Noonoo

Thank you! I'm currently on propanolol and midodrine. I think propanolol makes me sluggish, low and tired but it stops the shakes, and if I don't they lead to scary head symptoms-almost seizure like surges, but they're not seizures. Both drugs made me worse before better and I feel like I'm in a catch 22 right now- desperately need to look after my daughter/ my 75 year old pots/ eds mum is staying over to shoulder the mornings and I'm giving insulin to my daughter from my bed so can't carry on like this. I'm scared to try something that would make me worse, and to be honest I was doing well prior to this on really low med doses. Do I ride it out and hope I get back to where I was ( cardiologist advice) or do I push to take something else, in fear of upsetting the apple cart?? I feel like the doctors are no help with these dilemmas and any symptoms they can't explain, they tell you are psychological. After a sudden onset 13 weeks PP, a cardiologist told me my heart rate of 180 was probably PND so I've got little faith left in doctors if im honest!! On a brighter note, I made it out later on today for a walk! Woohoo!

How did the SSRI help Momto Giuliana? My worst symptoms are the permanent hangover, poisoned feeling, shakes and overall weakness. My heart rate doesn't bother me in terms of fear or chest pain. Occasionally my head feels like the bloods not getting up there and I'm vacant too, rarely becoming a headache though. I just feel like my ANS goes nuts now and again and despite struggling to stay on my feet, I find it hard to sit down- I'm not anxious but I'm twitchy and can never properly rest- mind races about what I should be doing. I think it's just the oermanent state of fight/flight.

Angelloz, my cardiologist told me to increase it but I've kept an eye on my BP and don't take it if it's low. The bb is the only thing which helps with the shakes. Thanks for your support!

Thanks everyone- I'm taking loads of fluids as blood pressure is dropping 80/46 last night. Just not sure how we are going to cope- my husband has to work and anyone else trained in my daughters insulin pump works too. I'm trying not to look beyond today but I'm very frightened. I have a scheduled appt with consultant neuro in London next week but I'll never manage the 3 hour journey and I think he'll refuse to do it by phone because he did one last year only under exceptional circumstances as my daughter was newly diagnosed in hospital. My GP is clueless about pots but I've already upped my beta locker under advice of cardiologist to take away the shakes. It feels like living a nightmare...I pray it eases. Thank you all for being there xx

After 3 years of post partum onset pots and fighting my way back to work and functioning to a level that gives me some sort of life, I've had a massive relapse. I can barely function for the last 2 weeks- shaking, weak, chronic stomach issues. The mornings are horrific and I feel like I'm going through what I imagine withdrawals feel like. I have a 3 year old with type 1 diabetes needing 24 hour care and she needs her mum. Can anyone give me hope that this can happen and will pass? My mental health is in a desperate state and I'm terrified. I've climbed so far out of the blackest hole and I feel like I'm back at the bottom all over again.

My sister was diagnosed after a sudden onset of POTs as the doctor got her to do the Beighton score. I had a sudden onset a year later and was also diagnosed. Since then our mum and my niece have been diagnosed and I have a toddler who I'm guessing by the clunking and popping I hear, will go the same way. Our inheritance has been 100% which feels like really bad luck.

Has anyone weaned from either drug? I lowered my dose right down to once a day and then stopped. For 4 weeks I felt no different and was managing brilliantly without medication. Suddenly I woke up one day with horrendous shakes, headache, feeling like I was having a type of seizure. I know it wasn't a brain seizure but it felt like the autonomic storms I experienced at my onset. I've gone back on my drugs as the fear took hold of me but, 6 days in, there's no improvement. Could this be a relapse or should I assume that even after being drug free for 4 weeks that the lack of medication meant my body gave out? My doctor is useless on POTs so there's no point seeing her! I'd be grateful to hear anyone's opinions or experiences.

I've get this too... I always think it must be due to restricted blood flow. It's similar to migraine aura I've had in the past before getting POTS.

Sideofsalt, if I had another I would breastfeed but not exclusively so use formula as well. Many of my friend did it after a few weeks when their supply settled as a way of taking a break or getting a few extra hours sleep. I look back on the first few months and how tough they were when, in theory, I was still well....I think this would be the only way I would manage. It's interesting what you say about adrenaline because I didn't stop through pregnancy and was up ladders the day before my induction. I passed it all off as nesting but I look back and I was totally wired, then exhausted every night. These days I'd love that energy back!

Side of salt, all my info came from mums on a Facebook group who have been through it. My doctor also advised me to feed as long as I wanted and then wean slowly. It keeps our volume up but if we stop suddenly it seems to make symptoms worse. It's interesting that you stopped slowly but still experienced an impact. If I were lucky enough to reach the point of having another child, I would definitely combination feed, that I know already. I think it's the only way to have rest as I found expressing just as exhausting. I'll be thinking of you - let's hope things go our way x

Sideofsalt, I've heard so many stories of breastfeeding and pots being hormonal.lying triggered. Mine came on after 12 weeks when I was exclusively bf but my periods had returned 3 weeks prior to my onset. I weaned very slowly, dropping one feed a month over a three month period between 7 and 10 months pp and I was absolutely fine in terms of there being no worsening of symptoms. Did you stop quickly? I've read very mixed stories about the best strategy to take. I just hope one day it's a dilemma I face. I'm 36 and feel like time isn't on my side either. Fingers crossed for us both!

Amazing! Well done and thank you x

Thank you for your replies! I've been weaning off drugs- down from 6 tablets to just 2 per day so I would hope in the future to be off completely, especially if I can continue to increase exercise. My pregnancy was great- worked full time until 39 weeks...it was just 12 weeks after delivery that I came crashing down. There was never a life threatening situation and I had a fairly tough induction and forceps delivery which I coped well with. I'm sorry to hear that you had such a difficult time...it's really not what we dream of when we plan a family! Each doctor I've seems just says go right ahead but it's not their lives, is it? Sometimes I feel medics can be flippant because they can't give you an answer rooted in any evidence. I hope one day I'm brave enough to take the plunge...fingers crossed.

Hi all, I there anyone out there who has pregnancy induced pots who has had subsequent pregnancies...? I developed pots 12 weeks post partum out of nowhere last year. I'm by no means back to normal and I'm symptomatic pretty much all the time but I can function, work again in a way that I couldn't last year. The pangs of wanting another child are becoming very strong with so many around me having more children....can anyone shed light on how further pregnancies affected them during and after delivery? I'm starting to grieve for the future I wanted and the pain of not being able to give my little one a sibling is becoming intense. I feel I can prepare myself for a rough ride but I also have my daughter to think of...I don't want to leave her without a mum who can care for her. Any thoughts would be much appreciated xx

Srb- I'm in the UK but I'm sure there would be an equivalent for you. I voiced overwhelming concerns to my health visitor about the impact of my health on my daughter's development...I was riddled with guilt. She put a new spin on things- she said that lots of mums are flitting from going shopping to coffee with friends, to chores etc while was at home playing on the floor and reading stories all day or having friends over to play as I couldn't physically manage much more. She felt this had contributed to my daughter being ahead of her milestones as she had experienced so much 1:1 input. Her perspective helped me to see that she was loved and cherished, which is all I want for her. I pray the rest will come with time and a gritty determination to overcome challenge.