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katcanny

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Everything posted by katcanny

  1. Hi to all you lovely people, i have questions that I want to put tactfully as I am a little embarrassed to raise these questions with my doctor. But as bedroom time goes is it safe for people with POTS to have normal bedroom activity? My partner is afraid I will faint/pass out and he doesn't want to do anything to cause me another hospital trip. I don't have any answers to give him and I feel horrible that this syndrome has caused yet another thing I have to worry about and effect my relationship. I'm guessing there are tips or tricks that I need to know before trying to convince my partner I'm not a ticking time bomb I hope this post doesn't offend anyone that is not my intention at all I just want to talk honestly to people that have had to experience this.
  2. Thanks for the reply yogini I did try to adjust the florinef and ended up in hospital for three days, then they put my dosage up even more than I was originally on, I thought I had best listen to them as it was from a specialist from a blood pressure clinic which I am waiting for my appointment to see early next year! I just worry about playing around with my blood pressure with meds but the dizziness is a lot better on a stronger dose of florinef and I'm not as tachy for as long when I'm standing. I am young and have a young son I'm just concerned about long term effects and I will definitely raise this with my gp he tried to lower my dose as he knows it is a powerful drug but it didn't work at least we tried it to I guess ?
  3. Thanks for the reply green! ? I hate feeling weak when I felt like superwoman a couple of months ago and I'm trying to make my son understand that some days I will feel better than others without putting this stress onto him. He needs to just be a kid it just gets hard when wants to randomly do things like play cricket or go to the zoo thinking about doing these things makes me nervous and angry that I use to be able to things like that on a whim.
  4. Thank you so much for the posts it is so nice to have kind words from people that fight the same fight! It is very uplifting to hear and gives me determination to try and get through! I went for a echo this morning but no results until a week or two and this is my main concern that it is my heart ❤️. I appreciate these posts so much as it really makes me feel like I'm not alone thank you all so very much
  5. Thanks Green, i guess it's more the worry that my legs will just give out on me. I hate feeling so weak, before being hospitalised and being discharged with POTS I was walking every day about 8 kms I was eating well feeling fantastic and then bam ? I was out of it and now I struggle daily to come to terms with my diagnosis. I tried to go back to work and ended up with a flare up and back in hospital for three days. How do you function on bad days? Are you working?
  6. Thanks Katybug! I just worry that I will have high blood pressure issues as a result of the florinef but hopefully not! So many things to consider now and today I feel sorry for myself and my son and my mum who has become somewhat a carer for me and my son at the moment. I wish I had done so much more with my son over the last 10 years before this illness reared its ugly head. I have a lot of regrets now I always thought I would be fit and healthy and now I can't walk around my shopping centre without someone pushing me in a wheelchair it is very disheartening.
  7. Hi everyone I am interested in knowing if other people are having blood pressure issues and if it is a side effect of their medication or if it is a good ole atypical symptom of POTS as I am still learning about this all. I am currently on florinef 2 per day and have always have lowish blood pressure (healthy for my age) now it is slowly creeping up to 135/83 which is now starting to hold when I stand rather than seeing and feeling that horrible postural drop! Just after some advice and reassurance from you awesome people that have helped me so much already and answered so many questions I've had! But thanks to the brain fog days forget to ask my gp!
  8. Hi Tiffany, I feel exactly what you are going through I am a mum also and recently diagnosed with POTS and recently had a flare up that had landed me in hospital again for three days but on the mend again! I've found this site really helpful and supportive if you ever want to vent please feel free to do so I am more than willing to listen! Wishing you luck and health!
  9. Thanks corina, i am guessing it was a glitch with my Fitbit as I was awake and in bed at that time it might have just come loose and not able to get a reading? It hasn't happened again and I'm feeling ok this morning as I'm sitting in bed drinking water before I start my day ? I was very tachy yesterday I'm hoping I have a better day today and my body starts responding to this up in my florinef. I have a holter monitor fitted tomorrow for 24 hours so I'm hoping if there is anything wrong with my heart ❤️ I will find it over the 24 hours. As my sister says when I have had chest pain' I'm just a bit potty' it makes me laugh ? I also have an echocardiogram in 6 days too so after all the ecgs and chest X-ray and ct scans of my chest surely after these last two tests I can get some piece knowing that there will be nothing wrong with my heart ❤️ What tests have other people had to check their chest pain wasn't heart health related?
  10. Just updating I am now out of hospital and back in the comfort of my own bed ? After numerous tests nothing was found and they think it was just a flare up of my POTS they have now put my meds up to two florinef tablets per day. Has anyone else used this dosage before? My Fitbit heart rate monitor has shown my heart rate stopped this morning so I'm starting to freak out maybe it was just a glitch? Anyone else had this problem?
  11. Thank you for everyone's kind words still in hospital, off for another ct but with dye this morning I believe to check for blood clot in the lung? Anyway they upped my fludrocortisone to 2 tablets a day and that knocked me hard last night, shortness of breath, weak, out of it brain fog, night sweats and woke up feeling like I was run over by a truck I'm really tired and weak. Has anyone else been on that dosage of fludrocortisone or florinef?
  12. Thank you for the kind words corina, and the comment TCP. Been in overnight just pumping me full of Iv fluids not helping much but really what else can they do at the hospital. All standard tests done to make sure I haven't had a heart attack and other than that all tests came back normal. So I will probably be home this afternoon! Fingers crossed
  13. Thought I would update while I'm lying in a hospital bed! Thank you for your replies it gives me some comfort that it can be a typical symptom. I came to the hospital feeling really yuck from about 3am weak legs all day then bad consistent chest pain and shortness of breath so I have been admitted and I'm guessing they will play around with my medication tomorrow fingers crossed I get to see a POTS specialist that works here
  14. Hi all, just wanting some advice from everyone that has had more experience than myself with POTS. Today has been a bad day for myself very symptomatic, tired, short of breath, generally feeling lousy and now my legs are feeling really weak like if I get up they won't hold me for very long! Has anyone else had this symptom? It is a new one for me and I'm not sure whether this is going to turn out to be a trip to the ER or not!! Please any advice would be great for me at this stage
  15. Little wins!! Showered without needing to stop and get out of the shower to recover ? ☺️ May everyone else have good shower luck today

  16. Thank you Roxy ?, i am trying to learn to deal with the effects and that every day is different. I have always been self sufficient not relying on many people other than my own mother and going from that to being scared to be alone with my son is a massive change to my personality and pride. I have a mild form of OCD I'm sure that hasn't been diagnosed and not being able to do my daily rituals with cleaning some days I have pushed myself because it stresses me when something isn't done and then the stress and over exertion make my symptoms worst! I get angry that I was the healthiest I've ever been and this has happened. I have bad days but try to be positive and am forcing myself to work to take my mind of it. It makes me so happy to talk to people on this forum I hope I can help out too even though I don't know too much at this point. ? Thanks for your reply
  17. Just as I'm about to fall asleep I jolt myself awake but as soon as I am asleep my heart rate stays between 54 and 60 until I wake. But I find that thinking about good memories make me drift off I try and put myself back in the memory and try to remember little details before I know it I am waking up to the bathroom ? thanks to the 3 litres of water! But I do the same process to get back to sleep after that! ?
  18. Why have the urge to run around like a headless chicken on steroids this time of night?! Thanks POTS for the adrenaline boost at the wrong time of day :huh:

  19. I found out I was vitamin d deficient before my diagnosis and was checked for my other vitamins but I will have to double check with my doc if vitamin b was tested for. I am currently waiting for an echocardiogram in two weeks and looking forward to that so I can rule out any heart problems, I have had chest X-ray, multiple ECGS, holter monitor whilst in hospital but unfortunately I was admitted to one of the worst hospitals around here and I couldn't get a bed in the cardiac ward but ended up on the surgical ward so I only saw my cardiologist once a day very briefly. A lot of my questions went unanswered, I don't know how other people cope with having this and raising children I'm finding it very scary I don't want anything to happen and my child be exposed and scared if I faint/pass out. Do you have children?
  20. Hi Stephanieann, thats what I am worried will happen to me, I worry about decondition aswell! I was in hospital previous to my diagnosis and was told I had a severe migraine even though I had never suffered from them before they didn't do my obs and sent me home on panadeine forte and bed rest and then three weeks later I was that unwell I ended up in hospital for a week until I got my diagnosis. Having to use a walking frame but at least now I'm able to use a walking stick so trying to find the positives for sure! ? I think that the bed rest and pain meds may have made my symptoms a whole heap worst
  21. Thank you Katybug, something I will definitely bring up to my doctor regarding doing a sleep study. My legs get really weak like I'm just going to take a step and they won't work properly so I lay down for about 30 minutes just to rest and have to keep myself awake so I don't fall asleep! Thank goodness I found this forum now I have something to read while I'm waiting for my symptoms to regulate a little.
  22. Hey potsgirl101, im new to the forum and same goes for me I have recently been diagnosed and get lonely at times too!
  23. Hi all, I have been recently diagnosed with POTS awaiting further tests and a specialist appointment. I am curious about what others have been told about having a nap during the day if you are exhausted? I have been told not too and to try and work through the exhaustion but to sit or lay and relax. My days run the same lately I wake feeling normal until I sit up, stay in bed sitting and drink a bottle of water and put on my compression stockings then time to be upright! I work in the mornings at the moment for 2 hours but by the time I get home the afternoons are horrible, brain fog chest pain and so tired I can hardly keep my eyes open. Then at about 6pm I get an adrenaline surge and run around the house cleaning and cook dinner while I have the energy to be upright to look after my 10 year old. I don't know if I should nap in the afternoon when I am feeling so out of it or it will make my symptoms worst?
  24. Thanks SarahA33 and Katybug for the replies! At the moment I am increasing my salt, having 2 litres plus of water per 24 hours, sleep elevated on pillows and wear my compression stockings every day without fail. I have been put on Florinef the doctor decreased my dose to half a tablet this week as my blood pressure was maintaining from sitting to standing but was a little high for my age. I normally have blood pressure on the low side.y main cause for concern is the chest pain and feeling out of it at certain times of the day. I am scared to be home with my son on my own incase something happens I have been lucky I am only pre syncope I have never fainted in my life and it scares me to think it could happen. Are there any other tips or tricks to get rid of brain fog and chest pain? You have both made me feel so much better with your replies thank you so much
  25. Hi all, I am a new member and have recently been diagnosed with POTS. I am 32 and a mum to a very busy 10 year old. I am very symptomatic but not sure if my symptoms are atypical and as I am still waiting for further tests I thought I might get some feedback from people that have experience or knowledge that I lack. My worst symptoms are chest pain, heart rate rise and what feels like adrenaline rushes in the evenings leaving me tachy and feeling week and shaky to conclude a lot of palpitations and brain fog when driving. Any thoughts or comments will be so much appreciated
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