Tilt Training And Newbie

[mkoven]

Hi,

This is my first post here, though I've been lurking for a bit. An electrophysiologist recently diagnosed me with neurocardiogenic syncope. I also have hypermobile eds. Any way, it's all gotten much worse since this summer. Before I would feel like I was going to faint a couple times a month. (I think my first faint-spell was four years ago, and triggered by super-intense exercise. ) Now it's all day long. I really want to get on top of this. I work full-time and want to keep being able to. I've come off prednisone in the last month for some serious allergic reactions and have noticed that my faint-spells have been much worse since. The cardiologist says this makes sense, as the prednisone kept up my blood volume, and I may be a little adrenal insufficient now as my body gets used to being prednsione-free.

So far, I've found that 30-40 level compression waist-high stockings help a lot. But not as much as I'd like. I'm hesitant to try meds, as I react strongly to drugs and am allergic to 30 different one at this point. I've been drinking and salting up a storm, and don't notice a huge difference. I have a rx for lexapro, but have been nervous to start, as I react so unpredictably and have too much going on at work to play around with side effects. Maybe over thanksgiving?

Anyway, I'd read that tilt training-- or basically training yourself to be upright for longer periods can be effective. I tried last night, with my compression stockings, to stand for a measly five minutes. After 3, I started getting sweaty and nauseated. I probably should have sat down then. But I felt down right sick at 5. Has anyone else done this? How does one start/ease into it without making oneself sick?

(I figure I've lost some of my ability to stand for long periods , because with my bad joints, I've avoided static upright postures for the past couple years. Now that my joints are feeling a little better, I've wanted to stand longer. Oddly I can walk for about ten minutes- and only feel faint when I stop. I guess walking keeps the blood moving...)

[Dizzy Dame]

Hi and welcome to the forum I'm sorry you have to be here, but I'm glad you found us! You'll find (if you haven't already) that there are many here with EDS.

I've heard of tilt-training, but from my understanding, it has only been studied in those with ideopathic NCS; meaning people who have NCS but are otherwise healthy. Because you have EDS, I'd definitely consult with your neurologist about tilt-training. It may not be advised in those with EDS, and you don't want to risk your skull, and waste the precious energy you have trying a treatment that may not be effective, you know?

-Lauren

[Sue]

Hi and welcome to the board!!

I have NCS as well, Dr. Grubb was going to have me try tilt training as well, but didn't last even a minute in his office so we ditched the idea. But others have had great success using it. Don't give up!!

((Hugs))

Sue

[lthomas521]

Perhaps if they hold me underwater for a little bit longer each time, I'll learn to breathe underwater.

There's been one trial of "tilt training" that I know of, and it was for neurocardiogenic syncope in adolescents. The report suggested that these patients did well with the training. However, it was not randomized. In other words, the subjects were not randomly assigned to the training or a control group. That leaves open the possibility that the healthier people participated in the training and the sicker people refused it. That is a major methodologic problem with nearly all of the trials of exercise-type interventions. Even if you use randomization, the really sick people tend to drop out, because they can't tolerate the exercise.

Also, the subjects seemed to be otherwise healthy adolescents who had a fainting problem but weren't getting better with or couldn't tolerate other therapies. None of these kids had POTS or EDS, as far as I can tell.

If you want to try this training program, at least have someone to catch you when you fall down. You might want to use a blood pressure cuff to see what your pulse and pressure are doing during the training.

http://circ.ahajournals.org/cgi/content/full/100/17/1798

Personally, I never faint, and if the cure for my problem were really this simple, I wouldn't have any problem.

[cardiactec]

heh, yeah an electrophysiologist at mayo clinic told me that much reseeach has been done in tilt training.......he said that out of anything and everything that seems to help pots/autonomic dysfunction (i think he more specifically focused in on people diagnosed with pots, not NCS) tilt training seems to cure most people! he wanted me to begin trying to stand against a wall, completely motionless for 45 minutes! yep, you heard me correct. no 5 MINUTES, 45 MINUTES! .........i havent tried it. i usually can stand for 25 minutes, but not motionless, and even standing for 25 minutes moving around gets very hard for me to do.......luckily i can though, which helps me to keep a job part time! .........

....but anyway, just thought i'd tell you that yes, i have heard of tilt training and that an electrophysiologist from mayo (this year) told me that it helps and sometimes cures a lot of people with POTS form of dysautonomia..........

[MightyMouse]

Just thought I'd chime in to say that folks here are correct... no way to train your collagen to stretch less when you stand up ah, if it were that easy...

However, lower body muscle building can be useful to give collateral assistance when you're standing. Also useful are what are called "counter-manuevers", where you essentially tighten up the lower body to prevent a faint if you feel like a syncopal episode is starting. From the primary DINET site:

http://www.dinet.org/what_helps.htm

"Countermaneuvers can help to decrease symptoms by lessening the amount of blood that pools in one's legs. Useful countermaneuvers include: standing with your legs crossed, sitting in a low chair, sitting in the knee to chest position, leaning forward with your hands on your knees when sitting and tightening the buttocks, thigh and leg muscles when standing (particularly when standing for any length of time). Research shows that tensing the leg muscles while standing enhances brain blood flow and reduces sympathetic activity (van Lieshout Pott, Madsen, van Goudoever & Secher, 2001.) Squatting can also be a useful countermaneuver, although some patients report an increase in symptoms after squatting."

I feel for you with the medication allergies--we're peas in a pod on that one! I'm fighting another sinus infection without antibiotics b/c my docs and I are afraid to use what is now my only choice. I used to have 2 options, but I got hives the last time I took one of them. so, I completely "get" your hesitation about adding lexapro to your body right now. Perhaps once things have calmed a bit, and/or you've exhausted your non-rx, non-otc medication options.

Nina

[AJVDK]

Just wanted to drop a line and say welcome, and hello!

[mkoven]

Just wanted to drop a line and say welcome, and hello!

Thanks for the welcome! this whole thing has been quite unpleasant, but it's good to read others' accounts of what's "normal" for ncs/pots. I feel like such a freak around all my friends and family--I've always got something going on. and people are quick to tell me it's anxiety or stress. And it's not like there isn't plenty of that--this past summer has been VERY stressful professionally. I'm sure the stress hasn't helped. But this thing also seems to have a life of its own.

I don't know if this could also be ncs/pots. since May I get these episodes of weakness. At first they were one-sided, and I got checked out for stroke. All clear. As they were onesided till recently, and alternated sides, the tentative diagnosis was hemiplegic/atypical migraines. they last too long to be a seizure. They last up to several hours and then pass.

Now they are bilateral, affect arms, legs, and face. It's not really noticeable to someone else, but I can feel that my fine motor skills wax and wane during an episode. it also feels a little blood sugar related. When my blood sugar feels low and I'm really hungry, they are worse. Pots/ncs related? I could call the neurologist and make an appointment. I'm just tired of always showing up with these weird symptoms and having someone tell me it's psychological.

I could make a career out of going to the doctor...just not a very fulfilling/satisfying one....

[bttrflyamby1981]

I also wanted to welcome you.

Amber

[lthomas521]

Here's another article about tilt training. The subjects had neurocardiogenic syncope. There was no control group.

http://www.jstage.jst.go.jp/article/jhj/45/5/833/_pdf

[Suzanne]

Welcome, sorry you are feeling so bad. I had a chuckle at your potential career - visiting doctors! I think I can add this to my resume too. I don't know why everyone is so keen to tell you/us that it is all in the mind. Why would anyone want to make this stuff up? I would encourage you to listen to your instincts regarding your health and see docs when you have a real need and have the energy. If you are very stressed, and this is very understandable, this is an area that you can deal with and will help with your health. Enough babbling, WELCOME

[OCsunshine]

Oh my gosh, training yourself to stand still and not black out? YIKES! BE CAREFUL!!!

I also have NMH (same as NCS) and EDS, I have had the condition for over 10 years. When I start to feel 'better' and want to see how I've improved, I used to be tempted to give myself the "poor man's tilt test" at home (ie, standing still and seeing how long I could last). I told my doc at Hopkins what I had tried and he said NOOOO do not DO that!!! Basically, it's dangerous and it's just going to wear your body down more.

I like what was previously posted on this strand- hold me under water longer and I'll learn to breathe under water. That's perfect. ;-)

However, there are many other treatment options you could explore. Many of us on this discussion board are on several meds (and yes, it takes us a lot of trial and error to find what works for each of us). I have found a beta blocker to be incredibly helpful to me. I have also used Florinef for over a decade, which makes sense why the steroid helped you earlier.. Florinef is also a steroid.

Anyway, carefully building up muscles can help the blood flow (that was already mentioned, too) and experimenting with your diet to see which foods help/hurt you. I also found an Osteopath of Neurology to be very helpful with working out 'tight' spots and allowing blood flow to be free-er.

Welcome to the group!

[Guest dionna]

welcome! i too have been diagnosed with NCS, in fact that was my first diagnose! i have tried the tilt training and i still do it time to time but i have found that if my body wnats to feel bad it is just going to feel bad no matter what i do to try to make it feel better. good luck to you on finding some relief.

dionna

[mkoven]

welcome! i too have been diagnosed with NCS, in fact that was my first diagnose! i have tried the tilt training and i still do it time to time but i have found that if my body wnats to feel bad it is just going to feel bad no matter what i do to try to make it feel better. good luck to you on finding some relief.

dionna

Thanks for all your replies. I'm just desperately looking for med-free ways to feel better. I worked a lot on the computer today, and did not feel good when I got up. Head pressure, short of breath. It's freaky. This was with the 30-40 stockings--without which I'm sure I would have felt worse.

It's just hard to know when my symptoms are worthy of an er trip or even a doctor's call. Still learning what's normal ncs. Because typically ,short of breath, faint, sweaty, chest tightness is the combo that means "call 911."

I've had ekgs, and echocardiogram, and 2 30-day event monitors. The only abnormality was tachycardia, but always with a normal sinus rhythm. I can't do the tilt table, because my joints can't take being weight-bearing so long. Haven't done a dobutamine stress test in a couple years, and I'm too allergic to the adhesives they use. Hard to know when to act... As I'm sure you all understand, the er is a huge ordeal-stress, time, money, and energy-wise.

[Guest dionna]

the way i have known to go to the ER is if something new or different arises that is scary or painful or if i get hurt. i always go if i get hurt because you never know. two people that broke their neck told me that they felt no pain until the next couple of days and then they finally went to a doctor and found out that their necks were broke. one was just a child and one was a female marine that was iraq when it got broke.

med free ways...

i have tried medication and med free ways. honestly i prefer to be med free. why? side effects in me are worse or add to all the problems ncs and pots already give me. i have tried a pots diet getting rid of foods that take longer to digest and require more blood, eating smaller amounts of food throughout the entire day, lots and lots of water and gatorade, excercise that my body can handle, mind over matter, staying out of the heat, staying in a wheel chair when i go out, staying away from situations that could be stressful, avoiding crowds, journal keeping, using the forum, trying to find new hobbies to keep my mind off my bodies crazy ways, i changed my lifestyle all together really. i use to be very active but i learned that i needed to slow down some and smell all the flowers, not just the roses. just pace yourself and learn what your limitations are. i think that was the hardest thing for me. it is still hard because even though i feel bad i still want to be miss independance and i don't want to have to ask for help. you will just have to learn what works for you.

i hope that may have helped some.

dionna

[scarfgirl]

Perhaps if they hold me underwater for a little bit longer each time, I'll learn to breathe underwater.

Brilliant and Snarky. I love it. I'll save that one for the next time a certain someone gives me crap about my illness.

Mkoven: Welcome, and I hope you find what works for you.