dawson20

Sorry it looks like your getting a cath done - I had one done in May and while its definately not something I would sign up for just for kicks, it wasn totally horrible. They did mine while I was awake, just froze the area around my vein/artery in my thigh. It was unpleasant but certainly not too painful. Good luck, hope they can get you in quickly.

Im on metoprolol and have been for 5 years now - it is my lifeline. The few times we have tried to wean me off it have been a total nightmare (crazy high heart rates, and unreadable low blood pressures). Side effect wise I have had no trouble at all so far - I have recently developed some pretty serious lung issues (low oxygen levels etc) that were theorized to be caused by the beta blocker (beta blockers can have a negative effect on lungs by causing bronchospasm in susceptible people - usually people wiht poorly controlled asthma though) however were quite sure thats not the case. If you are on higher doses its worth it to be aware of symptoms of electrolyte imbalances (numbness/tingling, muscle cramps etc) as it can cause potassium and sodium imbalances, however these are usually at quite high doses. I take 50mg twice a day, and have been as high as 100mg twice a day and never had these issues with it. the other thing to be aware of is your resting heart rate - metoprolol lowers heart rate (hence why its so hepful with pots) but it can cause your resting heart rate to be too low, which will cause more fatigue... how low is 'too low' depends on you and your body - some people cant handle being under 60, other can go as low as 40... just depends... but if you feel yourself more tired than normal keep an eye on that resting heart rate. Mine has gotten as low as 40 - I was a mess... so long as it stays over 50 Im in good shape. Everyones different though, I hope it provides relief! It really was the turning point for me as far as symptom relief goes... the florinef helped but the metoprolol gave me my life back.

I havent posted here for a while but figured I would throw this out there in case anyone else has experience... in May I piled on yet another 'DYD' diagnosis when I started dropping my O2 sats with any exertion (were talking about 20 feet of walking). My resting O2 and blood gases were perfect but my 6 minute walk test lasted 45 seconds and my O2 was in the 70's. Im on 3L continuous O2 at home now and as long as I have to O2 Im doing great... they admitted me and did a very thorough workup and ruled out blood clots, Pulmonary Hypertension, Structural heart defects, and lung problems (normal CT). They have no idea what is up but my next test on the chopping block is another echo that involves bubbles (?) to look for a hole... They dont sound optomistic they will find one though. Anyone else with experience??

Were actually waiting on a 24 hour urine/potassium excretion test to see how much i am losing there, hopefully it will shed some light on things. Otherwise my kidneys check out well... creatinine is good, etc. I cannot imagine taking that much potassium... here i was complaining about half that! We know the most likely culprit is the florinef, but i cannot reduce it. We have tried countless times and every one ends in disaster... the last attempt was last fall, where we did try 1/4 pill less every 3-4 weeks and it did well initially but I crashed hard over Christmas and wound up on the same dose I started at before I had any control over my symptoms again... it just doesnt work. I know ultimatley the docs will choose to lower the meds and have me miserable than risk the hazards of low potassium but im so hoping we can figure something else out first. My docs referring me to my old neph to see if he has any thoughts on how to get control of all this. bah.

I actually find this interesting because my symptoms started literally within minutes of having my epidural removed (they removed it after I had my first son, and then got me up to go to the washroom and I hit the floor). My blood pressure never did come up over 70/30 standing after that without meds. We always assumed the stress of childbirth triggered it but had never given any thought to the epidural... That said I had a second epi with my second son 2 years later and did just fine... although I was on massive amounts of IV fluids that time - my OB wasnt taking any risks.

That makes sense - everytime I push bananas it seems my levels drop... I have read lima beans, tomatoes and molasses are higher even than bananas... Regardless 150meq is amazing - how does your gut stand up? Im at 64meq a day roughly and it is murder on my stomach... I cant imagine more than doubling that... yikes.. Good to know about the banana/carb thing... I will start pushing the other sources and see if that helps... Thanks for all the suggestions... I know IV K+ is not a walk in the park, and im definately not anxious for it by any stretch - I just dont know what more to do. Yesterdays draw came back at 2.9 so im now dropping fairly quickly again (I was 4.1 a week ago - took me weeks to get up that high). Its just so frustrating.

I have scoliosis, I have a C shaped curve that actually improved on its own (at the worst it was 45 - 52 degrees dependingon which doc you asked and now its 24 degrees) which apparently 'never' happens but hereI am. Anyways, its now being acknowledged that I likely have a myopathy of some sort which means all bets are off when it comes to what a curve will do etc... 60 degrees is VERY severe and I have never heard of anyone that bad gettng away without surgery... as much as it ***** when the curve is that bad it will start to interfere with heart and lung funcion. Has she ever been checked for Marfan syndrome? it too can cause lax joints, scoliosis etc... some other features are eye issues, nearsightedness, long fingers, tall stature, long arms... it an also cause weakness in the great blood vessels which can be very serious and needs to be monitored if it is... worth looking into. Sorry... Hope you guys get answer soon... Edited to add: small fiber neuropathy actually isnt detected with electrical stimulation tests (as per my NCS tech apparently), something to do with the frequency level being too 'noisy' to get meaninful results... instead it can be confirmed with skin biopsies which manually examine the small nerve fibres, or another test called a 'sweat test' where the entire body is coated in a powder that turns purple when sweat contcts it... then your put in a heated box and if all your smal nerves work, you turn purple... if they dont all work parts of you wont turn purple... fun stuff... but yea... EMG/NCS tests the larger nerves but cannot test the small nerve fibres...

I am in Canada and seeking a second opinion on all my stuff (neuro/autonomic/possibly mitchondrial) and Im looking for a Canadian doc well versed in dysautonomia and treatments.... I have no idea where to even start looking... any suggestions?

So I take forinef and metoprolol to control my POTS symptoms and they work beautifully - I have my life back. I have been on the same doses (.2mg florinef, 50mg metoprolol twice a day) for a few years now and have been thrilled with how well they work. Last september my potassium dropped (side effect of both meds im told), and at one point was 2.8 (very low) and landed me in the ER. I have been on increasingly high amounts of oral potassium suppliments (I currently take 3 600mg slow K in the AM and 4 in the evening for a total fo 4200mg of suppliment on top of very high potassium diet) and continue to struggle with low potassium. My family doc wants me to start tapering the florinef (a disaster. every time. i cannot and will not do this), as they are just out of ideas at this point. My kidneys have been checked out carefully, and nothing has come up. they have no idea why all of sudden i just cant tolerate these doses any longer. At this point, tinkering with my meds is out of the question. I wont let them, I cannot go back to where that will take me. (on the couch indefinately). I know however that the only other option is IV potassium at this point and it is not a regular thing.. my docs are very hesitant to even discuss it. Does anyone else here deal with this problem? Are there any other beta blockers that help without affecting potassium?? Im lost... thanks in advance.

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?