flop

Thanks for all the great advice so far. I saw my psychologist the other day and he thinks a chair would be a good idea. He also disagrees with others that have told me that I will allow myself to "become disabled". His assessment of my attitude was that I was apprehensive and reluctant to use a chair but willing to view it as a way of enabling me to keep working. I also saw my GP today (PCP). Before I even got a chance to tell him that I wanted to ask his opinion about me considering a chair he jumped in. I was describing my current POTS hole and he could tell that I must be bad as I took my Mum in with me to the appointment for support. He said "what about using a chair, you know you wouldn't be the first ----- to use a wheelchair, it is allowed!". He said that he will fully back my application for "access to work" funding for a chair (I would never be able to lift a standard heavy NHS one in and out of the car) and also for a disabled parking permit and disability living allowance. WOW things seem to be changing very quickly in my attitude to my health problem. I have always tried to just get on with things and decline help - this is a major step for me to admit that I am "disabled" let alone make it obvious for everyone by using a chair. I'm not worried about the attitude of people out and about - in fact it will probably stop me from feeling guilty for using lifts and not offering to give my seat on the bus to elderly people. I'm more worried about the attitude and reaction of my friends and work collegues. Most of them have no idea what life feels like for me right now and I think they will think that I am being melodramatic and OTT / attention seeking. How do I introduce the idea to them? Flop

Rita, can you please describe the hairdryer stand (I have very poor imagination) - sounds like a wonderful idea but I would need to describe it to try and find one in the UK. Thanks, Flop

Jacquie, how did your doctors visit go - I hope they could give you some sensible advice about the midodrine and if it is anything to do with the pains you're getting. ((((((HUGS)))))) Flop

Willows - sorry to hear that you have got glaucoma. However don't dispair there are lots of different meds to control glaucoma and prevent visual loss. Also if the meds don't work or upset the POTS they might be able to do an operation (sounds awful I know but not that bad) to allow drainage of the excess fluid to reduce the pressure. Did they tell you how high your pressures were? I'm guessing they can't be too bad or they wouldn't be waiting 4 months before treating you. The night vision is likely the glaucoma but the blurry/misty stuff that comes and goes sounds much more like low BP so not permanent just maddening. Can you glue / paint owls whilst lying on your back with your legs up the wall? That would be worth a picture! A new slant for your charity display - Ami the amazing upside-down sorceress suspended from the ceiling of your owlery in a climbing harness (make sure you've got some cycling shorts to put under that dress!)! Flop

I just wanted to echo the above post - you can't make a decision unless you understand what the doctor wants to do. Perhaps you could have a consultation with him and ask him to explain it so that you can then go away and think about it. The cath he describes doesn't sound like an EP at all to me. There has been a lot of confusion about EP and ablation in POTS. Basically as I understand it it is a very bad idea to have an ablation to modify the sinus node to get rid of sinus tachycardia - trials have shown that this can get rid of the tachy but makes the POTS symptoms worse in the longterm. However ablating an abnormal conduction pathway such as one that causes PSVT is a different issue and should be discussed individually. If you find out more about the cath the doctor is considering please update us - I'd be interested to learn more, especially as I think I am highly sensitive to histamine and he mentioned some sort of histamine test. Good luck in finding the information to empower you to decide about your care, Flop

Hi Maxine, sorry to hear you having trouble with your teeth on top of everything else that you are dealing with right now. I asked my cardiologist for advice about dental work a few months back as my dentist is advising me to have impacted wisdom teeth removed. Personally as I am not getting any pain I have decided to leave them alone for the moment but it sounds like your problem does need fixing soon. His advice was that local anaesthetic (LA) is the worst type of anaesthesia for a POTS patient to have followed by epidural and the general anaesthesia (GA). Basically he told me that a GA was the best option as it would be least likely to trigger a POTS flare. I know I went into a POTS hole after the LA to insert my cardiac Reveal device last year. I don't know how dental care in the US works but in the UK you can have procedures done under GA by hospital dentists in a main hospital which would make me feel a bit safer than at the dentist's office. I would call the doctor that looks after your POTS and ask him/her about dental anaesthesia. Either way avoid the epi and stay well hydrated / have an IV. Good luck, Flop

I've never taken vicodin or similar narcotics so can't comment on them. However I had exactly the same experience as Gwendolyn when I was on prednisolone for hayfever - my POTS symptoms got much better. The POTS always plays up when my allergies are bad and the steroids help so much. The problem I had was trying to stop the prednisolone - I feel so ill when I cut the dose that I have to do it in tiny steps - it takes me about 20weeks to wean off 10mg or prednisolone. I know I can't use steroids this summer - the long term effects are too risky. In one of my other posts I ramble on about the different types of steroids and the theory why fludro helps with low blood volume. All of my doctors tell me that there is no medical reason why prednisolone should make me so much better (other than it does make people euphoric) and it seems to help control my HR and BP as well as the dizziness. I wish I more was understood about how POTS works so that I could understand more how to treat it! Anyone else found drugs for other things that also help their POTS? Flop

I definitly don't wash my hair twice in one day - as it is dry I usually get away with having it washed every 10 days. If it starts to look a bit lank I put dry shampoo spray on it and brush through. It is hard enough to persuade people to help me dry it as it is. That is the disadvantage of swimming - doing my hair and exercising on the same day. Other posts have reminded me how great the water can feel and the freedom. I will try to get to the pool some time in the next few weeks. Flop

Thanks for the suggestion about using conditioner before swimming - I guess it makes it easier to get the chlorine out and protects your hair? The gym make you shower before using the pool anyway so I guess throwing o load of conditioner on shouldn't be too much extra work. I'm lucky that this friend's gym has steam rooms, sauna and jaccuzzi which I obviously avoid but it also has a spa pool which is just about right for sitting in without getting cold, without being like a jaccuzzi. The air/water jets are so powerful that you can float on your back and get a massage at the same time. I think that it only really the spa that will persuade me that the effort is worth it. I have only been to this gym once and I didn't notice any disabled shower cubicles but I shall phone and ask them. If not maybe they could get a plastic shower chair? I'm waiting to see an occupational therapist to try to get a shower chair for my house. The hairdryer problem is unfortunately still a problem when sitting down. The effort of holding the dryer above my head and the heat is just too much for me. I will have to persuade someone else to do my hair for me (I have to get people to help when I just wash it normally or pay to go to the hairdresser's). Lets try to keep this thread going for a bit as I know I am going to need encouragement to actually make the effort to go swimming. I'm sure with a bit of support we can encourage each other? Happy swimming, Flop

I was once a competitive swimmer and got selected for our national squad when I was 14. I got bored of swimming and haven't really swum much at all in the last few years. The friend that helps care for me dragged me off to her gym to go swimming a while back. I did rather over-do things by doing 20 laps of a 25m pool (I used to do 50 laps of a 33m pool as a gentle warm-up before starting a training session!!). I was really tired for several days afterwards but really enjoyed the freedom of the water. Now that my chest infection is clearing I am planning on going again but limiting myself to 5 lengths and then sitting in the spa pool to relax. The worst part for me is having to shower and wash my hair afterwards. I have really frizzy longish hair that has to be deep conditioned then blow-dried and straightened to stop me looking like I've been electrocuted. I can't stand for long enough in the shower to wash my own hair and holding the dryer / straightners above shoulder height is impossible at the moment especially with the heat involved. I've tried swimming caps but my hair still gets soaked with chlorine. Any suggestions as I would really like to start swimming regularly again (I'll try anything that might help the POTS). Flop

Really dislike steps but beginning to hate lifts too! The lifts in my work are crazy, you can STAND for ages waiting for a lift to arrive then like busses 3 come at once. I had two odd experiences today. Got into a lift on the groundfloor whilst talking to a friend, pushed the button for the second floor. The doors shut and the lift felt like it was moving but when the doors opened and we stepped out we were still on the ground floor! The second was later on when I got in the lift on the second floor to go up to the third floor - I got taken via the ground floor and then the basement before going up to the third floor! Am I going mad or do lifts just not like me today? Flop

Hi, I want to share a secret natural remedy for nausea. I can remember being in a clinic with an Indian doctor recently and describing to him the awful nausea and dizziness that I experienced after starting paroxetine (seroxat) for my POTS. He just asked if I wanted him to give me something for the nausea and I assumed that he meant a pill. He reached into his white coat pocket and pulled out a small camera film pot. The pot was full of spices - whole cloves, cardamon pods, fennel seeds etc. I couldn't imagine trying to eat any of it. He encouraged me to try a fennel seed and just hold it in my mouth. They have a pleasent aniseed flavour and I was soon chewing it. He recommended slowly chewing/sucking on the spices and it really works! I've just remembered to post this as a friend complained of nausea and I pulled the pot out of my backpack and gave him a fennel seed. People often know about using root ginger for nausea but I had always associated Indian spices with stomach ache rather than as a remedy for nausea. If anyone tries this please let me know if it works for you. Flop

Oooh I'm so jealous! I can understand that you must both be feeling apprehensive but I'm sure that if you follow all of the above advice that you will have a great time. I know I have been talking non-stop about wheelchairs recently but I would definitly take/hire one. If you want to walk for a bit load all of the backpacks / emergency supplies onto the chair and push it. As you know waiting in line is about the hardest thing for us to do so certainly don't feel guilty for getting in the wheelchair and using the disabled enterances to rides. They are there to help you and blacking out whilst waiting in line will spoil the trip. Take advanctage - it's not often that you get perks and the kids will love being able to fit in more rides than normal families! Just listen to your body and take a rest when you need to, after all you will need to be up for the night time fireworks! Maybe one day I'll get over to the USA for a visit or even to Disney Land in Paris which is rather closer for me! Flop

Tessa, Glaucoma is an eye condition where the pressure inside the eye increases as the normal fluid in the eye can't drain away properly. It often runs in families and usually is associated with being middle-aged or older but can occur at any age. There are 2 types open angle glaucoma which usually gradually builds up and acute angle closure glaucoma that is sudden onset and very painful. It is simple to test for and in the UK anyone over the age of 40 will be tested when they have an eyetest. The simple optician's test is to use a machine that puffs a small jet of air onto your eye and calculates the pressure within the eye. Ophthalmology departments have more sophisticated tests for directly measuring the pressure with a tonometer. My grandmother has glaucoma so I ask the optician to check my pressures when I have my annual eye test. If detected early it can usually be treated with betablocker eyedrops to prevent visual problems from developing. (Can you tell that I did work experience in an optician's shop when I was 15?) Flop

Hi everyone - an update for you. I met with the occupational health doctor at work today. He has previously been very supportive of trying to keep me in work - he even strongly criticised his counterpart at my previous employer's for failing to support me or recognise my POTS as a disability. (My previous post sacked me due to ill health but they had to re-instate me when higher powers intervened). I explained my recent problems including admitting to my 2 recent blackouts (neither at work luckily). I asked him for help getting a parking space closer to the main building - I don't yet have a disabled parking permit but hopefully will soon. There are disabled spaces in the public carpark but not in the staff one and I was told that there was nothing he could do about it! Sounds like you aren't supposed to work if you're disabled! I also very cautioulsy introduced the possibility of me using a wheelchair at work. Initially he thought it was an over the top idea. He then said that if I was struggling so much that perhaps I was too ill to work - why doesn't anyone understand that I have insurance that would pay me a nice income to sit at home and do nothing but I actually want to work and in my career taking time off at the moment isn't an option. If I get therough the next 2 years in one piece I can then work for myself / freelance / part-time or whatever I want but I am not senior enough to have that luxury yet. He did conceede that work couldn't refuse to let me use a chair (the UK law says they can't discriminate against me for using one). He also said that if I do need one then I can get government funding through the access to work scheme to buy one. But he advised me to think very carefully before going down the wheelchair route. Arrrrghh - now I really don't know what to think. Flop

After seeing so many EDS diagnoses on here I went searching for EDS information. I am now wondering if I have EDS too (though not sure which type) - I daredn't mention it to my doc though, he already thinks that I am a total hypochondriac! Flop

Hi Becky, I can't stop laughing at the thought of you answering serious interview questions with your legs in the air. Did they advertise for a contortionist? I guess that so long as you aren't working on a customer desk it shouldn't matter if you have to do your work upside down or back to front - so long as you have the experience and can produce what they want who cares if you have to lie on the floor to achieve it? Good luck with the other interviews - I hope that the most suitable job is soon winging its way to you. Flop

Dionna - I wish I could even dream of lifting weights! I struggle to carry more than half a bag of groceries from the car to the front door. Carrying things seems to really exacerbate my POTS symptoms - I can loose my vision after only about 10 paces when carrying things. Tearose - I think that I deserve a wheelchair and it would be very helpful, I just don't think that my doctors or employer would approve. Work may say that it would be a dangerous environment to have me use a chair in - I don't want to become a health and safety hazard to other people. However if I have a blackout at work I would really be a hazard. Last time that I was actually blacking out at work I got sacked so I am very conscious of playing the game right with my employer and saying the right things - I could be building a rod for my own back by investigating this option. Argh decisions, decisions! Flop

I've had a look at some wheelchair catalogues - I had no idea that there were so many different types available! The first time a wheelchair was suggested was by my GP (PCP) but I think he might have been joking. I think that my cardiologist would be very much against the idea as he is convinced that deconditioning is the root of all evil and that I must exercise as much as possible. Mind you he has just said that I should qualify for a disabled parking permit. I'm having an appointment with the occupational health doctor at work tomorrow to discuss my recent health problems - I'll have to try to introduce the subject gently to gauge his initial response! If occupational health think it is a good idea I'll have to try to convince my GP and consultant that it is a means to an end (ie me trying to keep my job / secure a new job) not me being lazy or allowing my body to fall apart. I wouldn't want to buy a chair without their permission. Maybe I should just stick with the Midodrine for a bit and see what happens? Flop

I'd be interested to hear of any EDS / POTS research going on. I have often wondered if POTS might be related to a conective tissue problem preventing constriction of the blood vessels. Particularly given how many people on here seem to have been diagnosed with POTS and a discussion about "road maps" of veins accross out bodies on another thread recently! Flop

Hi Danelle, I'm sorry to hear that you have found out that you've got to deal with breast cancer on top of your POTS. From the tratment plan you've mentioned it sounds like your docs are confident that they can wipe this thing out. I don't know if you are a Kylie fan but look at how well she is doing now - back on tour performing! Well I don't know if you can sing or not and the POTS might confound the long dance routines but you have to aim somewhere! I don't know much about chemo but I know that sickness / vomiting can be a problem for some people. I would ask for Ondansetron IV - it is one of the best anti-sickness meds available and often given to prevent post chemo nausea. Also as avoiding dehydration is essential I would ask them to load you with IV fluids before during and after each chemo session - that should give you the best bounce-back potential. Best wishes as you enter this journey - we will all be with you every step of the way. Flop

Tearose - please don't feel offended, honestly I'm greatful for any advice and encouragement. I'm better at talking about things than actually doing them. Becky - sorry to hear that you've had an infection and flare too. If only we could keep from getting infections? I seem to catch everything going arround from colds and stomach bugs to my latest pneumonia. It usually results in people saying "there's always something wrong with you" which usually seems to mean that they think I am a hypochondriac! Dionna - thank you for being jealous - it reminds me how lucky I am compared with others on this site. I guess that I have just been so fortunate to have such a long time of being relatively well. I am currently no where near as ill as I was a few years ago but am having a harder time dealing with this psychologically second time arround. I had got used to my limitations and could modify things (or get other people to do things for me like cooking and laundry) to enable me to continue working. My GP (PCP) has always said that there are hurdles placed in front of me and I climb over them, then that the hurdles get higher and higher and I keep on climbing over them. Perhaps I have reached the point where the obstacles are just too high to climb/drag myself over? Flop

Thank you tearose, I'm not sure if I should be nervous of you now - I guess you are too far away to do any lasting damage to me? (tongue in cheek!) I've started a separate thread about wheelchairs as my poor fogged up brain doesn't cope too well with thinking about more than one thing at once. I've now been on the midodrine for 2 days and can honestly say that I haven't noticed any benefits or side-effects either. I took a double dose this afternoon (5mg - naughty I know, just wanted to see what would happen) and still can't tell any difference. I'll go and measure my BP in a minute to see if the numbers have changed at all. I'll keep you all updated if there is any news. Keep standing (or trying to), Flop

Hi, I'm trying to find out about the advantages and disadvantages of using a wheelchair to combat POTS. I am not thinking of using one all of the time just when I'm at work - I can't think/make decisions properly whilst standing up due to lack of perfusion to my brain. I have had blackouts at home but not yet at work. To have a blackout at work would cost me my job. Even without blackouts I think that my career is on the line as I have to compete for a new job to start in the summer (I am coming to the end of a 2 year contract). There is a bit more info on what has been going on with me in the thread "Blackout! Feeling rough " (I don't want this to become a duplicate thread). What I am after is advice from those who use or have used a wheelchair, or anyone who has been told not to use one. Thanks, Flop

I've been having weird sweats recently too. They seemed to start when I got the nasty chest infection that I've been fighting recently. At night I have a duvet and another lighter cover near me to pull over myself when I get cold - seem to get quite shivery but no goose-bumps. Other times I have drenching sweats and will have thrown the covers off and switched on my fan and have yuckky wet nightclothes. I can go from one to the other during the night - it really messes with my sleep. I can get similar hot and cold phases at work too. I always used to complain that work was boiling and have to wear short sleeved lightweight tops even in the winter. The last few days I have been too cold in long sleeved jersey tops and wished that I owned a cardigan! I think we all need personalised atmospheric generators, lol Flop