sally

Hello, my oldest daughter had a very bad problem with frequent urination, most times every 20/30 minutes, and no one at the time could tell us why, even put the poor child through a cysto (per docs request) and found nothing. docs tried her on ditropan which really didn't help much. Traveling was terrible for her. Wasn't until after being dx with a form of dysautonomia and put on midodrine that we found the cure! Once she started her treatment with midodrine and she keeps her blood pressure somewhat level, the (very) frequent urination problem just ended. As well as her horrible chronic nausea problem suddenly ended which was at the time a bigger problem for her,she suffered from for about 5 years with no answers as to why either. I read that this problem can cause urination problems as well. Good luck

Hi, I remember (long time ago!) before the thought of a diagnosis with orthostatic problems (docs didn't know anything about this problem back then) Anyway, during both my pregnancies I felt great and finally felt like a normal person, no dizziness, no weakness, no fatigue...other than the typical pregnancy tiredness but alas after babies were born approx 3 weeks after, the symptoms returned and usually worse than before for a while until things leveled out to the normal crappy everyday feeling. I never understood why this would happen because I would always hear people complain about feeling sick during pregnancy and I felt like a new person. From what I read on it now, I guess it's from the extra blood volume and fluid retention & vitamins etc. I didn't get a diagnoses for my health problems until my girls started displaying the same symptoms and were diagnosed.

Hi Danelle, I think when a person works in the health field, it's a common thing to be more nervous about medications and medical procedures....it's because you know what can happen more than the average person. (remember that old saying that doctors make the worst patients). In our family we use Midodrine everyday and haven't noticed any real side effects that would keep us from using it. The only thing I noticed is a tingling feeling (like chills) that last for about a half hour after it gets into your system due to the autonomic system adjusting also a tiny bit of spaciness that tends to occur but hey who could tell the difference from the regular spaciness that happens on a everyday basis, right? The chills went away totally after using Midodrine for more than a few days. My daughter took Florinef and she noticed it made her nauseous for some reason and could not take it. Anyway, it's been a big help for us and we also have the tachy that occurs most of the time...I can be standing perfectly still and have a heartrate up to 139, especially in the AM when my blood pressure is lower. My normal heartrate is about 80 lying down. I've noticed that when I take the midodrine, my heart rate is lowered as well. Good luck and hope you feel better soonl

In our family, our orthostatic problems were inherited and both my girls have it from me. Although I went most of my entire life not knowing what the heck is wrong. We also have Ehlers Danlos Syndrome which is a genetic problem that both girls inherited. I think there are different ways to get this problem from viruses to genetics and it varies from what I've read on it. They didn't start showing real signs of the orthostatic problems until early teen years and now we all take midodrine to help maintain things after tilt table testing revealed what the problem was. Good luck and hope she feels better soon

Hi again, nevermind previous reply, I just came across information on it.....I guess the test is called thermoregulatory sweat test which is different than a regular sweat test used for CF. I understand now......good luck on it, sounds very interesting.

Hi, Just curious....I hope you don't mind me asking this but why would your doctor order a sweat test? This test is used to diagnose Cystic Fibrosis. There are numerous websites stating why this test is needed and what to expect, how it is performed and have alot of information about it, so you know what to expect if your curious about it. Good luck on your tilt table test and best wishes and hope you find answers to feel better soon.

Hi Just wanted to pop in an say cute website and lovely flowers. I tried to sign your guestbook but was unable to do so for some reason. maybe a computer thing on my side or something. Anyway great gardening! and best wishes toyou. My Webpage

Hi, Just wanted to say we take Midodrine as well and found that it was the miracle drug for our family, (there are 3 of us who take it). It is the only thing that helps us function somewhat normally and able to think more clearly. I just wish I'd had it many years ago. Any side effects this drug gave us, which were very small, is well worth the positive outcome for us. We only noticed the chills in the beginning and haven't had any additional side effects as yet, it was only temporary as well as the drugs life span in the system is 4 hours. I think some people take this medication even before they get out of bed in the morning to help. Also if you are having more of a problem with your blood pressure after eating especially in the AM, (after checking with your doc first) consider your carb intake. After eating large meals or alot of carbs, it can cause in some people with this problem to get more giddy, brain fog, lowered blood pressure even more so due to the extra blood flow to the intestines. I usually do better after eating less carbs in the morning hours and then have what I want later on in the day. Good luck and hang in there.

Hi Carmen, Sorry to hear you feeling so badly, I'm new this forum as well but felt I had to write you. I can relate to what you are feeling as well as many on here I'm sure. It is a frustrating journey to find out what exactly is wrong and then try to fix the problem so a person can function somewhat normally (whatever that is). We have orthostatic intolerance problems in our family as well as Ehlers Danlos Syndrome and both can make you feel terrible. Hopefully once you get your tilt table test they can figure out which medication will make you feel better so you can get through your day teaching. We also experience the increased heart rate to the point of breathlessness and having to lay down frequently. I've dealt with this almost my whole life feeling like this and it wasn't until my daughter started displaying the same symptoms that we were lucky to finally find the right doctor to find out why. Doctors in my past didn't have a clue what was the matter with me, so I finally gave up trying to figure it out and adjusted my lifestyle around my body which means I work only a few days a week and slept alot. We don't plan any activity in the morning hours only in the evening when I feel better. We now (after diagnosed) are taking a medication called midodrine which helps us function and have more energy, I only take it in the AM (which is my worst) but our girls take it all throughout the day (3x) just to feel normal. We had the TTT to find out and I am so glad we did it even though it was not a pleasant test, it is necessary. Another aspect of this is (in some people) is what you are eating in the morning hours may make the symptoms worse. I had to cut out all carbs & sugars in the morning and eat just protein, just until I leveled out. The carbs were causing too much digestion to occur which pulls blood into your intestines and away from an already low source. I noticed a big difference in symptoms when I changed my eating habits in the AM as well (although sometimes I cheat with this but usually pay dearly for it) Pancakes for example are a killer for me in the morning, it messes with the blood pressure and blood sugar at the same time. I would be ready for bed and had trouble functioning about an hour after eating it. But check with your doctor on this and keep a record of what you are eating and compared to when you start noticing symptoms. I don't think this happens to everyone but for me it causes an increase in my symptoms. Good luck and I hope you feel better soon.

I'm not sure where you are located but did you fill out for the family medical leave act paperwork before you left? If not, I would suggest doing that first. Does your company have short term disability? If you are paying into that, first thing you will need to do is get documentation from a physician stating you are unable to work at this present time. Short term after sick time and PTO is used up, usually covers things until that runs into long term disability. Sometimes if you feeling well enough, usually a company (with a physicians permission) will let you work part time basis such as 4 or 6 hours a day for so many days a week. It all depends on your health and the doctors documentation. I would suggest seeing your company's human resources and employee health dept to find out more about your rights within the company itself. Good luck

Midodrine was a miracle drug for our family. It's like night and day when we started it. It gave life back both my daughters. My oldest has had chronic nausea problems for about 4 or 5 years, no one could figure out what was causing this and she just couldn't eat much when she was like this, They both have EDS and we didn't know if it was that causing it or what. No one tied in the low blood pressure and severe nausea until she started taking Midodrine and it finally stopped after starting the meds. There are days that she will have break thru sick feeling when her BP is really low that day but overall the improvement was incredible. The only side effect I noticed from it, is a weird chill goosebump feeling that runs along the body into the scalp but it's a small price to pay to feel better I think. My oldest feels this as well but not my youngest, she doesn't have any side effects only improvements. Good luck and hope it helps you as well as it helped us.

thanks to all for your replies. I was curious on this subject because not many of the doctors she's seen is aware of the problem associated with blood pressure. and we went through alot of doctors before finding out about this problem. It really helps comparing notes with others with this problem as we always feel like such oddballs among healthy people who don't understand why feel so badly. Thanks again

hello to everyone, I'm new to this forum. My daughters including myself have orthostatic intolerance problems. My daughters also have been dx'd with Ehlers danlos along with their dx of NMH. I was glad to find this forum, it answers alot of questions that come up with this problem. My oldest has chronic nausea that has gotten better since starting midodrine but still has it flare up. Any one else out there with terrible nausea from their blood pressure problem? any replies much appreciated and thank you for your time.