August 2, 2013 at 4:30 pm #511
I’m hoping people will bother to read through this so that suggestions might be given to me. I know its detailed and long but I just don’t know what to do about this anymore!
I don’t want to go to the local hospitals Emergency dept. b/c before when this weirdness presented itself, I ended up being released either within hours or the following day and no further ahead with knowledge of possible causes or treatment. So…
Its usual for my blood pressure to run low but for the the last few weeks I’ve had the occasional very low diastolic pressure (41), or moderately low systolic (82) or sometimes both low at same time, with and without accompanying low pulse. Three days ago I was not impressed having a pulse pressure of 60 (107/47) but today I had a pulse pressure of 7 with my reading being 87/80, pulse 80 (high resting pulse for me). I know that both wide and narrow pulse pressures can be dangerous.
I’m getting such crazy swings and I’m trying to figure out if its anything I’m doing to cause this newest downward spiral but I can’t find any patterns. By the time I could see a cardiologist or/ and neuro, they’d likely just chalk it up to the POTS which they know very little about in this town anyway. I haven’t had the tachycardia anymore since February(mestinon!) but I do still get the dysautonomia-like symptoms. I’m strongly suspecting MCAS after reading Dr. Afrin’s paper but of course I can’t be certain that its the cause.
Four hours before the narrow pulse reading, I had a severe ‘drunkenness’ episode (way beyond brain fog) about 20 min after my usual 1/2 gluten free turkey/cheese wrap. (I would get those ‘episodes’ alot during the first 4-5 mths of my POTS onset last summer but now its much less often and sometimes not even seemingly to be related to low blood pressure.)
Anybody watching me would think I’m drunk out of my skull. I couldn’t keep my head up straight, my eyes kept shutting on me, my speech was slurred, and my limb movements were uncoordinated. Lying down made my tinnitus and head pressure worse yet sitting up made my head wobble.
Since today’s drunk-like episode, my blood pressures have been documented all afternoon and with the help of 60mg sudafed (works better for me than midodrine), the last bp recording was much better at 104/69 pulse 76. Does any of what I’ve described ring any bells to ANYONE as to what might be going on. Advice on where to go from here?
Dr. Diana… could today’s symptoms and bp readings be related to IIH or CCSVI.August 2, 2013 at 5:05 pm #4032
I forgot to mention 2 things- ATIVAN -I should also have said that the drunk symptoms came on fairly rapidly. I let 15 min go by before lying down. When that caused the head pressure to increase, I took a .5 ativan b/c I know it can be a mast cell stabilizer and its helped me with this before.(I use .5 ativan at night for sleep disorder). Within 20 min. I felt much better and by an hour later I was pretty much back to normal other than the crazy blood pressures were happening. So, is this likely MCAS and if so, what did I do to trigger the granulation?
SUGAR READINGS are also fluctuating – I often have hypoglycemia in the mornings (3.2-3.8) and my usual after meal level is still low (mid 5’s). But today my hubby wondered if my episode was actually a hypoglycemic reaction and took my glucose reading and it was higher than we would have expected (6.3).
I haven’t eaten much today for fear the mental/neurological symptoms will occur again which they now are but probably due to NOT EATING. Now my glucose is 8.3! What???
Just wanted to give you all info in case its relevant. If you have any thoughts as to what’s happening, please let me know. BIG THANKS.August 3, 2013 at 8:45 am #4038dab78Participant
hi! i have never had anything like what you described but i am having problems with pulse pressure (barbara explained it to me, i never knew there was such a thing) mine is really high
110!!!!-(sometimes). i have not yet asked the cardiologist if it means anything, if he says no i guess i’ll have to find a new cardio. i have been on mestinon for 21 years was told i possibly
had myasthenia gravis due to the response to mestinon. i haven’t seen a neurologist in 12 yrs and have been having more problems so went to a new one in april- she doesn’t think i have mg- saw a new cardiologist his response to me taking mestinon was it works in dysautonmia? i still have svt, pac’s, pvc’s and a-fib even with mestinon. i too am having problems with blood sugar they say i’m pre-diabetic, they actually e-mailed me this but didn’t tell me to do anything!
i do not know anything about mcas i have read a lot and sometimes things don’t sink in like they use to!!! blame it on the brain fog!!!August 3, 2013 at 1:13 pm #4039
Hi dab78- Ya, I don’t understand what’s happening to me. I can feel ‘it’ coming on and then BAM, I suddenly feel and act like I’m drunk plus I’ll get lots of head pressure but not really a headache. It’s crazy. It’s full blown out of my mind DRUNK! Unfortunately, I don’t get the nice warm glow like I would with a vodka/ice tea. Those days are long over 🙄
I’ve responded very well to Mestinon but for the tachycardia issues only.
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