flop

When I had my TTT I went dressed in a t-shirt, stretchy trousers and flat shoes. DON'T take your shoes off - standing barefoot on a hard platform is uncomfortable, I had to ask the technician to put my shoes back on for me! Take some spare clothes just in case. I got very hot and sweaty so a clean t-shirt and some body spray was welcome afterwards. Before the test starts ask if they intend to give you meds, and if so why? You can confirm a POTS diagnosis without meds. Contrary to belief you don't need to pass out durring the TTT to get a diagnosis. I did manage to hold out for the full hour (only just HR 179, BP 96/90) but my cardio said to let them know if I really thought I was going to faint and they would put me flat before I fainted. Flop

Yes, almost all of those symptoms can be caused by POTS / dysautonomia. Eyes - seeing spots, greying of vison, tunnel vision and loss of vision can all happen just before a faint. It is the eye's way of letting you know that it wants more blood flow (ie please lie down). Ears - muffled hearing, going deaf and tinnitus (ringing) can all happen before a faint. Ears - the blocked / popping sensations may be more linked to your allergies than POTS, swelling around the eustacian tube can stop the pressure equalizing itself normally. Some people find antihistamines or other allergy treatments can help this. Gastric symptoms - yep fits with dysautonomia. Heart symptoms - definately fits with POTS / dysautonomia. Mental staus - we often describe this POTS problem as "brain fog". Hyperflexible joints - there is a connection between a condition called Ehlers-Danlos Syndrome and POTS. There are many types of Ehlers-Danlos (EDS) but type 3 / hypermobile type is the most common. It is sometimes also called Joint Hypermobility Syndrome (JHS). It would be worth seeing a good clinical geneticist (in the USA) to see if any of these hypermobile problems affect you (in the UK EDS is diagnosed by rheumatologists but other people in the US have had better luck with genetics clinics). Sounds like I'd better welcome you to the club. There is an awful lot of information on this forum and the main DINET website, try not to read it all at once or you will get brain fog! Flop

Hi, I agree that it sounds like time to see a different doctor. If you do need to have a repeat TTT just ask that it is without any medication (I don't know why some US doctors use isoprenaline - in the UK if any med is given it would be GTN spray to lower BP). Good luck, Flop

I have tried it but not for POTS. A few years before I developed POTS I was seeing a cardiologist for arrhythmias that inculded an atrial tachycardia. He taught me various "tricks" to terminate the tachycardia (I would go along at 180 - -220 / min). The first was the valsalva manouver, the second was to rub on a specific part of my neck to stimulate the vagal nerve, the third was to plunge my face into cold water. Reading the wikipedia article I realise that the water trick also stimulates the vagal nerve (wikipedia calls it "cranial nerve X" = 10th cranial nerve = vagus nerve). I can remember having an episode of SVT whilst walking in the mountains of Snowdonia (North Wales, UK). I tried the valsalva and neck rubbing but nothing happened. Then I remembered the water trick and plunged my face into a huge puddle! Well either it worked or the shock of the icy water stopped the SVT! I hadn't thought of trying it for my POTS tachy, but usually I just sit or lie down which will put my HR back to normal. I guess the cold water would slow my HR but if I carried on standing up it would probably just go right back up again. I might try leaving a sink full of cold water next time I take a shower and see if it helps me overcome the tachy from the warm shower water. Flop

When I am well enough I do quite a lot of Tai Chi and Qi-gong. The Qi-gong exercises in my advanced class are pretty active so really get my heart rate up. When I am not up to going to Tai Chi class (haven't been able to go for several months) I find that walking is quite good aerobic exercise for me. I have also recently started going ice skating - I find that the cold temperature at the rink makes my blood vessels contract so I can manage to skate for 20-30 mins where I could only walk for 5-10 mins. I got my first pair of ice skates for Christmas and am looking forwards to trying them out next week. Flop

I get that all-over-the-place heart rate readings too. In fact last time I was in clinic and the nurse did my lying and standing vitals she picked the lowest of the standing heart rates (117) to write on my chart (it had gone as high as 155 even on Ivabradine). I think that Klonopin can reduce some of the autonomic weird things that we get as it affects the whole nervous system so must calm the autonomic nervous system as well as relieve anxiety and insomnia. Don't worry about the appointment with Dr Grubb - I'm sure he has many patients with whacky heart rates! Flop Flop

Complain away, then have a hug (((((Erika)))))! I remember having to come off beta-blockers before autonomic testing 2 years ago. I discovered that the best thing to do was nothing (and drink lots of water). Just rest as much as you can before the EP study +/- ablation. Good luck, Flop

Yep it is normal. For BP readings to be indicative of your actual BP the level of the cuff should be at the same level as the heart. So while sitting / standing or lying the upper arm is usually level with the heart. If you put a cuff on your arm but hold your arm right up in the air you will get a false low reading. If you have the cuff on your arm but bend over double you will get a false high reading. With the cuff on your ankle when you are lying down you will probably get a similar reading to what you would get in your arm. However when you stand up gravity pulls blood downwards so the pressure near your feet may be higher than in your arm. When I went to the vascular clinic to be measured for my compression stockings they measured the pressure in my arm and at my ankle. They used a manual BP cuff and a small doppler machine (like what is used to listen to the heartbeat of an unborn baby) to measure just the systolic pressures. In my arm the pressure was 110mmHg at my ankle the nurse put the cuff up to 240mmHg (the highest it would go) and she could still hear the blood wooshing into my feet. She had never seen anything like it before but my cardiologist said it was to be expected in someone like me who kept all their blood in their feet! Flop

Firewatcher, Klonopin (clonazepam) is a benzodiazepine medication. They are good at helping you to relax, sleep and lessen the symptoms of anxiety (which can be caused by POTS itself, not anxiety!). However they are habit forming and many people do develop a tolerance to them. Discuss with your doctor whether an occasional small increase in dose os okay, or if you would be better trying to have periods without benzos to let your body clear itself. Some people take them durring the week but not a weekends for example. Allegra (Fexofenadine). All the literature says that you shouldn't develop a tolerance or need higher doses of anti-histamines but I certainly do! Several years ago I managed fine on Fexofenadine 120mg once a day. 2 Years later I persuaded my GP to prescribe the angioedema / urticaria dose of 180mg daily. Then I found that even that wasn't enough, my mouth and throat were so itchy all the time. Standard OTC anti-histamines worked but only for a couple of hours. Eventually I saw an immunologist (allergy specialist) who has prescribed Fexofenadine 360mg twice a day (yes SIX times the usual prescription dose) - finally I have no more itching! Re meds - stay on them or stop?? I have always assessed each drug as it was prescribed (only one new drug or dose change at once) and if it helped I stayed on it. After a couple of years I usually know if something is still helping or not. For example my beta-blocker if I forgot a dose I would feel dreadful so I knew it was helping. However I also knew I had to come off it to get my allergies treated so I switched to Ivabradine (UK only). Fludrocortisone (florinef) helped initially but after 3 years the tablets changed to ones that needed to live in the fridge. I kept forgetting to take them and didn't really notice a change in symptoms. I asked my doctor and we agreed that I should stop taking them. Slow sodium - this was a big help in getting my BP up when it was low (in combination with florinef and water). I was doing 24 hour urine sodium measurements to guide my dose and as I needed less sodium I switched from tablets to dietary salt (himalayan salt in my drinking water). Midodrine just didn't do anything to help me - no effect at all, not even the tingly side-effects you are supposed to get. I was only prescribed 2.5mg three times a day. If I had my way I would have tried a larger dose before giving up on it but there was no point taking a 2.5mg tablet that did nothing to help me. At the moment for POTS I am taking Ivabradine (essential, can't function without it) and Paroxetine (paxil). I'm not sure if the paroxetine still helps with my POTS but I suspect that if I were to stop taking it that I might get depressed (have been depressed previously). I will discuss this with my doctor again in another 6 months to see if they think I should try weaning off paroxetine. Flop

Hi Ericka, sounds like you might have found the right club. Sorry that you have reason to join our group but you are very welcome here. I wish you all the best with your cardiology referral and hope that you are on the path to diagnosis and treatment. Flop

Getting a wheelchair was first suggested to me by a friend who has spina bifida. He could see how much I was struggling with being upright. I felt like a fraud because my legs work fine (well minus a few EDS problems) and I can walk fairly quickly - the problem is if I have to slow down/stop eg to look at something in a shop or to cross the road. I think that self-confidence has a big part in how others react to you being in a wheelchair. If you are able to look people in the eye and give them a big smile they mostly relax and treat you like a normal person. I found that when people stop in front of me or are blocking my path I call out loudly "learner driver coming through, watch your ankles", it usually has the desired effect and makes people smile. I have a friend with a totally different medical condition who had been loaned a wheelchair as she was in too much pain to walk. We had arranged to meet at a big shopping mall (Trafford Centre) but she did not want to use her chair as she was self-conscious about it. I said that I would use my chair too (I don't really use it much at all these days). I persuaded her that if we were 2 wheelchair users together that it wouldn't be too bad. Afterwards she was so grateful that I had got her to use the chair, she realised that she would never have managed on her crutches. I see my wheelchair as a means to an end - when I was still working all of my energy was spent at work. Getting the wheelchair allowed me to keep working for 18 months longer than I would have been able to. It also allowed me to still have a life - I had enough energy left over to meet friends for coffee or go to a quiz night (previously I had been asleep within 30 mins of leaving work and was sleeping up to 14 hours a day). Wheelchairs are not for everyone (and many of us don't need them regularly) but for getting through bad patches or enabling you to get out of the house they can be an invaluable tool. Don't be put off by some people's bad experiences. Flop

Yep - me too! It is because the pressure changes in your chest and neck during sneezing, coughing and laughing. The change in pressure has the same effect as doing a valsalva manouver. The changes in pressure also reduce the amount of blood that can flow back to the heart (reduced cardiac return) so the heart then doesn't have as much blood to pump out again, leading to lowered blood pressure and feeling dizzy. The pressure changes can also trigger the vagus nerve to tell the heart to slow down. Flop

QSART = Quantitative Sudomotor Axon Reflex Test QST = Quantitative Sensory Testing The QST sounds more like part of the testing I had done 2 years ago. They put a metal probe to touch my skin and gradually warmed up the probe - I had to tell them when it felt warm to me (my results were normal). I don't remember having a vibration test though so I may only have had part of the test. Here's a link to a little info for patients. Flop

I think that the initial reports from Mexico caused a panic as it looked like a very lethal flu strain. If H1N1 had a high death rate (like the rate from SARS the other year) then we would have been facing a major international health crisis. However the current data shows that H1N1 actually has a lower death rate than seasonal flu. However the concern remains that as H1N1 is a new virus in humans (we don't have natural immunity to it), and it is easily transmitted person-to-person, it could mix with other more lethal forms of flu (such as bird flu) in the future to form a much more fearsom virus. Either catching swine flu and having a mild-ish illness or having the vaccine should in theory offer protection against a possible future H1N1 super flu. Flop

Hi, I had my seasonal flu vaccine as usual in October (no problems). Then in November I was called to my GP surgery for my H1N1 vaccine. The UK vaccine is different to the one being used in the USA so my comments might not be relevant to many of you. My arm was REALLY SORE for about 5 days afterwards. That evening I developed a fever, sore throat, headache and muscle aches - I thought it was a response to the vaccine (the info sheet did mention short lasting flu-like symptoms). Talking to my GP later on he thought that possibly it was actually a mild version of swine flu that made me ill. His theory is that I had picked up the virus a few days earlier and it was just co-incidence that I had the vaccine that day. Either way I am glad that I was only properly ill for 24 hours - much easier to cope with than a week in bed. Flop

Here in the UK many doctors are prescribing any combined BCP to be taken for 3 packs without a break. Maybe your gynae doc would be happy for you to take another low dose BCP instead of the brand one that your insurance won't cover? Flop

Just to add to the extended antibiotic treatment, I have joined the club. Last time I saw my ENT specialist (for daily nosebleeds, allergies and recurrent sinus infections) he advised that I try taking Clarithromycin 250mg twice daily for 6 weeks (Klaricid). He said that there was a yet unexplained anti-inflammatory property to extended antibiotics and he hoped that it might reduce the inflammation in my nasal passages. The ENT doctor knows nothing about POTS so this treatment is purely aimed at my nose but I hope that it may have a positive effect on the rest of my body too. I am only on the third day of antibiotics (and currently have an acute sinus infection) but I will let you know how I get on with them. Flop

if by "going crazy" you mean your heart rate went fast durring the TTT then maybe you do have POTS. In POTS the HR on TTT goes up by 30 or more beats per minute OR goes up to more than 120/min. For example if your HR lying flat was 57/min and it went up to 98/min during the tilt then that would fit with POTS. Do you know the numbers for your BP and HR durring the TTT? Do you have a copy of your test results and doctors notes? (It is worth requesting copies of all your charts and keeping a file at home). If you ask at the appointment / soon after they are less likely to charge you for copies of charts. The high BP and symptoms you describe sound rather like hyperadrenergic POTS where there is too much adrenaline rushing round your body. Some people have had lying and standing blood tests for catecholamines to check for this, but many people are treated for hyperadrenergic symptoms without blood test confirmation. I think that the hyper group often feel better on beta-blockers and or benzodiazepines to calm the body down. It sounds like you need to find an understanding doctor who is willing to work through this with you. Medication for all types of dysautonomia is rather hit-and-miss, what works for one person makes another feel awful. Mostly you just need to follow a trial-and-error approach until you find the best medication combination for you. You can actually go to any doc for dysautonomia problems. Some of the big centres are hot on testing / research but not really interested in follow up and getting meds sorted. Often a good PCP or internal med doctor can become your dysautonomia doctor - they needn't have even heard of dysautonomia if they are willing to learn with you. If you haven't already looked then check the DINET physician's list to see if there are any doctors near to you. Another useful tool is the recently released DINET documentary "Changes: living with postural orthostatic tachycardia syndrome". If you find an understanding doctor, they could learn a lot from watching the DVD. Good luck on your journey, Flop

Julie - thank you for the compliment! There is a good explanation of the different bits of the nervous system in Dr Grubb's book "The fainting phenomenon". Pity my bit isn't really relevant to that dysautonomia page, I'm not sure what should be changed but maybe one day I'll register to edit - (hopefully firewatcher will get there first??). On a more positive note the wikipedia article on POTS seems to be much more balanced! Flop

The problem with a lot of psychiatric medications is that they take a long time to get to full benefit. For example most SSRIs take 6-8 weeks to know if they are going to help with depression or not so the doctor needs you to last that long before deciding that they don't work for you. Also many psychiatric drugs have temporary side effects that settle if you persist in taking them - I know my initial experience with Paroxetine (Paxil) was horrible but I persevered and the weird side-effects went away. However you have 2 issues - physical as well as psychiatric needs. When you do to see the psych I would make a list of all your symptoms (physical and psych). Next to each symptom write how it has changed since starting the Remeron eg: worse, improved, no change, gone away, new symptom.... The one week wait between trying different drugs is not the psych being a nuisance, it is to let the drug out of your body before introducing a new one. This is quite usual with psych meds and is to prevent cross-reactions between the old and new meds. My sister has recently changed from a tricyclic antidepressant to an SSRI and had to have a 2 week gap between the meds. I hope you manage to have a proper discussion with your psych and get them to understand why you think the remeron is the wrong med for you. Flop

Perhaps the wikipeadia article needs to clarify what bits of the nervous system is is talking about - it confused me by talking about dysautonomia and central nervous system! The body's nervous system is divided into the central (CNS) and peripheral nervous system by simple geographical location. The CNS is basically the brain and the spinal chord. The peripheral NS is everything outside the brain/spinal chord. The autonomic nervous system (ANS) is what controls the "automatic" (subconscious) functions of the body (eg heart rate, BP, breathing, temperature control, sweating, digestion - you see where our symptoms come from???). The ANS is part of the peripheral NS (not the CNS). The ANS is divided into 2 sections that control opposite reactions, they should work together in balance. These are the sympathetic and parasympathetic nervous systems. Essentially if one controls the function to speed up the heart rate, the other controls the function to slow down the heart rate. The sympathetic NS controls our "fight or flight" mechanism whereas the parasympathetic NS controls our resting function. When the two work in harmony / balance you don't notice your body automatically adapting to the situation it is in. When the balance is lost you get the symptoms of dysautonomia - literally the ANS is dysfunctional, hey presto welcome to our lives! Flop

In the UK it is mainly given to people with anaemia from chronic renal failure. Natural EPO production is controlled by the kidneys so when they go wrong you can get severe anaemia. Some people used to have to have weekly blood transfusions to keep their anaemia at a tolerable level - now they get EPO injections instead. Anything that makes the blood thicker will increase the risk of stroke. Epo increases the number of red blood cells produced to makes the blood thicker as well as raising blood pressure and increasing the amount of oxygen that can be carried by the blood. Potentially a very useful drug for POTS but needs some proper research and prescribing guides. Flop

I wish I didn't have to go upstairs to use the bathroom - if I had the money I would add a downstairs shower-room to my house (dream of having a spacious wetroom with an open shower). My previous flat had hard floors so I bought a load of foam square jigsaw pieces (kids floor coverings, but they also do them for gyms etc) - that way if I did faint at least my head was slightly cushioned from the floor. Stairs - have a "stair basket" at each end to put in all the things that need taking up or down stairs. Then if you have housemates / family they can take stuff up/down for you, otherwise just do one trip yourself not up and down all the time. (However don't use this for heavy items - get someone else to carry them if you can). Bedroom supplies - under my bedside table I have a 2 litre bottle of water, a bottle of blackcurrant squash, and a stash of salty snacks. I can refill my water glass during the night without getting up. Also handy for when I feel dizzy and have to go lie down, then realise that I am hungry or short of salt - no need to go down to the kitchen when I am wobbly. If you are a hot drinks person then either a good vacuum flask or a travel kettle in your bedroom are a good idea. Flop

That prognosis bit is much more about Parkinson's / MSA / PAF - they do have CNS degeneration. Whereas most people with POTS have autonomic nervous system dysfunction not degenaration (but some do have small fiber neuropathy), and do not have problems with the central nervous system at all. I agree that this bit is misleading. I think the comments fit with Parkinson's and other CNS problems as a cause of dysautonomia. There should be a bit that says about EDS related dysautonomia tending to be a chronic problem that can vary is symptoms - it is life altering not life threatening! Flop

With growth of hands and feet, facial pain and high growth hormone it sounds like Acromegaly might be what your endo is considering. A neighbour had acromegaly and was sucessfully treated with pituitary surgery (via the nose) and then some replacement hormones. I suspect you need to have a good discussion with your endo and get them to come up with a diagnosis and management plan. Flop