dysautonomia flares???
   If so, how long do they last you. Is there anything you do to help with these. How do they feel for you??

2. I have a Neuro appt tomorrow and I always get brushed off as it being non Neuro related but cardiac instead. However i have had more intensive cardiac work up than Neuro and everything cardio is ruled out. I haven’t done much neuro work up other than imaging . I want to get tested for dysautonomia but not sure what test to ask for or what to say so they take em serious. If you could share what helped you get a diagnoses that would help a lot

I also mainly want to know, if this sounds like one of your flares, how long do they last? Whats the severity? Is there anything you don’t help yourself ? If you are already diagnosed, what does treatment look like on a daily basis and during flares like this?

Im a little scared bc usually they don’t last more than a day but this time it has gone over to the next day . I know im catastrophizing but I’m scared I’ll be like this for a while.
I honestly have to fight going to the ER bc of how scary this feels. I have gone to the ER before for it in the beginning and they just told me it was anxiety, so i kind of know they won’t do much if i do go.

My primary just suddenly stopped practicing so now I’m scrambling to find a new doctor . Im female and looking for sown one who actually takes their toke and listens to you. I HATE when doctors make me feel rushed or unheard. If you have any good recommendations I’d love to hear. Im more of Kissimmee/ orlando, but anything in Kissimmee is significantly closer to me than anything in orlando lol.

My mom got a spinal fusion done almost 2 years ago. I’m not exactly sure which ones but her scar is pretty low on her back, I know it’s lumbar for sure just not sure which ones exactly. She has an office job so she sits all day, and mentions that she suffers from a lot of numbness, tingling and poor circulation in her legs and feet when she sits down. For her birthday she asked for something to help with that. If anyone knows anything that could help I would really really appreciate it, I just wanted to help her feel a little bit better . She already has an ergonomic seat cushion with the coccyx hole cut out . She has an under the desk peddle also, but it didn’t seem to help( I’m assuming since she’s asking for something different). So far that is all she has tried at work. I’d appreciate anything!

Honestly, I just found out about this thread and just started posting here so I’m not sure how common everything is. So, forgive me if this is a stupid question.

I feel so frustrated bc for the last month my insomnia has gotten significantly worse, and I’m only getting 2-3 hours per night. Right now my high score is 4 hours and I think that happened once or twice this entire past month. I’ve tried everything under the sun, even CBTI and it’s not really working . He even told me to just forget about the entire plan and do what feels right for myself, which made me feel like he was giving up bc nothing else was working . So I feel really stuck rn, and I usually just wake up really sad bc of this

Since getting diagnosed I have developed depression that has been consistent at different severities for almost a year now. I thought that once I started to feel better in terms of my symptoms and was able to move more, I would start to feel happier, but honestly I haven’t. Although I can do more now, I feel like that depression persists and I don’t quite know why, as much as I try to give it a reason. I’m not sure if it has anything to do with POTS itself, or just a product of POTS, but I’ve really been struggling , and I’m getting really emotionally tired of it and it’s not getting any better.

I have been recomendad to take antidepressant medication for a while now, but I just feel like my happiness would be fake . A terrible mindset I know. I feel like I have failed to do something so simple as staying happy and it makes me feel defeated and like a failure . I also am stuck on my “before POTS” . I keep thinking how I was perfectly happy before and how I can get there again without medication, since I didn’t need it before. It seems that hasn’t been working out for me though .

So my question is:

1- how many of you guys have gone through this as well? I’m trying to feel less alone right now.

2- If you eventually decided to take antidepressant medication, how has it been for you? Do you think it has benefited you or not in terms of treating your depression? Im essentially looking for positive or negative feedback on you experience .

The past two months have been intermittently very rough for me, but this week since Monday , I have gotten exactly one hour of sleep per night. Sunday I got 0. That would leave me at 3 hours of sleep for the whole week. It’s never been this bad before and I’m feeling very hopeless and it’s really making my depression come back. All day I stress about if I get sleep and how awful I’ll feel if I don’t. I’m feeling very sad, and I just cry every morning that I get out of bed bc of how frustrated I am.

Looking for some support, how do you deal with really bad consecutive days? What can I do to be more positive about this whole situation. I can help but think this is my new norm and that really scares me.

I do take 12.5 mg of Ambien extended release if anyone is wondering.

I’ve been trucking really badly for the past 2 months, ESPECIALLY this month. It seems like I’m averaging 5 hours total of sleep every week. I’m on my forth night on 0 min of sleep and honestly I’m starting to lose hope. Just looking for some success stories to keep me motivated and not end up in a deep depression about this

Im talking abt 0 min . No sleep, just constant tossing and turning for 2-3 days . Does anyone else have it that bad ??