dizzygirl

Hi, some of the foods that I avoid (or if I do eat them in very small quanties) potatoes of anykind, pasta, and beef. I find that if i eat these things that I feel really awful. I also have IBS, so I avoid fatty, greasy, heavy foods. and i also avoid drinking pop, or anything with bubbles in, bubbles do a number on my tummy!! But foods that I do eat are salads, bannana puding, cottage cheese, chicken. I find my self craving peanut butter really bad at times... When I am feeling yucky, I will eat some green olives and chug down some gatorade... sometimes does the trick. TO snack on, I'll eat pretzels...or a bannana with PB on it!! I also put alot of salt on my food....

Hello emily!! I read your post tonight, and I can totally relate to what you are saying. I understand what you are going through. Just try to think about the good things in your life, Like Ahser, and and your mom and freinds... and all of us here who are rooting for you too!! Hang in there girl! Linda

that is too funny! thanks for the laugh!!

Hi I was able to book a room at the Hilton for $65 anight, I was told that that was the hospital discount. Good luck!! Oh, i have a question for you all, is the hilton within walking distance over to Dr. Grubb's office? Or do they have a shuttle? Thanks!

Well I put my thinking cap on and came up with... "Crazy"...by Patsy CLine i thought that this fit, considering that at times I feel like I am going "crazy! When i first got sick I thought I was cracking up!!! Nobody knew what was wrong with me, they kept sending me to the Psych ward!!!!!!!!!! and saying that it was all in my head, Gotta love the medical community! LOL Linda

Julie Hi, Thanks for the info! I was on wellbutrin about 2 yrs. ago, and I went off of it, and now I am back on it again, and it does seem to help alittle bit. Dr>Grubb also put me on WEllbutrin. I am coming out to Toledo in August to see Dr. GRubb. Maybe we'll run into each other! you live near MCO right? email me... freedombutterfly97@yahoo.com Linda

Hi, I am so sorry that you didnt get the scholarship that you needed. I know that things have been very rough for you lately, I'm sorry! I hope that things look up for you soon. Here is a big hug for you!!

Hi carmen, i cant think of any potsy songs at the moment, but I thought your post was funny..I cant "run to you" either!!! H*** I am lucky i can walk most days!!

Hi I was on Zoloft about 3 yrs. ago and I gained about 20-25 pounds on it, and it has stuck!!! I wasnt on the Zoloft for more then a few months beofre I went off of it. Now I take Wellbutrin, and I have not yet gained any more weight. I hear that Wellbutrin is suppose to help you loose weight though. I hope it does!!! I hope that you find an anti depressant that works for you. good luck Linda

I am so sorry that you passed out on the stairs. Sorry about your toes too, thats gotta hurt, can you go see your family doc Monday to get your hip checked out? I hope that you are feeling alittle bit better tonight, take it easy over the next few days... hugs Linda

thank you all so much,

hey... i was wondering, the doc's never told me, but how many ounces of fluid should you drink aday? Right now I drink approx. 60 ounces of water and about 64 ounces of gatorade. SHould I be drinking more? or am I right around where I need to be?

Hi Miriam, I will be in Pittsburgh from July 6th thru July 8th, we should get together have lunch or something if you were feeling up to it. It would be great to meet one of you from this forum!! you can email me at freedombutterfly97@yahoo.com Linda

Hi guys.. thanks for the tips.. I will have to try the some of the suggestions. Osme I never thought of, the soup clever. I had 2 episodes today, 1 was a syncope episode, passed right out, and the second time i came very close to passing Out, But I felt that one coming, and layed down on the bathroom floor, until it passed. Boy it is a horrible feeling. I think that the heat has alot to do with my syncope episodes, it is so very hot. Miriam, I live in Erie, I go to Pittsburgh to see my cardiologist, Dr. Bazaz, heard of him? He works through UPMC hospital, he pretty good, very nice doc. I also have a neurologist out of pittsburgh too, I find that the care is better in Pittsburgh, the doctors seem much more knowledgable and understanding tp Pots and dysautonomia. Thanks for the support!!! Linda

Hi I have talked to the doc about getting a standing IV order, and he said to take things one step at atime, and to wait and see if the medication works first.

Hi, well I had a rough day yesterday and today, yesterday I could not get up off the couch, Everytime I stood up I felt like I was going to pass out. I checked my BP and it was 57/44. and it stayed in that range all day long, it went up alittle bit too about 73/56, and my heart rate was running between 130-176. I did not get up off the couch yesterday for fear of passing out. Well today what happened was I slept for a good 14 hours straight, well I woke up and layed there for a few minutes and then I got up, and I stood up and low and behold I passed right out onto the bedroom floor, the only thing that I remeber is my heart started beating really fast, and boom! down I went. It is very scary passing out, I am alone most of the time, its just scary. ONce I came too, I checked my Bp it was about 90/73, thats not to terribly bad, but the heart rate was up some 144. I called my family doc first, because this has been going on since yesterday, and they immediatley said to go to the ER, I did not go to the ER, I have had some bad experiences with ER docs and nurses and do not care to be subjected to there negativity and bone headedness in regard to pots and dysautonomia. So what I then did was page my cardio doc in pittsburgh, he said to lower my dose of clinidine, and lay low, and to call him back tomorrow, So my question to you is what do you do when you BP drops to low? do you ride it out at home? Is there anything that helps raise it? For some weird reason if I eat green olives, they make me not feel so syncope feeling. So what I did was eat alot of green olives, and drank alot of water and gatorade. I didnt know whatelse to do!!! I am feeling alittle better tonight thank god!! thanks for listening! Linda

HI Ernie, i was thinking of you tonight and was wondering how you were holding up. I just wanted to wish you well. and hope that you are ok. Hugs Linda

Hi I just wanted to chime in, I have heat intolerance too, and I spend most of the time indooors where it is cooler, if I do go outisde it is towards the evening, and even then I stay in the shade. If you do have to go out in about in the heat be sure to carry bottles of water with you. Keep well hydrated!. Drink drink drink.. try putting ice cubes in a towel and wrapping it around your neck, or ice packs. good luck

hi i though that I would chime in here too. I have come to have more understanding and patients with my self. I have a better knowledge of how the ANS system works I have even more campassion and empathy for persons who are disabled, no matter what there disability maybe. I have realized that chronic illness can impact you life to the point of debilitation, and I learned to cherish the days or sometimes charish the hours, that i have that I can live life as a "Normal" person. I also cherish all the wonderful people that have come in to my life since I became ill, and for "True friends that have stood by me even during my darkest hour. this was a good idea to list the positive things that have come out of pots! One past good thing... we all have each other on this forum

poorbear.. i am so very sorry about your bad experience at mayo with that cardio. What a horses A**! what i did want to tell you though, I that I believe that oxygen does help a pots patient feel better. I have been put on O2 a few times while haivng an IV done, and I didnt really noitce a difference with the IV, but once they gave me oxygen, I started to feel better, my head felt clearer, and they crazy floaters and visual disturbances went away. I have mentioned this to several people in the meidcal community, and I was told that there is no research that supports oxygen help pots patients. I'm like I am a pots patient and I am telling you that it helps. I was also told by my, dr.'s assistant, that you are so young, you cant be dependent on OXygen. And blah blah blah!!! The medical community frustrates me at tmes!!! ANyways, I am sorry that you had a bad experience! Linda

Ernie, i am so very sorry about the loss of your sister. I know that thia must be hard for you, I wish you well in whatever decision that you make. Sending extra big bear hugs your way! Linda

Hmmm...I was on ambien 10mg at bedtime for almost 2yrs. it worked really well for a while, then i guess I became intolerant to it, and it didnt work work a hill of beans! Lunesta, its a newer drug that has come out isnt it? I have never tried it. But I have insomnia so bad now, I would be willing too! I hope that you find something that will help you sleep soon!

Hi patti, I called Dr. grubbs office back in March I think, and I got an appointment for august 23rd, its a bit of a wait to get in to see him. Hope that you can get in to see him soon Linda

Emily... I love your chicken Idioms, I havent heard them in a while! It made me laugh!!

hi everyone, thank you for your support and suggestions! I hope that i start feeling better soon too!!!!!