ddschool

Yes I had bradycardia. I wore a monitor for a couple of months & eventually got a pacemaker. 

Anyone know of any docs near Memphis, TN?

I’m not classified as POTS, just dysautonomia b/c I don’t get tachy. I did have bradycardia, got a pacemaker 9 yrs ago. Still have all of the other symptoms incl hypotension. If you’re HR is low & doc won’t consider a pacemaker, I’d get another opinion. I wore a monitor for 30 days then got my pacemaker.

It has helped my memory & IBS

Yes, I too have low grade fevers & no one can find out why. I just figure it’s because my nervous system is failing more in addition to the other dysautonomia symptoms.

I used to work as a hospital nurse,  but haven’t been able to work since getting my pacemaker 8 yrs ago.

On 12/13/2018 at 3:40 PM, cherichair19 said:

Good Afternoon All,

I have noticed more fatigue this week and have had a low grade fever of 99.0 mostly. No other s/s. I'm thinking that the low grade fever is a sign of exhaustion? I have had them for years on and off and usually lasts for a couple of days to a week or so. I wasn't diagnosed with everything until a year and a half a go.

I have had to switch my job from a floor nurse to a school nurse this year and have found I am quite frustrated, sad, pissed off and so much more. I am loving the school nurse gig, the different pace is much better for me, especially with the lessening in the hours a day, less stress and the minimization of position changes.  But, I find any time that I talk to a friend or spend time with friends from my old job I leave the time the together or end a conversation so sad and mad. I am not usually a crier, but boy oh boy have I been lately.  

I know that this is a transition period, with alot of new things going on, but anyone else have some of these frustrations before? 

Sometimes I feel like I don't even know myself anymore, so much has changed in such a short period of time...I miss my old self.

Thanks,

Charity

GI problems aren’t always what you’re eating. It can be your nervous system triggering the nerves in your GI tract causing the spasms, urgency, etc

I’m curious how/if anyone has dealt with dysautonomia & aging parents? I’m an only child, and now having to navigate decisions with my aging parents. I can feel symptoms getting a little worse & getting a lot of anxiety because of my parents. My husband is taking the brunt of my frustrations, & I have to keep apologizing. 

Thanks for any advice.

Just curious if anyone has tried the 23&me health & genetic tests?

I’m wondering what your suggestions might be for finding cooling clothing/pajama bottoms for bed?

I have been so miserable. I have fans, cooling mattress topper, wear my hair up, etc. I wear pajama pants to keep my legs from touching & getting hot, but that’s not working. Athletic or yoga pants still too thick of material.

Open to ideas! 

Yes, I have & I feel so much better at higher altitudes. Last summer went to Colorado, & I felt human again, hardly any altitude sickness. My husband is a fit & active guy, and he had altitude sickness for a few days. I did well at Yellowstone. Maybe it could be also because where I live near Charlotte, NC the humidity is high.

Yes, I have a problem with motion & planes sometimes.

Drinking a lot of water is key at higher altitudes.

I always remember Micheal J Fox saying his Parkinson’s symptoms were basically gone when he went to the Himalayas.

If your vision change isn’t related to your BP dropping, you might want to look into Temporal Arteritis. Happened to me, & I always have to carry Prednisone in case it happens again.

I am wondering if anyone uses essential oils to help with symptoms? I see that Young Living has one called Brain Power for brain fog & other similar issues.

Thanks for any input.

I am used to (or expect) my vision to go out w/ position changes, but now I'm noticing my hearing in both ears becomes muffled. It's becoming very frequent all of a sudden.

Does this happen w/ anyone else?

Thanks for any input.

Yes, I get it. My eye doc gave me an eye drop (Emadine I think) and it helped

Does anyone have temporal arteritis? If so, what helps it?

My temples have been progressively swelling over the past few months, and very uncomfortable. My neuro had me get an u/s of my temples & forehead but haven't gotten the results yet.

Thanks for any input.

My mom found this link

http://www.synergyhealthconcepts.com/vasovagal-therapy/

Anyone heard of this, or tried it?

http://www.synergyhealthconcepts.com/vasovagal-therapy/

Absolutely! You're not alone! I've learned I have to pace myself on good days or I'll pay for it

My hr was high 40-50s, and when I took the Midodrine, it kicked in my vagal nerve lowering my hr to low 40s-upper 30s.

My bp was 90/50-60 (before I got symptomatic 5 yrs ago, it was 120/70, & my hr was 70s).

I had tried other meds, and nothing was working, plus I was at max dose of Florinef-the pacemaker was my next best option.

It wasn't a cure, I still have bp issues, but at least I can somewhat function better & mentally process better since I have more perfusion. (my husband said he didn't hear the "Jeopardy" theme anymore after he asked me a question!)

My minimum daytime hr is 80, & night time is 50 (any high & I can't sleep b/c my body isn't used to the higher hr).

Lol...I love the "jeopardy" comment - I can soo relate!

Florinef does seem to help me with some of the brain fog. I really don't want to see the 30's hr, so I'm hoping I wont get there. That must have felt horrible for you. Glad to hear that the pacemaker has given you some improvement. I appreciate the info - thanks!

I'm glad I'm not the only one w/ the "Jeopardy" issue!

I didn't know my hr was in the 30s til I wore a monitor for a month(usually happened while sleeping). But, I could definitely tell when I was in the 40s.

Despite the pacemaker & the meds, I still have an issue w/ brain fog. I just started 2 vitamin supplements (Turmeric & Vicopentine), & the fog is much better.

Take care!

Yes, that is a side effect. I had to get a pacemaker so that my cardiologist could increase in dose of Midodrine to keep my bp up.

Did you have low heart rates before Midodrine? Your bp's must have been pretty low, were they? Mine are high 90's/50's, so I feel like it's manageable at that, but I'd love to be more functional - just weighing the options.

My hr was high 40-50s, and when I took the Midodrine, it kicked in my vagal nerve lowering my hr to low 40s-upper 30s.

My bp was 90/50-60 (before I got symptomatic 5 yrs ago, it was 120/70, & my hr was 70s).

I had tried other meds, and nothing was working, plus I was at max dose of Florinef-the pacemaker was my next best option.

It wasn't a cure, I still have bp issues, but at least I can somewhat function better & mentally process better since I have more perfusion. (my husband said he didn't hear the "Jeopardy" theme anymore after he asked me a question!)

My minimum daytime hr is 80, & night time is 50 (any high & I can't sleep b/c my body isn't used to the higher hr).

Yes, that is a side effect. I had to get a pacemaker so that my cardiologist could increase in dose of Midodrine to keep my bp up.

Thank you for the info!

I am curious, do you eat out, and if so, where/what do you eat to stay on track?

I am definitely trying to make dietary changes, & looking for organic food to make at home, but we do eat out a few times a week.

I went to The Vitamin Shoppe today & bought some Turmeric. I looked for the Piracetam, & they didn't have it, but suggested Vinpocetine. I've also been taking Ultra Juice tablets for a couple months that I bought there too.

Yea, I'm having a problem too w/ my hair. I thought it was just b/c I was getting older, but maybe not.

I went to Ulta & bought this Nioxin kit. It is shampoo & scalp treatment for thinning hair. After a week or so, I noticed a lot less coming out/breaking.