micheller

I get this too! It takes me a few hours to be coherent enough to function. The last two days I had to help my mom at work which meant being to work at 6am to clean. I can't say I can remember what I did or who I talked to. I feel the same if I sleep 3 hours or 10. I wake up very jittery/shaky but haven't noticed any tachy. My neuro tested my iron and it was less than 1 so I had an infusion. I thought that would have helped with the sleepiness but it hasn't.

Yes to all but mouth. My eyes are always dry and makes it difficult to wear contacts. My skin is the worst. I could sit in a lotion bath and still be dry. Now that it's getting colder out, it's getting worse.

I was horrible after I ate some dinner. I took 2 zofran and they did nothing. I had my husband get some of the red and white peppermint candies. Worked like a charm! And they are cheap. Just and idea.

Most of the things on the first question I haven't done since I've been sick. I also can't close my eyes if I'm standing. I had my husband install a bar in the shower for me to hang on to. I don't drive unless I have to and don't like being a passenger. Motion like that makes my symptoms worse. The sun, everything moving around me just sets me off. If I do have somewhere to go, my husband drives and I will play a game on my phone the whole time.

Thanks for the info! I've been looking for something to do from home to contribute to finances but most were scams like you said. Is there online classes to learn those? I'm not really creative but I am computer savy so this might be perfect.

I cut my 1mgs in half. If half doesn't help, I'll take the other half. I've never taken more than 1mg.

My test was scheduled for today. I got there to check in and the lady told me I had to pay $200 up front. I asked if they could bill it and she said no, I had to pay the $200 and the rest would be billed. I told her I don't have that considering it's almost Christmas and I'd have to reschedule. She told me they require a 2 hour notice and I'd be considered a no show. I now have the test in 2 weeks. I'm not sure I'll have the copay by then but I'll try. How long do the effects last after the test? I don't want to be down too long. My son has his Christmas concert that night.

Zoloft didn't do anything for me but my primary started me out at 100mg. I thought she was crazy an quartered it. I upped the mg every 2 weeks so 25mg for 2 weeks, 50mg for 2 weeks, etc. I was on it about 3 months with no effects. I've also tried Prozac which literally made me crazy. It was horrible. Lorazepam works best for me but makes me drowsy. I've found breathing and change in thinking help more than any meds.

I've seen this neuro only once but I will definitely ask about follow ups over the phone! My neuro in Milwaukee wouldn't do it, I thought they would be more accommodating for people that have quite a drive to get there. Rain, that's about what we pay for a family plan. No matter how many people are added, it won't increase. For a specialist visit it's 60, ER is 150, urgent care is 100, primary is 30. I'm not sure how they figure out the copay for testing, I think it's a certain percentage but not sure. My last med refill was 10 each so that wasn't bad. Next year shouldn't be too bad since we will hit the deductible in no time but until then.... I've been looking to work from home but that was a dead end. Do you mind if I ask what you do? That is a big medical debt, poor guy! I will look for that on their site. Thanks!

With our family plan, the yearly deductible is $3700. By the time we hit it it will be time for it to renew, go figure. Lol I'm not sure if we would still have to pay the copays after we hit the deductible. I was added to my husband's insurance in August so I'm not too familiar with it yet except for forking out the money. His monthly payment is pretty low so I will have to ask if we can raise that to lower the deductible. I had state insurance before I was added to his and didn't pay anything but a few dollars per med. I will have to ask about waving or lowering it. It sure is expensive being sick!

What do you do when you can't afford your appointments and tests? Our copay is $60 for a specialist. Between my neuro and gi I end up having at least 3-5 appointments a month. Plus the cost of the tests. It really adds up. I already have payments set up for the $800 I owe for an EGD. We are barely scraping by and he makes just over the income limit for any state assistance. I've applied for disability last year (denied twice) since I can't work but of course they want to see all of this on paper and test results. We just can't afford it. Double edge sword.

When I first got sick, before I was diagnosed, I couldn't walk into a store. I remember going to Target once and I had to sit on the floor. I tried going to another store and I was symptomatic as soon as I walked it but sucked it up. By the time I got to the checkout I was pale, sweating, horribly nauseous, on the verge of passing out. I stopped going shopping all together. Fast forward to now, I can go to the store for quick trips. I still get symptomatic but not as bad as I used to. For me, I think it's the lighting. As soon as I'd get out to my car my symptoms started to fade a bit. I was so frustrated I'd cry the whole way home. Someone on here said that some potsies are sensitive to the florescent lights flickering. My compression stockings really help if I'm going to be standing for a while. My neuro said not to use the ones that go to the knee because it can put pressure on a nerve. I know I'm not much help but just wanted to share a somewhat positive story. Keep your hopes up! It's a rough ride.

I just wanted to add that when explaining symptoms to your hubby, it helped for me to correlate them to something he can relate to. Like 'you know when you're drinking and standing up and the world spins....' or 'that 2 seconds before you vomit and you're sweating, heart pounding, shaking....'. I think he understands better that way.

I've been nauseous for 4 years and nothing helps. I've tried antiemetics, eating, not eating, home remedies. All fail. I have severe reflux also so I think that contributes to mine. I think this is one of the worst feelings, I'd rather have constant pain. There's many causes and it's a chore trying to figure it out.

My GI did the light shining test and said mine don't constrict like they're supposed to. I get the uneven dilation also. That's when I tell my boys I'm a vampire. HAHA! Have to throw some humor in with this disorder. I notice a difference in my vision when they are uneven, everything gets blurry on that one side.

Diamond, I get headaches/migraines daily. I'm fine before I get out of bed in the morning. Then I get this gush feeling in my head and instant headache. I've never had ear issues so all of this is new to me. My neuro scheduled this test. The chair sounds awful. Any type of spinning is bad. What kind of exercises were you supposed to do? She had me walk heel to toe which I did ok, I don't usually have a problem with reading but driving is a huge trigger. Katie, I used to do yoga and pilates too. I look like a mess if I try that now. I think I do ok balance wise as long as I can keep my head looking forward. If I look down I get off balance. I just figured this was another symptom of pots.

I can totally relate. I have 3 kids but I can't work. My husband works nights so I'm on my own during the day until he gets up. Most days it's hard to keep going. My oldest kids try to help out a lot after school but I think they make more work than necessary but they try. I was with my husband before I got sick so he's seen the healthy me and I know he wants that back. He's seen me go downhill and hit rock bottom. I know he gets frustrated I can't do the things I used to. My sex drive is next to nothing, I just can't muster up the energy. I know that's taking it's toll on him but he understands to a point. Of course his selfishness takes over some days and he gets mad. Usually a little snuggling on the couch lightens the mood, since I'm laying there anyway. I would talk to him. Tell him exactly how you're feeling. Does he help with anything? My husband used to come home and park his butt on the couch. When I asked if he could help me with this or that he would say he worked all night. So I went on strike. I didn't clean, cook, laundry. He had to do it. After that he changed his tune. Guys can't read minds and we need to be blunt with them. Maybe he doesn't realize all that you do or how bad you're feeling.

It's not really important to me other than my husband. You can tell someone exactly how you feel but they won't understand until they have to feel it. Rachel, I do feel that way also. I was sick before we got married and I always wondered why he sticks around and deals with it. Why wouldn't he pick someone who is 'normal' and can do 'normal' things every day instead of just once a week, if that. My husband can get frustrated also. A big thing for me is motion making my symptoms worse so I rarely leave the house. He does the grocery shopping and errands which I know he hates. It can be difficult to deal with from the other side but we're still able to love and be loved.

I get it when I'm tired. It usually goes away after a few days. Annoying though! I've had my eye lid twitch too. That was odd.

Yes, she said it was for vertigo. She didn't go into details on what the test entails though.

I seen a new neurologist today. She's not convinced my dizziness during movement is caused by pots? She scheduled me for a vestibular assessment. She thinks I have an inner ear problem because my symptoms get worse when moving/driving. Anyone have this test? What does it involve?

I have problems falling asleep from my reflux and nausea but once I'm asleep, I'm out. I'm really stiff and weak when I wake up. I usually lay in bed for a bit and move my feet and hands. If I try to get up right away my legs/ankles will give out.

I can if I have to. I don't like to since the sun instantly triggers a migraine and I get bad motion sickness. I bring the kids to school but that's 3 blocks away. I haven't driven much since I've been sick so 4 years. We used to take random road trips through the country for a change of scenery, I miss that.

Gerd led me to my pots diagnosis. I've tried every med and 3 surgeries with no relief. I get the same symptoms if I eat or don't eat. I can eat the same thing at the same time for a week and every day have different intensity of symptoms. I'm sick of smelling, tasting, feeling acid and I'm not sure what else there is to do after meds and surgery. My GI thinks it's my nerves acting up but who knows.

I have no advice but good luck! We'll miss you here in WI! We are in the middle of moving within the same city but it sure takes it's toll. I feel useless since I can't do much. I hope the change makes you feel a little better.