icesktr189

I applied for disabled adult child since my dad is.on ssdi. If approved, I will recieve 1200/month. I applied Janurary of 2011 and now im waiting for my court hearing (second appeal). I am only 22 but have pots friends my age on ssdi or ssi.

The only way I was able to tolerate midodrine was in combination with an SSRI. The SSRI "filled" in the gaps where the crash would normally take place during doses. Its too much of a rollercoaster if my POTS isnt doing well.

My bp almost never goes higher than 110/70 but I have excessive adrenaline (did testing) and tremors, ect. I am always hypotensive but with hyper symptoms.

Also, grapfruit seed extract works wonders! I put a few drops in OJ and it helps with candida, EBV, ect.

LDN would greatly help because it would boost your immune system or regulate it to help fight off the infection... normal people's immune systems fight off EBV, but yours is not. I tried Valtrex once when my EBV was activated and I ended up with some crazy GI problems. I could only stand to take them for two weeks and I dont think they will do much if its not for longer.

It takes awhile for your body to get used to it... it took me a couple months until I had no side effects and just benefit.

Thats because you are using up adrenaline which raises your bp. After the adrenaline is gone, your bp drops and you are worse off .

"A condition by definition is temporary. This is not a disease---it's a condition." It depends on WHY you have this to begin with. Mine is genetic (my mom also have POTS/OI) She has Crohns disease and shortly came down with POTS after. I believe we have autoimmune issues that contributed to our POTS. It depends on what is causing your POTS can be treated or not. Since my mom's body doesnt hold in fluids, she is constantly low on blood volume. She gets hydration everyday, but it never seem to be enough.

I actually just got out of the hospital from excercise lol.... I started having PVCs that escalated to about 5 a min and I completely black out..not sure how long, but I was admitted and they told me in no way shape or form am I to do any type of physical activity until I see Dr. Goodman next month. i started get very severe PVCs after an excercise session. Then after my last session, something just didnt feel right. I was laying on the floor and couldnt catch my breath for the life of me. Then the PVCs started in and I kept loosing conciousness. It was very scary and i really hope it doesnt turn me off to excercise in the future. I dont think I will be able to until I am on the right med combo first to at least stable me out. I am not trying to say this to scare anyone away, but you really should get checked out before you start any type of physical activiity you normally dont do. When I was doing workouts I felt pretty good for a couple hours, probably from increase blood flow, then I would crash HARD the next day. I only did a couple mins on my bike and some light arm ones.... guess I wil just wait for Dr. Goodman

I think I am having PVCs... my heart does that flip/flutter thing. Problem is it has been going on for days. I get one pretty much every 5 to 10 mins. Should I go in or just wait it out? I dont remember having them for this long before.

I just went through this and got approved today for Mayo clnic to see him (My insurance usually does not cover mayo but my cardologst made the referal). I went to set an appt today and they told me Dr. Goodman has no openings for MONTHS They said they would call back if someone cancels.

I had every pots symptom under the sun, and then some the first couple weeks. My doctor actually told me the worse you feel in the beginning, the better the results will be. (very true for me).

My mom, uncle and now my brother (he was just diagnosed) have ulcertive colits. I just wanted to see how common it is with people who have POTS. My mom has POTS, but my uncle and brother do not... but I was thinking there could be an autoimmune component to it.

What you just explained is what I have been feeling like for the past 2 years non stop! Its absolutely terrible. I hope you start feeling better soon

No I am still waiting.. hopefully in the next month... I have been to my mom's appt. with him, so next time she goes, I am going to bring it up. I truley dont think I have depression. I know i have panic disorder, but I only feel depressed when my symptoms are in full swing.

See I should know better by now, but I just cant help myself... I always say that I wont over due it and I always do, so I end up crashing. But I cant have an off day because i still have to take care of my daughter, so I dont ever really get time to recoupe. The physical stuff is very hard, but the mental stuff (feeling down and sad) really takes a toll with me.

What inhitor did you take? Are you still taking it??

http://forums.dinet.org/index.php?/topic/18909-im-pregnant-with-potshelp/page__hl__pregnancy__fromsearch__1

http://forums.dinet.org/index.php?/topic/18605-pregnancy-and-pots/page__hl__pregnancy__fromsearch__1

Oh I mean I dinet... if you go to the top search bar, we just had a member ask the same question a week or two ago... everyone gave their experience I gave birth 2 years after I came down with POTS at 18 ( I gave birth when I was 20) . Pregnancy was okay until the end and I completely crashed at 6 months PP. Havent been the same since.

Its not so much wired, but I am extremely happy that I can go do stuff... I dont have that "top of the world" feeling, but I just feel all around happy because I was able go out or watch a movie without being so dizzy. However, because I am up more, my body requires more adrenaline to funciton. It seems after a couple days or a week that it runs out and I am on empty almost. That is when I start feeling down and tired. Then I repeat this process pretty much every week. Its very frustrating.

I have "periods" where I am able to do more because of excess amounts of adrenaline. I can push myself to go shopping, cooking, ect for a couple days to a week. I feel kind of hyped up and can feel the adrenaline... however, when it leaves, I crash pretty hard. Even though its physical, I also crash mentally. I just feel low. Almost like bipolar disorder, but not that extreme. (I have been checked and I dont have mania to the point of going without sleep or feeling on top of the world, just happier that I can do more). Is it pretty normal when your adrenals are low to feel kind of depressed? I can still force myself to do the bare minimum, but I would just rather sleep. I do notice when I feel like this, I can sometimes sleep it off and if I am able to rest for a couple of days I feel better. The problem is, is that it is affecting my mood pretty bad. I am constantly up and down. Sometimes I just feel this sadness inside, but not not there all the time. I do feel hopeful somedays, but other days, not so much.

If you do a quick search, there are TONS of stuff on pregnancy and POTs

Yes I feel it... they feel heavy and hurt. They also look swollen and redish-purple in color. My stomach looks pregnant from the pooling too.

I have tried dramatically increasing salt/fluids, drinking pedialyte, gaterade, ect and nothing has really compared to saline IVs. I just dont think our bodies can put that much into your blood stream by having fluids go through your stomach. Also I notice that I am still thirsty even after 2 bags of fluids...