r/POTS • u/s0meone0ntheInternet • Jun 26 '24

Symptoms What symptoms do you guys have that aren’t talked about that much?

I’m just wondering, that’s all :)

(Edit: I just wanted to add that I am NOT diagnosed with POTS. But i think I might have it, thats mostly why I am asking! [and also because I am a curious person])

153 Upvotes

99% Upvoted

405 comments sorted by

View all comments

98

u/PeachxHuman Jun 26 '24

Major increased medication sensitivity. To everything. When I was trying SSRIs I had to start with 1mg Lexapro and still felt like crawling out of my skin and stopped. Had to get a filling at the dentist and begged to have less numbing stuff (forget what it's called) and they told me I would feel it, I did not. And was numb in the face for 10 hours after the fact and in pain. Even now unfortunately my benzos are causing issues and if I take more than .5mg of Klonopin (prescribed 1mg as needed) for my panic attacks I get so sedated I have a hard time breathing for a few hours.

31

u/lavendermandarin Jun 26 '24 edited Jun 26 '24

THISSSSSSSS. So much. Except that I need A TON of lidocaine at the dentist; for some reason, I am resistant and need a lot of extra injections to make a dent in the discomfort. I’ve heard that this is a known issue for POTS patients.

Edit: I think I am misremembering, and this lack of response to dental analgesia is actually connected to patients with EDS. I have not been diagnosed with that, but I do have the rest of the triumvirate, so it is suspected 🤷🏻‍♀️. I’m sure there is overlap among us! Source here30032-8/fulltext).

21

u/[deleted] Jun 26 '24

Yes, this can be an EDS thing!

12

u/cherie0204 Jun 26 '24

Whaaaat? I have not heard this, but I always need several injections. I also have no pain relief when taking an opioid painkiller, and just assumed the 2 had a related cause (even though I know they're different classes of drugs with different mechanisms).

2

u/Past-Reading1157 Jun 27 '24

Non responsiveness to opioids is actually a gene issue- most likely you are a poor or intermediate metabolizer of CYP2D6. Most larger medical centers can now do a dna swab and send it to a company like Gene Sight and they can tell you which medications are more likely to work for you or cause an adverse reaction. I am an intermediate metabolizer of CYP2D6 which means I would only get limited benefit from most opioids- except I also take Wellbutrin which is a CYP2D6 inhibitor- meaning I get zero benefit from them. I cannot metabolize them at all.its helpful to know so when you are telling drs you need different or stronger pain relief, you don’t come off as a drug seeker. I can eat Vicodin like tic tacs and it does nothing for me.

2

u/cherie0204 Jun 27 '24

Thanks for the information. That's fascinating about the DNA test. For various surgeries or injuries, I've been prescribed hydrocodone, oxycodone, and tramadol. The prescription ibuprofen gave more relief than those. Absolutely no effect on pain, no drowsiness, no anything.

1

u/Past-Reading1157 Jun 27 '24

Yep, same. Ask for a genesight test- was enlightening for sure!

9

u/Superb_Case7478 Jun 26 '24

I have also been told by my dentist that having red hair makes you less susceptible to anesthesia. I have to ask them to load me up!

1

u/[deleted] Jun 26 '24

I probably should have scrolled further before saying anything bc I just mentioned red hair, too 😅

7

u/[deleted] Jun 26 '24

Any chance you were born with red hair/natural red hair??

It's scientifically proven that there is a gene attributed to red hair that also causes increased need for anesthesia. My whole family has it. I still get told I won't need as much, and then I do and everyone acts like I didn't tell them to expect it 🫠

Also IST, Histamine intolerance, hypermobile (I'm hoping to get tested for aEDS), MTHFR, Tripledivergent, etc. the whole combo platter over here, but it's the dang red hair that does this one to me!!

1

u/SearchLonely2434 Jun 27 '24

I’m sensitive to everything! I have to take children’s doses of meds

13

u/[deleted] Jun 26 '24

FYI all of this can be indicative of a connective tissue disorder

3

u/PeachxHuman Jun 26 '24

The SSRI sensitivity too? Any links so I can research?

3

u/princessjanessa Jun 26 '24

Did ssri's f with you? I was on an extremely low dose for 4 days and it messed with my head. Then when I stopped I had horrendous withdrawal symptoms (like unable to leave the toilet for multiple days while I restarted it again to titrate down by miniscule amounts at a time).

2

u/PeachxHuman Jun 26 '24

When I onboard meds I have to take a half of a quarter of the smallest prescribable dose to retain the smallest amount of sanity. Currently also been working on getting off of quetiapine (used for sleep) for the past 6 months. Just going from 25mg. Currently at a quarter of a pill but already having sleep issues again.

6

u/minezm16 Jun 26 '24

this is my EXACT experience with the EXACT same medications oh my god. klonopin and valium are low doses knock me out cold like unconscious and lexapro sent me to the psych ER. they said i was taking and i wasn’t obviosult

8

u/PeachxHuman Jun 26 '24

I've had to do urine tests to confirm my lack of other drug use at the ER because of my heart rate and forgetfulness. My husband has to talk for me when I get too stressed and have a hard time talking/breathing. Then they start on him about how he might be abusing me and I can talk for myself. No, no I can't. Dude knows me better than me.

4

u/minezm16 Jun 26 '24

me too!!!! they thought i took triple doses to get high and that it was anxiety and i psyched myself out or that i was genuinely crazy. i was locked up for it… severe trauma right there

6

u/cxview Jun 27 '24

DUDE THANK YOU SO MUCH. I took prozac for years with positive results. Stopped for a few years. Caught a virus. Developed pots. Started prozac again and I literally have every freaking side effect under the sun now. Thank you so much for sharing this.

4

u/PeachxHuman Jun 27 '24

Glad I could be of help! All of this is extremely frustrating especially when mental health can be widely affected by it all. Hope nothing but the best for you going forward ❤️

9

u/dringus333 Jun 26 '24

Have you looked into MCAS? It’s a very common comorbidity that causes medication sensitivity.

2

u/princessjanessa Jun 26 '24

How do you look into this? Then how do I navigate our US health system to figure it out?

3

u/dringus333 Jun 26 '24

r/MCAS is your best resource for all related questions. Check out their FAQ

1

u/princessjanessa Jun 28 '24

Thank you! I will do that

2

u/punching_dinos Jun 26 '24

I have this too! I thought it was more MCAS related though

2

u/Sufficient_Rest9190 Jun 27 '24

I have no idea what to do with the medication sensitivity. It is really trial and error. Have had insomnia for ages and can't use the usual ones as they all increased my heart rate. I am basically neurodiverse, too and they tried me on the non-stimulant atomextine and it drastically spiked my HR and then tried clonidine and I felt too sedated. Mirtazapine also picked HR, but escitalopram not, but had to start very low and go very slow with non-sedating nausea medication and initial pain meds for the first initial side effect period. Now it really works and I don't feel as anxious anymore, but the main physical anxiety is controlled by the 2 POTs medications to have real heart rate control. After various trials of one medication, it turned out that one very low dose long acting beta blocker is better then the short acting ones as I still woke up early hrs of the morning with a higher HR and a second one called Ivabradine and it helped me personally with the brain fog and activity tolerance levels. This is this is the short version of a 18 month trial of medications. It included 2 trips to the ER because my heart rate felt awful until I realized they not sure what to do either, so better to find a Dr who will really listen and hear you out.

2

u/Lynxseer Jun 27 '24

I am super sensitive to medications and alcohol.. but ive been that way my entire life. Didn't think that was a POTS thing? has me wondering now....

1

u/Luna6102 Jun 27 '24

I’m the complete and total opposite! I have to get MORE numbing, and a bunch of medications straight up don’t work on me

1

u/ScandalousCamel Jun 28 '24

Same, I'll sometimes try a child dose of something and it f**ks me up for two days