micheller

I've had the bravo and definitely prefer that one. The specialist that diagnosed me with pots wanted me to get the 24 hour test. They do a manometry first to see where to place the tube. I've had this one done before also, it was tolerable the first time but I couldn't do it the second. The first time I had it done, the tech had me snort lidocaine gel which numbed me from my nose all the way down my throat, then they put the tube in. I could not feel it. The second time, the tech put some lidocaine gel on a big q-tip and stuck almost the whole thing in my nose, which was bad enough. Then she put the tube in. The lidocaine did nothing and the tube burned like crazy going in. Once she had the tube in, it felt like it was curling (she said it wasn't), I was gagging so bad I couldn't breathe and called it quits. I told her about the gel that numbed me all the way down, I would have been able to do it if it numbed my gag reflex, but she said that they don't want your throat numb which is a lie. I'm not sure if my lack of numbing was due to a different gel or from pots. I only say that because I had an egd after I was diagnosed and I woke up in the middle. My dr said he gave me enough sedation to put someone in a coma but I was still awake and fighting. That would have been my 6th egd but the first time I woke up in the middle. They put the bravo in when they do an egd. They give you a little black box, I had to push a button when I had reflux symptoms and keep a food/symptom journal for the day. The next day I dropped off the box and eventually the capsule falls off. I could feel a little tugging when I would swallow but it was more annoying than anything.

My specialist (who is 2 hours away) suggested I try compression stockings and wanted me to go to my PCP to get my orthostatic BP taken to see if there was a difference. I went on Friday. She took it while I was sitting, then standing, then laying down, one right after the other. I asked her if she was supposed to wait a few minutes in between and she said no. I told her I don't usually get symptoms until a few minutes later but she wouldn't wait. Every time my specialist has taken my BP he starts with laying down, sitting, then standing waiting at least 5 minutes. Is there a certain order the BP is to be taken? Do you get symptoms right away or after a few minutes?

I get this too. It reminds me if I move my glasses up and down, everything looks like it's moving but it's not.

I was early on in my last pregnancy, first trimester, felt great! I had a glass of orange juice one afternoon and I was in the ER within 2 hours. Every symptoms imaginable hit at once and I thought I was going to have a heart attack. It's been bad since.

Maybe I'm making up for lost time? Lol I think I'll have to prepare for a crash soon.

Since my main symptom is severe nausea, I don't eat a whole lot, maybe a few crackers a day and even that would make me feel sick for hours. My weight steadied around 103-105. Weird part is the last week or so I can't stop eating. I can't eat a lot at once but it's been all day, like someone flipped a switch. I'll have a sandwich, pretzels, noodles, celery, popcorn, crackers, every 2 hours...not at once of course. My weight is now at 115 which I needed to gain. I know in a few days I'll go back to not being able to eat for a few weeks. Is this a normal thing? I'm not complaining because I can eat and not feel so sick as long as I don't leave but I feel sick if I don't eat that often. It's like cravings completely take over. It's odd to me.

I've had symptoms for 3 years. I voted about the same since I was recently diagnosed and haven't had much treatment.

My feet turn purple and cold, was noticed by the tech during my TTT. I've been noticing the bloated/prego look later on during the day. If you have blood pooling in your feet, why do they get cold? You would think they would be warmer?

I will def check it out! I randomly get stabbing pain in the bottom middle of my left foot too. Only lasts for about 30 seconds but stops me from what I'm doing.

Not sure if this is a 'normal' symptom or not but it's weird. Early last week I woke up with my left arm hurting. Not sure if I slept on it funny or what's going on but it felt like a constant 'I just hit my funny bone' feeling, pain, tingling fingers, numbness a little bit. I couldn't put any pressure on that arm. If I bend it at 90 degrees it's tolerable but has the restless leg feeling. It lasted for about 2 days. Well it's back! I don't sleep on my left side so I'm not sure what's causing this?

Thanks for the replies. It helps to know I'm not alone. I talked to him about it and he said he's here to support me but doesn't know how. I'm not one for change so adapting to this new lifestyle has been hard enough. I'm far from the accepting stage yet. I was always a go-getter, if I wanted to do something, I'd do it. It's hard accepting I can't do that anymore. I'm determined to not let this pots limit what I can/want to do but some days are rough. I'm so used to not putting myself first, I have 3 kids to worry about also. I guess if he leaves, that's his loss, I'm still the same person inside, just limited. It has been really stressful and I'm sure that's not helping me. I hate to be a downer but the unknown is pretty scary.

This is interesting. I get this too. Lately it's been my fingers which makes it's difficult to type when they have a mind of their own. I've had my leg muscles twitch, more like spasm, my stomach muscles, eyes, arms. I haven't had anyone say anything to me about stares but I've noticed I do space out.

I'm like this too. I usually find something to keep me moving around. My boyfriend always tells me I should sit and relax but it makes things worse. I have to take little breaks when I'm sitting to do my homework or I end up rereading everything before I understand it.

I'm only on salt tablets but I haven't seen a neurologist yet.

How does your pots affect your relationship with your spouse or partner? I've been with my boyfriend for 13 years, since freshman year in high school. We've been through everything possible. But this is really taking it's toll. He thinking about leaving. If he leaves, I have nothing. I haven't worked in 3 years except for the day and a half this week. I don't have an income. I know I've been withdrawn but I don't like people, anyone, to see me suffer and I've told him that plenty of times. I know he wants personal time with me but that's difficult when I'm bathroom bound from the nausea. I can't do a lot of things I used to. It's bad enough I've had to give up my social life, any life really. I don't know what I would do if he left and it scares me. I guess I'm wondering how you deal with your symptoms and still have a healthy, active relationship. Maybe I'm missing something.

I don't get more than 5 hours of sleep. My nausea is so bad I end up staying awake until I literally crash because laying down/reclining makes it worse. I'm sure lack of sleep doesn't help my symptoms. I think I'm going to keep a journal about my symptoms, the severity, and how much activity I did to see if there's a trend somewhere.

How do you know when you are having a flare up? I've seen it mentioned a lot but I'm not sure how to tell. I mainly have the same symptoms daily, worse if I'm more active. I know when my reflux flares up. But I'm curious about this.

I started working yesterday after 3 years. I was offered a great job at the county I live in. Yesterday went ok, had some light symptoms but tolerable. Today I had to go home at lunch. i was completely wiped out, had to hang onto my chair a few times from being light headed. I feel so defeated and discouraged that I had to leave. I haven't told my supervisor yet, kind of afraid to. It's a desk job so it's not that hard but sitting for so long causes symptoms. I figured I would 'suck it up' and work and now I'm just frustrated I couldn't even make it 2 days. I said I wouldn't let this take over my life but as every day goes on, it seems like it's taking over. On my way home last night, I had a bad foot cramp...of course in my right foot while I was driving. Then about an hour after I was home I got one in my left foot. I went to bed about an hour later. I woke up a half hour after I fell asleep and my right calf was cramped and so was the top of my left foot. I tried to get up out of bed to walk it off but my left knee gave out. And then I just sat on the floor and cried. Are these cramps normal? They each lasted about 20-30 minutes. I drank enough fluids so I wasn't dehydrated. This is so frustrating and every other emotion there is out there.

I did work for 2 weeks last year and found it very difficult to get up in the morning. Since my nausea is it's worst at night, I don't usually go to bed until really late. It was hard to concentrate looking at a computer screen for 8 hours. But like you said, I'll try it again. The job I start Monday is temp, until the end of the year, so I'll tough it out. What kind of pain do you have with your EDS? Like I said, it's only in my hips and legs but if feels like they are in a vise. When I had the autonomic dysfunction test, the technician put electrodes on my foot, ankle, knee, and arm. She started the machine, I couldn't feel the one on my foot at all. I couldn't feel the one on my ankle or knee but felt it in the middle of my calf. My feet and ankles are numb all the time. She said it's normally a sign of nerve damage. Also during the table tilt, she put me up to 70 degrees for 15 minutes. My feet were turning purple and very cold, among the other effects from the test.

I don't think I've been tested for Celiac's. I've had so many tests I'd have to call and ask. Lol I only have Zyrtec here right now. I'll try that with the Zantac. I'm really hoping this helps! Thanks for the advice!

For the ones taking Domperidone, where do you get it from? I have to order mine from Canada since it's not locally compounded anymore and not FDA approved. It's getting very expensive to order it and it takes a few weeks. It wasn't covered under my insurance before but I just had to drive a few blocks to get a refill.

How many mgs of each do I take and when/how many times a day? I'm willing to try anything at this point. Oh and how long does it take to see improvement?

The current meds I'm taking are: Omeprazole 20mg x 2, zantac 175mg as needed, lorazepam (ativan) 1mg at night, zofran 8mg as needed, domperidone 20mg as needed, sodium chloride 1gm. I'm supposed to be taking Effexor 37.5mg for depression but haven't taken it for a while. This is interesting because I have tried every OTC and rx med for reflux with no improvement. In fact, I had some weird side effects from some. Nexium gave me edema and I started getting bad anxiety attacks after I started Aciphex. The others did nothing. I do take Claritin in the summer for allergies but not daily. I do have migraines/headaches daily but don't take anything for them. I have IBS-C and take senekot when needed. It's the only thing that works probably because it's a stimulant lax. I wonder if my GI can prescribe something for MCAD as a trial. It's so nice to hear about your son! It gives me some kind of hope I won't be doomed with nausea forever.

Julie, yes I've had the gastric emptying and manometry. The manometry was torture, I hope I never have to do that test again. Both came back normal but was put on domperidone anyway for nausea. It helps to a certain degree. I have to order it from Canada now, we have a local pharmacy that made it but it was closed. I will look into MCAD. I'm new to pots so all the causes is a little overwhelming. I'm not sure if I can vomit, I haven't needed to and prefer not to find out! I have a fear of vomiting, it makes it even worse to leave the house when I'm nauseous. I see a GI at a teaching hospital. He's the one that diagnosed me with pots. I haven't been to a neurologist yet, I have an appt in Dec. How do they determine if it's neurological? I take lorazepam for anxiety but only at night since it makes me drowsy. It does help take the edge off, I can definitely tell when I haven't taken it! My primary prescribed it but doesn't want me to take it unless absolutely necessary since it's so addictive. I'll have to ask about Klonopin also! Thanks for all of the great info!

Hi Anna. Yes I have. I've had the nissen surgery for reflux 3 times and the diet includes clear liquids, then liquids, purees, anything chewed to a mush, and normal. Sometimes I think liquid makes it worse because it just sloshes around.