kayjay

Waterbaby.. that sounds like some good news... I will continue to pray.. please keep us updated. I am sure that they will be really careful with you knowing your situation ( we at least know they won't want a law suit) BAD JOKE. Anyway- still thinking of you an will put you on my calendar for 10/9! Kay jay

Marni- I wish you well with your fresh start. I know that platitudes can be really annoying esp. when you don't feel well. But you have a lot of people here rooting for you and thinking of you. I hope that helps. Enjoy the time with your parents. It sounds like they really "have your back". My annoying quote about your ex "good riddance to bad rubbish" and just think.. you won't have to deal with those in-laws.. think of how much better holidays can be. Anyway consider yourself hugged and know you are being prayed for during this painful time- Kayjay

Marni, the nadolol is a beta blocker. I know that a lot of docs think that supliments are a waste. I was going to contact the pharmacy about interactions. Do you know why coq10 and Betas are not recommended? Iread that coq10 may lower blood pressure. But blood pressure is a symptom for us not a primary problem. Alicia, do think the coq10 interacted with other meds you were taking? Ana- I was thinking about 100mg every other day to start. ( am thinking that it would be possible to eat that much in you food right? I am going to look up what foods naturally have coq10) Future hope - I am not sure what it is supposed to do. it is recommended for heart heath and maybe parkinsons (and other neurological problems Funny thing is though ssri help me and no one really knows how they work either. i was not depressed- I still am not depressed but my Pots is better on lexapro (after 3 months)

I am thinking about taking coQ10. I know you all may say check with your dr. But my local one might not know much. I was thinking I would call a pharmacy and make sure that there are no interactions with my current meds. Nadolol (beta blocker) Klonopin (barbituate), lexapro (ssri). I am open to any and all opinions as most of you seem to know more then most docs! What do you think?

Jana- I'm falling down...laughing .

Ok. I just took a short nap before my little guys get home from school and I took a bath. I know it sounds crazy but I counted hairs ( I have not brushed) 43 hairs on my pillow, 189 give or take in the tub. I am wondering how many of us with this problem are Hyperadrenic pots people. I major flares this year ( March and April) I wonder if it takes a few months for the stress to make you hair fall out (I mean Chemical not mental stress) Also I think if it is thyroid my eyebrows should be thin on the ends right? Mine seem ok. I treat my hair very gently and I do massage my scalp. YIKES I AM SAD... a vain girl!

kitsakatsa- you made me laugh so hard the dog is looking at me strangely.

My un-edjumakated 2 cents... the H1N1 may be a mist ( good ) and Mayo told me to get the shot b/c fevers are so bad for me. I already got my regular flu shot and I have never had a problem. Every year I don't get the flu shot... I seem to get pneumonia....But I always was teaching and schools really are petri dishes!

I find it a bit troubling that for 5 months I tried and failed to get on the Ndrf website. Of course this one is better but it bothers me that even my dr. mentioned it and I can't get on!!! Dinet needs some more publicity!

Nancy, I feel your pain honey... I have posted on this subject many times. This happened to me when when I had my first bad flare at 25 and again this year. I am 36. I am worried I will be bald. I have fine hair but i used to have lots. Now I have lots... All around the house! Every time i wash it I think i will cry. Anyway for me I think it my bodies reaction to my hyperadeneic POTS flares. A few months after a big flare my hair starts to come out... and out. I have had my thyroid and hormones checked and i have been to the dermatologist. No luck. The only think that I can tell you is that last time this happened to me it stopped after about 6 months... I hope it will stop this time. Right now I am putting tea tree and jojoba oil on my scalp, bushing my hair when it is dry, taking a suppliment, and praying. Oh and cleaning hair up everyware- Why did we get a dog that doesn't shed? If it makes you feel any better my 11 year old told me this morning that she knows my hair is falling out but "you can't really tell mommy". I think it looks worse to us than to anyone else. If you learn anything please write back to me b/c I would love help with this too. Kayjay

Emma, I just wanted to say hello. I hope you take some comfort in knowing that a lot of people here have an understanding of your suffering. I will be praying for you and asking for answers and better health for you going forward. Have some hope that you will do better. I know for myself I may never be "cured" but I am learning how to handle this disorder better. There are things that can help you. I have learned a lot on this forum and am glad you found it as well! KayJay

I am one who cannot imagine working at this point. I was a teacher and I have been slowly sorting though my things and giving them away. I have an M.Ed in exceptional children and I taught special ed and early childhood. Moving around, bending over, jumping all was a part of doing my job well. I am certified to teach k-12 but I have too much brain fog to even think about teaching older children- I tend to speak and spell like a preschooler! I think the work thing must depend on what kind of job... is there something I can do laying in bed that requires no thinking? I am worse now but drug reactions caused flares for me. Also I think my body just has gotten worn out. I went for ten years undiagnosed and had 2 children to care for. I pushed and pushed and just kept going. I wonder if i would be in better shape now if I hadn't had such poor medical care for so long. Also I was 25 when I got sick, now I am 36 I think with age it can be harder to bounce back in general. I feel like I am 90. Anyway sorry that I rambled on.. I am so sad to not be teaching because I was a very good teacher.... I don't know what else I could do? Right now my big goal every day is to help my children with their homework and to prepare a healthy dinner for them. I am thankful when I can do that. Short story long I cycle and get worse over all.

I AM SO GLAD THAT YOU POSTED THIS INFO!!!. Before I knew what was wrong with me, I took a drug from this group last fall and had my first trip to the er. My BP bottomed out and I was in shock. I had hives for 3 weeks. I feel like you solved a mystery for me b/c i though that I had an anaphlaxis (SPELL) reaction. Thanks for sharing MAXINE Oh but I dont have EDS just POTS although 6 years ago I tested positive for some kind of connective tissue problem.

I think Thankful has a great point. I also was told to drink salty things in the AM and to try to get most of my fluid earlier in the day. Really for me in a few weeks I noticed that I was peeing less and my rings are staying on my fingers!

When you drink a lot... you pee a lot... but when I was at mayo i learned that I was drinking far too much water (over a gallon a day). I was told that 50% of what I drink should be sodium rich (v8, broth, g2 etc.) This has helped me retain the fluid I drink. I used to get up about 6 times a night to pee. Now I only get up once and sometimes NOT AT ALL ! Maybe if you change what you drink it will help. Also coffee and green tea make me have to "go" more. Someone told me that these drinks stimulate your bladder! Good luck! Kayjay

Thankful... So glad you are feeling better !

Jana.... Please keep us posted. I will be keeping both you and your mother in my prayers. I am sorry that you are facing all of this at once. I am putting your name on my calendar for Monday as well as October 6th and I will be praying for you. One day at a time ..right? Kari

I hope you are doing better... this guilt thing can be hard. I remember dragging myself to my daughter's band concert and I thought I was going to die! I try to think of all of the good things that I do.... I LOVE my children. I LISTEN to them. My children are also less judgemental and they are learning to care for themselves. I still "manage" our household- even if I am not doing much of the labor. I hope that you are feeling better and just remember how important you are just because!

This may be "old news" to everyone else.... but it really helps me to drink a BIG can of V8 (with a straw) as soon as I wake up and then I stay in bed for 20 min or so. This has really helped me with the graying out I used to deal with on the way to the potty. I also bought a tray cart with wheels for my laundry room. I really never have to bend over. Also (and I know this is costly) our dishwasher is the pits. In October I plan to replace it with a drawer dishwasher. My children can use the bottom drawer and I will use the top ( I am pretty sure hubby will use neither !)

Thankful, I think if you have a fever it most likely is the flu. I had a vicious case of food poisoning... no fever. You really may want to call you Dr. H1N1 can cause the symptoms you describe. Hope you are better soon and please keep us posted. Prayerfully Kari

From the time I sought medical help until my diagnosis... just over 10 years.

Shell, My bp tends to be much higher then yours but it has been 80/42 and I felt ok ....maybe b/c my pulse was also low 50. Anyway For me I think the feeling crappy has to do with the changes more then the #. I don't take my bp every day (maybe I should b/c it can give you good info) but I cannot always connect how I feel with the readings. I know I don't feel good when my heart beats fast... but again i think I feel the Blood pressure changes (maybe why high blood pressure is called " the silent killer" because people with chonically high blood pressure don't feel it?). Also my mom's hr and bp are very low (now health problems) but she doesn't feel sleepy like I do. Just my thoughts.... I don't really know what I am talking about . Kay

Erik- Your numbers do not look to strange to me... Maybe because my own numbers are strange. I have hyperadergenic pots. Also my numbers really vary day to day and moment to moment. My dr told me to pay more attention to how I feel. really I think what feels the worst are the large swings I have with my bottom number (often a 30-40pt swing). My resting pulse varies as well from in the 40's to in the 120's. I am better on a beta blocker but still have big swings.. I notice these when I have a headache. Yesterday I felt pretty good and I realized that I had eaten I high salt/ low carb all day. Also If I drink too much tea I get tachy. If you have hyperadernic POTS I think it might be nomal to not have a "normal" if you know what I mean. Also around here allergies are awful. If you have allergies the hystamine your body produces can really effect you bp and hr. I know rinsing my sinuses (ask me about this if you want) really helps my overall health and POTS symptoms. My children 9 and 11 have been rinsing this fall... I can tell when my son skips b/c he sounds like he has a cold. I hope you are doing better soon!

hello all, I am going to try birth control pills to help with my POTS and my endometriosis. I know I can't have YAZ because it keeps you from retaining water. I also know that it needs to be monophasic. I have hyperadrenergic pots. Do any of you have suggestions of something that helped you? Thanks

Hi Daisy, I just wanted to let you know that my bp is all over the map as well. It has been 84/42 or 112/50 recently but it does not stay that low. When I talked my Dr. about the "feeling crappy" part she said that the swings can make you feel poorly. There is a tendency to feel tired when you bp is so low but she did not think it was dangerous. She was more worried about it getting high (which is does) and not comming down when I lie down. My top number will also stay above or around 100 but my bottom number will swing down 30 -40 points very quickly. It makes you feel like dirt and I would talk to your dr about it if you are on any meds. I ended up cutting my beta blocker in half to not make it worse , but you should be pretty safe. high blood pressure is worse for your body. I also notice that my resting heart rate is sometimes in the 50's then it is in the 120's but my blood pressure is ok. If you feel "in danger" for more then a few hours I would definitly call you dr. I was told to go to the er only if things did nto settle down with rest- hope you feel better soon. I know all of this stuff stinks! Kay jay