JodieArizona

Hello everyone,

New to me this year is a seasick feeling. I call it "seasick" because I don't know how else to describe it. Usually, it occurs at the end of a day when I have particularly abused my body: dancing at a wedding, walking around all day long at a zoo. Sometimes, it hits me the next day. I'll be walking and suddenly I lose balance, hit walls and feel as if I cannot walk straight. One time I tried to sit up in bed and I just could not do it. I swayed badly every time I started to. Also, the other day, while sitting, I rolled my eyes at something and I felt horrible. My head felt like it was swaying, my balance was off and the room looked like it shook. It only lasted a second. Anyone have any of this stuff?

Thanks,

Bri

Hi Bri,

Yes, I have the same "seasick" experiences that you have described a major portion of my day every day. When I describe what I am feeling to people who ask, I also use the term "seasick".

Jodie

Hi Everyone,

I was in good health until last February and I contracted Mono during what was a very very stressful 2 years of my life. I had a hysterectomy at the same time after going the ER in an ambulance with strange symptoms that did not add up to Mono to the doctors. The doctors did not believe me when I told them how ill I was feeling and did the hysterectomy anyway due to very large and dangerous uterine fibroids. It took them 5 weeks 2 hospitals and 8 doctors to finally diganose me with Mono. I have been ill since February and finally diagnosed with Dysautonomia 2 weeks ago. Having the major stress of a viral illness and a previous 2 years of terrible stresses in my life...here I am a testimony that stress can trigger a terrible illness.

My belief and trust in God has provided quality of life for me even through all of the suffering!

Best Wishes To All!

Jodie ~

11 years how can it possibly be 11 years??? Another year of this stupid illness has passed by and inside I am just screaming inside...11 years when is this going to go away. It is so hard to realize what my life once was and what it is now. I soo want to go and be and do. But my husband said a really great thing he said that you know it is not a bad life...we are together, we are still in love and you have friends and family that love and support you. It is not what we envisioned but it is ok for now. Just watch out when you do get well huh? And that is sooo true. It just has been a kind-of rough patch lately, my energy has not been good and the headaches have been bad, the tachycardia has gotten worse new things crop up... so it is hard to be strong and keep hope. But then I have ok days and I realize I can do some things and I am learning new things ...(naii cize.n...like learning Hindi.. long story lol.) I guess I just needed to say hey my fellow POTsies, if you could send me a little extra strength and love it will help me get through. And tomorrow I will begin the fight again!

Hi Everyone,

I was just diagnosed with Dysautonomia 2 weeks ago after a bout with Mono in February, 2006 and a hysterectomy at the same time, due to doctors misdiagnosis. You can imagine what I am feeling after educating myself on this illness, since my endocrinologist offered no information she just said "You have Dysautonomia, there is nothing you can do about it...I'll see you in three months". My blood pressure does not drop when I stand, so I don't think that I have POTS. I just feel so very dizzy, nauseated and fatigued all the time now...no breaks like I used to have. Sometimes it is so bad that I feel like I am just going to die right then and there. I don't want to sound wimpy, but I am new at this. Does anyone have any information that would be helpful?

Thank you ~ Jodie

Hi Everyone,

I have been very ill since February 1, 2006 and have finally found out last week that I have Dysautonomia after a bout with Mono. My doctor said "You have Dysautonomia...there is nothing that you can do about it...I'll see you in three months". I have left a message today at her office for her to call me back, since I have read online that there are different types of Dysautonomia and I would like to find out which one I have. I have read that a viral illness such a Mono can trigger Dysautonomia. I do not have a drop in blood pressure when I stand. I just have severe fatigue, nausea, dizziness, adrenaline to high, throid up and down and blood pressue too high sometimes 150/100.

If anyone has any info that they think would help....please let me know.

Thank you~

Jodie