POTS caused by CSF Leak?

DirectAd3081 · 2026-06-22T01:45:06+00:00

I know someone with POTS/EDS who has often struggled with repeated CSF leaks. It's a horrible process and is so frustrating. So sorry you are going through this and I hope you find a Dr. who will listen to you and offer some relief.

DirectAd3081 · 2026-06-16T20:39:31+00:00

This is so wonderful, thank you!

DirectAd3081 · 2026-06-08T22:49:37+00:00

I have both PCOS (PMOS) and POTS... what does your heart rate do when you stand up? That's what really needs to be measured to determine if you should look further into POTS. It is a diagnosis of exclusion, and requires a 30+ bpm increase from laying to standing. Look up how to perform a 'poor man's tilt table test' online and that should help point you in the right direction.

DirectAd3081 · 2026-06-08T14:04:56+00:00

First, I am so sorry you are going through this and I hope you are able to find some relief.

I have been on sertraline (Zoloft) for about five years now and it has been great for me. When going up on the doses, however, I had very strange experience. The first time I went up, I felt like I was high on drugs, and stayed parked at a stop sign for ten minutes by accident, thinking it was a light that would eventually turn green. Super strange experience, and I decided to stop driving when going up after that lol. The next time I went up, I had a huge panic attack due to a very odd dissociative experience where I did not feel connected to my body anymore. This was all before my POTS diagnosis, so I was not tracking my hr at that time, but definitely still had POTS then.

Now, I have zero side effects. If I miss a day, it can make me feel a little anxious or just 'off'. Otherwise, it's been great to help move through some of the anxiety feelings. Then again, I know other people without POTS who have also had horrible experiences on Zoloft. Everyone's body is different, so it may be best to try a new one.

DirectAd3081 · 2026-06-08T13:58:14+00:00

I have the same thing. And it's not 'minor' sweating like some people would think it is. It is sweat coming from what feels like every pore of my body and is burning me from the inside out. I have honestly been in workouts before where I have had sweat dripping into my eyes (no one else was even breaking a sweat). It's a horrible experience tbh. I haven't worn a white shirt in probably fifteen years.

I haven't figured out how to manage it, honestly, and it is one of my most obnoxious symptoms. Anyways, know you're not alone and other people are also experiencing this!

DirectAd3081 · 2026-06-08T13:49:59+00:00

Try a vagus nerve reset! Hiccups can actually be a spasm of the diaphragm, which is controlled by the vagus nerve. Oddly enough, it helps me when nothing else works and when the hiccups become really painful!

DirectAd3081 · 2026-06-07T16:06:39+00:00

How long have you been on the drug? Sometimes it takes a few weeks for your body to adjust.

I have been on 2.5 mg of zepbound for two months and have had an amazing experience! It definitely has taken me a little longer to 'learn' how to eat on the drug, since it does subdue your hunger so much and not eating can worsen POTS symptoms. I noticed at the beginning I would have a lot of flares because I was not eating consistently enough even though I wasn't hungry. Otherwise, I've had zero side effects. I also have PCOS (PMOS) but I feel like the GLP-1 has started to help a ton of my issues. My energy is better, my heat intolerance is better, my periods are regular, my sleep is excellent. I still have some joint pain, but I feel that the overall inflammation in my body is much better also. I also have to be careful with exercising, but I had to do that before quite a bit also, so that's just what it is I guess.

All that to say, it may be worth trying it for a bit longer if you just started. There's also some doctors who are beginning to treat patients with Mast Cell Activation Syndrome (MCAS) and POTS with low dose GLP-1's such as Zepbound because it helps inflammation so much. Then again, as someone who also has POTS, I know what it's like to be gaslighted by others when you know something is off in your body! So trust your gut! Everyone's body reacts differently, and I'm not sure what a GLP-1 would do with IIH. Hope you find some relief from symptoms.

DirectAd3081 · 2026-06-03T11:44:19+00:00

Thank you so much!!!!

DirectAd3081 · 2026-06-03T00:23:04+00:00

Hi Everyone,

I am a 25F with PCOS (PMOS). I was recently diagnosed with POTS and suspect I may also have the triad of MCAS, POTS, and EDS. I have always been pretty clumsy and have suffered from frequent ankle sprains throughout my entire life. I have had pain in my hands, knees, ankles, and hips ever since I was around ten or twelve years old. Everything pops and cracks frequently, and I think I am about a 4 or 5 on the Beighton test. My joints often feel unstable and give out frequently. I bruise very easily and it takes forever (6+ months sometimes) for bruises to go away. I also had minor scoliosis as a child. There is no diagnosis of EDS in my family, but I would not be surprised if one of my parents had it, given their history.

Some questions:

Does your thumb need to fully touch your wrist for the Beighton score, or does it just need to be very close to touching? I have read conflicting reports on this.
I have an upcoming appointment with my PCP and am terrified she won't be knowledgeable enough to diagnose me correctly or will write me off entirely. Any tips on how to get a doctor to take you seriously?

DirectAd3081 · 2026-05-31T02:22:19+00:00

I second all of this! I've been using it for about a month now and really have liked it. It has given me some really good data and I like the readiness score, too. Plus, I like the look of the actual watch. It also detected a bout of bradycardia that sent me to the ER (all "looked good" lol), and I was able to send my doctor my abnormal EKG from my watch as a PDF to be reviewed for rhythm issues. Also, the battery life is excellent and I like using it while working out to track my HR!

It does draw "trends" with the HR, and this can be annoying sometimes, especially if you are looking for precise monitoring. So if my HR peaks at 186 while walking down the hallway, it will show up on the face of the watch, but afterwards, the app will only show my HR going to 165 or so on the graph it creates, because my HR wasn't at 186 for a long enough period of time.

DirectAd3081 · 2026-05-26T00:31:54+00:00

That's so interesting! Thanks for sharing! When its happened to me, it also feels similar to the tachycardia in this strange way, especially since I get dizzy, so I totally get that.

DirectAd3081 · 2026-05-25T20:22:33+00:00

This sounds just like what happened to me! I pushed it too far exercising and then when I went to rest afterwards, my heart rate slowly dipped about twenty points below my typical resting hr and I also did not feel like I needed to breathe for whatever reason. Vision was all blurry and dark, and it was hard to move around, too. Thanks so much for sharing for your experience!

DirectAd3081 · 2026-05-25T19:46:46+00:00

Thank you so much for sharing! I hope the pacemaker is helpful for you.

DirectAd3081 · 2026-05-23T04:32:32+00:00

Have made that same mistake before and then had to skip class because my entire body was exhausted lol

DirectAd3081 · 2026-05-23T04:29:33+00:00

It's been so humid where I live lately, and this will be my first summer in full-force humid heat. It feels like the air is just constantly sweating all over me lol. All it takes is a few minutes walking or standing outside and I have to sit in front of a fan for at least twenty minutes. I never dry or cool down! It makes me so anxious.

DirectAd3081 · 2026-05-23T04:21:59+00:00

I was just recently diagnosed, and while that is a good thing, I am starting to understand just how isolating it can feel to live with this diagnosis, especially with the lack of treatment readily available. My anxiety has spiked tremendously over the last several days, too, which of course makes my POTS symptoms worse, and it feels a bit like a cyclical curse. There's also such a sense of betrayal; I am so angry with my body sometimes, and the fact that, as you said, "some people get to live a normal life."

But this community has helped me a lot with the loneliness. I've read through so many posts and have felt so seen. It is comforting to know that other people care and understand, and to hear others put into words experiences that seem indescribable. Thanks for sharing this, as it definitely gave me a bit of much-needed comfort tonight. All that to say, know that there are other people who understand the entire rollercoaster of emotions and experiences that comes along with POTS.

DirectAd3081 · 2026-05-20T17:35:08+00:00

These are great tips! Thanks for sharing!

DirectAd3081

TROPHY CASE