DawnA

I hope you have found some reassurance from others posts. POTS is a scarey illness and it often feels like we are dying. Many of us have had anxiety over whether we were dying of something. See another cardiologist! You need another opinion and if everything checks out OK you will have some peace of mind. I hope you find soem answers too. I did not read the post you read and now I am planning not too. I don't want anymore scares. Never be satisfied withone Drs opinion. They are human. Take care of yourself. DawnA

Julie, I am sorry taht you are having such a hard time. I wish I had some advice to give you. You rspinal problems sound very complex. I have not kept up with the post so I do not know what is going on with your disability application. I know that when I was appling I was told that I would get it for POTS and would have to get it on symptoms such as depression. I know others who got it for depression which I was willing to do even though the depression was due to my POTS. Well I ended up getting SSDI for myelopathyor cervical stenosis. Maybe that is a diagnosis you could get it on with all of your spinal issues. If I got it for myelopathy...I do not think you should have much of a problem getting it with some persistance. I was very blessed to get it on the first try.Thinking of you. DawnA

Hi I have a lot of walking issues also. Recently I have been told that I do have a metabolic disease that has affected muscles. But I also feel that low blood pressure affects it too. when my BP is low I walk slow too. It feels as if I am walking through molasses. Florinif did not work for me the first time, but the beta blocker I was using was not working for me. I tried it again a year later and it works but I am on a different betablocker. Are you on a betablocker? Maybe midodrine will help. It is all a matter of trial and error and our bodies do take time to adjust. Good luck to you. I know it is frustrating and I hate being considered a hypochondriac. Remember that what you are experiancing is real !!! DawnA

What a nightmare you had at the ER. I have had them too. As I read your post, tears welled up in my eyes. You must of been so afraid.I know how badly things like this can bring a person down. We are all here to hold you up. I hope you have a great apointment with your PCP. It would be wonderful if he/she did something about it...but it probably will not happen..BIG HUGS DawnA

Topral did not agree with me either. I dont know what it did to my HR, because I was to tired and out of it to even think about taking it. I could not get out of bed. I do much better on Nadolol. At first on Nadodl my HR did run low in the upper 40's , but in time it became more normal. I am sorry to hear that you keep getting worse. I hope you can find the right cocktail so you can start your journey on hiking back up the canyon. Hugs, DawA

Dayna, I do have a great PCP, but I do need a good Neurologist. where is Dr Dotson located? I'll be sure to wave back!!1 DawnA

Nina....only three weeks left of grad school and seven until summer vacation thats great. there is light at the end of the tunnel. Soon you will have more time to concentrate on looking after yourself and taking care of your emotional needs. You have so much drive,their is no doubt in my mind that your positive attidude will come back in time. You have been going through so much lately. Most healthy people could not handle your schedule. You will make it despite the pain of getting there. We all miss you very much!!! Don't feel guilty for not being here right now. We would rather you take care of yourself. Hugs, DawnA

Dayna, I am happy your appointment went so well. I just realized that you are from Milwaukee. I'm from Racine. I am planning on going to the support group too. I look forward to meeting you. DawnA

Dayna, you may find a treatment that works well for you. It takes time. You may be able to function better in the future. Don't give up hope! As far as the friendship thing goes, I am having the same problem so I can relate. It is so hard...someday we will make good friends. That is my hope. Take care, DawnA

Dayna, I was wondering how your appointment went. I hope she treated you well. Dawn A

I am sorry to hear so many are in the POTS hole. I just got out. It has been a year of going down hill and I started accepting that my baseline was really low and I was giving up hope. Three weeks ago I started CoQ 10. It has helped me significantly with my fatique. I was sleeping 18 hrs a day and doing very little when I was awake. Now I hardly need a Nap. Persephone, It makes me sad that you are feeling this right now. I have felt the same feelings and I know how bad it hurts inside. It is hard when you lose your hope! There is hope and you won't always feel this bad. We are here for you. I have been having a hard time keeping up with the site and feel bad that I am not able to respond to many posts. Know that I love and care for everyone of you. Welcome to all the new people. I ahve been in a depression and reading the posts has been very difficult for me. Tearose I will be over for the cookies with sugar. Take care DawnA

All I can say is "I am sad for you" How frustrating, I am sorry things did not work out. DawnA

Merril I will scoot over and make room for you. Iwish you were not here, but misery loves company. I did awful on topral. It put me in bed for three months. You might want to try a different beta blocker. I am on Nadolol and did well on it. I do not know what my problem is now. Take care, Dawn A

Hmmm...sounds like it could be related to POTS. I have trouble totally emptying my bladder. I presently have an infection and I am on my third dose of antibiotics to get rid of it. DawnA

SIGH...what a RELIEF! I am so happy to hear the good news. Big Hugs DawnA

When I am low on fluids I usually get cold and trembly. It could of been hypovolemia. I often get muscle spasms in my legs too. DawnA

Morgen...I am so sorry to hear this new. You and Jake are in my thoughts and prayers. Big Hugs, DawnA

Thanks for the update on Ernie! I am so glad that they are finally taking this seriously and digging deeper to find answers. I too hope she stays there for a while so they get a lot done. Poor thing, how awful it must feel to be completely paralized. She is in my prayers. DawnA

Probably not all due to asthma. I too was diagnosed with asthma when POTS started for me. I do have mild ashma that is aggravated by environmental factors...an emergency inhaler helps with this. I was on advair diskus which did not help the POTS shortness of breath I c/o to the docter. She kept increasing the dose it did not help at all. So I believe most of my SOB is due to the POTS. When my POTS is more controlled, I have less SOB. It definely ahs helped me to stay hydrated and take florinif. Hope this helps. Dawn A

Hi Tea, I am a bit behind on reading posts. I am happy everything turned out OK. Have a good rest. sending warm fuzzies your way. Dawn A

No caffeine, drink tea, propel or gatorate. I would eat your favorate foods that calm you from childhood. My favorite is rice pudding. Think nice happy thoughts. That is all I can think of. Good luck! Dawn Anich

I am so sorry about the death of your mother and all of the details around it. When the core of an apple (your parents dysfunction) is bad, then the rest is often dysfuntional too. That is how my family is. I can't imagine what you are feeling right now, but I know what is like to live in a dysfuntional family. I can only imagine how it is going to feel when my mom dies. I want you to know that my thoughts and prayers are with you. Dawn A

Morgan, I am a little slow these days. I have not been reading many of the posts. I am in the grand canyon along with you and Nina, but have been keeping to myself lately. I am glad that you are reaching out. Your circumstances sound similar to mine. Everything/everyone falling apart around you. I understand how overwhelmed you feel. Hearing about your son and all of his problems brings tears to my eyes. I like what dawn had to say about God not giving us more than we can handle! He definitely allows us to be overwhelmed. I hate it when people use that statement to try and console others. They are downplaying their problems. More thatn we can handle???Well that all depends on what you mean by handling! We are not given a choice. Does handling mean basic survival, staying alive or what? Next person who makes that statement to me is going to get an earfull. I am sorry you are going through this, but is nice to have visitors in the Grand Canyon. I am not the only one who might get rabies. Just remember God does not give us more than we can handle! Praying for you and your family. Big Hugs, Dawn

Co enzyme Q 10 is a good cofactor which aids in energy metabolism...like Michelle said magnesium and b vitamins can help energy too. DawnA

This is great news. Having something to be excited about can be so healing to the body and mind. I hope all of your dreams come true!!! DawnA