Pots and chest pain/ shortness of breath/ possible pulmonary hypertension

[Joey2324]

Hi, My name is joey and i am 26 years old. I fell ill with a myriad of horrible symptoms almost 2 years ago (20months). I had had postural tachy, still do; horrible adrenaline surges, feeling like I had the flu and adrenaline, but literally all the time, not episodic; basically fill like I wanted to die, literally. I wasn't in panick just pain, but the sy,proms debilitated me and consequently caused panic. So, I was like this, acutely, for about 8 months, then made a truly good recovery. Felt pretty much symptoms free for about 6-7 months.... Anyway, I feel ill again, about 4 months ago, and now I recently had an echo done on my heart ( bSically an ultrasound of heart) because of the chest pain and shortness of breath I had, again. Even though you've experienced the pain once, once it comes around again, especially after feeling good for about half a year, I guess you never get used to the pain/ symptoms when they come back. Anyway, this echo results show an enlarged hear and a pulmonary pressure of about 30. My cardiologist didn't even ,emotion this to me, all he brought was the cardia enlargmenqt, which he wasn't concerned about really. He made it seem common.. Which it very well could be.. Anyway, so now I don't know what to think. I think to ,y self, I had all these test done almost two years ago when I first fell ill, and all test would come back" normal" ; I even an an echo done at that time as well and my heart wasn't enlarged, and my pulmonary pressure from what I know was okay. Oh and also, I still haven't been officially diagnosed with anything  yet. I know I have something but I don't know what it is. Anyway, I was just Hoping anyone could probably give me some insight. If at all. It's hards to believe that my echo results can be isolated from everything else that is going on.... Thanks

[kfailoni]

I don't know if you will see this, but I was the same age as you when I was diagnosed with POTS, and your symptoms sound identical. If at all possible, try to get in at the Cleveland Clinic, they're the team that helped me. I was diagnosed with POTS my first day and set up with a cardiac rehab program specific to my body and needs.

If you can't make it out to Cleveland, try to find a hospital in your area that has cardiac rehab, and talk to your primary doctor about helping you get set up with them. (If you're in the Denver area by any stroke of luck, go to Lutheran Hospital and tell them Kim sent you. Or, if you're in Portland check out OHSU. Their cardiac program also has a cardio-pulmonary rehab unit that's supposed to be really good.) The protocol you want your doctors to follow is the Levine Protocol. It was designed by Dr. Levine in Texas (so if you're down there, find him.) and it worked miracles on me.

The idea behind the Levine protocol is to slowly retrain your Vagus nerve, which is the cause of the symptoms. Please bear in mind that you HAVE to be patient with yourself during the first stages. I didn't see any improvement for the first six weeks, but the team at the Cleveland Clinic warned me so I didn't give up. After those first weeks though, I started seeing improvement on almost a daily basis. You can get there, just stick it out. All of this *****, and I'm so sorry it's happening to so many people before the medicine has caught up. If you want to see my story my blog is here kimberlie-failoni.blogspot.com and if you need/want to contact me, my info is there. Best of luck!!

[Heiferly]

In case you haven't seen this, thought you might like to look it over:

http://www.medhelp.org/tags/health_page/24598/POTS-Dysautonomia/Dysautonomia-Treatments?hp_id=171

Let me know if you have questions. <3 H.

[queenofhearts316]

Hi Raisin1..I was hoping you could give me some advice.It is suspected I have pots but the drs here aren't very familiar with it.My heart races sometimes just from standing up the highest I have seen it is 187 from simply walking up a few stairs. I also am tired and pale and out of breath. My symptoms are worse near my period. I was wondering how you manage your symptoms? I am okay some days but I find it very difficult at work. I am only 22 and hate feeling disabled by this. Any advice is much appreciated!

[Raisin1]

Hello Joey! I hope you still get this answer as it has been awhile since you posted. I was diagnosed with Pots Syndrome and autonomic neuropathy. This is done with a tilt table test. It sounds very similar to what you are experiencing. There is also something called pulmonary hypertension that can cause symptoms such as yours and can mimic Dysautonomia. Cleveland Clinic and Mayo are very familiar with these disorders. I hope you get the help you need and feel better. Prayers to you!