thank you for this thread. I have read the different user experiences on TIMS with valve issues (Erika, LR1234, Rici) and I realise searching for answers on how to treat valve issues is less 'looking for a needle in a haystack' and more 'do I need a needle, and will it be what I'm looking for if I do find it'
I had a Doppler scan done, it showed a diminished flow in the left Internal Jugular Vein (IJV), with an immobile valve at the IJV-innominate junction. Increased right IJV flow. I have not yet had any CCSVI treatment.
I have 2 questions.
I feel much better when I use Niacin occasionally to achieve a 'flush'. I have read that this lowers blood pressure. I seem to have lower blood pressure normally but I am wondering could this be a possible positive adaptation by my body to reduce blood flow through the faulty IJV valve, therby reducing in turn the volume of refluxed blood into the brain? Also, presuming I ever developed high blood pressure, the potential for problems would surely increase if I have an immobile IJV-valve?
I was pregnant in 2007/2008 and I experienced problems with losing consciousness within 30 minutes of staying sitting down - I would get to the point of fainting. It would only be resolved by standing and walking around. My obstetriican could not find any reason for it but did say 1/1000 pregnant women seemed to get this. I found it an interesting epidemiological statistic given MS's 1/1000 prevalence (although this obviously includes the boys!). Could this passing out while seated, during pregnancy, have been related to an immobile IJV-valve? I ask in order to see if this can strengthen the case for seeing a vein-specialist.
Many thanks in advance for your thoughts.
I am also very interested to hear from any others considering or having undergone CCSVI who have a valve problem in their IJV - I know of Erika, LR1234 & Rici, but maybe there are others out there............