Noonoo Posted August 27, 2016 Report Share Posted August 27, 2016 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. Quote Link to comment Share on other sites More sharing options...
angelloz Posted August 27, 2016 Report Share Posted August 27, 2016 I have had some relapses...it is terrible...you feel like you have come so far. I have so far always gotten better again and in a much shorter length of time. Mornings were always my worst ..and after backsliding it seems like mornings are the first thing to go south. Hang in there...make sure you are doing lots of fluids etc...sometimes when we feel better we forget those things. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 27, 2016 Report Share Posted August 27, 2016 I had POTS induced by pregnancy. I also had relapses for many years. Now 13 yrs later I do seem to be in a better place. I know it's scary. I had to remember again to do more fluids as angelloz says. Maybe you should consult w your doctor about how you are feeling and medication options that you may want to try? So sorry, I know how tough it is to be so sick and be caring for a young child. Quote Link to comment Share on other sites More sharing options...
corina Posted August 28, 2016 Report Share Posted August 28, 2016 So sorry Noonoo! I agree with Katherine and Angelloz that extrs fluids may be helpful. Also consulting your doctor might help, exp re the stomach issues! I hope it's just a virus that affects your dys and hope things will calm down soon for you! Hang in there! Quote Link to comment Share on other sites More sharing options...
Noonoo Posted August 28, 2016 Author Report Share Posted August 28, 2016 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 Quote Link to comment Share on other sites More sharing options...
angelloz Posted August 28, 2016 Report Share Posted August 28, 2016 I would check in with your GP about the beta blocker. When I am doing worse they tend to drop my BP. Sending positive thoughts your way! Quote Link to comment Share on other sites More sharing options...
Noonoo Posted August 29, 2016 Author Report Share Posted August 29, 2016 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! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 30, 2016 Report Share Posted August 30, 2016 Have you tried a low dose SSRI? This really seemed to help me, so I bring it up since my POTS was also pregnancy-induced. Maybe something to discuss w your doctor. I do hope they can do a phone consult considering the travelling you would need to do. Quote Link to comment Share on other sites More sharing options...
Noonoo Posted August 30, 2016 Author Report Share Posted August 30, 2016 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. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 30, 2016 Report Share Posted August 30, 2016 That sounds very familiar to me--I think our symptoms are/were similar. I would get a lot of weird head sensations that are hard to explain. I had a lot of trembling, weakness as well. At times I would hit a wall with extreme exhaustion, just really unable to move or think or do anything at all. I felt almost OK at times lying down, but then bad sitting and horrible standing. An SSRI may help to even out the ANS--it's not well-understood. I know I have read estimates that about 50% of POTS patients see improvement on a low dose SSRI. It did take time for me to adjust to it however and I felt worse on it before I felt better. Quote Link to comment Share on other sites More sharing options...
Noonoo Posted August 30, 2016 Author Report Share Posted August 30, 2016 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! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 30, 2016 Report Share Posted August 30, 2016 hi noonoo, I'm sorry that you're going through such a difficult time. I have tremors from the adrenaline surges, they are now controlled very well with clonidine and low dose ativan. Clonidine is also a Bp med, but differs from a beta blocker. It lowers NE levels which in return decreases sympathetic activity. It has helped my tremors and flushing the most. Ativan is a benzodiazepine that is a cns depressant, so it basically slows down the cns. And works by boosting the neurotransmitter, gaba, which in return calms physical tension. These often are not tried at the same time as they can suppress the cns and cause breathing issues. I started with clonidine then added ativan a while later. propranolol has been hugely helpful for my pots, too. Wishing you and your family the best! Sarah Quote Link to comment Share on other sites More sharing options...
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