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Congratulations Rita! having an "invisible illness" can be so frustrating. I get really embarrassed using disabled parking spaces even though I have a disabled blue badge. I feel less self conscious if I have my walking stick-seat with me as it makes people think that maybe I am disabled. We need to keep raising the awareness of illnesses like POTS that affect seamingly healthy (and often young) people. Flop

Sophia, I often take so long to compose my posts that I end up "cross posting" with others essentially saying similar things. Sunfish and I managed about 6 crossed posts in a row a while back. I gues you probably started typing then went searching for the link? Flop

Lauren, I certainly get excessively fatigued after exercising. At the moment the limit of my exercise is a few laps of the swimming pool. I used to swim competitively and thought nothing of doing a "gentle" 200 lap session. When I went for the first time recently I swam 20 laps and as a result ended up in bed / flat out on the sofa for 4 days! Now I limit myself to 6-8 laps and am hoping to gradually build this up. I'm not well enough to consider trying weight training but my cardiologist did advise me not to do weights and to avoid carrying things like even grocery bags as it can crash my BP. I think that there are some type of static exercises that are supposed to be beneficial in POTS, doing a search of the forum for "exercise" will porbably bring up quite a few threads for you to read. Hope the aching goes away soon, Flop

Hi Anna, I looked up Cinnarizine - it is an antihistamine but only used for the treatment of nausea. I can't see any way that it would "cancel out" Cetirizine but perhaps the pharmacist meant that there would be no additional benefit of taking the two together? Pharmacists here in the UK seem to be insistant that you can only take one type of antihistamine. In fact one told me off yesterday for taking Ranitidine with Acrivastine. I'm having to buy the ranitidine over the counter telling the pharmacist that I need it for indigestion, then an taking double the recommended dose. When it is prescribed by doctors the dose is 150mg twice daily (which I'm taking) but when you buy it you are only supposed to take 75mg as needed, maximum 2 tablets daily. It is working out at ?1 a day! Flop

Hi Sue, midodrine is well known for it's tendancy to cause goosebumps, so as others have said that is probably the culprit. Rather than buying new bras, have you thought about trying nipple shields / pads, the sort designed for expectant / breastfeeding mums? They might give you a smoother outline without having to put adhesive on your skin. Oh, and don't be embarrassed about asking this sort of question - this is when the forum is really useful for getting tips from others with the same issues without having to ask a doctor about minor but troublesome problems. Flop

Hi India, is it a triamcinolone cream that you have been prescribed? You are quite right that both Florinef and Triamcinolone are steroids, but they are different types of steroids. Florinef has mostly mineralocorticoid effects that cause reabsorption of soduim and water in the kidneys to boost blood volume and blood pressure. Triamcinolone has glucocorticoid effects that supress inflammation. A pharmacist will be able to advise you on your individual medications but if it is the cream it shouldn't cause any problems if only used for a short period of time (days to weeks, not months). Hope the rash clears soon, Flop

Hi Anjuu, sorry to hear that your symptoms have flared up, it is always disappointing to have a good spell healthwise then get symptoms again. Maybe it was the long spell of work with that particular client but I think as you said yourself that a trip to the doctor is due. I'd go and get everything checked out and follow their advice, hopefully it will all settle down again. I'm also concerned about you driving whilst having such symptoms - if it happens again please pull over, just to protect yourself and other road users. I don't wan't to preach but I'd hate for you to get injured. Hope you're feeling back to normal soon and let us know how you get on, Flop

Hi Sara, my cardiologist started me on Paroxetine (UK = Seroxat, US = Paxil). He chose that one as he had seen study using this particular SSRI in orthostatic hypotension. I know that there has been bad press surrounding paroxetine but peronally I seem to be doing well on it. Just a word of warning to anyone who is prescribed paroxetine - I had quite a reaction to the first dose so I would recommend discussing with your doctor about starting on a smaller dose and building up to minimize the initial side effects, now I've been on it for a while there are no noticable side effects. How soon can you see your doctor Tammy to try to get something worked out? Flop

Hi Angela, I'm so glad to hear of your initial success with the Baclofen. I guess baclofen has to be looked upon like the SSRIs - we don't know how they work for POTS but if they make us feel better then we hapily take them. Let us know how things go on, hopefully this will mean that you can put the gastric pacer on the back burner for the moment. Flop

Hi Lauren, obviously as with any new symptom only seeing your doctor will get you a full exam and hopefully an answer or reasurance. From what you've said about the muscle pain being worse when you exercise a new group of muscles or go back to the gym after missing sessions it sounds like it may be muscle strain. When you over exert a muscle group you can cause micro-tears to the fibers of the muscle, this can be really painful and take weeks to settle back down - not just like having an excess of lactic acid in your body after a hard work out that can cause you to be stiff for a couple of days. Personally I was advised by my cardiologist to avoid all weights work, especially as lifting can cause your BP to drop. I guess that if you have missed a session the best thing to try may be to reduce the amount of weight that you are using and also decrease the number of reps that you do then gradually build back up to your previous levels. If that doesn't prevent the problem then back to my above statement of get it checked out. Flop

I'm in a similar position too. My local cardiologist was really good in suspecting POTS from my history and doing the tilt test to confirm. He has tried lots of different meds but we haven't got things under control yet. He can't understand why I am not "sorted" on Midodrine and doesn't seem to accept that there are symptoms like fatigue, brain fog etc only that there is a tachy and low BP. He also has never heard of Dr Grubb or Dr Low - not sure how you could read much about POTS without reading their articles. Anyway he has admitted that he doesn't know what to do for me now and on my request has referred me to Prof Mathias in London. I have no idea how long I will have to wait for an appointment or if he will be able to help but I hope he can. Good luck to anyone else waiting for super-specialist appointments, lets keep our fingers crossed for some answers! Flop

I think Steve's goat wins the prize for cutest animal! I hope the flock get your grass and weeds under control soon. Flop

Hi Nina, good to hear that you are back home, peace and quiet without machines to beep at you! Just enjoy pleanty of time curled up asleep and let your body heal itself. Best wishes, Flop

My cardiologist has previously suggested that whenI had holters etc on that I SHOULD try to precipitate my symptoms. This is in my pre-POTS days but he used to encourage me to go to the gym and do proper cardiac workouts and stand up for as long as possible - even in those days I had a sinus tachy of 120/min when standing upright and a resting HR of 50 (probably did have POTS but with only mild symptoms then). Hope you manage to catch something worth recording over the next few weeks. Flop

Hi Angela, I wonder whether your palpitations could be triggered by the bradycardia you describe on lying down rather than the POTS flare? Flop

Hi Julie, I only started the Ranitidine yesterday so I think I need to give it a while to see how I get on with it. No side-effects so far so that is at least one positive. It has also been pouring with rain here which always lowers the airborne pollen count which helps a bit. Still got really itchy palate and throat, slightly swollen so it feels like having a chronic sore throat when I swallow. I almost wish that I could squirt my nasal cromoglycate into my mouth. In the past I have tried taking my steroid asthma inhaler without using a spacer to deliberately increase the amount of steroid landing in my mouth - no help, I think it gets swallowed before it has a chance to have any effect. Flop

I'm not a fan of raw garlic - my mum makes a hot lemon/honey/garlic/ginger drink to soothe colds etc but the raw garlic version tastes awful. On the other hand a couple of slices of warm garlic bread with pizza / pasta is really nice - I just try to make sure that everyone eats some so we smell the same the next day! I've never noticed any specific POTS symptoms related to eating garlic - maybe you have to go overboard or take strong garlic supplements to trigger vasodilatation? Flop

I don't know if tis is correct but my theory would be that when our BP is really low there is reduced blood supply to the brain. That would also mean reduced oxygen to the brain. For the brain to work it needs an adequate supply of both glucose and oxygen (remember the Kreb's cycle and electron transport chain from Biology). When the brain doesn't get it's glucose and oxygen it can't create energy to carry out it's work properly. If the supplies are severely reduced you can blackout or have a seizure (think fainting [oxygen] or diabetic hypoglycaemic coma [glucose]). I figure that when the supplies aren't quite low enough to cause a collapse they cause either "brain fog" or the disorientation and aggressive responses that have been described earlier in the thread. Anyone have any other ideas / theories? Flop

Hi Lois, thanks for explaining the two different tests. I personally haven't had any ANS testing other than Tilt tests although I am hoping to get some done in the future. I think it was Mary that had the powder sweat test. Flop

Hi Angela, I had my EP study back in Feb 2004 (no arrhythmias induced despite isoprenaline provocation). It was done because I was complaining of regular episodes of palpitations. 7 day holter had not caught any episodes, echo showed borderline thickened IV septal diameter, we have a family history of HOCM with sudden cardiac death and I have late potentials on my signal averaged ECG. Really they were looking for inducible VT. All this lot happened before the viral infection in Nov 2004 that started off my recurrent syncope. So my tilt and POTS diagnosis was after the EP. Flop

Nina, all the best to you for tomorrow and wishing you a speedy recovery after your op. I'll also be thinking of Teri and your step-dad. flop

My SVT has also diminished on my tiny dose of beta-blocker (Bisoprolol 1.25mg bd). Prior to the beta I would get palpitations maybe every 6-8 weeks but often several episodes on that day. Since going on the beta I tend to only get episodes every 6 months. Flop

Jennifer, I'd follow the hospitals advice on the bowel prep liquid. Some of them you can stop drinking once you are having totally clear liquid movements. Otherwise it is better to drink all of the stuff to reduce the chance of them not getting a good look and wanting to bring you back for a repeat test due to "inadequate prep". Flop

Thanks Nina, it sounds like I need to invest in a jacket and at least one set of spare cool packs and a bigger cool-bag to keep them in. I already have loads of the blue gel cool things for the bag as I tend to wrap them in a small towel and use them to cool myself down at home. I've also found that standing a couple of frozen gel cool packs in front of a fan really cools down the air that is blown towards you - a great half-way house between a fan and proper AC. Flop

Hi endoscopy units sometimes recommend a "low residue" diet before colonoscopy. It would include things like fish, chicken, white bread and white rice. Whilst normally high fibre foods help to keep you regular they take longer to digest so actually pass more slowly through the digestive tract. Try googling for "low residue diet / foods" and see if that gives you any more ideas. As someone else has already said they will give you a powerful laxative and if they want you to follow a specific diet they should have sent you a leaflet explaining. I think that a lot of departments now rely on the laxative and aren't so concerned about diet. Hope that makes sense, Flop