micheller

I'm not sure if this is/could be a pots symptom but it's quite embarrassing. I've notice the last few days I've been *whispers* leaking urine. Not a ton, few drops. It's random, not when I cough or sneeze. What gives?!? I don't need another issue. Gah!

I was told I could alternate them every 4 hours. I can't take phenergan, it makes my symptoms worse but I'm fine with zofran. I have the dissolving tablets, not sure if that matters.

I don't take meds for pots. I had a horrible flare up before I was diagnosed. I was bedridden for a little less than a year, slept the time away, lived on a handful of cheerios a day. I weighed 103 and I'm 5' 6". My GI issues were awful too. I ended up having 3 surgeries in a year for reflux, now my GI thinks it's nerve/pots related. I'm not sure what I did that helped me get a little bit better from that flare up but I had 3 kids and couldn't sleep all day. I think forcing myself to get up and move, trying to ignore my symptoms helped. I slowly was able to start eating again this last December. I've gained 30 lbs since and happy to say I do not look like a skeleton anymore. I still have a lot of symptoms that keep me housebound but I'm not couch/bedridden. It was a long process but with the lack of diagnosis my drs didn't know what they were treating. I was diagnosed with numerous things before pots, depression, anxiety, ibs, gerd, medication side effects, esophageal spasms, etc. I hate taking meds as I get the 'rare' side effects so I've been doing the 'grin and bare it'.

We have a 4 foot pool that we've been in almost daily for the last month. I can only stay in for a little while or it gets hard to breathe and I have chest pressure. When that happens I get out and I'm out of breath. Otherwise it feels good

When I first got sick I would barely sleep, nausea kept me up. I would get 5 hours top a week. Then I went to sleeping a lot, over 10 hours a night. I had an iron infusion and I got 6-8 hours a night and felt great for a week! I think my iron has wore off because I'm back to sleeping 9+ and have to drag myself out of bed. No naps for me, my 3 munchkins don't allow it.

He said I will get benadryl and hydrocortisone in my iv before I get the iron. Do you remember what kind you got? He said he's giving me the iron dextran but I've read a lot of people have trouble with that kind.

That is great to know! He said I might have to get it repeated, hoping not. I've read some really good and awful things about it.

I have to get an iron infusion next week. Has anyone had one? The dr said there isn't side effects unless there's an allergic reaction. I'm curious if anyone has had one and what the side effects were and how long it took to feel better?

I go through spurts of lack of sleep and too much. For weeks at a time I can go on 2-3 hours of sleep a night. Weeks after I could sleep all day and still be tired. I'm currently in the 'too much' sleep phase. If I get woken up during the night I want to sleep longer, like I haven't slept at all before hand.

It's so good to know it's not just me or all in my head. I will force myself to go somewhere but I feel awful the whole time. Usually as soon as I get out of the car I start feeling better. How do you deal with this when/if you work? My last job was so easy, for a 'normal' person. I was doing data entry for a roofing company. I sat most of the time, barely had work to do but I felt horrible. I would love a more active job but I don't think I could handle it. I don't HAVE to work right now but I'd like to have some kind of income to help out. I don't think I have enough diagnosis for disability.

That is interesting with the stomach migraines. I've suffered from intestinal issues all my life, ended up with a colostomy in 2006. I've also had stomach/reflux problems since I was pregnant in 2009. I've tried all the meds and had 3 nissens with no relief. I should bring this up to my dr.

That makes sense with the lights. I didn't think of that. I get motion sickness too. Maybe that's what causes my migraines? I'm more symptomatic while driving if it's sunny out, the sun flashing between trees is the worst. The only good thing about it is my drs are 2 hours away so I feel awful by the time I get there.

I try not to leave the house because every time I do I get awful migraines that last the rest of the day. It doesn't matter if I just go down the street and back, instant migraine. At first I thought it was from the sun but I can sit outside without getting one. I also get really tired after I get home, migraine or not. Yesterday we went grocery shopping. The store is 3 blocks away. I started a migraine when we got there. 20 minutes into shopping I was exhausted. It's weird because I can run around the house all day, I get tired but not really exhausted, and be fine but once the car is out of the driveway everything hits. I have brought up the migraines to my neuro and was prescribed meds. She didn't seem too concerned about it. This makes any errands, appts, school functions, kid activities very difficult. At first I thought it was anxiety attacks but I don't think they are. All of my pots symptoms kick in. Anyone with this and what helps?

I have this issue also. I've had all the meds and 3 nissens for my severe reflux with no relief. My nausea is my worst symptom. My neuro thinks my gi issues are nerve related. If that's the case, I'm not sure how that is treated or dealt with. The only thing that helps the reflux and nausea is to not eat. Chrissy, I get migraines also but not sure what you mean by 'seizure' activity?

Thanks for the replies! I don't see him until July so I'll print off as much info as I can find.

I see a hematologist for the first time in a few days. I was referred by my neurologist for low blood count and iron. I'm going to ask about mast cell but is there anything else there is that I should ask about? I'm not sure how knowledgeable he is with pots.

I've seen my neuro twice. The last appt she wanted to refer me to a hematologist because of low blood count and extremely low iron. She said she had to send the refer to my primary so she could suggest a local hematologist, my neuro is 2 hours away. I called my primary yesterday to see if they got the referral, nope. Called my neuro to see why it wasn't sent, had to leave a message, haven't heard anything back yet. I was supposed to have an appt for a follow up with my neuro's assistant yesterday but cancelled. When I called to cancel, I asked what my appt next week was for. They said it was for a follow up with my neuro. And neither can be over the phone. I don't get why I would have to have 2 follow up appts a week after one another. If I lived closer it wouldn't be a big deal but I have 3 kids and can't just jump in my car and leave. Not to mention the 2 hour drive is rough for me. They know I'm not local. Since they are a medical college hospital I guess I was assuming they would be more flexible. I'm just sick of the run around and not getting anywhere. I'm doing 'ok' without meds so I'm about to call off seeing a specialist completely and just deal with it. To top it off, we moved in with my fiance's parents which has been super stressful. 4 adults, 4 kids, 5 dogs, and 2 cats is testing my patience. Lol We have to sleep in the basement and it's making my allergies and head symptoms flare horribly! I've been trying to keep up with the housework since I don't work but it's so draining. His dad had a drunken fit a few nights ago saying I'm lazy, don't do anything, I neglect my kids because I sit outside and read while they play. I have to clean up a trashed kitchen every morning even though I cleaned it before I went to bed, keep up with all the laundry, house train their one puppy, make all meals, clean the house, and take care of my kids. I guess this turned more into a rant but I'm beyond frustrated.

I haven't had a problem with my insurance covering it. My GI prescribed the dissolving tablets. They taste like rotten strawberries but they work faster for me. Can you ask the pharmacy why they won't cover it?

Yes, I can't even sing along to the radio anymore. My dizziness gets worse also if I laugh more than a chuckle or if I'm talking like regular conversation.

I talked to my neuro yesterday. She is referring me to a hematologist because I have horribly low iron and a low blood count. She told me to ask them about mast cell testing. I haven't noticed any triggers. They just kind of pop up. I will have to check out the low histamine diet, didn't know there was such a thing! I take Claritin in the spring and summer for normal allergies and omeprazole for reflux. Lyn, I'm trying to stay away from Froedtert, not because of the drs but it's 2 hours away and hard for me to get there. If I can't find a local dr that is knowledgeable with mast, I will contact Dr. Lee.

I suffer with this also. I hate leaving the house as it results in an attack every time. I take passion flower. It helps calm down. It works fairly well for mild attacks. I also give it to my 6 year old for adhd. Neither of us has had any side effects.

I see Dr. Peltier. She's thorough with her testing and listens. My GI at Froedtert was the one that diagnosed my pots and then referred me to my neuro.

Katybug, that's what the ones on my fingers look like! At least I can give them a name now. Do yours make your joint hurt on the underside too? The ones on my toes are different, just red dots but feel the same if I press on them. They aren't only on my joints. Very interesting. I don't have any specialists besides a neuro and gastro. My neuro wants to send me to a hematologist for my extremely low iron and blood count. I'm still in the testing phase so been researching a few things myself. I will have to see if she will refer me to someone. Ana, I live in Wisconsin.

I've been reading up on this and my symptoms do fit. I called my neuro to see if I can be tested for it. I get a few things that I'm not sure if it's a symptom of mast. I get these lumps on my fingers, usually on the knuckles closest to my nail, takes up half my knuckle. They do hurt more in my joint if I press on them. They are red and go away after a while. I was getting them so often that I went to my PCP (before pots dx) and she had no clue what they were and gave me antifungal cream. When I get these lumps, I also get red dots on my toes that itch/hurt. These look more like bug bites but are not. Like I said, I've had these for a while but blew them off until I read the symptoms for mast. I have a lot of skin sensitivities including the sun, hair, cardboard is a big one. Does anyone get the lumps? Does this sound like mast?

They didn't do the needles on my feet, only my leg and arm. The other part was on my foot, leg, and hand.