lifesaver

I had endometriosis but there appears to be no relation to my blood pressure problems. I have a history of tachycardia but it seems to have improved for some unknown reason, but all the other symptoms are still there.

There is a post about the Midodrine causing nipple pain somewhere on these forums. For me, that side effect did not end when I stopped taking the drug. I still have severe nipple pain when I get cold, take vasoconstrictors like phenylepinephrine, or do not wear a bra. I stopped taking the medication at the end of February and fully expected the problem to gradually wear off. It hasn't. The generic brand of Midodrine I took was manufactured by Global/Impax. They were a bit hard to get hold of, but after several calls and messages they called me back. The woman who took the info was very polite. I also filled out the online form for the FDA. That complaint report is sent to the manufacturer so they get a personal report and the official government report. Yesterday I had so much pain I just got fed up with with it. I am mad that the damage appears to be permanent and affects so many areas of my life. If we report side effects like this, hopefully other people will be able to stop the medication sooner and avoid the permanent damage. The worst thing is that the drug worked well, but the nipple pain hit a level 7 or more and that is unacceptable. I have not had the courage to contact my neurologist about it, not sure if I wait till I see him in August or call sooner. If you are reading this topic and have the painful nipple side effect, I encourage you to report it to the manufacturerer of you brand of Midodrine--their name will be on the pharmaceutical bottle. You can google the company and get the 800 number. The more of us who report side effects will make the drug safer for everyone to take Thanks for reading and taking action.

I had terrible pain in my nipple from the midodrine. Even my neuro's office said they had heard about that side effect before. It got so bad, all I could wear was a light, soft sweater and leaving the house was impossible. It has taken weeks for the pain to leave and if I get chilled, I have a lot of pain in the left one---no hardware involved. They are still overly tender, not good from my point of view. When I was on the midodrine, it looked almost like I had frostbite on that part of the "girls", probably from the vasoconstriction greatly reducing the blood supply. They were blanched completely white and very cold to the touch. I hope there is no permanent damage and eventually the residual tenderness and pain when cold will go away. I got to the point I held the midodrine pill in my hand and literally could not put it in my mouth, I couldn't stand the pain it caused anymore. Personally, I won't touch the stuff ever again. If my doctor doesn't accept this as possible, I have an alternate scenario to share with him--if guys took midodrine. Maybe that will get the message through. Hope this helps and you don't feel crazy thinking you are alone with this side effect like I did. Becky

I quit my midodrine---it caused severe nipple pain that is still with me 2 weeks later. Nurse said she had heard of this side effect before. I also had sores on my legs from the goose bumps. That is healing. It did work well for the brain fog---but I can't go anywhere if I can't wear a shirt.

Ami, Hope you are on the mend and the pain is not as bad. So very, very sorry that happened. Take care of yourself and get better. HUGS, Becky

I hope she is doing well and gets to go home and recover. Let us know when you can. Give her our love and healing thoughts, Becky

Thanks so my Brye--needed to hear something positive about this next step. I am working on a routine at home and am trying mall walking--will see what happens with that. I am just so frustrated with trying to recondition at home--it is a huge task. Appreciate the time you took to reply, Becky

Called the local hospital today about enrolling in the cardio rehab program. I would qualify for the lowest level of the program with my blood pressure and other autonomic disorder problems. It is overwhelming to try and create my own exercise program. We just don't have the classes available in my small town that my big town doc seems to think there should be. After doing exercises for a week, I know I cannot do this myself and have to find some help. There is an aquatic center but they keep the water at 90 degrees. Overheat me and I have a lot of problems. To get into the program, I have to see a cardiologist, so I figure this is a good thing--I get a second opinion from a different specialist and the necessary paperwork to start the rehab. And I get the help of PT's and other rehab professionals for $4 a session. Once I am in good enough shape to nordic walk again, I can stop the rehab and only go back when I need some extra help. Feeling enormous relief with this and hope it all works out the way I want it too. Personally, I think I need another Holter test and a stress test at the very least to see how my heart and bp respond to daily life and stress. I have a low level of chest pain that I deal with most every day and it would be nice to know its cause. Only have to wait 2 weeks. Meanwhile I do what exercises I can without hurting myself. Becky

I had orange urine when I had gallbladder disease---glad you are getting this checked out. I suggest waiting until you get all your results and see the doc running those tests before seeing another doctor. Your current doc may know exactly who and what kind of doctor to refer you to and you will most likely be seen sooner.

My doctor won't let me walk or do anything other that build up the strength in my legs and arms. I asked him if I should mall walk and he emphatically said no. I have a tendency to collapse from getting so weak and/or pass out from any aerobic exercise or activity such as shopping. I am very deconditioned and not ready to walk or swim or do any other sustained exercise. It is going to take quite a long time to get the strength back. Right now I am doing leg lifts, slowly increasing the repeats. I will add leg weights in a couple more weeks. I am doing other exercises for my arms and also some gentle stretching. Breaking my exercise up into smaller chunks helps prevent muscle fatigue--to a point. I also try to alternate arm and leg exercises the way weight lifters do. Doc K wants me to do Pilates and Balance Ball exercises--found quite a few routines on youtube and have a ball, so won't have to spend a lot of money. I can't look back on what I used to be able to do. It is frustrating and depressing to be reminded of how much I have lost. I am trying very hard to exercise everyday, even if it is just a little and move forward with the way life is for me now. Some days I move forward pretty well. Other days--well you all know. Becky

I get swelling in my face, hands, and feet---even wear my hair longer to hide the face swelling because it has changed my looks so much. I asked my doctor about it and he said--yes, swelling is very common. So fits another piece of this strange group of disorders. My feet have swollen to the point of not being able to wear my shoes--had many metabolic panels etc done and they were all normal. I do find sitting in chairs makes the leg/feet swelling much worse so I use my bed most of the time and my legs don't swell even when my face and hands do.

I do have a history of supraventricular tachycardia and years of elevated heart rate. I also have Mitral Valve Prolapse. For some reason, my heart rate has become steady in just this last year--go figure. But---I have been having severe symptoms of whatever version of dysautonomia with and without elevated heart rate for the last 3 years. My body just does things very oddly. I have been doing a lot of reading on everything and think my doc is being very reasonable in adding the big question mark at the end. I see him in a month and we will go over the treatment plan--which is the most important part right now. Diagnoses can be fine-tuned at anytime. Right now I have a very low heart rate--earlier this year my heart rate was continually elevated. Will be interesting to see where all of this leads. Becky

The bicarbonate is in the Hydralyte I used to drink---it is used by extreme athletes, olympic athletes, people with MS, mountain climbers, and hikers, among many others. You could do a search and read about it--and the ingredients. Not sure if I can post a link to it here. In 2007 I was hiking 3-8 miles a day and credit this electrolyte product with helping me function in the summer heat without dizziness or my normal heat intolerance--surprised me exceedingly Here is an article on Medicine Net that explains the role of Bicarbonate in an electrolyte solution. http://www.medicinenet.com/electrolytes/article.htm I think it all comes down to what works for each person---our needs are very individual even if we have the same illness. Becky

I searched the Internet and found this recipe on several sites--it is the easiest and lowest calorie of all the recipes and closely matches the ingredients in the commercial powder I have. You can adjust the sugar and amount of flavored drink powder to taste or use fake sugar if you prefer. Easy to make the powder and carry with you in a small container. * 2 quarts water * 1 teaspoon baking soda * 1 teaspoon salt * 7 Tablespoons sugar * 1 packet Sugar-Free Kool-Aid * 1/2 teaspoon salt substitute I would use a 1/4 packet of kool-aid for a subtle taste. You can make it up and refrigerate it a gallon at a time very easily. Can you imagine a slushy using this as the liquid in the summer? mmmm I am getting the salt substitute tomorrow. For a laugh, I found one for horses too--lol

What a great and timely topic!!!! Saw the doc today and will be starting on salt tablets with midodrine. Hoping to get a good outcome. The electrolyte tablets sound great too. I hope they have them cheap at WalMart. I am looking for a good electrolyte powder that does not have a bunch of sugar or fake sugar in it. There is one called Hydralyte, works great but is so expensive. Maybe I can find a recipe--and flavor it with powdered koolaid. Becky