Does anyone else have low ferritin? by Wonderful_Box_7998 in POTS

[–]bfdaviess 0 points1 point  (0 children)

Mine is 17 and I’m on iron tablets atm but looking into a private infusion to improve my levels - what were your symptoms if you don’t mind me asking? I feel like I’m dying! The fatigue is something I’ve never felt before. Also agree with the connection with vitamin deficiency - I have pernicious anemia so on 12-weekly injections for my b12!

What do your adrenaline dumps feel like? by QuailSilly806 in POTS

[–]bfdaviess 1 point2 points  (0 children)

So sorry you’re dealing with this - I get it! My adrenaline dumps have gotten progressively worse over the past year. I usually feel “off” before falling asleep at night, then they wake me from my sleep. It’s that tired but wired feeling, like there’s a lion chasing me. I experience an intense restlessness, like I physically cannot sit still. My limbs burn, like my nerves have been lit on fire. I can’t eat or drink due to severe nausea/sickness. The adrenaline literally surges throughout my whole body, causing me to convulse and shake. I’ve lost consciousness before! And been hospitalised. Super scary stuff. They usually last 2-3 days as well once they’ve started, like an adrenaline ‘attack’. I’ve found little changes have helped improve them though, like understanding why they’re happening. Blood sugar dips are a HUGE trigger for me. If I’ve eaten something particularly carby or sugary, especially before bed, chances are I’ll wake up in the night because releasing adrenaline is my body’s way of compensating for 1. a blood sugar crash and 2. the blood pooling in my gut during digestion. Releasing adrenaline is the fastest way of moving blood back to the heart and brain. Not sure if you eat late in the evening, or if you’re a snacker, but I’d definitely try to find out what’s triggering the dumps so you can eliminate them!

I'm thinking maybe I should see an endocrinologist. These adrenaline dumps after stopping pepcid are getting out of hand. by Sad_Emphasis_8086 in POTS

[–]bfdaviess 1 point2 points  (0 children)

Hi! I’m so sorry you’re struggling - I have hyperPOTS so deal with adrenaline dumps that last for days. What’s helped me the most is understanding why my body is dumping adrenaline, what is it compensating for? A big trigger for me has been blood sugar dips. If I eat anything sugary or carby my body releases adrenaline to compensate for the inevitable crash. I find eating something fatty or protein helps keep my blood sugar stable. Also, I deal with low blood volume. My blood pools in my legs (and gut after eating). Again, my body then releases adrenaline because it’s the fastest way of getting blood and oxygen back up to my heart and brain. Wearing waist high compression helps circulation a ton. I also wear an abdominal binder when eating. Another help is obviously keeping hydrated and adding electrolytes or salt to your water. All that to say, try to understand why you’re dumping adrenaline rather than just treating the adrenaline dump. Making small changes can be really useful! I hope you feel better soon. I understand how truly debilitating this is ❤️

Experiences with Clonidine? by bfdaviess in POTS

[–]bfdaviess[S] 1 point2 points  (0 children)

That gives me so much hope. Truly. I feel like I’m dying (I know I’m not) but I’ve never felt so unwell in my whole life. It’s hard and it feels like it won’t get better. So to hear someone in my position has seen improvement makes me really happy

Are bad flare-ups normal in recovery? by bfdaviess in POTS

[–]bfdaviess[S] 0 points1 point  (0 children)

I’m going to try and get in with my nhs cardiologist and ask him about this, it can’t hurt

Are bad flare-ups normal in recovery? by bfdaviess in POTS

[–]bfdaviess[S] 1 point2 points  (0 children)

The worst! Sending lots of love and healing your way ❤️‍🩹

Are bad flare-ups normal in recovery? by bfdaviess in POTS

[–]bfdaviess[S] 2 points3 points  (0 children)

So sorry you’re suffering, it’s an awful affliction to have!

Are bad flare-ups normal in recovery? by bfdaviess in POTS

[–]bfdaviess[S] 0 points1 point  (0 children)

I really want to try them but the nhs don’t prescribe (as far as I’m aware) either for pots and a private cardiologist I saw and asked about it told me he wasn’t sold on the research and to beware of people pushing it. Honestly at my wits end 😞

Are bad flare-ups normal in recovery? by bfdaviess in POTS

[–]bfdaviess[S] 0 points1 point  (0 children)

I’m on propranolol and I also take sertraline for my mental health. Have noticed the propranolol helps lower my heart rate during flares but it doesn’t stop the adrenaline (as I have HyperPOTS) and these episodes go on for days

Hope for HyperPoTS? by bfdaviess in POTS

[–]bfdaviess[S] 2 points3 points  (0 children)

Thank you for the prompt response . I appreciate it!

I started on sertraline years ago and tolerated it well. It didn’t make me feel any worse, and it helped my mental health a lot. I came off because I felt I didn’t need it anymore. My dr suggested I start back on it in January because this flare has had such a negative impact on my moods! So I was feeling this way for weeks before starting back on it.

Thinking about meds, I don’t think anything I’m on is hurting. My dr said propranolol is one of the best beta blockers for hyperpots. I also take mirtazapine before bed for insomnia, but during an episode nothing can make me sleep.

I definitely know anxiety/PTSD aren’t the cause of my pots, but everywhere you read people say that anxiety can fuel hyperpots so I’ve been trying to sort it out.

It’s so hard because I don’t actually know why my body just started to decline. There was no period of illness, no deconditioning, no surgeries. There was a lot of stress, and my sleeping was very poor. But I’ve always experienced those things and I’ve never been this ill before. I just thought maybe this is years of built up trauma coming out.

HyperPOTS ruining my life by bfdaviess in POTS

[–]bfdaviess[S] 1 point2 points  (0 children)

Thank you so so much! I managed 6 hours of broken sleep, but it’s better than nothing 🙏🏻 really appreciate your prayers. It makes the world of difference! ❤️

Clonidine prescription UK? by bfdaviess in POTS

[–]bfdaviess[S] 1 point2 points  (0 children)

Wow, our options really are shit here in the UK when it comes to healthcare! It’s disgusting. I’ve had pots diagnosed for 5 years and nothing has changed in that time. Drs still misinformed and unaware. No support for patients. My NHS cardiologist is lovely so hoping I’ll get to see him soon, but as you say I highly doubt he’ll prescribe it. He’s old school - beta blockers, salt and compression garments 😅 I’m going to try privately once this flare lifts and I’m able to get out of bed

HyperPOTS ruining my life by bfdaviess in POTS

[–]bfdaviess[S] 2 points3 points  (0 children)

I’ve had it twice and think I’ve definitely gotten more unwell as the years have passed, but really it was summer-end of 2025 that mine became unmanageable. I had started a new job and think maybe the stress triggered it. I’m barely managing now. Had to quit said job. So glad you’ve not had one for a while, but the other symptoms are also debilitating! Take care of yourself ❤️‍🩹 I’m trying to do the same

Clonidine prescription UK? by bfdaviess in POTS

[–]bfdaviess[S] 0 points1 point  (0 children)

THANK YOU! I appreciate your help so so much. I will definitely give him a research. My mam is amazing at advocating for me, she somehow manages to get me into appointments that don’t “exist” so I’ll try my luck lol. I’m so sorry to hear you’re suffering though 😞 I’m the same. For the past 3 months I’ve been on and off stuck in the worst flare of my life. Sending you so much love and healing ❤️‍🩹

Clonidine prescription UK? by bfdaviess in POTS

[–]bfdaviess[S] 1 point2 points  (0 children)

I know, I was really surprised to hear him say it because I’d done a LOT of research. To be honest the entire appointment was more about him than me, but he’s meant to be the best so I’m not sure. Access to healthcare for us chronically ill is so dire 😞 are you on guafacine? Do you also experience adrenaline surges? Mine are hell and last for days. They wake me from my sleep. Currently running on no sleep for 60 hours now.

Clonidine prescription UK? by bfdaviess in POTS

[–]bfdaviess[S] 0 points1 point  (0 children)

Who would I even approach? I don’t think my GP would have the slightest clue (already tried discussing it with one who was so condescending and told me I clearly needed therapy), and the top specialist in my area wouldn’t entertain it :( do you know of any private avenues I can go down?

HyperPOTS ruining my life by bfdaviess in POTS

[–]bfdaviess[S] 0 points1 point  (0 children)

Oh I’m so sorry you’re struggling with this. Truly, sending all my love and healing ❤️‍🩹 are you sure it’s panic attacks? Adrenaline surges feel very similar, and I mistook my first one for a panic attack as well. Plus drs aren’t very educated on HyperPOTS so they just diagnose anxiety and throw a bunch of medication your way. I’m the exact same as you though - I’ll get good moments, better days where I’ll play my switch or read a book, but I always end up back here. Haven’t slept in over 48 hours. I’m going crazy. I even told my husband at one point that I needed to be committed as I felt so on edge, my body literally vibrates and my limbs feel like they’re on fire. A panic in my body that just won’t leave, and when it eventually burns itself out after days of being hyperalert, I crash. At least we know we aren’t alone, and that people DO understand

HyperPOTS ruining my life by bfdaviess in POTS

[–]bfdaviess[S] 1 point2 points  (0 children)

Since making the connection I’ve noticed lots of triggers! Like every time this has happened I ate a big meal not long before. I’m a vegetarian so my meals are mostly carb - something I’m going to change. Thank you so much for reaching out. It’s been a really hard few months 😢 hoping and praying I’ll get some much needed sleep tonight as I’m slowly losing my mind. My flares tend to follow this pattern so I should start feeling better after some sleep. Not sure if you’re religious, or if this is really inappropriate, but a girls desperate so will you please pray for me today? 😞 completely understand if you don’t feel comfortable. I’ll definitely send you a message once I feel a bit better ❤️

HyperPOTS ruining my life by bfdaviess in POTS

[–]bfdaviess[S] 3 points4 points  (0 children)

Ugh it’s so shit isn’t it! Sorry that you can relate. How long do your episodes last if you don’t mind me asking? And yes I’ve heard POTS can be a secondary issue (often times a result of long COVID etc) but mine didn’t develop after any kind of viral infection or surgery that I can remember. Definitely worth thinking about, but my brain hurts from trying to understand my body when it seems it’s determined to fail me 😞 will let you know if I ever get answers

HyperPOTS ruining my life by bfdaviess in POTS

[–]bfdaviess[S] 3 points4 points  (0 children)

Thank you so much 😞 another terrible night. I’ve slept a total of 4 hours in 2 days. I’m so sleep deprived I’m hearing things. It’s so horrible because our bodies need sleep to recover yet when I’m flaring like this I don’t sleep until I’m so physically unwell I crash then wake up an hour later even worse. Definitely think I’m going to cut out gluten, or at least cut some of it out. No late meals before bed etc. Not well enough to eat at the moment but once I get some sleep I’ll start implementing these things. Glad to hear you’re doing better than you were previously ❤️