L4UR3N

What was your dosage of Methyldopa? Did it cause any other symptoms? I am a bit afraid to try it b/c of all the potential side effects. I know that a lot of people take Clonidine, and it is a relatively "safe" drug. I was thinking of asking my doctor to prescribe Clonidine instead, but I'm sure he must have had a reason to try Methyldopa first........

Hi all! It has been a looong time since I have posted. Life has been busy and difficult....just trying to hang in there and do what I need to do. I finally got in with a great autonomic specialist who did tons of testing that I had not previously had before. Turns out most of it as abnormal--not that I'm surprised. He is sending me to a geneticist to evaluate a few things, so it will be interesting to see what they find. He believes that I have HSAN type 1. It does make sense given my symptoms, but I have to wonder if I have two separate autonomic disorders, or if it is just all part of the same big ugly picture? He prescribed Methyldopa 250mg bid and told me that "we have to get your blood pressure and heart rate under control before other things start going wrong". Ummmmm No kidding . lol My questions is whether Methyldopa or Clonidine has proven to be more effective for Hyperadrenergic POTS? Anyone have any experience with either of these drugs??

It's called edema and it can happen for a variety of reasons. Some people have venous insufficiency (which could be contributing to your POTS), others have fluid overload. If you are not taking any medications to increase your volume, or eating a ton of salt, then I would suspect that you have some venous insufficiency. Unfortunately this can lead to other problems like ulcers (which I have developed). Elevating your legs or wearing compression stockings can help get the fluid out of your legs and back into your circulation where you need it!! ...That being said... it doesn't solve everything

I have been using one too! It is so amazing! I never knew how strength training was supposed to feel until I started using this. In the past, every time I would do strength training my reason for becoming fatigued was not due to my muscles, but to my heart. Now I can actually fatigue my muscles and get some strength!!!! The first time I used it, I actually overdid it without realizing it because I was waiting for a cue from my heart, so I just kept on exercising. The next day I was very sore and quickly realized that this was the PERFECT exercise!!! All of the exercises are done either sitting or lying down, and it's actually FUN to use. I do not get any tachycardia which was a true first for me, although I do get a little sweaty. After using it I feel like I have energy which is also incredible! I definitely recommend it!!!

I'm still looking for the information in this link too

I took Klonopin a few times to try it out. I did notice a release of tension (best way I can describe it) in my chest area. It almost felt like the feeling you get after you let out a big sigh--only multiplied x 100. It also made me less inhibited and completely relieved my anxiety when giving a public speech! Unfortunately it also made me very dizzy (I literally could not turn my head or look at anything without nearly falling over), and did not help my heart rate at all.

I did a search and could not find a topic on this, so hopefully it was not posted before. Has anyone watched this video? It's beauty queen Kelly Ruggiero, speaking out about her daughters stuggles with dysautonomia: http://www.redorbit.com/news/video/top_news/2/beauty_queen_mom_raises_awareness_of_dysautonomia/34607/?src=mrss While it's great that she is promoting awareness, why on earth doesnt it say what helped her daughters?!?!?!

Definitely see a doctor...

Thanks for all the info! I am buying one today so it will get here on time. Hopefully I picked a good one

Thanks for your reply . It's so hard to know what to do sometimes. I know that I need a surgery, but I just dont know that laparoscopy is the way to go because of all the additional risk factors involved with the surgery. My doctor is of course promoting a laparoscopy because he is viewing it from the standpoint of trying to make the endometriosis better (and if they cut you open you it can actually make it worse in the long run because of the additional adhesions), but I am not convinced. I've seen too many laparoscopy complications and I dont want to end up a statistic.

I was only ever tested as acidic once, all the other times I was at the low end of normal. I would definitely like to try more natural things to help with the acid!! What kinds of foods do they say to eat or avoid? I know that I cant eat spicy foods anymore at all ...used to really love them. I definitely hypoventilate too. Apparently I always have! My mom said when I was a newborn and about to go home I just stopped breathing. She said she went running down the hall with me and they had to suction and stimulate me to breathe! I also had several times as a kid when I stopped breathing and she had to call 911. Now I have central sleep apnea which is pretty much the same thing. But, like you, I also have times when I hyperventilate because I feel like I cannot catch my breath or get enough oxygen. Not sure what thats all about Kinda scary. I hope your appointment tomorrow goes well!!!!!! <3

Has anyone had a laparoscopic surgery done while they have POTS? I am supposed to get a second laparoscopy done for my endometriosis and I am a little concerned. The first one I had done (to diagnose the endometriosis) was before my POTS symptoms were really bad. I had no PVC, SVT, flushing, and only had mild tachycardia. I'm worried because I know that they have to blow your belly up with CO2 and this can cause blood pressure fluctuations as well as arrhythmias. (I get PVC's just from eating a large meal!) Has anyone here had any experience with this?? I am really scared to have it done

I'm honestly not sure if they have to dilate your eyes to check for it or not. Maybe you can call your doctor and ask? Make sure to tell them you are seeing bright flashing lights.

I am unfortunately acidic . I have constant acid reflux (although the H2 blockers do help with this) I am wondering if that article meant hypOventilation, not hypERventilation? It's true that elevated aldosterone will cause a decrease in potassium (b/c it holds on to sodium and excretes potassium), but if anything it would cause hypOventilation to raise the potassium. In general metabolic acidosis will cause one to hyperventilate (as seen in diabetic ketoacidosis), and metabolic alkalosis will cause one to hypoventilate. Hyperventilation causes hypocapnia (decreased levels of CO2 in your blood since you are exhaling it). Hypocapnia causes alkalosis. Hypocapnia (hyperventilation) also causes hypokalemia (low potassium) because hydrogen moves out of your cells to try to rectify the acid base balance, and potassium moves into your cells meaning lower potassium in your blood (hydrogen and potassium are both cations--when one moves in, the other moves out). That's why they sometimes treat ventilator patients with hyperkalemia (high potassium) with hyperventilation.

Have you been to see an opthamologist? Sometimes seeing flashes of light can mean nothing serious, but it really needs to be evaluated b/c it could also signal a retinal tear or even possible detatchment (in which you would lose your vision). I would really get this evaluated just to be sure.

I do not think that the BP difference is POTS related--your blood pressure should be roughly the same in each arm unless there is an obstruction or loss of blood flow. Have you checked your pulses in each wrist? An MRA (to see your blood vessels) would be the best thing for you to get. A lot of doctors order one along with an MRI so you may be getting one and not even know it . If they inject gadolinium then you are most likely getting an MRA (although they do sometimes use it in MRIs). Hope they figure it out soon!

I also do not know much about running these things, but it seems to me that there are a lot of volunteers who can devote a little bit of time. If Michelle's job was broken down and each volunteer was given a small but specific task, then everything could be accomplished. There would probably need to be one or two volunteers who's job it would be to make sure that everyone else is doing their job --kind of just to oversee things. Again... I dont really know anything about running these things, it just made sense to me . I would also be willing to pay a small fee to use the site if that is the route it goes down.

Have you ever been evaluated for Subclavian Steal or Thoracic Outlet Syndrome? Glad you are getting the MRI . Hopefully this will shed some light on things!

Hi everyone! I am looking to buy a cooling vest and would like to know: 1) What brand do you have? 2) Do you find that it really helps? I am looking for one primarily for my graduation in 2 weeks (it's outside). Ideally it would not be very heavy or bulky, and would not make your clothing wet! Thanks so much!!

Has anyone here actually had a CXR where it said that their heart or great vessels were small?? Mine are of normal size. I think this research may benefit a small population of people with orthostatic intolerance, but it does not seem to fit the whole picture for the majority of us. That being said, I believe that exercise is good for everyone. There have even been studies that have shown the benefits of exercise in heart failure patients. So, while I do not buy in to "the grinch" theory, I do believe that exercise can only help. (and recumbent exercise just makes good sense if you have problems standing up).

I wish our problems were as simple as re-conditioning. I was in very good shape when POTS hit me like a truck. That's not to say that re-conditioning is not beneficial though- I definitely see a difference in myself when I exercise regularly

I agree, pretty much eveyone I've known (healthy or not) who has been tested was low. I was very very low. Unfortunately when I try to take the suppliments they make me feel worse . I have NO idea why. Anyone else have the same reaction?

I am wrong, it can affect the pleura. Here is some information you may find interesting: http://en.wikipedia.org/wiki/Catamenial_pneumothorax

That must have been so scary. It's really hard when doctors dont understand what's going on because they have never heard of it. The best thing we can do is to arm ourselves with as much knowledge as possible, and write it down. It is very helpful to have a list with you that includes your medical conditions (and possibly a very brief description of what it is if it's rare), medications you are taking, allergies or adverse drug reactions, and your normal vital signs (I say this because ours are frequently off and they need to know what your normal is to even begin to treat you). I keep mine in my purse so it is always with me. As far as endometriosis goes, I have also read that in rare cases it can travel to your lungs...although I'm not sure if that includes your pleural cavity. When I read it I assumed that it was more pulmonary embolism related, but who is to say for sure! Have you been evaluated for any other autoimmune diseases? Sorry to hear you're having such a rough time

Yes! Cauterizing them may be a good option! I am wondering if your one plug is in far enough? You should not be able to feel them unless they are sticking out too far (that happened to me and I just returned to my eye doctor and he pushed it right back in, now its great!)