dawson20 Posted March 25, 2008 Report Share Posted March 25, 2008 Hi there, Im new here (but not to dysautonomia), and wanted to get some insight into a few things... Some background - I have had 'issues' since I was a young teenager - the first sign of autonomic stuff being orthostatic hypotension that I was told was caused by puberty and "PAT" (paroxysmal atrial tachycardia) that showed up on a holter at 12, along with resting tachycardia that never did get explained. It was all brushed off for a number of years. Basically I just adjusted to it. At university I developed chronic chest infections, pericarditis, renal issues and ultimately got so burned out I had to move back home to finish my degree. After my first baby things really fell apart. Literally within minutes of the birth my blood pressure tanked and never came up over 80/40 on its own again. I went for a month with a usual sitting pressure of 75/30 (that was always good for shock value at the weekly checkups with a new nursing student every week), as soon as I stood it would drop and my heart rate would skyrocket. Tilt table test showed that my bloodpressure became undetectable within minutes of standing upright, and my heart rate was 160-170. I was basically bedridden at that point obviously. I was started on florinef and slowly started to get my life back. It took a year, and ultimately high doses of florinef and metoprolol to conrol my symptoms but it worked. This was all in 2003 and I am now very functional from a BP perspective so long as my meds are in check. I have midodrine for 'rescue' purposes when i am sick and things fall outof whack for whatever reason, as well as pressure stockings which help a little with my numbers but dont seem to do much for my symptom wise. Anyways, all this got alot more complicated when my first son started to develop neuro problems (ataxia, speech delay) at 1... he was diagnosed a year later with Complex 1 Deficiency mitochondrial encephalopathy. Today at 5 he is moderately affected by mito but we were lucky, as most of it is motor skill related and he is cognitively a bright and funny little boy. His brother came along immidiately showing signs of mito and while his biopsy was negative we still continue to investigate as he has definate issues (low blood sugar, tremors, etc). Since my diagnosis I have had a huge workup at Mayo which showed small nerve fibre polyneuropathy, autonomic neuropathy, and a tachyarrhythmia. Ive had a musclebiopsy to test for mito which showed mild changes but nothing conclusive, and Ive had an EMG/NCS that was abnormal but again not enough to be conclusive. Most recently I have developd what my family doc suspects is motility issues and I am on reglan (soon switching to domperidone) for that which has worked miracles. So theres my 'short' intro (Im sure im missing stuff). Onto my questions... What beta blockers do you guys use typically? Does anyone deal with low potassium? What about bradycardia - I need a certain amount of metoprolol to 'feel' good but usually it too much as my heart rated dropsto 50 or less... any less metoprolol though and im wasted... anyone struggle with this? Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 25, 2008 Report Share Posted March 25, 2008 Hi,I take propanolol and K-dur. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 25, 2008 Report Share Posted March 25, 2008 I'm on an eighth of a .1 mg florinef tablet, and a low dose of lexapro (10mg). I can't tolerate beta blockers, they make my bp too low. I'm hypersensitive to meds, in general.Nina Quote Link to comment Share on other sites More sharing options...
corina Posted March 25, 2008 Report Share Posted March 25, 2008 hi, welcome at the forum!i'm on a very high dose of metropolol. i was on 300 mg, which made me feel "best" but as i was so very very tired i lowered til 200 mg (24/24). this is what works best for me. but this is where we all are very different as i think most others are on a much lower dose of bb. i do have hr around 50 (lower sometimes) but my cardio told me not to worry about that, so i don't! unfortunately i couldn't tolerate the florinef, but i'm thinking of trying again.take care,corina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 26, 2008 Report Share Posted March 26, 2008 Welcome,I take massive doses of potassium, and have a very hard time with heart rates that are way too fast and then drop like a rock. Atenolol accentuates it and i got a pace maker a year and a half ago. They have tried several times to up my beta, but even with a pacer the beta is killer, fatigue wise.Many people on here run borderline or low potassiums, I'm not sure why. I have a specific disorder. I am glad you are doing better and hope it stays that way! morgan Quote Link to comment Share on other sites More sharing options...
pat57 Posted March 26, 2008 Report Share Posted March 26, 2008 I get bradycardia during neurocardiogenic episodes. I am on Norpace and cannot function without it. I read (IF I REMEMBER CORRECTLY) that seizures lower potassium levels. The body dumps it into your system during a seizure. I have had seizures and low potassium. It is also lowered ( a little) from Norpace. My EP does want me to take some potassium. Do you wear compression stockings? They help me alot.good luck Quote Link to comment Share on other sites More sharing options...
lalalisa Posted March 28, 2008 Report Share Posted March 28, 2008 Keely,Hello!! I just wanted to write and welcome you to the forum. We're glad you're here!I hope you find lots of help and encouragement here,Lisa Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted March 30, 2008 Report Share Posted March 30, 2008 Hi!Welcome! I hope you find answers to some (if not all ) of your questions here along with support! I found your story interesting and it sounds like a really long road. The beginning part I saw quite a bit of myself and my sister in your description.I have low blood pressure at times, hardly ever above 110/75 or so. But, it can every once and a while skyrocket. I tend to be tachycardic most of the time, but with med changes etc. I do get brady and feel awful.For beta blocker I take Atenolol 25 mg a day. As far as I know I don't have low potassium issues.I also take Zoloft for POTS symptoms.So, how do you feel now on a daily basis? Are you still working a lot of your symptoms out?Good Luck!!! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.