worththewords

I know in the past there has been a lot of talk about how there is a lack of books and even public awareness of dysautonomia. If you had the opportunity to inform the public of anything about dysautonomia and your life with a chronic illness, what would you want them to know? I know this is a tough question if you are battling brain fog but I'm really curious to know what everyone thinks would be the most important thing about dysautonomia to make others aware of.

I use a rowing machine, recumbent bike, and swimming.

Who are the doctors/researchers?

Yes, I have been diagnosed with this. Also known as PCOS, polycycstic ovarian syndrome which for me includes insulin resistant. This accompanied with a thyroid problem makes it very hard to lose weight even with a controlled diet. Are you taking anything for it? Feel free to PM if you want.

Personally, I'm still trying to figure out if I have a problem with adrenaline rushes. I think I do but it's something I am going to talk to my doc about on the 31st. I take Klonopin prescribed from my cardiologist because he says it depresses the nervous system and can help lower my heart rate. I'm allergic to beta blockers and I could never tolerate meds such as florinef, clonidine, etc. to help with my POTS. I know there has been a lot going around about Klonopin and addiction on this board. First off, that is the least of my worries if it is going to make me feel better. As far as it becoming an addiction goes, yes, you will notice if you forget to take it. Unlike other addictions it doesn't make you crave more and act out on it. I've gone off of it once for awhile. You simply lower your dose and ween yourself off. It wasn't a problem at all for me.

I have to because I have a PFO hole in my heart. I think it is wise to do when you have any type of heart problem. Not worth the risk in my opinion

I swear by it! I initially started taking it because I was having difficulty sleeping. Now my cardiologist prescribes it for me since it depresses the nervous system and lowers heart rate. I take 0.5 twice a day - usually before bed and early enough in the morning so I can go back to sleep. I am supposed to start taking it 3 times a day. The groggy feeling will go away once you get used to it - give it two weeks. The only other thing worth noting, I think someone else said it, I can notice when I forget to take it.

Has anyone tried this with positive results?

On two occasions I've gone to the emergency room in really bad shape. Sometimes increased heart rate and trouble breathing because of it. I would say "I have POTS" and I ended up being drug tested immediately. I'm not a fan of the name. Now I say dysautonomia or a heart condition. In the past I've told people about having problems with my autonomic nervous system and they have asked how I deal with anxiety. Oh well, it's given me a few laughs at least.

Dopamax - very appropriate name for it! I took it a few years back for migraines and lack of sleep. It was very helpful - it also helps with weight loss but it definitely did make me feel dopey. I had a bit of a problem with my blood pressure getting too low. I'm not sure though if that was just the POTS. I hadn't been diagnosed at that point. I remember it being very helpful for me. I would probably be on it now but I am a full-time college student and can't afford to feel dopey. Please let us know how it works for you. Good luck!

Are you taking a beta blocker? I have asthma and can not tolerate beta blockers. Unfortunately calcium channel blockers didn't do anything for me either. Hope you are feeling better soon.

Melly, Does Klonopin help your vertigo? I take klonopin twice a day but I've never thought to take it during a vertigo spell. Curious to know if it helps you..

Last week I had tubes put in my ears because I have been battling with ear infections for a long time. I still continue to battle with problems with vertigo. Unfortunately it has been recommended that I do not take antivert - the drug most commonly prescribed for vertigo - as the side effects include increased heart rate. My ENT informed me that he will prescribe small doses of valium to take before bed to reduce chances of vertigo. I haven't heard about valium helping vertigo but it is common for him to prescribe when antivert can't be taken. I currently take Klonopin and I will have to go off of that. I found that klonopin lowers my heart rate and supresses my nervous system. According to my ENT, valium does the same. I was just curious if anyone takes this, how much, any side effects, what do you take it for, etc.

I just came from my ENT and just had this same discussion. Last week I had tubes put in my ears because I kept having so much trouble with ear infections. I'm still battling with vertigo though. He did feel that there could be a relation between the two. When you get vertigo your body gets more adrenaline going therefore triggering an overactive nervous system. Unfortunately, antivert - the drug most commonly prescribed for vertigo - is a anti-histamine and the side effect is increased heart rate. He has suggested I go on a small dose of valium that apparently helps decrease chances of vertigo and supresses the nervous system. I was just about to make a post about valium when I read your post. My ENT also told me there is a test they can do to determine if you have an actual ear problem or a neurological balance problem - they pretty much induce vertigo and run some tests to see how you react. At this time I am not doing this as it tends to send my heart rate up and I would have to do it in a hospital setting.

I feel in the not so grand canyon when summer hit. Even though I live in Florida, I think the increased heat did me in. I'm slowly starting to come out of it. I have felt well though since the springtime.

I would definitely say give it a shot - especially since they are going to monitor you in the hospital. I wish they would have done that for me! They gave it to me for POTS though. My first few doses gave me head rushes and close to fainting. I have heard that others have had success with it though! I hope it works for you.

I just skimmed over what everyone else wrote so I apologize if I repeat anything. I had the same concerns when it came time for my wisdom teeth to come out. I saw an oral surgeon who removed my wisdom teeth in an outpatient center that was tied into a local hospital - in case of any emergencies. My cardiologist faxed him some suggestions on making my experience easier. I made sure that the annesthesiologist stayed present the entire time. I stayed in the recovery room for an extra two hours to receive IV fluids. I felt back to normal, whatever that is, within a couple days.

From what I've read as well, Ivabradine doesn't have anything to do with hydration or blood volume. I'm really curious to hear about Dr. Low's research. Dr. Munger informed me about Ivabradine focuses on the sinus node and treating tachycardia/palpitations. I'm allergic to beta blockers so this was a drug that he was keeping an eye on for me. It doesn't seem as though it will be available in the US anytime soon though. I was curious if anyone else had their doctor mention this drug to them.

Hello everyone, I think I've heard of the study that Chad is referring to when I saw Dr. Stewart in NY. Dr. Stewart had mentioned that Dr. Low was about to do a new study on a new drug. The doctor I saw at Mayoclinic in Minnesota, Dr. Munger, also knows of a drug called Ivabradine that is under study overseas. Hopefully if it is a success it will come to the US. Although Dr. Munger wasn't sure if any of our pharmacuetical companies would ever distribute it because they don't feel they would make enough money off of it. Chad, I really look forward to reading what you have to post as you receive the information. Congrats on the record deal. Are you new to the band? I think I've lost count of how many times I've seen H2O perform in various places. I used to be a promoter in South FL, ran a small indie record label, did some management and booking, etc. before I got sick. I had to stop because the stress and hectic schedule was too much. I can't imagine having POTS and having to be on stage and on tour a lot! I have a hard time even attending shows sometimes with the loud sound, lights, and just being upright for so long. Hope this finds you well!

Great topic! I manage to shower every day, sometimes every other day. I don't like to do it when I am home alone as I tend to get very dizzy/palpitations...you know how it goes. I've learned to tolerate colder than normal showers and can shower in under 5 minutes. I think I'm working on some sort of record. Shaving is done with me sitting on the side of the bathtub, even something about that doesn't make me feel totally well though. Blow drying my hair can be difficult too. I can tolerate for a brief amount of time if I am feeling okay. I used to take super long, hot and steamy showers, shave everyday, etc. - that would just do me in completely if I tried that now.

Personality disorder?! Well, that's a new one. Just when I think doctors can't surprise me anymore.. I can't even begin to tell you how many medications I was prescribed for anxiety/depression over a 2 year period before I was ever taken seriously. I'm very sorry for what you have to go through. I was diagnosed with POTS after having an ablation (ugh! i seriously don't recommend those - i had a normal life, somewhat, before the ablation). I was diagnosed by a doc at Mayoclinic in MN and my FL cardiologist promised to help with my follow up care locally. The only help she meant was looking it up online and printing out one sheet of information. It's a little scary not having any doctors in my town who understands what I have. It makes trips to the ER pretty worthless. I can't tell you how many times I've been drug tested at the ER - I'm not sure if it's me saying I have "POTS" (yet explaining further) or just the symptoms I am displaying. Know that you aren't alone and this board is here for support if you aren't getting enough from home.

I didn't have time to read what everyone else wrote. I have POTS and PCOS. Hypoglycemia goes right along with the PCOS for me. Have you been diagnosed insulin resistant? I have that too.

Personally, if it were for diabetes or any other condition I would still be bothered by the amount of medication I have to take. It's really hard to wrap your mind around it and just be okay with it. The hardest time for me is when I have to tell a new doctor or fill out a form of all the medication I take. Sometimes it just feels ridiculous and even more so since I'm 22. Your husband's suggestion of having your kids label your bottles as a reminder is very cute. You are doing it for them, yourself, and your husband so that the best of you is available to all. Hang in there!

Naples, Florida POTS and hot Florida summers.. what a combination

I'm currently seeing Dr. Stewart for his study. I'm 22 and I didn't get the impression that he primarily focuses on pediatric patients (although I might be mistaken). There is info on his study on this site under 'studies' Dr. Stewart's knowledge on POTS has been very refreshing as most of the doctors I've seen rarely know what I am talking about or experiencing.