DSM3KIDZ

I had an awesome appointment today even though I'm still sicker than ever. My G.I. doc says that since all my nausea is not being relieved by the motilitity agents, actually it doesn't matter if I take it them or not. I feel the same either way. He thinks my nausea is due to the lack of blood getting to my heart and brain and there for going haywire and making me feel like crap. He really was thinking out of the box since he's a motility doc. He wants me to have a exam of my heart. Where they but a cathiter to check it or something like that. He also said since my situation is so complex and I'm not responding to the normal treatment I'm a good candidate for Mayo. My Neuro also suggested this at my last appointment also . I guess I can do med trial there or something. He also gave me a script for compression hose and if I find relief from that then he'll prescribe a vasoconstrictor. I think he mentioned proamitame (something like that) and also prescribed nortriptyline for migrianes and said it might help with the nausea also. I pray some of this helps since I've been homebound for the past 3wks. If I do anything I feel totally wiped out and need to sleep almost the whole day. That's not usual for me. I have endured this illness for 2 yrs and was never as fatigued as I have been for the last 3 wks. I pray I overcome it. I'm not enjoying or caring about my life because I'm too tired and only care about sleeping right now. Has anyone just had a bad spell of fatigue to find it get better? I'm scared it's turning into CFS. I think I fear CFS more than anything else because I want to be at least conversational with my kids and right now I slurring and dosing off every 10 minutes. Well I just wanted to give everyone an update. My GI is awesome and very compassionate and I think I finally found my go to Doc!!!! Super sleepy Dayna

I'm just looking for your opinions. I see a neurologist who specializes in Autonomic Neuropathy but was looking at the physician's list on the home page and an Electrophysiologist named Dr. Cooley was listed. Since I'm not getting any better.............actually worse I wonder if I should see what he has to say. Maybe he has a treatment my neurologist doesn't have. My neurologist is awesome and works directly with Mayo clinic so she's very knowledgeable. Is it worth going through my whole history with someone else? My insurance covers dr. Cooley that's why I'm considering it. Can an Electrophysiologist do anything different than a neurologist? Dayna

Well I had two tests. The first one was with the eggs. The tasted fine. I layed under the machine just like Morgan posted. The second one was longer and I had to eat beef stew with liver in it. YUCK!!! and it was timed so I had to quickly get it down. It was so gross. who eats stew with liver at 8:00 am. Anyways for that test I stood for a few minutes and they would take a picture. Than every 10 minutes I'd have to stand again. But overall the test was easy and non invasive. Good luck I hope you get some answers Dayna

I'm so glad you are in your own bed. I hope things look up soon! Dayna

Did anyone have vertigo from a cold and have it resolve over a couple of weeks? I'm nervous about this because I feel debilitated by it so I'm sure all of you can understand my fears. It's a constant feeling of off balance. Dayna

Thanks for everyone's responses. I became dizzy after my last cold 3 wks ago so I'm hoping it will just resolve itself like my doctor stated. She didn't tell me which ear is got vertigo or anything. Everyone is freaking me out but she really did express this is just temporary and I have to believe that at least for now since I've never had problems like this before. If it doesn't resolve then I'll investigate furthur. Thanks I'll look at the exercises dayna

Claire what is an ENT? Dayna

My primary doc wants me to see a urologist because everytime I do a urine specimen or urinalysis they see blood. I guess it's enough for them to be concerned about. I'm nervous because I can't handle anymore dx. I never saw blood in my urine so it's only visible under the scope. My doctor said we better check it out to rule out anything major. She specifically said "with you, I'm sure it's something major". How insulting. I hate her but don't have the energy to find anyone new right now. I have been healthy for 27yr and now she makes me sound like a hypochondria, which I'm not. I actually never see her. I avoid her if at all possible. Anyways anyone else have blood in their urine? Dayna

My dizziness was getting worse. It was mostly when I changed positions and turned my head..stuff like that. My neuro said my orthostatics were fine so I thought it might be my ears. They didn't do any tests but based on my symptoms she said benign positional vertigo. Since it didn't happen only while standing we knew this was something besides the normal Potsy dizzies. It's actually worse while sitting. She said it should resolve in about 3 weeks. I'll keep my fingers crossed. Anyone else have this? I was prescribed meclizine 25mg 3x a day. Dayna

Good luck on your date tonight. Please give us an update dayna

My allergiest said because of my autonomic problems he highly recommends me to stay away from the allergy shots. I'm not sure why I just trust his advise. Hope someone else has better answers for you. Dayna

I was only able to search on it for a few minutes becuase my computer keeps locking up. Anyways I thought i'd pass it along. Dayna www.butyoudontlooksick.com

Thanks for all your responses. I think if I use good judgement I should be okay. I have never fainted so this might just be some motion sickness I'm experiencing. I just got a script for it to see if it helps. I pray for it's just temporary. Hang in there everyone Dayna

I don't mean to sound like an idiot but by rehab do you mean a work out program? dayna

Jaime sorry to hear that. I can imagine you would get in trouble if you were caught driving. Thank God for Husbands!!!!!!!!!!! Dayna

Belinda it definitely sounds like an annoying symptom. Do you have allergies? It was nice talking to you the other day. Thank you for your support. Hang in there and I hope you get some relief soon! Dayna

I right now will only drive with my husband. I ask the doctor for some motion sickness meds to try to see if it helps because I feel more sx when I'm moving in the car. I'm continuing to drive to make sure if it is an anxiety thing that it don't get too out of hand. Thanks dayna

I've been having these dizzy spells while driving. I don't know if it's POTS or anxiety. There's no reason for me to have anxiety while driving so I don't think that's it. Anyways I was wondering how many of you can no longer drive and how do you get things accomplished? I have to take the kids to their event, friend etc. and can't imagine not having the freedom to drive. I am still driving -only if needed but I'm hoping this will pass as another weird sx that came and went. Dayna

I'm all to familiar with the unrelenting nausea. I have tried everything reglan, domperidone, zofran, phenergan and nothing seems to last for that long. I had the best success on Domperidone but it must have already adjusted to my body because the nausea is back. Some Gastric Emptying studies come back normal if you take it on a good day. How were you feeling on the day of the test? I hope you can get this resolved soon. Can you take temporary disability at work till you find something that helps with your symptoms? Hang in there chicka Dayna

hang in there. I know how scary it must be but please try not to worry to much until you get the results. I remember after my MRI the tech said something strange to me (don't remember her words) but it really put me into a panic thinking something is wrong. I think they should be instructed not to open their mouths to the patients. I ended up being fine. I hope all is well for you Dayna

Thanks for all your imput. Ernie and CyberPixie I don't even know what to say. That's a long time and I'm sorry this illness has done that to the both of you. There's a special place in my heart for you two as you must be such strong women. I guess mine stuff is bothering me because there is something more going on that the doctors haven't figured out yet. Something is causing me to crash for a specific time frame. My ANS must just get exhausted and that's probally the only answer. Who knows. Thanks for your reponses. Belinda let me know what dr Grubb says. I see we both have the Pots, Gastroparesis and Autonomic Neuropathy in common so maybe some of his advise would apply to me also. Have a good day ladies Dayna

Lauren- I thought for awhile that played a part but it happens anytime. No matter where I am in my cycle. Actually I haven't got my period for 2 months and I'm still crashing super hard. Dayna

I feel like crud on a daily basis lately but when I get real sick with POTs and gastroparesis I am in bed or homebound for about 2 weeks each time. Sometimes a few days less and sometimes more. This happens every couple of weeks no reason and no known triggers. I don't know if this is normal for us or do I have something more going on? I really feel I would be able to handle this illness better (family wise) if I could get these episodes to be shorter. Am I alone in this? I'm under the impression most of you have good days and bad days. I have ok periods and bad periods. Does anyone else experience this? Dayna

I'm so excited for you! Great News! Dayna

Well it's an UTI. First time it ever came back like that. I was wondering why I couldn't tolerate the pain this time. So antibiotics here I come.........hopefully they work Dayna