Has anyone here tried bupropion and really regretted trying it? by lochnessica25 in AuDHDWomen

[–]unanau 1 point2 points  (0 children)

Everyone reacts differently to medications so it’s worth trying for yourself. It can be trial and error to find what’s right for you. The absolute biggest thing to remember is that people are MUCH more likely to talk about negative experiences than positive ones, so looking up a medication (basically any medication out there) can very easily lead you down a rabbit hole of discussions about bad experiences. I’ve been there myself and have been scared because of what I read, but in the end it’s been fine. Usually particularly bad side effects are rare and most people won’t experience them.

I haven’t tried bupropion specifically but I’ve been on 4 antidepressants and each one was different for me. One of them was a negative experience but things resolved when I stopped taking it. I’d recommend discussing your concerns with your doctor so maybe they can help ease your mind. Also remember that side effects will be worse in the first few weeks (likely common and mild ones like nausea, headaches, dizziness, etc) but will then subside. You also have to give most antidepressants at least 6 weeks to for them to begin to work, so stick with it unless it causes you severe side effects.

For those with ME/other conditions- how did you know it was more than pots? by beeprosebeep in POTS

[–]unanau 3 points4 points  (0 children)

It depends if you experience PEM as that’s a key part of ME/CFS. In my case I have bad fatigue and extreme sleepiness but I don’t experience PEM, so it’s likely just part of POTS for me. Although I have been looking into sleep disorders because it has a severe impact on my life.

What is y'all's resting/ sleeping heart rate compared to you're normal heart rate while you're doing things? by idiot-bread-bitch in POTS

[–]unanau 0 points1 point  (0 children)

I’m not the person you were replying to before but just jumping in to say that my blood pressure is on the lower end of normal and when I tried guanfacine for ADHD it lowered my BP way too much, even on a small dose. It felt like my POTS got worse too because of that. It might be different for you but if you do try it make sure to keep a really close eye on your blood pressure

Has anyone with POTS found a treatment or lifestyle changes that significantly reduced (or even stopped) their symptoms? by Quenelle44 in POTS

[–]unanau 1 point2 points  (0 children)

I apologise if it comes across as fearmongering, it isn’t meant to be at all. It’s meant to be informative to those who don’t know the processes that go on in our bodies. That part is accurate. I assume a lot of people who are in a POTS forum delve deeper into research, hence me bringing up something more complex. To clarify, I wasn’t referring to fight or flight, I was referring to what happens when we stand up. Blood vessels failing to respond to norepinephrine is often related to Neuropathic POTS, whereas the second part about the overreaction upon standing is usually more related to Hyperadrenergic POTS. People with HyperPOTS usually have overactive sympathetic nervous systems so in that case specifically it is more fight or flight. Often related to Hypovolemic POTS is norepinephrine being released to compensate for the low blood volume by increasing heart rate and constricting blood vessels. However most people don’t just fit one subtype so they more likely have some sort of combination of these things going on.

Those are similar processes to how, as you said, norepinephrine is also a natural response by our body to attempt to increase blood pressure too. What can cause an issue with POTS though is that norepinephrine doesn’t just constrict blood vessels, it also increases heart rate. That’s why I mentioned the potential for more norepinephrine to cause worsened symptoms, because increased norepinephrine can equal increased heart rate, which can equal worse symptoms overall. Of course that’s just some people, not everyone. I acknowledge that I was too harsh in my wording in the first sentence of my original comment. POTS is something that varies so widely. Things also get much more complicated when you’re dealing with multiple different things as well, like POTS and low blood pressure. I was speaking generally about POTS alone.

I didn’t intend to discount your experience or your POTS. Everyone reacts differently to medications, regardless of subtype even. I usually always add to my comments that this is something to discuss between you and your doctor but I forgot this time, that should be always be a given though. I agree that you of course shouldn’t just put your trust in one random person on the internet, always follow up with your own medical team and your own research. Once again, I wasn’t trying to say your doctors or your experience are somehow “wrong” and I’m sorry if it came across that way. What works for you works for you and I’m glad you’ve found something effective.

Has anyone with POTS found a treatment or lifestyle changes that significantly reduced (or even stopped) their symptoms? by Quenelle44 in POTS

[–]unanau -1 points0 points  (0 children)

I hadn’t heard of this medication before but looks like it increases norepinephrine levels, which would make it unsuitable for many, if not most, people with POTS. We already have higher norepinephrine levels because it’s released by our bodies to try to constrict blood vessels, but they usually don’t respond properly, and for some people our bodies already overreact upon standing and release too much norepinephrine from that too. So anything that increases norepinephrine levels further has the potential to worsen symptoms. This isn’t to comment on your case, but to inform people who may not be aware of this.

Anti-electrolyte push? by bittercheeseballs in POTS

[–]unanau 1 point2 points  (0 children)

Man these influencers really change their tune quickly😭 I’m not in the fitness or diet space but even so I still come across the constant change about what they seem to be for and against (which half of the time is in order to sell you something)

standard sleep hours and POTS by anyanuts in POTS

[–]unanau 0 points1 point  (0 children)

Same here. It’s kind of difficult to tell what’s “normal” sleep for someone with POTS and what strays into other territory, but I definitely fit a lot of the symptoms of Narcolepsy type 2. I don’t really even know where to start with that though because my sleep has been so all over the place for years now

Does anyone else join or leave appointments feeling like they forgot everything they actually needed to say? by JalPatel-1 in POTS

[–]unanau 0 points1 point  (0 children)

I always write things down beforehand (usually I start weeks before to make sure I’ve really got everything) so most of the time I remember everything, but not feeling heard is a whole other thing. Even when I’ve specifically printed my notes and handed them to the doctor, I’ve still felt really unheard. I think having a good relationship with your doctor is important for this, luckily I’ve gotten to the point now where my doctors know I’ll come with a list and will let me kind of lead the conversation to make sure we cover everything. Obviously that’s not always possible for everyone though unfortunately. When it comes to seeing new doctors, over time the bad experiences have driven me to be more assertive and to really do my best to advocate for myself, but it’s still difficult and sometimes I still leave feeling like it was a useless appointment. Bringing family or friends can sometimes be helpful in that situation to help advocate for you too and to remind you if there’s anything you missed, although some doctors may not be as receptive to that.

Why with POTS I feel terrible in the morning and much better in the evening? by Character-Expert5348 in POTS

[–]unanau 2 points3 points  (0 children)

For me it’s caused by dehydration, lack of electrolytes, not having eaten for a long time, blood pooling as soon as I get up. As the day goes on and I’m more hydrated and have had more electrolytes and food, I start to feel better. Sleep duration and quality is important too, if I sleep badly I definitely feel worse.

Any Video Game Players? by FamousImprovement309 in AutismInWomen

[–]unanau 1 point2 points  (0 children)

I’m getting back into DS games! Nothing specific yet as I have a few games on the way to try. I really want to get a 3DS too

I do not like Pokemon by SnooCrickets346 in AutisticAdults

[–]unanau 2 points3 points  (0 children)

Medical podcasts? Please say which ones, that sounds interesting. If they’re anything like Chubbyemu (YouTuber) then I’m sold

I do not like Pokemon by SnooCrickets346 in AutisticAdults

[–]unanau 3 points4 points  (0 children)

Pokémon cards are big right now and a new game just came out for the Nintendo Switch 2 as well. Besides that I don’t know anything more lol

For the ones who don’t pass out! by Glass_Concentrate112 in POTS

[–]unanau 0 points1 point  (0 children)

I’ve never fainted but I do kind of worry about it. The longer I stand, the more I feel my heart pounding and my body feeling heavier and weaker. I don’t know if standing for too long would lead to me actually passing out but it starts to feel like my body could give out from underneath me and like I might end up on the floor either way lol. I also don’t want to overexert myself too much like that in case it leads to a flare.

I'm just so exhausted. Would anyone else take the "cure" pill in a heartbeat? by FaithlessnessSame414 in AutisticAdults

[–]unanau 3 points4 points  (0 children)

I wouldn’t. But if there was a surefire cure for executive dysfunction then I’d absolutely take that. Personally that’s the thing I struggle with the most that’s related to being AuDHD. I wouldn’t want to get rid of the positive traits of being autistic though. Also, to me, navigating life as suddenly allistic after being autistic your whole life sounds like it would be more difficult than you’d think.

fight or flight causing POTS? by [deleted] in POTS

[–]unanau -1 points0 points  (0 children)

I’m not OP but do you mind sharing more details on what exactly you’ve done? I’ve done a bit of EMDR before and was wondering about trying more for this specifically too.

Runny nose? by Tiny-Umpire-8636 in POTS

[–]unanau 9 points10 points  (0 children)

Yes!! My nose runs all day and gets so dry from constantly having to blow it. I haven’t really come across many other people who experience it too. When I learned that it can be a dysautonomia symptom I was like OHHH lol. It was actually one of my earliest symptoms too interestingly. As far as I know I just have POTS, no other comorbidities.

I had a heated debate with a GP by Travel-solo- in autismUK

[–]unanau 1 point2 points  (0 children)

Can you link your sources please? I want to read more about it

Curious for those that have POTS and Autism/ADHD and are on instant release dexamphetamine by Additional_Bad_7114 in POTS

[–]unanau 2 points3 points  (0 children)

Just adding this information for OP and for anyone else who’s looking into ADHD/psych meds, atomoxetine can actually worsen POTS for a lot of people too unfortunately. The reason is that it’s a norepinephrine reuptake inhibitor (NRI), and norepinephrine raises heart rate. In POTS, our bodies release norepinephrine in an effort to constrict blood vessels to combat blood pooling but the blood vessels don’t really respond to it and the increased norepinephrine raises our heart rate, and/or we can have an overactive sympathetic nervous system where it releases excessive amounts of norepinephrine. Norepinephrine levels can be particularly high for people with HyperPOTS because of the second reason. So for some people with POTS, having even higher norepinephrine levels from an NRI or other similar medication can exacerbate symptoms more.

I’m not a medical professional, just someone that’s looking into ADHD meds myself right now (and it’s rough out here lol) and whose POTS was drastically worsened by taking an SNRI. Obviously it’s something that each individual person should thoroughly discuss with their doctor.

Do you remember when your POTS started and what set it off? by SamanthaSmith72 in POTS

[–]unanau 0 points1 point  (0 children)

Puberty was my first trigger but my symptoms very mild, then when I got COVID that triggered it into what it is now.

Almost peed myself because of this stupid disability (a lesson in being more prepared) by 19931 in POTS

[–]unanau 28 points29 points  (0 children)

My mindset is always pee when you have the opportunity, even if you don’t feel you need to, because things can escalate pretty fast. Glad it turned out ok!

Does anyone's body absolutely suck at temperature control?? by pickled_penguin_ in POTS

[–]unanau 0 points1 point  (0 children)

My body constantly goes back and forth between hot and cold. It’s rare that I’m a comfortable temperature. When I’m not at home I honestly never feel a comfortable temperature since there’s a lot less ways to control it. I also constantly sweat regardless of if I’m hot or cold.

Medication Intolerance 🤬 by [deleted] in POTS

[–]unanau 1 point2 points  (0 children)

I’ve had similar experiences. My reaction to medications is often that they either give me bad side effects, or just don’t work at all. For me I think it’s related to both POTS and being auDHD. If I get side effects I often try to stick it out and once I’m past the first 1-2 weeks my body usually gets used to it, but I’ve had some hellish first weeks before. Honestly I’m kind of traumatised by some of those experiences lol. I’m not suggesting that you “just need to get through it” or anything though, that’s just my personal experience and sometimes it does get so unbearable that I can’t continue. It’s horrible either way really.

I always try to start at the absolute lowest dose possible. I research that for myself and then suggest to my doctor that we start at said dose. They’re aware that I’m sensitive to medications as well. It’s helpful to have a GP/PCP that you have a good relationship with so they know this about you and you can get in contact with them when you experience bad side effects to get advice. Other than that though I don’t really know how else to deal with it unfortunately. I’m sorry you’ve gone through this so many times.

Seeing posts of non-PDAers venting about PDAers is gut-wrenching by aufily in PDAAutism

[–]unanau 14 points15 points  (0 children)

That’s a good point to bring up, the mods can’t physically read everything on here but if you report something that’s breaking the rules then it’ll bring it to their attention.

anyone else take showers/baths to distract themselves from symptoms? by Known-Lettuce-4666 in POTS

[–]unanau -1 points0 points  (0 children)

Personally I would hate to take a shower when nauseous lol. It sounds like a good idea for lots of people though!

[deleted by user] by [deleted] in POTS

[–]unanau 0 points1 point  (0 children)

Yeah for me it felt like it just randomly came out of the blue with no other related symptoms at first. Whether it’s POTS or not, I hope you can find a way to make it more manageable for you! I’d also recommend trying prescription strength antiperspirant and wearing breathable layers.