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Orthostatic head/chest pressure w/SOB?


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I'm new and this is just my second post. I'm  still waiting on some test results and discussion of them with my doctors. I get an EMG Tuesday.  I wanted to ask if anyone else has had this symptom: For the past few days, I have tremendous head and chest pressure (not pain), extreme fatigue (seriously feel like I'm going to lose consciousness or drift into a coma at times), and shortness of breath.  It's pretty frightening because I feel there is something very wrong but I cannot figure out what it is. All these symptoms get far worse when I'm upright. My blood pressure and heart rate, however, are pretty normal.  Actually, my heart rate is low (50s-60s) and my heart skips beats after eating.  I'm wondering if the bradycardia is because I am so fatigued. I feel like I have the flu but no fever or cold symptoms -  just run down, body aches and stiffness. The symptoms have a pretty much kept me in bed ridden except for getting something to eat and going to the bathroom. I went to an urgent care facility a few days ago and my CBC and electrolytes were normal,  except for being slightly anemic which I always am. 

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Yes I do get chest pressure. It also feels like the vessels in my neck are constricted.  And it progressed eventually to feeling like my heart was a water balloon that was going to burst. I have recently started mestinon (pyridostigmine ) and the most noticeable benefit from this med for me has been that these symptoms are 90% relieved although my heart rate hasn't come down yet but I'm still on a very low dose.

I do also experience extreme fatigue and have been diagnosed through a daytime sleep study with severe daytime hypersomnia. It is severe enough some days that I feel like I've been given general anesthesia. I wish I had a good answer for you on how to deal with this but the only thing that works for me is to sleep until my body naturally wakes up. During these episodes, I also become shivering cold and can not warm up by any mode other than sleeping. When I wake up I am warm again and the anesthesia feeling has gone away.

Edited by Katybug
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Thanks for your response, Katybug! I've had the neck vessel constriction feeling too. I've often said that I feel like my neck is filled with cotton. There's a sense of swelling/stuffiness that can't be seen. My cardiologist did mention the possibility of trying me on mestinon, depending on the outcome of my additional neurological testing. Interesting that you mention feeling like you've been given general anesthesia. That sounds very much like what I mean about feeling half-conscious/drifting into a coma. One neurologist suggested that I have narcolepsy and cataplexy, and wanted to prescribe Provigil for daytime and a TCA for nighttime. I have so much severe anxiety and I can't even tolerate the caffeine in half a cup of green tea without having hours long severe panic, so I'm too scared to attempt the Provigil. I'm also unwilling to use a TCA because I don't want to make my sexual dysfunction any worse than it already is. I'm hoping to get another sleep study that focuses on brain waves instead of obstructive apnea (which was negative). I'm just so scared until I get some concrete answers about what is happening to me and (hopefully) why. 

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  • 4 weeks later...
On 8/20/2016 at 5:43 PM, Rainy said:

I'm new and this is just my second post. I'm  still waiting on some test results and discussion of them with my doctors. I get an EMG Tuesday.  I wanted to ask if anyone else has had this symptom: For the past few days, I have tremendous head and chest pressure (not pain), extreme fatigue (seriously feel like I'm going to lose consciousness or drift into a coma at times), and shortness of breath.  It's pretty frightening because I feel there is something very wrong but I cannot figure out what it is. All these symptoms get far worse when I'm upright. My blood pressure and heart rate, however, are pretty normal.  Actually, my heart rate is low (50s-60s) and my heart skips beats after eating.  I'm wondering if the bradycardia is because I am so fatigued. I feel like I have the flu but no fever or cold symptoms -  just run down, body aches and stiffness. The symptoms have a pretty much kept me in bed ridden except for getting something to eat and going to the bathroom. I went to an urgent care facility a few days ago and my CBC and electrolytes were normal,  except for being slightly anemic which I always am. 

Hi there, I as well get chest pressure/pain and shortness of breath. I have wondered about this myself as all my lung test have come back ok and my heart test except for a little bit of elevated pressure in the heart. I wondered about this and if there was soemthing else causing this that we are unaware of and now I have an idea its the POTS. I do get fatigued I am chronic anemic and have lupus so that does not help but I just got put on a beta blocker and that is supposed to help not sure yet if it is I have not been on it that long but I sure am lightheaded on it more than before so we will see. I know the feeling feeling sick alot it stinks. I guess this is common with this disorder from what I have heard.I hope that you feel better soon

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Hi, thanks for your response.  I just recently saw another doctor that specializes in dysautonomia. He told me that these symptoms are a parasympathetic response to the overactive sympathetic response. He thinks I produce too much compensatory adrenaline because I'm so fatigued but since I don't sleep well it has been a vicious cycle perpetuating and exacerbating the dysfunction for a very long time, getting me more and more run down. He also just prescribed a beta blocker which I will start tonight. I also have RA, anemia, and reactivated Epstein-Barr which don't help.

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Hey Rainy, how are you? I have the chest pressure as well, especially when I'm tired like late at night. Then again, I haven't been diagnosed yet but do have symptoms that seem to point to POTS. That's interesting your doc thinks you're producing too much adrenaline. I didn't know POTS could do that. My heart does feel like a fight or flight response when it goes insane (similar to an adrenaline rush), it just seems to happen without me being nervous or scared, which is what makes it abnormal. 

Hugs,

Percy

Oh BTW, I was given beta blockers as well but decided not to take them because I'm scared it will lower my BP even further but if your doc thinks it's OK to take them despite low BP it might be worth a shot for me as well :)

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  • 2 weeks later...

Hi Percy,

i started the beta blocker at a very low dose (Metropolol ER 12.5mg morning and evening) and I don't think it's lowered my blood pressure or heart rate, but it does seem to help my adrenaline over-response and deep sleep. 

You might want to read the book The Dysautonomia Project. I found it very helpful and it explains the adrenaline response. 

Hugs to you!

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