Unanswered questions

[nicole]

I am at my wits end. If any of you have any advise or answers for me I would love it. It is so hard to understand what is going on with my body. It has taken the doctors almost 15 years to finally give me a name for my symptoms. Now I have a name and still no answers. I started on proamatine yesterday now up to 7.5mg 3x's I feel good for about 1 1/2 hours then my pressure and heart rate drops (ex: 92/64 62pulse or just now it was 102/60 with a 50) this lasts for about 15 to 30 minutes then I feel good again til the next dose. It was the weirdest feeling I felt out of breath. So I did what I always do, I went in my yard and starting walking and this brought my pulse up to 65. I called the doctor on call and he told me 50 was not dangerous. I want answers from these doctors

and they give the bare minimum.

I have this major fear of dying since all this started. I am home alone after I drive my child to school which of course makes me have all kinds of weird thoughts and feeling. I would feel better if the doctors would let me know whats up. If you have diabetes they are able to tell you when you are in distress.

[justin]

i can relate to that fear. very much so.

particularly before i had any inkling of what was going on, i would get it daily. there was even a short time when it was constant (like every waking minute).

i had this terror hanging over me. i felt like any minute something really, really bad was going to happen, namely, that my heart would stop or something like that. there were times that i was convinced that i wouldn't live through the night. it was absolutely the most terrifying thing i have ever experienced, and was not alleviated by friends or family holding my hand and telling me it was going to be ok. pure panic. total adrenaline. like being on really bad drugs, and not being able to come down, only a thousand times worse.

i have been there. and i'm not there anymore. i still get this feeling, but it's not constant, and it's not even every day, and i can deal better when it comes.

i hope it passes for you very soon....

[Goblin]

I too can relate to this. I used to be in constant panic. I would freak out any time I was alone, and I did not do too much better when there were any other people there. I too used to think that I would not make it through the night. I have not gotten enough information from my doctor to take away my fear. Sometimes I get the feeling that I just can't go on any longer. When I feel like this, I just think that I have had every test possible that could determine if there was anything life threatening wrong with me and they all came up negative. I think that I have had this feeling before, and I know that it will pass. My mom tells me to do something that distracts me, but we all know that is easier said than done. All I can tell you is that fear only makes your symptoms worse. Try to relax as much as you can. Good luck to you -Stacey

[hilfgirl33]

I had this fear, too, before I finally started seeing a doctor who knew about POTS. He assured me that POTS isn't associated with death, just with a poor quality of life. I still feel that way sometimes, especially as now I'm having problems with my bowels and pelvic pain that is so bad I might consider undergoing a surgical procedure and that does scare the heck out of me. But I try not to think about it and have confidence that my doctor knows what he is doing.

If I'm feeling really weird and scared, I just tell myself - this isn't going to kill you, do what you have to do to relieve your symptoms now (which is usually laying down, salt and water or taking one of my anti-anxiety meds. Chamomile tea often calms me, too and I've heard about valerian being a safe and natural anti-anxiety med, but I'm too scared to take it - LOL!!'

If anyone uses this with success, please let me know.

Good luck.

Elaine

[ethansmom]

I think this panicky feeling is something we can all relate to at one time or another. When I first got sick, and right after I was diagnosed, I was always home alone because I couldn't work, and my boyfriend worked extra hours to help pay the bills- so I spent hours and hours every day by myself in misery. It was terrifying, and I would panic a lot because I was also certain I would just die. I remember one day I was so dizzy I thought I was literally dying, and I had a near panic attack, I had to have my boyfriend leave work on emergency to come home and help me calm down.

I now realize that these fears are irrational, and that of course we are not going to die of POTS, but sometimes it's hard to shake the anxiety that comes along with this condition. I have become much better at relaxing myself, and have found that if I stay calm when my symptoms are acting up, they don't get as bad. And distraction is really the key, when you are feeling up to it, you can try to become involved with as many things as possible to keep your mind occupied. I take web classes, sell on e-bay, and of course I have an infant to care for, so I am quite distracted most of the time!!

Just a thought about the Pro-Amatine as well- have you talked to your doctor about taking a lower dose more frequently? I used to take 5 mg every 3 hours, which helped a lot more than say 7.5 mg every 5 hours. That way there is a more level amount in your system at all times. It can take months to come up with the right dosage and combination of meds before you start to feel btter, but don't give up!! I hope you feel better soon!!

[nicole]

Thank you all for your feed back, its does help to hear from others going thru it . When I start feeling bad I am gonna come back and read these. Thank you so much Nicole

[Debbie Rose]

Hi Nicole,

 With my NCS (cousin to POTS) my heart rate can go down to the 40's and 50's at rest and it did scare me in the beginning. I went thru all the cardiac workups before my diagnosis and my heart is fine. But it can be scarey. If I go from standing directly to lying down my heart slows so fast I have a pause in my heart beat to the count of 3 and feel like I will pass out, then it just beats slowly (I don't do that fast lying anymore-haha)

Just thought this would help

Debbie