syncope in er

[por-cel19]

woke up today feeling extremely tired had to crawl to bathroom. Went to different ER from yesterday they actually gave me fluids. I feel somewhat better. Just normal tired I had passed out in ER after urine sample they knew I wasn't playing after that I'm wondering if it was medication from yesterday. Or pots because heart rate jumped over thirty point and Bp was actually somewhat normal. 127/70 any thoughts?

 

[alex3619]

Its so very hard to tell. I used to pass out a lot. Its far more common with me when I allow myself to become exhausted. Saline/fluids often help patients with this. Also POTS is not the only kind of OI, I have NMH, neurally mediated hypotension, combined with high blood pressure. Many of us also get adverse affects from medication. Its all possible, and hard to figure out.

I hope you can find some ways to get answers on this forum.

 

[por-cel19]

thank you. The cardiologist I'm seeing diagnosed me as neurally mediated syncope but I think its more than that. I'm going to do more research.

 

[Valentijn]

thank you. The cardiologist I'm seeing diagnosed me as neurally mediated syncope but I think its more than that. I'm going to do more research.

Neurally Mediated Syncope doesn't say much about the cause, and might mostly be a guess based on the symptoms excluding one or two other types of OI. Tilt Table Testing and blood labs might be able to reveal a lot more, which could help with treatment options.

If it's neurally mediated, a typical cardiologist might not have the experience or education to handle it, and you might need to see a dysautonomia specialist instead.

 

[por-cel19]

the trouble is finding one in the state of Arkansas

 

[halcyon]

the trouble is finding one in the state of Arkansas

I'm not sure how capable you are of travel currently, but there is a well known autonomic disorder clinic at Vanderbilt in Nashville.

 

[Gingergrrl]

There is also an autonomic disorders clinic at Stanford but of course this would involve much more travel. I will be going there in about 1.5 months and am hopeful that they will be able to help me.

@por-cel19 Am so sorry to read your posts re: your bad reaction to Midodrine. I tolerate very few meds and ironically, this is the one that has helped me the most (no idea why?!)

 

[por-cel19]

I've been reading up on Vanderbilt I might try it if I can't straightened this out with current ep cardiologist. I'm not sure how far Stanford is. Gingergrrl I have no idea why midodrine did that but Ill change it to something else.

 

[Gingergrrl]

I've been reading up on Vanderbilt I might try it if I can't straightened this out with current ep cardiologist. I'm not sure how far Stanford is. Gingergrrl I have no idea why midodrine did that but Ill change it to something else.

@por-cel19 Stanford is in Palo Alto in Northern California. The only alternative that I know to Midodrine is Droxidopa (Northera) which is available only through one specialty pharmacy and requires an application. I was approved for it but then learned that I was not a candidate b/c of potential side effects and it contained four food dyes which I cannot take due to MCAS and it cannot be compounded.

 

[Sushi]

The only alternative that I know to Midodrine is Droxidopa (Northera) which is available only through one specialty pharmacy and requires an application.

There are also other vasoconstricting medications and substances that an autonomic specialist might recommend.

 

[halcyon]

I have no idea why midodrine did that but Ill change it to something else.

Midodrine is suspected to lower blood volume over time so it's possible you may already be hypovolemic and it just made that worse. If that is the case perhaps you'd do better on a volume expander like Florinef instead.

 

[por-cel19]

ill ask about it then on Monday and ill try an schedule a appointment with enchroinologist about blood level volumes

 

[Sushi]

ill try an schedule a appointment with enchroinologist about blood level volumes

They need very specialized equipment to test blood volume. Most hospitals would not have it unfortunately.

 

[por-cel19]

well ill look around even if I have to drive across state ill do it.

 

[por-cel19]

so I talked to my drs nurse she was pissy and said she may not be able to change it and to give it more time. I don't want to argh.

 

[Gingergrrl]

so I talked to my drs nurse she was pissy and said she may not be able to change it and to give it more time. I don't want to argh.

Although I do well with Midodrine, I disagree with the nurse in your case. Any time I have ever had a bad reaction to a med and forced myself to give it more time, it has never worked out. I am trying to think of an exception but literally cannot. If a med is neutral, I will give it more time but the ones that caused me horrific reactions that I pushed myself to continue, always turned out badly.

 

[por-cel19]

well I wont try it again. I'm so sensitive to medication its unreal. I'll try salt tabs maybe that'll help or get an appointment with a real specialist maybe Vanderbilt.

 

[anciendaze]

If you are going to try salt tablets I'd recommend you consider Salt Stick capsules, which have several electrolytes plus buffering agents to improve rapid absorption. These seem to help me when I feel close to syncope.

 

[Gingergrrl]

I've taken those salt stick tablets every day for the last few years and they are a good product. Just make sure to buy the blue bottle without caffeine (vs. the green bottle contains caffeine.)

 

[por-cel19]

how much would you recommend to take?