Tools and success in managing your Dysautonomia

[samuel0404]

Hello again  I was wondering if we could get a a list going of what has helped others out there in balancing their autonomic system out, or what practices you have found to be very helpful in your bodies overall functioning related to dysautonomia.    ( if there is a previous thread about this let me know, I can always look back).  

Note:  For example, I have read that improving your Heart Rate Variability (HRV) is a direct link to how well your autonomic system woks, which can be improved by meditation, yoga, chanting....  I know many of you out there have more severe dysautonomia, so these type of options may be less helpful than for others.

Thanks!!!!

[WinterSown]

My biggest gain has come from exercise, specifically physical therapy which has improved my balance and strength and has gotten me a more perfused and toned body. Without PT I would collapse more than I do, it's given me the strength I need to hold on and endure the worst aspects of my symptoms. Better perfusion equals to a higher level of alertness for me, I still get foggy but it is less often and less thick.

 

[Pistol]

With me it is definitely meds, I tried many different ones but since starting Coreg, Diltiazem and Guanfacine my BP swings and HR are controlled ( except for during flares ) and Lexapro and Ritalin ( help with brain fog, irritability, concentration and energy ), Protonix, Zofran and Zantac for GI problems, Vit B12 and Vit D and iron ( to balance proven deficiencies ) and Turmeric for generalized joint pains. -- The next most important treatment is IV fluids for flares ( I could not function without them ). --- Then third is exercise - I would be bed ridden and depressed without daily exercises.   

[StayAtHomeMom]

I found an office job that works with me and my awful days. That helps me get up and go. I take meds (metoperlol and midodrine) that help when I feel bad. And bought a Garmin HR to live monitor. If my HR is not way high I push through it. If it is too high I lay down. I think avoiding triggers helps too. I think finding them is hard and it different for everyone but once you find them you learn to avoid. 

[Apple86]

StayAtHomeMom, I was wondering what you class as "way high" HR? I'm trying to figure out when I need to stop what I'm doing and lie down or when it's OK/safe to push on through.  I tend to get worried and change what I'm doing if my HR exceeds 100 sitting and 110 standing (bearing in mind I take beta blockers daily). It's been hitting these levels quite a lot recently due to the hot weather. 

Thanks xx

[StayAtHomeMom]

3 hours ago, Apple86 said:

StayAtHomeMom, I was wondering what you class as "way high" HR? I'm trying to figure out when I need to stop what I'm doing and lie down or when it's OK/safe to push on through.  I tend to get worried and change what I'm doing if my HR exceeds 100 sitting and 110 standing (bearing in mind I take beta blockers daily). It's been hitting these levels quite a lot recently due to the hot weather. 

Thanks xx

It depends on normal. Without meds I am 80s, 90s, 120s. With meds I am 70s, 80s, 90s. So over 140 is when I start to concern my self with laying down. If I am on my meds and I don't feel good but my HR is 105 I just try to ignore it and finish what I was doing. Bear in mind I try not to overdo it though. I don't want to pay for it later. But I am stubborn. My dizzies haven't shown up for mostly over a year so I don't feel good it is mostly brain fog, breathing awful, and heart pounding.  Safe max "exercising HR" is something like 220-your age.  But I think it just depends on your tolerance of symptoms and how your body reacts later. 

Good luck! I know the heat is awful. It has been 90s where I live lately and I avoid long periods outside when I can. 

[Pistol]

@Apple86 - it is better to listen to your symptoms than to check numbers. I get chest pain, dizziness, heart pounding, worsening palpitations, tremors, cold hands and feet, change in hearing and irritable when I overdo things, If I get several of these symptoms I know it's time to lie down. You may have other symptoms than me but once you know the signals then that's how you "gauge" your status. Especially if you take beta blockers your HR may be not as high but your body is revving ! --- Hope things will cool down for you soon - literally!!!

[zerohours000]

On 7/1/2018 at 4:20 PM, StayAtHomeMom said:

I found an office job that works with me and my awful days. That helps me get up and go. I take meds (metoperlol and midodrine) that help when I feel bad. And bought a Garmin HR to live monitor. If my HR is not way high I push through it. If it is too high I lay down. I think avoiding triggers helps too. I think finding them is hard and it different for everyone but once you find them you learn to avoid. 

At least one of my triggers is social media for sure.  It’s a nonstop infomercial of “normal living.”  Can’t do it.  I get too d*** sad remembering it.

[StayAtHomeMom]

44 minutes ago, zerohours000 said:

At least one of my triggers is social media for sure.  It’s badjczlu a nonstop infomercial of “normal living.”  Can’t do it.  I get too d*** sad remembering it.

I think the best thing you can do with any illness is only compare yourself to yesterday or last week. If I compared myself to before I got sick it would be depressing. But I am slowly getting better. I am in a much better state than I was last year. (This has been years for me) so I take that as a win and move forward. Your attitude on life can make a difference.

I love checking my social media. If I can't be there in person at least I can see pictures of my extended family so I don't feel like I am missing everything.