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lifesaver

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Posts posted by lifesaver

  1. 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.

  2. 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

  3. 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

  4. 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

  5. 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

  6. 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.

  7. 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

  8. 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

  9. 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

  10. 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

  11. You all are so sweet---bless your generosity

    I am curious about getting the hose for men. I am 5'6, but my legs are quite long. They don't make these things in tall, pout. Great idea getting men's stockings so they stay up better.

    BTW, I have 2, 6 foot tall girls, beautiful. Somehow my youngest finds the cutest shoes in size 11--mostly flats, mules, and sandals. Will ask her where she gets them. Wish I had bigger feet to borrow from her--lol

    I wonder how tall everyone here is--the taller you are is it harder for the blood to get back up those leg veins?

    Becky

  12. I saw the neuro who specializes in dysautonomic disorders today. He was kind but best of all, understood the long, painful journey it took to finally get he diagnosis.

    He told me I have POTS, but with a question mark because I don't have the elevated heart rate when standing. My blood pressure plummets like a rock he said.

    I now have a treatment plan and see him in a month

    • midodrine, 3 doses a day at 8, 12, 4 or similar spacing, take it before getting out of bed
    • salt everything and take salt tablets
    • compression stockings--I wear them and they help a lot
    • Begin some basic pilates and very light weights. I am not allowed to walk until I get in better condition. Have to start very very slow due to my level of deconditioning.
    • Drink fluids-2
      and anything else I forgot-left the list in the car.

    He also put me on a dose of Topomax as a migraine prophylactic, said they are not being treated properly. But I start that 2 weeks after taking the midodrine.

    Going through my history--his resident took the history and dr. K went over it in detail--we discovered I have had symptoms of POTS at least since high school. He said mine got worse with every upper respiratory infection I had. Teaching really did destroy my health--kids bring so many germs to school. Strep throat and ear infections seem to have done me in. I wasn't lazy as a kid--I really did need to rest a lot.

    Got a lot of answers today---heaving a sigh of relief. The hard work is beginning, but the search for a diagnosis is over. I can cancel the MRI and QST scheduled next week--fewer medical bills!!

  13. Dani,

    My neuro specializes in dysautonomia and he more than understood the years and multiple doctors it took to get a diagnosis. I will be seeing him, not a cardiologist, at least for now, for all my treatment. He laid out a very good treatment plan today and really gave me hope that my symptoms can be treated and not be as bad as they are now.

    I suggest you check and find the neuro in your area with the most experience treating POTS patients and ask to be referred to that doctor. Call their office and talk to them too.

    Best wishes for the pregnancy and finding good care. When a doctor gives up like that, it is not you, the doctor's ability to treat you has reached an end.

    Becky

  14. Thanks so much everyone--have tears running down my face reading your responses.

    Anymore I don't know how much it helps knowing other people are going through the same thing---I am angry that anyone is going through this.

    I hope the neuro I see next week will be able to give me some information on living with this ad how to adjust mentally to all the changes. Maybe the tests on the 27th will give the docs a cause for the dysautonomia and neuropathy and there will be a treatment. But then, the treatment could be as bad as the disease.

    Had a tough session with my therapist this week--very difficult talking about this when there seem to be no real answers right now. My vision has gotten worse. Driving back from the appt I was seeing multiples of traffic lights--green was the worst.

    I think the vaginal infection is back and I might have a throat or sinus infection--if so, that would explain some of the feeling so horrible.

    HUGS and thank you so very much

  15. I haven't been on much in the last week---instead everything in my life has come to a dead stop for over a week. I am not sure why.

    I have been very tired and week and had no motivation to do anything. All I have done is spend time on the computer. No laundry, no cooking, no shopping, nothing. It started after I saw the neurologist on the 28th and got the results of my tests. Except for the blood vessel MRA, every other test had abnormal findings.

    It was only in July of 09 that any doctor started taking me seriously. I spent 2 years being told it was in my head, anxiety, fibro, migraines, and so on.

    I am just tired, fatigued, exhausted--somedays to the point of physical weakness. Maybe it is finally having a diagnosis and being believed. Maybe it is starting to understand the impact of the diagnosis, maybe it is both and maybe it is nothing. I just do not know. Part of me is afraid to go out in public and risk collapsing or fainting or falling and being embarrassed. At 55, I feel as though I aged 15 years in the last 3.

    I am not depressed, that I can tell. Just worn out. Will be talking about this with my therapist tomorrow. I hope this dead stop ends soon, I don't like it and would really like to be doing something.

    Becky

  16. I have neuropathy---the testing for it is not stressful at all.

    I get vibrations in my feet and legs, feeling like wires being stuck in my toes, twitching in my leg muscles, ache, agitation, restless feeling are other manifestations of the neuropathy. Sometimes I have to wiggle my feet to remind myself they are there--very odd feeling.

    I did read that there are 3 types of neuropathy----Sensory, motor, and autonomic. The conclusion is that some types of nerve damage cause one type of autonomic disorder.

    It would be good to talk to a neuro if your doc thinks you need to---many, many things can cause neuropathy and finding the cause can lead to treatment.

    Becky

  17. My husband is no longer interested in relations---long story. But when I was active, sex made me feel better---it just took a long time till I could move my legs and get on my feet--I was weak as a kitten. Think all the blood went to--well, you know. lol

    I find some occasional self-help to be a good thing for me, all those endorphins released do a lot for me and I have a day or so where I feel better.

    Becky

  18. I saw my neurologist today. It went VERY well. I have not had a dud in all the docs I have seen at the medical school yet. If you are in St. Louis, pm me for names.

    She is wonderful and will follow me every 6 months for the Trigeminal Neuralgia pain and related headaches.

    I have sensory neuropathy and quite possible autonomic neuropathy, cause yet unknown. She ordered another MRI of my brain--recommended by the doctor who did my EMG/NCV and Blink Test--both had abnormalities. Some new blood tests will be ordered and an appointment set up with Dr. K who did my tilt test. I will also have Quantitative Sensory Testing--something I know nothing about.

    The goal right now is to find the cause of what is wrong with me. It has been established that there really is something wrong, now they are looking for answers.

    I feel comfortable with the outcome of this visit, a good thing.

    Becky

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