HopefulLady

Question for you .. Before I got to a doctor who actually thought what I had was an autonomic issue. I remember being in the ER and the doctor discharged me saying that he thought I was sensitive to my bodies own adrenaline which is why I was having abnormal HR increases upon movement or standing. He said it's rare but it happens is that another way of saying you have an autonomic problem? Is that something that happens to people with dysautonomia in general? Or is it possible to not have dysautonomia but still be sensitive to your bodies own adrenaline? You would think a normal person's body would not be sensitive to their own chemicals/hormones LOL.

When I wasn't on my medication It was very hard for me to eat. I felt sick to my stomach all the time. And I would have these really weird gag reflux spells. Just the smell of something and I would gag and vomit. My gag reflux was really sensitive to smells and food. I always though that was highly strange LOL. I would also have these extreme hunger pains even after I would eat. I would get those a lot. But yes I found it hard to eat lots of days. Until I got back on my medication now i eat all the time LOL. I wanted to add when I couldn't really eat I would at least try to drink lot's of water and gatorade. And I would eat small things like crackers and cheese. Or small portions of fruit. I try to eat smaller meals now and spread them out throughout the day instead of going hours without eating.

Pat that's awsome!! I find they work for me too I can now stand and do normal things without feeling like I am going to pass out. The pre-syncope scared the living daylights out of me because it was happening several times a week. I just felt useless. Like I couldn't do anything to control the symptoms they were controlling me. And then add ER docs and other Docs on top of it telling you that your causing these symptoms and you just feel hopeless. I am so grateful that the SNRI helps give me a better quality of life back. It's good to see it's helping other's too.

I wanted to add that when I am not on my SNRI I feel those adrenaline surges all the time. They are the most dreadful feeling and I noticed I would get them when I stood up or if I was lifting my hands over my head like to hang curtains. My pupils would get really big I felt really hot in my face and I could feel my heart race a million miles an hour. My vision would dim and I would get really dizzy to the point I felt like I would faint. The only thing that seemed to help without medication was cool water on my face a fan and a bed. But I always felt like my body was producing mass amounts of adrenaline. Somehow the Effexor seemed to level these things out. I can stand now and I don't feel my heart racing a million miles an hour. And I only get dizzy every once in awhile. I would also shake too!!! Benzodiazapines do nothing for me other than make me sleep. They never took the edge off. And Ativan would drop my blood pressure way too low and it gave me hives. But then what really puzzles me is I can only take the effexor .. When they put me on lexapro I broke out in full hives that lasted for 2 months!!! When they gave me paxil it caused some really unsettling symptoms. And prestiq! That crap sent me to the ER with tachycardia and HBP ... I don't understand why I can take the effexor xr but not the others. My doc and I were talking about it and we came up with the fact the extended release may be better for people who have really sensitive nervous systems because it only releases a bit of the drug at a time instead of the non time released meds. So because I know how overly sensitive I am to drugs I always ask for the extended release if available. I know they have serums too for the ssri's/snri's. I guess it just depends sometimes you have to try a few before you can find one that your body will tolerate. And some people just can't tolerate them at all.

WOW !! These are some great responses! Thank You very much. I had read too that doctors are not sure exactly how they help or how they effect our bodies over long term use. I just know if it wasn't for this effexor xr I would be a dizzy dame all day long not being able to stand and do normal things comfortably without my heart racing out of my chest. It also seems to help with the GI symptoms I was having too. I just wanted to know how this stuff works in the brain. And doctors don't seem to be able to give you a really good explanation. LOL perhaps it's because they don't really know.

I Just took one about 2 weeks ago the same one your daughter is having done they ordered a 5-hiaa and they checked catecholamine, nor-ephinephrine, dopamine, metanephrines, ephinephrine levels. I was instructed to keep this urine in the fridge at all times!! I even bought a bag of ice to transport it back to the lab to keep it cool while it was in my car. You have to keep that urine cool at all times. As soon as I got to the lab in the Hospital they immediately took it from me and placed it in the fridge. I did mine at home and kept it in the fridge as instructed by the lab and doctor. I also was told it must be brought back the very next day to be sent off for testing.

Yeah that's what they say. They usually don't even treat them unless your getting thousands of them a day. And most often the drugs make them worse. LOL I just know that they can feel really yucky but from what the Doc says they are most always benign and you just have to ignore them which I have pretty much learned to do. If they saw them on the Heart Monitor that's good they would be able to tell right then and there if they were anything serious. Those doctors know when they are serious and when they are not.

Pvc's and Pac's feel like your heart is actually skipping a beat. Usually for me there is a brief pause followed by a very strong beat that leaves a butterfly feeling in my chest and sometimes they can take your breath away for a short second. They are very scary when you first get them because they feel like your heart actually stops momentarily. Pvc's come from the lower (ventricles)chamber's in the heart . And Pac's originate from the Upper(atrial) chamber's of the heart. They usually don't cause any symptoms at all and many people have them but don't feel them. However they can cause things like dizziness, chest pain, trouble breathing ect, it's always best to get them checked out by a Cardiologist if you suspect your having them to make sure there is no underlying condition that is causing them. Usually a 30 event monitor is best at catching them because they tend to come and go in spurts.

Yes I notice they increase as well before my period! I started slow-mag and coq10 and both seem to help reduce them quite a bit. Thanks for your input. I was wondering if maybe there was a connection in people who have dysautonmia. Your doctor basically said the same thing my Cardio said. They are scary sometimes though. Thank You again for your response!

I take coq10 for pvc's and pac's. It helps to reduce them. I was getting skipped beats almost everyday and then I started 200mg of coq10 daily and they dramatically reduced. Now instead of getting them everyday I can go a few days or even weeks with none. I think this supplement is excellent to calm the cells in the heart down. I also take magnesium or slow-mag with it. I do not have any known heart problems other than Pvc's or Pacs and sinus tachycardia.

Does anyone here deal with Pac's or Pvc's? If so could they be connected to Dysautomia? I started to get them more frequently and they can happen at anytime during the day or night. I do not drink or ingest caffeine. the most I have felt in a 24 hour period is about 10 of them. They have never been caught during cardiac workups (of course!) LOL. But I am now on a 30 day event monitor so hopefully they will show up during this test. I have no know heart problems all of my cardiac tests have been normal. EP doc says these are usually a benign condition in a structurally normal heart. I don't have any symptoms with them they are just a little scary. Because they seem to happen a few times a week I am just curious if anyone else has them. And if they can be caused by Dysautonomia?

Wow I have had symptoms like this and thought it was a bladder infection but I tested negative for the bladder infection. It comes and goes and seems to show up before I get my period. It feels like I have the urge to urinate and it's a pressure like feeling but hardly any urine comes out. It may happen several times during the day and then it will just disappear after a few days and then come back months or weeks down the line. I had no idea that this could also be a problem in people with dysautonomia. I just looked up interstitial cystitis and it sounds exactly like what I have been having. I use to drink tins of cranberry juice thinking I had a UTI or Bladder infection when this would happen. That is so weird everything is just all coming together for me after dealing with all of these symptoms for so long.

I am just wondering does anyone know how SSRI'S or SNRI'S help with dysautonomia? What exactly are they supposed to do to treat it? I take Effexor XR mostly because I couldn't tolerate the other one's I tried. And it just so happened to control those terrible dizzy spells/pre-syncope that I was dealing with as well as some other symptoms. I am just curious as to what these drugs do in the brain to control the dizziness and why they can be so effective for some of us? I have always wondered this and can't really find too much information about it online. Also I don't tolerate beta blockers too well ... Plus I have exercised induced asthma so I can't take them. My regular Doctor was going to try Clonidine? Does Clonidine mix well with Snri's? Does anyone currently take both and find them to be a good combo? Thank You

Thank You Poohbear ... This makes me feel a lot better. Dr. Deering did say they use nitroglycerin in they're office for this test. When He saw me for the first time. His nurse took my blood pressure and Hr lying down, sitting up, and than standing. At which point Dr. Deering came in the room and explained to me what Dysautonomia was, the causes of it, and then scheduled me for the TTT. I am actually thrilled to be having this test done so I can finally get some answer's was just concerned about the Meds interfering with the results. Thank You again everyone for your input and advice. I am so happy to have found this place.

Hi Angela I came off it because I thought at least I was told that what I had was just anxiety attacks ... After seeking help for anxiety through a therapist and learning to cope with my anxiety( or so I thought) I wanted to get off the medicine all together and deal with my anxiety another way. I didn't want to be dependent upon antidepressents for the rest of my life for what I was told were just anxiety attacks. I kept coming off the medicine thinking I could handle my so called anxiety disorder without those drugs. Little did I know I had much more going on that just a panic attack. But I didn't make the connection until 9 years later until I started doing more research about my symptoms and what was going on. Anxiety does not cause one's heart rate to rise to the extreme when they stand. And then go back to normal once they sit or lay down. I would wake up after being well rested and stand up and feel like i was going to faint. These symptoms didn't add up to what they were telling me. And I didn't really make that connection until being fully off the medication. I would wonder why I was unable to function without it. If this was just anxiety I would not have these issues medicine or no medicine. I hope that answers your question.

LOL that's funny .. I remember taking my stress test reports back to my regular doctor and he noted that the patient is 29 nice lady with atypical symptoms likely related to anxiety LMAO .. And then she saw the results of my stress test he noted my baseline heart rate was 132 LOL.. That was before I even moved a foot on the treadmill. And my regular doctor said baseline heart rate is 132 that's not a baseline HR LOL. Even my regular doctor said yeah we have a tendency to blame things on anxiety and stress when we don't know what it is and laughed! That is scary but how true it is I am just surprised she actually admitted it to me

Hi issie ... Thank you for your input. I am really thinking about rescheduling this tilt table test for next month .. And working with my regular doctor to wean off this medication over the next few weeks and then go back for the test. I know that it has to be done. I am just terrified of being off it again because my body will be a wreck but I know this has to be done if I ever expect to get a proper diagnosis. Because the effexor is def working and doing what it is supposed to do for me. And after researching this whole thing from my understanding before your tested for Autonomic dysfunction you must be off any medications that will interfere with the results of the test. Which is why I wanted to get some opinions. And I am afraid the only way to get the proper diagnosis I must come off this effexor first. I am going to talk to Dr. Deering on Monday and let him know my concerens and then we can go from there. Thanks Again everyone for your input!

Hi Simmy Thank You for your warm welcome! It is so amazing to actually talk to someone who can relate and has been through this. It's been a long journey and I have learned so much along the way that I no longer tolerate a doctor who can't figure it out so it must be the patients fault and it's all in they're head. Seems like most of us have been through this same thing. As far as the effexor goes. I was put on it by my first doctor thinking it was anxiety attacks not knowing until 9 years down the line that it was actually used off market to treat dysautonomia and other things as well .. I have tried paxil - bad reactions to it. Lexapro broke out in full hives, buspar had hives from that too. I couldn't take prestiqe, it gave me awful side effects. Ativan lowers my blood pressure too much i also get hives from that as well. I have a very sensitive nervous system and effexor the extended release form is the only one that my body will tolerate. Right now I am on the lowest dose 37.5 milligrams the highest I have been on is 75 mg. I have been on it on and off for 10 years and it has given me my life back. I only had side effects when I first started taking it which were dizziness ( which I was already used to so that was normal for me ) LOL ... Headaches, sweats, and weird dreams. It took my body about 4-5 months to adjust and for any side effects I was having to vanish. Now I feel normal most of the time I rarely get a dizzy spell and all of the 100 symptoms I was having have disappeared. But once I go off it they come back full force and all **** breaks loose again with my body. I know with these snri's and ssri's you have to start on the lowest dose and work your way up especially people like us who are already sensitive to medications. But even at the lowest does 37.5 milligrams my symptoms are well controlled. But from what I have read not everyone has luck with medications. So I am extremely grateful that something is helping me live a normal life. I still have good and bad days but 95% of the time I am able to lead a normal life without the pre-syncope spells and tachycardia is controlled better. Thank You for your advice I really appreciate everything and if I can help in any way please let me know

Hello everyone My name is Tara and I am new to the forum. I have for the past 10 years dealing with pre-syncope/dizzy spells, sinus tachycardia, BP swings which can be normal one minute and high the next. Pressure like feelings ( Not really Painful) in my head when I stand it feels like I am on an airplane and my hearing will fade out and the pressure lasts about a minute sometimes this happens if I change positions to fast as well. Hot flushing feeling in face, parathesia (burning sensations) in the back of my head and face when having these attacks . Tired all the time sleeping 12 hours a day. Vision changes (seeing black dots) and blurry vision during episodes. Gastro IBS like symptoms. Heat intolerance ... These spells seem to get worse in hot weather, I have to be under under a fan or sleep with the AC on blast all the time. I also experience a worsening of symptoms closer to my menstural cycle. I notice when I first stand it feels like my heart is pounding out my chest and continues to do so until I lay back down very uncomfortable feeling. Feels like my body in constantly dumping adrenaline. Waking up with body tremors sometimes they can happen at any time of the day but I will feel like my body is shaking and I can't control it. I also notice a worsening of symptoms after I eat especially a high carb meal or sugar. Highly sensitive to stimulants of any kind. Can't consume caffeine period. I also am very sensitive to medications in general especially any medication that messes with my nervous system. I have lived with this for 10 years and have been told I was having anxiety attacks and that I have been causing this to happen to. When did it all start? Well I am now 31 however after the birth of my second child 9 years ago I was 21.. The second day after I got home from the hospital I was using the bathroom. I remember standing up and feeling really dizzy my vision started to dim and I felt really hot and my heart was pounding. I crawled to the phone and called 911. After sitting for a few minutes the dizziness started to go away. I was able to walk to the kitchen and drink a glass of cold water and splashed cold water all over my face. I admit i was scared this was the first time I had ever felt dizzy or faint. Even during my pregnancy I was never dizzy never had any complications other than gestational diabetes which went away after I gave birth to my 2nd child. When the EMT's arrived they said my blood pressure was a little high and asked me if I wanted to go to the ER. I said no because I was feeling better at that point. ( And convinced myself this happened because I had just had a baby). Over the next few months I started to get more of these same spells that is when I started to really worry. So I went to an internal medicine doctor. I found myself leaving work all the time and these spells were taking over my life. At the time I didn't link them to standing or being on my feet for a long period of time. I was so scared of what was happening to me and was so disturbed by the pre-syncope/dizzy spells that I was not even paying attention to what my heart was doing. After a full physical standard blood work CBC, thyroid panel, 5 hour Glucose Tolerance Test, ect the internal medicine doctor said I was slightly dehyderated, and said this was all caused my anxiety attacks. So she attempted to put me on paxil, and a beta blocker. I ended up back in the ER because I was still having problems and my body was not reacting well to the medication. So she then prescribed me EFFEXOR XR 75 mg. This drug is the ONLY drug that I have been able to take for this and it seems to control most of symptoms and almost fainting spells. When I stand up I would no longer feel like my heart was racing out of my chest. So I finally accepted that it was anxiety and sought out a therapist. Even though in the back of my mind I just knew something else was going on. It took about 4 months for my body to stabilize after starting the effexor and as long as I took it I was almost 100% normal again. But everytime I would get off this medicine after the nasty withdrawls my symptoms would return after 4 months. Bringing me back to the doctors office for them to scold me for getting of the medicine and telling me that I was having panic attacks and I needed to stay on this medication. Even though I knew it was the symptoms that was causing the anxiety not the other way around. So I listened to my doctor and went back on the Effexor XR. My symptoms would then stabilize and I would feel about 95% Normal again after a few months. Well within 10 years of trying to go off this medication 3 times. I knew after the 3rd time something was not right. So I fired my regular doctor and found another internal medicine doctor. From this point on I was about 4 months off the Effexor for the 3rd time in 10 years. My new Internal doctor/endocrinologist/cardiologist ran a whole bunch of tests which included 1. EKG - Showed Sinus Tachycardia. 2. Abdominal/ Pelvic CT- NORMAL 3. 24 Urine looking for Pheochromocytoma/Carcinoid - Normal Full endorcine workup all normal!! 4. CT of head- NORMAL 5. Stress Test - Normal BUT my baseline HR before I even started to exercise was 132!!! HR got up to 184 after 8 minutes of being on the treadmill. 6. Echocardiogram- NORMAL 7. 24 holter- Normal ( Here again my mean HR was 95... the lowest my HR got was 69 and the highest was 147!!! And I did not do any exercise that day so that 147 HR must have been when I was up to use the bathroom or to get something to eat. Because I slept most of the day during this test unless I got up to eat or use the restroom. 8. Full Electrolyte pannel- Normal 9. Chest CT - Normal Chest and Lung CT w/contrast Chest Xray -Normal ( They were looking for Pulmonary Embilolism LOL) 10. Cortisol levels normal 11. Thyroid t3, t4, tsh - NORMAL 12. Nurse in ER saw a dramatic Jump in HR sitting 96 Standing 147 - Bp Stayed the same and only had risen slightly upon standing. So she says wow your heart rate does jump dramatically when you stand! I said you think? LOL But she says this can be caused by dehydration. In any event I was not dehydrated. Basically I have had every Test known to man ( Just About) LOL and everything comes back NORMAL and here I am sitting with a folder with 10 years of tests performed by several specialists . EKG's always showing sinus tachycardia MOST of the time. And literally I am not able to function off this EFfEXOR because I am constantly sick and dizzy and feel like I am going to faint. (Even though I have never actually fainted) I have felt like it on many occasions and it's truly terrifying. In and out of the ER all the time trying to find out what was wrong with me and never got any logical answer and was told to go home and take ativan and relax and see a therapist LOL. So why I am here today? Well after getting sick and tired of doctors telling me it's all in my head I am having panic attacks which I know now were not. I started to research my symptoms and found POTS. I took my laptop to the doctors office (regular internist) and told her this is what I have and everything that I have been going through for 10 years this is the only thing that makes sense. She agreed after several testing ( she was always concerned with my HR and was trying to figure out why my HR was always elevated in her office that she thought my issue was Autonomic. So... I found a doctor in Atlanta which is where I am Dr. Thomas Deering who is an electrophysiologist but also seems to understand dysautonomia to some extent. I have a tilt table scheduled for Monday May 10th at 1:30 @ finally feel like I am going to get a diagnosis. He also has me wearing a 30 day event monitor. My concerns: I have been back on the Effexor for 8 months. And I am worried that the tilt table is not going to pick up the worst of this **** thing because it MASKS my symptoms. I can almost function on it. But Dr. Deering does not want me to stop taking it. I am a bit confused as to why he would not take me off this medicine prior. Because It does control my HR and pre-syncope spells most of the time. My heart rate only gets up to 100-106 now when I stand instead of 130+. And I hardly ever get dizzy anymore because of the Effexor. I want this doctor to see my symptoms at it's worst and he is not going to see it while I am on the effexor. Please Help I am not sure what I should do??? Your time is very much appreciated. Thank You All for this wonderful community I would have never been able to get to this point without reading through here and all the info posted about dysautonomia. Tara