TaraMc9

I was nervous to take it at first too, but I’ve been on 10mg 3x/day for about 15 years now with no problems. I’m on a beta blocker which lowers my bp, so I don’t have any issues with lying down. When I started taking it, I monitored my bp regularly just to be safe. I can’t say that it helped my fatigue, but it helps my other POTS symptoms a lot. And the only time that I stopped taking it was for a clinical trial at Vanderbilt. I didn’t have to taper off & there were no withdrawal symptoms. Good luck!

Pretty much what everyone else said. The longer I stand, the more purple my feet get. Sometimes my legs will feel kind of heavy & achy or my feet will get a bit swollen, but not always.

I got a Fitbit Charge 2 for Christmas. I love it!! ? So far, it's been very accurate with my heart rate when compared to my bp monitor. It usually stays fully charged for about 5 days & when the battery is low, I just plug it into my computer overnight, & it's ready to go the next morning. Also, it syncs using Bluetooth & only takes about 30 seconds, at most. And personally, I've found it reduces my anxiety. There have been times that I thought my heart was racing & while my hr was elevated, it wasn't as high as I thought. It also helps me to gage my limits better. If I get light-headed, I might try to push through it, but if I see my hr going up & up, I know I better sit down before I fall down! Lol Although like Katybug said, it always thinks I'm in fat-burning mode! ?

I can't function without my Midodrine. My bp is all over the place too, so my doctor just has me track it & adjust my dose up & down. I had some scalp tingling for the first few weeks, but it went away. I've been on 10mg 3x/day for about 15 years with no problems. The other thing that I would suggest is that if it doesn't work for you, try a different generic. Most people do well on the Mylan Midodrine, but it didn't work at all for me. I switched to a different brand of generic & it worked great. Good luck!!

Love the idea! I tried a few of the support groups on Facebook, but they weren't for me. It would be nice to have an actual (sort of) face to face conversation with people who are facing similar challenges. I have wonderful friends, but they can't really understand a lot of what I go through, especially since I look healthy.

Glad that you had a positive experience at Stanford. I get episodes of severe vertigo where I can't get out of bed because I'm so dizzy & the spinning makes me nauseous. I can distinguish it from the dizziness caused by my POTS by the fact that when I lay flat, it doesn't help. I have no idea what sets it off & I usually just stay in bed until it goes away, which is anywhere from a few hours to a few days. Hope you find some answers & your girls get relief. Good luck!

I'm diagnosed with POTS. On the beta blocker, my heart rate is usually in the 70s when sitting & the 90s when standing. If I'm active at all, it's over 100. Before I was on the beta blocker, it was in the 80's when sitting & over 150 when standing.

That's interesting because I am the exact opposite. If I move to fast, I get really lightheaded, esp in the morning. I have to do everything slow, which is really annoying when I'm in a hurry. I hope you continue to make progress. Good luck!

Thank you so much, everyone!! I really appreciate you taking the time to answer. And Sarah, I'm glad to hear that it works well for you. Keeping my fingers crossed!!

Are you finding that it's become increasingly harder to obtain? I was taking the Global brand after the Mylan didn't work for me, but the pharmacy said that it's no longer available. They switched me to Sandoz, but my blood pressure has been fluctuating between really low & really high since starting it. After doing some research, I asked if they could order the Apotex brand & was told that's not available either. I'm going to try the Midodrine from Upshire. Does anyone have experience with this particular brand? I am beyond frustrated. Thanks!!

I'm in the same boat. The Mylan didn't work for me at all, so I switched to Global, which was great, but now I need to find a new brand to try. I'm supposed to start on the Sandoz brand next week. Fingers crossed!!

I was wondering what brand of Midodrine people have had success with. When I was put on the Mylan brand, I completely relapsed & could barely get out of bed. It took 2 years to figure out that was the problem. I am now taking the Global Pharmaceutical brand, which works great for me. Unfortunately, this month I was informed by CVS that it was back ordered. Luckily, I tracked some down at another pharmacy. In the meantime, I wrote to the manufacturer about the issue & today, I received this response: "Please be advised that we are currently in an extended out-of-stock position on all strengths of the Midodrine HCl tablets. Unfortunately, there is no release date available at this time. When production is underway and our inventories have been replenished, we will begin shipping through the wholesale channels as soon as possible. Please have your pharmacy check with the wholesaler within the next few months to see if the product is available. Thanks for your understanding and continued support for our products." I have enough medication to get me through this month, but I have no idea what I'll do next month. Is anyone on a brand that they feel works really well? After my experience with Mylan, I'm nervous to try another brand, as I've been doing fairly well recently, but I guess I have no choice. Any suggestions would be greatly appreciated. Thanks so much!!

I'm currently having the same issue with Midodrine being back-ordered. I usually get a partial & have to go back for the rest, but CVS has been trying to get it in for a week & hasn't been able to. I'm going to have to call around to other pharmacies because I'm out of pills. I told them that I can barely get out of bed without this medication, but they just said they'd keep trying to order it. I would think they would offer to help me track it down somewhere.

My pharmacy special orders the Global Pharmaceutical brand for me. For some reason, the Mylan brand didn't work for me. I wish these generics were all the same. It would be so much easier!!

Thanks for responding. I think the decrease in fatigue probably was from the Lexapro leaving my system. I thought it may take time for the Prozac to build up, but I got nervous when my bp started bottoming out. I'll definitely give it some time & see what happens. Thanks!!

Hi, I was wondering if anyone has experience with switching to Prozac to treat their POTS. I've been on Lexapro for years. It worked pretty well for my POTS, but caused severe fatigue. I recently switched to Prozac because I was told it's more stimulating. I've only been on the Prozac for a week. At first, it was great. I noticed a huge difference in my fatigue level, but the past few days, my POTS symptoms have gotten a lot worse. I don't know if my body is just adjusting to the change in meds & I should wait it out or if I should switch back to the Lexapro. Any suggestions would be greatly appreciated. Thanks!!

My POTS symptoms started after I was kicked in the head by one of my students. (I'm a Special Ed teacher) She kicked me right between the eyes. I first passed out a week to the day after I got kicked.

Hi Sarah, When I relapsed, I didn't even think about my change in meds from brand to generic. Dr. Grubb was on medical leave at the time, so I went through a lot of different doctors, tests, and trial & error to try to get back on my feet. When I saw Dr. Grubb, the first question that he asked me was if I was on brand or generic Proamatine. When I said that I was switched to the generic, he told me that was why I had relapsed & that the generic was, in his exact words, "garbage". After he switched me back, I was able to get back to my normal life within a few weeks. Of course, that was about 5 years ago, so maybe there are new generics since then that work better. Unfortunately, I have no idea which one I was given. I'm very relieved that there seem to be at least some generics that are effective. I have not heard back from Shire, but if I do, I will let everyone know what they tell me.

Thanks so much for your responses!! I'm glad there are some generics that seem to work. The email that I received from Shire was such a shock. I did email them back asking for more info on Proamatine being discontinued. I'll let all of you know if I hear anything back from them. Thanks again for your help!!

Hi Everyone, I have read many posts on the forum, but this is the first time that I'm posting anything. I was diagnosed with POTS almost 10 years ago. I was basically bedridden until I saw Dr. Grubb. Since that time, I have been on a combo of meds, including Proamatine. I contacted Shire Inc, the manufacturer, yesterday about possible co-pay assistance. The message that I received back was "Hi Tara, Shire is no longer manufacturing Proamatine and therefore cannot offer co-pay assistance." After that, my co-pay was the last thing on my mind! Does anyone know if they are stopping the manufacturing of Proamatine completely or just until things with the FDA are cleared up? I was switched to a generic 5 years ago by my insurance company and completely relapsed. When I finally got into Dr. Grubb, he switched me back to the Proamatine brand and said the generic was "garbage". I am completely freaking out over the possibility of ending up back where I was, unable to work or function. If anyone has any information on this topic, I would really appreciate it. Thanks so much!!!!

Oh goodness, I hope not!! I just started seeing Dr. Goodkin about 6 months ago because I was looking for a POTS doctor in PA. I didn't get any kind of message about him not seeing POTS patients anymore. I have an appt scheduled on May 28th. I really hope he's still seeing POTS patients because it's so difficult to find a caring, knowledgeable doctor. Thanks for the update. Good luck!!