Really Need Some Advice/help For Heart Rate In Am

[iheartcats]

Unfortunately, my workplace moved and has no parking. I have to walk a few blocks now from a garage and it's very hard...of course no one else has an issue at work so I'm dealing on my own!

My heart runs in the 140s to 150s during the walk - I do all my normal stuff beforehand: Get up slow, take Midodrine, drink, and a bit of Latte that usually helps. Mornings are just bad. In the evening it can be in the 120s/130s on the walk but that's more 'normal and tolerable' for me.

I'm hoping I just start getting accustomed to it - but at this point I am so exhausted by 1 or 2pm from this new extended morning walk. And freezing winter isn't helping...but it won't be nicer out for a couple more months.

Any ideas for me...or is there hope I'll adapt and it will at least get tolerable? This illness is so frustrating. No one at work even understands why I'm so down about the move and this extra huge stress of getting to and from my car.

[Ernie]

Hi,

Could you make an arrrangement with a co-worker to meet them in the parking lot and ride back to drop you off in front of the building before they go park their car?

[yogini]

Have you tried beta blockers to control your HR?

[flop]

You need to talk about this with your boss/manager. Let them know how this move is affecting you. Mention "disability" they should be obliged to help you come up with a solution to the problem (sorry I don't know the US system but in the UK your emplyer has to help or use access to work to get funds eg for a scooter).

Flop

[iheartcats]

Here's the hurdles:

1. We don't get in at the same time, only a handful of people use that lot, etc. so there's no one who can drop me off. Plus there are no co-workers who'd even do this there, I am not close to any of them, but at this point it isn't even strategically possible.

2. I cannot go on a Beta Blocker until mid-February. I'm supposed to use Mestinon for a month, which I'm starting next week, and see how that helps. Doctor wants to do things slowly and I should've started Mestinon by now but have had other things I wanted to deal with first.

3. I did talk with HR. All they could offer me was the covered lot. Otherwise it's random street parking with meters/limited parking (and all that is outside and it's too hard for me to scrape my car in the winter when it's exposed). They have limited lot spots (first come first serve)...the rest is find your own/pay meters/move it after time limits/etc. They helped me secure a spot in the covered lot, but it was all they could offer. The few spots at the building are offered in a lotto for those who don't have covered lot parking and I couldn't risk losing the drawing.

So at this point I don't know what to do...maybe if the Mestinon works/doesn't work (whatever the doctor is looking for)...then I can try a Beta Blocker by early February.

This is causing so much stress in my life right now, and it's really wearing me out personally. There's some additional things (why I am afraid to push my luck with HR) so if anyone wants me to PM them let me know.

Thanks everyone.

[dsdmom]

What if - I can't think of the right word here - brain fog? - not apply, umm... qualified! Ok, what if you qualified for a handicap spot? Any chance you could do that? And, if so, is there a spot @ the building that you could take?

[EarthMother]

Do you have a handicap sticker for you car? Where I live we don't have to pay the meter with a blue hang tag.

Even when I was able to work, there is no way I'd be able to walk even a single city block to get to the office.

It's important that you got this documented with HR and it sounds like you did. Make sure they understand that the stress this is putting on your body could cause serious health issues for your Dysautonomia. They may not grasp what you are saying ... but they'll have it in your file should you ever need to take a medical leave.

Do they have any handicap parking near your building? If not, your work place can speak with the city on your behalf to designate one of the spaces as handicap parking. My employer had additional blue spots added to our parking lot when more of our employees required them. (Gee maybe that was a sign! )

I know it's hard to speak up for yourself. But you owe it to your future Self, to take the very best care of the body you have now. All we can do is ask, in a calm, patient and compassionate way (some version of "I know you may not know how to help, but I'm at a real dilemma here and I could use your added input for a think tank on this problem ..."

Good luck, I hope things resolve themselves soon.

[iheartcats]

My doctor faxed me approval for a handicap spot - I've sent that in to the state and am waiting. I hear it takes 2-4 weeks (ahhhh).

I called the city and non-timed meter spots (spots that are all day rather than 2 or 4 hour) can be used by handicap plates. I'll need to see if the tad bit closer spots are on non-timed meters which would be helpful once the weather improves. Can't use them in the snow (car gets covered).

The city said the street spots around my building are zoned. It's two-hour for anyone, nothing they can do about that. They are really streets for resident-only parking.

I'm really concerned about what my options are now...Once I get the handicap plates should I approach HR about a handicap spot at our building? The reason I don't see this happening is 1. we aren't open to the public and 2. the expense and 3. what if someone else wants/can use the spot (I wouldn't know)...it'd be 'first come first serve.'

I'm really hitting the wall, but at least the handicap plate is in process. A building located in a residential area isn't the easiest for a parking solution.

[jump]

I'm so sorry you're going through this!! :(

Fortunately, I don't frequently get tachys as high as 140-150 anymore, but I used to get them daily (also in the morning) and it was EXHAUSTING. There's something about that range -- or there is for me, anyway -- that just takes the stuffing out of you. I can imagine how much harder this is making your day. It's like you're running a marathon every day before work!

Have you looked into disability services in your city? There are often services that will pick you up and drop you off, and they're usually free. It might be a little annoying to feel less independent, but you could just use it while you're waiting for your handicap plates. I have a friend who uses that type of service where I live, and she says it's great.

Also, doesn't your company HAVE to provide handicap parking, even if they're not a consumer business? Where I work, there's one handicap designated spot and two disabled people who need to use it, so they just designated another close parking spot as handicap. I feel like legally this might be required. I'm sorry HR is being difficult!!

I have to say I never found anything besides the beta blocker that helped with the really high AM tachys, besides what you're already doing. Drinking a lot is key for me, but without meds I was still always in the 140 range in the AM. Can you go into work later by any chance???

[iheartcats]

I'm going to have to look into the legality of them providing a handicap spot. I'm almost certain if it's not a legal requirement, they will not.

I can do this in the meantime while I'm waiting on my plates.

I wish we had a service like you're talking about (drop off/pick up). I think that would be an advantage of working and living in the city rather than the burbs.

Do Beta Blockers really knock down your rate? By how much? How long did you take to notice a difference? If it's something that could really help (and boy am I feeling horrible) maybe I can try them after a couple weeks on Mestinon instead of a month.

I thought this move would be bad, but it's much worse than I anticipated.

[Ernie]

Hi,

What about starting the BB before the Mestinon? The BB decreases my HR by about 50 bpm when standing and not much when lying down.

[yogini]

I was thinking the same thing as Ernie. The BB seems like it might address your symptoms better than the Mestinon. And it should settle in your system within a week or two, so you could always start the Mestinon after that.

[ajw4790]

Hi,

I agree about trying the BB first, if your dr agrees... there was maybe a reason they wanted you to do it this way?

Also, I was wondering how you know it is the high HR that is causing all the problems or if the high HR isn't the response to what is causing the symptoms. I guess I just wanted to point out that it may not be as straightforward as that, yes sustained or quick spikes in HR make us symptomatic, but is there anything else going on? I just know that I have learned to listen to my whole body and not rely on that one number.

If your symptoms have increased/you are feeling worse, look at what has changed in that time period? You mentioned there are a lot of other things going on, could stress be wearing you down and leaving your ANS on high alert the majority of the time and not allowing yourself a break? Depending on what all is going on try the basics, making sure you are getting plenty of restful sleep, staying hydrated, eating properly, ensure electrolyte balance, taking meds according to dr direction on a daily basis, take time for yourself to rest during the day, take care of yourself, and try to find any ways to relieve stress that work for you. Also, exercise at a low level as able to.

Also, the latte in the morning is likely spiking your HR so maybe try to not drink it until you are at work or something. It is possible that the caffeine may be doing more harm than good. Remember it is a stimulant and raises HR and is a diuretic, so it lowers your blood volume if you are not replenishing properly.

If in the US they do have to make reasonable accomodations so that you are able to work there without a seemingly easy task like getting into the buiding making you feel worse. They may require a note from your dr. to prove disability and then for you to tell them that according to the Americans with Disabilities Act I am entitled to reasonable accomodations to allow myself the ability to work here without making my disability worse or making it to the point I am unable to work. If they say it is unreasonable then, you may need to consult with a lawyer. Also, does your employer have more than 15 people as employees? If not, ADA does not apply to them.

You could look into talking to the owners of the building or the city (whoever owns the nearby areas) to see about adding more handicapped parking.

Hope that helps!

[iheartcats]

Thanks for everyone's help.

Well, I was supposed to start Mestinon this week - but I'm afraid of starting new medicines. This is an issue I have (fear of new medications)....I wish it wasn't so bad, but it's just me. I want to start it during some time off I have later this month. So it is partially my fault I'm not on it yet!

But, I know my doctor will let me try a Beta Blocker a few weeks after the Mestinon...but one thing we're hesitant about is I have bad allergies and Beta Blockers can hurt allergy medicines, right? At least that's what I got in my research.

For now I'm doing what I can and getting by...and will start my Mestinon, then possibly a Beta Blocker (I have an allergy test later this month to check for serious food allergies as I used to have reactions to Cashews and Almonds).

I also have to look into city code about the handicap spot (once I have my plates, especially) and will see what I can do.

And yes, I do think my symptoms have been worse overall. I've been pushing myself too hard, have some personal-life issues, the economy (as most people), and winter is hard on me. I think even worse than summer.

So all in all it's a mixture, I think. I appreciate everyone's help and will update when I get further info!