Exercise intolerance? Please help!

[maj20]

Hi. I have been diagnosed with asthma for 18 years. I also have POTS and an autoimmune condition. I have been unable to engage in any physical activity because I become so sick that I can't function for up to a day or two afterwards. I get very tight in the back and chest and feel like the air isn't going deep enough. I become completely exhausted physically.I feel washed out, like something the cat has dragged in. I can't sleep afterwards because my breathing is not right, and my body won't let me fall asleep. I have an incredible urge to drink liquids. Frequently, as things start to improve, I get congested and my nose runs. I get some chest congestion as well. Sometimes, just working long hours and being on my feet for long periods wil set this off. The only thing that seems to help is 15 mg of prednisone, which stops the whole thing entirely. No one seems to know what this is or what to suggest to stop this. I can barely walk 6 blocks without this happening. I take double the recommended dose of a strong inhaled steroid as well as advair. I take allegra and accolate.I use a rescue inhaler and meds via nebulizer.  Still, it is not enough.Please help! What is this? What can I do to stop it? Is there anyone else experiencing this?

[maj20]

Thank you Dr. Tinkelman! My cardiologist suggested this dx as being responsible also, but I was so stuck on it being asthma I didn't quite believe him. Now that I have done some research following your post, I can see that you are most likely correct. Can you suggest someone in NYC? How is this treated? I have had this since I am 17...I am now in my 30's. Can I expect improvement?Thank you for your help. I can't tell you how many doctors I have seen who have just told me I am crazy......

[David Tinkelman, M.D.]

Please go to the following Mayo Clinic website for a comprehensive discussion of POTS.  From my reading of this report, most if not all of the symptoms you experience can be explained by the diagnosis of POTS.  It is most important, however that you and your doctors do not make the mistake of automatically attributing a specific symptom to POTS, as there may be another readily treatable cause; for example, “an incredible urge to drink liquids” could be a sign of diabetes mellitus.  Or, another example, “being barely able to walk 6 blocks could be on the basis of exercise induced asthma or heart disease.  It would be most important that your asthma be optimally treated and that your doctors carefully check your heart to be sure that you do not have heart failure or abnormal heart rhythms, unrelated to POTS.  You may wish to seek a second opinion from an asthma specialist to be sure that your asthma treatment is optimum.

My final strong advice is that you seek a 2nd opinion regarding the treatment of POTS.  This illness is having and will continue to have a major impact on your quality of life.  You cannot afford to not seek the best expert advice available.  Do not hesitate to travel .  

Should Boston be more convenient for you, than Dallas or the Mayo Clinic,  I suggest that you contact Dr. Gordon H. Williams (one of the investigators on the second abstract, below), at the Brigham and Women's Hospital Harvard Medical School, Boston, MA.

Good luck,


See the following, two of which are from the Mayo Clinic:

Exercise Training in Postural Orthostatic Tachycardia Syndrome: Blocking the Urge to Block [beta]-Receptors?
Joyner, Michael J.
Author Information
From the Department of Anesthesiology, Mayo Clinic, Rochester, MN.
The opinions expressed in this editorial are not necessarily those of the editors or of the American Heart Association.
Correspondence to Michael J. Joyner, Department of Anesthesiology, Mayo Clinic, 200 First Street SW, Rochester, MN 55905. E-mail joyner.***@****

Exercise Training Versus Propranolol in the Treatment of the Postural Orthostatic Tachycardia Syndrome
Fu, Qi; VanGundy, Tiffany B.; Shibata, Shigeki; Auchus, Richard J.; Williams, Gordon H.; Levine, Benjamin D.
Author Information
From the Institute for Exercise and Environmental Medicine (Q.F., T.B.V., S.S., B.D.L.), Texas Health Presbyterian Hospital Dallas, Dallas, TX; University of Texas Southwestern Medical Center at Dallas (Q.F., S.S., R.J.A., B.D.L.), Dallas, TX; Brigham and Women's Hospital (G.H.W.), Harvard Medical School, Boston, MA.
Correspondence to Qi Fu, Institute for Exercise and Environmental Medicine, Texas Health Presbyterian Hospital Dallas, 7232 Greenville Ave, Suite 435, Dallas, TX 75231. E-mail ***@****

TitlePostural orthostatic tachycardia syndrome: a clinical review. [Review] [50 refs]
Johnson JN. Mack KJ. Kuntz NL. Brands CK. Porter CJ. Fischer PR.
InstitutionDivision of Pediatric Cardiology, Department of Pediatric and Adolescent Medicine, Mayo Clinic, Rochester, Minnesota, USA. Johnson.***@****

[ill13632]

I'm helped a lot by a bipap machine and O2 machine to sleep on at night.  for my insomnia I've been taking ambien

[ill13632]

I'm so sorry to hear about your conditions.  I have asthma which is bad right now because of this respiratory infection.  I've been looking into xolair but don't know how safe it is- it seems to be effective for a lot of people.