iheartcats

I sent you a PM. I had a similar experience (but fortunately stayed out of the hospital...but missed 2.5 days of work I can't afford to miss which has led to further stress...)...

But no response. After calls/emails/etc. I only got an email from her secretary.

At this point, I think I am going in for my final lab results, paperwork, and going back to my EP who called me back the next MORNING. He's so much more responsive and is familiar with POTS. I'd rather have someone on my side/willing to try treatments then someone I see for 20 minutes once a month and can't contact in a severe emergency. (I was having very abnormal symptoms and rates above 160 just standing which is not usual for me).

Firing a doctor is hard, and no fun, but you MUST put yourself first.

I work in Marketing, but now at a place without trade shows/travel which I just couldn't do...but while I can do my current job, I do get fatigued and all my time off is POTS related so I never get to take a fun day or vacation day. That makes it really, really difficult. And if those run out...then what does one do!

Overall it seems there are very few flexible, understanding work places and those that have found them are very blessed.

I really wish everyone would understand we'd rather not have special accommodation/hours/etc...that we'd be thrilled to be healthy and work away and have a normal life.

This is all very helpful...I'm just practicing my poker face for the first meeting.

It's hard to keep emotions in check. I did talk to my cardiologist and he will write letters if I need them. One thing he notices with patients with POTS and other similar diseases is people often think they aren't sick...they look fine so they are just playing the system/it's all in their heads/etc.

That was very depressing to hear. I'd work 40+ hours a week and go to work 'extras' if I felt 100% again! It's not that I don't want to...but hardly anyone understands that.

Thank you for this. I have not heard of this, actually.

They initiated the meeting, but I will not have it until next week. I won't bring this up, though. I want to hear what they have to say, digest it, (come back here for advice?!)...and go from there.

I wish it would just be over with. I hate the waiting!

I truly thank everyone for their help.

One unfortunate thing is I'll not be here 12 months for a few more months. I was at my last job for years, of course, without a problem!

So I don't have much 'job protection' and that does really scare me. I don't know if there is anything I can do in my case, then, because FMLA hasn't kicked in.

I'm really at the graciousness of my employer, then, and may just have to 'suck it up' at least until my year sets in?

I really will be careful about what I say in the meeting then...oh my.

I've had to take about 1/2 of my time off already and it's not even May. So now I have to meet with HR about how we can handle my upcoming appointments/time off for illness/cardiac rehab? etc in a fair manner.

1. I've read that FMLA can be taken in small increments The FMLA Web site mentioned you can take it for days for 'ongoing therapy/treatment' which, I would presume, includes Cardiac Rehab/doctor follow-ups/etc. This would give me more protection with keeping my job.

2. They've occasionally let me work from home when I'm exhausted (as I'm much worse in the AM), but this may be going away. I probably did it three to four times a month and it helped tremendously. But without this I'll be dragging myself in on 'bad' days and am afraid I'll just get worse and worse. But I need my job, so I may have no choice...just drag myself in no matter what.

3. They don't know about part-time (say 4 days/week work). This is a possibility, but I don't think it's highly likely. They also have to discuss if the workload here could handle me at 4 days week for 3-6 months (ie, can they accommodate that and balance everyone's work loads?) So that's scary. If it comes to that I might not have a job if I have to go part-time!

4. They mentioned using all my Paid Time Off and then going for non-paid days (instead of working from home) when I'm really sick. I wouldn't be able to do it much (don't want to push the limits) but at least I'd keep my job. I did mention I have one family event I have to go to this year...and they seemed understanding about that.

Any suggestions of what to go into HR with? They are going to tell me what they need from my doctors (and my doctors are aware of my very bad days, fatigue, etc).

Thank you so much. At a time when I don't need stress this comes up.

Some days are far worse than others (I am usually around 120ish in the AM, but sometimes 130 and 150-160 on really bad days in the AM).

Cat-Lady, I'm still new to all this and trying to figure things out so sorry if this is a silly question but when you say 120ish in the am or 130 or 150-160 do you mean as you move around trying to get ready in the morning? Or just upon waking? I'm trying to get a sense of what is a normal hr or abnormal hr for daily activities. I easily go up to 135 just slowly wiping down the kitchen counter. It doesn't feel good so I'm assuming that's too high. Is that right?

My brain is really foggy right now so I hope I'm making sense!! Thanks.

Not a problem.

When waking up it's usually 'decent' because I'm lying down. Maybe 72-85 bpm depending on how dehydrated I am. Sometimes when I stand up it pops right to 120. Just standing. When I start getting ready it'll go to 130-160 depending on the day. I try to get ready slowly, stretch, drink some water or skim milk...but the morning is always bad no matter what I do.

Before POTS I used to get ready with no issue so I assume my heart rate was less than 100. You always hear 60-100 is 'normal.' I didn't feel weird getting up and ready back then, or notice any fast beats. Running up and down stairs and stuff it'd go up, but that was 'normal.' Going to over 110 just wiping a cabinet or putting on mascara is 'not normal.'

I've had a hard time getting a grasp of this too. Because when I go to my specialist I've been up a while, got ready, so it's usually 100-120...doctors never see us at our 'worst'...those first couple of hours in the AM!

But when I'm cooking it can get to 120-130 at night...standing, heat, etc. and that's not normal. Just like wiping your cabinets...135 is too high.

I hate POTS.

My ANA was previously slightly elevated. I got sent to a rheumatologist to evaluate for autoimmune, and they kept bringing up lupus. Exploring this is how I ended up with my lyme diagnosis. With treatment, my ANA seems to have returned to normal.

Did Lyme disease cause your POTS, too? I have vaguely heard about that (but I don't remember ever being around ticks, etc. so they've not brought up Lyme with the abnormal ANA). Should this be something I should ask the doctor to check out to be safe?

I was actually thinking of posting this exact same topic...I seem to do much better in the late afternoon/evening than morning/early afternoon.

I can no longer jump out of bed and get moving...I try to move my legs a bit and 'wake up' for about 20 minutes or so. Then I take my allergy meds with skim milk and slowly get ready. Some days are far worse than others (I am usually around 120ish in the AM, but sometimes 130 and 150-160 on really bad days in the AM).

I know people have suggested to look into medications...I've been putting this off myself but may finally have to do it. I struggle to make it to work every day on time and it's a little easier now that the winter is over...but winter will come again and just scraping the car can ruin my day!

I've wondered if mornings are so bad because of the dehydration over night...I should try to 'drink' when I wake up during the night. I already have to get up to bathroom and that is horrid because you never get a full nights sleep! And you have a baby to deal with, too. Do you try to push fluids? I find it hard...but I try. And I still have a Latte in the AM and sometimes a Coke Zero at night. I've tried the no caffeine and I was worse. And I recently read a study that you still get fluids (it's not a total waste). But I'm no good without my morning Latte. And since it actually helps a bit no doctor is making me stop that, thank goodness.

Good luck and thanks for posting this - I'm glad the morning-issue is shared by others and hopefully people can give us more tips.

Hi,

We have some kind of portable AC here that are on wheels and have a tube that you put in the window. You can wheel them to a different room like the living room in the day and the bedroom at night. Or you can buy a bigger one that cools down a greater area.

I think 5,000 BTU is good for about 400 square feet and 12,000 BTU is good for an apartment.

I have a big house and I use 3 - 5,000 BTU and 1 - 12,000 BTU. The small ones are for the bedrooms and the big one is for the main floor.

It is a good idea to have a note from a doctor saying that you need the AC for health issues.

Oh that's good to know! I'm hoping mine works well, then.

But yes, I think I will get that note on my next visit...she really thinks it is not a luxury but mandatory for my condition. She was rather insistent about keeping cool this summer.

Hi,

Are you allowed to put your own AC in your own apartment?

Hello, Ernie,

The style of windows we have do not allow for a window unit. I have purchased a 'portable air unit' for the bedroom. It just arrived this week and my husband has to work on it. I hear they only work well in one room, with the door closed, so I am hoping I can use it at night.

I suppose if I get any complaints for this (I pay electricity) I can get a medical note from my doctor as she said I had to have air of some sort. I've never had to be overly concerned with air conditioning before...and now I do. It's hard adjusting to POTs.

I had an ablation and it 'fixed' the SVT...but I was told and read some do come back in some people...or there is one that wasn't ablated that gets worse, etc. Good luck!

It's starting to warm up....unfortunately the Central Air in my building doesn't get turned on until June 1 so May is very trying and with POTs (didn't have it last year)...well, I am sure it will be worse. And my workplace isn't that cold either (of course I get the office building that's not freezing...my friends complain about theirs!).

Do any of you have tips for coping with heat?

I'm already upset I probably won't be able to clean much in May (and what a thing to worry about...but it's the little things that do get to you).

Any little tips to help myself and others get through the heat would be appreciated!

I just had a second test and will have results during my follow-up in a couple of weeks. Lupus can have a genetic link, I've been told, and that's one thing that can 'bring about' an abnormal ANA.

There are other things, too, and it seems some people have an abnormal one with no other symptoms usually associated with it (lupus, rheumatoid arthritis, other syndromes).

You think it'd have to be related to something, though...

I am going to have this test too - I thougt you could drink water even though you were fasting...?

I was allowed in moderation...but I had such a horrid stomach ache after drinking the glucose for a few hours I couldn't really drink much...too nauseous. And I had to keep the glucose 'down.'

Thank you everyone. Actually had to 'nap' for the first time in a long time...but am plugging along and am tired...but feeling a bit better.

Just really more wiped out than usual.

I'm relieved that's it's likely due to the test, though, and not some horrid worsening of my POTS!

Thank you SOOO SOOO much for all your help/advice/input.

Hi,

When I have more than 3 vials of blood taken and I have to be fasting I need at least 1L of IV saline and the more vials they take they more saline I take. If I don't have saline afterward I faint for days every time I stand. So I have an agreement with my doctors to have the saline.

Ernie -

Thanks for the response. That makes me feel 'better' with this being the worst day I've had with POTS. The Gatorade is helping a little...but I'll have to talk to my doctor. 24 vials of blood was a bit too much for me, I think!

Thanks for asking about me- I've been kind of avoiding the board lately because I've been so discouraged, and basically work is taking the little bit that is left of my energy. I'm working 6 hour days now, and it has been VERY tough. I struggle through the day to day stuff (tired, weak, headache, shakiness, etc.), but this past Sunday I had a MAJOR crash. I woke up and I could not be upright at all without getting horribly dizzy and feeling like I was going to die. I'm gradually "recovering" from that, I still feel a little off, but at least I can get up and try to manage.

Seeing a cardiologist tomorrow, not that it will do me any good. I am so disenchanted with the medical field right now. Nobody believes that I am really sick, and it is so hard to explain to them that I may look fairly normal, but my illness can be truly debilitating at times... people just don't understand. Even the people who were my support system previously seem to be falling away. I sometimes wonder if my husband even believes me... I would give anything to have my "normal" life back.

Sorry if this post is kind of negative. I'm just in a bad place right now...

Mary

I think you hit the nail on the head about looking 'fairly normal.' Only people really close to me (and only some of them) understand just how bad this can be. I push myself - and it sounds like you're doing the same - because I really don't have a choice. I just keep thinking it can get better. It has got better for others.

What type of work do you do? Is it physically demanding?

Are you on any medications? I'm not yet so I can give no advice...but they want me to try some. That scares me, but I guess it'll be worth a try to get better.

Please try to stay a bit positive...thinks can get better.

Hello, All,

Yesterday I went and had a 5-hour Blood Glucose test which was rather awful. All I had was a little water until 4pm in the evening and they took approximately 24 vials of blood over 8 draws.

Of course I was feeling dizzy toward the end and my heart rate was around 116 on standing. It's often 100-140 in the AM so that wasn't surprising...but it usually hangs around 120 when I get up before calming down a bit later in the day after water/salt/etc unless I'm running around or up/down stairs.

So today I wake up and it's 160. It was hanging 140-160 standing and around 100-110 sitting down. It's usually not that bad for this long.

Of course I had to run errands so I'm feeling so wiped out (and still have to get the cat to the vet! what a day for this)!

But...it's my worst day in months and the only thing different was the extensive blood draws/testing yesterday. It's Saturday so I can't call the specialist - my primary care physician probably wouldn't tell me to do anymore than what I'm doing (water/salt). I assume I'm also 'dehydrated' from the fast yesterday so had G2 and am now having a Latte as a dose of caffeine can 'help' boost my BP and am trying anything. It ***** being 'tired' at 11am on Saturday!

Has anyone had a similar experience?

Mine have always come back abnormal from 1/160 to 1/640 at various times since the dysautonomia/pots. I have also had an active EBV panel during all this and I think they are somehow related. Since my tilts have stayed the same over 2.5 years they feel this is why I have the dys/pots, they feel post-viral and not a progressive disorder.

Well that is actually 'good to hear' - it looks like mine were 1/160...and now they want to do another ANA test and a few more other tests to rule out or diagnose conditions that cause the high ANA count.

I'm trying to stay positive now - it's reassuring to know it could be post-viral (which CAN get better, I keep hearing) and that could be a possibility for the abnormal ANA.

The doctor tried to reassure me not to worry at this point - there is no need until all tests are done and we know what we're dealing with. Still, the mind wanders!

Thanks for all your replies!

Has anyone had an ANA test done for POTS to see if it is a secondary condition caused by a primary condition?

I looked up that an abnormal ANA could be: Lupus, Sjogren's Syndrome, Rheumatoid Arthritis, Fibro...have you of you experience POTS from one of these (or other) primary conditions? Have any of you had an abnormal (high) ANA test?

And is Shy-Drager a true concern for people with POTS? I've seen this referenced here and there...

I'm still going through diagnostic testing all this is so daunting!

Thank you all for the kind words. It is really nice to have people who do understand what I'm going through. Since I have no choice, I'm going to give it a go, maybe things will be ok.

Morgan- I'm sorry to hear about your son. Unfortunately, in these kinds of situations, the decision making power is almost taken from us, because we need income to survive. We can't decide to remain off work when we are too ill to work, because we cannot afford to live with no money. It's a kick in the pants for sure. I'll keep your family in my thoughts, maybe something good will happen from this.

Mary

Just take it one day at a time - when I get through a day I'm very happy and it encourages me to keep trying. Believe me, some days will be much better than others, and some much worse.

I wish you luck.

I went without any caffeine for a month - while I did sleep a bit better, it didn't change my POTS symptoms at all. Now I have it in moderation, a latte once in a while in the morning, Coke Zero once in a while, but try to have it before noon.

Thanks for all your insight - it helps just being able to talk about things.

It's so hard when you remember it was no big deal going to work, then meeting friends, going out, etc and now it's a struggle to get through the work day and cook dinner!