Systole/diastole Differences..midodrine!

[s-pot]

Hey all!

Im still relying on Midodrine to try to control symptoms until I see a specialist in May, ive not had much luck with this. Ive never been able to increase my dose past 2.5tds cos of extreme migraine headaches and what i call Midodrine 'crashes'. Im giving it another go now.

I was afraid the severe headaches when i increased 5mg was from it pushing my BP too high....recent TTT showed I didnt have OH...But now im wondering about that too!!

Yday the severe migraines started about 3.5hrs after taking the 5mg dose...i took my BP, it failed to read it twice and then picked up at 125/54. (these are proper medical BP machines, I work in a hosp).

I know people in the past here have talked about the difference in Diastolic and Systolic pressures can cause problems even when your not classed as hypotensive.

Can anyone fill me in on this??

I remember on my TTT when i was tilted looking at the BP screen and my BP was 136/45, the clinicians who were doing the TTT had to google POTS before i went in. That should tell enough about what they knew about it!

I thought the report would give a printout of the BP readings but they didnt, just said I didnt become Hypotensive :/ .

So now im wondering are these headaches i get the start of my BP dipping.

Has anyone found anyway of managing/avoiding these severe headaches i.e take another dose as soon as it comes on. Or is it just a matter of perservering when it comes to Midodrine and fight thru them.

Midodrine manages my tachy very well i havta say, and lessens the fatigue. Just when POTS gets bad the 2.5mg is really not enuf to manage it. Im hoping the specialist will add in another longer acting drug with the midodrine that will help keep things more balanced for me.

[s-pot]

hmmm just read up on Pulse pressures there...slightly worried now!!

Seems Midodrine could be widening my pulse pressure....71 yday with the severe headaches (increased cerebral pressure?) I also definately experience an awful lot more ectopic beats when i try to increase midodrine.

Are these all signs i shouldnt persist with increasing??? Im sooo confused!!

[corina]

s-pot, i can't really help you but whenever i get worried or need more information on i.e. bp and/or hr figures i call my doctor and ask if i should worry (or not!). over the years he has learned about dysautonomia and if he doesn't know he checks with my cardio or neuro.

[s-pot]

Thanks Corina but my GP is awful...admits she knows nothing about POTS but has no interest in finding anything out for me either...last time i went into her bout all of this I left wit a script for Panadol to kill the pain and nothing else ... I have no specialists either to ask (until may anyway).

More or less on my own with this until then! The last advice i got from the medical consultant i was seeing was 'medicine isnt an exact science and to ' just mess about with the midodrine' n see how i got on. No one i talk to seems to really know anything about POTS/Dysautonomia...I just hope and pray this Specialist im waiting to see will be of some help!

[corina]

Now that's worrying me, I'm sorry s-pot!

I'm not aware of what causes wide pulse pressure (I have narrow pulse pressure) and what impact that may have. When worried I usually measure a few times a day for a few days, write the figures down together with what happens at that time (like flushing, nausea, dizzyness, tingling) and call my doctor. As I have everything on paper I can't forget. When you are worried I think you need to check with your doctor no matter she knows about POTS or not, she ought to know about wide pp and the impact.

Imo medicine is an exact science though patients are all different., I'm sorry you have to deal with doctors who don't understand.