flop

My post below is probably not very relevant now. I originally wrote it within a couple of minutes of my first reply but then had hiddeous problems trying to post - repeatedly logged out of the site / couldn't log in. I copied it and e-mailed it to myself so I'm adding it now in case there is anything useful in it. Sorry don't hve the energy right now to edit it in view of the info posted since it was written. (Is that lot gobbledegook? Doesn't make much sense to me either LOL) Flop >Ignore the above post - I've found SAMe. It's active ingredient is S-adenosyl-L-methionine. > >From what I've read it has been studies more that other natural antidepressants such as St John's Wort and has been shown to be >effective for depression. It has been compared to the old-fashioned tricyclic antidepressants (avoid in POTS as they cause >Tachycardia) but there aren't yet any studies comparing it to modern antidepressants. > >Have you talked to your doctor about how you're feeling? I know from personal experience that chronic pain can cause depression >which they changes your perception of the pain so that it seems worse which makes you more depressed ..... and it is a vicious >spiral of worsening mood and pain. > >My cardiologist has put me on Paroxetine (a modern SSRI antidepressant). He wanted me to start it ages ago but I refused as I was >worried about the stigma associated with depression (had previously had depression as a student). When my POTS started to go >crazy again in the autumn I agreed to try Paroxetine (was also feeling a bit depressed and thought it might at least help with that if >not the POTS). > >There is medical evidence showing that paroxetine is beneficial to patients with POTS (for the POTS itself not for depression). In my >opinion it would be safer to take a prescribed medication rather than a natural supplement as the data for drug interactions is >available. > >I would make an appointment with your doctor to discuss your symptoms and possible treatments an follow their advice. If you do >decide to try paroxetine, one piece of advice - take only half or quater of a 20mg tablet to start with. I took 20mg right off and it >made me feel really odd, like I was drunk. I took a baby dose for 2 weeks then built up the dose and haven't had any problems now >that my system is used to it. > >Good luck, >Flop

Hi Bronwyn, I have POTS and have awful trouble with allergic rhinitis and lesser trouble with asthma. I discovered that my POTS virtually disappears when I take prednisolone to suppress my rhinitis. I am starting to wonder what the link between POTS and allergy / histamine release is. I wonder if a mast cell stabiliser would help me or if I have some sort of weird autoimmune condition. My POTS started following a viral infection which if I've understood correctly may tie in with an autoimmune problem? Anyway, welcome to this wonderful forum. I haven't been posting on here for very long but am already adicted to the site. I have asked several questions and shared my current problems and have had a fantastic response from everyone - either information or support or both. You're certainly not alone any more. Flop

I've not heard of sam-e, is it a brand name? Do you know what the active ingredient in it is? You need to be careful with supplements as they aren't all FDA approved so side-effects and interactions aren't always known. If you can find an alternative name for it I'll try looking it up for you. Flop

Hi Sarah, welcome to the forum. Most of us have POTS but there are a whole variety of other cardiac diagnoses here too. You sound like you have quite a combination of cardiac problems and I'd echo that you need to be seen ASAP. Sometimes just phoning repeatedly can get you an appointment sooner. Do you live with your parents / someone else who could go to the office and pester on your behelf and explain how ill you are. The doctor that prescribed the propranolol, did they know that you were already on atenolol? Did they want you to stop the atenolol? Please don't take both together as they are both beta-blockers and you could end up in problems from a really slow heart rate. ((((HUGS)))) Flop

Hi Amy, sorry to hear that you had to have your PICC removed. It's good news though that they were able to place another one right away and that they also have a plan of what to do if there are further PICC problems. Good to know that your docs are taking good care of you and sorting out the problems. Sounds like the first PICC might have got infected, are you keeping a check on your temperature? If not it might be worth checking it a couple of times a day so you can alert you doc if it goes up. Hope the sore arm settles down quickly, it must be a pain having both arms hampered by dressings! Take care, Flop

Hi, I am somehow dragging myself through full time work at the moment (hours cut from 56 to 44 for me last month after a month off sick). I do find work exhausting but it is also an improtant part of my life. I was such a career driven teenager and worked so hard to get where I am now that I couldn't cope psychologically with having to give up work. When at work I make sure that I always have a bottle of cold water with me to sip - means I have to go to the loo a lot which my colleagues find odd but it seems to help. I try to avoid standing. If we are standing in a group I am always the one that goes to fetch something or go to the computer to look up info - and excuse to keep moving or sit down. If forced to stand still I wriggle a lot - pumping my calf muscles and squeezing my arms and chest muscles, it seems to help for a minute or two. When I get desparate I just sit on the floor - my colleagues have had to get used to me suddenly sitting at their feet! I am also really careful about meals. Never skip a meal but eat small amounts more often. A large meal drops my BP and makes me tired so I snack more, toast is really good. I do get really tired though. The last 2 weeks running I have got home on Friday and gone to lie down at 7pm before dinner and slept soundly till 2pm on saturday! I keep a big bottle of water by the bed and seem to manage going to the bathroom without really waking up properly. Not sure what I'll do this weekend as I am working till 10pm on Friday and then 9-5pm on Saturday and Sunday. Flop

I've heard the "beating on empty chambers" theory for POTS chest pain on here a few times but never from a doctor (doesn't mean it's wrong though). I got admitted to hospital the other summer with severe chest pain - here is how my cardiologist explained his theory to me. When the heart contracts (systole) it pushes blood up and out of the ventricles. In between contractions (diastole) the heart relaxes and blood rushes in to the ventricles ready to be pushed out during the next beat. When the heart rate speeds up the relaxation time between contractions gets shorter so there is less time for the ventricles to fill up properly. This means that less blood gets pushed out of the heart on the next and subsequent beats. The interesting thing is that the coronary arteries that supply oxygenated blood to the actual heart muscle take blood from the aorta but during diastole not systole. If diastole gets shorter (due to increased hear rate) there is less time for blood to flow through the coronary arteries to the heart muscle. Also during a fast heart rate the heart muscle is working harder meaning it needs more blood (carrying oxygen) than normal not less. Ultimately less oxygenated blood getting to the heart muscle when it needs it leads to chest pain. The pain feels the same as angina pain as the cause is decreased oxygen supply to the heart muscle. But in POTS it is actually caused by the tachycardia not narrowings of the coronary arteries. As somone has already said GTN spray works by relaxing blood vessels (vasodilatation). In coronary artery narrowing it allows more blood to flow down the coronary arteries and gets rid of the pain but with the side effect of lowering BP. In POTS the vasodilating effect means that all of the bloodvessels widen causing decreased BP and even faster heart rates to try to compensate. So GTN actually makes the chest pain in POTS worse! Since going on a beta-blocker to control my heart rate I haven't had any really troublesome chest pain at all. That lot is just my cardiologist theory, but physiologically it makes sense. Hope it helps. Flop

((((((((((HUGS)))))))))) Just to let you know that I'm thinking about you as you wait for more news. All the best, Flop

Hi, I can understand why your doctors want to lower your cholesterol if it is genetically raised but there are different sorts of tablets that you can take. From the symptoms that you describe I am worried about the muscle aches / pains and weakness. One of the main problematic side-effects of statins is rhabdomyolysis (?spelling). This is muscle breakdown caused by the statin and causes aches, pains and muscle weakness. The excess protein breakdown can lead to kidney problems. As statins work slowly over a long period of time it won't do you any harm to stop it for a while. If I was you I'd stop taking the statin and see your PCP urgently to get blood drawn for CK (muscle breakdown measure) and kidney function. Hopefully the tests will come back normal and then you and your doc can decide what treatment to use for your cholesterol. Hope you're feeling better soon, Flop

Hi, I seem to be getting good at this blackout business again :-( I hit a toilet bowl with my head yesterday and managed to break the toilet but not my head - not sure how I achieved that but I sure do have a headache now. Has anyone else gone through this - 2 years of no blackouts (varying symptoms and 5 months of feeling normal) to suddenly having them return? As my POTS seems to be post-viral I had been hoping that it was resolving but now feeling despondant again. If I could just get rid of the blackouts I could probably cope with the dizziness and feeling crappy. My cardiologist did allow me to increase my midodrine to 5mg in the morning, 2.5mg afternoon and 2.5mg bedtime. He said the max dose he has ever needed to use for POTS was 5mg, 2.5mg, 5mg and he gets worried about such high doses. What doses and timings are other people using miodrine following? Flop

It is the epinephirine that is often pre-mixed in LA that causes the worst problems. Just make sure that your dentist uses LA without epi and stay well hydrated and salt loaded.

Thanks for the support, I can get funding for a chair with my PCP's backing which I had (a wheelchair was his idea in the first place). Unfortunately now that my cardio has vetoed a chair my PCP is agreeing with my cardiologist. My PCP says that my cardio has always been right before so maybe he's right about deconditioning and that I need to find the evidence to convince my cardio that a chair won't be harmful. I would find it very hard to find another cardiologist and almost impossible to find another PCP. They have always been so good and understanding before that I don't want to destroy all those years of trust (my PCP has looked after me since I was a baby except for while I was away at university). Flop (with a sore head - no lump though!)

Thank you for the advice and support so far, I got really angry and upset with my cardiologist. It it a good thing I was talking to him on the phone - I know he would tell from my voice that I was upset, but at least he couldn't see the tears of frustration and dismay pouring down my cheeks. I spent the next hour (hiding at work) crying inconsolably as my world fell apart arround me. [ I realised later last night whilst still at work how bad crying is for POTS (- dehydration?). Whilst washing my hands in the bathroom BANG down I went again. This time I fell backwards into an empty cubicle and hit my head on the toilet so hard that I split the ceramic bowl right the way through - how I didn't break my head instead of the toilet I'll never know! ] I just don't see how I am supposed to cope much longer at work without a chair - I either need to change my ability to work or stop working. I even explained to him that occupational health have said that without a chair I can't continue working (that was a slight exaggeration) and that if I don't manage to work through the next 18 months that my career is over. His reply to that was that if I use a wheelchair my life will be over - I will become permanently disabled and eventually bed-bound through deconditioning. Initially I thought that I needed to find myself a new cardiologist (not easy when my current doc is the only one around here who actually acknowledges that POTS exists!). I managed to have a phone conversation with my GP (PCP) later yesterday evening. He seemed supprised at my cardiologists reaction but pointed out that my cardiologist has always fought really hard on my behalf before, particularly to keep me working and to help convince other doctors that I have a genuine medical condition and that I don't have a major psychiatric problem. My GP thought that as my cardiologist has always acted in my best interests before that he must believe that the wheelchair really will harm me to react so strongly about it. After all he has backed me for getting a disabled parking permit and argued that I should be covered under the disability discrimination act. My GP's advice was to go hunting for the evidence of wheelchairs being either beneficial, detrimental or indifferent to long-term prognosis in POTS. And also to write to my cardiologist to explain exactly how much I am needing to sit down at the moment, on what occasions I was planning on using a wheelchair (probably only at work and not all day!) and how I think it will leave me with more energy to put into structured exercise in the evenings. This is where I really need help from everyone on here. I doubt that there is any proper medical evidence regarding wheelchairs and POTS but if everyone can tell me their wheelchair experiences (how you were before the chair, how much you used it initially, how much you use it now and how bad your POTS is now (and any good/bad POTS spells)) I can present the information to him. Also if anyone has appointments coming up with friendly docs would you mind asking their opinions on wheelchairs for POTS? I realise that this is really cheeky of me but I don't know where else to turn for help. I anyone has any info that they don't want to post on the board please feel free to PM me. Thank you all so much, ((((((HUGS)))))) Flop xxx

Hi everyone, just as I was getting used to the idea of using a chair at work and sorting funding (and wondering if a purple chair would go with most of my wardrobe) everything has fallen appart. My GP (PCP), occupational health and the disability advisor were all in favour of me temporarily using a chair for some of my tasks at work to prevent syncope and allow me to continue to work. I had a phone conversation with my cardiologist today and he forbade me to use a chair. He says that it is the worst thing that I could do for my POTS. He thinks that if I use a chair my body will get used to sitting and I won't be able to stand up anymore. He says I must stand as much as possible even if that means having blackouts. I explained about my problems with career progression - I have a chance to get on a final training scheme this summer for 2 years then I would be fully trained and able to work flexibly. This will be the last year that this training scheme will be available so if I don't go for it now my career is effectively over. His reply to that was that if I were to use a chair that my life would be over! I thought that he wouldn't be keen on the idea but didn't imagine he would react this strongly against it. The only thing that would make him change his mind is if I can find evidence that using a chair doesn't make POTS worse. What do other peoples physician's think of wheelchairs? Has anyone ever discussed one with the likes of Dr Grubb - I would love to know his opinion on the subject? Help! Flop

Persephone (and others with similar symptoms), if your headache originates from the temple and is associated with a tender scalp (+/- jaw pain on chewing) then temporaral arteritis / giant cell arteritis has to be one of the diagnoses considered. It is more common in individuals over 50yrs but not exclusive. Ask your doctor to check your ESR (erythrocyte sedimentation rate) if it is less than 40mm/hr then it pretty much excludes arteritis as the cause of the headache. Don't worry if it does turn out to be arteritis as it is fairly simple to treat with steroids. Flop

Persephone, do you have any scalp pain when you touch your temple. For example is combing or brushing your hair painful? Is the headache constant or does it come and go? What happens when you chew food? Flop

I was also struggling a lot with cognitive function after being away from work. I saw an advert on TV for Dr Kawashima's Brain Training game for Nintendo DS. I asked my parents to get me one for my birthday and played it devotedly most days for 2 months. It is a whole host of little mind, memory and concentration tasks - some very simple like basic arithmetic but done quickly. Initially my scores were hopeless but I improved rapidly and now can score near my own age on it's "brain age" test. I'm sure that the same exercises could be done without the fancy Nintendo but the addictive tendency of computer games helped me to stick at it and practice daily. Basically I think that like a muscle if you don't use your brain it looses that ability to do things. Our brains are often short of blood and oxygen but few of us will be so unfortunate as to have suffered a true permanent brain injury. I think the secret is use it or loose it but take heart that I managed to get mine back through practice and repitition. My memory isn't as good as it once was but I have just managed to study for and pass an exam for work which I couldn't have done a year ago! Happy mental exercising, Flop

yep potassium is an electrolyte (K+). Electrolyte just means anything in the body with an electrical charge associated with it if it isn't bound to another molecule. Examples are potassium (K+), sodium (Na+), Magnesium (Mg 2+). It is too long since I did A level chemistry!

Nina / Michele, my cardiologist was referring to lidocaine without epi when he was telling me that local anaesthesia is not good for POTS. When I had my reveal inserted it was lidocaine without epi that the cardiologist used as he was aware that epi can cause heart rates to soar in POTS patients. I don't know if it was actually the LA or just the stress of having a minor procedure but I vomited all afternoon and then was really dizzy / wobbly for several days. That said it might just be a weird reaction of my body. If you've been ok with dental anaesthetic in the past it probably won't be a problem this time. I didn't mean to scare anyone by telling you what my doc said - just sharing info. Hope everything goes smoothly and is not too painful. Blackcurrant electrolyte mix to sip through a straw if your moth is sore might be a good idea for afterwards.

Hanna, for the airport security line I would use a wheelchair whilst waiting - they usually have airport ones that you can borrow, I'd phone and check before you go. Not sure about the seating on board - try ringing the airline helpdesk. Hope you have a good trip, Flop

I think my cardiologist thinks that I may have this. He had me do a 24hr urine collection for sodium then put me on a 3month course of slow sodium. Unfortunately when I come off the sodium tablets my POTS symptoms really flare up so I have been on them continuously for the last 18months. He wants me to do another 24hr urine test, this time whilst on the sodium to see what my levels are - if they are still low he says that I must be loosing sodium somewhere. Flop

Ami, they sound like such a brilliant idea! Where I work it is very hot so I wear summer tops and blouses in the winter and some hiddeous baggy square M&S blouses in the summer. The blouses look awful but hide quite how much I am sweating, and at least they are loose fitting. I shouldn't berrate them too much as my Mum got them for me and they have been lifesavers but I look like lamb dressed as mutton. I could quite easily do the Indian look and have it come accross as an individual sense of style rather than the no style sense at all that I appeared to have last summer. I'm in the UK too, so please do share details of any retailers. Thanks, Flop

Have loads of fun and take some pictures to share with us!

Elegiamore, you were exactly right when you told me to look at all the love in this thread. I keep logging in and printing it out so that when I feel down I can remind myself of the support that you are all offering to me. It really does help me cope better even when I get disappointed so easily. I have just had a few days without a blackout and was going to post to celebrate but have had one this evening in the computer room - now have a split lip from arguing with the edge of the desk. grrrrr! At least my teeth are ok - could have been much worse! Flop - my user name seems to describe me quite well at the moment

I'm posting things in the wrong order - I was sure I wrote this yesterday but as it isn't on the site I either dreamed it or pressed the wrong button! A few days ago I saw my employer's disability advocacy worker (I didn't know that such a position existed and now wish I'd met her months ago). She was really helpful and explained things about the UK 'disability discrimination act' and 'access to work'. She made it clear that her job was to help me keep working and liase with my managers, supervisors and government funding bodies to enable me to work the best I can by making modifications to my job / getting equipment for me. Even before I was able to mention wheelchairs she started by asking about my dyslexia - I declared dyslexia on my job application form years ago. She found out I have never been assessed for Irlen Syndrome and is arranging to get me tested and if needed coloured glasses to help with my reading. I have seen so many people about dyslexia over the years (especially when I was a student as I got a disabled students allowance to buy dictaphone, computer and special softwear so that my computer can read text out loud to me) but no-one had ever mentioned Irlen testing. She already had convinced me that she was a wonderful person before we got round to the wheelchair issue. Wheelchairs - she supported me in that if occupational health think it is a good idea then she will organise funding to get one for me. As I want a really lightweight chair so that I can propel myself and lift it into the car I knew that an NHS one would be no good so thought I was going to have to save ?2000 to buy one. She suprised me by suggesting that they should buy me an electric wheelchair so that I don't get fatigued as the building is very large. Personally I think I would rather have a self-propelled as I think I would be more "comfortable" using one. ie I would feel less of an idiot sitting in one. I think I'm starting to accept the idea of a chair a bit more. Please keep the advice coming - your advice and encouragement has been fantastic and is really helping me to see all the options in this difficult matter. Flop