potsgirl

According to my POTS specialist at Mayo, I don't have "POTS" per se, because their definition includes a 30+ increase in heart rate when standing (from a supine position), without a major BP drop. He tells me I have severe orthostatic hypotension. The cardio I see here, who also does a lot of work with POTS patients and did my TTT, tells me I have POTS due to my HR numbers. Here are my usual numbers:

Supine: BP around 90/64, HR 60 (I have a pacemaker that keeps it at 60 due to bradycardia)

Standing: BP from 60-75/50-60, HR 110-140

My BP falls a lot, but my HR usually at least doubles. I can faint when my numbers are anywhere in the 60s, or sometimes low 70s, depending on the circumstances. I think the purer definition of POTS is the one my Mayo doctor has shown me. Does this help?

Cheers,

jana

Again, this sounds like it could be fibromyalgia....

Sorry, just had another thought...Swallowing issues can also be connected to sleep apnea. I know there are several people on the Forum that also have problems with this. Might be worth checking out, especially if you don't sleep well at night and are excessively tired during the day.

jana

Good for you for undertaking such a challenging goal! I think it's terrific. I feel better when I get some exercise, too, so you work on making it happen, and we'll all be cheering you on!

Let us know how you do and good luck!

Jana

What wonderful news that your son is home with you at last. Hopefully he'll continue to improve and thrive daily. What a great day for you and your son!

Cheers,

jana

I think that Eric's approach is very similar to mine, and that he has some very good ideas. I try to stick to a low-fat diet, and watch my sugars. No fried or snack foods. I also eat along the moderate lines of the "zone", the 40:30:30 Carb:Fat:Protein ratio in my diet.

The only time I have gained weight was from medication, and it's certainly annoying. I usually gain weight when trying to switch birth control pills.

I know you can lose the weight, and any exercise you can get in will certainly help, especially walking if you're able. Exercises from your chair/bed also help!

Good luck. I know you can do it!

Let us know how you progress

Jana

I don't think so....I've worked out consistently most of my life, and before POTS (BP), if I really worked out hard my legs or arms would get itchy, too.

Best,

Jana

Tachy,

Points for such creativity! Like Firewatcher said, sorry you're suffering, but we're glad to welcome you to the Forum.

Stats:

Supine: BP 90-95/60-65 HR 60

Standing (still): BP 65-75/55 HR 110-140

I'm positive for POTS according to Tilt Table Test, but also have Orthostatic Intolerance and heart problems, including dilated cardiomyopathy and bradycardia = pacemaker.

Cheers,

Jana

Did you ever do a TTT? The symptoms you're describing almost sound like fibromyalgia (sp?) along with chronic fatigue syndrome. I know they can all go together, but a positive TTT tells you a lot.

Jana

Amen.

I can't eat bananas either! They make me really sick to my stomach, along with OJ. If your potassium is too low, I would think that would exacerbate your low heart rate. Could you let us know what happens to your BP when you're HR is low? Have you worn a Holter Monitor?

jana

Chrissy,

If you go to Webmd.com or some of the other reputable medical sites, it explains that bradycardia is any heart rate that is below 60, since the average HR is 60-100 in most adults. Athletes, or people who take certain medications or have a heart/electrolyte problem may also have a lowered HR, among other causes. Usually they won't do too much unless you can link your symptoms with your lowered HR. Also...When your HR gets low, what happens to your BP? I have a very low BP also. And I second Flop's recommendation to not just stop your Nadolol.

Best Wishes,

Jana

That's right...I remember my lawyer telling me that now. I don't expect to see any money from SSDI for another 4 months or so (per my lawyer), but I know that LTD and her payment comes out of that initial back payment. And that the amount of money stays the same once you begin receiving SSDI payments, since LTD makes up the difference between the SSDI and the LTD. Hmmm, I'm still not writing very clearly. Thanks for doing such a good job making this all sound more simple and straightforward, Thankful!

Cheers,

Jana

Unfortunately, this is common practice with LTD plans. If you are approved for SSDI, which I was once we went to court last month (took 1 1/2 years to get there), your LTD usually has the right to get a portion of your SSDI money that's owed to you from the time you filed until your case is approved, if you receive those monies. Look closely at your LTD plans. Most of them do this, which really is not fair, and yet one more way the system takes more away from us.

Sorry couldn't be more cheerful. PM me if you'd like more info. I just applied for continuation of my LTD, too.

Jana

Skyblu,

Both Florinef and Midodrine are meant to help regulate your BP. In my case, they're supposed to help raise my BP. I can't tolerate Florinef well, but I take Midodrine sometimes when I really need some extra energy during the day. Also, drinking lots of water/Gatorade, eating a lot of salt, and sometimes even raising the head of your bed can help raise your BP. Please PM me if you'd like more info.

Cheers,

Jana

I'm not positive, but I'm pretty sure that POTS was added not to long ago to NORD. I think it may be listed under another name? Anyone else?

jana

How can they tell definitely that your POTS is caused to a virus? I moved to Arizona 5 years ago, and became sick within 4-5 months of living here. They think my POTS is due to picking up Valley Fever, which is pretty common in this area. It always sounded to me that if they couldn't pinpoint a particular reason, they dumped it into the 'virus' / idiopathic bin.

Thanks,

Jana

I would love to do more weightlifting, but it seems to knock me out completely. I'm lucky that I can still do some cardio 3-4 times a week, still. I've always worked out, so I feel so grumpy if I can't do something, even if it's a 20 minute slow walk. Have you been weightlifting a long time? Do you do cardio? I'm just asking because while your number are reasonable (I also have low BP), it seems like your BP would have gone down a little more after 15 minutes. Have you tried taking your BP right when you finish your workout to know what your high is? I tend to work out until I reach a BP of around 135-150, and try to keep it in that range, then slowly cool down.

It's great that you're getting that activity in!

Cheers,

Jana

Dear Maxine,

I'm so sorry that you're having these problems with your head and spine. I really do think you need to see a good neurologist - some of your symptoms sound pretty serious and scary. Thanks so much for posting those adorable pix of your grandkids. We all can use a smile!

Hope things get better for you soon,

Jana

Yes, heart rates that low should certainly be considered bradycardia!

I've never heard of the magazine. Where do you find it? I'm in the Southwest....

My heart rate was going into the 30s and low 40s when I wore a holter monitor, which is of course Bradycardia, and I ended up with a pacemaker. Low heart rates can make you super fatigued! Your numbers seem pretty low to me. I think it's a good idea to call your cardio again, especially if you're having symptoms.

Good luck,

Jana

I'm with Thankful. I would do the drive in one day, get it over with, and then collapse. Bring a comfy pillow, and the rest of the items she mentioned, plus healthy snack food. Good luck!

Cheers,

Jana

Yay! It seems our prayers have been answered. What wonderful news. Take care of yourself, and your son.

Cheers,

Jana

Hello Fellow Lady Sufferers,

There is going to be a special on vulvodynia with current research and treatments on ABC's 20/20 next Friday night, August 7th. Just thought I'd let everyone interested know...It's chronic pain around your vaginal area, and can last for months or years. I'm excited to see what's new and hopefully improved! Now if we could get the same for POTS...

Cheers,

jana