katcanny

Yeah they did full blood work and checked electrolytes too! As usual everything normal, no hyperventilating they checked my oxygen and it was at 98 I was breathing slowly and deeply maybe that's just the way my body responds to adrenaline I don't know. I love feedback on others experiences because I can feel somewhat normal and that it is just POTS related. The last thing I want is to start having health anxiety on top of everything else at the moment. I was on a birth control pill that might have caused this from what I have read about it I am now off that and on a safer one so here's hoping ?

Hi everyone! I had the weirdest set of symptoms happen the other day that landed me in the ER again!! I was sitting with feet elevated completely relaxed then my left arm had pain and pins and needles so I got a little concerned I then lay down fully to try and recover, then bad chest pain and pins and needles in both hands and feet and my feet were ice cold! My partner rushed me to emergency which on the way I thought I may pass out but didn't luckily by the time I got there my whole body was shaking so badly I didn't know what was happening! First doc said anxiety which I have never had I pushed the point and he sent me through to get looked at and the next said perhaps an adrenaline surge? Anyone else experienced these sorts of symptoms? It gives me some comfort to know that I'm not alone and these symptoms can be normal for POTS

Thanks so much for the input everyone! It always makes me feel better when I'm feeling unwell or down to talk to others that have much more experience than I do with all of this!

Hi to all! i am still new to all of this and I am finding at the moment that I am having reactions and intolerances to a lot of things I never had a problem with.. I have had my hair dyed and now have had a reaction which has required medicated lotion to reverse, I can't have lemonade anymore because I get heart palpitations, I have Vegemite and have heart burn! My life is yuck enough at the moment without having to add more on top. Could it be the medication I'm taking florinef? Has anyone got any advice on hair dyes or what to drink other than water or Powerade! All advice much appreciated!!

Hi everyone, I stumbled across something saying that people that have POTS And take florinef should not take YAZ FLEX and I have been on this pill for about 6 years! And information anyone has would be helpful so I can mention it to my gp and try and swap my contraception pill for something else!

We already tried to cut down the florinef from 1 to a half of 1 but then I ended up in hospital for 3 days getting discharged on 2 per day! I was feeling great on just one tablet but then tried to wean down, I guess I had to try! I wish your daughter all the luck in this world

Thank you for the replies ? I'm off to see my gp on Monday so I will talk to him about it then, whenever I seem to feel off and having a symptomatic day my blood pressure goes up when I'm walking around and I feel very dizzy all day, I have my first specialist appointment in a months time so I am very much looking forward to getting some sort of an answer as to what type of POTS I have. My gp is great and tries really hard but I need to see a specialist as I'm only on florinef at the moment as my bp was dropping when standing! Maybe the florinef is doing its job and I just feel dizzy it's so confusing and at the moment I'm really upset by this whole horrible illness

Hi to all! I seem to be getting new symptoms today when I am upright I am very dizzy but my heart rate is not going up very high but my blood pressure is rising? I'm confused does this need to be checked out? I'm on florinef not sure if that has anything to do with it? Does anyone else have higher blood pressure when standing? Mine was dropping!

Thank you so very much that was so informative, I am trying to be the perfect patient I take florinef, eat small regular meals, drink 3 litres of water per day, have upped my salt, wear compression stockings even in 30 degree heat and try and be upright for as long as I can each and every day.. I'm hoping they can give me something to help me I have a 10 year old son and watching him not being able to do the things we use especially since it's the school holidays is killing me! I feel like the worst mum in the world at the moment I hate being like this it's not fair on him!

Thanks Macca, did you go there? I don't know what to expect I just need to get something to stop feeling like this and start on the road to recovery! I start work the week before my appointment. How long does testing usually take to be put on some form of medication?

Hi to all, I have finally got my first appointment with a specialist at a hypertension clinic in about a month! Anyone have experience with a hypertension clinic? I get very nervous when I don't know what to expect! Would love any feedback

Thank you all for the replies! I will definitely make sure I get the anaesthesia without the epinephrine when I try and get it extracted! Trying to fight off tonsillitis at the moment on my second course of antibiotics think I may need a third!

Thank you for the kind words momtoguiliana I have my fingers crossed too, I love my job and really don't want to lose it! As I have just recently been diagnosed and fallen ill it's been a really hard adjustment for everyone in my household, I have a 10 year old son and my partner who I have been with for 7 years is struggling with the change in the relationship dynamic. I rely heavily on my own mother lucky for me she is still young enough to run me around and look after me when I need it, I don't know what I'd do without her! It's a really hard thing to deal with having a chronic illness and I think I'm starting to get anxiety about it. Is that normal? I get scared when I am alone with my son just incase I pass out or feel really unwell with chest pains.

Thank you so much for the advice I will have to look up that drs book and techniques. I went to my gp but he is on holidays so another saw me and then I ended up going to ER as he wanted me to be checked for a chest infection aswell! Luckily after a couple of hours, chest X-ray, ecg, blood test I was on my way home again! Thankfully nothing sinister just symptomatic from the tonsillitis, I really need to see this specialist my life is so far from normal at the moment I am only on florinef and it helps some but not with my tachycardia! I have to go back to work the last week of January so I need to try and work out how I can deal with these symptoms otherwise I will lose my job

Hi to all the lovely people on here! After some advice and reassurance please.. I have tonsillitis, it is the first time I have had a virus since being diagnosed with POTS. I am not on anything other than fludrocortisone as I haven't seen a specialist yet! so being sick has caused a lot of chest pain and palpitations and shortness of breath and dizziness. Is there anything I can do to ease my symptoms they make me anxious and that makes me feel worst.

Thank you for the advice, at the moment that is on the back burner as I have come down with tonsillitis it is the first time I have been sick with a virus since I was diagnosed and I'm not doing too well. But on antibiotics now so I'm hoping by the repeat I'll be back to my somewhat not normal but normal health! It's not a great way to start the year at all and I haven't had tonsillitis since I was a child so no idea where or why I ended up with it but at least I didn't end up in hospital!!!! Yay for me

Thank you so very much! It has made my night hearing what you said sounds so positive. I am unsure what type of POTS I have as yet, I am lucky that I was diagnosed quite early from what I have read it can be a long process. I am trying to adjust to this and have become very paranoid about heart rate and going out anywhere incase I feel horrible. My mum has pretty much had to be around me all the time which is hard as I'm a mum myself but I don't trust my body anymore! I am more than happy to get up and clean the house feeling crappy as long as someone is there incase something happens to me. I don't want to decondition myself anymore that what I already did. Any hints or tips for me?

Hi all!! just wondering if anyone from Aus has seen Dr O'Callaghan as a specialist for POTS? I am awaiting my appointment apparently from what I have heard from staff at the hospital he is ridiculously obsessed with POTS. Just want a heads up as to what I can expect

Hi everyone! One of my teeth has cracked in half I need to get it extracted and I am freaking out! I don't know what I should do as I've read that people have had bad experiences and flare ups so I need so good advice I can take to my dentist so both he and myself are informed! Being so close to Christmas I don't want to have a flare up and end up in hospital just before or during Christmas! Please help! It is one of my front teeth and looks horrible it would just be better out as my teeth are so brittle and break all the time

Hi everyone, i have been on the 2mg of florinef for a month now and it has helped my blood pressure posturally there is barely a drop or rise depending on what my body decides to do on the day. I wear my compression stockings knee high every single day even in this Aussie heat as it was 34 degrees yesterday and I was still wearing them!!! I have come to realise that my legs go week before I get a flare up of my symptoms generally I am functional for 3 weeks and then I get a flare up lasting about 4 days before feeling ok again. Does anyone else get regular flare ups?

Thank you so much Kim for the advice! Since I'm still in the stage of waiting to see a specialist and only on one medication I was trying to look better to try and make myself feel somewhat normal! I will definitely mention this to my hairdresser when I go again in another 4 weeks. My doc gave me a lotion that has really helped so I'm feeling better but hated having my symptoms jump around so much and feeling terrible but at least I had fabulous hair! ?

Hi Katie, Im still yuck today but my doc gave me a lotion and that has taken the redness and itchiness away from my scalp rash so thats a good thing! It's still lumpy but that is looking and feeling better! I am really dizzy today and short of breath with chest pains here and there, I just want to lay in bed all day or go to the hospital I think they are my two options! But I always get a flare up when I have so much to do! I have a nephews bday today and my sons school Christmas ? carols tonight at 7pm and I know if I go to hospital they will keep me in and I'll miss out! I hate days like today when I shouldn't be sick and should be able to just be a mum and not worry about having to go the hospital or breathing or heart rate or any of the stupid things that's comes with this syndrome! Katie Im sorry to hear that you have a scalp rash I feel for you honestly I do, I scratch at night when I'm sleeping I don't even realise it until the morning when i wake up all sore and swollen!

Thank you so much for the replies! I held off going to the hospital last night and fought through it! Still a little bit tachy today and very dizzy but taking it easy doing little bits then sitting down to get my HR down again! I was trying to come up with a reason why I was so tachy and I thought it may have been the reaction to the hair dye and then as I was thinking what else I had done was started vitamin D3 tablets and I read that they can give you heart palpitations and high heart rate! Has anyone else had this with vitamin D3?

Hi to all you lovely people, Just wanting some advice, I am really tachy today my heart feels like it is jumping out of my chest every hour but my HR is within normal range but high for me resting. Just to make my life easier lol I got my hair dyed two days ago and had a reaction to the dye so have a rash over my head and some swelling in my forehead so currently feel like I'm growing a horn! ? I feel like rubbish but don't want to make a hospital trip as my doctor has finished for the day! What do people do to try and relax when they are tachy and have palpitations? I am laying on the couch as earlier I was out paying bills and thought I couldn't breathe, my HR Shot up and I got a hot flush all of a sudden my chest felt weird I'm not sure if it was a panic attack or just being a bit potsy today?

Thank you so much Katybug I will have to show these to my partner, I absolutely appreciate the support I am getting off this forum what wonderful people brought together by something not so wonderful