kayjay

When I went for my TTT the staff was talking about my earlobe creases. It may be related to a connective tissue problems. Anyway they called the endo and had extra blood work done which was fine.

bjt22, I have had ringing in my ears and some hearing loss but it has never been total and it has always gone away. I think you are wise to treat this seriously... but it might just go along with the POTS stuff. I think many of us have horrible weird symptoms. I have had vision problems to the point I really was worried I was going blind- Lasts for days but of course thank GOD my eyes are healthy. Good luck but please keeps us posted. I will be thinking about it and praying for you until you write again. Good luck

Marni... Just wanted to let you know that I'm sorry that you are dealing with all of this. I hope that you can try to take care of yourself and not have this added stress make you sicker. Best wishes and I will be praying for you- kayJay

Dale, My husband, my mother, and my dog have all had lyme. This could be very good news for your because you could be completely cured. Lyme can cause all of your problems and more. My husband even dealt with paralysis. Anyway I know that all three of them (Hubby, Mom, and dog) took Doxycycline for 4 weeks. You have to take it that long for Lyme. I urge you to get this antibiotic asap. In week you might even feel healthy... but after you take it for 4 weeks you should get rechecked in a few months to make sure the infection is totally cleared. Good luck but don't delay you need to star on this med as soon as you can.

Thanks Nina... I will try to see if I can do that. I just can't "see" my own mistakes anymore.

Is there a way to spell check my posts? I get stressed when I see some of my own misspellings. I have such bad brain fog I can't see my own mistakes and then I see them later (YIKES)- Thank you KayJay

Bella- OOps to the above. I don't notice a time of day really, and I am not on hormones although YAZ birth control pill set off my latest severe POTS episode. I took it for irregular bleeding and within 2 weeks was in the hospital... but I am almost glad b/c I got bad enough to get diagnosed. I think my BP is lower in the AM and higher as the day goes on. The trouble is I have children (9 and 10) who are a little fearful b/c this past spring it seemd like I was going to "kick the bucket" (WEIRD expression). Anyway I try to never take my BP when they are around me and... they are always around me. I think I am lower in the Am because that is when I am most likely to "grey out". I did have a ttt and I know that my heart rate got crazy high but they never told me what my BP does. I am sorta wondering how low is too low because I am always stop the beta blocker-

I don't know if this is of interest... but I struggle with Low blood sugar. Does that mean your insulin is high or low?

Hi- reading your posts. My BP has been as low as 86/44. Is this crazy low? I did feel poorly but I feel worse when my BP is 150/106. I think my is all over the place. I was put on a bb b/c my resting hr was 150+ but now I am cutting the pills in half because my bp has been sooo low I can't begin to function on a full dose. thanks for any info- KayJay

Nathiz- Yes, yes and yes. I think we do have weird symptoms b/c Pots really is a neurological problem. The swallowing problems are very scary but I am much better on beta blockers and a ssri. IT took some time but i now longer have trouble with this. One thing to think about the meds ( I used to never take anything) they can prevent damage to your body and organs. The bb protect your heart. They are not just a "short term help" they can help preven damage long term. Doctors think that ssri can help "reset" your system. I have to say that after 4 months I am starting to have periods of time in the day when I feel almost normal. I used to feel like I was going to die every day. My resting heart rate was often 150. good luck

Cat Lady, I also have struggled with my weight because of the beta blockers, inability to exercise and I think our bodies burn more calories when our hearts are beating too fast. I have a few suggestions that may help you. Although gatorade makes me feel better... it is full of sugar. I am drinking water with sea salt in it instead. ( I can't tolerate nutra sweet but I am going to check online for a sports drink that is low cal- if I find one I'll write you). Try to eat protein and cut out simple carbs. This has helped me retain some muscle even though I am not able to exercise right now. I also ALWAYS drink a full glass of water before meals and I used to take a fiber suppliment before meals ( try metamucil if you can tolerate it). It is hard b/c I have always been thin, active and I have always been able to eat what I want. I think you are really wise to try to "nip this in the bud" b/c I have friend who have gotten so over weight that they feel helpless. I try to think of not gaining weight instead of trying to lose weight and it takes some of the mental pressure off. I also try not to have things in my house that I like to eat (I love gummy worms) because I will eat them. so I don't buy them. I have been known to thow sweets out also. A neighbor made us a beautiful cake. My children and I each had a piece and then I tossed it ( after writing a nice note and telling my children that they could never tell anyone b/c it would hurt her feelings). Sometimes I will chew gum when I am bored and that keeps me from snacking. I am also trying to give myself a break if I pig out b/c I tend to be an all or nothing person and that is not helpful when you are trying to watch your weight. I know it is wasteful to thow food out but I once heard someone say "would you rather thow it in the trash can or treat your body like a trash can?" This helps me not feel guilty because I know I have too much and others dpn't have enough. Anyway I wish you well with this struggle. I know it is hard but you can do it and you will feel happier ( or less crappy depending on the day LOL) . Kay Jay

Hey Guys... I just wanted to add my 2 cents about the heart thing and POTS. Pots can wear out your heart. It can become enlarged (like and over-worked muscle). POTS maybe a problem in your brain but the side effects can wear out other organs. I have had untreated POTS for almost 11 years (at least). Hopkins was convinced that I had a Pheocromcytoma tumor that was just to small to see. I was just diagnosed in May... so my point is you can damage your heart, kidneys, brain when you are running around with untreated blood pressure problems. I am 36 and have "only" Dysautonomia problems but many people on this site have other helath issues and/or are older. Just my thoughts.

Firewatcher, Thanks for the info. I do have bladder issues (frequency) but I don't notice the pain related to that. Maybe it is my kidneys. I thought it was my adrenal glands because of the surges that i get. Thanks Ana I wonder if your back pain is the same.... Would you call it flank pain? Mine is worse on the right side and tends to go along with feeling queasy. Thanks

How wonderful for you. I will be praying that all goes well for you and your family. What an exciting time. I also have a boy and a girl (although they are 9 and almost 11) and I have to tell you that you will have so much fun!! Best wishes- Karry

Thank you for sharing your news. I hope things just keep getting better and better! I am praying for a complete recovery!!!

Do any of you get pain in your back in your adrenal/kidney area? I have this often. Nothing shows up on scans. The pain is worse after I have and episode. Today I made the mistake of going to the supermarket. Thankfully I was with my mother and children or I would still be sitting on the floor in front of the deli counter!!! To whoever answered this post for me before thank you and forgive me for looking for others that feel this way.

I am sad that you are facing this horrible trouble. How scary! I think all of us as mothers wish we could take on our children's suffering for them. I am praying for you and your son. I am praying for healing, peace and comfort. May you and your family feel the love that God has for you. May you have the health and strength to take care of all you need to. May your son be home healing soon. With love in Christ Jesus- KayJay

I wanted to answer one of your questions. My husband only loves me for who I am. Not what I do or what I contribute to our household. I do not have a job but I spend "our" money. I can't even make the bed by myself most days and I have very bad allergies so it is a bad idea for me to clean. now that my husband knows that I have POTS he is compassionate. And asks me to help with what I can. I have a stool on wheels in my bathroom and the kitchen. He basically cooks and I season everything. I load the dishwasher on my knees. I pick things up with my feet if I can and and I have a rolling cart on wheels in my laundry room. I have learned that bending over makes me really sick so I try to avoid that. My husband is not perfect (nor am I) but we are a team. Right now I am the weaker one and I can "do less" but our value is not what we "do". It is who we are! You can offer love, support and friendship. I struggle sometimes b/c I am not able to teach and I was a great teacher. I started to get some of my self worth from that job and the praise I got from doing my job well. POTS has reminded me that I have intrinsic value as a human being. Have you heard of Joni Ericson Tada? She is unable to use her arms and legs and she got married after her accident. I reccommend her book. Anyway I hope I don't sound preachy to you ... I mean to help you.... POTS is just one struggle we face in our marriage. You want to make sure that you are with a man who will take what comes... richer poorer sickness health. Good and bad times are ahead for each of us. We are raising children together and have dealt with many problems and losses. Find someone who will "have your back" no matter what. Someday your parntner may face something awful - loss or illness and you will have much love and compassion to offer because of your own suffering. One final word is a quote from my older brother. He is a man of few words and does not speak gently. He once told me "You don't hold on to garbage just because it's all you've got". I don't mean to say that your patner is garbage so i hope I did not offend you. I only mean that sometimes we cling to things we should not because it is all we have... even if it is not good for us. Please don't be offended by my thoughts. Only you know what is best for you. I just want to remind you that you are valuable and you should expect kindness and respect. Best wishes PS there is a book called "How To Cheat at Cleaning" I do some of these things and I also will buy wipes and paper plates more!

I think it is really important to remember that you did not ask for this illness and you did nothing to "get it". It is not "fair that you are not healthy." I have been married for 12 years and have been sick for almost the whole time. My husband really struggled sometimes with thinking that I was lazy until I got diagnosed. Can you get your boyfriend to read about POTS on this website? It is a really weird illness and hard to understand. Most likely he does not understand. Find other people in your life (family maybe) who are willing to help you. It may not always be healthy to be dependent on one person. I ask my mom to help me with chores that I struggle with. I help her out doing things that I can sit and do. We also pay a woman to come in once a week to help me out with cleaning... I know it is an expense but when my husband gets home from work he does not want to do chores ( I am too POTSY to work). One other thing to think about in a relationship is to not settle. When you are sick you may forget that you deserve respect and kindness. Also you see the best in you partner BEFORE you get married. My husband and I never even argued before we married. Make sure that you are treating yourself with respect and not settling for less then you deserve. Life is hard with and without POTS and being with the right person can make it eaiser but the wrong person makes life harder... just my two cents... good luch and I hope you are feeling well. You need to take care of your-self because you are more important then a clean bathroom! Best wishes

I Tell people that I have Dysautonomia. It makes more sense I think and there is some other medical condition that is called pots. Also for me I feel like Pots is just naming one symptom. I have many symptoms.

Mayo wants me off my meds for testing. I don't take the lexapro for depression. My dr. thought that it would help "reset" my system. It has not. I am really only worried about cutting back on the bb. It only helps me a little right now. I am going to go to my local dr. on friday and see what she advises about the bb. Maybe I can cut back at home and stop it whe nI get to mayo. Also I have ativan to take as needed but maybe something else would be better.

Thank you all for your advice and help. I have started going off of the lexapro. I'll take 5mg less every week until I am off. For the bb I am going to meet with my local cadio and see about cutting the dose in half but not stopping it until I get there. I am greatful for your input!!

I really don't notice a difference. I had a hot dog last night and felt no worse then usual.

I want to get a seat to take with me in case I get caught standing. I have just been sitting on dirty store floors. Any reccommendations?