katcanny

Thank you for the responses, I get bad brain fog and afternoon fatigue where I will fall asleep but I won’t even realise I have until I have woken up an hour or so later. My specialist wants me to try this and hope that I can come off fludrocortisone as I’ve been on it for three years now and my weight gain is becoming an issue. 40 kgs I have put on and everything hurts I’m not use to being so heavy. I’m worried about how I’ll feel coming down once it wears off. Do either of you find any effects when it wears off?

My PoTs was debilitating when I first got diagnosed I wish I had known before I had my son, if I knew I would have thought twice about having a child. Everyday I am guilty of not being able to do something for him that a normal parent can and it rips me apart. My son is great and is understanding but because of all of this he has health anxiety and doesn’t want to go to a doctor because he is worried he will end up in hospital just like I have so many times. It’s definitely something to seriously consider

Hi guys anyone got any experience with using dexamphetamine while having PoTs?

Hi all 😊 my specialist has just decided that he wants to try me on dexamphetamine I have no idea why and quite frankly I am very nervous about it, I don’t want to end up in a tachycardia episode and end up in hospital and scare my son. He also thinks that I may have vestibular migraine but didn’t explain it much and said that testing was really hard so if the dexamphetamine doesn’t do anything I’ll try a drug to treat the migraine and if it works then it’s a diagnosis? Has anyone else tried dexamphetamine who has PoTs? And any info on the vestibular migraine from other people who have experienced it would be great rather than relying on doctor google kat xx

They are great achievements Pistol congratulations! It’s so great that you were able to go to your daughters dance recital, as a mum I know how hard it is to miss out on a lot of events. You should be proud of your exercise achievements too! That is fantastic! That is my next goal

Thank you everyone for the support but no one has mentioned their own achievements! This community is great and we need to celebrate the small things together

This was one of my scary symptoms and I ended up being rushed to hospital shaking violently from head to toe with adrenaline running through after a shower, two things changed my shower problems. I only had showers at night once everyone is in bed and I can take my time and then go straight to bed myself and I continue to do this after three years after being diagnosed and I went on propranolol to block my adrenaline and that helped a lot also. I wish you all the best and remember that even a wash with some soapy water and a face washer is sometimes all we can handle on our bad days. You are not alone

I thought I would share with all of the other members out there that would find my news somewhat of an achievement. I stood up and showered without a shower chair for the first time in nearly three years! It was scary and nerve racking but after many manual heart rate checks and my inner voice reminding me that my shower chair was right in front of me incase I needed it, I soldiered on and made it threw. Am I exhausted... yes but some little, tiny bit of my old self has been restored. Please share what you have done that has been an achievement anything at all!!

Myself and my partner love Ip Man the whole trilogy is amazing and ronin 47 was great for a western movie too! We have watched all the Bruce Lee films and crouching tiger hidden dragon and can I say I’m partial to Kung fu Panda

I get chills/pins and needles sensation all the time for no reason at all, in different parts of my body. This has happened for the past nearly three years since I was diagnosed. I get them in my arms, in my back, in my buttocks, in the back of my head it’s an odd feeling but I can get it laying down too so I don’t think it has anything to do with orthostatic intolerance? It remains a mystery to myself I have never bothered to ask a doctor because half the time I have that many symptoms the doctor gets overwhelmed so I just go with the worst symptoms

Hi, sorry you are having such a rough time. I have been on Florinef since I was diagnosed 2 years and 2 months ago and without it, I wouldn’t be able to function. I went from having to use a walker to a walking stick to now being able to stand on my own for a little while anyway. It does take time to do its job and I did have side effects but it was mostly weight gain from retaining fluid. You have to drink a lot of water though and I drink about 3 litres per day and the best tip I can offer is to drink a full bottle of water before you get out of bed in the morning, I have done this every morning for two years and it didn’t help at first but after a little while it made a huge difference.

I use to love a shower in the morning I just cannot do it anymore, I shower at about 8:30pm so my food has somewhat digested from dinner, I have mentally and physically rested a little before and I have a shower chair that I use everytime. Sometimes I just sit there and can’t wash my hair but it feels nice to just have water run over you sometimes. I have learnt to have showers luke warm and at the moment it’s summer time in Australia so I’m ok with that right now

Thank you for the helpful tips I will definitely look into weight watchers online! I just got home from ER after being admitted overnight with worst than normal chest pain and pain down my arm and in my neck. One doc said I am carrying a lot of fluid I overheard a nurse saying my love is sluggish maybe that is the cause for this extra pain? What have people done for too much fluid retention?

I’m on 3x 10mg tablets daily. I take fludrocortisone aswell but I was on that for a year before starting propranolol and no weight gain at all. My specialist wants me to cut back on my meds but I’m worried that I will go back to not being able to function. My chest pain has been bad the past week I’m thinking it might be from the extra weight I’m carrying a though. It’s very frustrating I would like for a day or two to not worry I’m having a heart attack. How have you been doing?

Hey m@t, still piling on the weight haha! I thought it best to wait until after the holiday period to watch my calories so starting this coming week I’m going to be all over it! I hate the way my body feels and looks and I’m starting to have a flare up so that’s not helping either. Have you found anything helpful with weight loss? I hate that propranolol did this to me but it makes me able to function as a somewhat human being