Need help/advice

[Barry]

Hi everyone. I'm a 31 yr old male who's been healthy most of my life, but now everything has changed. I recently had a tilt table test done & when in the upright position I blacked out (lost consciousness) and was told my heart stopped for 7 seconds. Diagnosed neurocardiogenic syncope. The reason I had the test ordered was because I've been terribly short of breath with chest pain & extremely fatigued for many months now (numbness also). I also have gastroparesis diagnosed last November. Anyway, my symptoms are only getting worse quickly and I'm literally bedridden & the doctors I've seen have still just told me I'm gonna be okay and to just increase my fluid & salt intake, which isn't even helping. Even right now I'm in bed struggling to breathe properly w/ numbness in my legs.

Is there anybody here who might know what I should or even can do now? Anyone in the same position who knows anything that can help? Doctor said he would refer me to Vanderbilt but it could take a long time. It really doesn't feel like I have a long time to be honest. 

Sorry for long post. I just don't know where else to turn? I'm desperate. I doubt going to the ER would help me. I tried that a few months ago with terrible symptoms and they sent me home. Thank you very much for anyone who took the time to read this.

[Guest KiminOrlando]

Hi Barry.

Vandy is excellent. There may be quicker options.  What state are you in?

I don't know what else is going on with you to explain why they didn't at least start florinef and maybe a beta blocker. I'm not a doctor, so maybe there was a reason. My first few doctors just told me to get on a treadmill for tratment even though I lost consciousness on the tilt table. I got no meds until I got to Vandy. The doctor at Vandy was shocked. Even with a diagnosis, some doctors still don't think it is a big deal. 

With gastroparesis, did you also have pernicious anemia? Are they treating the pernicious anemia? Is your gastro treating the gastroparesis with meds? Some will, some won t. Mine did and it made a world of difference. 

Hang in there. Getting to the right doctor is the hard part.

Kim

[Barry]

Hi, thanks for replying. I'm in SC. I was diagnosed with eosinophilic gastroenteritis in 2011. I went to the NIH for clinical trials on it. That went away after being on Prednisone but the flare up was horrible. Anyway, not much I can do about gastroparesis except watch what I eat. It seems to me it's all neurological / autonomic. What do they do if that's the case? I guess I'll just have to wait to get into Vanderbilt, but I don't know how to manage in the meantime. I was just given florinef 0.1 mg. I'm worried it will increase my BP or have other nasty side effects. Thank you for replying. I know nobody really has any concrete answers. I'm just trying to figure out something, even if it's little, that can help.

[mountain girl]

I am very sensitive to meds, but the florinef helped me with no side effects. I am on the 0.1 mg as well. I still had symptoms, but even a little better was something for me. I wonder if your heart rate is elevated when you are short of breath and having the chest pain? Those were common symptoms for me in the beginning too. Finding the right doctor is possible, don't give up, it just takes time. 

[Barry]

Thanks mountain girl. Did the florinef help you feel better overall? Because for me it's like I can't even get up and walk around without feeling like I just ran a marathon. Is it supposed to work quickly or build up over time? You may not know but I wanted to ask anyway.

[Guest KiminOrlando]

Hi Barry. I took the florinef and it helped me. When you passed out on the tilt table, was your BP low? Does your BP not normally run low? Just trying to get a feel for why you are worried about high BP. Does your heart rate normally run high?

Did you go to MUSC in Charleston by any chance? If not, I recommend them. I go there. 

Let me know if I can help.

Kim

[Barry]

Thank you Kim. No, I went to Greenville Memorial which is closer to me. I'm not sure what my BP was doing, only that I felt awful when the table went up, then passed out & my heart stopped for 7 secs. My BP is usually normal-ish, sometimes even high. My pulse is very low when at rest. Higher when excercising obviously, but I can barely exercise anymore. I took the florinef earlier & my BP is already higher when I checked + headache. I actually feel worse now. Weird.

Can dysautonomias be life-threatening or do they just create very bad symptoms? That's what I wonder.

[Guest KiminOrlando]

Hi Barry. There is one kind that can be life threatening that I know of. It is HIGHLY unlikely you have that or you would be having way more problems by now. 

MUSC is opening an Autonomic Clinic. The doctor is Dr. James Glenn, Cardiology. He does nothing but dysautonomia now. Most likely he can get you in faster than Vandy and he could still refer you to Vandy for the gastroparesis or find you a neuro and gastro there. I drive from Orlando, past Mayo, to see him.

Your particular 'flavor' of dysautonomia may not respond well to the florinef. There are several other meds they try. This whole thing is very hit or miss. If you give florinef a few days and your head still hurts, you may have to call the doctor that prescribed it and let them know. I had a lot of med fails before I found some that helped me. If your BP gets too high, you may have to call sooner.

I have been with Dr. Glenn for 10 years. I can't guarantee he can help you, but it would be a more timely second opinion. MUSC has special rates with local hotels for their out of town patients. If you check with your insurance company and decide to do this, let me know and I will get you the number for the hospital's Guest Relations desk. They have to pre-arrange the rate with the hotel. That number seems to be kept fairly secret. I don't know why.

Nothing is easy about this, but it can get better. I'm never going to have a 'normal' life, but I have learned to adapt somewhat. 

Now I am off to do the shower race. You know the one... can I actually finish my shower before I pass out, or am I going to be on the floor, wrapped in a towel with soap in my hair. I'm letting my hair grow a little longer. There are consequences.  

Keep us posted.

Kim

[Barry]

If dysautonomias are all malfunctions of the nervous system, why would florinef be the 1st treatment? What about more focus on the spine, or nerves like the vagus nerve, etc. CTs and MRIs? It's frustrating being very ill and not knowing why. I know research is being done but it's very frustrating

[Guest KiminOrlando]

Because they are treating symptoms, not the disease right now.

[Barry]

Wow that is great info. Thank you Kim. I'll look into it.

[Barry]

lol yeah I know how it is. "How long will I be up before sitting back down for sweet relief." 

[Guest KiminOrlando]

Have you read this book?

http://www.ndrf.org/NDRFHandbook.htm

I learned so much about dysautonomia from reading the handbook. 

[Barry]

I'll save it. Looks like a bunch of good information so far. I'm interested in natural ways to manage dysautonomias because I don't like having to take these meds. Don't have a choice for now though & it seems meds do help lots of ppl. I still want to have imaging tests done though. Exercise was best way to manage but it's "progressed" to where I can barely do that 1-2 times a week if lucky.

[Barry]

I know meds are important but is there anything aside from the meds that help you or anyone else feel better? That vasovagal maneuver or w/e doesn't work for me at all.

[MomtoGiuliana]

Yes there are things besides meds that can help some patients. 

You may have looked at this already but you can find some of this information here:

https://www.dinet.org/content/information-resources/ncs/

 

[Debbie Rose]

I too have neurocardiogenic syncopy. Florinef .015mg has been a savior to me! For the first year I did very little more that sit reclined in my rocker/recliner and attempt chores in 10 minute increments. Acceptance came slowly but this website and these friends have helped me manage things realistically. I drink a liter of water first thing in am, along with eggs with lots of salt. I try to get 2 1/2 to 3 liters of water a day and keep the salt up too. On days (about every other) that I plan to do things-clean house, work in yard, go shopping, I wear compression clothes-not just knee highs but leggings and tops too. It helps stabilize my BP. I can manage for about an hour then I must sit/recline/rest for 20-40 minutes depending on how I feel. I eat small meals since I have gastropareisis and a weird sugar/dump/bloat thing too. After the first hour and then rest, I have to honestly access how I feel to do more, less or anything at all. It's a judgemet call.  I try to nap in the afternoon and get 9 hours of sleep. I use a cane for balance when I am out and about. I have a peddler that I use in front of a reclined chair and started at 5 minutes 3 times a week and built up from there.

Start slow, one small thing and then next time add a minute or 2 and listen to your body, do not push-it'll smack you down the next day....read alot and calm down and as you adjust, small things will start ti improve

Good luck,

Debbie

[jvherenow]

Mestinon is another drug they might try for you. The key is getting a doctor who knows what the heck dysautonomia is and what to do about it! So frustrating that you haven't found your medical team yet. Once you do, you'll feel so much better (I did).