jjpots

I got the o.k. to add another 10 mg pill after lunch and I can even add another without checking in with them. After the 30 mg a day I think I have to check in again so hopefully I don't need to go past that.

Jen

A question me and my husband keep wondering is what are the long term effects of a heart that is tachy much of the time? They say pots isn't life threatening and yet cardiomyopathies can be caused by prolonged tachycardia. Makes me wonder if mine was caused by that or by my pregnancies.

Je

I've had the 24 hr holter and the event monitor in the past but that was after I was already diagnosed.

JJH

Thanks for the info. I've never been told what kind of pots I have.

Jen

My recent dr. visit report says during Valsalva there was an exaggerated phase 4 with a marked pulse pressure compression. I tried looking up stuff about valsalva but still have no idea what it means. Any idea????

Thanks,

Jen

Thanks for the info guys! I guess I never thought of just waiting to send the recording until no one is around or until I get home. I've never heard of the other things. I'll have to bring them up when I go in next time. I'm going in for an MRI of my heart on Monday so my cardiologist can check the scar tissue I have from my previous cardiomyopathies. I wonder if that would be able to answer any questions about those weird rhythms???

Thanks again,

Jen

I see Dr. Low at the Mayo.

Jen

O.k., maybe I have a little brain fog but is that saying that people with autonomic dysfunction my not get a fever as easily???

Jen

I do get winded easily too, steps are tough and the worst is getting ready in the morning. Seems like mornings are always worse anyway and then to have my arms up for drying and curlig hair really gets my heart going. I've had to go and get a bar stool to sit on for getting ready in the morning when is really bad.

Jen

I did think about that but I couldn't really do an event monitor while at work because it's too fast paced and I don't hink I could keep calling in the send them every 5 events. Plus, my work doesn't know about my "issues" as I call them and I would like to keep it that way. The problem with a 24 hr. holter is not every day is a bad one so how do you decide when to do one? Do they have holters that are more than 24 hrs?

Thanks!

Jen

I started taking it an hour before I get out of bed too and seems like that helps for the morning. I put a call into the neurologist that I saw at the Mayo because she wanted to know how I was after two weeks. I had to just leave a msg. but I asked if I could take another 10mg around noon since it seems like it's getting fast around lunch again.

Does your body get used to the med and then stop working? It sounds like some of you have been able to stay on it for quite a while. The doc also said the med might cause nightmares. Have any of you had experience with this? I've had some weird dreams since on it but not nightmares.

Jen

I had 3-4 days in a row when I had some really weird arrythmias. I was wondering if this is a POTS thing or if maybe my cardiomyopathy is acting up. I think everyone feels those weird skipped beats or occasional "heavy" beats but this was different. It lasted for much longer over 1/2 hour and they actually made me jump a few times because they were so "heavy" and irradic. I had my husband put his hand on my chest and he felt them too. Like I said, it was different because of the intensity and the duration.

Anyone experience something like this?

JJH

Thanks for your input. I haven't had any problems with my stomach with this one but the mestinon was a killer to begin with. After a year on that one I think I'm finally used to it.

Good luck to you too!

JJH

The Mayo neurologists just added propanolol to my mestinon rx. It seems like it works for part of the day but then the tachy comes back. I'm only on 10 mg now. Anyone else on this, what dose are you taking and does your body just get used to it after a while and then stop working?

Thanks for any info.

JJH

Is Polar the brand name of the watch? Where can you buy them?

JJH

I am in a trial for it through the Mayo right now. I started last Dec. I think it has helped but I've lost 7-10 lbs. that I didn't really have to loose on it. The stomach thing was a killer until I figured out that I had to eat before taking it. I used to take it with a meal but seems I need to get the food in my stomach first and then I'm o.k.

I think it is suppose to help things to constrict and therefore help with the pooling in the legs/stomach.

JJH

I have mild mitral valve prolapse and have had 2 post pardum cardiomyopathies.

JJH

Well, saw the doc. he's not really sure what sure what the sore/ bumps are in my throat. He did some research on the internet and talked with another doc. He came up with something (never heard of it before) but it's a virus so the best he could offer was some pain meds. He wrote a note to my work saying he wants me at home resting until Thur. He wasn't really sure about the leg pain in the calf but didn't seem too concerned.

I guess I'll enjoy my "days off" and rest with the kids.

JJH

I haven't talked to the docs yet but I'm thinking I will need to.

Thanks,

JJH

I guess I mis-spoke, I'm on 60 mg 3 times a day. The problem I've had is the stomach stuff. Sometimes I'm just not hungry and other times my stomach get sick when I eat. I do think it's been helping, for the most part, with my tachy. Since I just started a new job I'm scared to have them mess with my meds in case I get like I was again. I would not be able to do my job the way I was before taking this.

JJH

I too have night sweats but I was assuming it was due to the mestinon that I am taking. I have had it a handful of times since I started the med. in Dec.

JJH

I choose the sudden onset with no prior history but, I had an episode of some sort of viral sickness during my first pregnancy and it was about 2.5 years after that I was dx. so who knows. Also, I have brown hair, brown/green eyes and fair skin.

JJH

Thanks for the advice. I do not think I was/am dehydrated. I think I am actually drinking more to try to sooth my throat. I did find an urgent care that is open on Sun. I'm just debating if I should wait until I could hopefully see my doc since I don't think they would have a clue with the pots how it all goes together.

Throat pain still there today though along with the pain in my calf. I'm bummed because my family and I were going to see the Blue Angels at an air show in WI today and now I'm sitting here on the couch while they are gone.

I hate to think of missing work tomorrow too because I'm new at my job and worry what they will think. They don't know about the pots and I don't want them too so hopefully there won't be anything that needs to be discussed.

Thanks again,

JJH

O.k., so I had a very "potsy" day on Fri. I was out of breath from my tachy to the point I was having difficulty talking while seated. By the end of the day I was exhausted, had a headache and started noticing occasional leg pain in my right calf. Oh yeah, the same day I started with a sore throat.

Today the headache continues, the sore throat is worse (white spots on the red, wondering about strep) and the pain in my calf is more frequent and now starting to move up my leg.

If this is strep do you think it could be causing the tachy and leg pain too? I'm on mestinon and wondering if the leg pain could be a side effect of this????

It's Sat. night now so nothing available as far as dr. or clinics. Any advice???

Thanks,

JJH

I can relate to the "sensory overload" feeling. Many times in the evening if the whole family is in the living room and the t.v. is on and the kids are talking I just feel crabby because of the "noise". It's like it puts me on edge or something. I just thought I was losing my patience with my family but maybe there is a reason????

JJH