Faintinggoat

Has anyone ever experienced this: I had about a 20 second period where I saw the color yellow as blue and then it ended and I haven't had it since, and have never had this experience before. I have had visual changes with my symptoms before, but those were things like spots in the vision. I am on 20mg of Propranolol 3 times a day and diagnosed with Hypovolemic POTS. Could one of those be causing it? I am going to try to get into my physician tomorrow morning, but wanted to see if anyone else has experienced this in the interim. Thanks, Fainting Goat.

Welcome to the forum. Some of them sound familiar to me. I too have lightheadedness, tachycardia, fatigue, brain fog, memory issues, chest discomfort, weakness, as well as headaches, fainting, and spots in my vision. A lot of us have had very similar experiences. My cardiologist told me that I was just aware of my own heartbeat, and had a non-problematic increase pulse rate. He told me that I should talk to my therapist aboutit. So he didn't say directly it was all in my head, but that's exactly what he was saying. It does in fact get frustrating because you know these symptoms are real, you have to live with them daily, and yet no one wants to take you seriously, just because they can't see it. Have you talked to your primary physician about seeing a specialists? Or getting a tilt? Sending good vibes your way! Fainting Goat

I'm not sure about anyone else, but my doctor doesn't want to start me on Florinef because my BP is generally normalish 120/70 ish I have the same issue. I had a hemodynamic tilt done, and they found that my blood and plasma volume decreases by half when I stand/ am having symptoms, but my blood pressure stays relatively normal. Florinef is great for increase fluid retention, however, it does have a habit of raising the blood pressure because of the sodium retention which isn't nec the best thing if you have normal BP. However, I think by most doctors standards you would be considered hypotensive when your diastolic is under 60 (even if your systolic is normal). I can see why you think that you might have low blood volume. My specialist told me that downing the 500ml quickly would do that (e.g., stabilize heart rate, decrease symptoms) with my type of POTS (hypovolemic POTS) because it quickly restores blood volume. He told me that should be one of my first treatments when I am having a bad symptoms day. Fainting Goat

Just to repeat what everyone else has said, its pretty normal to have these kind of reactions to any new medication, especially beta blockers. Additionally, our bodies have weird responses to medications sometimes. I've definitely experienced this with my last beta blocker attempt. Like Chaos said, it can be a bit trial and error, but I think you are on the right track . Best wishes to you, and I will be sending good vibes your way that your body will adjust soon, and this will be the right med for you!

Awh, I am glad that you were able to find this site, and get help from it. I Hope that your Thanksgiving has been a great one!

Lynnie, that is exactly what was happening to me on Coreg. I was having very weird symptoms, I was EXTREMELY exhausted/sleeping all the time, and my blood pressure was down to 90/50 (generally my BP is actually quite normal). I hope that if you switch to atenalol that it is helpful for you!

Thank you all for your responses. I know knew that there have been lots of people who have had a lot of success and a lot of failures with Propranolol. I am still keeping my fingers crossed! Rosey, one of the reasons we started with Coreg is because apparently it has less of an affect on the lungs. I have persistent asthma, so that has been a big worry with beta blockers. I will be sure to keep an eye on my lungs. I just took my last dose of the day,

bigskyfam, that's right! I knew I read a post about it recently, but for the l couldn't for the life of me remember who posted or what the post was about. Keep us updated on how things are going for you! I hope that you can find something that works for you!

yup we're starting at 20mg/3X daily.

Thanks for the responses. The reaction you had to propranolol, Katybug, is pretty much the reaction that I had to coreg. I had some more tolerance to stairs and walking (e.g., It didn't always feel like my heart was going to pound right out of my chest), but I definitely have been a zombie since about a week after I started it. Sleeping all the time, zombieish when I am awake, and I was on the lowest dose twice a day. Chaos, I will keep nadalol in mind if I have a similar response, and keep it in my pocket to bring up with my doctor. I hope that I have some more success on this med. As I mentioned above, I was having some good responses to the Coreg, but it just wasn't enough to justify the bad side effects I had.

I have been kind of MIA off and on this past week or so. I was put on coreg, and I saw some really promising effects of it at first, but after that it just went down hill. I've been more dizzy, more tired and sleeping all the time. So my doctor decided to switch me to propranolol. I know there have been other posts about it in the past, but can anyone chim in on if they have taken propranolol and what it was like for them. Fainting Goat

I didn't feel mine, but I was completely aware. I had stomach ulcers, and he was talking to me in the room before hand and asking what I wanted to go to school for and what not. When he still had the camera in he said "congratulations, you have stomach ulcers. I really know my s*** don't I?" I looked at him awkwardly, and he said "don't worry, you won't remember I said that." When I followed up with him the next week he was talking to me and right before he walked out of the room, I said "thanks you really know your s***." He turned so red and said I wasn't suppose to remember that.

This is just my experience, and it may well have been different for other people. However, I was put on Zoloft way back when I started having symptoms of POTS, and it made me so much worse. I was also put on BuSpar, and had the same reaction. I don't want to scare you, but wanted to share my experience. A lot of us have different tolerances, or lack there of, and reactions to medications, so its hard to know exactly how you will react to it. It may be the best medicine there is for you. SSRIs and what not have helped a lot of people, and I'm not really sure why. The best response I could get from my doctor was that we don't really know what is going on in the brain of people with Autonomic Dysfunctions so we don't know how the SSRIs are helping. But she did explain to me that they do help a lot of people. Probably because they impact the way the brain is working, and with dysautonomias there is something wrong with how it is working.

I am so sorry that your experience was that bad. I hope that you are at home recovering from it and that you soon feel better! I had one done when I was a teen, and I had conscious sedation. I honestly thought the same thing, that they just gave it to me for anxiety and to relax me. I had no idea it was that bad! Did they not explain to you what the downsides of not being sedated were? Take care of yourself! Best Wishes, Fainting Goat

they state that autonomic testing is "considered investigational and not medically necessary for all indications"

I live in Central PA.

I'm a big gamer too. And they are great releases when you have stressful stuff going on in your life. My favorite types of games are MMOs and sandbox games. These are both game types that generally have me playing for hours at a time, and I think that (at least for me) the symptoms I get come from inaction. My theory is that if I don't move and just sit in one place for a long period of time, my blood pools.

I don't really see a differences with the heart rate with them (or the beta blockers for that matter), but the stockings and binder have decreased the frequency of some of my symptoms (like syncope) since I started using them. Like Chaos said, it might be good to search the forums for ideas on compression stockings. There are many different brands, and many different opinions on the different brands.

I was told by neuro that its good to start on a lower strength and work your way up to the higher strengths. Also, I was told that the thigh high are more effective than knee high. Did your dr also mention an abdominal binder? My doctor has me wearing a binder to help with pooling in the abdomen. Best wishes, hope they help you!

lol bigskyfam, I completely understand that. Driving to my doctors across town generally takes most of the energy out of me, let along a trip states away.

Your situation sounds pretty similar to mine. I am a senior in college. I took a semester off when I started having POTS problems. Like you, I am back now but everything is from home. It has certainly been very hard to balance things. I decided when I came back that I was going to take a smaller course load than I was used to which helped a lot. Also, I make sure I balance the more time intensive courses (e.g., science, writing, etc) with less time intensive courses (e.g., art -- I've learned that my uni offers art classes online). POTS is not great at sharing the spotlight with things like school. For me, however, the most important thing has been communication with my professors. I made sure that they all know what is going on because there are times when I have to be out of town during exams, or times where I am in the hospital or whatever. have you considered asking the prof if you could take the exam in there office or something to that effect? It's still stressful, but I find it to be a bit more relieving to know that if I do have symptoms or problems that I wont be around tons of other people, and that I will be in a situation where I can talk to the professor freely. If your professors aren't so understanding most unis have people in place to advocate for their students who are disabled, and/or sick.