lalalisa

Shanna, Welcome! I am 25 and have POTS too. What are your biggest struggles right now? The first few months were the hardest for me after diagnosis. I had a really hard time going from working full time to being forced to rest constantly. (I slept 15 out of 24 hours today) Welcome to the site!! Lisa

I also take a Beta-blocker along with the Midodrine. Midodrine is definitely the one medication I would choose to stay on if I had to choose. (It helps my blood pressure and dizziness so much!) Hope this helps, Lisa

Thanks everyone! I am experiencing more stress than normal - which also includes less sleep. Since this seems to be the major change for me I'm thinking this is probably the culprit. If this continues I will definitely see a Dr. It's always so encouraging to know that I'm not alone in this! Lisa

Hello again to everyone! I deal with mild dizziness quite often - it feels kinda like sea-sickness... ....but recently I've been having violent dizzy spells that last a few minutes and then go away. They are pretty scary because I have to lie down Anyone else experience this? Lisa

Gwem, Hello! Welcome! I am 24 and have had POTS for 1 and 1/2 years. I can do small things like go to the grocery store. Other than that I rest at home and sleep lots. It is difficult feeling like I'm 90 when I'm only in my 20's. Plus, I look so normal and healthy - which is a blessing but hard too. I went from being home-bound without meds to being able to do small things out of the house for short periods of time - with meds. (proamatine, toprol xl, paxil cr) I hope you will improve quickly, Lisa

I tried Provigil and it made me feel kinda "antsy", someone else said like a few shots of espresso - this is how I felt. I didn't like the feeling so I stopped taking it. I think it's GREAT that it's helping some of you guys! Lisa

My case began after an intense virus (mono/EBV). I began the diagnosis process after passing out while standing one day. Hope this helps, Lisa

I've also had a similar experience recently. The body aches were so bad that I couldn't move and I had a hard time sleeping....I was literally in the most pain I've ever been in! I hope you improve -- It's hard to tell sometimes if we are "sick" or if it's part of the other sickness...POTS. Hang in here, Lisa

Roy, I am also a fan of Singulair and also Flonase/or/Nasonex. I also did fine with Zyrtec or even Benadryll -- But just take these at night! Hope this helps! Lisa

Jackie, It sounds like you've been through a lot lately! I actually experienced really extreme constant anxiety and a few panic attacks for a while. My Dr. put me on Paxil CR which has been great! I don't tolerate meds well but the slow release helps so much for me! I am so sorry that you have been through so much! I hope that you find a Dr. who understands! Hang in here! Lisa p.s. CAN SOMEONE PLEASE TELL ME HOW TO FIND THE ARTICLE THAT WAS PREVIOUSLY MENTIONED ABOUT THE MENTAL/PHYSICAL RELATIONSHIP WITH POTS???

1. Lisa 2. 24 3. Chronic EBV (mono) and POTS 4. 23 5. Louisville, KY 6. Symptoms at worst: Extreme fatigue, Panic attacks, Tachycardia, Weakness, Blackouts (passing out), Poor concentration/memory, dizziness, sweating, visual disturbances. 7. Symptoms at best: Fatigue and mild tachycardia 8. Medications/treatments, etc. that didn't work for you: Florinef, Provigil 9. Medications/treatments, etc., that do work for you: Proamatine, Paxil CR, Toprol XL, Benadryl (for sleep), Singulair, and most of all Lots of sleep!

Brain Fog..... Seems to follow me wherever I go these days. My Dr. described it to me as the "fog" you often experience when you get a cold or flu....which is often what I feel like. Just not thinking clearly, concentration is hard, also I often struggle with remembering things. Can you relate? Hang in here! Lisa

Thanks everyone, this annoying feeling goes away after a good nap. (I guess putting your feet up is the key) Any other tips? I'll have to try some support stockings also. Lisa

I am having a hard time describing the symptom, but my legs actually feel extra full of blood and they throb. Does this sounds familiar to anyone?? Is this what they call bloodpooling? It definitely happens when I'm up walking around. Just wondering, Lisa

Dear ethansmom, Wow, it sounds like you are going through a miserable time! For me, the key was getting the anxiety under control. This first step allowed me to at least make it through the day. For me, Paxil CR in the lowest dose (12.5 mg) was a life saver. It really calmed me down and allowed me to think logically and actually go to my medical appointments and the grocery store (without panicking). I hope you improve quickly! Lisa

For me it was mono (epstein barr virus). I was a healthy college student who was running 3-5 miles a day....I got mono and then POTS and now I'm basically homebound. It's interesting to me how many causes there seem to be, Lisa

Jackie, Hi! Welcome, it sounds like you are going through a lot right now. I also dealt with intense anxiety at the beginning of my POTS onset. I had a couple of panic attacks and just felt really irritated and edgy alot. I would keep in mind that many of us are extra sensitive to meds right now and you may just need a very small dose.... for example, I take a half of the lowest dose (25mg) of toprol xl....it's great because of the slow release (beta blocker). Also, I take the lowest dose of Paxil CR (which is also slow release which is good because you don't get a huge surge of medicine at once) It is 12.5 mg. This has helped my anxiety TREMENDOUSLY! I wasn't able to even go into public settings until I started on this and now I'm not anxious at all! Hang in here and I hope this helps, Lisa

Roelse, I just wanted to write and say thanks for your post - I also have the same concerns as far as pregnancy. I can't imagine losing a baby through miscarriage, it must be really painful. My husband and I also would love to have children but are unsure as to what it would do to me or the baby. Can you take any of the POTS meds while pregnant? Have a good week, Lisa

Everyone has such interesting stories! It's amazing what we've all been through. My POTS started shortly after an intense mono infection which I still have - it is now Chronic and has lasted close to 2 years. I am unable to work and I'm almost homebound....I am able to run a few errands here and there. I went from running 3-5 miles/day to limiting myself to one small activity per day such as a quick grocery store trip. It's tough being 24 and feeling 94! Thanks for all of your responses! Please keep them coming! Lisa

I am just wondering how long most of you have been dealing with POTS??? Also, what was the cause of the onset?....I am wondering if the theory is true that a viral onset can mean a shorter timespan with POTS. Just wondering... Thanks again! Lisa

I also have trouble with breathing! Especially singing...I was a vocal performance major and now I can barely make it through a hymn in church!! Interesting what similar symptoms we have! Lisa

YES! The other day I walked into an office building, took the elevator, then walked into an office and almost fell on the ground while talking with the receptionist! I stay dizzy for quite a while after an elevator ride!! That's so interesting! Lisa

I take Toprol XL in the morning....it's great! Also, I actually take a half of a 12.5 mg pill so I guess that's around 6 mg's. (my heartrate was around 40 beats per minute with a full tablet.) Hang in here! Lisa

It is also really hard for me to get up in the mornings!! ...are most of you unable to work? (I am unable) I was surprised about how tired you guys are, interesting! Thanks for your input!!!!! Lisa

You all are a wealth of info! Thanks!! If anyone else has anything to add please feel free! Are you guys of Midodrine or anything similar? How was it going off of your meds? Ling, I was very interested in your response since you are in the process of getting ready for pregnancy. I was wondering if you would be interested in expounding on this process? What type of things does your dr. suggest? Why a Caesarian section and also no epidurals? I guess the caesarian makes since because I've often wondered if I would pass out during labor!!! Thanks for any input! Oh, also, why did your dr. suggest to have kids ASAP? By the way, were the rest of you worried about passing out during labor? What steps did you take to get ready for pregnancy? Were most of you on bed rest during your pregnancies? Thanks again to everyone, this has been so helpful! Lisa