pobarjenkins

I have had POTS for five years. I have gotten a flu shot every year with no negative effects. 

Thank you everyone for replying! It means so much to me! I do think I did a terrible job of describing everything. It's so hard to explain and it's almost like you have to feel it to understand. It's so nice to hear from people who deal with all of this too.

7 hours ago, StayAtHomeMom said:

I am curious did you have an epidural when you had your child?

I did have an epidural that seemed to go well. The POTS issues showed up about three months later and the tilt table confirmed.

7 hours ago, lieze said:

I'm so sorry that happens to you. The most I can relate to it is sometimes I have what seems like momentary loss of extremities or a severe onset of nausea where I feel like I am going to vomit and nothing is going to hold it back but I don't end up getting sick.

As far as the momentary loss of use of extremity I have broken a lot of glasses where I go to fill it from my water cooler and I'm standing there and the next thing I know the glass is falling and shattering all over the ground. I guess I lose my grip or something. I have not understood why this happens.

I have fallen a couple times and it's like something just gives out in my hip or something and down I go. I don't flail or anything like that it does not last that long. 

There have been times during an episode or right after I do not feel like I can get up at all. Like no strength, no coordination and especially if I am out somewhere public one of my biggest panics is how am I going to get out of here and out to my car and heaven forbid drive home. I feel like I just cannot get up and walk however if I take my time and gather myself together and give my self a 10-15 minute rest after I can usually walk out with no issue. It's just very scary to lose control and then believe that you suddenly have it back again or to believe through the episode that you have any control that whole time based on how it feels. 

I do go down yes. That is why I could not work. I was collapsing on the job and I do not even know how much of it was voluntary or involuntary. It just happened but I could always get up and walk unless I was in the middle of an episode and then no and again for a while after. I remember any time a squad came to retrieve me I would say I cannot get up and they would assist me and also my speech becoming slurred on many occasions due to an episode which that seemed scary. 

I also on several occasions if I have tried to stand in line at a check out or something similar I will be standing there and all of a sudden I will get this sensation that everything below my waist is just going to give out. And by that it feels like I am going to lose control of bowel and bladder and also that my legs will just go weak and I will fall. To date that specific situation has only been a feeling. A couple times too getting ready to go to the store or an outing I will get ready be walking to the door and my lower half will just feel so weak and I get the idea that my legs are going to give out on me and just not hold me up. But I am able to walk and have just taken my chances and I have not fallen at those times. 

The worst part for me is just the way it feels when you are not in control of your body. I get the flooding of emotions too and tears with mine and for me it's a combo of I just lost control and the sadness that this is my life and then the creepy feeling of what it feels like for your body to go haywire. It just plain feels bad similar to how getting sick or the flu makes you feel bad at the time. The weird thing is I usually forget just how bad it feels say in a day or two those thoughts leave me and I go back to doing what I can do.
Nothing really surprises me with POTS honestly. I have all types of body malfunctions that are not logical so when they happen to me I try to tell myself now this will most likely pass or oh there goes my wonky body again. I think the degree of these episodes impacts our reactions though and as severe as these episodes are for you I can understand your concern and frustration?

I hope you get some answers. 

With it being your lower body and loss of using it did you have any type of spinal during delivery. I wonder if it could be related or I wonder if it could be some type of nerve damage related to vaginal birth that you lose your lower quarters. 



 

Oh my goodness, you explained a lot of what I experience. Thank you so much.

And I did have an epidural that seemed to go well. The POTS issues showed up about three months later and the tilt table confirmed.

8 hours ago, bombsh3ll said:

Hi pobarjenkins and welcome!

Regarding my own experience with POTS, I have lived with severe POTS for a little over 4 years (I have Ehler's Danlos Syndrome but lived a full and active life before POTS & was only diagnosed with it after POTS) In terms of my main POTS symptoms (listed in order of most to least significant) mine are: severe orthostatic intolerance due to presyncope/syncope, constant lightheadedness, headache and chest pain. The latter two are variably present and relieved to a degree by painkillers and benzodiazepines, the first two constant and relieved only by lying down. I get nausea often (in association with feeling presyncopal) and vomit occasionally. 

I have never experienced any double vision, eye rolling or loss of control of any body part whilst conscious, nor had any witnessed seizure like activity. 

It is possible you have another condition either in addition to or perhaps misdiagnosed as POTS - examples could be an atypical form of migraines or seizures - and it would be best to consult a neurologist for further investigation. 

Most things dysautonomia aren't really treatable, but you may just have something for which there is a good treatment that could significantly improve your quality of life, and getting a diagnosis would at least give you some peace of mind.

B x

I have epilepsy as well, but it's been well treated for years. The symptoms aren't like seizures at all, though I definitely made it sound that way! A cardiologist was present when I had one of the episodes and told me she had seen similar issues. It's just nice to hear experiences that are directly from the people who deal with it all!

9 hours ago, Pistol said:

I pass out and take seizures from POTS but I have not ever experienced anything like you describe but I know of other members on this forum that have similar spells. This sounds like something you should bring to the attention of a neurologist. Have you seen one? 

I do have epilepsy, but it's been well treated for years prior to any symptoms. Definitely not seizures, although I 100% made it sound like it! I had a cardiologist confirm, and I have my neurologist as well.

I've had POTS for a little over five years now. A few months after I had my first child, it started. I blacked out the second I stood up. I was lucky that it happened while I was in the hospital for something else. I was on bedrest for a week, had the tilt table test, was diagnosed and then treated with medication. 

A few months later, the episodes changed. When I have one, I completely lose the ability to walk or remain upright (even crawling is impossible). It isn't always dizziness that does it either (though I still deal with that and the other common symptoms). I just lose control and my legs flail around.

Basically the worst episodes start with double vision where my eyes roll upward repeatedly, losing control of my lower limbs, then intense vomiting. Sometimes I only experience the inability to remain upright however.

I'm on a different medication now, but every now and then I still have these episodes. I've seen so many posts about dizziness causing these issues (and it definitely has for me as well), but nothing about it happening at times when there isn't obvious dizziness.

I don't know how else to describe it. It's like my legs aren't attached to my body and they flail around if I move them. It's a horrible feeling. It's not just weakness, it's absence. At times when my husband has had to support my entire weight while I walk, I have cried because of how it feels.

I was wondering if anyone has experienced episodes like this too. Episodes where it's just losing control of your body. I'm sorry if this doesn't make much sense, as it's something that's so hard to describe, yet so awful to experience. I guess I just want to know if there is someone who has felt this too.