flop

Whilst you symptoms don't sound exactly like a condition that a friend has it would be worth getting it checked out. Myasthenia Gravis causes muscle weakness. My friend takes mestinon to treat her Myasthenia. Hopefully you haven't got that but worth getting checked for it. Another thought is electrolyte probs - low potassium can cause weakness and even episodes of paralysis, next time you have an episode get your bloods checked whilst you are weak (probably easiest to go to the ER). Hope you get some answers soon, Flop

I'm not on a beta-blocker anymore (was making my severe allergies worse) but I did take one for many years. Bisoprolol seemed to be my wonder drug for about 2 years - I still had POTS symptoms but I didn't faint and stopped getting episodes of SVT whilst taking it. I started off on a really baby dose (like they use for people with heart failure) of 1.25mg once a day. After a few weeks I went to 1.25mg twice a day. The next year I increased it to 2.5mg twice daily. Flop

As this is a new symptom I suggest that you should report it to your doctor, best to get these things checked out. Flop

If you can split your credits over two semesters then that may be one of the best ways to give yourself a good shot at getting good grades. POTS related accommodations that I can think of would include: wheelchair for getting between classes (someone to push the wheelchair if it is a manual chair) stool so you can raise your feet in class access to cold drinking water temperature to be kept within certain range in your classrooms (lecturers to turn heating up or open windows before your classes) facilities to "recharge" a cooling vest (if you wear one) lecture slides provided as handouts allowed to tape-record lectures so that you can listen again when lying flat allowed to get a friend to record lectures if you are too ill to attend yourself advance warning of tests and essay deadlines. Just a few thought, hope you manage to get the accommodations you need to let you suceed in your studies. Flop

Hi Persephone, I'm sorry to hear that you were put through such an ordeal in the hospital. I read your post earlier on my iPod and planned my reply (too fiddly to type on a touch screen) but Summer has beaten me to it. I agree that one nurse can't safely lift/move a patient who is on the verge of fainting but he/she should have known what to do. The standard advice for an imminent faint is to lie down or squat but if that is not possible (eg in a cinema) then you should put your head between your knees (head lower than heart). The ideal action from the nurse would have been to get your head between your knees, call for help / emergency bell, then put you on high flow oxygen. By insisting that you sit bolt upright the nurse put you are risk of a full faint and if they had continued to keep you upright then it is likely that you would have had a hypoxic seizure. I would encourage you to make a complaint, it will trigger a "clinical incident" which has to be investigated so that lessons can be learnt and staff can be given training to ensure that this doesn't happen again (to you or anyone else). If they were ordinary ward nurses then you could raise the issue with the ward manager or go higher to the surgical matron. Another approach (and better supported) is to contact the PALS team (Patient Advice and Liaison Service). PALS are usually non-clinical staff who's job is to help sort out any concerns / difficulties that patients have with clinical staff (or anything else related to the hospital). PALS can take your concerns and get them investigated and fed back to you without you having to come into contact with the nurse involved. I hope that you have a good GP that you can keep in touch with over the next few days to make sure that you are okay to be at home. Perhaps they could get a district nurse to come out to you? Take care, Flop

What are your symptoms - do you have purulent discharge (yellow / green / foul smelling mucus)? Who suggested the hydrocortisone, was it the ENT doctor? Your PCP? An idea from someone else? Sometimes sinus infections can be hard to tell apart from allergic sinusitis. Infections are best treated by antibiotics, nasal rinses or if nothing else works surgery to washout the sinuses and create a drainage passage (I had this done a couple of years ago). Allergic sinusitis has similar symptoms but the mucus is clear / white / cream coloured. Allergies are best treated with anti-histamines, singulair, steroid nasal spray or in severe cases steroid drops (nasules). What sort of sinus rinses are you doing? I have found that using a Neilmed squeezy bottle is more effective than a neti-pot as you can get a higher pressure on the water stream so get the water higher up the nasal passages. If it is a sinus infection then it is most likely that hydrocortisone tables will make the infection worse (you shouldn't take steroid tablets if you have any untreated infection). Steroids damp down the body's immune response so your body would stop trying to fight the infection. If it is allergic sinusitis then technically hydrocortisone would help but it is rather taking a sledgehammer to crack a nut - there are other treatments (as above) that should be tried first. Hope you get some relief soon, Flop

It is so good to hear that you are feeling the love, have a ((((((((((hug)))))))))) back too! Flop

Hi, welcome to DINET! I'm also from the UK. I was diagnosed 5 years ago by a cardiologist at my local district general hospital. I now also see Prof Christopher Mathias at the National Hospital for Neurology & Neurosurgery, Queen Square, London. I have over 5 years experience of being a POTS patient in the NHS. Please feel free to PM me with any questions. Flop

I find that I am fine on stairs in my MBTs I use the handrail just in case I wobble but haven't fallen over due to MBTs. Flop

I have been taking Singulair (Montelukast) for a couple of years for my severe hayfever. If I don't take it my allergy symptoms are worse but also my POTS is much worse too. I have never managed to get my doctors to understand that bad allergy symptoms make my POTS much worse (when I took prednisolone my POTS virtually vanished). I suspect that MCAD may be an issue for me but my immunologist says that "MCAD is made-up and not a proven illness" so there is no way that I will get the tests done. Flop

If the thirst is new and persistent I would get your GP to check just to make sure that you haven't developed diabetes. I used to take "slow sodium" tablets, then I switched to rehydration drinks (lucozade sport raspberry was my favourite non-fizzy drink) but the sugar in them caused me to gain weight (I actively avoid artificial sweetners and diet drinks as my brain fog gets worse). Now I drink water with a sprinkle of himalayan salt (just a tiny pinch, makes the water feel softer but not taste salty). Good lower-fat, high sodium alternatives to crisps are pretzels and salted popcorn (no butter if want low cals). If you search the forum for "24 hour urine sodium" you should find a load of old posts that I wrote about using 24hr urine tests to monitor if your salt intake is the right amount. Flop

Hi, I'm not surprised that you are confused by what your doctor said and what they are now advising. If only POTS was so simple as problem a causes problem b - unfortunately it is a chicken and egg situation. I think that for me initially my BP drops just a tiny bit, then my heart rate speeds up, initially this helps maintain my BP (ie helpful), but my HR continues to rise and then is becomes counter-productive and actually contributes to the low BP (when the heart beats very fast it doesn't have enough time to fill properly between beats so the amount of blood that it pumps (stroke volume) is reduced. Cardiac output = stroke volume x heart rate initially increasing heart rate will improve cardiac output, but only until it messes up the stroke volume. Everyone with POTS is slightly different and different meds work for different people. Personally I have done better with meds to lower my HR than I did with meds to raise my BP. Others find midodrine / florinef works best for them. Really it is all a trial-and-error process of seeing how you respond to each medication that you try. Only change/add/stop one medication at a time so that you can match your symptoms to the medication changes. Flop

I was sure that I have posted about MBT shoes before (I have been wearing them on and off for about 2 years) but my forum search only showed posts from 2006/7. In October 2008 I gave a presentation on living with POTS at the STARS conference (a meeting for patients and doctors/nurses all about blackouts) - I included a picture of my MBTs in the powerpoint under my "what helps" section. Unfortunately that day I was really bad POTS wise and despite wearing my MBTs I spent the hour before my presentation lying on the floor at the back of the lecture hall! "Masai Barefoot Technology" are shoes that are designed to mimic walking barefoot on sand. They have a rocker-bottom sole (curved from heel to toe) with a very soft/squishy eliptical area under the heel. When you walk it feels like your heel is sinking into soft sand and your weight then rolls forwards through your foot. If you get these I would advise being properly measured and fitted in a specialist store for your first pair. You need to learn to balance and walk in these (probably not good for people with numbness in their feet or who tend to stumble / have balance problems in normal shoes). One of the big advertising features is that the MBT shoes make you unstable, to walk and even stand still you have to use the muscles in your legs, bum, back and stomach to assist your balance. The company boast that this increased muscle work burns more calories and tones up your muscles. I worked out that if the shoes make your leg muscles contract that they must also increase the skeletal muscle pump (contacting leg muscles helps push blood up the legs and back towards the heart - improved vascular return). My physio initially suggested them for me to improve my core stability and essentially do "wobble-board" exercises whilst walking about. It took me quite a while to be able to wear the MBTs all day (muscle ache, balance issues) but over about 6 weeks I built up to it. I don't know why but I hadn't worn them for ages until about 6 weeks ago when my Dad mentioned them. I found them in my cupboard and since then haven't worn any other outdoor shoes. I think that they really increase my standing and walking times. They also help my back pain. I have never tried any of the other brands so can't say if they work the same or not. MBTs are expensive but I have invested in 2 pairs that "do" for most occasions - black nubuck trainer style and navy leather Mary-Jane style shoes. Flop

Your reactions to some fruits may be "oral allergy syndrome" - I have this and have a list of many fruits that I can't eat due to swelling and itching of my lips, mouth and throat. I do carry an Epi-Pen just incase of a very severe reaction (have never needed to use it). My allergy specialist was quite worried about giving me an epi-pen as it would cause high BP and very fast heart rate. He wrote to my cardiologist who said that in an allergic emergency (can't breathe or full anaphylactic shock) that i should use the epi-pen but must get an ambulance immediately so that my HR and BP can be monitored. For less severe reactions I have a primitene mist inhaler (adrenaline inhaler, in the UK is a named-patient prescription) which I spray into my mouth (possibly works locally in the mouth and throat to stop the reaction). Allergy / told to avoid medication - some people have allergic reactions to medications (usually one or more of rash, itch, wheeze, anaphylaxis). Some people have adverse reactions to medications, these reactions can be very severe / dramatic but if they are not caused by the immune system they are not an actual allergy. The medication should still be avoided to prevent a repeat of the adverse reaction. Nitroglycerine (= GTN) - this medication relaxes the blood vessels and lowers blood pressure. Adrenaline (= Epinepherine) - this medicine constricts (tightens) blood vessels and causes a fast heart rate. For most people the tiny dose of epi in a local anaesthetic mixture won't have any noticable effects (except for less bleeding and longer-lasting numbness). People with POTS are often sensitive to the epi and feel palpitations / tachycardia. I always ask for local anaesthetic without epi. Local anaesthetic - some people with EDS don't get full benefit from local anaesthetic, sometimes different meds work better than others. Regarding the eye surgery I would write / fax / e-mail the eye surgeon clearly stating what reactions you have had in the past and giving contact details for the specialist you saw after the lidocaine reaction. Ask for the surgeon to investigate what anaesthetic option is best for you given your previous problems. Include a list of all your medical diagnoses and a list of your current medications. Flop

Your rise in HR (30 or more) can happen at any time during the first 10 mins of TTT or poor man's tilt. Your HR doesn't have to stay high. Mine tends to peak then start to drop again, it may peak more than once as we often have labile heart rates. Flop

If you think that you meet all 9 of the Beighton criteria then you definately need to be evaluated for EDS. There isn't a specific test for EDS (some of the types such as vascular EDS they can look for the gene on a blood test, but a negative test doesn't mean that you don't have EDS). For most people an EDS diagnosis is based on your history of symptoms and a clinical examination. There are a set of criteria called the Brighton criteria (they include the similarly named Beighton criteria) that guide a doctor to diagnose hypermobile EDS. (Prof Rodney Grahame an EDS expert who diagnosed me says that the "Joint Hypermobility Syndrome" is the same as "Hypermobile EDS". In the UK you would need to see a rheumatologist that is knowledgable about EDS. In the USA most people seem to be diagnosed by geneticists. Flop

Sounds like you need to see a doctor. Do you have any other symptoms? Maybe you have got a chest infection / asthma ie don't assume it is because of POTS, any new symptom should be checked out by a doctor. A low HR can make you feel breathless so it may be linked to that. Do you take any medications to lower your HR like beta-blockers, calcium-channel blockers or Ivabradine? Hope you feel better soon, Flop

Hi with POTS the main diagnostic criteria is the initial rise in HR (during the first 10 mins of standing). My HR usually goes up a lot at first then settles to 90 - 110 ish if I keep upright. It will then vary as it likes! Some people have their HR climb up then slow down, some climbs up and stays fast, others it keeps on climbing till they sit or faint. Most people react differently at different times so hard to always see a pattern. Unfortunately the target HR just doesn't work for us (either on or off meds). Listen to your body and try to stay at a HR that isn't horrendous (best to ask your doctor). Flop

Hi with POTS the main diagnostic criteria is the initial rise in HR (during the first 10 mins of standing). My HR usually goes up a lot at first then settles to 90 - 110 ish if I keep upright. It will then vary as it likes! Some people have their HR climb up then slow down, some climbs up and stays fast, others it keeps on climbing till they sit or faint. Most people react differently at different times so hard to always see a pattern. Unfortunately the target HR just doesn't work for us (either on or off meds). Listen to your body and try to stay at a HR that isn't horrendous (best to ask your doctor). Flop

Just a quick thought - in some people having a high load of simple sugar (like a regular sprite) will cause a surge in blood sugar levels that then leads to a large release of insulin (too much) and ends up with the blood sugar falling too low ie reactive hypoglycaemia. Usually a reactive hypo to food would come on later but a large soda may cause such a quick reaction. So Mack's instinct to avoid simple carbs is probably the right thing to do. You will never know if that result was correct / false low / low caused by soda / low caused by near faint. I hope his new eating habits help even out any symptoms that may be due to glucose fluctuations. Flop

Many of us have "exercise intolerance" where what most people would call gentle exercise causes us to feel fatigued and more symptomatic than usual. Yogini has the right advice - start slowly with a tiny bit of exercise and practice regularly until your body learns to cope with the exertion. When you can do 5 mins without feeling dreadful then increase to a few mins more. Gradually you can re-educate your body to allow you to exercise more. Ok you might not get up to running marathons but being able to do 20 mins exercise several times a week is a good goal and should help you to feel better generally. Flop (enjoys Tai-Chi when she has the energy!)

The POTS diagnostic criteria is a rise in heart rate of 30 beats per minute (or more) or a rise to more than 120/min when going from LYING to standing. The rise from 80 to 110 that you describe from sitting to standing is suggestive of POTS. A resting heart rate of 80/min is a little higher than average but within the normal range of 60-90/min. You can be diagnosed with both POTS and NCS. I suggest that you monitor your HR a few times whilst lying quietly for several minutes then watch the change in HR as you stand up and stay standing for 10mins (if you can manage that long). If you have a BP monitor then also do you BP several times whilst doing the above (this is essentially a "poor man's tilt test"). Flop

POTS itself won't show on an EP study. Durring the study the doctor will have been trying to induce your SVT, but sometimes they hide from the doc and your heart behaves prefectly normally - frustrating! I had an EP study done in February 2004 (before I developed POTS symptoms) because symptoms of arrhythmias but no rhythms caught on holter. My EP study was totally normal too. However since then another holter has recorded atrial tachycardia, they just didn't find it during the EP. Flop

I play lots of simple puzzle games on my Nintendo DSi, laptop and lately my new iPod touch. "Chuzzle" is a favourite of mine - cute fluffy pom-poms with eyes that you have to match into groups of 3. Yery addictive but doesn't need much concentration, especially on the "zen" game. I also like "bejeweled" and other repetitive games. Flop

Specific gravity is one measure of how much "bits" are in your urine (heavy particles). Because we all drink loads of fluids we would all probably have low specific gravity too. 24hr urine creatinine is the most reliable test so if that was normal I owuldn't worry too much. Flop PS - welcome to the forum!