Dizziness, Lightheadness, Disoriantation

[carinara]

Hello everybody!

Iam off work at the moment because of our upcoming italy holiday in the next days! Last year we had to cancel our holiday because of a bad POTS Episode and this year i promised my daughter to take her there, no matter what. I hope it all turns out ok. Therefore i wanted to slowly get the packing done today. All this bending down and turning around (even though i did all this chores sitting in a chair) made me (much more than usual) really dizzy, kind of disorientated, lightheaded and 'seasick'. Normally i try to avoid this tasks, but today i had (and still have) to do them. All this symptoms are things i deal with every day. But when the symptoms get much more intense than usual to a degree that i feel extreme disorientated and out of balance, dizzy and so on, i get anxious with it because even though ( i hope) its not going to kill me, it sure does feel life threating to me. I had them spells so many times before in the past but somehow they still scare me. All i can do is lay down and wait. Thats usual the point when i start feeling nervous with it because it feels like 'my lights are going off' any second and thats when i dont know if i should ring somebody just in case? Before i got diagnosed one year ago, i had no clue what was happening to me for years. Now after i know so much more about POTS it does help a lot, but still when i get very symptomatic i lay down with the phone next to me and instead of just letting go, i watch myself and try to figure out if and when i have to call somebody before i faint? Die? Something else happens? I only called somebody once or twice in the past.Then i feel that i can more let go and relax because i know that somebody looks after my 11 year old daughter and if something happens to me somebody is around to help and do something like calling the doctor if iam not able to or whatever?!?! Like i said, i do get them symptoms on a daily bases and i do have to lay down every so often. Iam not talking about them normal daily symptoms. I'm talking about them symptoms that make you feel really spaced out, it feels as if all the blood is going out of your brain, you ears ring and your vision is really blurred.I would really be interested in how you handle it when you get extremely lightheaded, dizzy and disorientated and you are alone at home and cant get up? How do you stay calm? Is there a sign when you have to call an ambulance? (its probably a silly question but thats whats running through my mind in them sort of situations)

Thanks a lot

carinara

[dezyrae2]

I wish i had an answer for you but i don't because i feel exactly the same way. Just this past week i felt like this every day. I felt like i was going to die. It is really scary and i also have kids. They are 12 and 14 and i just worry that i wont be around for them. I hate to tell them that but when i feel like this i just dont know. I also keep the phone with me where ever i go. just in case. I hope you start feeling better soon and i hope you have a good trip. I guess we just have to hang in there and hope it all passes. Best wishes.

[Ernie]

Hi,

I lie down when I get too dizzy and when I faint I never call the ambulance. I pick myself up and wait it up. There is no point in going to the ER because most of the time I get bad treatment.

The only time I go to the ER is when someone freaks out and call the ambulance. I hate it because I am stuck there for hours and have no treatment. Sometimes they will give me the favor of giving me an IV saline.

I am used to living with my symptoms and I don't panic.

[yogini]

I'm used to it now and just wait it out, but for years I always kept the phone with me at all times. I always called a friend or family member. Sometimes I didn't even tell them I didn't feel well - just talked about something random and it was nice to have someone there. Other times I said I'm not feeling well, do you mind staying on the line with me for a bit? It helps to have someone to talk you through or who can call the doctor or ambulance for you in a pinch, if needed. And remember, POTS is not life threatening. Enjoy Italy. I'm going there next week too!

[Guest tearose]

I wish you a wonderful trip carinara.

As for what I do when I am very symptomatic, well, after so many years of managing through behavior modifications I just use all my skills to get back in balance fast. I drink salt water or electrolyte mix, lay down and focus on breathing through a spell. I use compression so I may have to use a stronger pair of hose if my symptoms are worse. I would suggest you too consider some techniques to help yourself.

Figure out what your symptoms are and where these are coming from. If is it pain and in your chest, is it from your ribs? a fast heart rate? an abnormal run of beats? You can learn to differentiate between these various sensations and that will help you manage.

You can use a bp cuff and a heart rate monitor to start to learn what 40 beats per minute feels like as compared to 140 bpm. You will see what to avoid and what helps. If ever you feel you are not able to manage then do go to the doctor. I think any heartrate that is too high for too long is dangerous. Hope this helps a little.

Pack your compression for your trip and walk around on the plane!!!

Caio

tearose