mattsmum

Hi all, Just as the topic says I wanted to know if you can build up an immunity on the Florinef. I've been on 0.1mg x3 which I take in the morning after breakfast.(admittedly sometimes i am running so late that I just chugg it down with a glass of milk) The last 2 weeks my symptoms have been showing their ugly faces. My bladder which was somewhat under control on the Florinef when I first started and now it has been more frequent (to the point where my boss stares at me everytime I get up to go to the bathroom!). My legs have been so sore and I've been incredibly tired. I just feel like the meds aren't working for me anymore? Is that even possible? To boot its winter here in Australia. I would understand if it was the heat making me worse but there's only rain here! Thanks for any advice in advance. Julia

A couple of years ago before I was diagnosed I joined a gym that was a basic circuit training. At regular intervals they get you to get off whatever machine you are on and to measure your pulse rate and compare it to a chart. I was on my second machine when they played the interval and already my pulse rate was already off the chart. Had no idea then that it was because of POTS. I was so confused why it was so high I just thought I was incredibly unfit. I look back and laugh now because when I was first diagnosed with POTS my pulse rate was 225

Yes I have it too. In fact its what made my first specialist check for every type of diabetes under the sun because thats a sure symptom of it. Thankgod for florinef stopping me wanting to pee all the time from all the drink i take!

IMO if the only thing the shopper could negatively say that your hair looked abit unkept from frantically running around trying to serve 2 people at once and being extremely busy well they are really pulling at straws at trying to find something wrong with you. Shopping means service and if you were doing your best to be of service well then you are doing your job. It would be nice to go at these people but hence the word mystery shopper, can you find out who is behind it all? If not you can collectively point out to your boss that you gave excellent customer service that day and THAT is what keeps people coming back.

Hi all I just needed to vent to some people who would understand what I am going through. I started work about 3 months ago supposedly a 'part time' job with min 20 hours a week and possibility of more when people are sick etc to fill in. Up to a few weeks ago I was managing fine they were giving me 4 days with about 25 hours a week then it crept up to 28 and then bang we are into full blown 5 days a week up to about 34 hours a week. I'd be rostered a day off and they would ask me to come in because so and so was sick or so and so was on leave. I thought I could handle it. The work isn't hard. I am sitting down all day so I agreed to fill in. Then 2 weeks at 5 days a week I'm sitting at work and I am hating life. Thinking why did I agree to do this. I felt tired and then the symptoms started to flare up, glands were up, temperature was up feeling horrible. So then my senior comes by and asks AGAIN for the following week if I would mind working another rostered day off. I say to her, I need to say no this time, I worked extra last week and the week before and I am feeling run down I need to get my strength up. Well she wouldn't take no for an answer in fact she stated to me that 'part time' could mean anything up to 37.5 hours a week if they needed me. I kept telling her no til one of the other girls working nearby spoke up for me and told the senior to stop harrassing me. The big boss was on leave so I was waiting for her to come back and a week went by and then the boss had the flu and hasn't returned for another week. I had to go see the next lady in charge I tried to explain to her I just physically cannot do 5 day weeks and I know some of the girls out there are doing 6 day weeks and it was frightening me badly because I know thats something that I could not perform on a regular basis. I told her that 4 days a week is plenty and she said since that was over the original 20 hours min she didn't have a problem with that. I tried to explain to her i have a physical condition that you could want me to do all you want but I would end up passed out on the floor and end up quitting. So I thought I had it sorted then the next day the next week's roster goes up and this time instead of booking me on for 4 days and asking me to work 5 days, they just put me on for 5 days. OMG I nearly passed out then and there. I felt like everything I had said had gone in one ear and out the other. I feel like my illness has been treated like a joke. The next day was monday and I had nightshift on and I was sent home because I had developped a migrane from all the stress this has created and was pretty potsy at the same time. I just went to the local GP the next day he knows all my history and he took one look at me and said your body is telling you to stop. I know I know but how do I get work to realise I Am not messing around with them. So he's written me a letter for them I am not sure how that is going to go down but if I have to choose between my health and the job I know what I will be choosing. Sorry about the long vent. Julia

I just wanted to say I take depopriveria (sp?) which is a 3 monthly needle for birth control. You don't get periods which helps me because I am noticeably weaker with periods.

Ditto Tammy to the picking up childrens toys!!!! Oh and you can add cleaning floors to that list of killers!!! Makes you quite dizzy and symptomatic afterwards. Sigh and people don't understand they think its lazyness grr.

I'm on florinef too and i am in the same boat as you Donna. I'm always hungry. The specialist said i would put on some fluid weight with the meds but they failed to mention i would be hungry all the time. I'm so disgusted with my weight gain but i am lasting now thru work w/o being so tired so I dunno wots worse. They say they want to try me on the adrenals next half of me thinks well that would be good maybe i'd loose some weight but other half says the florinef is making me feel better symptom wise so I dunno. big hugs just do what you can to survive Julia

Loving all of these. I think we all feel some comfort from the support here its great. You know you have dysautonomia when.... People come up to you and say... You look so pale are you unwell? You'd almost consider giving birth again than going thru another TT test. Julia

Just another thankyou too Doctorguest. If you are studying Dysautonomia or know of someone/a group of people to study it, this forum is your oyster. There is no better experience than to read people who 'walk the talk'. Real experiences of how people cope with this every day defeat any text book. Heck there's even some brilliant people formulating a video which is so exciting to watch develop. Enjoy your stay with us. Sidenote: Nina I was grinning to myself reading your story a few posts up how your dr was explaining how you could still stand up at such low pressure. Reminded me of when I begged my psychologist to take my bp to prove I wasn't making things up and the astounded look on his face when it was so low the bp monitor gave an ERROR sign. He was like well you should be dead lol. Julia

I am so sorry you are really going through it all at the moment. Extra big hugs your way, be strong and keep telling yourself it can only get better from here. If your supervisor is not meeting the guidelines do have any union or anything above his head you could go to to make him see differently? I have no idea what i am talking about but it does sound like as far as your supervisor goes you are not going to get anywhere. More hugs and all the best. Julia

Just wondering if people have teeth problems. My teeth are horrible brittle lost a few during the years trying to hold onto the ones I have. I have made a fair attempt to look after them. Anyways will be curious to hear your views thanks. Julia

I'm in my 7th week of a new job and I've kept my POTS quiet like for the most part. That was until recently we had a fire alert and we were all sent to the assembly point to line up. After about standing for about 10-15mins max or so I started to get the uncomfortable feeling and there was a chair in the hallway I grabbed that and sat down. Few people including my boss gads looked at me strangely. I quietly explained I have low blood pressure and standing in one spot for a period of time makes me feel uneasy so I was just taking preventative measures. They all went into feinting stories and forgot about me soon enough and my boss was happy that I was happy having a sit down job which is perfect for me. Mind you at the time of interview for the job I did not mention POTS at all. I needed every chance possible to get that job and I did not want to risk it.

Join them into clubs where they can participate in activities without you necessarily providing the activity. My son is now 5 but at 4 he did swimming and we had mothers groups/friends houses to take them to go play. Now he is doing drama,swimming and karate. He is very active and impossible to keep up with. I ask my husband and other relatives to take him to the park and take him on a day trip on the weekend if possible. At this age they have so much energy even people with normal energy levels find it hard to keep up with little loan us POTS people. So just do the best you can thats all you can do. Oh I also forgot to mention at 4 I had him in daycare 3 days a week because I could not keep up with him. I felt guilty but at least he had friends to play with and plenty of activities much better than I could have done. Julia Mother to Matthias aged 5

Sometimes I really do not understand how people tick. Does she really want to look back on her photos and point out oh thats my friend the ill looking one. And btw how the heck are you meant to stand still all that time while the wedding is on? I recently declined part in my own sisters wedding for the same reason. You do not want to steal the show by feinting and if she can't realise that then as the PP said she never really was a friend to begin with.

Gads ok you've got me scared. Although my POTS is chronic. I can tolerate the heat way more than the cold. Has to be over 90F before i get uncomfortable although I do notice POTS symptoms more in the heat. I feel the cold so badly I burn my legs on my heater.

Hello, New here. I have finally been diagnosed with POTS. Only took 15 years but hey better late than never. I am from Melbourne Australia and when I was about 15 I had a mild dose of glandular fever where the colour never returned to my face. I look pale and sick/clammy white all the time. I feel the cold badly specially in my feet/legs. I have a little foot heater that i have burnt my legs literally on big red marks. I get tired/wear out so easily for years I thought i had CFS but all tests came up negative. I have been having afternoon naps since forever. Sensitive to medications if the label on the packet says 'May cause drowsiness' well that normally means sleepy time for me! Had 3 miscarriages til finally had my son 5 years ago now. Last 3 years the symptoms have peeked. The heat definately makes it worse. I was in a choir 2 years ago for xmas carols where i feinted for the first time so now have given that up. Now that I know what to avoid I know the familiar uncomfortable feeling after standing still for about 5 mins i feel the need to move to correct myself. I can handle that and deal with it. Its just the fatigue its ruled my life and so sick of it. So after TTT been given florinef so about to start on that today and see what happens. I am very proud to have held down a job now for 5 weeks. Its perfect i'm stitting down all day on the phone all day but as long as i'm not on my feet all day. I find it tiring after a few days when i get a day off I try to rest as much as i can to build up my strength. Anyways nice to meet you all and I'm enjoying the wealth of information on these forums. Julia