Is It Typical To Feel This Bad?

[Nikki]

I was diagnosed with POTS in October of 2009. Since then, I probably had 2 full weeks (spread out - usually it was a few good days here and there) where I felt good enough to go out and do something. My main symptom is dizziness. It's pretty much constant every single day..I just feel so spacey and like I'm on a boat. I do try to get up and move around when I'm feeling a bit better, but when I'm so so dizzy, it's hard for me to just get from room to room let alone push myself to do more...I spend a lot of the day laying down, and even when I'm doing that I still feel like I'm on a boat. Of course it's a lot better than when I'm walking, but it never goes completely away. I'm just wondering if anyone else is/was this bad? If so, did it ever go away? I heard some people are worse their first year or so after being diagnosed..then it might get better. It's just so frustrating when I feel horrible for almost a constant 5 months now and I have no idea what to do.

Right now I'm only taking a beta blocker (Pindolol) - which has slowed my heart down to a normal rate. I've only tried that and Florinef so far. The Florinef seemed to make my BP spike too much..I am going to see the cardiologist who diagnosed me at the beginning of May, but I was just looking for some input on here to see if anyone is, or ever was, in the same position I'm in now.

[lieze]

Yeah I felt very dizzy but have snapped out of it for the most part or we could say that it comes and goes that would be safe. I feel no dizziness today but it's scary when it takes over. It feels at the time that it will never improve but it does and has.

I think mine might be associated with migraine-no pain.

If I take a Xanax which is a recommended treatment for vertigo migraine mine improves. I just don't want to take that much Xanax so I try to live with a lot of the symptoms even though it depresses me. Also ibuprofen seems to help much of my symtpoms but I don't want to wear a hole in my stomach so I don't take that everyday either.

Also I never felt myself until about a year after I had a baby. I right after felt weak to get up and walk could have been the anemia. I also would get flashed that went through my head that I was going to die. weird. And I would imagine my arms giving out and dropping the baby. This occurred over and over that first several months especially after my first baby.

My mom and my husband would do a lot of the walking the baby and burping, I didn't feel I had the strength to do it. But that did improve within a years times.

Then just one day I would be usually walking into work and it would hit me that I was back to normal. And I would feel that little skip in my step. Part of mine like I said could have been the anemia?

[Nikki]

Thanks for the reply. I do get migraines as well, so I'm thinking it might just be a combo..I used to be able to handle the vestibular migraines by themselves, but the POTS on top of it has just really slowed my life down.

[miranda]

Hi , Yes I am the same , I have been diagnosed with MAV

migraine associated vertigo. Its tough but does improve over time.

Beta blockers are a preventative medication for mav , another pill I am on which has really helped

me with the dizziness is "Amitriptyline" I only take 10mg at night cos it can lower blood pressure.

without it I can not function at all.

Another thing you can try is the Migraine diet , it can help some people but it didnt help me.

good luck

[miranda]

forgot to add , there is some info online about MAV causing dysautonomia

http://www.dizziness-and-balance.com/disor...rthostatic.html

[Noreen]

That is a great website. Thanks for posting

forgot to add , there is some info online about MAV causing dysautonomia

http://www.dizziness-and-balance.com/disor...rthostatic.html

[lmt033167]

Yes it's typical for me, some days are better, others I have no clue what aggravates me worsening. I feel like I started as a rock rolling down a hill picking up stuff going down the hill and now I'm this huge boulder of stuff

Meds haven't helped so far with my symptoms, so I gave up on them for now - have to wait till June for my insurance to go back.

[mountain girl]

Unfortunately, I think it is typical to feel bad. The whole first year I had pots I felt bad everyday, but somehow pushed myself to keep working because I did not want us to risk losing our house or not being able to pay our bills. On the days I did work, I would go out to my vehicle on my lunch break and lay down for my half hour. If it was hot out, I ran the a/c. Laying down for that little bit of time helped me get thru the day. On a more encouraging note, I do not have to lay down on my break anymore. Sometimes I do, but not every day. But when I get home, I have to rest. Thank goodness our children are adults so I don't have the same responsibilities some of you have. Also, the first year or so I never had any energy to do anything much other than work, and home to bed. This second year, I have actually been able to fix supper some evenings, where as before it was all I could do to fix a frozen dinner or make a sandwich after working. Sometimes I cannot even hardly explain how I feel bad, I just know I do and that I need to lay down. I also notice if I work or overdo now I am exhausted like a hangover the next day even. Now I also have some days where I feel almost normal for the better part of the day, but I want that everyday.I know everyone reacts differently to the pots, but hopefully you will feel better as time goes on.