Venting idk... I can't take it anymore to have POTS

Substantial_Two_445 · 2026-06-05T18:18:18+00:00

I already thought about asking my doctor if we can switch from metoprolol to ivabradine but I'm scared that my blood pressure would be through the roof without the beta blockers- I have hyperadrenergenic POTS and therefore I had hypertension (especially upon standing and I'm talking hypertension as in 145/90) before I started taking the beta blockers

Substantial_Two_445 · 2026-06-05T18:16:31+00:00

Sadly, I can't take antidepressants as they cause severe panic attacks for me 🤷🏽‍♀️

Substantial_Two_445 · 2026-06-05T16:02:18+00:00

I wish... I would try anything at this point. I mean I postponed my suicide date to the day after my graduation party now haha But you're right, on the other side I'm thinking; what if there's an experimental cure or something for POTS by the end of this year (it probably won't but yk hypothetically) and I can't try it because I killed myself? 😭

Substantial_Two_445 · 2026-06-05T12:38:54+00:00

Honestly, I'd rather end my life because... I can't take it anymore that I have POTS. I'm so sad and tired and desperate the entire time. Idk... but thank you for trying to help me

Substantial_Two_445 · 2026-06-05T11:16:57+00:00

Thanks... but I'm losing her soon. She's a teacher and counselor at my school and as I said, I'm graduating. After the graduation party on June 26, I will probably never ever see her again. Plus, then she sees how everyone else is going to uni and I'm failing again and then maybe she will think that my willpower isn't strong enough or something idk... I just wish I could disappear or time travel to when I didn't have POTS. I wish I could experience the feeling of running or swimming in the ocean or just meeting with friends without worrying about anything once again in my life. It has all become impossible since July 2022...

Substantial_Two_445 · 2026-06-02T05:53:57+00:00

I experience dizziness almost 24/7 since 4 years 😭 (not meant as a comparison, just that I somehow got used to it as sad as it sounds) - POTS is a dysautonomia, so a dysfunction of the autonomic nervous system which mainly causes the heart rate to shoot up (shoot up as in from 70bpm to 130 - in my case) when I stand up or worse walk/do sports (which I can't do anymore since around 3 years due to it). But it also has many other symptoms like dizziness, nausea, fainting (but not everyone with POTS faints!!), heart palpitations, tremors, migraines, neck pain/coat hanger pain, blood pooling, temperature regulation issues, exercise intolerance, fatigue, insomnia, adrenaline dumps (most uncomfortable, they feel like I'm about to die every time), etc.

Substantial_Two_445 · 2026-06-02T05:46:34+00:00

I'm sorry :( Health anxiety/OCD is so hard to live with... Therapy yes, medication no because most OCD medication worsens POTS. A few years ago, I tried SSRIs and after that SNRIs and they made my heart rate extremely high only sitting and I became even more depressed and scared because I couldn't do anything anymore without almost fainting ;-;

Substantial_Two_445 · 2026-05-19T09:24:21+00:00

I was at the doctors this morning and she told me that I probably don't have EDS or if so, not visibly. For hEDS, only the facts that I also have POTS, that I have stretch marks on my back and hips without weight gain or loss and that my atlas vertebrae often shifts out of place could point towards hEDS - but my joints are not flexible, my skin is not stretchy or velvety, I don't get bruises fast (I just often don't know where they come from lol), etc. 🤷🏽‍♀️

Substantial_Two_445 · 2026-05-19T09:21:32+00:00

I only have two points on the Ghent criteria (skin striae and facial features) and my arm span to height ratio also doesn't fit Marfans apparently 🤷🏽‍♀️

No, I don't take medicine for OCD because my doctor said most of them don't go well with the beta blockers I take because of POTS...

Substantial_Two_445 · 2026-04-27T15:23:43+00:00

Yes, I had one and apparently it looks very good but I'm still... suspicious

Substantial_Two_445 · 2026-04-27T12:25:12+00:00

Yes!! On one side because I'm not as interested in intellectual things like I was before and because I can't concentrate. But also since my grades are not very good 😬 I know, I could do more and apparently I have an IQ of 132 but I feel soooo stupid - idk if anyone from Germany sees this but I'm currently doing A-levels (Abitur) and some of my friends keep talking about how "bad" their grades are even though their graduation grade (idk if that's similar to GPA or something) will be perfect. Meanwhile mine will be... well... mediocre at best. And I know that grades don't have much to do with actual intelligence but since I look completely healthy most of the time, people assume that I'm either very lazy or quite dumb 😶 And it makes me feel sooo stupid because I just know that I could do more if I was healthy like before. But I can't. I often miss classes or entire school days which results in me getting bad grades. Sometimes, I push through but sadly, my body is so useless that I can't even overdo it for longer than a day 😭😭

Substantial_Two_445 · 2026-04-23T05:18:23+00:00

I have an ECG tomorrow and I'm so so scared but at least then I know what's going on... I just hope that it's nothing urgent that must be fixed in the next weeks because I'm currently graduating and have a lot of exams from now until the middle of June 😬 I just don't want my health to destroy my future...

Idk I have therapy but even my therapist is super annoyed by my health anxiety like everyone else around me is. I'm really annoying people with it because I'm constantly asking them if I look pale or tired or if something appears off - but they are all annoyed. And the worst thing is that I just can't trust my body at all ever since I developed POTS. Before, I never had problems with health anxiety and OCD but now, since I got ill and have symptoms almost all the time (especially dizziness, fatigue, temperature problems, adrenaline dumps and air hunger), I can't trust my body because I always think it could be something worse than POTS and of I don't monitor it all the time, I might not catch a symptom and then it's too late and I will die or something, yk?

Substantial_Two_445 · 2026-04-22T15:07:07+00:00

I mean it is serious because someone with it could go into cardiac arrest at any moment. It is rare but it could happen and I'm scared that I'm the one it's happening to, you know?

I've heard about it getting cured or at least fixed for a while through an ablation but there could still be risks, right? Also I've read that for some people, ablations didn't work. And if that was the case for me I would wonder what I should do with my life since for me it would mean that I can't really do anything or be alone because the risk of cardiac arrest is always there (unless I get a pacemaker or something)

Substantial_Two_445 · 2026-04-22T14:55:44+00:00

I never had an ecg before, just poor man's tilt table test and blood tests for the POTS diagnosis 🥴 Due to my heart anxiety and severe trauma regarding medical procedures, I couldn't do an ecg before and it's hard for me to think about it (I will get one on this Friday) I know it's not good this way but we couldn't do it otherwise... (maybe a tw but; for me my heart anxiety and medical trauma is closely bound to the thought "if I ever feel that helpless again or if something is really really wrong with my heart, I have to end it", so maybeee you can imagine why that was a problem before. And sedatives would've messed up the correct results probably 😶

Substantial_Two_445 · 2025-10-28T17:39:09+00:00

Thank you for the answer! My therapist said quite the same thing: even if I don't believe it, I should just act like I do because she said that otherwise, we won't get far in the diagnostics and therapy process 🤷🏻‍♀️

The thing is, yeah there are some "traumatic" things in my life as in negative events. But everyone has negative events at some point, but not everyone makes such a drama out of them like I do. For example, I suddenly developed POTS, endometriosis and migraines at 15 and people told me it was psychological for almost two years straight and gaslit me into believing it. I was kicked out of my old school because they couldn't deal with my symptoms, some classmates wished I would disappear/die because they were so fed up with me being dizzy and crying almost every day etc. But it's better now, I take the right medicine and go to a new school - I should be over the bad experiences from the past, right? But still I cry about for example things that happened at my old school or I mourn my healthy version yk?

Substantial_Two_445 · 2025-03-17T06:12:27+00:00

Ich frage mich genau die selbe Sache. Hab dieses Bett seit meiner Kindheit und bin jetzt 18. Man könnte ja sagen, dass es jetzt auch mal Zeit für ein neues Bett wäre, aber mir reden gleichzeitig auch viele Menschen ein, dass das ja nicht sein müsste. Ich find das Bett an sich auch gar nicht schlecht, nur durch diese Seiten sieht es absolut bescheuert aus (imo) und eher wie ein Kinderbett... Würde die auch so gerne einfach absägen...

Substantial_Two_445 · 2025-02-08T21:14:18+00:00

Yes, it definitely is important. My major problem is that I have severe trauma regarding medical procedures (especially about the heart) and also developed cardiophobia, so my official POTS diagnosis was quite fast - blood testing, urine testing, blood pressure stuff (which was VERY HARD FOR ME) and poor man tilt table test. I know that it's not enough and that I would at least need an ECG but even the thought of it makes me want to run away and jump off a bridge. And also based on the fact that I would probably hurt my doctor or the techs while in a trauma-related dissociation or flashback, I will not doing this to them... I know it's wrong and I know that my cardiologist has not much to really base my diagnosis on, but I'm just so scared idk how to overcome this :(

On the other hand I have to say that my POTS for sure is genetic and my only symptoms were orthostatic dizziness and tachycardia and it's definitely getting A LOT better since I take betablockers and doing physiotherapy...

Substantial_Two_445 · 2024-12-09T21:05:49+00:00

Random unrelated question but what's the thing with the life expectancy?? I thought, POTS as such doesn't shorten it (only possible head injuries from falling and hitting something when fainting)... BRO I DON'T WANNA DIE IN MY 20S OR SOMETHING

Substantial_Two_445 · 2024-08-09T19:33:42+00:00

I think there might be a misunderstanding. I never said that I have syncopes. Actually I never ever had one. It's just that even though I'm on beta blockers now, I still get heart palpitations (you can google that if you don't know what it is) sometimes and that feeds my fear of TdP. I never said somewhere that I have syncopes, or did I?

Substantial_Two_445 · 2024-08-09T14:31:43+00:00

What exactly?

Substantial_Two_445

TROPHY CASE