Dizziness, and my second appointment with the ME nurse

Today I had my second appointment with Keith, the ME nurse. He is the only ME specialist in Scotland, so I am very grateful to be treated by him. 

My health has been hit and miss recently, I have been having a lot of dizziness with no obvious cause. I usually have it as part of a migraine, but this isn't the case at the moment. It seems to occur when I go from laying down or sitting into a standing position. Sometimes it's instantaneous, other times it can be delayed by about five minutes. This was one of the things I wanted to speak to Keith about today.

He had several questions about symptoms to go through first; he asked me about muscle spasms and jerking, if I have any pain and if I have any food or smell sensitivities or intolerances, along with some other questions. 

We got to a part about dizziness and nausea, so I told him about what has been happening and it currently being a very prominent symptom. I have been keeping an eye on my heart rate when it happens as there is a condition known as PoTS (postural orthostatic tachycardia syndrome) that is quite a common comorbidity of illnesses like ME which causes dizziness when standing, along with an increase in heart rate. My dizziness doesn't generally come with an increase, but it happens occasionally. It's not dizziness as such, as the room or my head don't feel like they're spinning, it's more that it feels like the world is tilting to the left at an angle, kind of as if you're on a ship and it leans in one direction due to strong waves. Keith believes it could be something like benign paroxysmal positional vertigo (BPPV). 

He gave me some instructions of something to try when I go to get out of/off of the bed. He told me to sit on the edge of the bed with my feet on the ground, then you lean your torso to either the left or right, and lower it so that you are almost laying on your side. You then pause for a minute or two, and repeat it on the other side. I should try this for a few minutes, and then get off the bed and see if it makes a difference. He said that this could be a way of telling my brain which way is the usual way up, so vertically. I am also seeing my GP on Monday, and I mentioned the dizziness at our last appointment, so I will discuss it further and see what her opinion is. 

I have been struggling to manage the dizziness and I have been having to spend a lot of time in, or on, the bed, and with summer not far away, I want to overcome this as soon as possible so that I can be enjoying the warmer weather. I am hoping that the exercises, and any advice or treatment from my GP will give me a bit more quality of life back. 

He also suggested that I take a Vitamin D and Calcium supplement as a lot of the population are low on these, particularly here in Scotland, but as I said, I want to be out in the sun as much as possible again this year. 

It was a productive and helpful appointment. Keith is very approachable and friendly, and knowing he understands my illness and the problems I have is refreshing. He doesn't make you feel like you are being judged, and he believes you. My appointment was an hour and twenty minutes in the end, so I have been pretty worn out since, but I left feeling positive and listened to, and with a bit more knowledge. 

Thanks for reading. 

That ME Girl