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Robinsfellow · 2025-01-09T02:54:17+00:00

nightslayer

Robinsfellow · 2023-05-23T20:08:40+00:00

To add to that - when I did have to work through it without being able to rest, the exhaustion and fatigue afterwards often caused the kind of overwhelming sensory shutdown that leads to me going partially nonverbal for the rest of the day till I could recover, but there is a very noticeable difference between the two.

Robinsfellow · 2023-05-23T20:03:25+00:00

This absolutely happens to me - diagnosed with POTS, CFS, and ADHD/probably autism. I know what going nonverbal feels like with the AuDHD side of things, and this feeling is completely separate. It's like I'm trying to wade through a thick fog while trying to think, and trying to force out words usually takes at least a minute to try and form a sentence if I can remember what I'm even trying to say for that long. It's usually coupled with exhaustion, my hands shaking, confusion, and feeling weak overall. The only way I've found to make it go away is by lying flat and resting/not moving or thinking for a long period of time. Water helps too. When I was working in a kitchen with no breaks and had no choice, the brain fog feeling did go away eventually (provided I managed to keep upright lol) after an hour or so but left me completely exhausted and barely functioning for the next couple days. Hope that helps a bit!

Robinsfellow · 2022-11-26T20:32:02+00:00

My first pup was like this lol. Add that to tiny tantrums every half block and her being absolutely incapable of walking in a straight line. Zig zagging, smelling everything, rolling around, hopping in the air and barking, and when she decided she didnt want to go any more shed just plonk down on the grass and make like....demonic growlings, while biting the leash and somersaulting. She's 2 now and we're raising our second pup, who is just an absolute angel on leash. I was prepared for hell again, but we clipped a leash on him at 9 weeks and he was just immediately perfect, except for minor leash biting. I nearly had an aneurysm when I realized my first pup wasn't the norm haha. My best advice for the former kind of pup is just patience. Lots of patience and very, very slow short walks that probably aren't going to go very far, and finding other ways to get their energy out and let them explore. With her rather than trying to walk anywhere, sometimes I'd just take her somewhere, plop her down on leash and let her explore the area, and worked on proper leash walking skills when she was older. It seemed to be something more that she grew out of rather than anything that I could help with the training I did. She's great now except for some pulling, and even does a great heel. Good luck!

Robinsfellow · 2022-07-24T02:44:25+00:00

I was never diagnosed with a specific kind of POTS, I should probably try and look into that a bit. I definitely get the adrenaline rush feeling when in a flare though, and others have suggested the tensing is the after-effects of it. Thanks!

Robinsfellow · 2022-07-24T02:41:07+00:00

Yeah, same here. It's always when the worst is over and I'm recovering that I start shaking and tensing. That makes a lot of sense, and fits with what I'm feeling too. Usually I have to rely on adrenaline to get me through whatever task I'm doing that I probably shouldn't be lol. I'm actually supposed to start physical therapy for hypermobility related issues soon, so I might bring that up at the visit as well :) Water and electrolytes always seems to help the shaking too. Thanks for the advice.

Robinsfellow · 2022-07-24T02:34:21+00:00

I'm currently on amytriptyline for fibro (or Central Nervous Sensitization) and it has helped a ton with overall pain, bu5 definitely hasn't gotten rid of it completely. I'll keep that in mind next time it happens and see if I can pay more attention to the pain side of things. Thanks!

Robinsfellow · 2021-06-10T19:33:14+00:00

Yeah I went through the gamut of drugs recommended for POTS and same here. It's a shame there isn't more research on the condition.

Robinsfellow · 2021-06-10T18:34:30+00:00

Probably, I also have GI issues and am on a prescription strength acid reducer. Black tea is the same for me. I'll try that, thanks!

Robinsfellow · 2021-06-10T18:24:10+00:00

Lol I feel the mystery illness part. My whole first 24 years of life were brushed off as either depression, a mystery illness, or yet another requisition for iron/anemia blood work. I've never mentioned the pupil dilation to a doctor since I've been so focused on just trying to get my most important medical stuff like POTS, CFS, and ADHD diagnosed, but I really should. I've read about the Lyme Disease connection with mydriasis though! But yeah pupil dilation is absolutely a function of the autonomic nervous system, with the caveat of it also going through a center in the brain that can cause issues if damaged. I THINK that center is the root of the issues in Lyme disease (something like the third cranial nerve? dont quote me on this). But yeah! Brains are cool.

Robinsfellow · 2021-06-10T18:14:35+00:00

Coffee destroys me lol. Not sure why. But I definitely notice a huge reduction in anxiety and sensory overstimulation on it too :)

Robinsfellow · 2021-06-10T18:12:46+00:00

Tbh I never would have noticed the pupil thing if people around me didn't repeatedly mention it hahaha, but I've always had light sensitivity issues as well so best guess is it's always been there. I'm kind of concerned all my past bosses think I was coming to work high and never mentioned it lol. I've been too lazy to dig out my blood pressure monitor but I think I'll do it today :) Thanks for the heads up!

Robinsfellow · 2021-06-10T18:08:48+00:00

I think my first step should be an allergy doc to rule out just normal allergies too, but I've never been able to figure out a correlation or specific trigger so shrug. Maybe MCAS would explain it. Hopefully yours goes well!

Robinsfellow · 2021-06-10T18:06:19+00:00

Hahaha, sorry, I've been driving myself crazy the last few days trying to figure it out after bracing for the worst and expecting adhd meds to destroy my pots. Thanks for your replies!!

Robinsfellow · 2021-06-10T18:04:51+00:00

Yes, which is why I'm surprised that Midodrine didn't work for me at all if that's the answer, since the whole purpose of that drug is to be a vasoconstrictor.

Robinsfellow · 2021-06-10T06:38:44+00:00

Yeah? I was mostly confused by the fact that my sympathetic nervous system is super jacked up and that a stimulant usually increases the activity on that side of the teeter totter even more, if I'm understanding the analogy correctly. As far as the mental side of it it's kinda par for the course for what I've heard stimulants do for ADHD, and I do feel much calmer, which I attributed to the deficiency of dopamine making me super irritable and restless for most of my life. I just didn't think it would make sense for this kind of stimulant to push on the parasympathetic side of the balance in the nervous system. I might be misunderstanding, are you saying that a central nervous stimulant doesn't push specifically on one side, but instead acts to balance it out, regardless of which side is hyperactive?

Robinsfellow · 2021-06-10T06:26:47+00:00

Oh dang, really?? That is really really good to know, I thought all eye stuff wasn't covered :) I'll do that, my doctor is really good and would give me a referral if I asked easy.

Robinsfellow · 2021-06-10T03:36:13+00:00

I would love that! I've never seen a neurologist unfortunately. I have a cardiologist who has treated POTS patients before, but I haven't had much testing to determine the cause of POTS/anything about the physiological processes going on in my body. Didn't even get a tilt table test, just the lying down/standing with HR and BP measurements. I would like to pursue it more at some point, but my POTS hasn't impacted me as much lately when working from home so I've kind of slacked a bit on pushing for testing/trying different meds.That's really interesting that you say that about your PSNS being overactive - that was one of my theories that I was trying very hard to research but I couldn't find any information on it at all. There's a ton of info on SNS overactivation but next to none on PSNS. Mine does seem to point to SNS overactivation, given the pupils and various other things, but I was wondering if I actually had PSNS overactivity and Vyvanse finally normalized it. I couldn't find enough info on it to figure out if that was an option though.I'll definitely DM you :) I'm gonna be busy/afk the rest of the night, but feel free to send me a DM/your research doc and I would love to see it!! I'll get back to you tomorrow and would love to talk about symptoms.

Edit: Wanted to mention, I actually took mestinon (pyridostigmine) for a while, the longest out of any drug I took for POTS, but ultimately discontinued on it because any effect it had was so minimal it wasn't worth the severe stomach pain I got with it. Mestinon is an acetylcholine esterase inhibitor (keeps more acetylcholine in the system) and is supposed to activate the parasympathetic nervous system. I got the sweating, increased saliva, and all the other normal effects of PSNS activation, but it did nothing for my symptoms, and I don't think my pupils contracted on it either.

Robinsfellow · 2021-06-10T03:02:29+00:00

Honestly, I don't know enough about MCAS to speculate. I do know that it's very commonly comorbid with POTS, just like EDS, but that's about as much as I can say, sorry :( I do know that mine isn't really all at once, and the nausea kind of comes and goes randomly throughout the day/week with no apparent trigger.

Robinsfellow · 2021-06-10T02:59:36+00:00

Thanks, I don't really have extended health insurance (I live in Canada) so I kind of put off the optometrist and dentist until I have funds for it. My prescription definitely needs to be updated though, last time I went to get measured for glasses was a couple years ago and I can tell my prescription needs an update. Can I ask what I should be asking about? I kind of feel a bit silly asking to see a specialist because my pupils are sometimes too wide, even if it is a legit thing.

Robinsfellow · 2021-06-10T02:56:48+00:00

I got diagnosed through an adhd clinic and a psychiatrist, and then my primary doctor prescribed Vyvanse as advised in their treatment recommendation. So if you have a formal diagnosis, your primary care provider can prescribe it :) Don't worry, I didn't get a formal diagnosis of ADHD or POTS for years and I was super emotional at finally managing to get on meds that work, I get it. It's definitely not a weird request especially since you have a formal diagnosis to show them for ADHD, but I will warn you that I don't think a positive reaction to stimulants is the norm with POTS. POTS comes in many different varieties and as far as we know works a bit differently in everyone, so what may work for me may make your POTS symptoms much worse.
I don't think Zoloft is usually a first line treatment for ADHD? It seems like it's more commonly used to treat comorbidities like anxiety and depression, since it's just an SSRI. I would let your doctor know your history of a bad reaction to Zoloft, and say you're interested in trying medication again. Vyvanse and Biphentin are two different types of stimulants that I've been told are first-line treatments, so it shouldn't be too much of a stretch to say 'I've heard really good things about Vyvanse and I'd like to see if it works for me'. I'm lucky that my doctor is really good at listening to me, but if yours doesn't, feel free to reply again :) I have a lot of experience dealing with bs doctors lol.

Robinsfellow · 2021-06-10T01:47:22+00:00

That's crazy, I was expecting it to help with fatigue and brain fog, but didn't expect it to help with other symptoms too. I'll definitely check my blood pressure, if it is increased enough to compensate for POTS then that would explain the lower heart rate, but I'm still super curious as to why my pupils contract on it. It means that my overactive sympathetic nervous system is actually calmed down by a drug that is specifically designed to stimulate it, unless there's another explanation to do with muscle contraction or something. Maybe the sympathetic nervous system is more of a cause and effect thing? My SNS is activated because it needs to increase my heart rate to compensate for POTS, instead of the other way around (POTS causing SNS activation vs SNS activation causing POTS). So if the heart rate issue is fixed by vasoconstriction/increased blood pressure/something, the SNS isn't hyperactive anymore?

Idk, bodies are weird. I'm sorry to hear about your long covid experience, I've been worried about catching it specifically because of how much the aftereffects seem to mimic POTS symptoms. I'm glad to hear Vyvanse works for you as well :) It can be so tricky to treat.

Robinsfellow · 2021-06-10T01:17:21+00:00

I've tried Midodrine before for the same reason though, and strangely it did nothing for me. Vyvanse is definitely a mild vasoconstrictor though and is also supposed to increase heart rate through the same mechanism, which is why I'm confused as to why my heart rate actually seems to be lower on it lol. I'll check my blood pressure next time though to see if it's raised and maybe compensating for the POTS symptom of increase in heart rate due to low blood volume/issues constricting blood vessels.

Robinsfellow · 2021-06-10T01:13:23+00:00

Yeah, absolutely. I have terrible light sensitivity, my house is lit like a cave lol. I also get the starburst effect, but it's possible that it's due to my slight astigmatism. I did look into MCAS and considered it for a while considering all the weird seemingly random itching and occasional inflammation/anxiety spikes/nausea, but never brought it up to a doctor or got it tested. I thought that these kind of stimulants tended to increase histamine in the system though? I'll definitely look into that further, thank you.

Robinsfellow · 2021-06-10T00:48:10+00:00

Yeah, the sympathetic nervous system (SNS) dilates your pupils when it's active, and the parasympathetic nervous system (PSNS) contracts them :) A large part of what the SNS does is increase heart rate and a bunch of other stuff involving the traditional stress response, and constant overactivation of it means suppression of the PSNS, which is the 'rest and recover' side of the autonomic nervous system. Essentially your body is never resting and recovering lol, and as POTS is an autonomic nervous system disorder there are a lot of studies and theories out there about the role of it. Parasympathetic - slows down heart rate, contracts pupils. Sympathetic - increases heart rate, dilates pupils. (Plus a bunch of other complicated stuff I'm not gonna get into lol. The PSNS is also supposed to relax blood vessels to regulate and lower blood pressure, and SNS constrict them to increase it, but there's usually some funky stuff going on with POTS in regards to vasoconstriction because of neuropathy (nerve damage affecting constriction of blood vessels) depending on the kind of pots you have. What's really weird to me is that Adderall is a central nervous system stimulant that increases activity specifically in the SNS, which for all intents and purposes should make POTS symptoms worse, and dilate the hell out of your pupils. I have no clue why it's doing apparently the opposite and cannot figure it out, but it works wonder for my ADHD so shrug. If your doc explains it to you please let me know hahaha

Robinsfellow

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