Having A Tough Time. Sound Like Dysautonomia?

[Xhale1991]

Hey guys. This is my first post here. I've been have a really rough year in terms of my health, and haven't gotten any answers from doctors. I came across dysautonomia a few weeks ago, and am pretty convinced this is what I have.

I am 21 years old, male, very athletic and in good shape. Around a year ago i started noticing a decrease in my ability to lift at the gym. My strength was evaporating week by week. This continued for a few months until I became unable to workout at all. Whever I start exerting myself physically I get very lightheaded, and get lots of cold sweats. Mind you, I am in very good physical condition, so this is very abnormal for me. On days I do manage to eek out somewhat of an exercise, I always feel sick after. Like I have the flu. In addition to an inability to exercise, I have severe fatigue all throughout the day. Some days it's so bad I literally feel on the verge of death. It's way beyond just a "tiredness". Some days will be noticeable worse than others in regards to my fatigue and all the other symptoms.

My body temperature is all over the place. My hands and feet are the majority of the time ICE cold. I am very sensitive to the cold weather. But then other times I will be very sensitve to the hot weather and I start sweating uncontrollably under normal temperatures.

I've developed depression, lots of anxiety, and my memory is getting pretty bad. Not sure if these are related??......

I also have postural hypotension. This as well has been progressively getting worse. After I stand up from laying down, I get extremely lighthead very quickly and come close to blacking out. It happens just about every time I go from laying down to standing now.

My pulse is very sporadic. Often times it will beat very fast, and other times it will beat very slow. It also has a very heavy feeling. Hard to describe. My pulse will be normal, but i feel each beat in my chest like it is pumping VERY hard. When anxious the tachycardia becomes especially bad.

I have been to at least 6 doctors over the last few months, and have gotten no answers. First they thought I might have diabetes, then chronic fatigue, then fibro, now I'm just stuck in limbo and still have no idea what it can be.

Does it sound like I may have a dysautonomia condition? It's not something a doctor ever suggested may be the issue, but after researching myself, I truly believe this is the issue.

I live in Scottsdale AZ so if you can know of any good doctors or clinics here please recommend them.

[Guest Hanice]

I'm not sure.. but I just recently posted up a thrwad on eating fats that I think you would like to read since you're ab athlete and probably dont eat enough fat. I hope you get better.

[dkd]

Have you seen a cardiologist? Specifically an electrophysiologist? That's who diagnosed me after he did a tilt table test. Have you had one of those?

I had been to: my general practitioner, a general cardiologist, a neurologist, ear nose throat doc, endocrinologist, gastroenterologist, and then finally an electrophysiologist and he put it all together.

If you haven't been to an EP yet, maybe that should be your next step.

[Guest Alex]

Xhale,

welcome to dinet.

While I'm not a doctor some of the problems you are describing sound awfully similar to mine - particularly the all over the place HR and the "heavy" chest feeling.

Have you ever considered doing a "poor man's tilt table test" set of vitals? You need a BP monitor for that and the way to do this is quite simple. You check your BP and your HR lying down then you stand and check your BP and HR after 1, 3, 5 and 10 min of standing. An increase in HR of over 30 bpm while the BP is almost the same is usually indicative of POTS. In some cases the BP drops significantly with orthostatic stress, while others report an increase in BP upon standing. See more here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

Any chance you can get a referral to a dysautonomia specialist? They can conduct the appropriate testing and after ruling out a bunch of other conditions they can help you get the right diagnosis. Given that you're in Scottsdale, I'd think the Mayo Clinic.

You've also mentioned anxiety - I was diagnosed with anxiety prior to my official POTS diagnosis and I have found a few techniques that help: deep diaphragmatic breathing, progressive muscle relaxation, meditation and visualization. You can search the net for any of these techniques, there are many resources available that you can access for free.

Best of luck,

Alex

[looneymom]

Hi and welcome to the forum. It does sound like you need to seek out a second opinion. The MAYO clinic in Arizona should be able to help you. Hopefully someone can give you the name of a doctor there. My son went to the MAYO clinic in Rochester and was diagnosed with POTS there. Your symptoms sound very familiar and anxiety is not the diagnosis. However, you may feel that due to all the symptoms that you are experiencing.

Rachel

[Xhale1991]

Thanks for the help guys.

I have an appointment at MAYO in the next few weeks. Hopefully they will give me some answers and I can get to the bottom of this.

Is their a reliable treatment for dysautonomia that will get me back to my old self or are those days over?

Also, what aspect of this disease causes the fatigue.

[Guest Alex]

Unfortunately, treatment for dysautonomia is a lot of trial and error. No 2 patients are alike in their presentation or in their response to treatment. Some rigorous testing though should provide your doctors with the necessary clues as to what treatment may work best for you.

If you haven't seen it yet, check dinet's page on what helps (meds and non-pharmaceutical options) http://www.dinet.org/what_helps.htm

The fatigue...one theory behind the fatigue associated with dysautonomia is the sympathetic hyperactivity and the corresponding decreased parasympathetic activity. Also, some vitamin and mineral deficiencies may play a role: specifically vit D, vit B (B12 in particular), iron. Another cause for the fatigue can be the low blood pressure and the associated cerebral hypoperfusion (even though hypoperfusion can also occur in individuals with normal BP).

Best of luck at Mayo and keep us in the loop.

Alex

[arizona girl]

Welcome!

Since your already going to Scottsdale Mayo. The doc to see there is Dr. Goodman. He can do the appropriate autonomic and diagnostic tests. Lots of different things can cause dysautonomia. You may be able to rule some of those out at mayo.

I live in chandler and grew up in scottsdale. If you get stuck let me know. I've slowly managed to put a team of docs together here. We have several members that also live here. So your not alone with the illness or here in arizona.

[Xhale1991]

Welcome!

Since your already going to Scottsdale Mayo. The doc to see there is Dr. Goodman. He can do the appropriate autonomic and diagnostic tests. Lots of different things can cause dysautonomia. You may be able to rule some of those out at mayo.

I live in chandler and grew up in scottsdale. If you get stuck let me know. I've slowly managed to put a team of docs together here. We have several members that also live here. So your not alone with the illness or here in arizona.

I may take you up on that. Thanks a ton. I've been lost in terms of knowing who to see.

Also, thank you Alex!

[badhbt]

I also agree with Hanice and Alex on nutritional deficiencies. I have a feeling they can play into the picture especially with athletic people.

[Chaos]

You're really lucky living in Scottsdale as Dr. Goodman is great! He's in the neurology dept at Mayo. You have to jump thru a few hoops to see him though as he is "in demand" as one of the few specialists in dysautonomia on this side of the country. If you see another doc at Mayo though that might help you get a referral to him. Coming in from the outside to see him may be different.

As others have said, nutritional deficiencies may be important.... particularly B vitamins as they play a crucial role in energy metabolism. Here is an incredibly detailed link on B vitamins/methylation disorders that you can read if you have nothing else to do. http://howirecovered.com/active-b12-therapy-faq/#methylation-and-CFS%C2'>

[corina]

Hi Xhale, welcome to the forum! I was going to suggest Mayo Scottsdale but you've already been pointed there. Good luck on your tests!

[badhbt]

Chaos,

Could you post the article again? I would love to read it

Thank you

[Chaos]

http://howirecovered.com/active-b12-therapy-faq/

Try again here. Not sure why so many of my links keep getting dropped by the system when I try to attach them these days. Sorry !

[Freaked]

Really sounds like dysautonomia to me (orthostatic hypotension in someone of your age is mostly considered a form of dysautonomia in and of itself). Unless they find something else underlying (which they probably won't if they haven't at this point), I'd say you're very likely to be diagnosed.

[Xhale1991]

Hey guys. Quick update.

My appointment at Mayo is in 3 more months, and I don't feel as if I can wait that long. Are there any preliminary tests or doctors i can see before I see Dr Goodman? Maybe some meds i can start that will help me to feel better.

The fatigue/brain fog/ is so bad lately that I can't even function.

[KareBear]

I dont know what your specific symptoms are or what meds you take currently but there is a section on this website that lists things that help, including over the counter non-pharmaceutical things. Motrin is a good one in helping increase BP and if you need more salt intake you can buy them at your local pharmacy. These are just ideas of course, i dont know your specific case. 3 months is a long time to wait, I agree, but I would also be careful not to start any regimen that could alter your test results. Hope you find something that works for you!