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.

Hi, As a mum and wife I share your thoughts exactly.I face a similar situation so understand your feelings completely. Pots came on suddenly when my only daughter was 12 weeks old. She's now 19 months and I'm still struggling daily, trying to get back to work for fear of ending up out of a job, and running our lives while my husband is out 14 hours a day. My family all have pots and my in laws were less than supportive, so I felt incredibly alone. I contacted a parenting charity who gave me a support worker 3 hours a week. She was someone to help, and someone to take to. I think it was taking this step that made everyone realise I was desperate, having gone from being a vibrant woman to a shadow of my former self. I also sought psychotherapy as I felt a sense of blame for the effect my illness was having on our lives. This made me accept that I 'should' be grieving, and that it was completely natural for anyone going through such challenge and loss. I began to grieve for the future I had planned and am now learning to accept the unknown. I'm still on the path of recovery and acceptance but I made a 'bucket list' of things I felt I had just over a year ago during my therapy (holidays abroad, running on the beach with my daughter, nights out dancing....all the things I loved and took for granted) and I'm delighted to say that I'm ticking them off slowly! It was another mum on a pots site who pointed me in the right direction at my darkest times and she's still here for me today. I'm always around if you need to chat or know that how you are feeling is perfectly normal, even if life seems the furthest from it possible xx

I have EDS 3 but the exercise is helping as it is strengthening my joints. Physio has relieved pain too so it can only be a win/win situation- that's what gave me the confidence to try despite a high heart rate.

Andy, I've been doing cardiac rehab at the local hospital since January. I can run on treadmill for 5 mins now and do a circuit with rowing, cycling and leg or arm exercises! Along with vit b12 shots, it has made a huge difference to me. It took time to build it up and it wiped me out at first but it's got me back to work part time! I'm weaning off the drugs and I think the exercise has allowed me to scale them down. Hope you're doing ok!

Freaked, my pots came on literally overnight in March 2013, 12 weeks after giving birth. To that point I had been completely fit and healthy in a happy marriage, new home to renovate and doing really well with my career. It felt like someone had taken me overnight, robbing me of my vision of the future and the motherhood I had longed for. I was bedridden with a tiny baby, trying to breastfeed. By June I hit rock bottom when it sunk in that this was here to stay. My sister had a sudden onset 2 years prior and, having witnessed the struggle she faced, I couldn't face my future. I got help in the form of psychotherapy while I waited for cardiologists to acknowledge what had happened to me, and he helped me to rebuild 'me'. He taught me to accept pots in my life, albeit an uninvited beast, and I learned to tame it, and live alongside it. I found that as I gained emotional strength to rebuild myself, I found strength to tackle the physical challenge of functioning with pots and my daughter. I began cardiac rehab and stated walking...all tiny steps at first and now I can jog on a treadmill for 5 mins or so. I found certain drugs helped and taking vit d and b12 shots made a massive difference. The small steps of progress empowered me and put me back in the driving seat. By October, I started visiting work ( I'm a primary school teacher) just for an hour a week...to say hi, make tea or do paperwork and then slowy, I built it up. On tough days, I didn't go in and on good days I stayed for longer. It was a taste of the future and it did wonders for me. Likewise I began to go to play groups and I pushed myself through the bad days. Now I'm working 2.5 days spread out through the week in an adapted role while I focus on recovery, I've managed to do so many of the things with my daughter which I felt I had been robbed of...trips to the zoo, the beach and days out with my family. Wherever I go, pots comes with me, along with a water bottle and my Nuun tabs or meds, but I'm out and functioning. Please don't give up and don't give yourself a hard time for feeling the way you do. When life bites you, it's normal in some way to fall apart or need to grieve. I still long for the carefree life I had prior to illness but I treasure what I have now because I've been taught how precious it is. My sister too is back at work and, like me, she functions with pots in her life. Our marriages and family lives have faced huge challenge but we are on the up...you are too....you just can't see it yet. Best wishes x

My sister collapsed 2 years ago (42) and was eventually diagnosed with POTS and then EDS 3. My mum (72) has started with it since the shock of losing my Dad suddenly and I (36) had an abrupt onset 12 weeks after giving birth to my only child last year. It's great that we can understand one another but awful that we have no one to lean on as we are all ill. We are all slowly improving which is the good news!

My story is similar- I was in perfect health postpartum when pots struck very suddenly and severely in March when my only daughter was just 12 weeks. My mum and sister were diagnosed with pots and then EDS when I was 38 weeks pregnant so I knew the genetics weren't looking good. I empathise and you list of symptoms were all present for me too but many have settled. Chronic diarrhoea has subsided as have the night sweats. I deal with dizziness when standing by shuffling and rocking with the pram. It's frightening to feel so ill with a little one but I'm learning to adapt to our situation and I'm starting to feel a little stronger. It's such a shock to the system- I was very active like you and you feel such a grief for the way life was and the impact on partner/family. When people don't get it, it's very isolating- that's where online support is fantastic. I've never posted my story- been in denial....but reading advice from others has truly helped and comforted me. I haven't recovered to be well enough to work or function normally and it's been a challenging start to motherhood but I'm about to try midodrine and I take a beta blocker as my HR was reaching 180. Currently I feel unwell 24/7 but try to walk everyday and its helping to keep my muscles strong. I've read all I could find about pregnancy induced pots and it seems that there's a good prognosis for recovery for those without another underlying cause such as EDS. If you are breast feeding, slow and prolonged weaning is advised to avoid sudden hormonal changes. I've managed this without difficulty over the last few months. Nuun electrolyte drinks also make me feel better at times through the day so might be worth a try to help hold sodium. Do you have family support? I've been very ill and have had to swallow my pride and ask for help. The silver lining is a wonderful ten month old who gets me through with smiles alone! I'm really thinking of you and hoping you see improvements soon xx

It sounds like we've had a similar experience in terms of hospital problems with lost referrals/ results etc. After 6 months of waiting for a TTT, mine was cancelled with 4 day's notice. I called 3 departments and had no luck rescheduling one...then I contacted PALS - (Patient Advice and Liaison) who deal with complaints and I had a new appt within ten mins. I'm learning to push the system as time goes on! I hope your treatment progresses well x

If you look up the Beighton scale and Brighton scale for EDS it will give you some idea of whether you fit the criteria. The Facebook groups are Pots uk and Uk potsies- they're great for info and support just like here. There's a hypermobilty uk support group too if EDS turns out to be a trigger.

Hi Little One, My pots came on suddenly- I can name the date in March. I gave birth at Christmas and was in perfect health to my knowledge so it can out of the blue with a funny turn...I just began to shake all over, dizzy, sweating...just as you described. My sister had a similar onset 2 years ago and we now know that our underlying cause is EDS. When I look back, there were signs- I fainted quite a few times in my teens but I always thought I was because I hadn't eaten properly. I hope you find the answers and the help you need! This site and the UK Facebook groups have been brilliant sources of information for us. STARS helpline is great for medical contacts too. Best wishes Nuala

Hi GN, I'm in Formby near Liverpool....Who do you see locally...have you had any success? Ive had difficulty locally so ended up going to London. My mum and sister have been diagnosed with pots in the last 18 months out of nowhere with sudden onsets. I followed in with sudden onset one day in March- after the birth of my daughter in December. We all have EDS but had no idea. Best wishes Nuala