Er Trip With Vertigo And Pots

[tpots]

Hi all,

I've only posted a couple of times and though I poured over this site when first diagnosed with POTS last Spring, I haven't been on as much lately as I tried for awhile to forget all about POTS. I've always wanted to "introduce" myself, but never really took the time, so often felt that perhaps I should wait and not post until I had. Well, that will probably never happen, so I'm just going to jump right in and start commenting.

I had a strange weekend. I have often had dizziness and spinning when sitting or standing and occasionally a small bit when lying down, but this weekend was very different and unnerving. I really wanted to die!!

Saturday morning I got up and went to the bathroom. I immediately knew something wasn't right, so went back to lie down. I seemed to be very dizzy upon lying down (the lights weren't on yet). I decided I could sleep a little longer and get up when my husband did. When he turned on the lights and I rolled over, the whole room began to spin and the lights went side to side. I tried to focus on the light and get it to stop, but it just kept going. I tried to close my eyes but I felt like I was spinning and about to fall. I sat up and immediately broke into a cold sweat and got nauseous. I thought I would vomit, but only kept burping like I would (nothing sour). Since I wasn't vomiting, I laid back down and then felt like I was falling head first and backwards. This whole scenario was repeated several times since I also had my normal morning routine of diarrhea. I realized that every time I moved my head (while lying down), it would start the spinning and free falling all over again, so I stopped moving my head until my body would ache from being in the same position or I had to get up to use bathroom. At one point, my back ached so bad I had to move and the free falling started up so badly and continued for nearly three hours. I literally prayed to die!! Finally that subsided and I had the worst headache ever. I was trying to figure out what was wrong ~ going through all the possibilities ~ stomach virus, migraine, stroke, etc., but didn't think it was any of those, so I just stayed in bed with ice packs all over.

The next morning, my head felt better and I was able to stand without any spinning. I felt weak and the mere thought of what had happened threatened to make me nauseous, but I did feel well enough to go to church. While driving to church, the movement began to make me feel a little dizzy. By the time I got there, I was feeling very weak and very dizzy. I slunk down in my seat and sat like that through the services. After waiting for most everyone to leave so as not to have to encounter too much motion, I slowly walked out with my friend. When we got outside, I knew I was going down. Again, the dizziness and the free falling started coming on, though not as bad as the day before. They got my husband, who was rounding up children at the time, and he tried to get me to the van. Eventually, an ambulance was called and I was taken to the ER.

In the ambulance my bp was 160 over something. I normally have very low bp and take midodrine throughout the day to raise it to normal. I was trying to think coherently (this was difficult) and tell them not to lie me down due to midodrine. I also managed to tell them that 160 was extremely high for me, but probably coming from the med. Then I realized I was past due for my next Midodrine dosage so it shouldn't be high at all, but don't think I was able to relay that. My husband was filling in quite a bit, and told them I had POTS. He was drawing a blank on all my allergies, though, and gave my age a year older(I'm going to keep a list of allergies in my purse now due to this)!! After that, all I could think about was trying to tell them I was not that old!! :-) At the hospital, they discovered my potassium was very low. They gave me sodium chloride and potassium. They took a CAT scan just to make sure it wasn't stroke, aneurysm, etc. They also called my neurologist, thankfully. They performed what they called an "orthostatic test" ~ basically like the Tilt Table Test, but just took bp while lying down and then made me stand. I didn't do too well ~ I passed out within minutes with the TTT last Spring, so I'm not surprised. They ended up giving me meds. for dizziness and nausea, but weren't going to let me go home until they did another orthostatic test. The ER doctor was afraid of stroke and said they had a very good case to keep me. I knew I needed to get home, and when I realized what they were doing, I just kept moving my foot up and down and leaning back toward the table with the 2nd Orthostatic test. My heart rate went way up, but my bp didn't go down as much, so they let me go home with a promise from my husband that he would bring me back if I got any worse. The discharge papers stated 'vertigo' and 'POTS'.

Today I have felt very weak, but much better ~ no dizziness with meds.

Have any of you been through this and if so, how have you coped? I can't stand the thought of having to go through that "free falling" ever again!! Also, if I had been at home, we never would have gone to the hospital ~ I had actually been so much worse the day before that I'm sure they would not have released me. How do you decide when to go to the hospital, or how do you let people know that you can go home and not to call an ambulance when you have an episode like this in public? Truthfully, I don't know how they were going to get me into my vehicle or how my dh would have gotten me up to our room. Also, I did feel so much better once they gave me meds for the dizziness and nausea, so I guess it was good that I went and I am thankful for my friends that insisted.

[lumpchp]

Hi there, so sorry you went through all that. Unfortunately, it sounds familiar though. You mentioned midrodrine, are you taking any type of corticosteroid? I had a similar experience when I was put on florinef, but for me, the headache came first, then the spinning, cant move my head part. I know it also drains potassium too. I don't know much about midrodrine though, I wonder if pots alone can affect potassium levels...I always have nausea meds on hand just in case, because I tend to get that feeling allot, almost reminds me of my younger "drank too much" years when you get the spins.

Don't feel bad for jumping in, I'm pretty new to all this, and the people here have been such a blessing, I don't think anyone will mind :-)

As far as being in public, I have had several episodes, and I usually just ask for some water, it tends to give them something to do untill you can get the point across that this is"normal" for you.

Good luck, keep posting, there is nothing but support here :-)

[chipper]

Hi tpots,

So sorry you have gone through this misery. Yes, I have had this kind of verdigo many times through the years. Having to not turn my head and lay in one position for many hours. Drinking a lot and getting rest, but trying to move enough to keep up some strength helps to keep this vertigo under control. I stay away from the ER, because they would make me sicker. Medication has made me very sick in the past. For me, waiting it out has been the best medicine. Your are not along. I care, Mary

[corina]

Hi tpots, welcome back!

I have this vertigo thing every once in a while. it usually stays for about 3 days where all I can do is stay in bed and wait it out. Lifting my head and turning in bed makes me feel awful. Nobody knows where it comes from and what to do about it but fortunately it goes away by itself.

[MomtoGiuliana]

I have also experienced these symptoms and also felt very badly only to find out my potassium is low also. For me there always seems to be a correlation to low potassium when my POTS is severe. One thing that helps me is keeping fluids going, and a little salt (my dr cautioned against too much salt b/c this can upset the potassium balance he says). I also recently keep on hand coconut water. It is rich in potassium. On days I feel poorly I will drink a liter of it. It is expensive but it makes me feel a bit better generally. (Coconut water was used in the South Pacific as IV saline to rehydrate injured soldiers in WWII!).

I hope you can talk to your dr about your medication regime and that you feel a lot better soon.

[jpjd59]

I am so sorry to hear that you are experiencing this.

My daughter's very first symptom was waking up with extreme vertigo. Finally diagnosed with POTS a few months later. Since the initial bout of vertigo, she gets motion sickness any time when riding in a car (she never had any kind of motion sickness before).

Pam