This Mg journey is akin to my original AF journey with many parallels but the difference is I am now much better practised at managing my consultations. 2 hospital appointments this week, had 3 hours of testing at the eye unit and yesterday another CT scan. The one difference is the amount of screening, I go for monthly screens for my eyes, which I am pleased to say have improved since starting a drug called Pyrimidstigmine which helps with symptoms, but is not a treatment, I now have a clear, written down, treatment plan and apart and fell well supported for the physical symptoms, but as ever, no help for the psychological impact.
Yesterday was a good day, after the scan shopped, came home and did 2 hours gardening, cooked and then even went to my choir but about half time my voice completely disappeared and started to feel like a limp lettuce leaf. Haven't managed to do anything other than sleep today so still not got the hang of pacing myself.
Good news is still no AF but am having a few runs of tachycardia and palpitations when I am tired, they are too short to capture on Alivecor unfortunately. I have transferred to a local EP, who used to be the registrar of dr who performed my ablation, and I am due to see him in October because he works in the same hospital as my neuro so will be much easier to confer.
Very similar issues emerge on the Mg blogs as here, triggers, nutrition, exercise but add on weather as Mg sufferers are known as Snowfkakes because heat is a trigger for a flare up but so is extreme weather of any kind. That makes life a little difficult as my Darlin' man wants to go back to the Caribbean in the winter and skiing in France! "Do I go or do I stay?" seems to be my song of the moment,
Nutrition is a very similar issue as on here with some insisting they have eliminated all their symptoms through diet and others relying solely on meds. Magnesium supplements are the biggest contended issue, many neuros say absolutely no, whilst others say yes, very good for the memory. Mine is ok with me continuing if I think it's helping the heart, which I do,
Exercise is a different issue altogether because unless in remission, I know I will have a payback if I exercise at best, and a crisis at worst. Crisis=muscles just stop working altogether and i don't want to fall down in the street again, thankfully hasn't happened since I have been on the Pyrid. But I do get ridiculously tired and need 12 hours sleep + a nap in the afternoon, so to say it is life limiting is an understatement.
I have found a Mg Facebook forum which seems so much friendlier than the UK support forum, who frankly I found to be a weird lot who squabble and frighten people away with what I could only describe as bullying to anyone who doesn't say 'thank you' to each individual post. I have been told by several people they are not going to answer my questions because I said up front that although I really appreciate any response, I am not always going to reply to every person on a long thread.
Oh I love you guys, you are so normal!
The thing I am struggling with now is that I know I am beginning to become depressed and as a therapist, know what I should do, but just haven't the energy to do it. By strategy of playing the thankful game is wearing a bit thin as I sit home alone whilst hubby has gone sailing, my choice not to go, I felt too tired and too frightened of getting too hot in open boat on very sunny, sultry day here in Devon's south coast.
Have no questions and not expecting any replies, just helps to blog so if you did manage to stay with me, thanks for listening. Hope you guys are able to enjoy this wonderful sunshine, me I'll stay indoors and have a short walk this evening.
Best wishes everyone....