Practical information

Tips from an experienced patient

Vince Nicholas is a member of the UK Amyloidosis Advisory Group and was diagnosed with hereditary ATTR (hATTR) amyloidosis, over 20 years ago.

Here are some tips from Vince for dealing with common symptoms:

Practical information

Tips from an experienced patient

Vince Nicholas is a member of the UK Amyloidosis Advisory Group and was diagnosed with hereditary ATTR (hATTR) amyloidosis, over 20 years ago.

Here are some tips from Vince for dealing with common symptoms:

Dealing with postural hypotension

This is when your blood pressure drops after sitting or lying down, which can lead to dizziness, light-headiness, fainting and possible falls

  1. After sitting down for more than 1/2 hour always stand for about 30 seconds before moving off.
  2. If feeling lightheaded or if you have ringing in your ears when walking, stand still for a few moments until it passes. Sometimes you can walk through it after some practice!
  3. If it gets really bad, always ask for help or sit down. I find it in some cases good to hold onto my wife’s arm when walking distances.
  4. I find that when I get a cold or virus the postural hypotension can get worse. I find it helps by taking the standard doses of paracetamol.
  5. When getting up from bed in the morning I always sit on the side for a few moments before walking off.
  6. Never run and always pace yourself.
  7. Always allow more time than you think you need!

Dealing with postural hypotension

This is when your blood pressure drops after sitting or lying down, which can lead to dizziness, light-headiness, fainting and possible falls

  1. After sitting down for more than 1/2 hour always stand for about 30 seconds before moving off.
  2. If feeling lightheaded or if you have ringing in your ears when walking, stand still for a few moments until it passes. Sometimes you can walk through it after some practice!
  3. If it gets really bad, always ask for help or sit down. I find it in some cases good to hold onto my wife’s arm when walking distances.
  4. I find that when I get a cold or virus the postural hypotension can get worse. I find it helps by taking the standard doses of paracetamol.
  5. When getting up from bed in the morning I always sit on the side for a few moments before walking off.
  6. Never run and always pace yourself.
  7. Always allow more time than you think you need!

Dealing with painful neuropathy symptoms

  1. I find doing weekly muscle build-up and light exercise at the gym helps a lot.
  2. I find having regular leg and feet massage eases my leg pains and stiffness.
  3. Always keep your legs and feet moisturised.
  4. Carry out daily hand exercise to keep them working.

Diet

Over the last 6 years since having my liver transplant I have found that by adjusting my diet, my bowel problems have reduced:

  1. Reducing the amount of wheat has helped a lot. I very rarely eat sandwiches, cakes and eat very little pastry.
  2. I try not to have processed foods and have cooked food at lunchtime and in the evenings.
  3. I have cut out sugar as much as I can. (Chocolate seems to still be good!!!)
  4. I have cut out all beer and lager and tend to drink water, wine and some spirits.
  5. I restrict to only having mild curries.

Dealing with painful neuropathy symptoms

  1. I find doing weekly muscle build-up and light exercise at the gym helps a lot.
  2. I find having regular leg and feet massage eases my leg pains and stiffness.
  3. Always keep your legs and feet moisturised.
  4. Carry out daily hand exercise to keep them working.

Diet

Over the last 6 years since having my liver transplant I have found that by adjusting my diet, my bowel problems have reduced:

  1. Reducing the amount of wheat has helped a lot. I very rarely eat sandwiches, cakes and eat very little pastry.
  2. I try not to have processed foods and have cooked food at lunchtime and in the evenings.
  3. I have cut out sugar as much as I can. (Chocolate seems to still be good!!!)
  4. I have cut out all beer and lager and tend to drink water, wine and some spirits.
  5. I restrict to only having mild curries.