dizzy

Congratulations and Happy Birthday!!! Best Wishes - I hope all goes well for your new family - you must be very excited!

I have 3 siblings and my mother had 2 miscarriages. My POTS comes from my father and his father however. I have 1 child - fairly normal pregnancy except for severe nausea and vomiting for nearly nine months. Also, the dizziness got really bad the last month. I would love to have another one but not sure that I have the strength to care for another one. I can barely take care of myself some days. I would love to give her a sibling because I worry that if she has POTS as severe as I do - I don't want her to be alone - I would like to know that she would have a sibling to fall back on. But, on the other hand I could pass on POTS to both of them. We can make ourselves crazy worrying about all the uncertainties of this terrible condition. I wish I knew the right answer because I'm getting older every day.

I voted no change, however I have been underweight most all of my life.

vanderbilt would be an option also - nashville

I am very sensitive to motion also. The worst part of air travel for me is take off/landing and turns. when the plane makes a sharp turn I get extremely dizzy. I put my head back against the seat and do controlled breathing also. It passes after the the plane gets level and straight again ( back to my normal dizzy - lol). Good Luck

Ernie, I am so glad that you got some answers and some validation. It sounds like you had a wonderful time in Niagra Falls - you deserve a good day out! I would love to see the falls someday too. I think i have asked this question before, but brain fog is hiding the answer from me. How do you get tested for adrenalin and norepineprine levels? Is it a blood or urine test? After the Isuprel test I was told I had overly sensetive beta receptors - but beta blocker didn't seem to help me. They have never tested my adrenalin or norepi levels - I would like to have that done. What should I ask for? Thanks, Susan

Try a lay over somewhere. Fly 2 hours - take a lay over where you can eat stretch your legs or put them up - then fly the other 2 hours.

Potsparent can you please tell more about plasma renin activity? I have low blood volume and was given both a beta blocker and florinef at different times. I was put on a very high dose of florinef and told I would gain weight by retaining water and just the opposite happened to me - I lost 20 lbs and felt the worst of my life! This is the first time I have heard this. I haven't been able to figure out why florinef didn't work for me. Should I have my kidneys checked out? or adrenal glands? Florinef was definitely a poison for me. Any more info you can give would be greatly appreciated. Thanks, Susan

count me in too! Little desire, no energy, numbness on one side, shortness of breath. Those of you on SSRI - this is a direct side effect of the antidepressants. I don't take those but still have these problems. Autonomic related, chronic illness related, or hormonal related it just isn't what is used to be....lol.

Thanks! Keep us posted.

If you don't mind - how much does it cost?

Please keep us posted. I find this interesting because I have high folate levels on blood test. I wonder if the folate is not getting into the brain to work and therefore I have high levels in my blood ??? who knows? I noticed a few weeks ago someone else posted they had high folate levels also. Dizziness and brain fog are my worst symptoms. Thanks for the info, Susan

Welcome Corina, Your english is just fine - better than mine on most days. I have such a dizzy, foggy head that I have trouble thinking and I can't remember how to spell even simple words at times. There are a lot of friendly, supportive people on this discussion board and I have learned much from them. Best Wishes, Susan

Hi Danelle, I don't like trying new meds either. When I start something new I usually have someone stay with me for the first few days in case I would have a reaction. I will start when my husband is off work or I will go stay with my parents or other relative when he is not home. I understand your fear. It helps just to know that someone is with you just in case you have a reaction or unwanted side effect. Best wishes, Susan

Yes, when I first wake up in the mornings my hands are red and swollen goes away in about an hour. Also, when it is hot and I have been standing my feet and hands turn red and hot.

You All made my day today after reading this! I can relate to all that has been said. I have more trouble sitting than I do standing where I can move around and get some blood moving. The "fetal position" - that just cracked me up! I always have my legs tucked up under me or near my chest whenever possible. When standing I usually have one leg bent and my foot propped against my other knee - my friends at work used to say I looked like a flamingo - standing on one leg. Little did I know there was a real medical reason why I was always standing that way! I have a really hard time at church. I usually sit for awhile and then take my 4 year old out to the nursery where I can walk, sit, lay whatever I need to do. Reclining chairs would be some preachers worst nightmare - alot of people fall asleep during the sermon already .

I just wanted to add a warning about weaning. My pots symptoms were at their very worst after I stopped breastfeeding. Dr Grubb told me that when breastfeeding we produce oxytocin which is a vasconstictor. When you stop producing oxytocin you lose the vasoconstictor activity. I know we can't breastfeed forever, but just wanted to warn you that you may get an increase in symptoms when you stop. We are all different however. Best wishes, Susan

Congratulations! I hope all goes well for you and the baby! You have received a great blessing and joy into your life. Susan

Thanks Sue and Nina! Everyone here is so great to share information to help others !!! Hope you feel better soon too ! Susan

Thanks Merrill and Nina - Yes I wondering what drug Sue is talking about - Focal. I searched and couldn't find anything about it. I could really use something to help me focus - if that it what it is used for. Thanks!

what is Focal ? Thanks!

I was wondering if anyone has tried GABA (gamma amino butyric acid) as a replacement for benzodiazepenes (lorazepam, clonazepam). Does anyone know if GABA can be measured by a blood test? I have read that low GABA levels in the brain leads to a hyper stimulated state and anxiety. Would an EEG show overstimulation in the brain? Do POTS patients have low GABA? Or is it more likely to be high adrenaline. I am interested in getting my levels of neurotransmitters checked - who would be best to interpret those results - a neurologist or endocrinologist? Thanks for any help! Susan

There are also several ep cardiologist at Mid Ohio Cardiology at Riverside hospital in Columbus.

I hate to post here - but yes I have had this recently too. I do not have other GI problems, but my burping is driving my husband crazy! I don't know if it is POTS related. I can't help it - it comes out. I don't even drink pop or carbonated beverages.

Dear EarthMother, I hope you feel better soon. I enjoy reading your post very much. Your post are always full of inspiration for everyone. I love the emergency POTS test - that made my day. Please know that even on your bad day you still lift up our spirits. Thinking of you and wishing you better days ahead!