flop

I have good days where I can manage a lot - about 2 weeks ago I hoovered the whole house in one go. But it probably won't get done again for weeks.

Mostly I try to keep things clean - wiping up spills in the kitchen immediately, spraying shower cleaner right after my shower. Washing the dishes is really tough for me so I delegate that task to my sister (she lives with me) (I can't wait until I can have a dishwasher again). Laundry I do in batches. I will empty the wet laundry into a bucket and push it into the livingroom then sit on the floor whilst hanging socks etc on the drying rack. I only iron absolute essentials and try to buy clothes that don't need ironing.

Flop

Domperidone (motilium) is fully approved for use in the UK. I have had it many times from my doctor (both before and after my POTS diagnosis). Most of the time my GI tract moves far too quickly so I don't often need this sort of med but I would take it without any concerns.

Flop

If your tiredness is due to bradycardia then a pacemaker may help. Most people with POTS wouldn't benefit from pacing but those with frequent bradycardia may do.

It is worth knowing that there now is one pacemaker that is compatible with MRI scanning - a teen in the UK was in the national papers a few months ago as being the first Briton to have this new type of pacemaker. You might have to argue for insurance coverage for anything so new / fancy but your other diagnoses may mean that you are more likely to need MRIs in the future???

Whilst pacers are pretty much a permanent decision, unlike an ablation that can't be undone, it is possible to have a pacemaker switched off or even removed if it really does make your symptoms worse.

Talk to several doctors and get advice before making your decision,

Flop

Hi Lina,

it's great to hear that you are seeing improvement in your symptoms - keep it up

Flop

Most people with POTS feel worse in the heat. It is because heat causes the blood vessels to dilate and bring blood to the skin to help with cooling the body. Unfortunately we need our blood to be in our heads not our skin so it makes us feel worse.

Taking even more salt and water than usual and trying to keep cool should help.

Flop

I'd back the suggestion to let a doctor make the call on fitting the criteria or not - it can be very hard to judge yourself on knees and elbows. My official diagnosis letter for Hypermobile EDS says ....Beighton score of 3/9 (historically 7/9)....

For example I could put my thumbs flat against my forearms for years, but repeated tendonitis in the wrists and then wrist fractures mean that I can't get them anywhere near touching now.

Flop

I take Paroxetine 20mg (Paxil / Seroxat) for my POTS but was having an awful time with insomnia. 5-HTP was suggested by a friend. I had to check with my pharmacist and doctor as you shouldn't take two meds that elevate serotonin without advice but they said as I was on a low dose of SSRI that a low dose of 5-HTP should be fine. I take 50mg each evening.

My Mum has ongoing depression (she's worried about me and my health) and has found that taking 5-HTP has helped her enough that she hasn't needed prescription antidepressants. She takes 50-100mg each night.

Flop

Here's a link to a mast cell disorders forum. Mack's Mom kindly sent me the link a while back. I don't post there but have read through some of the posts. Hope it helps answer some of your questions:

http://mastcelldisorders.lefora.com

Flop

Simmy,

I would have thought that rates persistently in the low 40s would be too low, but everyone is different. What does your doctor think about your sleeping heart rates? In some people a pacemaker will allow them to tolerate meds to control their postural tachycardia but pacers are certainly not the first option - maybe you would benefit from seeing one of the very experienced POTS physicians.

Flop

The diagnosis between autonomic dysfunction, anxiety and OCD type problems can be difficult. Many of the symptoms of anxiety and psychological distress are displayed by the autonomic nervous system - so is it anxiety causing symptoms, or ANS problems that mimic anxiety????

Personally I think that many of us have ANS dysfunction and a heightened awareness of ANS symptoms and symptoms in response to psychological stimuli - and each influences the other.

Flop

I got a wheelchair in 2007 in order to stay in work (it bought me an extra 18 months of working life). My cardiologist was furious with me and shouted at me. I thought he was being deliberately obstructive but he was actually just really really worried that I would get dependant on the chair and be unable to stand, then unable to sit and end up in a nursing home stuck in bed for the rest of my life. I was really disciplined with the chair - I had to use it at work (it was a condition of my occupational health assessment that I had to use the chair to prevent me fainting) but I kept it at work so that I wouldn't be tempted to use it at other times.

When I stopped working I pretty much stopped using the chair (but also really reduced the amount that I went out). Since then I have used it for things like going to large shopping complexes (mall) that I simply couldn't contemplate doing without the chair.

If you mainly want to use a chair for getting out can you borrow or rent one for specific trips? In the UK you can hire wheelchairs for a few weeks from organisations like the British Red Cross. Many towns have "shopmobility" services that hire motorised scooters and manual wheelchairs for the day to enable people to go shopping.

Flop

My worst pulse pressure was 96/90 durring a TTT. My cardiologist commented that at that pressure there is virtually no forward blood flow so no wonder I felt so awful.

All the usual POTS tricks can help with this (fluid, salt, compression, counter-manouvers, lying down).

Flop

Hi, beta-blocker vs calcium channel blocker is a good question.

They are both mainly used to treat high BP, but they both work by slowing down the HR.

The physiology looks complicated but it is actually a fairly simple equation

Cardiac output (liters/minute) = heart rate (beats/minute) x stroke volume (litres/heart beat)

Basically when our hearts beat really fast the heart chambers don't have time to get full between beats. This means that the amount of blood pumped out of the heart (stroke volume) is low. By slowing down the tachycardia the heart can fill properly so each beat pumps more blood. This means that over-all the heart becomes more efficient and cardiac output is increased (ie better blood flow to our brains and generally higher BP).

In people with a normal heart rate but high BP (the majority of people prescribed these meds), slowing the heart rate from normal to low-normal doesn't change the stroke volume so the overall effect is to reduce cardiac output (ie reduce BP).

It is because of the inter-relationship between heart rate and stroke volume that these meds can have such different effects on different conditions. Many doctors don't realise how meds will have different effects on people with POTS. That is not to say that a BB or CCB won't cause low BP in people with POTs but many of us find them very helpful medications.

I've got to dash now but will try to remember to come back and write more later....

Flop

Julie, I didn't mean that anaphylaxis would have all of the features that I listed - just that having one or more of those symptoms should prompt people to consider anaphylaxis.

I know what you mean about doctors not understanding atypical presentations of things. I remember having a horrific asthma attack and going by ambulance to A&E (ER). My asthma is mostly coughing, I don't wheeze even when my peak-flow is really low. The dr said I have over-dosed myself on my salbutamol inhaler (had also had 3 nebs in the ambulance) and didn't take any notice of the fact that my peak-flow was way below 50% of my normal. Luckily I saw a more clued-up doctor later that day who put me on the prednisolone that I needed to treat the flare up!

Flop

Hi Angela,

a pulled muscle between the ribs is the most common cause for pain when breathing in. It would offten be caused by coughing or heavy lifting. Those muscles are only usd for breathing so movement wouldn't trigger the same pain.

What sounds different in your story is the rash, pulled muscles shouldn't cause a rash and unless you made the area red by rubbing it a lot? I thing you said you spoke to your doc on the phone? Sounds like calling them again and getting somone to take a look at the rash would be a good idea. Maybe get your husband to rake a photo of the rash.

Hope you are feeling better soon,

Flop

Hugs Simmy, what a horrible experience.

Your symptoms all sound to me like they are due to lack of bloodflow. When body tissues become hypoxic (lack of oxygen usually due to lack of adequate blood flow) they send out "distress signals". These signals are often abnormal sensations that you can learn to identify as warning symptoms. Sometimes you get distress signals for only a second or two before fainting, other times you can have the signals for quite a long time and maybe not actually faint.

Some classic "distress signals" are:

eyes - vision going black & white, visual fields closing in (like a tunnel), spots, flashing lights, blurred vision, curtain coming down.

Ears - muffled hearing, voices seem distant, going deaf, ringing noises, buzzing noises.

Muscles/skin - heaviness, numbness, tingling, unable to move.

Other symptoms that can happen before a faint are due to the surge of activity in the autonomic nervous system:

tachycardia, bradycardia, palpitations, feeling hot, flushing, going pale, sweating, nausea, and many more.

Re ear buzzing and anaphylaxis. The full name for a life-threatening allergic reaction is "anaphylactic shock". The medical use of "shock" means lack of oxygen to the brain, usually due to low blood pressure. In anaphylaxis the histamine released into the body causes the blood vessels to dilate and fluid to leak into tissues - this causes a big drop in BP and if untreated can lead to unconsciousness.

Because both POTS and anaphylactic shock cause low BP they both cause a lot of the same "distress signals". Often the clues pointing towards anaphylaxis would include: contact will an allergen, difficulty breathing, wheezing, coughing, heaviness in chest, hives, swelling. If you think someone might be having an anaphylactic reaction you should get emergency medical help.

Flop

I took a high dose of fludrocortisone (300 micrograms daily) for several years. During that time I had several vaccinations with no particular problems (just the usual sore arm, temperature etc that everyone else had).

I have also spent time on moderate doses of prednisolone so I know a fair bit about corticosteroids. My doctor and pharmacist both say that fludrocortisone is taken in such small doses that it doesn't really have the effects that are written about in the steroid warning leaflets.

There are 5 different types of steroid hormones - glucocorticoids, mineralocorticoids, androgens, oestrogens and progestagens. They have very different mechanisms of action on the body. Fludrocortisone is a mineralocorticoid. Prednisolone is a glucocorticoid.

Mineralocorticoids (e.g. Florinef) are similar to the naturally occuring aldosterone in the body and work by increasing sodium and fluid reabsorption in the kidney.

Glucocorticoids (e.g. Prednisone) are involved in the regulation of glucose levels and in providing feedback to the immune system - high levels of glucocorticoids reduce the activity of the immune system and so reduce inflammation.

Always discuss your medications and vaccinations with your doctor but usually taking florinef should not be a reason to avoid vaccination.

Flop

My POTS team consists of:

Neurovascular medicine (leader)

Cardiologist (made the diagnosis, and initial treatment then referred to neurovascular)

General Practitioner

I also see / have seen:

Uro-gynaecologist

Immunologist

Gastroenterologist (first appointment next week)

ENT Surgeon

Electrophysiology Cardiologist (discharged)

Rheumatologist (discharged)

Gynaecologist (discharged)

Othopaedic surgeon (discharged)

Dermatologist (discharged)

Like Nina - I think I am the real leader of my team. My poor GP ends up seeing me regularly and I see members of my cardio and neuro teams every 6 months.

Flop

Sorry for my misleading post - memory failure!!

Flop

I haven't done any research into this myself and always went with the "we don't know why SSRIs help but they do" line. In the DINET documentary one of the doctors talks about SSRIs and he mentions that serotonin spikes cause autonomic symptoms, he says that by using SSRIs to elevate but level-out serotonin levels, apparently this gets rid of the symptoms associated with serotonin spikes.

Flop

As you had itching and breathing issues it does sound like it could be an allergy or histamine related episode (have you read the many threads about MCAD - Mack's Mom has posted lots of info). If histamine is the cause then an anti-histamine medication should help the symptoms. One of the newer non-sedating antihistamines like cetirizine might be best so that you don't get drowsy at work. It might be worth taking one prophylactically before your shift?

Flop

I used to enjoy drinking alcohol a couple of times a week but hardly ever drink now. Alcohol is a diuretic so if you do have a drink you need to drink even more water to help compensate. For me I can balance a glass of wine with a pint of water.

Flop

Sue, people with Wilson's disease have very high copper levels so if your levels were previously low and your eyes are normal you don't need to worry about Wilson's disease.

Flop

I'm constantly moving, jiggling my leg, changing positions - my Mum won't sit on the sofa with me anymore as she complains that I make her feel sea-sick! I didn't realise it was a POTS thing until I met the autonomic specialist nurse in London a few years ago - she pointed out that I had fidgeted and wriggled throughout our long conversation. She said it was helpful and not to try to suppress the movements.

Flop

"This is a pleasant, HEALTHY appearing 28 year old woman IN NO APPARENT DISTRESS but with a resting heart rate of 170...."

Angela - actually what the doctor is saying is that you:

a ) you look well, but are not well

b ) you are not anxious (ie your tachy is physical not psychological)

c ) you have a very abnormal resting heart rate

I would interpret that statement as validating your illness.

OK the future disability is a hoot - he could make a fortune as a psychic medium!!!

Flop