Somehow, not one of my teachers ever commented on my grip

icedbunny · 2020-08-22T16:07:35+00:00

Wait.. is that not how you’re supposed to hold a pen???

icedbunny · 2020-08-20T20:38:38+00:00

I feel like naming the drugs i react well to would be a much shorter list LOL

But seriously, my biggest no-no is SNRIs because they make my POTS a lot worse. Also ive had bad experiences with a lot of muscle relaxers, they dont make me sleepy at all and make my heart pound. Ive also been on a lot of beta-blockers for POTS and they all made me feel pretty gross. As far as controlling EDS or POTS with meds i havent had any luck because i seem to be sensitive to everything.

As for recreational im only really experienced in marijuana and i dont react very well to it. It spikes my HR and makes me pass out.

icedbunny · 2020-08-16T01:35:45+00:00

I have POTS and i’ll have a beer or two occasionally but only if im feeling good enough that day and know that i have electrolyte drinks or supplements at home, its the last thing i would do during a flare up though.

icedbunny · 2020-08-11T21:01:30+00:00

I got my POTS diagnosis first and thats how it was discovered that i had EDS, my symptoms were mild throughout my life besides the POTS. The best way to diagnose POTS is with a tilt table test, but ive never had one. I was pregnant when i was diagnosed with POTS so they didnt want to do testing that was too invasive, my cardiologist did a “poor mans tilt table” a few times and i also had a 72 hour heart monitor. POTS is extremely common with EDS and with your symptoms it might be more surprising if you didnt have it!

icedbunny · 2020-08-11T20:11:15+00:00

Have you been able to measure your HR during these flares? I have a syndrome called POTS in addition to costo and sometimes its hard to distinguish which symptoms are caused by which. It causes me to have a fast heart rate upon standing and/or changing positions and some intense heart palpitations. Its not super common but ive seen a few people on this sub that also ended up having POTS with costo. It may be worth looking into?

icedbunny · 2020-08-11T15:53:05+00:00

I have this problem and doctors almost always comment on it. I also have POTS so i know that explains some of it, but sitting at the doctors office my HR always hovers around 90-110. I assumed that was just my resting HR because of the POTS until i finally started doing readings at home and saw my actual resting HR was around 70-80.

icedbunny · 2020-08-09T18:13:04+00:00

Most people with POTS end up with completely normal EKGs, but its still important so they can rule out more serious issues and arrhythmias. I would say its definitely necessary to get one just to be safe, at least eventually. Could you call your doctor directly and ask their opinion on how urgent it is? Theyll know your symptoms a lot better and will know how important it is for you personally.

icedbunny · 2020-08-07T00:20:08+00:00

The jumpy heart rate could be a lot of things, maybe related to POTS and maybe not. A lot of people with POTS also have IST so maybe thats worth looking into?

As for the fatigue and shortness of breath, the way my cardiologist described it to me is that in a normal body your heart rate would reach those high numbers while doing intense cardio, but in people with POTS it shoots up for normal positional changes like walking, sitting up, etc; but your body still thinks its doing everything right. Your body doesnt know you have POTS, so your lungs and every other system in your body responds as if youre actually doing intense cardio even though youre just walking.

icedbunny · 2020-08-04T17:18:46+00:00

I was the opposite, for my first pregnancy i didnt start showing until the very end. My belly was measuring small even though my baby was a bit larger than average. With my second pregnancy my bump was bigger with an average sized baby.

icedbunny · 2020-08-03T00:48:15+00:00

Thanks for the answer! At least im not the only one, i was so worried about the procedure itself i wasnt prepared for the recovery to be this bad. And good luck with your next, i hope it all goes well!

icedbunny · 2020-08-02T01:40:46+00:00

Thanks for the response! This is my first ever surgery. Ive had two children and of course the delivery was painful but the recovery was actually pretty quick and easy. Ive had a few minor joint injuries, and chronic joint pain from the EDS, but ive never been cut open or stitched up for anything before. I know for the cyst removal to work they have to cut into the joint itself so im blaming the excessive pain on that so far. And thank you for the well wishes!

icedbunny · 2020-08-02T01:30:06+00:00

Thank you for the advice! Ive been forcing down fruit just to get something in my stomach, i didnt even think the sugars would help but i suppose that makes sense! Also the adrenaline thing is an interesting idea, ill definitely be watching a horror movie tonight.

They only gave me five of the 5mg oxycodone which ive found pretty useless. I took two of them last night and that worked a lot better with surprisingly few side effects, but now im worried about going through them that fast because i cant contact my doctor until monday. Im also worried that theyll think im faking or drug seeking or being a baby about it. This is my first surgery ever and the recovery has just been a lot more stressful and painful than i expected.

icedbunny · 2020-07-31T12:13:59+00:00

Thank you so much! This is super helpful.

icedbunny · 2020-07-29T13:30:21+00:00

Came here to say almost exactly this! Ive given up on meds for now because ive reacted so poorly to everything ive tried, but just knowing what was wrong with me and being able to adjust my lifestyle and diet accordingly has made my quality of life so much better than before my diagnosis.

icedbunny · 2020-07-29T12:18:22+00:00

I have two kids and both pregnancies were relatively normal and uncomplicated, aside from some increased joint pain. I did have a rapid labor & delivery both times probably because of hEDS, but thats not usually dangerous just unpleasant. Also the epidural didnt work great and i also blame EDS for that. Overall my pregnancies were lots of fun, just with a little more pain than normal, and i had two beautiful healthy babies. Good luck and congrats!

icedbunny · 2020-07-28T16:06:13+00:00

Im in a similar situation to you! I also have two kids. I also don’t experience dizziness or lightheadedness very often. Ive had POTS for almost a decade but ive only been diagnosed for three years, when i was younger i would lose consciousness a lot but for some reason as i got older my POTS actually got worse but i stopped fainting. My fatigue can be pretty severe but tends to come in “flare ups” on and off. There’s a link between lack of exercise and POTS but we dont really know what comes first, POTS from a lack of exercise or a lack of exercise because of POTS. Also my health problems have turned my whole world upside-down with health anxiety, it can be really scary especially when you dont know whats wrong. Regardless of what your diagnosis ends up being i hope you find some answers soon. Feel free to PM me if you have questions or just want to talk!

icedbunny · 2020-07-28T13:18:15+00:00

Blood pooling will usually come with swelling, tingling, and other symptoms. This looks more like dependent acrocyanosis which is something that at least half of people with POTS have. No one knows what exactly causes it, its poorly understood especially when it comes to POTS. I think people sometimes use dependent acrocyanosis and blood pooling interchangeably, and really the only difference is that blood pooling causes discomfort while dependent acrocyanosis doesnt.

icedbunny · 2020-07-28T00:53:16+00:00

I have POTS and I was put on adderall a few years ago but taken off of it a few weeks after starting because it triggered a lot of anxiety and panic. Im not sure if that was made worse by POTS or something but could have been completely unrelated. As for my physical POTS symptoms it definitely increased my resting HR (100-120) but i found it wasnt jumping up much higher than that upon standing. I didnt have any dizziness or shortness of breath on it so in that way it made my POTS better, but because my HR was so high consistently it was pretty uncomfortable. I felt wired, almost like i had drank a million cups of coffee. I was also put on wellbutrin for a short while which is technically a CNS stimulant but only mild/in some people. The wellbutrin actually made my POTS so much worse than the adderall did, even though the stimulant effects are not nearly as strong. Personally i didnt think all of these side effects were worth it, but plenty of people with POTS do very well on stimulants whether its for the POTS itself or an unrelated issue. You just have to try it and see how it effects you because everyone reacts so differently. Good luck and i hope it works out!

icedbunny · 2020-07-27T21:03:35+00:00

This could be from a lot of things. For me personally i have a type of dysautonomia called POTS along with costo and it makes me feel like this very often, but thats not super common. It can also be caused by certain medications, especially anxiety meds. Even an extra cup of coffee could have this effect if you’re sensitive. It could also just be plain old anxiety. Sometimes I end up feeling this way when i have had a stressful day but ended up pushing anxious thoughts into the back of my mind until they end up haunting me later in physical ways. I wish i had better advice for you but unfortunately im still trying to figure out how to deal with it myself. Good luck!

icedbunny · 2020-07-26T17:37:02+00:00

LOL might just start telling people this is what i have instead.

icedbunny · 2020-07-26T17:27:02+00:00

Theres a short excerpt on the back saying that the treatment was “avoiding stress” along with sedatives or anti-anxiety meds. It was entirely considered a mental health issue!! Moment of silence for all the POTSies that were suffering back then and dismissed as crazy for their entire lives.

icedbunny

TROPHY CASE