New Member

[mully2014]

I've had my condition all of my life but wasn't diagnosed until I was 14. Originally I was diagnosed with neurocardiogenic syncope and my cardiologist believed it would be a simple and easy case to take manage/take care of...unfortunately this was not the truth. There wasn't any triggers to me passing out but gradually my episodes increased in amount and intensity. Many tests were done and all turned out normal besides the HUTT test that showed up confirming my diagnoses. After I passed out while running (I'm a major runner, well at least I was before) I was also diagnosed with exercised induced hypotension. I've tried med after med with NO relief and continued passing out. Start of my freshmen year I was passing out every day and feeling miserable even when I wasn't passing out. SInce I don't always get a warning of when I'm going to faint I've gotten a few concussions. My first concussion was on Sept. 25,2010 after passing out falling and hitting my head at the homecoming dance. Oct.22,2010 I got my second when I fainted and smacked my head against a wall and headboard. Third concussion was on Nov. 17, 2010. My third concussion has caused me many problems. I now have chronic pain in my head (possibly from my condition). I also had lost my memory after my third concussion. I've worked hard to get some of it back but there is still gaps and always will be. When I finally returned to school (about 2months after) I had to be in a wheelchair. During an episode I injured my hand and had to have surgery on it, I still have problems with it so now it is stablized in a cast. I have continued to keep passing out and now recently have been diagnosed with neurocardiogenic syncope coexisting with postural orthostatic tachycardia syndrome. I also got my fourth concussion on Nov. 17,2011. I'm sorry this is so long but I'm hoping to find some people that can relate to what I've gone through/going through! Thanks for taking the time to read this!

[rubytuesday]

Welcome and sorry that we meet under these circumstances. I'm fairly new altho my 'neurocardiogenic syncope' started nearly 3 years ago. It was not until this year with more recurrent episodes of near syncope--BP bottoming out and heart rate racing with legs collapsing beneath me. Referral was made by my cardiologist in Mar. 2011 to a cardiac specialist at UTMC as he told me I had POTS. I had been on Mestinon, but doing the least bit of exercise my diastolic was going too high. Cardiologist took me off that and wanted cardiac specialist to figure things out. Saw this specialist in Oct. He now says I have Orthostatic Hypotension (with blood/fluild pooling in my legs) with my autonomic nervous system failing. He told me I should expect fewer and fewer warnings of faint. The 3 times I passed out, once was in unmowed grass (I was outside/hot/trying to push mower uphill), second DH caught me by the head just before it struck the ground, and the third time was at a park (trying to pitch baseball to g-son--guess I bent over 1 too many times).

With my POTS and Rx's for 2 1/2 yrs I was to eat and drink salts and fluids. After seen by cardiac specialist my sodium is now restricted. I used to bike 10 miles everyday but after couple close calls once while riding (perhaps leaning forward) and in the dismount and with pushing bike up hill of driveway, I put bike up til they figured this out. Legs felt like lead, no wind (and it didn't seem like my asthma was the culprit). Now after re-conditioning the legs+ building endurance (also have EDS III that affects muscles/veins) in physical therapy aquaciser/treadmil, it is recumbent stationary bike for me now. Specialist had me back on Mestinon and Midodrine to make me hypertensive (still taking the big plunges). Seems now, I can't tolerate the Mestinon--such bad abd. cramping and vomiting I was losing weight and couldn't keep ahead with the fluilds. They're letting the Mestinon get out of my system--stopped it and will later start something else to go with the Midodrine. Specialist told me it may take many trials so I have not given up. I am supposed to do the Rx above knee compression stockings (only I just wear them to places like church and funeral homes, etc.), no bending over at waist or raising/lifting above heart level, no hot showers (and shower in shower chair). I am a bleeder with osteopenia so specialist told me 4th leading cause of death w/ this is from falls. That's why they're trying to get me hypertensive. Still on occassion, I find I may have a swing when the BP drops and I get tachy but mostly now when BP drops, heart rate hangs in low 60s. He told me to anticipate a pacemaker in future as well.

I am lucky not to have hurt myself too badly--yet. (I probably just jinxed myself). So for me it's nearly 3 years and we're still working on a 'do-able regimen' for me.

If its one thing we learn, it is patience. The people/website here offer great support. I don't mean to sound rude or anything, but I'd think about wearing a helmet (altho I started to do a face dive into out concrete drive, another time DH caught me). My DM had faints but was never dx'd with OH or OI or POTS but she doesn't pursue things and she's on Coumadin--has broken a front tooth in a faint and everything.

I hope you have some good, knowledgable doctors experienced in this. I wish you safe journeys.

[mully2014]

rubytuesday:

Thanks for responding. Yes, I've worn a helmet before for the concussions. Unfortunately wearing a helmet still can't prevent concussions that occur from the head whipping aroung so quickly and many doctors didn't want me to wear the helmet. A lot of them don't even want me to be in the wheelchair (I'm in it only at school) but for safety issues at the school I'm still in it. Yes, I have a wonderful and compassionate doctor. I've had many other doctors also review my case but they haven't offered any other suggestions so far and currently Dr. Grubb is reviewing it to give my cardologist some ideas.

I hope things start getting better for you and that you are able to stay safe. Thanks once again!

[Katybug]

Hi mully2014,

Glad you found this website. I think you will find some really great support here, as I have. I am sorry to hear that you are not well but we share great information and give each other tons of support.

Katie

[sue1234]

Welcome! I had to post a link to this article, which is a place for you to read quickly about "wheat-induced exercise-induced anaphylaxis". They are talking about changing the name from "anaphylaxis" to "allergy", but you can get the drift. Apparently, some people with this allergy get urticaria and angioedema when exercising. I have had that problem from even before my POTS began. Now, it is awful, and my hands swell and I get lightheaded. I am on a gluten-free diet now to see if any of my odd symptoms improve. Anyway, I saw that you would pass out running. Just a thought.

http://www.ncbi.nlm.nih.gov/pubmed/20696684

[mully2014]

Sue1234:

Thanks I will look into it... I've been curious about this too. I have been monitoring what I eat and I see how I feel after I ate it. So far there hasn't been any correlation. My mom has a gluten intolerance so some of my meals are gluten free but it doesn't seem to make a difference. How are you monitoring how you feel in relation to the gluten?

[sue1234]

I'm on my 6th day of being gluten-free. So, according to quite a few celiac and gluten intolerant people, it might take weeks before I can notice a difference. I'm so far feeling AWFUL, but waiting it out to look for the light at the end of the tunnel. So, I guess I'll just see what symptoms improve and which ones don't.