flop

Speed of onset of florinef - it took several weeks for me to notice any benefit from starting florinef. I started on only 0.5mcg (half a 1mcg tablet) and my cardio slowly increased the dose by half a tablet every few weeks. I got up to the maximum dose of 3mcg and have stayed on that dose. I found that it changed me from blacking out without any kind of warning, through having a few seconds warning to being able to sit down and prevent a full blackout most of the time. Don't worry if you don't notice any benefit initially. You will probably need to get your doc to fiddle about until you find the right dose for you. Keep standing, Flop

Sunfish, you won't know me as I am new to posting on here but I had lurked for a long time. Your many posts have been very valuable to me in learning about the various conditions that you have and share with so many members here. I realise that your situation is probably a unique combination resulting in the daily survival struggle that you face. What has impressed me the most is the way that you are facing this struggle and still give so much to the rest of us through the message boards. Your courage and determination must be colossal. That said, everyone, no matter how strong needs support (which you have on here by the bucket-load) and also somewhere to share and explore their feelings, emotions and fears. Whether you chose to do that: in person with close family and friends; via private e-mail to members well known to yourself; or on these message boards is entirely your decision but please feel free to discuss anything you would like to. We all enjoy hearing of your important successes (such as that fantastic shower) and want to return some of your positive energy and support in any way we can. I am so glad that you are back in your own fishbowl and out of the hospital tank! Best wishes, Flop x

Hi, I've had similar trouble coming off prednisolone but am fine with fludrocortisone (florinef). I've got asthma and have previously taken prednisolone 40mg daily for 1-2 weeks for asthma flares and then stopped it without any problems. I also have really bad hayfever / allergic rhinitis. I realised that when my allergies were bad my POTS symptoms were also bad. I got so itchy that antihistamines etc didn't really help and in desparation my GP prescribed prednisolone for my hayfever 10mg daily. As soon as I started the prednisolone I felt much better and my POTS symptoms dramatically improved. My GP and cardiologist didn't believe that I had improved as I was already taking fludrocortisone. My cardio pointed out that fludrocortisone is a strong mineralocorticoid but a very weak glucocorticoid steroid. Prednisolone is a weak mineralocorticoid but a strong glucocorticoid. It it the mineralocorticoid bit that makes you retain fluid and helps with the POTS. The glucocorticoid bit is the anti-inflammatory bit that helps with asthma / allergies. It is also the glucocorticoid bit that causes the cushing's symptoms. He said that as I was already getting a lot of mineralocorticoid activity from the fludrocortisone that the prednisolone shouldn't be adding anything to my POTS symptom control, just helping the allergies. The problem I had was trying to come off the prednisolone. My body reacted quite badly when I reduced the dose and I would feel really POTSy for several days each time I cut the dose. In the end I reduced my daily dose by 0.5mg every 1-2 weeks. It took about 25 weeks to get off the pred. The next summer I did the same. I have realised that I simply can't go on using pred for allergies as I will wreck my body, especially my bones. I have recently had my first bad asthma flare in years and refused to go on pred as I knew how much stopping it messes up my POTS. I've managed to settle my chest with nebulisers and inhaled steriods etc but don't have a clue how I'll get through this years hayfever - I take antihistamines all year round as it is! Golly, I really didn't mean to waffle that much or go all technical. Although the florinef leaflet warns about all the sameside-effects as prednisolone I was assured by my cardiologist and pharmacist that they are very rare with fludrocortisone (but common with prednisolone). What can happen with both types of steroid (but much more with prednisolone) is called adrenal suppression - your body gets used to having artificial steroids so it doesn't produce as much of its own natural steroids. This is why coming off steroids can be so difficult - your body has to learn to produce more natural steroid itself. This is especially important if you become suddenly ill or are involved in an accident. In most people their body would release extra surges of steroids in response to the stress - if you have adrenal suppression from steroid tablets your body can't do that so you need the drs to give you high dose steroids to stop your BP from going way too low. It is really IMPORTANT to carry a steroid warning card or wear a medical necklace/bracelet to alerd medics that you are taking long-term steroids. Don't worry too much about the fludrocortisone - it shouldn't give you cushings side-effects. I hope it helps with your POTS. flop

Katherine, I'd be interested to know where you read about the betablocker-thyroid med interaction. I had checked out the BNF (British National Formulary - the book that UK Drs use for drug information) and there was no mention of an interaction there. As I said earlier, get your PCP to regularly check your bloods and if needed they can adjust your dose of thyroid suplement. flop

Thanks Roselover, you put that so well about escaping from a cocoon! POTS is so all encompassing that it is easy to forget about the real world out there. I'm really greatful that I got the chance to escape for a few minutes. I'll have to google for the rollercoaster website - it sounds like good fun, adrenaline from your armchair! Keep standing, flop

Hi I just had to post to share the fab time I had this afternoon. Not too far from where I live there is a national level racing track. I love cars and sometimes go to watch the British Touring Cars or classic car racing there. You can pay (an awful lot of money) to drive round the track on special track days and I have always fancied having a go. A friend is a paramedic and often works in the medical centre at the track. He found out that Volkswagen were holding a special customer day to let people who have just bought cars have a drive in a VW on the track. He talked to the boss and managed to persuade them to let me have a go for free as a special treat. I drove (not very quickly) round the track myself (didn't want to smash up a brand new VW) and then the best bit was having a couple of laps as a passenger with a pro racing driver really pushing the car hard - the adrenaline rush was amazing! They also have a polished tarmac rally track and I got an instruction session on that too. I felt much safer there with an instructor telling me exactly what to do (break hard and into 1st gear, quick off the clutch now put your foot down!). The car slid about all over the track, going round corners sideways (intentionally) - such fun! I am so greatful to my friend for getting his boss to let me have this wonderful treat for free. I loved every minute of it. I'm back at work tomorrow after nearly a month off sick and was really dreading it - now at least I can think about the excitement to help me through the day! flop

Lavender, beta blockers can help with the symptoms of hyperthyroidism particularly the tachycardia and any tremors but they won't actually change your thyroid hormone levels. If you are on meds for hyopthyroidism (probably levothyroxine?) the betablockers shouldn't cause any interaction. Make sure you get your dr to check your bloods regularly and alter the dose as needed but don't worry about it. flop

Hi Rachel, I'm so sorry to hear about the problems you are having with this doctor's office. I wonder if the administrator has just thought that the other POTS patients are quite sick and need a lot of appointments and thought that adding another one to the doctors list would be a hassle? It should definately be the doctor's decision whether he / she can help you or not. Get your husband to insist that the dr (not a receptionist or administrator) decides if they can help you or not (they can only really judge that after giving you an appointment to find out what your troubles are). If this dr is good with POTS patients it will be worth the effort of fighting for an appointment. Good luck, flop

Hi Emily, the POTS help part of the pill is due to the hormones. Many normal women (i.e. those that don't have POTS) get fluid retention with swollen ankles, waistbands too tight etc just before a period. In fact some women use diuretics (water pills) to get rid of the extra fluid at that time of the month. I don't know what exactly about oestrogen and progestrogen causes the fluid retention but it can be a useful side-effect of the pill. Florinef works with some of the hormones that affect the kidneys. It makes the kidneys reabsorb sodium from the "urine" and that pulls water back from the "urine" into the bloodstream. Two different types of hormones that both end up causing useful water retention. I hope that lot makes sense, flop Sorry I took so long typing my reply that there were three other posts in the meantime with much clearer info than mine. I haven't had time to do any research just typing what I can remember. Stay standing, flop

Hi Rita, I've got a Tanita scale too. I live in the UK and bought mine at Boots the Chemist (a large pharmacy / beauty shop). My body water percentage is usually about 48%. My cardio wants it to be 55 - 60% but I can't get it that high even with fluids, salt and florinef. For those without fancy scales the colour of your urine is a good way to tell how hydrated you are. If you are getting dehydrated your urine will get darker in colour and may smell strong (it should be pale yellow and clear). Also look at your tongue in the mirror - it should be moist. If anyone else has these type of scales what sort of readings do you get? flop

Hi Elegiamore, sorry to hear you're having such a tough time. Compression hose shouldn't cause muscle atrophy. All they do is compress the veins and push the blood back up your legs to stop it pooling in your lower legs. What has probably caused your quadricepts weakness is the reduced amount of exercise us POTS sufferers generally do. Simple things like taking the lift instead of the stairs (not out of choice but need) and walking less distance will gradually cause your quads to atrophy. Even just a week or two laid-up ill can cause a big drop in your muscle mass. I wear below knee stockings (don't think I could tolerate the full ones) and I am developing quads weakness after a bad chest infection and POTS flare. Is there any way you could manage one physio appointment? They should be able to give you a load of simple exercises to do at home. Here in the UK on the NHS you usually only qualify for 2 or 3 physio appointments so they give you exercises to do at home and then review your progress. A good quads exercise to start with is straight leg raising. Sit or lie on your bed with your legs out straight in front of you. (Don't worry if knee pain stops you from getting your knee fully extended). Lift your leg so that your heel is about 5cm off the bed. If you can, hold it elevated for 5 seconds then relax. If you put your hand on your thigh you should feel your quads contract as you lift your leg. Try to do ten lifts with each leg a couple of times a day - it will make you ache so start slowly and build up. I don't know if you can manage going to a swimming pool but swimming / kicking your legs holding on to a float board is really good for building leg muscles without stressing joints. Also because you are horizontal I get much fewer POTS symptoms than when I walk. Don't worry about the compression hose - if they help the POTS keep on wearing them. You may find that they compress your patella (knee cap) which can cause pain but they won't atrophy your muscles. good luck, flop

re BC pill and antibiotics - a lot of antibiotics interfere with the oral contraceptive pill because they alter the bacteria in your gut and affect how you absorb the pill from your gut. (In the same way a lot of antibiotics give you diarrhoea - everything goes through you faster so you don't absorb things as well as usual). As you are absorbing less of the pill you get less of the hormones in it - in some people this causes breakthrough bleeding. Drs should always warn you to use alternative contraception if you are sexually active. Being on antibiotics does reduce the efficacy of the pill but you are probably still absorbing enough of the hormones to benefit from their fluid retaining side-effects. Glad to hear that you've found something that is helping your symptoms. Take care and keep standing, flop

Hi Liz, I echo what others have said about POTS symptoms being very variable. About 2001 after a nasty viral infection (my flatmates had the same illness and one was diagnosed with CFS/ME) I noticed that I was often tachy 120-140 whilst standing up and was told the usual "you're anxious". 2004 I caught another viral illness and fainted at work. Was told the faint was just because I had a high temperature and not to worry about it. Unfortunately I carried on fainting anything up to 5 times per day. A few months later my cardio diagnosed POTS on TTT and I was started on Florinef then added in Bisoprolol. Since adding the beta-blocker I haven't had a full faint / blackout. I have good patches where I can go for several months forgetting that I have POTS as long as I take my meds. Other times I get symptoms and need to sit down but can cope and somehow struggle on with full-time work. The worst times are if I have an intercurrent illness. I have just had a severe chest infection and have had to have 3 weeks off sick. During these bad patches I feel awful (and seek out sites like this) but am greatful that I'm not like this the whole time. Be greatful that at the moment your POTS isn't causing too many problems. There is no evidence that POTS progresses / gets worse just that the symptoms can vary in severity. My cardio told me that particularly with POTS following a viral infection that there is a good chance that it will spontaneously resolve after 3 to 5 years. Best wishes and keep standing! flop x