king_saladin

tessa I think "healthy" BP is suppossed to have 30 points between the systolic and distolic. Not really sure.....

Once when taking midodrine, I had a hypertensive systolic number and a hypotensive diastolic number. Odd stuff

Sometimes I take Vicodin for my back pain and migraines. Well I only take it about once a 1 to 2 x a week and I ALWAYS feel better, like I don't have POTS, I have energy and am able to complete all my tasks. Well I know it's addictive, been there...........and I know it's a narcotic but I was trying to figure why it makes me feel so much more active so I checked my rates the last 4x I needed it and standing my bp was 122/84 hr 82 than 3 minutes late it was 120/84 hr 76 and after 5 minutes it stayed hr of 76. MY HR IS NEVER 76.

Anyways my question is why does the med actually take my POTS away? Would all narcotics do this to anyone or is there something in the meds that help with our illness?

I don't know what the deal is. I've had a narcotic pain med a few times lately (low dose, one of the weaker ones like hydrocodone(vicodin))... and noticed how I oddly felt better with regards to the autonomic. I'd check my BP and I've never seen my BP/HR stay so level from sitting/standing before.

I don't know... narcotics are CNS depressants, and apparently they tend to lower blood pressure a little? I wish there was good medical documentation on this subject, I'd love to find it. Maybe a wild guess is that they slightly slow down the CNS processes which lessen the dysautonomic responses?

Have had a few rough episodes today where what feels like "electricity" passes across my field of vision and down my face (like tingling).

Do those things feel like a paralyzation of that specific area? Where you kind of have to freeze the muscles around there?

Hello, I was wondering if anyone knew if my heart rate while exercising was normal.  I was running and would be around 185-190 and jumping to 200 every so often.

Do you know what your maximum heart rate is?

I forget the range, but I think it's usually around 200bpm.

Really your actual rate will depend on how hard you're working out. Going over 185bpm is probably past your lactate threshold.... for how long can you run at over 185bpm?

I dont knnow, but I think if your heart rate was really over working, you should know about it by losing energy, going out of breath, not being able to run as fast, etc...

I've never really gotten chest pains like that, in the morning and so painful... though for years I have had periodic chest pain (stinging). For me it's all from acid reflux/heart burn er whatever. It had me slightly nervous for a little while, but then I had my cardio checked and found it was only heart burn.

Hi -- I was just reviewing your past posts b/c I wondered whether you'd been diagnosed with POTS ... it doesn't seem so (unless I missed something or unless you didn't say...)

I've been diagnosed with dysautonomia... the specialist seemed to point out that it wasn't technically POTS, though it is orthostatic intolerance mostly involving changing blood pressure through postural changes.

All this is to say, since normal is considered 50 to 100 bpm, you're probably doing ok--especially since you're on beta blocker which would slow you down a little anyway. Do you feel bad at this heart rate?

No not usually. Though I have the usual chronic fatigue and all that, I generally feel decent with the low heart rate. When my BP is really flutating, that is when my HR goes up around 70bpm.

I guess the lowered heart rate from the beta blocker isn't really something of concern? Cardiovascular tests haven't shown any problems (besides the dysautonomia of course)

Particularily in the last year or so I've noticed my 'resting' heart rate often going below 60bpm.

I take a beta blocker daily.

I get a lot of aerobic exercise every year, but I'm out of condition for the winter and now often get readings below 55bpm.

Two immediate family members also usually have low resting heart rates... and although they both take a beta blocker as well, I know one of them has had a low resting HR well before they started taking meds.

Occasionally my heart rate will jump up around 70bpm, but it mostly stays between 47-63 when ever I'm just sitting around.

So I ask, what is your typical resting heart rate?

I'm very curious about why my resting heart rate is a bit below the average. I don't know how much of it is caused by genetics/aerobic conditioning, compared to being caused by POTS. Does POTS ever really make heart rate decline (when the blood pressure is still in normal range)?

Thanks for any responses.

When I plan on going out for a while in the winter, I wear multiple pairs of socks (when I'm being smart).

Always get cold feet. I could never do without slippers in the winter.

Thing is, my feet sweat easily too. With the thicker socks, I end up wanting to change them multiple times a day.

I really don't necesarily know what I'm talking about at all... but...

I think procrit (EPO) is just useful if the patient has a low hematocrit level. Possibly hemoglobin level as well... but I'm not as confident about that part.

Could altitude aclimination be a natural alternative, or double help with the EPO to raise the red blood count? Possibly.

Link

This has a brief mention of EPO and studies regarding it and orthostatic intolerance... though it doesn't appear to give links to the actual articles.

When I search for info about blood pressure online, I usually find example explanations involving a high systolic/diastolic or low systolic/diastolic. But nothing really regarding each measurement individually.

Measuring my BP a few minutes ago, I had 133/40.

This is after taking proamatine and driving. I feel quite more comfortable than I usually do just after driving home. Also feel the side effects of proamatine (tingling hair)

Pulse is norm... 59bpm. When I'm just sitting around, it's almost always below 60bpm. Sometimes as low as 45bpm.

133/40... is this something to take note of? Any dangers there? I have POTS-like orthostatic intolerance.

Thanks for any help.

Thanks for the replies

Depending on the type of dysautomia you have, the answer changes. Pure Autonomic Failure (PAF), Shy-Drager, and Multi-System Atrophy (MSA) tend to worsen over time. Other types wax and wane, and some people get better altogether, especially if they had a sudden viral onset.

Ohh, I have a general orthostatic intolerance... very similar to POTS but I don't think that it technically is POTS because my heart rate doesn't fluctuate very much from sitting/standing (just blood pressure)

Does dysautonomia most commonly stabilize at a certain severity, or does it often get better or worse as years pass?

Or is it quite unknown?

I'm quite clueless - I always figured that it nearly always stayed at the same level. I've searched around but cannot find much information on the subject.

Also, does anyone know if symptom management may play a part in long term progress? Or is symptom management completely and only for short term improvement?

Thanks for any info!

The side of the family that I got this condition from is mostly western European and Scandinavian descent.

I have Chiari Malformation, which really flared up around 15 years old. The dysautonomia I think really became a problem around 17 years old.