katcanny

Hi everyone, i have gained 15 kilos quite rapidly and I have the propranolol to thank for that, but I need it so I am asking everyone for their tips on keeping their weight gain down and what dietary things they have tried to help. My specialist keeps saying it’s ok it will help my blood pressure to stabilise but diabetes runs in my family and I am concerned about too much weight gain! Not to mention that none of my clothes fit anymore and I feel yuck about myself 15 kilos is a huge difference to gain in a couple of months. thanks for listening xx

I have been on florinef for a solid year 2mg a day had no weight gain until I started propranolol about 4 months ago. I have put on over 10 kgs and none of my clothes fit anymore, my specialist said oh that’s ok it will help your low blood pressure! Ok for him to say I feel so unhealthy!!

My adrenaline rushes were horrible constant uncontrollable shaking, fast breathing and they would happen at night mostly. My doc put me on a beta blocker and they have stopped I feel the surge about to happen then my body sort of jolts and then it stops, extremely weird sensation but apparently normal.

Thank you so much for your input Macca. I will definitely look into both those professionals. I am at a loss as if I keep going this way then I will lose my job which I absolutely love. I'm see dr O'Callaghan but he doesn't seem that he wants to do any testing just try me on meds and see how I go. But being like this for a year is just too much for me, my workplace and my family.

Thank you so much Macca. If you don't mind me asking are you from Melbourne? I was wondering if you were what your journey has been from diagnosis to what specialists you saw to how you are functioning now? Hope this isn't too intrusive to ask but a lot of people are overseas and i know it's different from country to country. i will definitely try and get a referral to see him!

I was referred to him after I was diagnosed in hospital, he is a specialist in POTS but he is a pharmacologist so he is all about drugs and sometimes I feel like a guinea pig without the testing just the try this see what happens. He firmly believes that POTS is based on vein function and has nothing to do with the heart just the symptoms of course so I was wanting to try and get advice what other specialists I can get my gp to refer me to see that might be able to do testing to help me live a somewhat functional life.

Thank you so much for your replies everyone!! It has made me feel a little more normal! I try not to be still for too long I manage to get to work most days but we have a nurse on staff so I know I am safe and they know about my condition. When I'm home I force myself to clean the house from top to bottom which can take up to 4 hours on and off resting here and there. But I feel that the outside world is so scary at the moment I might try and go for a little walk. My confidence in my body is at an all time low before I got sick I was walking 8 kms a night and loving life always out with my son, going for dinners, working back just to help out now I feel it has all been ripped away from me. I struggle to get up and make a school lunch. I think it's a big worry of mine that I don't want to scare or embarrass my son if something happens while we are out and I have to leave or have to call an ambulance. I really just want to go back!! But I guess everyone would if they had the chance.. I can't be thankful enough though for the support from everyone here. Having others to talk and listen too who understand makes you feel human again.

Hi all, I have been diagnosed for nearly a year and I haven't been anywhere except for doctors, specialists or hospitals. I'm really scared to go out and have to leave or have a moment and feel really bad. I feel like I'm not living, I can't take my son anywhere or do anything with him. I'm scared all the time. I've had bad thumping in my chest last night and today it stops me in my tracks and feels like my heart is going to burst and it scares me to the point where I don't want to do anything. I don't want to go to hospital they won't do anything for me there anyway. I just hate being scared all the time to live. any others stories much appreciated xx

Hi all!! I am currently seeing a pharmacologist specialising in POTS but have not had a lot of testing in regards to my heart or that I may have Reynauds due to symptoms. I was just wondering what specialists people have and who does different testing as my specialist is not being very helpful with looking into symptoms, he thinks I am doing fine but not being able to live a somewhat normal life, or about to lose my job due to being symptomatic and having to take weeks off at a time is not doing fine to me! Not to mention the impact it is having on my son and my relationships with my family and friends!!!! Thanks everyone!!! 🙏

Hi SammyJo, i have been on fludrocortisone 2 tablets every day for just about a year. At first I had weird sensations and I did get a little anxious and very grumpy and snappy without meaning to... before I knew it I was yelling full volume at one of my cats for putting hair on my couch I felt like a crazy person but it got better as my body adjusted after a couple of weeks. I also started on propranolol and that has helped my HR and also my anxiety and grumpiness although that is still there but I have read somewhere (don't quote me) that a drop in blood pressure can make you irritable. I find in the morning within the first hour I am so irritable that I ask my son to get ready for school and have breakfast and I go and get ready in a quiet environment to start the day without anger.

Hey stooshiecat, I have been diagnosed for 10 months and they still haven't found meds that can get me right but it's a process from what I've read and heard so still trying to be positive! My good days are when I can go to work for 5 hours sitting most of the day and get home to be exhausted for the rest of the night and try and help my 10 year old son with his homework and make his lunch for the next day. My bad days are bad I usually end up staying in bed trying to get up for a walk around the house every hour but that's it, i haven't been out to eat meal in a restaurant for 10 months and I can't go out on my own and need a wheelchair for shopping centres or anywhere there is a lot of motion around me other days a walking stick helps me get around to help with my dizziness I try and hide how bad I am but some days I just end up in hospital and they look after me for the night!

Hi ?? my son doesn't have POTS but did have thrush as a child in the mouth. Nilstatin is an otalmliquid you put on the tongue it worked wonders for him. Sending well wishes and prayers for you and your daughter

Hi to all the lovely people out there, i am struggling very badly with dizziness and swaying when I'm standing any tips or things that have worked for people I am willing to try anything once I start getting dizzy and sway my anxiety kicks in and then my heart rate goes up it's a double edged sword!

I never had anxiety before POTS! Now I have massive health anxiety due to having reactions to the first couple of medications my specialist had me try. Now I don't want to try any new meds and this is holding me back my specialist prescribed 1mg Valium every night but I am yet to try it he wants me to try it for one month then return to him to see if then I can try a beta blocker without having a panic attack before even taking it!

No results yet I'm hoping to call my gp tomorrow and that the results will be sent to him aswell as I can't see my specialist for three weeks! No I had to sit still for 15 minutes before I had to have my blood taken no talking or movement!

Hi haugr, i haven't started yet I was put on sudafed PE for a month and I'm having withdrawals from it, I can't tolerate even that broke out in a horrible skin rash all over my face and chest and got horrible anxiety from it which I'm slowly feeling better and the rash is clearing up after 3 days of no sudafed. I'm staying at my mums when I trial the propranolol as I have to take it over night I really don't want to even trial it as I'm concerned about breathing problems and my specialist said it could make me worst and drop my blood pressure and make me more dizzy which is what I'm trying to stop. It's been hard for me I have lost a lot I can't work, can't drive, can barely clean my house, I need help looking after my son, it's a good day if I manage to be able to get dressed. I don't want to trial things that make me worst I want to take something that will make me functional! I have only just now had blood tests for auto immune and adrenaline which should have been done months ago! It's ok for the specialists they get a **** load of money and can function while I'm living week to week and may lose my job!

Only taking florinef, have beta blocker haven't started it yet too scared to

Resting/sitting heart rate 59 - 62 walking around 95-100 housework constantly moving up to 118

Hi everyone! i have been to my specialist today and he has decided to try me on propranolol which I am very worried about as I have hypotension and a decent resting heart rate. I had to do blood tests today to check my adrenaline levels not sure what tests were done exactly and I noticed on my paperwork that for diagnosis it was phaeo? Or POTS so after researching because my specialist didn't tell me anything about what he was testing for I am even more scared that I might have a tumour in my adrenal glands. Has anyone else been through this testing before? Or have any information? And any experiences on propranolol or tips would be greatly appreciated. I will be starting on a very low dose overnight for a few days and working my way up. It has been a horrible day today and I want to pretend I am feeling better so that I can just forget about all of this.

Thank you for all the replies, I haven't tried anything to try and remedy this I try every other week to drive just around to my local milk bar which is about 3 to 4 minutes and my vision is horrible. It gets blurry and then I start to blink a lot and my heart rate goes up and then I get short of breath and dizziness. I am fine as a passenger but as soon as I have to visually look around to drive it kicks in and I can't even drive my son to school or anywhere I am so concerned that I will have an accident. I am scared generally now of just being alone with him incase something happens

Hi to all of you lovely people, i am struggling at the moment with dizziness even though my blood pressure is not dropping a lot when I am upright and driving is unbearable at the moment. I feel really dizzy driving but when I am a passenger I am ok to be in a car. My vision goes blurring when going from looking long distance to short distance like checking my speed. Has anyone else experienced similar to this and has anything helped? I am losing my life at the moment I can't drive I can't go to the shops unless I'm in a wheelchair because I feel that dizzy and I haven't been back to work I'm going to lose to my job, I can't even give my 10 year old a normal life at the moment

Thanks Kalamazoo your replies always get me thinking and researching ?

Hi everyone! It might be a silly thing to ask but ever since I have been unwell which is about 6 months now I have noticed my veins are getting more and more prominent! You could always see some of them in my arms but now they are visible everywhere? Is this normal!? Does anyone else have this?

Thanks for the input everyone! my specialist said that the sudafed is a Vaso constrictor too so since I reacted to the midodrine so badly we will try the sudafed to help with that until I get this next drug for me to try which is in the approval stage. It makes me more alert but that's about it but I'm still upping my dosage at this point. I ended up in ER on a couple of bags of fluid as my adrenaline rush I had left me with a headache for four days and really dizzy so home now and back on the sudafed today! Dizzy girls that midodrine made me so angry at everyone and I was irritated by anything and anyone is was horrible I was not myself either.

Hi Debbie Rose, our zucchini pancakes are pretty easy just use whatever basic pancake recipe you like using or we even use the premade packets when I'm feeling really yuck and then add one medium grated zucchini, one cup of grated cheese whichever cheese you prefer, pinch of salt well lets be honest extra salt because we have too and pepper stir all together and cook exactly the same as pancakes they are delish!