bustersacc11

Yes, years ago I tried Midodrine. I was only taking 5mg once a day. Terrible side effects. Then I was basically licking the stick at 2.5mg. I was having the same issues as you described. When my heart rates starting going down into the 30's while awake. Plus, I was getting exaggerated high blood pressures when the drug was at its peak. That is when I stopped it. Those heart rates are too low and potentially dangerous. Also, it wasn't helping my symptoms. I scratched that from my "been there done that" list.

lemonsin2lemonade thank you for posting this article. I think it is a great reference and tool for those that are newly dx. and physicians that are really trying to help their patients. Also, it made me realize how long I have been sick. I scanned over the 40 references and they all looked familiar. Kinda scary.

You mentioned a systemic problem. Do your doctors think the systemic problem may be causing your possible dysautonomia symptoms? I agree with SeattleRain about what is your target HR. If you were completing a cardiac stress test and on the treadmill, for example 15min, and got your max HR up to 190 (approp for age, etc) then I was assume you are still in pretty good shape. I have high norepi levels. Even though I can reach my target HR with exercise, I have to be careful sometimes with how strenuous my activity is. I can have an over-shoot of adrenaline and my HR will sky rocket. Not a good feeling and is scary sometimes. I don’t know if that is what happen. Also, when you drink coffee you become symptomatic. I am sure results will vary based on who you ask. If you feel that right now you are on the hyper side of things, maybe you are sensitive to caffeine (stimulants). By drinking coffee you are opening up the adrenaline flood gates and it is making you feel worse. Dysautonomia is a roller coaster ride. Provides me with hours or a day of feeling OK or the opposite. It waxes and wanes. To being constant. Yes, pieces of what you mention sound familiar. Please understand that by no means am I saying that you have dysautonomia. From your note, you are being worked up, which is great. Once you have all your data, plus your subjective piece I hope you find anwers. Are you able to get to a doctor and facility that is experienced with dysautonomia cases and testing?

Methyldopa will lower blood pressure and it lowered mine. For example, I was running 130-140's/80-90's at rest with tons of cardiac symptoms. Surge BP would go much higher and symptoms more intense. For me, 250mg BID I was running at rest on avg. 110/60-70's with no surges but it really didn't suppress my cardiac or dysautonomia symptoms. Yes, it can effect heart rate since it reduces activation of beta receptors. Not to the same degree as a beta blockers since it truly blocks receptors from effecting heart rate. Methyldopa will not effect HR increase with activity.

A lot of our medication regimens can be trial and error until we find the right one or combo. I am curious as I have seen it mentioned a couple times on the forum when it is suggested to take Adderall when adrenaline surges exist. I understand it is a central nervous system stimulants that affect chemicals in the brain and nerves that contribute to hyperactivity, like ADHD. Have not been able to find a mechanism of action by this drug that would decrease adrenaline or adrenaline like symptoms. Could you explain to me why your Dr suggested this drug for your adrenaline rushes?

Two drugs that you may want to talk to dr about is Methyldopa and clonidine. they are same class of drugs and both have similar effects of reducing sympathetic tone and would have similar side effects. methyldopa provides more steady effects and that the advantage of methyldopa is that it reduces activation of both alpha and beta receptors. I don't have POTS but severe adrenaline surges and hyperadrenergic form of dysautonomia. Those surges for me would come on regardless of position and it can be very scary. Some times it would be everyday. it had a mind of its own. Had to go to ER couple times because the surge got unbearable and wouldn't let up. Afraid I was going to have a heart attack. I have never tried clonidine but many others on this site have experience with it. I been on methyldopa for 4 years and it got rid of adrenaline surges. It will lower blood pressure so I don't know if low blood pressure is an issue for you. I am sure others out there in the forum can offer other suggestions whether it is meds or not that have worked for them to tone down their adrenaline surges. Hang in there!

I am sorry and empathize with what you are going through. Myself and many other members totally get where you are right now. This dysautonomia takes us on such a roller coaster ride mentally, physically, and emotionally. It is taxing and some days it just wears you out to the point of just wanting to scream! I have been sick for 5 years and on disability. Through my struggles I still fine enjoyment with sports. Keeps my mind off things a little especially when I am having relapses or bad stretches. As an avid college basketball fan the famous coach Jimmy Valvano always inspired me. His motto of "Don't Give Up . . . Don't Ever Give Up." His speech never gets old to; in fact, I find it as a tool for motivation. He said, “To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special.” I always hope and pray for you and everyone with dysautonomia that at some point, you will find yourself spending less time thinking about this syndrome and always on the things that makes you happy.

I genuinely appreciate everyone who replied. What makes it special for me to read these responses is it is coming from people that sympathize but in many ways empathize with what I am going through. I thank you for taking the time to respond. My father was chronically ill from the time I was 16 to 25 yrs old. During those adolescent years my friends were aware that my dad was sick. They still were my friends but reflecting back we didn’t do as much over my house. Looking back, I don’t know if I was anxious about having them over so I always tried to avoid it or did they not want to come over because they were uncomfortable. I guess I will never really know. More importantly, I KNOW a lot of my insecurities today come from how my life growing up with a sick dad affected me, having to care for him, and our household for so long. I had to grow up fast and take on responsibilities that typically someone my age usually doesn’t have to taken on. I don’t want that for my daughter. For as long as I can, the details and limitations caused by my dysautonomia I just don’t want to bring her in this world. I hope that when she is much older she will understand that I did it for her best interest to live without any more needed stressors. I know that I am living a terrible lie and it is stressing me out. I agree that living this lie will only dig me deeper into a hole. If I find friends or as my daughter makes friends eventually they are going to get curious as to what I am saying doesn’t add up. I kept putting it off and telling myself well she is an infant, or she is two, and I really won’t have to worry about it until she gets into kindergarten. Well time flies and here we are! I have to draw the line in the sand and either start telling people what is wrong to an extent and accept the fact if they don’t want to continue are friendship or keep telling people that I do consultant work with hopes that a prayer will be answered some day and I will be able to work in some capacity soon.

Nursing school is like military boot camp. If you have dysautonomia and going to nursing school. Your inspiring! I am a male nurse but it took my wife who is a nurse to figure out what was wrong with me before the docs could. She is a beautiful well-educated women minus the POTS. I am not working right now but many out there are able to work. Many things you can do with your nursing license that doesn't require you to be on your feet all day if it becomes a problem. I was sharing this with another nurse on this forum. Even if you stop working, which I hope will never be the case for you only when you decide to retire, but keep paying your renewal fees. Don't let your license expire.

Dysautonomia for me the past 5 years has made it hard for me exercise consistently. I will go periods when I can start on a recumbent bike and work up to a brisk walk and weights. Then I will have a relapse and quickly get deconditioned and have to start all over again. But I always keep trying to exercise. I have tried Dr. Levines program but I do not have POTS. My dysregulation comes with slow heart rate and high blood pressures / surges. I used his program as a guide. There was no way after 2 weeks of exercising that I was going to be able to do 20min of recumbent bike and keep my HR in 140-150bpm. I was having to go from 40bpm to 150bpm and it was exhausting. Nevertheless, his program certainly will not hurt to try, if interested. I used to work in surgical ICU as a nurse. If they were not on a breathing machine and had activity orders to get out of bed and walk. THEY MEANT IT! Even back in school we learn the benefits of exercise BUT we were drilled on the consequences it can have on your body if you don't do anything. Whether it is dysautonomia, cancer, heart disease, having a surgical procedure, etc. laying around has no benefit. If it just means doing range of motion exercises in a chair or even leg muscle exercises in bed. Do something. Science behind exercise outlined above I agree with. I recall Dr. Biaggioni simply shared with me that with exercise you are giving your engine (ANS) a tune-up. Once that tune up (re-regulation) takes effect the engine is running on all cylinders correctly again. Take it slow, find what works for you, but never stop trying some sort of exercise even when you may think it is nothing.

I have taken a centrally-acting sympathomimetics, Methyldopa which doesn't have the rebound hypertension issue like clonidine, and propranolol at the same time briefly. Centrally-acting sympathomimetics(works up in the brain area) reduces sympathetic outflow so from my experience symptoms calmed down and lowered norepinephrine levels. While propranolol just blocked the effects of adrenaline. So, your third paragraph reference makes sense to me (not a dr). As you are weening off clondine you are potentially opening up those adrenaline flood gates again since the two drugs mechanism of action are different. Even though you are blocking the attachment of the adrenaline to the receptors that affect the heart you're not necessarily always lowering your norepinephrine levels. Way I understand it and could be wrong. The last paragraph. Suggesting the possibility that it has a Midodrine effect, while blocking adrenaline to beta receptors on the heart and periphery. Interesting. You are having controlled blood pressure with Clonidine alone but since you added another blood pressure med to the mix your pressures rise is interesting. I understand going from 80/50 to 110/90 that you feel a difference while those are still great numbers. Aside from the blood pressures the purpose of adding Propranolol was for symptom relief. If you are not feeling any better and it has been awhile trying the two call your Dr. and ask for advice on moving forward.

The past four years I have been a stay at home dad, while my wife works full time. I mentioned this to another forum member in PM. We live in a very cynical world. I am always with my daughter so people ask me what do you do. How come your around more than her mom. I lie and tell them that I do consultant work. I have more flexibility. I don’t what else to say. If I go into dysautonomia and they look it up on wikipedia they would be scared off. This month my heart was ripped and it was like a knife in my heart. My daughter comes home from pre-school and tells me that daddies stay at home, nana’s go to the store, and only mommies work. Other than family, nobody knows I am sick. I am scared for my family. I am scared that people will isolate my daughter and poke fun at her. I don’t know what to do. Pre-school and they are going around the class and asking what does your mom and dad do for work. She doesn’t understand our different roles as parents and was saying no..mommies work, not daddies. She is so innocent and I don’t want her latter on having to live my lie by telling people my daddy does consultant work. I am very scared for the wellfare of my family far more than my life may end up being dysautonomia and methyldopa. What I wouldn't give to have a successful treatment to get back to work. Not for the money but for other reasons beyond people’s comprehension. Tough time right now.

I totally get where you are coming from. Good luck! If you have questions about cardiac testing don't hesitate to ask.

Cardiac MRI was back in 2007 when I first became ill. We identified that I have a slow heart rate and extremely lightheaded. They wanted to see if I had cardiomyopathy or deposits around or in the ficinity of the SA node. Everything back fine. Structural and mechanical solid with a normal EF and pressure values. No myopathy or infiltrates. Have a PM now so unless I switch the hardware out to Medtronic MRI compatible device and leads I am no longer able to have MRI. At the time, it was the right thing to do. 2009 still new to this dysautonomia and in complete denial I kept having terrible chest pains. They have been atypical chest pain episodes but when it is happening to you who in heck knows whether this is the one or should i just wait for it to go away. I went to the ED and they went through all the risk factors and they wanted to do a cath. I am a RN by profession with a ICU/ cardiac background. Unable to work the past 4 years. I was like no way..with a cath. It hasn't become the standard of practice ct scan before a cath as I mention earlier with pro and cons. But I knew the likelihood of me at 36-37 yrs old at time having clogged arteries was pretty low. That is when I agreed to have a cath only after a ct scan with contrast was done first. The interventional cardiologist agreed. All my arteries were clean with no fatty deposits or plaque. Very reassuring. Saved me from risks even though they are low of having to go through a cardiac cath. My ANS Malfunction has caused me to have slow heart rates and high blood pressures and adrenaline surges along with a host of other symptoms. Why are you inquiring about these two tests, if you don't mind me asking?

Yes . i had both. It was early when trying to figure out what was going on with me. However, Cardiac MRI or CT are not typically order for someone with primary dysautonomia unless they suspect something else may be going on and dysautonomia is secondary. Cardiac CT is an excellent non-invasive test that looks at the arteries of the heart, structure, and mechanical side of the heart. Benefit is if they do a CT scan with contrast dye they can see if your arteries are clean, then it saved you having to go through a cardiac cath. Con is if you have any obstruction than you would proceed with a cath. Cardiac MRI is excellent at identifying and the gold standard when looking at whether cardiomyopathy is present or deposits in the heart muscle are present like in the case of amyloid. Another excellent diagnostic tool that can give way more data on the mechanical and structural data than an echo. Costly tests. Importantly, have a good radiologist that has been trained in interpreting cardiac MRI would be important for me.

I was taught when you take a sitting or standing blood pressure that you are supposed to flex the arm and support it on a smooth surface at heart level. If you let your arm hang down when taking a sitting or standing blood pressure that it can give you an inaccurate value. If arm is hanging down it can give you higher blood pressure values, which may be inaccurate value. Anyone been instructed differently?

I thought that study closed already? I didn't realize it went to 2013. I was prescribed methyldopa by vandy dr. For me, it didn't help my fatigue, worsen my exercise tolerance, and overall didn't improve my quality of life. Vandy likes their methyldopa. Appears to be the drug of choice over clonidine for those with hyperadrenergic component. Rationale is it has a more steadier effect than clonidine. Man..it's side effects are tough. I think they are receiving funding from NIH. For the NIH to provide grant money they must have been convincing that they may have something. I was labeled CFS but never agreed that I had it. Later it was agreed that I have fatigue component but nothing like someone who truly has CFS. I get very frustrated because I wish there was more research going on with dysautonomia. Truly, CFS research has brought nothing but one dead end after another. There is very limited funding for CFS and dysautonomia. It stinks.

I have had NE blood test done twice at vanderbilt. From my experience, vandy incorporated it with my AFTs. Make sure they start an IV! When you are standing you don't want them fishing for a vein and try to stick you for a blood draw. That can cause the adrenaline flood gates to open even more. About 15 minutes lying flat then they draw a couple vials of blood from your IV site. For me, when I was done with all the other AfT testing and i was at the last step which is their simple TTT they drew the last set of blood which would have been about 30 minutes. I don't know what others experience at vanderbilt was but this was just last year. I would go for 30 minutes upright. You are basically doing an orthostatic challenge test. Should give you the data you are looking for. Hope this helps.

I have been researching for a stay at home job for some time. I was an RN for 15 years. Out of work for the past 4 years. I am very cautious about some of these websites that offer stay at home work. Read more articles about how they are scams. Anyone had any luck with finding work from home? Or any suggestions of honest sites that can be of service?

I am on the hyperadrenergic side. Over the years i have tried during social gatherings and it always turns out with a bad outcome. I mean a sip of red wine sends me into a tail spin. i am not exaggerating. Heart starts pounding, blood pressure goes up, get very lightheaded, other cardiac oddities. My wife and I went out over the holidays with another couple with kids and the other couples husband asked me so what kind of beer you want. I saw my wife looking at me. The LOOK! You better order water. I go ahead get a bud light bottle. I slowly drank over the course of an hour or so. Left feeling lousy. It didn't have the dramatic and immediate effect like wine or liquor. Either way none of it I really tolerate. I know it not part of your post but I don't even tolerate decaf coffee. Regular coffee I am convinced would give me a heart attack or stroke. Espresso would kill me. Maybe you will have a different tolerance. I could never get an answer from the autonomic dr why I am so sensitive.

I have no idea why he acted that way but i can tell you ways to make sure it doesn't happen again or at least a paper trail is started on them so if it becomes a consistent behavior hopefully they are discipline appropriately. for example, Every doctor has to be licensed in the state they practice. Each state has a dept. of licensure. For cases where they have not lived up to his or her professional responsibilities you can file complaint. Insurance companies have patient satisfaction surveys on drs they reimburse. If enough complaints are filed they will drop the dr. if it is a clinic within a hospital setting they have patient affair dept. they will directly investigate your complaint.

Did you have done epidermal nerve fiber density test and sweat gland nerve fiber density test? I had two biopsies sent John Hopkins for analysis. I was told small fiber neuropathy has its own set of symptoms and the autonomic neuropathy has its own set of symptoms. If you have both then they can start looking for that link that is causes both, like autoimmune, etc. has you mentioned. I hope they find answers!

I got sick back in 2007. The first thing I recall was slow heart rates. Never checked my heart rate before I got sick because I never had the need to. I noticed that I lived in the 40-50’s and occasional dip to 30s at night. I was dealing with trying to find answers to this dysautonomia and heart rate issues. I had no idea what the heck was going on. Do I or don’t I need a pacemaker. All the docs were very squeamish about putting one in. I was very lightheaded, dizzy, slow heart rate, but high-normal blood pressures. Since I had no structural or mechanical issues with my heart and just slow heart rates with no other abnormal rhythms they could not reassure me much benefit from a PM. Most people with just a slow heart rate really feel lousy when their heart rates stay in the 40’s or less usually accompanied by low blood pressure or when their HR’s are slow and won’t increase with activity. But I understand everyone is different. those people really benefit from pacemaker placement and they dont have dysautonomia. I was desperate and bit the bullet and got a pacemaker. Demand rate at 60. Abolished bradycardia and still feel lousy. Dysautonomia wins! More of my symptoms are related to this syndrome / ANS malfunction. Can’t blame it on the slow heart rates anymore. Sorry there is a point to my reply. I am hyperadrenergic subtype. I go through the same thing you are experiencing. These dreadful waxing and waning periods with my symptoms. We go through these terrible spells and I am the first to admit the only thing that I can do when I talk to someone is make the correlation with a blood pressure and heart rate and my symptoms at the time. Cause I don’t know what else to do. I am not by any means discounting that you don’t feel good right now but those are really good heart rates and if your blood pressure is solid with those numbers even better. You point out directly and indirectly that your fatigued, tired, fatigued breathing, feel like death. Also, that you have been exercising. I have read a lot of posts about exercising on this website. I encourage it and strongly agree that exercising whether you have dysautonomia, recovering from surgery, or whatever chronic issues you may have exercise can be helpful. Conversely, there is a delicate balance when it comes to us and maybe you have over did it. I don’t know. Pure spectulation on my part. Aside from the numbers you know how you felt before and these are your symptoms now. I hope you can get in to see someone and get to feeling better or this spell will pass. Best! I know it stinks.

Good Evening: Been on Methyldopa for 4 years. I really have been complaining about the side effects of Methyldopa and pleaded to try something else. My Dr is willing to try Losartan to help with elevated BP and adrenaline surges but not sure if it will work as well. Wasn't keen on clonidine since Methyldopa and clonidine are in the same class of drugs and both have similar effects of reducing sympathetic tone and would have similar side effects. Their experience they have found methyldopa to provide more steady effects and that the advantage of methyldopa is that it reduces activation of both alpha and beta receptors. He is very reluctant. Anyway, I am going to try losartan together with methyldopa and if it works tapper off the methyldopa. It is a shot in the dark but I have to try something. Would really like to hear any feedback on losartan takers out there in DINET world! Has it worked or not? Any annoying side effects? Thanks Buster

I have an appointment with my cardiologist tomorrow and looking to substitute methyldopa for something else with treating my hyperadrenergic / pseudopheochromocytoma dx. Anyone out there currently taking methyldopa? How are you tolerating it? If not, what are you taking?