iheartcats

Thank you both for replying.

I know we are all so sensitive with dysautonomia, it's hard to pinpoint triggers. I have to remember to take my BP during my bad/flare days to see if there is a correlation.

I was sluggish, tired, etc. too so am glad to know I'm not alone on this one.

I'll keep drinking too as I am sure dehydration is not helping!

I may have to lessen up on the carbs. And I love my carbs.

This turmeric...I think I'll have to get some this weekend. It's worth a try, because this fatigue is horrible! I do hope it's helping you.

My Blood Pressure varies a lot, & my doctor said this is very much related to POTS and as long as I am between 90/60 and 140/95 I usually don't worry too much. Also as long as the top/bottom numbers are 30 apart I usually feel 'ok.' I know 40 is preferred, but not always possible. I guess mine usually ranges from 30-40ish apart.

Anyway, today it was only 18 apart and I was feeling really, really tired and wiped out. I'm trying to force liquids and it's now about 20 apart and am feeling a little more alert, but worn out. I was very tachy, too. Over 140 sitting.

Do any of you get this symptom? Does dehydration add to it?

At what point do you worry? When it gets to only a 10-15 difference for an extended period of time?

I was really surprised how crappy I was feeling so forced myself to my machine and got the low-difference readings.

Yeah for Ernie.

Purple is my fave color so it could be worse, right?

As many of you know. I'm paranoid about taking new medicines/supplements.

Is Turmeric pretty benign with other medications? Obviously it must me with allergy meds (Mack's Mom!)...I also take BCP and Midodrine and am starting Mestinon.

Thanks!

Anyone found anything to help alleviate the sometimes soul-crushing fatigue?

I am having one of those days where I am so tired I just can't function right. There are days when I honestly fear for my job because I'm so tired. I always manage, and I'm good at what I do, but I there's nothing I would rather do more right now than curl up under my desk and sleep the rest of the afternoon (unfortunately I have a hard time taking naps so even if I could that wouldn't help).

I was always pretty tired to begin with, but since quitting caffeine and going on the beta blockers it has been just horrible. I'm still working on getting my hydration and salt levels up so I will probably feel better once I can manage that consistently, but do you have any other tips? What do you do to get through the after lunch slump? That's always the worst for me.

Thanks.

Wow. I had the same type of day as you and was going to post a similar question. So I want to thank you - it's nice to know you're not alone.

I feel for you with the caffeine. I still can have my AM Latte/Tea/Coffee (one drink, usually). If I'm feeling really wild, I sometimes have a Coke Zero in the evening (rare!).

But...as with you, naps don't help me a whole lot. If I can even nap. I somehow force myself through and keep working (meetings can be rough).

I think I'm eating too heavy/carb of a lunch lately so have to look into that. Do you usually eat a big lunch?

I also wonder once the weather is more agreeable if a short walk will help after lunch. Sometimes it gets the blood somewhat flowing! :/

Let us know if you find something that works for you!

At first I couldn't believe what horrible effects the flu had on me when I first got POTS - I thought I was going to not make it, but I did. Minor colds make me feel horrible. A bad illness? Oh my. You feel like death. (I must say I am happy my flu shot 'worked' this year - last year remember the shot didn't match the outbreak)? So if you can handle the flu shot (and I have been able to, thankfully) it may give you peace of mind knowing at least you have a level of protection.

But yeah, when I get the bad flare-up days out of nowhere, just POTSY, I think I'm going downhill. Even though for most people POTS isn't progressive. So I have to remind myself that. I am pretty sure I did not have this as a kid so my chance of this being progressive are very, very low is what I keep telling myself.

Reminding myself I've been through these symptoms before and made it helps. I'm dreading the upcoming warm months, not healthy and I shouldn't worry until I have to, and I'm trying to get myself to stop this. But I know it's HARD.

Thanks for posting this. I'm glad I'm not alone!

Oh sorry to hear what you're going through. Medication issues are the worst (I HATE taking new medicines. It's both scary and stressful for me to take a new medication). And our sensitivities with Dysautonimia mess with medicines - we have such a harder time than 'healthier' folk.

I hope you get things straightened out - if Ambien isn't working - wow, that stuff pretty much knocks me out on 5mg, but sometimes I have to take 10mg when I am really wired AND not eat for about three hours before taking it. It makes a huge difference on effectiveness for me (emptier belly). Can you ask for doctor about trying a 10mg?

Mental health + Physical health are stressful to have to treat together. I feel for you. I went through some very difficult family things last year and that on top of my illness was traumatic. So please take care of yourself and know there are others out there who at least can relate to what you're going through and things can get better. We all have our bad days/flare-ups/etc so sometimes you just need to vent.

Sometimes I wonder how I keep going, but I do. And I think a lot of people feel the same way. You just make it somehow.

I miss being healthy! I really took that for granted.

Yup. My Daily Latte helps me, especially on days I work. It doesn't make my HR any worse. I did a month-off coffee/caffeine and felt horrible and my tachy STILL varied just as much. Coffee helped morning BP + Brain Fog more than it harmed anything.

I think I have a tiny cold - and I mean just a tiny little off feeling. Something that would be mostly unnoticed before my POTS. But I barely got through laundry today - my rate hit 190 coming up the stairs + extreme dizziness. And I stand and my heart flies from 80s to 140s. And I just feel CRAPPY.

I'm so annoyed this condition is so sensitive to everything. It's so frustrating. I'm trying to live my life as best as I can, but I am exhausted. I am so glad I didn't have to work today...do you ever wonder how you make it through some of these bad spells? Is anyone else just totally frustrated?

When was your appointment, if I may ask?

I have an appointment toward the end of March and I've not heard anything from them yet.

My PCP and EP were 'banking' on this appointment as I've not been feeling well the last few months...ack.

Do you know for sure all March appointments are cancelled?

Cat Lady, yes they are widely used in Europe. If you see a gynae about heavy/painful periods one of the first things they suggest is a Mirena. I have older friends who in previous times would have been offered hysterectomies for heavy bleeding and they are now trying Mirena, a much less drastic option.

I have a whole bunch of leaflets from the family planning clinic. The Mirena leaflet says to take painkillers an hour before your appointment. It also says that they sometimes use lidocaine gel on the cervix.

Flop

That's very helpful. Sometimes, in the States, BC isn't talked about very openly. It's unfortunate. I do have heavy, painful periods (since my teens) so I've been on BCP for about 14 years! I'd love an alternative, so I will mention all this to my doctor and especially the lidocaine since I've never had children. Thank you so much!

I was sleeping 'ok' for a month or so...but the last few days it's been bad. I feel wired (and have had a cold which caused me to be very tachy and yucky feeling) and tired at the same time now.

I used to take Ambien as-needed (probably 4-6 times a month) but haven't in about two months. I may take 1/2 pill tonight (5mg) because I'm to the point where I feel wired but extremely fatigued. I know not sleeping is NOT good for us (my doctor says I need rest, and she'd rather me take an occasional Ambien/whatever works if it helps me rest).

I was afraid that Ambien was causing tachy flare-ups the next day, but someone pointed out was I taking it already when I was feeling bad? So I'll give it another go. If I am worse tomorrow than today, then I know it's probably not for me except in an extreme situation.

I hope you find something that works. I've tried Xanax (smallest does) and didn't really like it. It was 'ok' but not for me.

Maybe bring this up to your doctor. I know our sensitivities are horrible, but the good thing with sleep meds/similar meds is they are short acting. You may have a bad day or so and never take it again, but if it works, then that is good news.

Flop -

My doctor said they are widely used in Europe...so I'm thinking I may go with the Mirena method. I see her soon and will discuss getting an appointment for later this spring.

Thanks for your input, I'll ask about the analgesics too so I don't have to tolerate any more pain than I must.

All4Family -

My hives are so inconsistent except in a hot shower. Always get 'em all over, but they aren't itchy. Just hot. And go away quickly. Otherwise, they'll pop up here and there, and I can eat the same thing for 5 days and get hives one of the days. I was tested for food allergies and they came back clear (skin test).

I'll have to pay attention to the tiredness and my next period (hives). Never even thought about that.

I found out my mother was RH- (I was the first so it was ok) but she had to get shots with my brother and sister. Now my sister is showing POTS symptoms (high heart rate after standing for a minute, we did 'tests' when I was home for XMAS - LOL). Anyone else have this themselves or a mother with this issue?

You wonder how this all ties together. But it has to somehow! We all have similar bizarre symptoms and my allergist wasn't surprised with my symptoms, rare, but nothing he hasn't seen. I just keep remembering him saying how he's seen them go away as fast as they come. Maybe I'll wake up one day and be healed! LOL

Thanks for the info - my gynecologist says it has the hormone that won't 'hurt' (progesterone)?

At least, unlike Depo, it COULD be removed. My cycles are too horrible without any type of control...so I'm being optimistic that Mirena would be better than nothing.

I know it hurts. They've warned me. I guess I'll have to suck it up and hope it lasts five years. :/

Glad to hear people have similar experiences/similar spikes.

I finally broke down and ordered a BP Monitor that holds the data, so I can monitor over time. I can't do it well at work (people look at me funny and I swear this makes it a bit higher! I know! I shouldn't care)!

I could not get in touch with my doctor (Friday late afternoon) but made an appointment for Tuesday. I'm just going to go back to 5mg/2.5mg instead of 10mg/5mg twice a day to get me through until Tuesday. I'm hoping that's 'safe' since Midodrine can be used on an as-needed basis (me included in case I need one for evenings).

Glad to know my spikes aren't horrible and that normals get spikes with exercise.

I've not noticed this - I will have to pay attention during my next cycle. Are you on any type of birth control?

I don't know how hormones play into allergies...but I would assume those could cause allergies to flare since they make my POTS symptoms go crazy. And my periods make me much for fatigued than before I had POTS (they were always bad, and still are, but now there's more achy body fatigue).

The allergist I saw said he's seen random hives for 'no reason' and never could find a reason, and some people have them for a few years and then they are gone as fast as they came. But his gut feeling it's something to do with the autoimmune system/diseases.

And don't more women get autoimmune diseases than men? And women are the ones with more hormonal issues. There must be a connection somewhere.

My gynecologist has suggested Mirena since she's so worried about my blood pressure fluctuations and being on medicines that can increase blood pressure. I agree this is a fair concern.

Mirena is shown to reduce and even stop periods. I am on Seasonique now as I cannot tolerate a monthly period with POTS. At all. I don't think I could work full/almost full-time any longer.

What are your thoughts on this? I don't think I'd be able to do it for about 3 months (time off - they say a day or two but I know how my body works and that equals a week off + monetary reasons. I've already spent $150 on BCP through May and both of those reasons are why I can't really get it done any earlier). I'll talk to my gynecologist and see if that's realistic (but I am afraid it may be to go off of or reduce Midodrine until then).

Any experience you've had with IUDs would be appreciated. I don't want to go with Depo as it's not removable. Worst case the IUD is.

Midodrine works ok for me at twice a day (10mg AM, 5mg early afternoon). A really bad day I'll take it in the evening, but that's usually too much on my system.

The last week or so it seems to be raising my BP too much, though. I was hitting the warning zone from my doctor (which is 140/95)...I was 120s-130s usually around 130-138/90-95. I even had ear ringing, which is unusual.

I've contacted my doctor and will go see my EP on Tuesday...but has anyone had this? I have had a mild cold all week and with POTS it could be just my system out of whack, or my system out of whack + Midodrine making things worse. You know you can never tell for sure.

Can a medicine just start working differently, or is there probably an outlying cause?

And I'm really concerned about the high blood pressure because I am on birth control and my woman doctor does NOT want me to have high BP while on it, too much risk for a stroke so I'm concerned. I may just stop taking Midodrine until I see my EP Tuesday and see how I do.

I am so frustrated!

Mine is often 120-140 doing normal things (which would probably be 80-100 for most normal people).

I can usually tolerate up to 160 'ok' for short amounts of time.

I don't know my target rate...220-age = about 190 so I guess that's a good estimation. When I'm carrying things upstairs it gets the worst (around 180s) but it usually starts to go down once the stairs are out of the equation.

I do wear a heart rate monitor most days and I find it helpful. If you get in the high ranges (170-200) it's there to make sure it doesn't stay that way. From what I understand, getting high rates during an activity/for a few minutes here and there, isn't that bad as long as you have a healthy heart. Anyone else been told this?

Let us know what monitor you go with. I use a Polar and I like it.

I understand your concern about medicine. My doctor told me I'm so stubborn about trying new medicines, but it makes me nervous. I can't help it. So I get you and wish you good luck with this.

I get hot flashes when I overdo things. I feel like an old lady! It *****!

And...my heart rate is usually 100-135 doing laundry/dishes/walking/etc. It spikes to 150s sometimes. And stairs/more exertion make it hit around 180! My doctor has said this is typical for POTS....and I can't take a Beta Blocker yet because we're sorting out other issues. And yes, it exhausts me sometimes. Hard to get through a day of work and still have any type of life.

Awesome. Let us know how it goes/what you find out!

Hi,

He will probably read the medical file you bring him, explain you your disorder or show you a presentation on his laptop. Then you can ask him questions.

He is an exceptional doctor. Good luck and keep us posted.

Thank you Ernie. I can't wait to talk to him and I'll let everyone know what I find out.