DSM3KIDZ

I just need to vent for a few minutes.. I feel like I have an internal vaccum cleaner in me and every few weeks the switch gets turned on and it ***** the life right out of me....... Or like I'm a wet rag doll who was dropped from an airplane on to the freeway.......This *****. For a few weeks I feel like I am on top of the world (no symptoms, no nausea, some headaches) and I always start feeling hope that maybe this recovery is the real thing and I can put it all behind me. Than out of the Blue I fall into a hole. That's hard to deal with. I can't make any plans for the future weeks because I don't know if I will be me or ZOMBIE DAYNA. I hate having my life put on hold. Okay at least this time (first time ever) I was realistic and new I was going to eventually have to give up "superwomen" and go back to couch potatoe and wait it out. So basically I physically crashed but not emotionally... That's HUGE for me. All the other times it was like realizing I'm sick over and over again. But now I realize I just have to relax and wait it out and start the whole cycle over again. Does anyone know what our triggers are? I can not figure them out. I know I'm going to crash when my contacts feel blurry, I get a dry spot on my lip, I get cranky and my nausea starts. So I figured out the signs but not the triggers. Oh well I'll just ride the roller coaster of dysautomia. They should name a rollercoaster after us. That sounds fearfull........Come aboard the Dysautomia and hold on for the ride of your life!!!!!!!!!! Enough babbling thanks for listening in on my pitty party Dayna

Your are in our prayers I can't even imagine what your going through. I have a 6yr daughter and I hate when she gets a cold. I hope she can stay on the meds without complications, again your in our prayers. Dayna

I personally would take it but everyone reacts differently. I take 1/2 pill and I don't get tired at all. But this appointment is very important so take it with you and pop it in first thing after your appointment. You want to be alert to hear what the doctor has to say. Dayna

just giving you an update about the new med I was trying hydroxyzine pamoate (vistral) it works okay for the nausea but not at all for the headaches. I still prefer phenegan over this. 1/2 tablet seems to help me with the nausea. I hope you find something. I know first hand how debilitating it can be. dayna

Thank you everyone for all your responses I would be lost without this forum on friends. Everyone has given me alot to think about and I truley feel my kids are going to love me regardless and that's ALL I want. Evjoy the day Dayna

I haven't been able to post much lately but I've been reading all the challenges you've been overcoming and have been very concerned for you. I'm glad to see you have a list of goals. If you take it slow you will be able to adjust your life to fit your needs, just don't adjust your spirit. You bring people alot of courage through the way you handle your challenges and your life. Dayna

I'm stuck with people saying you look great so than what's wrong with you? Everytime I have to answer that I get tounge tied. The responses are you should be glad you don't sweat than you won't stink or you don't digest your food well than eat slower. I get all kinds of ridiculous responses. I now even have anxiety when someone questions me. So the advise I need from you guys is how do you answer the question What's wrong with you and why are you always sick, you look great. Maybe if I felt more confident about answering those question people would understand or at least try to understand what we all go through on a day to day basis. It's hard for me to answer myself because it doesn't make any sense to me either. I was young and healthy and somehow I now have autonomic dysfunction. Thanks Dayna

I didn't have POTS with my pregancies (at least I don't think) anyways my second pregnancy was alot more tiring then my first, and my third was better than my second, I was becoming a pro at it by that time.. The first one I could just worry about taking care of me and than my second I also had to keep up with an active 2-1/2 yr. old. I remember being real exhausted. I don't have much experience in the POTS area so I would think pregnancy alone is tiring and than add POTS, I can't imagine. Just get all the rest you can before the baby comes. dayna

I just realized that my eyes have been real dry so at least that answers the contact part. I'll have to get lasik cause I hate wearing glasses expecially when I have headaches. Thank You Dayna

Do POTS people experience blurred vision? I've had bad vision all my life. I had a major growth spurt when I was young and something happened to my vision at that time. Anyways My vision has been real blurry . Not all the time, mostly when I try to read something. Expecially when I wear contacts. Anyways, I'm alittle scared. Do any of you experience blurred vision?

Dawn A - Dr. rose Dotson is located at 5678 W. Brown Deer Rd, Milwaukee, WI. 53223 -----414-354-8700.

Thanks for your replies. I have no intentions on having more children anytime soon. There's not much action going on in this pots hole but I was just thinking about my future with the hopefullness of health. I also have three wonderful children and I was asking because they are going through alot and I would never put their happiness at risk if I have control over the situation. I guess we will have to see if the future brings health... Dayna

For those of you who have POTS caused by postpartum my heart goes out to you. Having a new baby and dealing with new health issues all at once must have been devestating. I don't know my cause, were still trying to figure it out. But I did get autonomic neuropathy (POTS) when my son was 5 months. Before that I was fine. Anyways my question is did you have POTS symptoms before you were pregnant or was it a sudden thing? Does anyone know what caused it since it was postpartum does that mean it was the hormones or the stress the body was under during delivery???? If this information is unknown like most of our situations don't get offend that I'm asking I was just thinking of my own family and if I can recover from this we would like to add to our family in 4 or 5 years and I was concerned if I did recover (I hope and pray) would I be more prone to postpartum POTS. Also are your symptoms going to go away or is it unknown like everyone else??? Thanks for letting me be nosey Dayna

Sunfish- I agree, I don't know how many had the autonomic testing. Did you sweat? I was as dry as a bone.... Do they know the cause of your AN? Maybe when I get the energy to post I'll ask who all had the sutonomic testing Dayna

Dawn A - That's so cool. I'm really looking forward to that group. I met with Kristen last month, she's so sweet.......... My parents live in Kenosha and I go there alot, I'll wave while I'm passing by Racine. Do you have a good doctor? If not I highly recommend the drive to Milwaukee to see Dr. Dotson. dayna

My neurologist prescribed me hydroxyzine pamoate I think the brand name is altrex ( I could be wrong) but it's an antihistamine to treat anxiety, and relieve itching caused by allergic conditions. The things doctors prescribe make no sense. She said to take it for headaches or nausea. Who knows I'm alittle scared to try it. I know antihistamines cause alot of drowsiness. Anyways I'll let you know if it helps me or not.......... Dayna

I've been diagnosed with Autonomic Neuropathy. My neurologist said pots is a form of neuropathy and so is my GP (gastroparesis). They start trying to find why this month. dayna

Thanks for the caring. My appointment went great! She didn't give me a treatment plan yet because she wants to run all the necessary tests to see if she can find the cause! Which gives me hope. She said what I'm experiencing is very real and if anyone wants to challenge me on it she'll give them proof that I'm going through a major life altering illness and of course I'd have some anxiety and depression. She said she would expect that and be worried if I didn't have those feelings. She kept asking me for more questions and listened to my concerns. She is from Mayo clinic so I have the expert without having to travel. Her name is Dr. Rose Dotson. She gave me meds to help control migraines and nausea which are my main problems. I felt a level of comfort in knowing I no longer have to fight for myself she is going to help me find my way. I feel so much better (anxiety wise). I'm going to crash........ I just wanted to give you an update. All the prayer helped I don't doubt that for a minute. Thank You Dayna

Thank you sooo much to all of you for your replies. It's true when your in the hole it's hard to get a perspective. That's where you gals come in. I'm going to give it some more time before I make a decision. I met with my neurologist yesterday and she's from Mayo and sound knowledgable so I'll give her a chance. I'm not on any meds yet so maybe they will help when we do treatment. There is going to be a POTS group getting together in my area May 10th. That's exciting. I do need an extra hand but need to do some research because I only have my mom. She works and goes up north with her husband all summer on the weekends and they both need that for themselves and their marriage. I have to see what someone charges per hour. I'll have to make room in the budget. I'm extremely tired today to I just wanted to thank you all for the replies. I'll check back soon! Have a great day Dayna

I am really going through a tough time down in the POT HOLE. I just got sick in Aug 2004. My pattern has been sick for 3 months , normal for two weeks. Well during those long sick times I have a real hard time being a mom. I love my kids with all my heart but feel they are suffering from me not being happy. My nausea gets so debilitating that just standing up or changing a diaper makes me want to puke! It's like a 3 month flu. I don't have the energy to be the mom I was. My friends don't understand so they turned away. My in-laws are workaholics so they don't help. The only help we get is from my mother who lives about 50 minutes away. I know that's not far but it's alot for her to drive back and forth few times a week. I am so blessed for her , she is my angel. I am at a cross roads, My husband is a firefighter and works 24hr. shifts ( has to live in the city)so I usually could use the help on those days. We could move to kenosha were my mom lives to make this easier on her and so she's closer for the kids. I don't know what to do. If we move my husband loses 10yr. senority and I know he will resent me.... but if we don't I'm going to exhaust the only help I get. I love my house and neighborhood what if this illness gets better? What if it gets worse? Have any of you had to make a decision like this? If we move I'm also scared my children will not view me as a parent because they already listen to my mother better. I try real hard to be consistant kids 6, 3 & 1 like to push my buttons when I'm sick because I'm not as quick to punish...... I punish them with love.... I'm not looking for you to make a decision for me just any imput would be good. Like I said before my friends turned their backs so I'm alone and can't call anyone for their opinion. I am so thankful for all of you. I don't know where I'd be without reading the couragous stories of my new internet pals. One more question why are there mostly girls on this site? Where are all the POTS men? Is that uncommon? Goodnight Dayna

I just wanted to let you know many people told me lexapro helped them with their stomach. Some G.I. motility doctors prescribe lexapro for the stomach. But like you I had a bad effect. Not only did I feel like I was crawling out of my skin, wanting to hurt myself, my nausea was at it's WORST. I only took 5mg for 4 days and reacted that quickly so now this is the second time I tried SSRI's and it's going to be the last. I'm now scared of them. I hope you find something that works for you soon. dayna

sunisshinig- my appointment is 12:45. Thanks for reminding me that I'm not alone and I can pray during that time. Sometimes I forget because I feel like maybe God forgot about me. It's the only way I can make sense of all this. Thanks for your prayers Dayna

I also deal with alot of nausea. It can be debilitating. I believe that the dysautomia causes the motility problems which causes the nausea. I haven't found much that works. I guess when I get real bad I take pheregan but only take it if the kids are going down for a nap or if someone is home helping me out that day so I can "check out" which is what the meds make me do. My GI said I have slow gastric emptying (Gastroparesis) which is why I have soooo much nausea. I think that's part of it but I feel better when I eat unlike the other with this condition. so maybe BP plays a part also. Sine I've been seeing a chiropractor my nausea has lessened from constant ---everyday---- to a few times a month, or around mensus for a week or so. If you find any good info let us know. The hardest part of all this for me personally is dealing with the nausea. so any info is well accepted! Dayna

Well I just fell into the hole again. I fell so far I'm covered with mud and am stuck. I should just stay here because when I'm good, I'm real good than out of nowhere (can't figure out why) I fall into the potshole and I emotionally can't handle it anymore. My roller coaster life makes me feel like Jekel and Hyde or like I have bipolar (I don't) because I switch from happy go lucky energized for 1 or two weeks to crab apple depressed angy mom for a few months... That's my update.I hope the rest of you are doing good. dayna

Hello everyone, well I waited my 6wks and have follow-up with my neurologist on Monday. I've been having alot of anxiety over this appointment. She did the autonomic testing (TTT, sweat etc). I called to see if we should do other blood work during this 6wks to "get the ball rolling". And they said no she will review my tests and start treatment. Is this normal? She never checked for Lyme diease, autoimmune, vitamin def. or any other underlining problem that could possible control POT, AN, GP. I've been put off by so many uncaring doctors that I'm scared she's just going to throw meds at me and shut the door? I don't know if I can go through that again. Starting from step 1. I hope I freaking out for no reason but doctors have scarred me by being rude and telling me it's all pshychological. If this doctor lets me down I don't know where else to turn Dayna