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If the ringing in your ears doesn't correlate with your POTS symptoms then it might be something completely separate like tinnitus. It is probably best to have a thorough ENT evaluation including audiometry to get things checked out. It sounds really frustrating - I hope it settles down! Flop

My Echo showed a trace of TR and trivial MR but no MVP. Flop

Hi HEnsor, my previous alert necklace was quite pretty and silver plated but I managed to become allergic to whatever metal was underneath the silver plate - only I could be allergic to an allergy alert necklace!!! I knew that I would have to pay a lot for a solid gold or solid silver bracelet which I can't afford. So I got a stainless steel one and am really happy with it, it doesn't look cheap and nasty just functional. I think that one bracelet was ?19 then they had an offer to buy more at half price so I treated myself to a fabric sports band for the gym and a necklace so that I can wear whatever goes best with my outfit. Flop

The company I used for my most recent alert bracelet is called Universal Medical ID they operate several websites. The USA site is http://www.americanmedical-id.com/ and the UK site is http://www.universalmedicalid.co.uk/. Their webiste where you can store all your medical information is called Online Medical Registry (www.myOMR.com). Some doctors / hospitals are not allowed to put things like USB drives into their computers for fear of getting a computer virus, it should be safer for them to log into a website but still might not be allowed. For me it is a useful place to store records from many different hospitals. All of my essential information is engraved directly on the bracelet, it reads: Front Autonomic Dysfunction Syncope, POTS Ehlers-Danlos III Hypermobility Type Asthma, Allergies Back www.myOMR.com XXXXXXX Name Name Surname DoB NHS number Epi-Pen carried Flop

There are several different ways to "carry" your medical information so that it is available in an emergency. 1) a medical alert necklace or bracelet with info engraved on it 2) a USB memory stick either a special wristband one as in the posts above or an ordinary USB stick with a medical logo / charm attached 3) a necklace or bracelet giving an emergency telephone number to a service who hold your data and can fax it to the hospital 4) an online medical record maintained by yourself with the access details on a bracelet / necklace. I used to have a necklace with a special telephone number to an ambulance control desk who held my basic medical details. However I had to pay an annual subscription of ?20 to remain a member, also changing my information was a hassle as I had to write a letter to the ambulance service. I now have a bracelet from a different company who offer both the telephone service but also a website (my online medical record) where I can upload my own medical information and scans of ECGs etc. The URL and access code are both on the bracelet and best of all there is no annual charge. Flop

Ooops, thanks for pointing that out Persephone - I didn't mean that only older men have micturition syncope. When I was in hospital in February after my general anaesthetic I was passing out almost every time I urinated too! (Very embarrassing as I was usually found face down on the bathroom floor with my backside on display to the nurses!). Flop

Hi, sorry I didn't see this thread until now. Yes it was Dr Ingle that I had my nightmare appointment with in November 2009. He is a consultant neurologist so I am not sure exactly how the clinics work or why the patients are shared between him and Prof Mathias. Previuosly I had either seen Prof Mathias himself or his registrar (resident). When I saw Dr Ingle I was very frustrated, for a start he didn't introduce himself so I didn't know his name or if he was a trainee or a consultant. It wasn't until I got a copy of the clinic letter 6 weeks later that I found out his name. I have POTS and EDS so have been told by both Prof Mathias and Prof Grahame (EDS specialist) that I am likely to have some degree of POTS for the rest of my life but that it can be controlled with medications. Dr Ingle informed me that I got POTS from a growth spurt in my teens and that I would grow out of it by the time I was 23 or 24 - interesting, I was 25 when I became ill and i am 30 now!!! I had seen Prof Mathias in May 2009 and he had written in a letter to my income protection insurance company that the next step would be to get me admitted for repeat autonomic testing and a trial of either octreotide or pyridostigmine. He also wrote that he thought pyridostigmine would be a bad idea because of my GI problems. I was expecting the November appointment to baiscally set up that admission. No, Dr Ingle told me that I didn't need any medication for my POTS (even though I am so ill I haven't worked for nearly 2 years). He also went through my medication list and told me to double the dose of Ivabradine (I was already on the maximum dose) and to stop all of my other medications (Paroxetine, paracetamol, codeine, fexofenadine, ranitidine, montelukast, salbutamol inhaler, adrenaline inhaler, epi-pen) as they were the cause of my symptoms. I don't function at all without my allergy meds and only use inhalers very infrequently so they can't be the "cause" of my tachycardia. When I asked about the repeat testing I was told that my tests were only done in January 2008 why would they need doing again so soon. I tried to explain what Prof Mathias had told me but the dr talked over me. He said that maybe he would repeat my tests in 2011 but not before then. At that point I got so frustrated that I cried. Uh-oh, big problem! Suddenly I was told I absolutly must not stop my paroxetine as i was clearly depressed and that I needed CBT (cognitive behavioural therapy). I tried to explain that I had already been evaluated for CBT through the pathways to work scheme and had been told that I didn't need CBT. Again the dr wouldn't listen to me. I cried most of the way home on the train. It was so hot and I was so dizzy that I spent most of the journey sitting/lying on the floor in the vestibule where it was slightly cooler. The emotions and crying probably contributed to me fainting as I went back to my seat to get my coat etc before getting off the train - cue a 999 call and a trip to hospital with a broken wrist and dislocated hip. I was so angry and frustrated that the dr just wouldn't listen to me and seemed to have no idea what physical problems I have. He wrote in his letter that I "admitted I was phobic about going out alone" - umm, how come that every single day I make myself go out shopping or for a decaf-coffee just to get out of the house, phobic???? He also didn't write the medication changes that he told me to make. Both my cardiologist and myself wrote to Prof Mathias to complain about the appointment - apparently Prof Mathias could see no reason for the medication changes and I "misunderstood"!!!! (I write everything down during appointments so I have the notes I made that day". As a result of the complaints Prof is repeating my testing next week and I will be seen in clinic. Unfortunatly in the UK we have very little say in which doctor we see, we can't "fire" a doctor or even get to see the consultant. I wasted a whole year getting the run-arround at my local hospital because my cardiology consultant was away both times I had appointments and I ended up seeing junior doctors who had no knowledge of POTS at all. I did go for a CBT assessment in February this year (I knew if I refused they really would think that I was crazy). The therapist confirmed that i am neither depressed nor anxious but that I am physically ill and need treatment!!!!! Persephone's consultant on the south coast sounds fantastic, I wish I lived a bit closer so I could justify getting referred to him. I think that the doctors who are interested in research often aren't that interested in actually treating patients so a big name hospital doesn't mean the best clinical care. What we need are doctors who are knowledgable about POTS, keep up to date with the latest experimental treatments and are willing to try out many different medications until they find the ones that help an individual patient the most. We are all different so there is no good just prescribing the same meds for everyone. Rant over and hugs to Janey! Flop

Hi SJ, neurocardiogenic syncope (NCS) is a type of fainting caused by over-stimulation of a nerve that controls the heart. Basically the vagal nerve wanders all over the body and can be stimulated in many ways. The vagal nerve when stimulated causes the heart rate to drop. Some people find that vagal stimulation causes the heart to go very very slowly (or pause briefly) and the blood pressure to drop. Both passing water and opening your bowels can over-stimulate the vagal nerve in susceptible individuals. The first is called post-micturition syncope (more common in older men with enlarged prostates) and the second is defecation syncope (often linked with constipation problems). I hope your friends daughter can get some good treatment to get her fainting under control. Flop

Hi SJ, I don't know the values (one test I haven't had!) but I'll try searching too and see if I can find it. Flop

Bother, the smilie faces are supposed to be the letter B with ) which just happens to be a short cut to the emoticons. I also meant to say that narrow pulse pressure can really make you feel awful. My BP is usually high but on my first tilt table test it went to 96/90. My body was constricting all my vessels to keep my diastolic BP high but I was so tachycardic at 170/min that my cardiac output was low. My doctor told me that with only 6mmHg difference in the pressures that there was almost no forwards blood flow happening (I felt awful and was on the verge of passi g out when they put me flat). Flop

The body is always trying to get more blood to our brains. The cardiovascular system has three ways of increasing BP: a) making the heart beat faster making each individual heart beat more forceful (increaseing the volume of blood pumped in each beat) c) increasing systemic vascular resistance (getting the blood vessels to constrict) a) and both increase the amount of blood being pumped by the heart cardiac output = heart rate x stroke volume cardiac output = a) x litres/min = beats/min x litres/beat if only a) and were involved you can see how slowing the heart rate could directly lead to a drop in cardiac output that would usually mean a drop in BP too. However we mustn't forget about c) the systemic vascular resistance or in other words how constricted or dilated the blood vessels are. In somone with hypotensive POTS the blood vessels tend to be dilated causing low BP. In hyperadrenergic POTS high levels of epinephrine and norepinephrine cause the blood vessels to contract and cause high BP. If only it were quite that simple. There also seem to be some people (like me) who pool blood in the veins but still have high BP. I have never seen this written down but my personal thought is that the veins dilate but the arteries constrict - ie totally messed up! The one thing that is certain is that the doctors are only beginning to work out the mechanisms and causes of POTS. There are certainly several different processes going on in different people that all give the same symptoms. So POTS is more a group of illnesses rather than one illness. This is why there is no one treatment that works for everyone with POTS - we all respond differently to medications and have to accept the "trial and error" approach to treatment. I hope I haven't completely befuddled anyone? Flop

Commiserations to both of you stuck on Warfarin (Coumadin). I know lots of people taking or who have taken Warfarin but I didn't know about the side effects you are both having. Aspirin and Clopidogrel (Plavix) both work by reducing the "stickyness" of the platelets in the blood. When a blood clot forms fibrin makes like a spiders web or scaffold and the platelets stick to it to make the clot. Both aspirin and plavix are used for people with coronary heart disease to reduce the chance of heart attack. Warfarin (Coumadin) works differently as it alters the clotting cascade in the blood effectively meaning that the blood clots very slowly. This is important if you have a DVT or PE where the natural course would be for the clot to keep getting bigger without treatment. In most cases aspirin or plavix would not be powerful enough for these big blood clots. Yes Warfarin is used as rat poison. This is because a large overdose of warfarin will cause you to bleed to death, essentially the rats are given an intentional overdose that would lead to bleeing in the brain. To prevent this happening in people you have to gave frequent blood tests to make sure you are on the right dose. There is a new drug to replace warfarin coming out soon but the last new drug lead to about 3500 deaths from liver failure before it was taken off the market. Flop

Poppet, If you have had problems with water getting in your ear with a neti pot you may find it easier and more comfortable to use a Neil Med system. It is a squeezy bottle that directs a flow of warm salt solution up your nose. I find it easy to get a steady steam of fast moving water that goes in the right direction. You could put the antibiotic solution into the bottle too. I hope you get some relief soon, Flop

DD your GP is wrong. Dr Mathias works at a specialist unit that takes referrals from all over the UK. Sometimes your GP needs to apply for special funding for out-of-area referrals but if there is no-one at your local hospial that reals with autonomic problems then the funding should be approved. I suggest that you print out a copy of the e-mail from Prof Mathias and take it to your GP. If they still say no ask to speak to the practice manager. After that I would make a complaint - hopefully it won't come to that. Flop

I use a shaped memory foam pillow from Ikea, it is designed for side-sleepers with a cut-away for your shoulder and a raised part to fit the hollow of your neck. Love it so much I bought another one to leave at my parents' house for when I stay there. Flop

If you have instability of the SI joint then I'll back the suggestion of a serola support belt. I dislocated my SI joint last summer when I fainted and fell backwards down a full flight of stairs. After a lot of exercises and pain killers my physio suggested a serola belt. My right leg feels much stronger with the belt on and I can stand up from crouching without using my arms to help! However the physio did advise me not to wear it too much. Flop

Hi Mirry, I'm in the UK too. I take "slow sodium MR 600mg" tablets. They were first prescribed by my cardiologist but my GP now prescribes them. My initial dose is 10 tablets daily then after a couple of months I do a 24 hour urine sodium test. I would ask your GP to write you a prescription for slow sodium otherwise you will spend a fortune - I go through 3x 100 tablet bottles each month. If you pay for prescriptions then consider a pre-pay certificate which might save you money. Flop

It is very common for injections to have either sterile water or sodium chloride 0.9% as the fluid that the drug is mixed with. For IM injections they usually try to keep the volume of the injection below 1ml and certainly below 3ml (as more liquid in injection = more pain). I suspect that the actual amount of sodium in your B-12 injection is tiny and probably wouldn't have any effect on most of us with dysautonomia. Some people with POTS get IV saline to help with their symptoms. In this case it would be a litre or more of 0.9% Sodium chloride directly into the bloodstream. People can have sub-cutaneous fluids (like the cats) but it is not a good way of getting fluids or salt, it is only used when IV access is impossible. The best way of getting salt is still by eating it. Either adding salt to food and drinks (eg gatorade, broth) or by taking salt tablets. In the UK I get "slow sodium tablets 600mg" on prescription and take 10 every morning (=6g sodium), unlike thermotabs or buffered salt tablets these are very gentle on the stomach as they actually release the salt from a matrix once they have gone through the stomach so no nausea or cramps. Flop

When I first became ill I had exactly the same problem. I didn't want to go anywhere alone where I might faint and create a scene. I felt okay at home with my family and at work because I had good collegues who knew just to lift my feet up, fetch a glass of cold water and let me rest - but I didn't want to go to the shops or the cinema or anywhere where fainting would cause a fuss. I didn't want to talk to my doctor about my fear because I thought I would be labled as "anxious" or that they would think the fainting was all in my mind! I found that talking about my fears helped me to conquer them. I actually realised that when I was very anxious my tachycardia was even faster than normal so being frightened actually made my POTS worse. I didn't see a therapist but this is the sort of thing that can be helped by therapy. I got some books on anxiety from the library and then started to learn basic meditation skills. Nothing fancy, just how to relax my mind so that I am not thinking about anything. At about that time I also started going to a Tai Chi class (I wanted gentle slow exercise to help my joints without making my tachy). Now I am more comfortable with my POTS and the fact that I sometimes faint. I do adjust what I do but I am now happy to go out and about alone. Sometimes I do faint (yes, had one today whilst at my orthopaedic appointment!) but I have learnt that as soon as I wake up I say "I'm okay, I don't need an ambulance, I faint a lot". By being able to tell the strangers around me that I'm okay, they also calm down and it stops people from making a fuss. I do have a bracelet with my medical info incase I faint and hit my head hard, but I haven't needed it so far. I hope you can learn to live with your symptoms so that you can still enjoy going out and doing things. POTS stops us doing many things but enjoying life needn't be one of them! Flop

I'm sorry to hear that the doctor who requested the tests doesn't want to follow up with you, maybe they feel that don't have the experience to deal with autonomic issues? As others have said you really need a doctor to go through the tests with you and explain what the results are and if they can give you any information about treatment and the severity of your condition. From reading the results I think the lable "pandysautonomia" has come from the fact that there are abnormalities on several of the tests, not just one test which might have given a more specific diagnosis. I have never seen these sorts of results before but especially looking at your TTT there isn't anything that would make me panic if they were my results (sorry - does that make any sense?? What I mean is that there are obviously issues but I can't see anything that makes alarm bells ring). I notice that the doctor who requested the test is not the doctor who reported the test. Can you get an appointment with the doctor who reported the tests as he is clearly an autonomic specialist and could probably explain things to you properly. I hope you get some answers soon, Flop

Some people actually take beta-blockers to prevent migranes. Beta-blockers dilate (widen) blood vessels as well as slowing your heart rate. Because of this you may need to increase your salt & water intake or add a medication like fludrocortisone to keep your BP up. Flop

Hi Deb, I know that often GPs like to have one doctor in charge of your care, maybe if you like today's dr better than your regular gp you can switch to seeing her. Once she knows you a little better she may be happier to make decisions without going back to the other dr? In the UK there are only certain tests that GPs can request directly (for example they usually can't ask for a CT or MRI that request has to come from a hospital consultant). I think that a TTT would be the same, rather than asking for a tilt test you may do better asking for a second opinion from a specialist. Many of us start out by seeing a cardiologist and as you are having fast heart rates and palpitations it would seem resonable to ask to see a cardio. In London Prof Mathias (neurologist) is good for getting testing and a diagnosis but he is more interested in research so not so good for ongoing treatment. Flop

Once you have caught the cold sore virus (it is a human herpes virus or HHV) it lies dormant in the nerve ending that goes to your lip. At certain times the virus re-activates and causes a cold sore. It is most likely to re-activate when your immune system is low (ie when your body is stressed). A classic example is when you are fighting off a cold, hence the name cold sore. In the UK you can buy anti-viral creams (eg Zovirax) from the pharmacy or get anti-viral tablets on prescription to help clear up the sore. Hope you feel better soon, Flop

Hi, from your HR numbers it looks like you DO fit the criteria for POTS. They are an increase in HR from lying to standing of 30 or more bpm OR increase to 120 bpm, either HR criterion must be accompanied by symptoms when upright. Diagnosis of POTS is not dependent on any BP readings. The diastolic BP is a separate issue. Most people with POTS are not diagnosed with postural hypotension or postural hypertension. The BP fluctuations are all part of each person's own POTS (remember that POTS is not a disease, it is just the name given to a collection of symptoms). One of the ways that the body can raise it's own BP is by constricting the blood vessels, this will raise the diastolic pressure. The best thing to do would be to consult a doctor who is familiar with POTS / dysautonomia (try the physician list on the main DINET website) and have a formal TTT done. Flop

When we have eaten more blood is directed towards the GI tract to help with digestion and absorption of nutrients. This means that less blood is left for other things (like our head). Because of this quite a few people find that their POTS symptoms are worse after eating. If your palpitations are the sinus tachycardia from POTS then this would explain why they are worse after eating. You would need a 24 hour ECG (Holter monitor) to see if your palps are sinus tachy or if it is an arrhythmia. If the palps are due to POTS then there are a couple of tricks to minimise the symptoms: - eat smaller more frequent meals - sit down and rest after eating - avoid eating before bed - drink cold water after eating (diverts blood away from stomach) - keep a food-symptom diary to identify problem foods (for me too many carbs cause worse POTS symptoms) I hope you get your cardio referral soon and that you get the palpitations under control. Flop