Ever Feel Like You Might Be Dying?

[misstraci]

I'm sorry for everyone who feels this way and I can definitely relate because I feel way too often like I'm dying. I say it outloud to family and friends and I am being 100% honest when I say it, but I don't think they are taking me seriously. I'm glad I haven't and I hope that it is a long ways off because I fear death. But most days, maybe not the entire 24hr straight, but for a portion of the day, I feel like I am truly dying. How can anyone feel this way and be ok I think to myself. How can my heart do that and my head feel that way and nothing be wrong. How can whatever is attacking my body be "just POTS" and written off so easily by all the dr's I've ever encountered. How can they tell me it's something I have to learn to live with, They have no idea the quality of life I live or lack there of really. I know I should not envy others, but I do! I see everyone living their lives, going grocery shopping, enjoying their kids, driving, breathing, just being and although they could have their own ailments going on, you know a good majority do not, they are happy and healthy and i want that. I just want to live and feel good, i don't want anything fancy, i don't need to be 100%. I just want to live and not feel like death.

[MomtoGiuliana]

I'm sorry Naomi for what you are going through. When I was very sick I definitely remember feeling that it was possible I would die b/c the symptoms were so severe.

I hope you can get to the bottom of your new symptoms and you feel a lot better soon.

My mother had hyperparathyroidism and one of her symptoms was high calcium. This can cause other symptoms including severe headaches, aches and pains and perhaps other symptoms. I would think that having this along w POTS could make POTS worse. I hope you can get this evaluated fully soon.

[HopeSprings]

Momtoguiliana- I called that Dr's office today and talked to the nurse. I asked about the high calcium and hyperparathyroidism etc. and she said she had the same thought, but didn't mention it to the Doctor. Now why are nurses and patients thinking about these things, but Doctors aren't? Anyway, she said come back in tomorrow and we'll test the calcium again and do the PTH. She seems to have the freedom to decide what blood work to order - I've never seen that before! It's probably a long shot, but worth a look I think.

Traci - yes, exactly to everything you said.

[jem15]

Yeah, like others have said, sometimes when something else is off/going on, I feel like that, like something is really wrong. Also, just being sick for 17yrs now and slowly getting worse from year to year, I wonder what will keep happening as I get older. I already cant tolerate many meds, and keep getting new symptoms or worsening of symptoms that dont go away.

So yeah, when you say "How can new symptoms STILL be coming years later???" .. i hear ya... in fact just today i went to the ENT due to having the sensation that something is stuck in my throat on the one side, for like 6mo. and funny enough he thinks it's probably caused by autonomic dysfunction and one of the nerves acting up. Also, I have a reduced sense of smell for about a year now, and they attribute that to autonomic dysfunction as well. Seemingly small symptoms in comparison to everything else we feel, but it's just disturbing that these random new symptoms come up, and there's not much they can do. Today the doctor was talking about how post-viral neuropathy can cause these things when it affects the autonomic nerves, since they control so many things.. and this was before he even knew that I had post viral onset all those years ago. But it made me wonder, why if I got sick 17 yrs ago after a virus, would I still be getting symptoms now? does the damage just become progressive over time? So weird and frustrating to have these mystery conditions. And also so scary when symptoms just keep getting worse. The past 3 weeks my symptoms have been worse/weird, and I cant pinpoint what it is. I thought maybe the usual culprits.. i was getting sick... i've overpushed.. or that I started a new med.. but it seems these things should be ruled out by now and I'm still weird. I share your frustration, it's hard to hang in there sometimes when things just keep getting worse and we have no answers or help.

hopefully with some extra rest and pacing, your symptoms can at least get back to baseline. Ha, that's my new goal now.. better pacing.. it's always a goal.. but in times like this when symptoms are high adn there's nothing i can do or figure out.. increased rest/pacing seems to be the only hope for getting things to calm down, though it's not working as well right now, but maybe that means i'm still doing too much. But I digress... hope you feel better soon, hang in there!

[Lemons2lemonade]

Every. Single. Day. I think it is the fight or flight response going off that creates that feeling. It seems like once a certain threshold is reached with those feelings, there's no going back. The best i have found is just taking a deep breath, and saying i'm not going to die. If i were going to die, it would have happened by now.

[sue1234]

Naomi, good that your nurse/doctor are going to test that! Let us know what you find out.

[Guest maia]

Yes, right now. big hug to you!

[Relax86]

Every. Single. Day. I think it is the fight or flight response going off that creates that feeling. It seems like once a certain threshold is reached with those feelings, there's no going back. The best i have found is just taking a deep breath, and saying i'm not going to die. If i were going to die, it would have happened by now.

My feelings exactly. For as terrible as this year has been if I'm a goner then it would be over by now. It's a crappy way to push on but for me pushing thru the fear and anxiety is one of the best ways to get in front of POTs...it only makes me worse.

[targs66]

Naomi - so sorry to hear you are feeling this way. Like everyone else, I can so relate. It just seems mindboggling that one can feel this rotten "Every.Single.Day." as Lemons said and yet no one can do anything about it.

I really hope you get some info on the calcium/Vitamin D situation. I am another one with very low vitamin D who cannot tolerate vitamin D supplements. I've only gotten funny looks from doctors when I say this and the usual "No, it won't make you feel bad" so for the millionth time I am eternally grateful for this forum and the people on it!! I have only taken the non-prescription form (cholecaliferol), not the prescription form (calcitriol), so I don't know if that would make a difference.

Please do keep us posted on what you find out about your calcium levels. And - I hope you're feeling better.

[NMPotsie]

So sorry you are going through this, Naomi. I have had many days where I felt I was absolutely going to die and that they had missed something. I tried to do research to figure it out and the stupid internet always diagnosis me with cancer, which just adds to the fear. Like others I notice that when my immune system is fighting something I become much more symptomatic, with all kinds of things I don't normally have when I'm not ill. I can tell from my pots symptoms that I'm sick, and I go in complaining and they do a cbc and sure enough my white count is elevated.

I don't want to be an alarmist, but some of the symptoms you mentioned would concern me about MS. If it were me, I would ask for an MRI if you haven't had one recently just to rule it out. I'm sure you are "fine" as far as you can be and are probably just experiencing pots weirdness, but some of those symptoms would concern me in that regard because they don't sound like "normal" pots symptoms (of course, there's really no such thing so...). Just my 2 cents, for peace of mind.