Postural Orthostatic Tachycardia and Feeling Hopeless
I was diagnosed with POTS nearly a year ago and wow it has been a wild year. I'm feeling really hopeless. I'm trying my best to live my life the way I can. I work a very physically exhausting job and I'm still in high school but my POTS has taken a lot. It is also very uncontrolled right now. The three medications I'm on aren't doing anything. My blood pressure still drops even though I'm on two meds for it and my heart rate, well, that's a chaotic story. We tried multiple beta-blockers for my heart rate. I reacted badly to them. Now, we are trying something called pyridostigmine (a muscle strengthener????) but I'm again, reacting badly. So, I'm feeling very hopeless. Beta-blockers and the new medication (pyridostigmine) both cause my heart rate to be way too low which causes me to feel weird and like messes with my head or something and it's not good. I'm scared nothing will help. Beta-blockers and the new medication are two completely different medications. Why did I react the same to them? Why won't they help? Why won't the two medications for my blood pressure help? Why do I have to be chronically ill? The one thing that makes me feel a little better is, my biological sister was recently also diagnosed with orthostatic hypotension and she is hypermobile so I'm not alone. I tend to invalidate myself and tell myself I'm making it up but I'm not and I'm not alone.
@Zoup
Sorry to hear that you're feeling this way. I have the same condition, I was diagnosed a while ago now though and angina medication has helped me thankfully. I also have hypermobile EDS.
I find it interesting you say about your blood pressure dropping because that's usually indicative of orthostatic hypotension, which is another condition that sometimes coincides with POTS. POTS doesn't cause blood pressure to drop, diagnosis is often made when blood pressure drops are excluded, so you should definitely chat with your doctor about the possibility of OH. This might help you work out what's happening and lead to the right treatment.
You're still in the early days of your diagnosis, it can take some time to adjust and find things that work for you. Definitely do a little more research into it, what can make it worse and what helps it etc. That may help you feel like you're more in control.
I definitely resonate with invalidating myself and feeling like I'm making it up, especially when my medication has helped me feel more normal. But I remind myself of the day I was diagnosed. I remind myself of how I would feel without my medication. I remind myself of the fatigue I still experience. I remind myself of all the times I've had blood pooling, the times I've lost my vision. That brings me back to a place where I validate myself and realise my condition is legitimate and that this is what I'm experiencing!
I hope you find the help you need and find the right medication for you. It seems like your doctor is all over the place and doesn't know what they're doing! I've not heard of muscle strengtheners being used before. It might be worth chatting with another doctor if possible!
Take care <3
@SilentSerenityy
Hiii! Thank you for responding! It is nice to meet someone else with EDS and POTS!
I also have hEDS, although, they suspect a different type but have made a clinical diagnosis of hEDS right now. I was diagnosed with POTS and OH and I'm being medicated for both although, nothing is helping. I'm on Fludrocortisone and Midodrine for OH and it won't help. I'm at school right now and suffering so badly. I had to stop the muscle strengthener (it's been being used for POTS). I actually have two doctors for my POTS, a cardiologist and a neurologist. They both have experience with POTS, they just don't understand what's going on with me. I was prescribed Corlanor, which I've heard a lot of people are on but insurance said no and we are going through the appeals process. Being chronically ill is hard. I'm going to start looking into the reasons why I may be reacting this way to these medications. On top of POTS, OH, EDS, I also have some other conditions but I have 3 heart conditions so maybe that is why I could be reacting this way? I'll try doing some research. I messaged my neurologist on Saturday and I see my cardiologist on Wednesday. I hope they are able to figure this out. I'm tired of it. I went through four years of suffering before I got a diagnosis and now I'm still suffering because medications won't work. I just want to cry.
Thank you so much!
Hello @Zoup. First off, I want you to know that what you are going through is very valid. Having POTS is not easy. A lot of days it is painful and hard. I can't answer your questions because it is impossible for me to understand why some medications work for some and others not. I personally went through a lot of beta blockers before I found one that worked (propranolol). The heart rate can be a tricky thing to balance. I also take Northera which is a very expensive medication but through certain programs it could be covered with certain insurances. It helps with the orthostatic side of things.
I personally started having symptoms in high school and then was diagnosed senior year, so I can understand how hard it can be to have POTS but to also have it while in high school still. Being chronically ill is not easy. I've found that it has made me stronger though in terms of my determination and willpower. People my age don't have to go through something like this, but it builds up character. I am not strong headed and choose to not let people tell me what I can and cannot do. It is really important to accept the support others extend to you. Everyone's POTS journey is different. However, it is easier to go through when one is open to adapting their life. One thing about POTS for me is the number of times I pass out. I've had to adapt my coursework load, where I live, etc. Yes, it is not like others around me but it is what works for me.
You mentioned your sister is hypermobile. Has she been tested for hypermobility Ehlers-Danlos or Ehlers-Danlos in general? I was diagnosed with hEDS and it is common for people with POTS to also have a form of EDS.
@wonderfulRainbow817
Thank you so much for your reply! POTS is really difficult. I hate it. I hate POTS. I hate dealing with it. My insurance decided to cover Corlanor so I'm going to start that and have another Holter monitor. I started having issues in middle school and I was diagnosed last year. I'm not allowed to adapt my coursework or my work or anything and that has made it extremely hard. My sister has no access to medical care, so no, she has not been diagnosed. I have a clinical diagnosis by a geneticist of HEDS but they suspect a different type. I wish I was normal. All the time. All I want is to be normal.
