taylortotmom

I love you so much Melissa. I hold you in my prayers. Carmen

When I had my port, my cardio set me up with a home health nurse to teach my husband and I how to insert the needle and do dressing changes. An infusion company sent the supplies weekly. I received 2-4 liters a day when I had my port. And yes, it is prescription only Carmen

I have a pacer becaue I have tachy/brady syndrome in addition to my dysautonomia (which isn't POTS). POTS folks generally are advised against ablation and pacers. In my case, the pacemaker has helped tremendously with my mornings- I don't get up feeling like I have been hit by a truck. But, as stated it helps with my brady not my tachy. Carmen

Yep, the kids go back to school Thursday and I am so ready to get back into the groove. It's not good for any of us (in our family) to sleep so late Carmen

Melissa, I am so sorry- I send you much love. Carmen

I had a hearing and was approved within ten minutes of seeing the judge (after being turned down previously). Going in person can often work to your advantage- especially if you are young and have an attorney. Good luck! Carmen

A speculation is women seek medical care more often than men and thus, are diagnosed more often. Pregnancies, menstral irregularities, hormonal issues recquire medical management therefore, as a generalization women are more in tune with their bodies and seek medical care more often than men. Those same "hormonal issues" can trigger autonomoic dysfunction so this is another possible reason why women are diagnosed more frequently with POTS. However, in my case my dysautonomia isn't POTS and is more common in men so as always there are variations to every norm. Carmen

If I have had a bad or tiring day- alcohol can cause more problems. But, if physically I've had an okay day one drink is usually fine. The key being one weak drink- anymore is bad for me. Carmen

Defnintely. Going from a little cool outside to a heated inside is torture. I don't even think we have turned our heater on yet- even when it has been COLD out. Carmen

I have funky "visions" too. I attribute mine to migraine auras which for me are almost always the result of irregular heartrate. Carmen

It certainly can- I have had it happen pretty frequently. I have now learned how to control it somewhat better (for me, taking my beta blocker the second I start feeling tachy- this is with my doctor's recommendation)and trying to calm down the best I can. But here lately it can happen with minimal external stress and it is so frustrating! Carmen

Welcom home, Mellissa. Enjoy being back in your own bed. Carmen

Ernie, I think most of us can relate to the pain of mourning our former lives. My "anniversary" is in August and it is a really strange and painful time for me. There are no words I can give you- this is a time when hugs speak louder than words- so if I were with you I would hug you. I'm sorry. It stinks- there is just no way to sugercoat it. Carmen

You know you have dysautonomia when you go to get your debit card out of your wallet and a stack of med info cards and two salt packets fall out instead. True story- happened this morinng! Carmen

Gosh, that sounds painful!! I have no idea why it would be splitting verticallyy, but our nail condition can be related to our health and nutrition. I say this because a neurologist told me once that he could tell I was not eating well because of the spots on my nails (white spots). I believe it is a sign of iron deficicancy but I am not positive. Weak and brittle nails are often a sign of vitamin deficiency so you might need to get some bloodwork done to see what you are not eating enough. Good luck! Carmen

Welcome to the forum. Based on your readings, you very well could have a type of dysautonomia. Some folks do have an increase in BP upon standing. Have you had a tilt table test? This is the standard test for measuring pulse and blood pressure while lying and standing. Carmen

I'm the prototype for the MVPS girl- tall and scrawny. I'm 5'10 and my normal weight is 135 however, thanks to my recent bout with e coli I am way, way down (my pants are falling off!). My doctor is not going to be happy with my weight loss so I'm trying to gain some before I see him! Carmen

Not in your area but kudos to you for taking a stand. We need even more advocates like you! Carmen

I think the guy did you a favor by allowing you to see his true colors. Congratulations on losing him- sounds like you came out ahead. Carmen

Melissa, So sorry to hear about this latest setback. Hang in there girl, we are all pulling for you. Carmen

Welcome back. Peace and love to you. Carmen

When I feel terrible- condensed soup can help. Popcorn is a staple for me as is tortilla chips- extra salty, and salty nuts. Essentially, bar foods- ha ha. Carmen

Hi, Nina- so glad you had a nice birthday even if you paid for it today. Wilbur is just about cute- I have enjoyed the pictures so much. Can't wait to see more! Carmen

Congratulations! Thanks for sharing with us! Carmen

Yay, Persephone!!!!!!!!!!! Don't forget us little people!! I am so incredibly proud of and for you- way to go. You have become an inspirtation. Carmen