I went to the hospital today to see the POTS specialist. It was a good appointment, i felt my brain was working enough to get my head around what she was saying and also enough to be articulate, which helps.
I currently take midodrine twice a day, morning and lunchtime, at a low dose 2.5mg each time. I did double this dose for three weeks before, which caused all sorts of side effects and i felt awful so i contacted her (the specialist) and she said to go back to the original dose.
The plan now is to take an extra dose at tea time, as i told her i have a low point at about 4-5pm most days, so she thinks it is reasonable to try and see if another dose helps this slump. After trying this for a couple of weeks she wants me to try to take the odd extra dose in between, at times where i feel i need it, and see if this helps and how much i can tolerate.
I am keen to give it another try to up the dosage, as it has worked really well for me on the lower dose, and there are obviously still symptoms of it affecting me. Many of my worst symptoms have improved and life IS better, particularly “at rest” (in ways i have explained in previous posts so i will not repeat myself – now i have “tag cloud” in my left hand column you can click on “POTS” and read all about it!!).
I am to contact her if things are not going well with this plan or i need to check anything, otherwise i will see her in three months time and she says she will give me something else to try on top of the midodrine to try to improve things even more… which would be nice!
It was good to feel that she still thinks that improvements can be made and that much of my illness/symptoms could be still attributed to POTS and related autonomic malfunctions, despite the initial improvements of specific symptoms. She emphasised that we are at the start of a very slow journey of improvement and seems to think we will get somewhere with it eventually. I really hope so!
I even got a new diagnosis out of the appointment today! I have… drum roll… Defecation Syncopy! Say it loud and proud! This information from the Student British Medical Journal mentions it, as well as other forms of syncope, which is quite interesting. I am not sure exactly whether POTS falls into the Vasovagal Syncope or the Postural Hypotension groups, or is a mixture, as both descriptions sound relevant to me… the defecation syncope seems to fall into the vasovagal group, and is obviously related to my existing problems.
I do not actually pass out, but i feel extra faint and dizzy and weak just before and when i have a bowel movement, and often go back to bed to recover. As my IBS has been getting worse, this has been affecting me more, although this has been happening for a long time, I did not think much about it. It just occurred to me that it may be relevant when i was asked if i get more symptoms after eating a meal (or other specific times), and i thought that no, it happens further down the line than that, so i thought i would mention it!
The Specialist said that she is a world leading expert on defecation syncopy! (she said this as if it was amusing, not in a “I am so clever” way, she is not like that at all) and that no-one knows how common it is as no-one speaks about it (except me evidently!). She said that tests have been done where they insert a bag up people’s bowels, and inflate it, and they just pass out!! She did not test me today 😉 She said that some people need cushions around the toilet and on the bath/sink edges near the toilet as they pass out and don’t want to crack their heads open on the way down… glad that it is not that extreme in me.
So the plan for this is to take another dose of midodrine when i get these symtoms (or feel the need!) and see if it helps…
She also gave me an interesting info sheet on IBS and diet, which included things about “Resistant Starches” which i had not heard of… basically it is a type of fibre that is not broken down in the small intestine, but ferments in the large intestine, causing wind, discomfort etc. It is good for people in general, but maybe not so good if you are having trouble digesting. The leaflet also lists dietary changes for each main symptom, rather than all IBS in general, so i think i may try to make some changes and see if it helps. I will write more about this in a separate post when i get chance later and have looked into it more.
All this means that my D-Ribose three week trial may be hard to do, as if i start taking more Midodrine and change my diet a bit i may not be able to tell what impact the D-ribose is or isn’t having. Ahh well. I should have planned the timing better but that’s where being spontaneous gets you! I will do it anyway and see…