DSM3KIDZ

I don't vomit but when I was researching my nausea I learned about abdominal migrianes and cvs (cyclical vomiting syndrome). It does sound alot like your episodes but you would have to do some research. One of the websites is www.cvsaonline.com If you do a search you might also find something on this topic. Good luck in your search Dayna

I'm sorry your having such a horrible time. As far as the parenting goes I completely understand. When I first got sick my kids were 6, 3 and 5 months Last year I was doing ALOT worse than right now (I hope it stays this way) but I posted alot because I was feeling like I was a horrible parent. Anyways I got alot of really good responses. If you look under my name and look at my topics their is alot of good information that might help you out. I would type more but I have a sick kid and need to rock him to sleep. You can send me a personal message anytime you need to talk. Hang in there... my heart goes out to you and your family. Dayna

I know news like that can be devistating but please still try to hold on to hope for a better future. What about a second opinion? I know from bouncing around that not all doctors have the same opinion. I know the treatment plan probally won't change but it might help your piece of mind to see if another doctor feels the same. It's just a thought. Hang in there I'm hoping the best for you and remember that we are all here for you. Dayna

My fingers, toes, legs and arms (I look like a pretzel) are crossed for you. I hope you get some relief soon. Please keep us updated. I think of you and your situation often and hope the best for you and your family. The eye issues must be scary! Hang in there. Dayna

I'm so sorry to hear about your day. I think you just have to start out with baby steps. Do a small event than as you gain more strengh you can add all day events. Still make sure you have fun! I know it's hard. I hope the best for you. Dayna

So sorry about the sex mix up. It's just there are alot of women on this board so I just assumed. Well you are a very strong MAN in dealing with all that life has dealt you. I'm glad to hear about your daughter's independance, that's awesome!!! Good luck Dayna

When I had my TTT it was for 20min. I was lying flat than put at about 60 degrees angle. I was never given any intravenous line or medication or anything. I know my Bp dropped and hr went up. Did everyone had medication administered during your TTT? Dayna

My eyes seem to be fine but my son age 2 screams when it's too sunny or if he wakes up and it's bright in our house. I'll have to check to see if his pupils are dilated. Dayna

I have to second the numb butt. dayna

Yeah this is way over my Potsy brain. Good luck on your research Dayna

I was wondering if anyone had a lumbar puncture (spinal tap) to find the etiology of their illness? I was reading that your spinal fluid will be able to show viruses and other type of illnesses. I have been told many times if they could find the underlying cause of my autonomic neuropathy this could help any furthur damage and the nerves could possibly regenerate. My fear is that they will never find the cause and things will only worsen over time. Last year I only had stomach problems (had POTS but never felt the effects) now my orthostatics are bothering me and I no longer have the tolerance I had among many other complaints. Anyways in the beginning of this illness they were going to do a spinal and we got so over loaded with all the tests we never talked about the spinal tap again. Does anyone think this might be useful or anyone get answers by doing the spinal tap? My illness hit me like a ton of bricks overnight -literally. I had a stomach virus that never went away but never had a fever or anything. I hold hopes that it could be post-viral because than my chances of recovery are better but I feel if I don't stop searching for an underlying illness than things could get worse and the nerve damage could get worse. Another post sparked my thoughts of the cause again. I just feel like I'm giving up if I sit back and except that I can go to sleep happy and healthy and wake up sick as a dog. I'm in a happier place emotionally (took me a whole year, but thanks to all the support here!!!) so I accept this I just don't want to give up on myself. Know what I mean? By stop searching I feel like I'm letting myself and family down. Hoping for a healthier future (for all of us). Dayna

Rossman, To experience all that tragedy and still be around to share your history must mean you are a very strong women. I hope you get some relief when you get more help with the adrenals. I was completely healthy one day and sick with autonomic dysfunction, POTS and Gastroparesis the next. I had a stomach virus and a very stressful few days and felt for the past year that I predisposed myself to this illness. Well after getting as low as I could possible be I realized I can no longer hold myself accountable for being sick. Yeah maybe the virus had something to do with it but the stress couldn't have caused it. I've asked my very reliable doctors if I could have caused this and they told me no many times. Anyways so I have to let myself off the hook and deal with what is and not what happened. Try not to hold yourself accountable for the things we can't control in life. Hang in there and I hope you can find a doctor that will help you get the answers and support in finding treatment. Your in my thoughts Dayna

Over this past year I have been to the ER for IV fluids due to dehydration. The I.V. fluids actually make me more symptomatic. I get really, really cold. So cold that I can't stop shaking and chattering my teeth. I get 90 times more dizziness. I can't even stand without someone helping me. I turn a horrible pale green and just feel horribly ill. Now everyone here talks about all the help they get with IV fluids. Does anyone experience what I do? I am scaried to get more IV. Is there any connection between my POTS and my reaction to IV's? Maybe it's because I get sooo cold? Just was curious about this. Thanks Dayna

No I haven't posted yet. I've just been reading the personal stories and just searching the site. I'm a browser. I'll post on it soon though. If I can walk away with anything that makes me stronger either physically, emotionally or spirituality than it's worth it for me. Thanks for checking it out. Dayna

I'm so glad you got some i.v at home. Keep fighting Dayna

Well I'm all too familiar with the nausea. It stinks!!!! I suffered for a year and 1/2 with debilitating nausea. I think maybe the combo of POTS and Gastroparesis( slow gastric emptying) give me a double whammy! Phenergan works pretty well for me. It doesn't completely eliminate it but it does make it more tolerable. For the last 3 weeks I've been on domperidone and my year and a 1/2 of nausea only stuck it's ugly head in about 3x during this 3 weeks and only for a few hours, not all day. I'm hoping the meds are working and not just a good cycle for me( has happened before a few times). If it continues to bother you I would recommend the gastric emptying study or some other test that checks your motility. But even some of those tests aren't completely accurate so make sure you find a good motility specialist. I wish I knew the connection between POTS and Nausea. If my POTS was under control would the nausea be too? I wonder? I know if I stand to long I get nauseated more easily now. I hope you find the answers you need so you can start feeling better Dayna

I just found this website when I did a search for chronic illness. Their are stories you can read and books you can buy about living with a chronic illness. There is also a magazine you can order. It's really cool and I really connected with this website. It is Christian -based. I don't know if all the reading material is or not. Check it out....you'd be happy you did. www.restministries.com Dayna

I just got the runs. About 15x each time I would take 1/2 a dose. Other than that I had no other side effects. Sorry to hear about your on going headache...it must be miserable. Hang in there. Dayna

I stopped Florinef because each day my headaches were getting worse. Eventually leading to one of my worst migraines and it's still present but to a smaller degree. I weaned off Flornief like my doc said 3days .5. Could Florinef have done some type of damage to my system that I still have the killer headache? When I called my doc of Friday she told me to take 800mg on advil, 100mg of tramadol, and 50 mg of vistril. Every 4 hours. Well I did everything except only 50 mg of tramadol (100 would make me fall. So that was all the help she gave me. Maybe I have brain damage........j/k I went 3months without migraines I hope there not moving in again Dayna

Since this illness struck Aug 2004. I have grown spirituality in ways I never dreamed of. When I was first sick I was soo angry and wondered how God could let this happen to a young mother of 3 little ones. That this illness is not only affecting my life but my kids are feeling the impact and I was hurt and bitter and resentful. But than when I was at the end of my rope, been through all the antidepressants (all made me sicker) and I was thinking about taking my own life I realized I will not teach my kids how to give up or let them think I gave up on them. Well at that point I needed to start doing some soul searching looking for inner strength to fight for the next day. That's when I asked for God to walk besides me through this journey and provide guidance and strenght through him. I still have a hard time accepting the fact I was a healthy young mother one day than a sick young mother the next. But I see alot of good that came from my illness. Through my suffering my family has found the Lord and we're in a happier place because of it. I want to feel better but it's just not my time, I still struggle with this alittle bit but I now accept that through God all things are possible. My faith gives me hope, comfort, strength, wisdom and the ability to look for the good through my personal storm. Thanks for posting this Dayna

I would want people to know that my symptoms do change on a day-to-day basis. One day I may say I feel fine and the next I'm sick. Also that my voice don't change just because I'm sick. When I answer the phone just because I'm not crying doesn't mean I'm cured. Everyone always says you sound so good.....you must be better. No, I'm just excited someone actually called me. Dayna

What a horrible story. My heart goes out to that family. An example of this is domperidone is helping tons of Gastroparesis patients when no other drugs work and the FDA is not approving it because it is so cheap they won't make money on it. How pathatic are these people. When did it become all about money and no longer about helping those in need!!! Dayna

Well I have Autonomic Neuropathy (autonomic dysfunction) which caused POTS and Gastroparesis. I basically got all these conditions over night so we are unsure of the cause. I do know that things got alittle better once I stopped my PPI. I was on it for 1 year and heard it slows digestion. I believe it does to some degree. I just started on domperidone and it seems to be helping with the nausea which was my main symptom of GP. I think if you address the autonomic issues it might help the GP. But I do know with Autonomic neuropathy, even though it might resolve on it's own, there is no cure so symptyom management is key to helping the symptoms. My GI said he thinks if we address the volume it might help with the stomach so they prescribed Florinef but due to migraines could not tolerate it. I really hope she finds answers or help because I know first hand how this illness can alter a person's life. I find alot of support at a gastroparesis at yahoogroups. I think he can access the site by going to www.G-pact.com or just duing a search. Alot of people on that site find relief from their vomiting and nausea with domperidone or reglan. If you have any other questions he can email me personally at DSM3kidz@yahoo.com Dayna

You are in my thoughts and prayers. I hope this is just your "POTS" symptoms acting up. Wishing you the best Dayna

Thanks for your replies. My migriane is still here today. I think I'll chop my head off now!!!!!!! Dayna