Very Bad Day

[Simmy]

Hi guys,

I woke up this morning feeling lousy, so I took my meds and stayed in bed for half an hour to let them kick in. When I got up and returned from the bathroom I felt so horrible that I decided to document what a really bad day looks like. I shot a quick video with my cellphone showing the outrageous heartrate spikes when I stood up. Normally when I stand up, on good days I'll spike 30 or 40bpm and on bad days 50 or 60, but this morning... well, here's the link:

I just emailed it to my disability attorney. Maybe now social security will believe me?

I hope y'all are having a better day than me.

[miranda]

oh simmy i am SO sorry you are suffering like this,

if its a really bad day , please do not stand up and put your self through that,

I just hope the disability attorney is shocked as much as I am !

(((hugs))) and support.

[blueskies]

Hi Simmy,

You were obviously having such a bad time of it. I have found that squatting will keep my heart rate down too, but when I stand it picks up speed and makes me week and dizzy etc. This has been squatting then standing phenomenon has been happening to me for at least 25 years. It took me a while to work out not to do it as no doc could explain it at the time. I try not to squat anymore - rather sit on my backside and then get up really slowly. Which is very annoying if in a library or bookstore or supermarket etc. I mean who wants to sit on the floor in a supermarket? I just never look at the items on the bottom shelves if I can help it. For me, standing from a squat will always make me feel dreadful.

I hope you get the financial benefits you obviously need.

I'm in Australia -- where as long as I'm living with my husband I'm entitled to no benefits. I have to ask him for any money I need. And the benefits available to me should I leave him are way below the poverty line. Way, way below. I understand it's different in the U.S. for some.

blue.

[Notgivinup]

OH, Simmy your video is heart breaking. I'm so sorry you're having such a suck *** day!. More of us, ALL of us should do these videos to show how horrid this syndrome is!

I'm so mad that we have to feel this way I could scream. Mine gets to about 150, I "think" that's pretty much the highest. And squatting does make it go down.

Try to lie quietly for a while. Drink some more. Oh I don't know, who am I fooling, if I knew what worked I wouldn't be sick.

BTW I noticed you're very thin. I am too, I'm 5'5" and about 102lbs. I wonder sometimes if we gain a little more weight would it help us. At least perhaps it would up our B/P a little. However I've had low B/P my whole life and never had AN problems. Just ranting here.

[Ernie]

Hi,

Sorry you are feeling so bad.

Your video is very impressive. I think it should convince the attorney and the judge!

[tinkerbella]

I feel terrible looking at you, but why aren't you calling the doctor for help. Sweet one you are not a science experiment. You need something to bring your heart rate down and keep it down or to see what else is going on with you. The last time that happened to me I had an infection going on... I also was drinking just Gatorade and not enough water. I needed clonidine to bring my HR down right away and they needed to make sure I wasn't having a heart attack or something else which they found pneumonia. Some times making my bed does that to me, but I have meds to stop it. Sometimes someone slips me caffeine by mistake and that will do it to me but I have to stop it....

Are you dehydrated more than usual today? Just brain storming to try to help you.

Wish I could give you a giant hug and make it all stop right now.

If laying down stops it lay down till you can get to talk to your doctor and adjust your meds.

I'm praying for you right now.

[peppermint patty]

Simmy----Words can't say how bad I felt for you while watching this.

If this video doesn't work,

the system has no brains and definitely no heart. ...Pat

[MomtoGiuliana]

So sorry. With heart rates like that your case is severe. I hope your dr is working with you to find the best treatment for you.

[lieze]

I'm sorry.

I hope by now maybe you're feeling a little better.

[ramakentesh]

Interesting that your vein is still quite vasodilated behind your watch. Youd expect with those kinds of heart rates there would be signs of sympathetic overactivity, excessive vasoconstriction and cold pale feet and hands.

Do you pool?

[yogini]

Sorry things are so rough. That was a cool idea to make a video of it!

[TXPOTS]

Simmy,

I assume you just take the DDAVP before bed and consume lots of salt? Thanks for posting. This was me 6 months ago every day. My veins get full after DDAVP, but I must take Florinef or my sodium levels get too low while on DDAVP.

[potsgirl]

Hi Simmy~

So sorry that you're having such a tough time. My HR usually goes up by about 50-70 points when I stand up, but I'm starting off lying down with a HR of 60. What is your BP doing during this time? Mine will go from supine 95/65 to about 70/50. I'd be interested in knowing your BP changes.

Hang in there!

Jana

[JAQUIROUIN]

So sorry.

I undersand you, because some years ago I felt that.

Really you need to go with a doctor, because your hearth need to rest. Maybe you need some medicine for don?t feel that.

Could I put your yuotube video in my web? www.disautonomia.com

Have a nice day.

Sincerly

Jaqui

[Simmy]

Thanks everyone, for the hugs and well wishes. I appreciate your concerns and suggestions too, but honestly, I'm fine. I'm seeing my PotsDoc in two weeks anyway and I'll tell him about this really bad day.

Jaqui - Yes, of course you may.

This is all normal for me now, although this day was certainly much more severe than 'normal' and disturbing. Three hours later I checked it again, this time from lying on the couch to standing up, and it jumped 89bpm (61 to 150) so it wasn't the squatting that caused it. I was better about eight hours later though - only hitting 120bpm when I stood up from 60bpm - back to 'normal' I Usually have a few minutes of standing time before the symptoms become too severe to continue, but this was ridiculous.

I did give my morning Verapamil, Midodrine and Mestinon, more than half an hour to set in before getting out of bed, along with about 12 ounces of Gatorade, (I always have plenty left over from the night before) so it wasn't due to dehydration either. If I was thinking clearly I would have checked my blood pressure at the time, but I'm sure it wasn't good. When I'm lying down and feeling well it's generally 120/70 and when I stand up it averages 100/80, so I suffer from narrowing pulse pressure, but during this event it was surely narrower than that. The reason my heartrate started off so high (104) was because I was moving around and talking a lot before I stood up, otherwise it would have started at around 70bpm, as it dropped to 78 after the first squat, and again 82 and dropping further after lying down, so in reality the rise and fall, for all intents and purposes, would have been about 80bpm.

I do pool in my feet, so much so that I literally feel the blood rushing down when I stand up and oozing back up when I lay down. That's why squatting instantaneously drops my heartrate so drastically, because it squeezes the vessels and shoots the blood back up. Yes, I take my DDAVP only once before bed and ingest way over 5gm of salt per day, along with 3 to 4 liters of Gatorade and water.

I only wanted to document this to help my SSDI case and to encourage others to do the same, especially on bad days, even if it's a bad hair day

Getting this documented was worth the pain and discomfort and I'm glad to share it with my many friends here.

[ramakentesh]

Man your heart rate increases are quite dramatic. And it sounds like you get quite breathless.

[juliegee]

Hi Simmy-

How awful- thanks for sharing though. I'm crossing my fingers & toes that this visible illustration of your symptoms will help in getting disability. I find it hard believe that it won't be approved after seeing this....

I just wanted to comment about your breathing. When I was having similar runs of tachy (not due to postural changes- but anaphylaxis????- I was sitting & even lying during some of the attacks) my breathing was very similar. The faster my heart went, the more difficult it became for me to breathe. During one ER visit, the doc claimed I was having a panic attack & was simply hyperventilating. I didn't feel panicked until my heart went crazy & the difficulty breathing didn't start until the severe tachy started. Hard to explain that when I felt like I was fighting for my life .

Hope things calm down for you & your doc can offer some relief.

Julie

[HopeSprings]

Simmy, wow although hard to watch, I was glad to see this documented. It really does capture the Pots "experience." I have a few questions. If this is how you are a half hour after meds.... are they helping?? I noticed you are in NJ (I am too) and was wondering who your Pots Dr. is? I can't seem to find anyone locally that knows very much. Also, I would like to get a heartrate monitor like the one you have -- can you tell me where you got it, what brand/model etc.? I certainly hope today was a better day. I have to say the last fews days have been miserable for me-- very dizzy -- today was better. Maybe it had something to do with the weather? -- it was kind of grey and rainy for a few days. You mentioned barometric pressure -- have you found this impacts the POTS symptoms?

Ok so that was more than a few questions !

[HopeSprings]

Oh and I wanted to also say -- yes I would think Social Security would believe you seeing that video. How could you possibly work if that happened at work? And just the up and down of the symptoms -- some days not so bad, some days barely functional... how would it be possible to commit to a job? I hope you get it.

[lieze]

I had the same thoughts about the meds Naomi.

Your other episode while driving were right after your meds too.

It takes oral meds 20 minutes to absorb and start taking effect so if you're just waiting 30 minutes you're only giving your body 10 minutes to adjust.

Also what others said about your weight I am the same way. I am a string bean. At one point with my POTS I went down to 90 pounds and it makes me way more tachy.

I wasn't able to tolerate my beta blocker it may have to do with the fact that I am just too little and my nutritional status I don't know.

I found it difficult to eat for a long time but enjoy boost supplement, cookies, bananas, cheese, eggs, and I sprinkle in meat and vegetables when I can. Every time I get on the scale at the doctor's office and I'm a steady 100 I jump for joy.

I always worried about my weight but I don't care anymore. If I could have a little flab and feel good I would consider it a success.

I hope things do get better and I don't want to give horrible advice and tell you to quit taking all your meds. But my body just doesn't tolerate things well it seems to make me worse so I can relate.

[Simmy]

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

[Chaos]

Maybe it was that pink flamingo / yellow sailboat thing (private joke).

I think you hit upon the answer. Having been trying to correlate barometric pressure, daily weight, hydration, salt intake, exercise level, and every other possible related issue... I've pretty much decided you had the right answer with this one all along. My symptoms seem to have NO relation to anything I'm tracking so far.

Sorry you had such a bad day. Been there, done that.... and it stinks!!! Hope you have better days soon.

[lieze]

Well the best thing you can do is let your doctor know what happened when you go to your appt.

The way I have always figured it with all of the effects the POTS has on me is that my body is always compensating.

In your case your body is compensating but it is also having to fight against the effects of the meds which is making it that much more dramatic potentially.

I did not tolerate a beta blocker it made me feel better most of the time and blocked the effect of the adrenaline on my heart but it made my bp go too low and was throwing me into big episodes-I happened to be out in the car with all four kids when it happened and had to grip the steering way all the way home-I was hyperventilating and was just trying with all my might to make it. I think if I had to do over again I would have just gotten out laid on the ground and called for my husband to at least get the kids.

The other "pill" that did this to me was Buspar. I thought I was doing myself a favor because I could feel my anxiousness to take a tiny bit. I ate a meal of spaghetti after small portion bad mistake the carbs and the pill bottomed me out.

I got black went flat and went into a myriad of symptoms with my heart turning cartwheels.

The combination of the Buspar and the food did me in. To a normal person that would just sound nuts but it has just taken me a while to figure out what I can do and I can't and it feels a bit neurotic.

We are all different Simmy but for me my cardiologist told me that an antiarrhymthmic for me is more dangerous than the arrhythmia itself and my last king of heart just showed sinus tach. My heart feels often as if it's out of rhythm but I think for me it is just a feeling.

So I take meds very very cautiously because of the extreme reactions that I do have. Anything that lowers the bp at all is almost a no no for me and why I've been so reluctant to try the Paxil as desperate as I've been to take something that would help my nerves.

I have always been way too skinny too it has to be our metabolisms. I don't think I can help it either and when I did gain weight since I am a woman it went all to my hips and thighs-it doesn't seem to spread itself out at all and it just made me feel horrible.

I do try to focus on the protein thing and since they said I was actually into a state of malnourishment based on my labs I'm trying to eat whole foods. I looked it up on the internet and anything that is complete in amino acids I try to eat like bananas. If I eat them regularly I do feel better.

If you can follow your gut and it may get you to a place of feeling better. I know that sounds kind of out there and honestly after going through this for the past year I have times when I think I am just going to go crazy. My mind will just start to race with all kinds of fears and flashbacks and I think I'm nuts.

I notice how tense I was in the past afraid to even relax my body because of the horrible feelings I had in it. I still notice I am tensed up always applying that internal girdle I can't stop.

All we can do is try to have faith that we've gotten through all of the other episodes and we will get through the next. There are things we can do like just lay down where we are at to get the symptoms to stop. And just take one day after another hopefully having some good enjoyable times and trying to get through the bad ones.

Good luck and let us know how you're feeling and how your appt goes.

[corina]

simmy, i've tried to read everything, which was a challenge so maybe i missed something but i wanted to ask why you're not on a beta blocker. during my tilt about 8 or 9 years ago my hr came up from 60 (flat) to more than 180 (standing) that's when i felt so ill i couldn't check anymore. but hubby told i came close to 200. my doc prescribed bb's as he told me i could get in danger of getting a heart attaque (when this happens on a regular base it could cause damage at the heart muscle). i've tried to get off the bb several times but didn't succeed (so far) as heart rate raises too much as soon as i get up. i'm on 200mg/24 which is the lowest to work with and feel more or less comfortable.

hope your doc can help you,

take care,

corina : )

[futurehope]

Simmy,

Stand firm on your belief that you are justified in receiving disability, and I'm sure the SSDI will come through.

BTW, on a good day, I avoid squatting or bending over. Obviously, I despise picking things up from the floor, or doing anything of the sort. It's part of my condition.

I have gone for months getting breathless from standing, and unable to sing in church. Then, mysteriously, I'm better. Unpredictable for sure.