DSM3KIDZ

I'm about to pass out for the night but I just wanted to welcome you to the site and I'm glad that you decided to post. Like I've told the others I am new to this site and POTS so i don't have all the info on it yet. But I do know I have found alot of support and answers to my questions which has helped me out tremendously. I look forward to getting to know you have a good night! Dayna

I'm new to this forum so I don't have much advise to give.(Sorry) I am a 28yr mother of 3 (6,3 & 13mo.) I give you alot of credit. I always wanted four children but that's all in the air do to my new health issues...6 would be a handful expectially when your feeling sick. What are there ages ? Where are you located? I got sick in Aug 04 and I wish I could return to normal and be the active mom I once was.I tested positive on the tilt table test but haven't talked to my neurologist yet. It sounds like your experiencing alot of the same things we are. Did you look at the symptoms section on the homepage? Well I wish you alot of luck in searching for your answers. I have learned this group is a great support system for me. If you have any questions just ask and alot of caring people will respond. dayna

I just turned 28 and fortunately I've been a stay-at-home mother for the past 6 years. My husband is a firefighter and works 9 days a month so this has given us the oppotunity to have both of us around most of the time. So for that reason this illness hasn't affected my career but it could possibly affect my future choices (wanted to be an elementary teacher). I wanted to start working part-time before I got sick so we could put our kids in private school but unfortunately we'll have to put that on hold till I can work......... We own some duplexes so we get our extras from that. I used to handle the books and our own bills but I've found it to be too stressful and feel myself rechecking over and over because of my brain fog. I don't want to screw up our finances because I feel loopy. Good luck to you!!!!!!!!!!!1 Dayna

Morgan- Well I just turned 28. I also learned if there will be recovery it takes a long time. So I'm not expecting anything overnight. I'm sorry to hear you've been living like this for so long. I hope if research helps cure anyone you get the first chance at it. Dayna

That makes alot of sense but I wonder how we damaged our hypothalamus? If they can perform reconstructive brain surgery than why can't anyone figure us out?????? I know everyone has questions like these I'm just having a bad pots week and am feeling angry wishing there was more research into the management of our problems. The doctors have access to fix others who's conditions aren't as life altering when is it going to be our turn???????? I wish I would have gone to medical school or something so I could have answers to all of this.... Maybe one of my kids will become a doctor. Just venting dayna

I have been reading all of your posts on The POTS Hole and realize that the feelings are all to familiar. At least once or twice a month I fall into these days of pure exhaustion. I'm not tired just completely fatigued. My body feels heavy and I have a hard time getting daily tasks done without forcing myself. Sometimes I would go a month or two without crashing but when I do I have brain fog, feel disconnected from everyone and emotionally down. All these years I've thought it was hormones or a bug or just the exhaustion a mother experiences since it's only been since I had kids. But now after all this research and the POTS, AN dx I can't help but wonder if it's always been the POTS and I was just uninformed. Who knows it could also be a hormonal thing or something else but it's definitely got me thinking.......... I heard if you have sudden symptoms the chance of recovery is better. I was holding on to that hope because my symptoms became apparent overnight. Now I'm scared my chances just went down. Oh well, it is what it is eventually I'll get to the point of acceptance. I just was sharing what's on my mind. Have a good night's rest to everyone! Dayna

Amy- that describes me exactly. Let me know if you find anything that helps.... Dayna

Well thanks for all your advise. It just seems so weird that this all started together. I think my body is just extremely wacked out from all this. Hopefully things will settle soon. Dayna

I am so sorry to hear you also experience such horrible nausea. I had constant nausea for 7 months. I felt like I was in my first trimester of preganacy that never went away. One of the symptoms of POTS is slow gastric emptying (gastroparesis) and my gastro doctor said this is what casues the nausea. So i eat an extremely blan diet and never eat out unless it's soup. Unfortunately I have alot of starchy foods -pasta, crackers, rice, cereal etc. that is what seems to sit the best for me. I take pheregan when needed. I started to see a chiropractor and I've only had a few days of nausea in the last 2 months so I don't know if this is just temporary but I'm lovin' it. My nausea can be debilitating and I sympathize with you. At first my husband had to take family leave so he could take care of my 3 kids for the first 3 months I got sick. I hope if POTS can get under control so can the nausea. I'll pray for you dayna

Since I've had POTS my lips have been so chapped and dry I think they are going to fall off. Does anyone have problems with this? I have bought every product there is and still nothing works. I don't know if it's the POTS or not. I've never had this before. Also I am 28 and look like a teenager because of all the break outs my face has. That is also new. I used to get complemented on my complection now I'm getting like I want to hide with combination of chapped lips and acne............. Is this part of POTS? Dayna

I was wondering what type of doctors do you POTTERS see? I only see a neurologist-so far. I follow-up with her April 25th. Should I be seeing a Cardiologist/ Endo? I know you guys aren't doctors but my primary knows nothing about POTS so I have to ask someone. Do you feel it's important to get a work-up from all three doctors? I don't feel like anything is wrong with my heart, like I said in the past I had no idea I had POTS, I just thought I had stomach problems but I fear if the heart is involved are we more prone to heart attacks or strokes? Any imput would be helpful so I can see if I should ask my neuro. for referrals on the 25th Thanks everyone! Hope your enjoying Monday morning! Dayna

My life feels like a roller coaster. I will have a few days/weeks where I feel completely normal except for my plain diet I have no problems. My stomach is not nauseated, no crazy heart rates,no headaches, I can keep up with my kids, exercise (long walks and weights) clean house and every other normal thing you can think of. I do not over do it during these times in fear or relapse. And than out of no where I'll wake up sick again. Nausea, fatigue, sometimes headaches, depression, anxiety and just plain crappy feeling and this will last for 2-3 months Is this normal? I am thankful for my up times but if this has to do with autonomic nerves than why do they work sometimes and than take a break than work again? Everytime I hit a good streak i feel I hit recovery and get so excited. So I guess more than anything my emotions are do up and down from feeling good than bad. Dayna

Sorry to hear your having such a hard time. I send you my prayers. I also had constant nausea and it can be very debilitating. One symptom of POTS is slow gastric emptying (gastroparesis). I have that so it makes me nauseous. Maybe a GI doctor could help. I eat small meals and stay away from food that is hard to digest. I also got so extremely nauseous on lexapro 5mg I stopped after 3 days. It made me extremely hungry and nauseous at the same time which isn't a good mix. I wish you all the luck Dayna

I also notice when I'm having a POTS day I am very affected at the stores. I feel disconnected from the rets of the people, kinda of like I'm in a zone. I usually feel this instantly so if I get that way I walk right back out and schedule my errands for later or for my husband. I also notice the longer I stay out of stores I have this initial reaction but the next time I go it gets better. I agree it's the neon and the over stimulation. I brought this up to my doctor and she said it's not related to dysautomia so now I know she is wrong and don't feel like an outcast. I usually send my mom with money and have her shop for my kids cloths for the seasons because that always keeps me in the stores too long and I can only handle so much.

That's very encouraging news. Sometimes you get the crappiest doctors than it seems like God send us our hope. Where are you located? I need some good doctors. My neurologist seems okay. I have my second appointment Aug 25 but my family doctor never heard of autonomic neuropathy, POTS or gastroparesis, dysautomia. That just seems weird that a doctor hasn't heard of any of my conditions. So how can they help than? Congradulations it sounds like your on the right track. Dayna

I am praying for you & Jake. My heart goes out to you. Congradulations on the good news. What a relief. Love him up!!!!! dsm3kidz

Congradulations on your beautiful baby. What a blessing!

I've been reading alot of your posts re: Mayo clinic. I know everyone's insurances is different but how do you get in? So far my doctor said they will not approve an out of network referral. Do you pay out of pocket for the tests? Is it worth it? Do they do a complete work up? What kind of things do the do? do they check your heart, hormone levels, neuropathies, G.I. issues?

I have been sick for 8 months . The last 6 were debilitating nausea so I pretty much did nothing. I'm what they say deconditioned. Lately I've been walking 1/2 a mile and I'm exhauseted. I think I need to build up my tolerance again. But everyone keeps suggesting that I start with yoga since it stretches the body and destresses the mind. I haven't got my fanny up to do it yet but it's just an idea. dayna

I couldn't handle compazine either. I felt completely drugged and twitchy. I use promethazine 25mg but I cut it in 1/2. I still get alittle sleepy. The one that works the best with no drowsiness for me is zofran but I'm having trouble getting it. My G.I. said the others are fine. That ***** because I need to be alert for my kids. I will fight him on it if the nausea gets worse. dayna

I was just wondering, re: your nausea. Have you had the gastric emptying study? I have nausea - constant for months and when they did the study it showed slow gastric emptying (gastroparesis) one of the symptoms on the POTS page. There is meds for it. I can't tolerate them but maybe you could. The only thing that has worked for my nausea (sometimes meds but very sedating) is a chiropractor. I thought it was strange but gave it a try and now in the last month I've had nausea alot less frequent and alot less severe.I haven't had any this week at all . Maybe a flook but I'm excited I can get out and enjoy this nice weather with my 3 kids. The chiro said if there is sublaxation than there is a lack of communication between the brain and the nerves which causes certain areas not to function completely (ex. stomach). It's helped me alot. Hope I helped. I've been newely dx and don't know anything else about the meds involved yet. As for testing I had autonomic testing (tilt table, breath test, sweating, etc.)

I am also going through this with my neurologist. She did the autonomic neuropathy testing (tilt tablt, sweat test etc.) and plans to start treatment based on those results. So when I researched this site I found all the test that the doctors can do and I feel the same way as you. Shouldn't the doctors rule out or find imbalances so that they can give you proper treatment? I read in the previous post that all treatment is the same regardless so I guess as long as I can get her to rule out the majors lupus etc. than I will feel okay with that. My neurologist didn't even mention vitamin B testing. Isn't that important? Also my blood sugar or glucose (I forget which one) always came back abnormal but the doctors said they were within normal range. This always makes me wonder re: diabetes. Should I be concerned about pre-diabetes? The doctors never seemed to care about it. (Just wondering) Does anyone know the tests they do at MAYO?

well thank you for explaining that to me and good luck to you I hope you learn lots on your trip. Dayna

My doctor says I have autonomic neuropathy. Which I'm sure you know deals with the automatic functions of your autonomic nerves. There must be all sorts of neuropathies (?) because I have POTS and GP from the neuropathy. Are you guys talking about peripheral neuropathy? Sorry, I'm new to all this and don't always understand the different terms. S

Sorry to hear your having such a hard time. POTS is very fustrating. Everything seems to be trial and error for me. I was recently dx and meet with my neurologist for treatment on the 24th so I don't have much advise but I'm glad to hear you have a supportive husband. I also have been sick for 8 months and my husband has taken over everything. We have 3 kids 6,3,&1 and he is now the head of the household. I used to do everyhting, I was the controlling type. I had to let go of my control and hand it over to my supportive husband. How is your husband holding up? I know it can start to wear on them. I have found if I give an effort on the days I can he really appreciates it. I also support him by making sure he gets his daily workout in. He calls it his 1hr venting time. does your husband go on leave or is he with you most of the time? My husband is a Milwaukee Firefighter so he works 24hr. on 48 off. The 48off is great but the 24 on usually *****. I get alot of anxiety before his shift because I get scared I can't keep up with the kids but GOD always seems to get me through or send help my way on those days. I think there should be a website for husbands/caretakers because they need to vent to. My husband holds it all in like nothings wrong. But I'm sure being 28 and having no social life for 8 months has to be getting to him since summer is coming around again. Well I wish you luck and if your husband needs to vent or talk with someone I can give him my husbands email. If you need to vent you could also email me personally daynamartinez@aol.com Take care Dayna