Ever Feel Like You Might Be Dying?

[HopeSprings]

This week has been horrible. I have felt so ill - don't even have the strength in my fingers to type or mental clarity to go into all the symptoms and sensations. I go through periods where I feel so sick that I believe either I have some other illness (that can kill you) or that this one will. Does anyone else ever have these thoughts? Do you ever feel so sick and so strange that you wonder if you might not survive this? This isn't "wah, wah, I feel like death" - I mean this literally.

[Dizzysillyak]

Yes, I've felt that way many times since getting sick. Do you have a good gp ? The last time I felt that way I had h pylori

and parasites. I went in complaining that my oi had gotten worse all of the sudden. I was thinking it was

supposed to get progressively worse. Luckily my doctor didn't listen to me and ran tests to find out

what was happening.

Fwiw have you tried taking grapeseed extract or pau d arco or something else that would kill a bad bug

if you had one ? Or have you tried taking a strong probiotic or kefir ? Or have you tried a liver cleanse supplement ? Himalaya liver cleanse helps me sometimes.

It might be worth a try.

Jsyk tho, these wouldn't have helped my h pylori.

Hope you feel better soon. Tc .. D

[puppylove]

Hmmm... Yes, I guess. Well... I have felt really bad and had very scary sensations and I was afraid I would die. But I don't think I have ever truly felt like I was dying. I'm really sorry you feel so bad.

[hippychic258]

I have been thinking the same thing for 7 months every single day I fee like I am dying! Strange symptoms and sensations, I feel wired at times, head buzzing ears ringing, then other times I am so exhausted i can barely move. I feel like I have something else wrong with me like something is eating away at my nervous system. I hate waking up each day wondering what new adventure my body is going to take me on. Also I dont trust my body I can feel pretty good for a bit then wham mega symptoms. My worst symptoms right now are back neck and joint pain, extreme eye sensitivity gives me tremors, noise sensitivity, over stimulated by any conversation, I can't show any emotion it makes me sick. So yes I do feel like I am dying quit a bit. I am getting checked by a lyme specialist but not till Nov.

Naomi: Sorry you are going through this I totally know how you feel it is horrible, how long have you been sick? Are you bedridden at all? I will pray for you to get some relief.

What symptoms are you having?

[brethor9]

Hang in there Naomi ((((((huge hugs))))) yes I have been where you are and still have episodes.....the ones that scare me are my heart suddenly drops, my legs get really weak, lightheaded...it actually feels like my heart isn't pumping right and that is a new symptom I haven't had before. It gets so frustrating being told what we have isnt going to kill us but I swear sometimes it might have you been to your doc to get checked over? you could have something not even related to your POTS like a virus or something......

Bren

[diamondcut]

I was going to say this, i had a virus 2 weeks ago and i was in bed for that length of time and i felt like death, more so than a normal person that i went down to ER. The trouble with POTs is we feel so bad every day that things like a virus or a totally separate health issue can go undetected for days even weeks, as we think its part of the normal feeling crap. It took me about a week before i realsied that i had a terrible virus/infection with my white blood cell count very high. But i was carrying on like it was normal POTs things getting me down! Needless to say i crashed on the second week and couldnt eat or get out of bed. Maybe you should get your bloods checked.

Im so sorry you are feeling this way.

[hippychic258]

Bren- Another new symptom for you? ugh I feel for you!!!

[Kellysavedbygrace]

Yes. And for me it usually happens when I am having really bad circulation, palipitations or have been in bed for 3+days. And I'm sorry you feel so bad. I agree with the others and makes me wonder what has changed w your system. I'll make a mental note next time I feel this way to go get a CBC. May also want to check your Vit D level because I have low Vit D and when it is really bad I deal w bad mental fatigue.

When I saw that you posted this I was sad because you are so encouraging and helpful to me and so many others on this forum. I appreciate all the wisdom you have shared w me. Hang in there. You are not alone.

[Birdlady]

Yes I have definitely felt this before.

[spinner]

YES, thats a constant emotion that comes and goes through the week at various times. It can happen when youre alone and you have lot of time to think.

I have a theory about it. Our ANS is supposed to make us feel off when its not functioning perfectly--it was designed that way. Its similar to someone having a panic attack--that (false) panic is designed to get you moving to get help (all t hat adrenaline surge is the fight or flight).

With POTS the blood pooling gives you the feeeling like you cant move or breathe. Im learning over time that this is when i need to get moving any way I can---for for physical and psychoological reasons. Last night I felt awful, but went with a friend to swim at a health club. The first ten minutes was pretty bad, just getting used to breeathing right, but after then I hit my usual ephoria as the endorphins kicked in and did thier job. The cold water on my skin made me feel alive. The water pressure worked against the blood pooling.

I spent 50 min in the pool, and by the end of it I felt alive and well, and it lasted for several more hours after eating a light dinner. I cant say enough about swimming and it helps me in a way nothing else can. We have to keep working against blood pooling issues----its almost as if theyre the equivalent of very low serotonin in a depressed person. Bloodflow, cool air, hydration, a good friend or support group all help. Hope youre feeling better, all of us has been where youre at many times.

[brethor9]

Thanks Hippy yeah it seems I just get one stabalized and then get a new one....you just can't win with this illness

[HopeSprings]

I feel like I have something else wrong with me like something is eating away at my nervous system.

Yes, this is how I feel too. And this:

it actually feels like my heart isn't pumping right

Thank you all for responding, relating, being supportive. Only people who have this can possibly understand. The main things this week have been my head - waking up feeling a ton of pressure, like my head could possibly explode and weird numb sensations on the right side of my head, my heart feels like it's not pumping properly (different than the usual POTS stuff), more than usual difficulty with thinking, focusing my eyes and feeling like if I speak I'm not going to be able to enunciate the words - it is an effort to to use my mouth to form sentences (then I'm thinking is this what having a stroke feels like), this is new - buzzing in my left foot (like the vibration of a cell phone) (thoughts of MS come in), weird tingly feelings around my eye and different parts of my face, and there's more, but the thing that gives me the "am i dying" thought is the weakness - weak like you have the flu... needing to hold onto furniture to just get across the room. It's hard not to think maybe I have some other terrible illness that just isn't showing up on tests yet. It's not a fearful thing - it's not a panic feeling of I'm about to die - it's... these symptoms are so bad, something must be seriously wrong. It's a little better today - I would never have been able to type this if I was in that same state. As much as I hate to, I think I need to go back to square one, find a new neurologist and go over everything again. How can new symptoms STILL be coming years later???

[sue1234]

I understand. I have often thought I could get something serious like West Nile and maybe never know I am sick with it! I get days where my senses are soooo ramped up and overwhelmed. Light gets way too bright, noise is to loud, and I need to be in a calm environment. It is like my brain is on the verge of a seizure, and my body is beginning to tense the muscles for it. It's like being at the edge of the cliff and doing everything you can to not fall over.

BTW, me taking vitamin D has been the absolute worst. It brings on these symptoms and they last for a week. I'm not sure what the D does, but maybe make me go high or low in calcium. When I began the vit. D a few weeks ago, I was supposed to go do labs one week into it to see what my calcium was doing, but that's when we had the hurricane come over us, so I was late doing labs by about 5 days. I was beginning to feel better at that point. My calcium was at 9.1, which is normal, but the low range is something like 8.8 on my paper. So, I am now curious if it had been lower and that gave me symptoms.

[hippychic258]

Naomi: Every symptom you have mentioned I have had the last 7 months and then some. They have really kept me down more than the "Tachycardia". Like you I feel like I have something else wrong like a virus lurking, who knows and I feel like doctors are not going to be able to figure it out. I have days where I feel better than others. I hope this passes quickly for you and you have some better days

Are you on any meds? and how long have you been sick?

Sue: I feel the same way as you described. I see you have been sick since 2006 and still have these symptoms, that is what makes me think Lyme, west nile and any other weird virus could be affecting these symptoms.

[Sheila1366]

Oh yes. I have gastropareisis also, so that added to dysautonomia I have felt many times I would just stop breathing at night.nausea and pain has been so bad I felt surely I was dying. have had many a cry spell over this which is not good cause it makes breathing and pain worse. It is very scary.

[E Soskis]

I have been near death several times - I once woke up in the ER with the full crash team standing over me and the defibrillator at my side - the doctor yelling at me "why is your heart doing weird things"....what did I say? "because it wants to!" - ... After my last near death experience, I am at complete peace - it was a harrowing ride to the hospital with me barely conscious in the back seat, heart rate dropping 20's and below - I finally let it all go and handed myself over to God. At that moment, I felt a radiant light surround me, wrap me tight and soothe my trembling soul. It felt like my head was lifted and placed in a great big "lap" - I felt my hair being stroked and "heard" soothing words of comfort. From that experience on, I know whatever the future holds for me, it is OK - all of this is bigger than I am and my God is in control. Naomi, I am so sorry you are feeling terrible - we have a terrible disease- we feel terrible most of the time yet, I am grateful for the little taste I had of what is beyond the veil - I truly know that there are more around us who are for us than the ones against us!

[HopeSprings]

Pam - I've had this for years and I'm not on meds because I haven't found anything that doesn't cause immediate bad side effects. I have two little kids and have to be as functional as possible - no luxury of working through or waiting out side effects.

I was recently seen by a new internist and he did some routine blood work. The only things that came back off were low Vitamin D, a high Calcium (10.6) and a low 24 urine chloride. He said to up the Vitamin D, re-check the calcium in 3 months and "if I'm concerned" I can see a nephrologist about the Iow chloride. I don't know if I should dig deeper into these. It usually gets me nothing but frustration.

Sue - I don't know what's up with the Vitamin D. I think it's really weird how many of us are low and can't get our levels up or react badly to it.

[AmberK]

Yes I have, especially early on in the illness when the sensations were so new and terrifying. You just think it's not possible to feel that ill and survive it, especially when it's a severe spell. I'm so sorry you're feeling so ill.

[sue1234]

Naomi, he didn't say anything about your high calcium? Upping your vitamin D, I believe, will just make the calcium go higher. Have they thought of testing your PTH and ionized calcium along with your calcium?

I have never had high calcium issues, but I have had a few episodes of calcium in the 7s (normal 8.8 or higher). I might need to bring this up at my next bone doctor visit. Something has always been wrong with the way I process calcium and vitamin D.

[HopeSprings]

Naomi, he didn't say anything about your high calcium? Upping your vitamin D, I believe, will just make the calcium go higher. Have they thought of testing your PTH and ionized calcium along with your calcium?

No, the nurse just said oh the calcium is a little high - like no big deal. I thought about asking to have the PTH tested, but it's so hard with a new Dr. - I don't know what kind of reaction I'd get asking for all sorts of specific bloodwork. They might think I'm a crazy person. What is ionized calcium?

[Birdlady]

Naomi,

You might want to read this website. High calcium is never normal.

http://www.parathyroid.com/

[issie]

Naomi,

I'm starting to sort out some of the same feelings that you're having. I think some of the face numbness and other sensations are from allergies. Since I'm really paying attention to what I'm eating and what supplements I'm using. . . .I'm being able to connect it to that. Since finding out that I have a CBS mutation on the methylation pathway ---this makes me sensitive to and not processing sulphates and sulphites correctly. Since trying to cut those out and also other foods that I know I'm sensitive to ---I can notice when I eat even a little bit . . . .since being off for awhile . . .that the symptoms come with the intake of something. I found out that even gelatin capsules -----like nearly every pill is in -----could potentially cause an issue. I'm not that sensitive . . .but, have been in touch with someone who is and has to use epi pens quite regularly. Some of it is MCAS related.

I figured out that Benadryl, Zyertec and Allegra give me horrible tachy issues. The only H1 I can use - is Claritin. I'm not using it regularly - but, trying to keep things at bay with quercetin, olive leaf, turmeric and nasal crom. I have had to take claritian and zantac some of the time, however. It is a lot to sort out and figure out.

With you having high calcium and chloride . . .I'd make sure to keep a watch on your kidney function. I've recently discovered that I have real issues with mine.

As for the questions about things "Still" showing up. Sometimes, it takes things getting worse for science to be able to detect it. I think most of us are so sensitive we detect it way earlier than a test can pick it up.

Hang In There all. We are all in imperfect bodies . . . but, maybe we can find a purple band-aid to give us a little more quality of life. Lets "HOPE" so!!!

Issie

[HopeSprings]

As for the questions about things "Still" showing up. Sometimes, it takes things getting worse for science to be able to detect it. I think most of us are so sensitive we detect it way earlier than a test can pick it up.

Yes, Issie, I keep thinking this! I want some movement here - either for things to get better OR if things need to get worse, bad enough to finally show up on a test, I'll take that. My fear is being stuck exactly like this forever or for things to get progressively worse and they STILL can't figure it out and I die never knowing what killed me. It sounds so morbid and probably dramatic, but when you live like this for a long time these seem like real possibilities. I'll stop complaining now. It's great you're making progress in figuring out what your issues are - it's such a puzzle!

[Jan]

When I first got POTS I often felt like I was dying. It was the only way I could explain how I felt. One time I told my doctor "I feel like my life light is flickering and about to go out." I believe that what was causing the feeling was really low blood pressure and all the symptoms that come with that.

My blood pressure rarely gets as low as it did now that I am on Florinef, so I rarely feel like I am dying anymore.

I am really sorry you have to experience this, it was horrible, I hope you find some relief.

[RichGotsPots]

The scarriest for me was when my POTS was at it's worst then I got a staph infection followed by Pneumonia. Thought I was a goner. But every day i feel like a delicate leaf that if you shake me I will crumble :'(