DSM3KIDZ

I also deal with alot of nausea. It used to be constant but now it comes and goes. I have gastroparesis so if I eat the wrong thing I get nausea. I usually get nausea when I'm hungry. If I keep food in my stomach I'm fine (which isn't helping my weight) Also I get nausea before migraines and hormonal shifts is when it's at it's worst. i'll take 1/2 pill of phenergan 25 mil. and that helps me. Other times if it's along with a migraine I take vistral. Good lick and give them meds a try. I avoided them for 9 months and suffered from nausea everyday so now at least I get a break somedays. Dayna

Poohbear- I just wanted to say I failed all the autonomic testing -TTT, blowing thing, and sweat test. Meaning I didn't pass. I don't sweat and the bp dropped on the ttt and blowing thing. So they say I have autonomic neuropathy- autonomic dysfunction- same thing. Thanks for your imput. It helps me figure this all out alittle bit. The crazy thing is we'll probally never figure any of this out. We are all probally the same in having an autonomic dysfunction but different in our symptoms I'll let you rest now, Thanks Again Dayna

Congrats what a beautiful baby. I'm so happy to hear your feeling good also. Hang in there and get your rest if that's possible. Dayna

Sunfish- Thanks also for the response. They said my bp dropped during the TTT so that's what determined it , I guess. I don't pass out. I guess when I'm systomatic I should track my hr and bp and see if that plays a part. I've never checked to see if it was causing my symptoms. I have gastroparesis (slow gastric emptying) so I thought that caused the nausea and the nutrition was causing migraines. Thanks for responding dayna

Poohbear Thanks for responding I had all that checked and I'm okay. I think I've had about every test I could now. When the neuro checks my orthostatics over 10 minutes my heart rate and bp go crazy high and low. The neuro was actually alittle shocked at my first appointment but it didn't bring on any symptoms for me. Last time my ortostatics were normal over 10 minutes which I'm excited about but we'll see in 3 wks if the stays or if I was just having a good day. My heart races faster at rest than a normal person but I don't feel it racing or feel dizzy or lightheaded. I'm not complaining, I know it's a good thing I just think if I'm misdiagnosed than I need to do some more searching. I failed all my Autonomic testing so I'm just confused!!!!!!! Thanks Dayna

I just had a quick question. Alot of you post about fast heart rates and dizziness and bp stuff and that seems to be most of the concern. I don't experience any of that. I have mentioned in the past a twitching on my right side of chest but that's it. Probally just muscle spasm. Anyways my main symptoms are nausea, migraines, occassional brain fog, heat intolerance, and minor fatigue. Now they are debilitating at times. I'm usually pretty normal for 1 or 2 wks (if lucky) than systomatic the rest of the month. I guess my question is does this still sound like POTS? I failed TTT but didn't really feel any different during the test. Could it be wrong or could I be misdiagnosed? Could I just not be to the point of feeling heart rate bp problems and it comes on later? Or do some people just not have those specific symptoms and have symptoms like mine. I asking because alot of you have ALOT more knowledge about this stuff than I do and sometimes I can't relate to alot of the posts and feel bad not responding but I just don't have those symptoms yet and don't know how to respond. I want to support others like you have been there to support me the last few months. If it's a topic about migraines or nausea I'm the "go to girl". If anyone understands what I'm asking send me a post Thanks Dayna

Neurologist -POTS/autonomic neuropathy Gastro -Gastroparesis Gyno- women stuff family doc - any thing that's left I want to find a doc who has info on testing for autoimmune, that's my next venture. Dayna

I just wanted to say I'm sorry about the scholarship. When it rains it pours. I agree with everyone else that you can't give up. If this is what is keeping you going there's got to be a way to achieve your goals. As with anybody with disabilities your fight will have to be harder than the average but your success will be that much greater. Good luck to you dayna

I have never took zomig but I do take relpax and I know it makes my heart race and feel drunk and weak. I slur my speech and just feel awful on it but it does stop the migraine. So if I can I sleep it off and after a few hours 2 to 3 I usually start feeling myself again. I notice after I take my migraine meds -which is at least 2x a week I get depressed from it for a few days. So the side effects **** but so does the migraines. Maybe try 1/2 a pill. That's what I'm going to do next time. Dayna

As most of you know I'm in the processes of considering an antidepressant. What is your experience with weight gain. I just fear I'll put on alot of weight and because I can only do little exercise and can't eat high protien and veges etc (gastroparesis) than I'll be upset that I gained alot of weight. Is there any antidepressants that cause weight loss? My doctor wants me to start nortriptlyne (however spelt) to stop migraines. What is you experience with antidepressants and weight gain? Dayna

Hi everyone. I need some advise. I've had my neurologist for 4 months now. She seems to know alot about A.N./ dysautomia. She came from Mayo and has alot of contact there re: testing and stuff. Overall I thought she was a great doctor. I never called for her advise before so I'm not a pesty patient. Anyways I have called 4x in the last week and talked to her assistant asking for advise re: migraines. First I ran out of the samples of Relpax and insurance won't pay so she needs to write me a pre authorization or find a different brand. Also I can only tolerate 1 dose of relpax (migraine abortive med) so if it doesn't abort my migraine what should I do? This are the simple questions I asked and she never calls back assistant or Doc. So than I call the next day and so on. Well since I don't have any meds I had a migraine last night that is still her tonight. Over 24hr but the pain isn't as severe as earlier so it must be coming to an end. Anyways I feel I shouldn't have to suffer without any meds or call back again and again. I want to tell her off because I am really upset that I'm not being helped but I don't have another doctor to turn to. At least not one with as much experience. What is my next step? I need meds soon incase I get another migraine. (usually 2-3 a week) and I told them I need a response and they say they will call back and never do.. I'm angry. One even two days I can see but 4 , come on. Any suggestion? Migraines ****!!!!!!!!!! Dayna

I also had to start out on the brat diet along with alot of soup and crackers. Now thanks to nausea meds I can eat normally. Just small frequent and very blan foods. Ex. 1/2 piece of plain chicken breasts and very cooked carrots. Things like that. Good luck. Dayna

I don't get the bruises you described but I do buise very easily. I'll get a huge bruise just from the littlest bump. Dayna

Thanks for showing us those pictures. Your belly is so tiny. How many months were you when you took the picture? I was HUGE. Your son is also adorable!!!!! I hope to see new baby pictures soon. Hang in there and good luck on your upcoming delivery. Dayna

Welcome! I'm glad you found this site. I just got dx in Jan 05 and my symptoms came overnight. I also have slow gastric emptying (gastroparesis) and am a young (28) mother of (3) 6,3, & 1. I see your a late nighter like me. Well it's great you have a good GP. That's important through all this unknown that there is someone who will help you. I'm sorry that you or anyone has to go through this. I always thought every illness had a magical pill. Boy was I wrong!!!!!!!!!! I wish everyone in this group lived near eachother so we didn't have to feel so alone. You will find alot of supportive people here. I'm currently not on any meds for POTS so I can't help with that. I just wanted to welcome you. Dayna

Thank You everyone for your advise. I went to my mothers and took a little mini vacation there to try to get a grip and sort things out. I did alot of talking with my mom and step-dad and just letting all my emotions out helped alot. They, along with my husband are at a point where they feel helpless. They physically can help with the kids and cleaning and stuff but they are sad for me and how miserable I've been this year. I still feel a sadness in my heart. I think it's just a process I need to go through because I haven't had any good days all month so I get real discouraged about having hope for improvement. Basically when I physically feel good I emotionally feel good and vise-vera. I have to learn to roll with the punches better. I'm going to investigate SSRI's a little more but that is definitely my next step. I'm sure I'll just retry Lexapro. When I don't know. Everyone here gives my courage to stick it out and maybe it will help me cope better with my "rollercoaster life". My husband is going to go to counseling, he's frustrated at the illness and not me. (Totally understand) This illness compromises his dreams to and sometimes because he's healthy I forget that. Thanks again, without all of you I'd be lost. P.S. I just wanted to say I'm proud of myself today I went to an event with my daughter and her school friends and I made it through. I was going to miss it because I was afraid I would get sick but I pushed myself and had a good time. I was sick but I just explained myself too the other moms and everthing went well.

Congradulations on your pregnancy. Like everyone said the high risk is just for precautions. I have 3 small kids but was dx when my last child was almost 1. So as far as the pregnancy I'm not sure how that is. I started having symptoms overnight. How old are you kids? Well my only advise is try to relax and not worry to much. Stay hydrated. Good Luck Dayna

I don't know much about your dx but I just wanted to welcome you to the board. I hope you find all the information and support you need. There's alot of wonderful people here who help whenever they can. Dayna

I am really confused by this dx. I did a search on it and the only thing that came up was my old post. How many of you had Autonomic testing? TTT which almost everyone had, sweat test, blowing test (forgot name) or any other autonomic testing. The reason I ask is I'm obviously having anxiety tonight and was reading all the causes of POTS and since I got POTS, Autonomic Neuropathy, and Gastroparesis am I on my way to PAF or someother horrible outcome? (All my symptoms came pretty much overnight) I know you guys are not doctors but it seems like all my systems are not working correctly (most noticable is the stomach). Since they don't have testing for most of those outcomes of PAF or MSA how do you know? I failed all my Autonomic Testing and I'm just thinking about my future for me and my kids and I'm getting alittle scared. I know you can't die from POTS but it's the unknown that scares me. Have you ever had anxiety over any of this when you guys were first dx. Are you gals worried about any of this or am I the only one and just have to much anxiety? Any imput might help clear my mind from the worst. IF I only had a magic ball. Thanks Again Dayna

Janine- I tried Lexapro 5mg for 3 days. It made me extremely nauseas and made me feel like I wanted to crawl out of my skin. Maybe I could cut it into 2.5 mg and start on the regimin you did. My neuro just prescribed nortrypline (I think that's how it's spelled) it's an old antidepressant for preventing headaches. But one of the side effects is orthostatic upon standing so that would probally make POTS worse? Did Lexapro help with headaches? Thanks for the reply. I'll give it some thought. Dayna

I hope it's okay that I vent here so much. I'm just lost and not coping well. I feel alone and have wore out all my resources. I feel like a baby because I've been crying for like 24hr straight. I feel like I can't breathe anymore (emotionally) I have been ill for almost 1 year and since than alot has come crashing down because of this stupid unknown about illness. My supportive husband is at wits end and became unsupportive about two months ago. He still helps out but pretty much closed me out and ignores the fact I feel so horrible and my marriage is suffering from this. I'm financially buried because I spent so much on alternative care, meds, etc. My kids aren't as well behaved as they were when I was consistant with them (very hard with this illness).My mother and only helper is backing off alot. It just seems like everyone is giving up on me including myself. What do I do now? I can't face this alone. I'm not that emotionally strong. I know things could be sooo much worse. My heart goes out to alot of you. Maybe things will be easier when the kids are older and maybe not. If I'm not nauseated I have a migraine. If I'm not nauseated or don't have a migraine I'm extremely fatigue and on most days I deal with all three. So if anyone has any words of encouragement please send them my way I'm in need of advise on coping because I feel like I'm losing myself and don't know my purpose anymore. Yes I see a counselor and no I'm not open to anti depressants (can't tolerate them) My hobby is scrapbooking but that hasn't been helping. It's actually making me miss the person I was, the one I didn't hate. Dayna

Hey Jessica I was wondering how you were doing. My belly got bigger with each presgnancy (I miss that). Well I'm glad to hear your relaxing and trying not to worry. Enjoy this time with Ethan. It's the last time he get 100% of you attention. I have three small ones and they all get my attention but it's not the same as it was when I had one. I could sit and listen to her for hours and now she tells her story and than it's her brothers turn. Siblings are awesome. I get so much joy watching the love my kids have for eachother. Even my 1 yr old is always kissing and hugging his brother and sister. He always says "yoves" (loves). Sorry for all the rambling but I'm just so in love with my children and was having a bad pots time but thinking of them makes it all okay. Good luck through your delivery. I'm sure you'll do great. For me labor got easier each time. I also think it's cool despite illness your going yo have a beautiful family. Well next time you get in the toddler pool send a splash my way (milwaukee, Wi) I've been sitting in ours for the last 3 days. My kids keep saying "mommy if your going to keep swimming with us we have to get a bigger pool, maybe a gigantic one so daddy can come in to" ---so sweet Take care Dayna

I realized my migraines/headaches started around the same time I elevated my bed. I'm going to try a few weeks lying flat and see if that helps. Dayna

Trust me, your not alone. I don't even kiss my cuties on the lips unless I know they are completely healthy. I know that probally sounds mean but I have to stay as healthy as possible to take care of them (6,3,&1). Even though since I had pots, I haven't caught any colds or flu bugs. Which I used to get everything my kids got before. Maybe because I always feel crappy I just don't realize the difference between a virus or pots. Dayna

Mary from Ohio They did a ct scan and mri and the mri showed a small spot that they felt was nothing to worry about. She said she sees that in alot of migrainer's mri. I just started having them 2 months ago so that's weird. I had a headaches 1 or 2x a year but never migraines. So on top of POTS and Gastroparesis I have yet another dx with no cure. I'm hoping they will subside. No one in my family has them and like I said before neither did I. I wish you well with yours. Dayna