Another Trip To The Er

[Chrissy]

I have officially been diagnosed with POTS / Dysautonomia for 3 yrs. I am really having a tough time right now and need to know if you are experiencing the same thing. First off let me say that I did just have my tonsils and adnoids out a week ago but have been assured that my symptoms have nothing to do with that. I am 20 and have been told it is a difficult surgery to recover from for an adult. I did not have any problems with that as much as I have with my POTS symptoms. My whole experience with this condition started with severe chest pains and I know that it is part of it but what I am experiencing is different than that. I am having severe chest pain with stabbing pain in the heart. If I didn't know any better, I would say I was having a heart attack. I actually waited 4 days to see if it would pass before finally going to the ER last night. It has been my experience that they have no clue about my condition so ends up being a waste of time and money. But I was really getting scared. They ran a lot of tests (ekg's, CAT scan, labs, etc) all of which came back normal, of course! I know this condition is progressive and even though I have seen that, I am wondering if this is the next phase that I am going through. That is why I need to know if you have this sharp stabbing pain too and tightness in the chest. Like I said, it is different than the original chest pains I experienced with POTS. I have also been extremely short of breath even while laying down. I gasp for air when I talk, roll over, or any other activity worse than I have in the past. I look forward to your replies! I love this Forum because I can converse with people who understand and can relate. It is very frustrating to try to get the doctors to understand.

[flop]

Hi Chrissy,

sorry to hear that you are having such a rough time at the moment, hopefully you will feel a bit better soon.

I just wanted to pick up on something that you said in your post

I know this condition is progressive

- POTS itself is not usually a progressive illness. I know that members post about their health getting worse but often they are complicated cases with other diagnoses as well (such as Mitochondrial disease, Lyme disease, Ehlers-Danlos syndrome, periodic paralysis, pure autonomic failure etc). There are plenty of people who do get better from POTS (but once well you don't feel the need to post on a support group forum) or who get their symptoms under control with meds and lead full and active lives. Don't give up hope, you are still very young and a lot may change as your body finishes its development - I know you don't grow any taller but your body is still changing a lot inside.

Back to your recent surgery - any illness (cough / cold etc) or operation can put a lot of stress on your body. Healthy people feel unwell for a short while then bounce back to normal. For POTS people we often get hit much much harder as our bodies are already working overtime just to keep up with us when we are relatively well. Adding the stress of surgery can often trigger a POTS flare / crash / worsening of symptoms.

I had ENT surgery last year and I know it knocked me for six. It probably took me 8-10 weeks to start feeling back to normal again. The docs may well be correct that the chest pains aren't directly related to your surgery but it may be the case that the surgery is causing your POTS to flare and it may be the POTS that is causing the pains and other symptoms. It is very good news that your ER workup was normal - they will have checked for heart problems and surgery related problems like chest infection and pulmonary embolus.

I would let your PCP and your POTS doctor know about the symptoms that you are getting and see if they have any suggestions for treatments. As always make sure that you are drinking lots and eating a healthy diet with lots of salt. Make sure that you rest so your body can heal itself but try not to stay in bed during the day (this can lead to deconditioning). Try to get up to sit in a comfy armchair at least and let your legs rest on the floor regularly so that your body still has to work against gravity to get the blood back up from your feet.

Hugs,

Flop

[MightyMouse]

Ditto to what flop had to say. POTS needn't be progressive--even if VERY life changing.

BTW, I had several ER trips with extreme chest pain--it turned out to be related to my gallbladder. After a CCK-HIDA scan, it was finally (after 6 years!) found that my gallbladder had less than 30% function. I had it removed and my pain improved incredibly.

I hope you figure out what's causing the pain.

Nina

[Dawg Tired]

Yeah - I can't remember having any chest pain since my gallbladder being removed. It only took 11 years for them to decide it ws the problem! All of the tests they did on it came out "normal" too...

[Tessa]

Hi Chrissy

I know what you are going through because I had similar pain and ended at the ER too, thinking it was a heart attack... I had no idea of POTS at that time so it was really scary...

I have been having discomfort and chest pain for long together with the shortness of breath (though the shortness of breath not so severe as you mentioned).

Now I am being tested for adrenal insuffiency, which could be the clue. I am already on a minimun treatment for it and it works for me. I have no chest pain any more. The shortness of breath has gone too. Sometimes I feel unwell, with a light discomfort. I still cannot carry out many activities, but the minimum things I did before (having plenty of symptoms) can be done now without feeling dizzy, lightheaded, with chest discomfort/pain and shortness of breath... Which is a relief... But my treatment is a temporary one waiting for the final test results...

I am not an expert, but have you checked your adrenals? what about your blood pressure and heart rate? Do you know if you can have Adrenal Fatigue or a low aldosterone and/or cortisol level?

They can cause plenty of symptoms + POTS too.

I hope to have been of any help with my personal experience.

Take care,

Love,