Lucy

I was an active 47-year-old mother of three teenagers, working as a university professor and playing regular competitive tennis when I fell ill with pneumonia in February 2013.  This was when the dizziness and collapsing began, and although it was worrying, I thought the collapsing was part of having pneumonia and the dizziness was an infection of the inner ear called labyrinthitis.  After four days in the hospital with oxygen and intravenous antibiotics, I was sent home to recover.

This took ages: I had four months off work; needed constant care; and was unable to do anything around the house.  When I finally resumed short working days, all of my energy went into the day, and I needed to lie on the sofa all evening.  However, at least the collapsing had stopped and the dizziness and balance problems had reduced. 

Episodes lasted about 30-60 minutes

On resuming a somewhat more active working life after the summer, the collapsing struck again, and began to happen as many as eight times a week. These episodes lasted about 30-60 minutes and involved intense dizziness and nausea, palpitations, shortness of breath, paralysis of my legs, a feeling of hardly being able to hold my head up, cold extremities, pallor, and a hot and sweaty body. Often, bad bouts of collapsing were associated with neck/back pain and soreness.  I could barely speak and had to immediately ease myself to the floor with my arms when the collapses happened. Even on days when I was not collapsing, there were many occasions when I was unable to leave the house because I simply could not walk.  I felt particularly terrible in the mornings (dizzy, weak, nauseous, short of breath, headache), but things would often ease later on.  After an emergency hospital admission in late November, I was relieved when PoTS was suggested by a specialist, and I embarked on further tests.

Uncontrollable shaking and convulsions

By Christmas, however, I was hardly able to function. I felt that every ounce of life was draining out of me.  My husband was carrying me around the house and my children were bathing me.  Worryingly the collapses had taken on a more sinister note and included uncontrollable shaking and convulsions. At this point, very early in 2014, I saw an endocrinologist who witnessed a full collapse (in his waiting room), and after another emergency hospital admission, said he suspected hyperinsulinemia (which may exacerbate PoTS). He immediately put me on a very low carbohydrate diet.  I was by now bedridden, weak and exhausted, but on following the diet, the collapsing largely stopped. Shortly afterward, a neurologist agreed that I had PoTS, or something very like it, and suggested graded exercise.

It is taking me a long time to recover, and I still have plenty of bad days with occasional collapses, but I am making progress. It is slow, emotionally painful, and often disheartening, but I want to share what I have done because it may help others.  I am a scientist and cannot help measuring and recording things, and my doctors probably think I am obsessional, but it is my way of coping!

My daily plan

Here is my daily plan, which includes advice taken from the PoTS UK website, medical advice I have received, and a few ideas of my own:

1. Drink at least 2/3 of a litre of water on waking in the morning (and as much as possible throughout the day)
2. Lie in bed for at least 30 minutes after drinking the water and before rising, and only get up very slowly
3. Put compression socks on before getting out of bed (sometimes I wear tights but they are more annoying – Sigvaris brand knee highs are very comfortable and look good). Wear them all day until bedtime
4. Eat five small meals a day, following a strict, low carb diet. I started with 20 grams net carbs and worked up to 50 grams (I followed the New Atkins diet on medical advice, and used the iPad app to measure and record literally everything)
5. Take supplements including multivitamins, L-Carnatine, CoQ10, omega3 fish oil, vitamin D (but take advice!)
6. Try medication on medical advice.  I use midodrine 5mg three times a day
7. Measure daily steps with a pedometer. This means that I know how many steps I can manage. I am up from practically no steps to around 2000 per day, but this drops when I have a bad day, and increases (2500) on a good day.  I am careful not to go much above my top level all at once or I pay the next day.
8. Do graded exercise with the body supported (e.g., cycling, swimming, rowing).  I have a fixed bike and started with just 5 minutes, but, over four months, have moved up to 23 minutes. I do three days on, one day (or two if I need it) off. I increase only very slowly.  I often become disheartened if I overdo it, but I tell myself that cycling is ‘my ticket out of here’ and get back on the bike the next day or the day after.
9. Use a wheelchair.  I hate this but at present I have no choice if I want to get out of the house.  I have enjoyed trips to galleries and parks this way and am even starting to try a few short working days with a motorised wheelchair to get around my University.
10. I bought a bar stool for the kitchen to allow sitting down at counter top height while cooking, washing up, etc.
11. Sit down on the floor when brushing teeth, unloading the dishwasher/shopping (I use a shopping delivery service), hanging up washing. Basically sit down as much as possible whilst remaining active
12. Have lukewarm baths not showers and sit on the floor to towel off; use baby wipes if pressed for time
13. Beware of hot weather, catching/fighting off bugs, and periods (for women).  All of these factors can make everything worse very quickly
14. Never rush!  Avoid stress and things that are surprising/jolting
15. Plan everything ahead in terms of medication, drinks, meals, loos, walking required, stamina needed
16. Go to bed very early, even if just to read a book quietly
17. Do yoga, gentle stretching and strength exercises while sitting or lying down
18. Learn to say no to things that are beyond stamina limits
19. Find joy in simple things like garden birds, plants, and the kindness of family and friends
20. Wear colourful clothes to lift the mood (this was my youngest daughter’s idea)