Losing Weight On Midodrine & Women's Satisfaction W/ Doctors

[potsgirl]

Hello Everyone,

After a really bad spell where I was fainting almost every time I stood up, I tried Midodrine again. 2.5 mg three times per day. After three weeks, I needed to push the dose to 5 mg, three times/day. I lost 10 pounds in 20 days, and unfortunately, I need to gain some weight, not lose anymore. Has anyone else had this problem? I cannot tolerate Florinef, and my doctor at Mayo has told me to cut back to 2.5 again over the weekend to see what happens. I don't want to lose the energy the drug gives me, but the side effects are tough...no appetite, digestion issues, headache, etc.

A quick note: Just read a study (will find the particulars) that found 2/3 of women are unhappy with the treatment they receive from their doctors: feeling like they're not understood, doctor dismissive, not spending enough time with them. It appears we're not the only ones!

[jenglynn]

Hi PotsGirl,

I had the same issue- very bad syncope- almost literally every time I stood up. I started at your your dose of 2.5 and currently take 15 mg 3x a day. I had lost a lot of weight since taking it also. I am 5'3 and weigh 104 pounds. I know that doesn't sound horribly underweight but I feel I look and feel best at 125-130. I'm pretty "curvy" I guess and really large chested which DO NOT get smaller as I lose weight, unfortunately!!!! When I first started getting this flare I was 145 so definitely overweight- but but fit and firm I think because I worked out a lot and it was mainly muscle. I would say in the last month my weight has stayed stable. I wonder if that side effect wears off after time? Maybe the severe loss of appetite wears off? I have been taking in since September- at 15mg since Nov. I don't really get any of the other effects you've described except I get the chills, goosebumps feeling. I could get headaches from it, though, but I cant think of a time I dont have a headache but I've attributed those to my migraines or concussions. It has helped my syncope quite a lot but I also don't walk. Have not been able to since Nov. because of the serious head injuries I was getting (one WITH a helmet). But it decreased my syncope by at least 50-60%. Even crawling, I will faint.

The loss of appetite I experienced was severe. Just the thought of food made me want to gag. Having had so many concussions, I stopped Florinef because the headaches and felt like my head was in a pressure vice. I know some people who haven't been able to tolerate Midodrine do take Mestonin. I tried it was not able to tolerate it.. You said the Midodrine gives you energy.. How does affect your syncope? It is pretty successful.?

[jenglynn]

Oh, and I'm surprised in a way but NOT surprised to hear about the results of that survey. 2/3 is such a huge number. My patience level and tolerance with doctors is so paper thin right now. I'm so tired of getting treated as if I am wasting their time. I called my neurologist last week about ANOTHER concussion (number11) at the major facility I go to and won't use names. It took him 4 days to finally call me back. I had gone through IVIg rejection in January. My labs were a mess. Every organ system was affected and my blood as well (hemoglobin, hematocrit, RBC, WBC, ferritin) They are all mostly normal now. But my kidneys are still abnormal. I'm also having major bladder issues with a bladder infection I can't get rid of. I'm sure, kidney related. I was supposed to see the neuro in March 2 weeks ago and he checked my labs and said we would have to wait until kidneys are normal before we can re-check my autonomic system. I asked what if they aren't normal by my next appt? He tells me "we reschedule" and just waiting until the IVIG is out of your system. Okkkkaaaaaaayyyyyy..... Why don't we check my kidneys and see what the problem is and be PRO active? No, we just wait. Meanwhile, I'm still in the same boat I was when I arrived. When he FINALLY called me back about my last concussion I could tell he was irritated I was wasting his time because he told me he had already explained everything. Me, being me had to say "Well, you must keep in mind I have some significant cognitive dysfunction due to now 11 concussions- short term memory is one.". So I was joking with him (I thought clearly because I was laughing) and told him I was submitting my case to Mystery Diagnosis, OMG! He freaked out! Lost yelling at me... "You have three VERY complicated and rare illnesses plus other health issues and they HAVE been diagnosed so there IS NO mystery! We just don't know how to treat it successfully at this time." WOW! Defensive much? I'd rather it be the other way around! Treat it- who cares what it's called. I feel like another file in their precious research study and not as a real person really suffering. I probably won't even know my own name in 10 years after 11 concussions. Who knows. But that's not ther concern. Their concern is the research they are doing on Autoimune Disease and Autonomic Function. Great! I'm thrilled- but they won't look at the big picture and have such tunnel vision. It is frustrating and I find this with practically every doctor I see.

I just want A life back- I've accepted I'm not getting MINE back.... Anything would be better than this misery.

Jen