Very Bad Day

[HopeSprings]

Simmy -- one more question. I saw Dr. Tullo before my POTS diagnosis -- he seemed ok. I would like to go back now that I know what is wrong to have him "manage" me, but only if he knows more than "drink lots of fluids, load up on salt, try Florinef." He's only twenty minutes from me, which is so convenient, but only worth it if he knows his stuff. Is he up on the latest research, does he dig deeper, look for underlying causes etc?

Thanks.

I can't even count the times I was told, way back before I figured out what I had, to calm down, that I was having a panic attack, or anxiety, or hyperventilating... and they're the "experts". We know better now and thanks to dinet and its members, countless others do too.

Yes, it does leave me breathless when that happens. It's totally involuntary, I even said on the video that I was trying to breathe normally, but I guess with my heart pumping so fast and not filling the chamber completely before pushing out the blood, my brain compensated for the lack of oxygen by making me breathe that way. After watching it again I heard myself say "I'm getting buzzy in the headed." Man, what a ride!

Naomi - I'm lucky to have found my PotsDoc / cardiologist on the physicians list here. Dr Nicholas Tullo, East Orange, NJ. I'm happy with him and I know I'd be much worse off without him. The watch is a Polar. I can't read the model number, but It was the cheapest one, about $60 two years ago at modell's, but I'm sure you can find it on Amazon or elsewhere. Just make sure you get one that comes with a wireless chest strap transmitter, so you can view your heartrate in realtime and see the trends. As far as barometric pressure, I'm convinced it has a real impact on how we feel, in fact just a few weeks ago we had a nice conversation about it. Search for "Linking Barometric Pressure". My meds have helped some, to the extent that I'd be much worse than in that video without them, but...

lieze - You're right. Again I performed the activity (driving, standing) only about half an hour after taking my morning meds. Could another few minutes really have made such a huge difference? Still, there have been times when I woke up a little early, went to the bathroom and then back to bed with only minimal tachy (120-130), before taking my meds. Maybe it was that pink flamingo / yellow sailboat thing (private joke). It is possible though, as you suggested, that my meds simply aren't working for me as they once did. I am after all getting worse overall over the last few months.

OK, weight. Before I got sick two years ago I would eat over 3,000 calories a day just to keep from losing weight. I'm 5'10" and back then I weighed 142. I was that way all my life, I could eat a cow and lose weight doing it. Within six months of becoming ill I ballooned to a high of 168, even though I had little appetite and ate much less, but obviously my activity level also tanked. I literally looked like I was in my third trimester, it all went straight to my belly. It took over a year, but I've managed to get back down to about 150 now, but don't ask me how I did it because I haven't got a clue, if anything I'm even less active now. Maybe the tachycardia, which instantly induces sweating, helps to shed the pounds

[Simmy]

Thank Chaos, I'm better. My days don't usually get that bad. Today is actually a great day - 56 to only 104 last I checked. Amazing how a 48bpm jump upon standing is a great day.

Yes lieze, we must learn to listen to our bodies and submit when it tells us to. Gripping the wheel and saying "I'm almost there, just a little more, I can make it" is something I'll never do again either. You're right, we'd be wise to follow our gut, but I think mine is telling me to quit all my meds and start over, and replace my legs with prosthetics so I no longer suffer from blood pooling Whatcha think?

Corina - I was on a beta blocker early on, but did not tolerate it well - extreme headaches, much worse with it, so my doctor put me on Verapamil, which initially did lower my heart rate by close to 30bpm, but over the two years has become less effective. I wonder if I'm simply building a tolerance to it.

Thanks Futurehope and everyone else. With that video I too can't imagine being declined SSDI again. My attorney also asked me to record my daily heart rates, three times daily, for a week and print out the results to be submitted (I use a SmartSync Heart Rate Data Logger that receives the signal from my chest strap, records it, and displays it in graphical format... I'll post a link to the printouts soon). I just finished my week and some are astounding. I also would rather lie down than squat, but sometimes you gotta do what you gotta do to stop the tachy quick, and squatting works even faster than lying down. I don't do up so good though.

Naomi - Dr Tullo is very knowledgeable about POTS, methods and tools that help and the latest meds. I'll admit he is not overenthusiastic about delving deeper into the underlying cause of my particular case, although we believe a bout of bronchial pneumonia that I suffered two months before becoming ill caused it, but we did figure out what kind of POTS I have and how to best treat my symptoms. I tend to agree with him because the treatment would likely remain the same anyway. You can check out his website here:

http://www.njfaint.com/

[Maxine]

Simmy,

I feel for you, and wish you didn't have to file for SSDI. I just turned 51, and I just got approved for SSDI after a long 3 year battle. It was a diffiuclt decision to make, and I felt my dignity fade. However, I have it back! Having to file for SSDI should have no shame. It's just something we need to do when we are no longer able to handle the daily grind of working a regular 40 hour week. Hopefully you will be able to return back to work some day.

One thing that helped me with SSDI was following through with certain forms----especially functional capacity reports. I just called my local SSDI office to make sure the reports were received, and if he didn't know, then he gave me another phone number to call, and I spoke with someone else. I was approved at the hearing level, and I had a good impartial doctor testify that it was not possible to do any type of work, and that my illness was progressive, and the prognosis was poor. It was good in the sense it helped my SSDI get approved, but sobering to hear his view on how sick I am. It's so hard to constantly prove how sick you are to doctors and SSDI, while at the same time you're in denial on the gravity of your illness, and how it has impacted your life.

My POTs is secondary to EDS, and I didn't get diagnosed with the EDs until 2006. I was diagnosed with POTS first, as those were the symptoms that were the most bothersome at the time. I still feel the POTS symptoms are what puts the breaks on when I'm trying to do anything physically.

Squatting is the quickest way for me to get the tachycardia relieved. I still get in even on my beta blockers. I've been on propranolol since 1990. I feel a prisoner to my beta blocker, and have tried to get off of it a couple of times without success. I suppose the poor vascular tone from the EDS is what causes the tachycardia, but I would have never guessed this even 5 years ago. I learned so much at the NIH EDS study, and it has helped me stand up to doctors more. If NIH said it's real, how can they deny that! I didn't even go to NIH until after the SSDI was approved.

I'm glad yoy're not like your vidio all the time, as I couldn't imagine that. Just one day like that is enough to mess you up for a while.

Wishing you all the best.

Maxine :0)

[yogini]

Hi Simmy - you might want to try to play around with a few different BBs starting at the smallest dose (I take 1/4-1/8 pill of atenolol. They all work so differently - or to take one alongside with another med that raises your BP. Anyway, just a thought...your video still stands in my mind. Glad you are feeling better!!!!

[corina]

simmy, i when i started bb's on 50 mg i felt cured and really thought they did the trick but after 10 to 12 days they didn't work anymore so i slowly worked up and every tuime i increased i felt cured again. i'm at my "best' (heartrate wise that is) when on 300 24/7 but then am too tired to even lift my head so i came down again to 200 which for some years now keeps the best balance in heart racing every time i get up and being too tired to move.

hope this helps a bit!

corina : )

[Simmy]

Maxine - The way I look at it, for 29 years I've paid my monthly dues to the disability insurance company (in this case, the government) and now it's time to collect on the policy, no different than any other insurance policy, so I have no shame or loss of dignity by getting the money I deserve. My doctor did indeed take the time to fill out a functional capacity report on my behalf, but who knows if anyone at SS even looked at it. I have little doubt that I'd easily win at the hearing stage, but I'd love to not have to wait that long so hopefully the video, along with my week-long heart rate reports will be enough at this second stage. I'm glad you finally got approved!

Yogini & corina - I'm happy that the beta blockers work for you, I remember when I first tried them they worked amazingly well at lowering heart rate, but I quickly began developing severe headaches, way worse than anything I'd experienced before, even while lying down, so my PotsDoc got me off of them and put me on Verapamil, which also worked well, but only for a few months. I have noticed though that when I'm standing, even when my heart rate slows down some when the meds do their thing, it doesn't necessarily help the headache and dizziness to the same extent. Lots of trial and error.