• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

New M.E/cfs diagnosis

Messages
7
You might like to research Ivabradine. It is available in the UK. I had a cardiologist suggest propranolol or ivabradine for my POTS which followed my ME and is probably viral in origin. I had a horrible reaction to propranolol as it lowers blood pressure. I couldn't stay awake and felt awful.

So eventually I asked for the ivabradine. It was immediately life changing. I take half a 5mg tablet. This costs the NHS around ten pounds. I have to pay for prescriptions so it costs the NHS very little. It is usually prescribed at higher doses for angina etc so a GP may initially take fright at the apparent cost.however this tiny dose is all that is needed to make a difference.

It seems to slow the heart just enough to allow the ventricles to fill more effectively and so more oxygen goes to the brain and body. In addition the slight reduction in heart rate takes me slightly below my aerobic threshold for more of the day. That means I am more comfortable upright and over the last couple of years on ivabradine I am slowly increasing my fitness, muscle tone and that in itself helps blood return to the heart.

Before ivabradine I used a tablet of butchers broom, horse chestnut and vine leaf from Amazon.it was helpful but the ivabradine works so much better. Drinking a bolus of water, to increase blood volume,especially in the morning, and increasing salt intake etc are all important still. I am not cured sadly, but have a Much better quality of life. Good luck.
 

Hip

Senior Member
Messages
17,870
Turns out the vitamins for the protocol are too expensive and i cant follow this protocol due to lack of funds

One of the cheapest places to buy vitamins in Europe is www.healthmonthly.co.uk . I am not sure if that helps make things more affordable.

The two most basic things you need for the methylation protocol are: a sublingual vitamin B12 methylcobalamin (or B12 hydroxocobalamin) tablet, such as this one for £8 (two month's supply), and L-methylfolate supplement, such as this one for £8 (3 month's supply).
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
i love the idea of a shower stool sometimes i have to shower sitting down on the shower tray.i will purchase a heart monitor or a cheap fitbit or something when i have saved enough.Awesome idea and thank you for the great advice.ill set timers and alarms which is an fantastic idea as i have a lot of brain fog and ill forget to do stuff.I normally drink a lot of soda a week but i probably should switch to water i drink a lot of tea as well,pots and pots of it in fact :)i ordered a lot of frozen food this week which is easy to make and doesnt take any effort as you said :)

You are right about the grief stage.I am resentful of others for having so much energy and are able to do stuff i cant.But i have to accept what i have and realise my limits.Thank you for your help and support purrsian the post wasnt too long for me i found it extremely helpful.
Ill have look for that stool on amazon thanks for the link :)

Electrolites(like Gastrolyte) really help too