Postural Hypotension

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I’m new here!

Hi, my name is Jill. I'm here because I need some help staying positive. A year of no working, thousands in credit card debt, car is only a few miles away from breaking down forever, waiting for my second appeal with disability to happen, all while my friends and family still can’t understand why I’m like this.

#MightyTogether #Anxiety #Depression #BorderlinePersonalityDisorder #Migraine #ADHD #Fibromyalgia #Hypersomnia #OCD #ChronicDailyHeadache #InappropriateSinusTachycardia #PosturalHypotension #DegenerativeDiscDisease

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Gotta catch ‘em all

The last few weeks have been particularly hard on me.

Mentally, I’m mostly okay. Physically, I’m not. And that’s caused me to question a lot of things, wonder how it got to this point, increasing the severity of incidents where I won’t take painkillers.

I’m being referred to cardiology for a tilt table test.

In April, I was told I had low blood pressure but they didn’t seem too worried. At the end of May after worsening lightheadedness, I was told the same, and I was basically just told just to eat more and take iron supplements. And then last week, I went back again.

I initially made the appointment for something else a month before (I had to wait for a month), but then the lightheadedness got worse, so I told them about it again. I told them I had taken iron supplements, I was eating healthier than ever, I was staying hydrated, I was staying active, I was just really doing all the right things. And again it was low.

They’ve diagnosed me with postural hypotension in the meantime and told me to try compression socks for a week, and then if that didn’t work to call them and they’d refer me. So here we are. I get to have a blood test in September while I wait to be seen.

My sinus issues had a major flare up. I was so miserable with it that I sent a email basically begging them to give me an appointment (I was referred back in February but waiting list is apparently a year) because it was beginning to affect my mental health, and I get to see them in October.

It’s affected my hearing, so I had to chase up my ENT appointment. I hope it is just the sinus issues causing it, and not a third relapse of my ear problem, especially as everything seemed perfect last time I saw them. It would be nice to celebrate the first winter in 11 years without an ear infection.

And then of course, my referral for heartburn/ acid reflux. I see the doctors for a one-month review, which will end in the referral they wanted to do (because I had suffered for at least 5 years w/out diagnostics) but held off on. The medication they put me on has somewhat helped, but I’m still having to take gaviscon most days.

Finally, the chronic pain. It’s been difficult these past two days, and after (stupidly) lifting a sofa up because the cat pushed her toy under it (and then she herself went under it so I had to call my sister because I physically couldn’t lift it for much longer), it’s been worse. I still forget that I’m not really supposed to do things like that, and I always pay the price (pun not intended, but yeah cause volatarol is expensive).

I’m just really very tired. I remind myself it could be worse, which is probably what has helped me stay positive and mentally mostly okay, but sometimes it gets to me. Particularly when it’s yet another tablet added to my daily medication. It makes me tired, and I think “it only gets worse as I get older”. I want to stop them, but I know I can’t. I ended up in hospital the last two times I did.

Or another time it bothers me is when everything is getting worse/ is bad/ is happening all at the same time. This post doesn’t even cover all of it, but at this point I’m too tired to write anymore. Speaking of tired, I’ve only had 5 hours sleep each day for the last 3 days. I wake up early and then typically can’t get back to sleep because of pain and insomnia :))

#ChronicPain #Depression #GastroesophagealRefluxDisease #Heartburn #AcidReflux #BloodPressure #Lowbloodpressure #PosturalHypotension #Hospital #DoctorsAppointments #Doctors #Sinus #HearingLoss #ent #cardiology #Hearing #Medication #MentalHealth #Pain #BackPain #Insomnia #Painsomnia


I’m new here!

Hi, my name is Aisling! I am here because although being young (18) my health has taken a turn for the worse, especially within the past year. I am struggling with coming to terms with the fact that I am now physically disabled and will be for the rest of my life and that my future won't exactly look like the way I've planned. I wish to find a community of people I can relate to and talk to about our daily struggles of chronic illness and chronic pain, along with the mental health aspects of that. I have been diagnosed with hEDS, MCAS, POTS, chronic tachycardia, chronic hypotension, migraines, ASD, anxiety, and phonophobia. I also have chronic acid reflux, insomnia, chronic fatigue, sleep attacks, and something wrong with my nervous system that my doctors are currently trying to figure out. I currently use a cane in my day to day life as well as an assortment of compression wear, joint braces and the like. Hope to find connections here! Feel free to reach out:)

#MightyTogether #AutismSpectrumDisorder #Anxiety #Migraine #ehlers-DanlosSyndrome #OrthostaticHypotension #PosturalHypotension


I’m new here!

Hi, my name is Kat_EDSlife. I'm here because I’ve read many articles that helped me feel like I wasn’t alone. I have a very complex health life, my husband has a very complex health life, and my son is 6 and already starting his complex health life.

#MightyTogether #ehlers-DanlosSyndrome #Migraine #Fibromyalgia #Anxiety #Depression #Asthma #PosturalHypotension #PostpartumDepression #OrthostaticHypotension


I'm new here!

Hi, my name is Ciorstaidh. I'm here because I have a genetic condition and also being investigated for PoTS. I'd like some support on how to treat and manage PoTS.

#MightyTogether #AutismSpectrumDisorder #Anxiety #OrthostaticHypotension #PosturalHypotension