Non-Pots Autonomic Dysfunction Help

[Justin-in-MI]

It seems that most of this site is geared towards POTS which I do not have. Mayo categorized me as having Autonomic Dysfunction w/NCS (unknown cause). I'm going to tell a little of my story and hopefully someone out there who has been through this can give me some ideas on getting better.

About two and a half years ago I went to bed as a healthy 32 year old. I woke up and a switch was flipped in my nervous system. Symptoms: low BP, chronic fatigue, heat intolerance, noise and bright lights cause sensory overload, dairy intolerance, exercise intolerance (I'm missing a bunch but you get the point).

I ended up in the hospital and have been there 15 times since the switch went off. Seven trips by ambulance (the most recent last week). My BP drops, I pass out, and my BP won't go back up until they put about 2 bags of fluid in me.

I get in these situations when I over exert myself for a period of time. For instance if I were to work a 40hr week by the weekend I would be in the hospital.

Now to my point. Has anyone else had the same symptoms and found ways of improving. If I tried the Levine reconditioning program I would be in the hospital after day 1 because I don't have POTS and that type of treatment will not work. Thank you to everyone that replies.

[Racer]

Just want to let you know that NO, your NOT in a minority on this site One thing I have learned is that people in the community throw around "pots" a lot sometimes as a more generic term. Most on this site have some variation of blood pressure and heart rate rise or fall that is causing symptoms. I have the same as you with autonomic dysfunction with ncs.

[corina]

I agree with Racer, I have been diagnosed with POTS but over the years more and more symptoms were added so I usually call what I have dysautonomia. My doctors so far haven't looked into what could be causing it. By trial and error I found what works for me and gets me up my feet though it's a very thin line. I'm currently on octreotide and paxil. I have been exercise intolerant until I started the octreotide, when I'm on the right side of the thin line I can go swimming at rehab (once a week), walk and use my exercise bike (try to do that on a daily base)

[Relax86]

Justin I was only POTs by diagnosis for a short time during the worst of my flare. The remaining symptoms were dysautonomia related. Once I became totally cardiac cleared, I saw an endocrine specialist who found a few things (non definitive) and a rheumatologist (also not highly positive). My cardiologist has some experience with dysautonomia and feels that my underlying reason lies within the endocrine and or rheumy system but at a sensitivity that will not fully be found with standard testing. That being said I felt comfortable with exercising within tolerance....slowly building up. I also researched and was prescribed hydrocortisone for adrenal fatigue which really helped me a ton. Do a lot of research about that then decide with your Dr if that is an avenue for you. I use Midodrine periodically. I meditate to quiet my ANS symptoms a bit and slow my HR. I also really balance my activity with rest. More sleep/rest than most, more water than most, salt, avoiding most gluten, most artificial food additives, mostly clean eating. I am functional. It can be done. Your symptoms match a lot of mine. I'm also a fainter, low BP, terrible fatigue, noise, light, heat and smell intolerant. I scrolled this board for a year watching people like me and seeing what worked for them Good luck to you.

[Justin-in-MI]

Thank you for the replies. I was thinking of starting an exercise plan of a recumbent bike 5 min a day for a week and then add a minute each week. Go nice and slow with it so as not to over exert myself.

Usually after an "episode" as time goes on I am able to do more physically, but then 3-6 months later I have another episode and my body resets and I lose all that I had gained. It's just very frustrating knowing that its going to take me 6 months to feel like I did a week ago the day before my episode. I feel like I'm in a never ending cycle, but alas we push on!

I'm going to make an appointment with Dr. Grubb to see if he has any ideas for me.

[KareBear]

The one thing that seems to have helped me the most is time. I have tried nearly every med used for dysautonomia/OH/POTS, ETC. and different exercises, supplements, dietary changes, everything. Over time though my body has found a baseline and not the big dramatic symptoms it had before. Now everyday is pretty much the same with some slightly more symptomatic than others. I am no where able to do daily chores or work still but at least I know each day kind of what to expect and It took about 4 yrs for my body to settle into this "routine".

I know waiting possibly years isn't very comforting but with time we all learn better what works for ourselves and there is a chance your symptoms could even out or stay more consistant and not have such dramatic swings.

I hope Dr. Grubb can help you!

[AllAboutPeace]

Justin,

I have Pots/NCS and most of the symptoms you described with the exception of heat intolerance (my issues are more with cold core temps and trying to stay warm). My issues began 2 yrs ago (officially in 2 days time :/ )

Exercise intolerance is a huge problem for me as well because of blood pressure drops, extreme fatigue, etc, etc. I've tried different things - got a recumbent bike, regular stationary bike, rowing machine, but they have rendered themselves pretty much useless at this point. Like you, the progress was very slow and regressive with crashes. At this point I've discovered that short walks are the best thing for me right now. I can do 15-20 min walks throughout the day (later in the day is better). These walks are at a continuous steady pace - no standing around or I run into trouble. It actually feels like it's the only time that I get enough blood in my head! It seems to be the only level of exercise that I can manage without crashing.

Have you tried or are you currently on any meds? I had the same issue with my blood pressure not coming back up after passing out and needing 1 bag 1/2 or 2 bags of saline to boost me back up. I didn't try any meds for the first 9 months because I hated to take medications and endure potential side effects, especially if it wasn't going to 'fix' me. Finally though, after noticing the clues that I might have low blood volume (based partly on the fact that IV saline helped me), I tried Florinef. It has definitely been helpful for me and in the fifth week of taking it, it gave me back the ability to drive (which was huge for my independence) and more functional in general. This past summer I took a break from it, for an unsuccessful trial on Midodrine, but I'm back on Florinef now. Essentially that break gave me more proof as to how much it is helping me. Of course, meds are different for everyone, just wanted to let you know what's helped me.

Another thing that I find helpful is wearing abdominal compression. It is easy to put on, not expensive, reasonable well hidden and has no side effects! Here is an excerpt about its effectiveness:

In a laboratory experiment, Smit et al17 found that an elastic abdominal binder that exerted 15 to 20 mm Hg of pressure on the abdomen raised the standing blood pressure by about 11/6 mmHg, which was comparable to the effect of a gravity suit (such as those worn by fighter pilots to prevent syncope during violent aircraft maneuvers) inflated to 20 mm Hg—an increase of about 17/8 mm Hg. Higher gravity-suit pressures had a greater effect.

In practical terms, the binder should be tight enough to exert gentle pressure. It should be put on before rising from bed in the morning and taken off when lying supine, to avoid supine hypertension. Advantages are that a binder’s effects are immediate, its benefits can be easily assessed, and it can be used on an as-needed basis by patients who need it only during periods of prolonged orthostatic stress. Binders are also easy to fit and are available in most sporting good stores and on the Web (try searching for “abdominal binder”).

The full article is here http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/ .

I hope Dr Grubb will have some good tips for you! Please share if he does

[looneymom]

Hi Justin,

Have you seen any doctors in other medical fields? Like Relaxed mentioned in her post. Do you get sick very easily? Have food allergies? Were you sickly as a child and caught everything around? If so, you might want to go see a board certified immunologist or endocrinologist. My son has not responded to the POTS medications. Recently, my son had some immune testing that indicated problems with his immune system. Maybe seeing a different doctor would provide some more answers for you.

Rachel

[spinner]

There are many of us. I dont have class POTS. My cardio events are not usually an explosion of heartbeat, low blood volume,

or BP problems. In fact i have brady cardia usually--low beats.

Ive never actually fainted straight out although thousands of times ive felt like i was going to do so.

I also had sudden onset, im guessing brought on by severe interruption of my autonomic/sympathetic nervous system initially

caused by leaky gut and sleep apnea.

I have beyond severe heat intolerance. I went from a tennis player to only walking and NEVER suddenly exerting.

I get dizzy and weak.

I have shortness of breath.

Ive learned to manage with a myriad of things but i also use klonapin-----amazingly this drug helps so many people

with chronic illness. It seems to bind to nerve receptors in the central nervous system.

Im also a big believer that we ALL have co-existing syndromes. Allergies, leaky gut, apnea, deficiencies, hormones,

vessel constriction, thyroid, and on and on.

[yogini]

I think there are a ton of people here on the forum who have NCS or a form other than POTS. I researched this condition 10 years ago when I got sick, so I am not up on the very latest. But last I'd heard the treatment for POTS and NCS are largely the same. I don't know whether Dr. Levine's protocol is specific to POTS , but it sounds intimidating to most of us.