cindeebee

Thanks everyone for your comments. I guess my next step is to find another Neurologist as well (Is that the kind of doctor that deals with the Autonomic Nervous System?). You are right about my cardiologist only wanting to treat what is ailing my heart! I guess I was just wanting, no, hoping, I'm not damaging my heart while exercising with the high heart rate. I have seen so many other doctors and not one has helped me. This new cardiologist is just starting over, but I want to believe him when he tells me he knows about Dysauto. Maybe he'll dx me w fibromyalgia or CFS since Lyrica works so well for me (and I guess I'll have to 'up' my miralax! LOL). I have only been taking it at night to help me sleep and only once a week for when I REALLY need a good nights sleep, so it's not so hard on my digestion.

lol...on my bad flare-up days, I have to just lie down on a hard floor to get the blood back to my brain! Used to scare my husband when he'd come home and find me on the floor...now it's just routine . As for exercise: When I first started out exercising, it was very hard. I felt like I wanted to pass out if I stopped in the middle of exercising and afterwards. I've gotten better with cycling and if I miss a few days, I definitely can tell a difference. I don't feel great usually the next day, kinda gives me a flare-up, I guess, but the alternative is worse, so I push myself to do it. I push myself too hard sometimes, getting my heart rate close to 200, but am hoping it's not damaging my heart in the long run!

This is my 4th Cardiologist, and I drive 50 miles ea way to see him because he told me he has treated quite a few patients with Dysautonomia. He's starting me all over in the diagnosing process...holter, echo, and another Tilt Table Test, which I don't mind since my other dr's didn't know anything about Dysauto, but when I mentioned back pain, all-over pain, and joint pain, he says Dysauto doesn't cause this and has never heard of this as being a symptom. He also said this regarding nausea (I get nauseous after eating - and yes, I've had my gall bladder checked...and isn't our stomach/digestion part of the autonomic system??? ) . I want to believe he can help me, but if he doesn't believe all my symptoms are related to Dysauto, should I run for the hills...again??? He agrees that I have Neurocardiogenic Syncope (as I passed out in 7min on TTT) but he doesn't think this would cause all my other symptoms. My energy and fatigue are horrible. I don't sleep well, waking every two hours and when I wake up, I can't wait til it's time to go to bed again (Lyrica works wonders for me, but only take it about once a week, when I really need a good sleep, because it causes constipation. Believe it or not I am able to ride my bike. It's really the only thing I can tolerate. I don't feel great afterwards or the next day, probably because it takes my heart rate to 200.... To make matters worse, for my work, I sit at a computer all day long, which I don't know how much longer I can take... low back and coat hanger pain are the worse! So my question to all my Dysauto friends, do you have pain and/or nausea and KNOW they are related to Dysauto? Could it be a neuropathy issue? What about fibromyalgia (I asked my regular primary doc if she thought I had fibro and she said 'no')? I'm soooo tired of going doctor to doctor to find someone who knows anything about Dysauto, let alone spending money I don't have This new doc asked me to start wearing compression stockings, which have really helped with my dizzyness, but what am I gonna do in the summer??? Thanks for listening and best of luck to everyone on here. It's nice to have a place where we can all relate and share all our information. I wonder if our "doctors" ever check out this site??? Wouldn't that be great!

My vit d was around 31, and dr put me on 50,000IU for six months. Re-tested at 53 and now has me on 2,000 daily. I definitely felt better on the 50,000IU... I had sooo much more energy then and it's supposed to help with joint pain AND sleep. I wonder if it's gone back down now though, since I haven't been re-tested in a while. From what I remember, the dr says it doesn't work quickly and takes a while to get in your system. So I'm surprised he only put you on it for one month and then never retested . I would probably think about getting a new dr

I have Hypertension along with my Neurocardiogenic Syncope and intermittent POTS. I used to think I was having a heart attack all the time. Been to the E.R. many times, only to be sent home and the dr's telling me all the tests came back fine. I get chest pain, headaches, jaw pain, neck/carotid tightness, palpitations and my left arm gets so weak that I can barely lift it up. It used to be scary, I guess it still is, but I've learned to accept it, knowing I have Dysautonomia! Still trying to find a doc in my area to help me understand this syndrome. I've been to too many dr's who have just given up on me. Most, I'm finding out, haven't ever heard of Dysautonomia... they just want to label us with anxiety and put us all on antidepressants! Hang in there...one day we'll have answers... I hope!

Mine was low, about 31. And I had alot of pain, lack of energy and issues with sleep, which are symptoms of low vit D. My dr. put me on 50,000IU two times a week for about 6 months. I'm now taking 5,000 daily. Last I checked, my levels were around 50. It's definitely helped. I know all these symptoms are also related to our Dysautonomia, but if you haven't had those vit D levels checked...that would be a great place to start. I felt so much better w the vit D. Now, if it would only help with the dizziness...

I wake up several times a night. I immediately get a RUSH of Heat and start sweating too. But it doesn't seem like I've woken because I'm hot, it's like as soon as I wake up, adrenaline kicks in and I get that burst of heat. Very odd sensation. I take ibuprofen almost nightly to help me w pains so I can sleep, but about once a week I take Lyrica, when I want to get a really deep sleep.

Like most everyone here, I definitely get nauseous, with a very weird tunnel vision with lots of flashing lights. But another symptom I don't think I've seen on here, is that I get extremely hot and sweaty from head to toe, and my face feels very flush. I also have shortness of breath. I still haven't found a doctor in my area who knows about dysautonomia, but my current EP doctor says to just sit or lie down if I get symptomatic and stay hydrated . He thinks the meds for this are worse than the symptoms, so he advised me to take nothing, and just be aware of my symptoms before I pass out. I actually have Hypertension, and take Ramipril daily, but wonder if I should be put on a beta blocker. Am waiting to find a new (fourth) cardiologist to help me with this decision I am able to ride my bicycle, but with any kind of incline I can get my heart rate to 200, so worry I could be damaging my heart. Of course with dysautonomia, my blood pressure is very hard to regulate. If I miss one dose of my bp med, my bp goes through the roof. During my "time of the month" there is no helping... my symptoms are worsened ten-fold, and my blood pressure is all over the place, extreme highs to extreme lows.

1. dizzyness - can't get up quickly, can't squat or bend over, can't stand for too long...or will pass out. Flat-lined in 7 min on TTT 2. fatigue/lack of energy - usually feel best in morning, towards end of day I have to lie down on floor to get blood back in my head 3. tachycardia - from standing up quickly, also exercise-induced (HR around 200 with exercise, can't do any type of inclines or stairs) 4. blood pressure - going from hyper to hypo all day long. Diagnosed with hypertension, but have always had trouble keeping it level 5. chest/joint/stomach pain - from heart attack (left arm pain/weakness) symptoms and carotid tightness in my neck, to low back pain and gastro issues It's been really hard to do the top 5...would like to list at least 10, if not 20.

Wow. I've been complaining about, what seems like, a tightness to my carotid artery in my neck. I have somewhat controlled hypertension, but when it's not and it's going up, I get all the symptoms of having a heart attack, from chest pain to a very weak left arm... have been to the ER many times... I now just play off those symptoms because "they" tell me I'm fine. If and when I ever have a REAL heart attack, I'll probably just chalk it up as another dysautonomia spell. SCARY, I know.

Thanks for your response issie and nowwhat! I looked up Nephrology and it has to do with Kidney issues, which can affect blood pressure. I don't think I've ever had any issues with my kidneys though. But who knows. Doctors still really don't know why I have hypertension either, especially since I was diagnosed around age 36. My entire family has issues with hypertension, but none started as young as I was. Since I've met my medical insurance deductible for the year, I'm on a mission to try and get this all figured out... hopefully. Well, I just had a Sleep Study done this past Saturday, so I await anxiously for 5-8 days to get the results. If I have Central Apnea (no snoring) it could explain a lot. So I almost hope they find I have this. Isn't it sad we hope for confirmation of an illness, so we finally know what's wrong with us, so we can treat it correctly? =) I would think having dysautonomia would affect the way my autonomic system works while I'm sleeping as well. Makes sense really. And if it's not that, well my next doctor is my Gynecologist to check my hormone levels. I just need to find out why I'm extremely exhausted, even after sleep. I wake up with headaches/migraines, joint pain and the occasional night sweats. And when I look up all my symptoms online it points to a variety, of any number, of different illnesses... or quite possibly is it that I'm just getting older? I'm 42, still get carded when buying alcohol (that's really nice), but I feel like I'm 100 years old! Go figure. Oh and since we both share the Rare Hypertension WITH Hypotension issue - Don't you feel like the doctors should be more concerned for us since our blood pressures can be all over the place, all day and night. With those extremes, from high to low and back, I would think our hearts are working way too hard... maybe that's why I'm so dang tired all the time. Who knows. And I have had the 30 day Holter monitor as well, the only thing found was palpitations and some Tachycardia with exercise (my heart rate goes to about 205 - but my doctors aren't concerned at all with this!). Well, I'll update if I ever find anything else. Love this forum. Thanks to everyone. Have a great day. ~ cindeebee

Hi NowWhat! I'm new to this forum and searched Hypertension to find this post. Your story is almost exactly what I've gone through. Although I don't have any help for you, as I'm still getting the 'runaround' from all my doctors (I've seen 3 different Cardiologist, 1 Electrophysiologist, Rheumatologist, and Neurologist), I just wanted to let you know you are not alone. I'm 42, have hypertension and NeuroCardiogenic (orthostatic) Syncope. I've also just been diagnosed with a PFO. In 2006 I was diagnosed with Fifth's Disease, and I truly believe this has triggered so many issues for me including Rheumatoid Arthritis. I actually trained and ran my first 26.2 mile Marathon. I've never been a runner but set a goal to do this. This is where all my issues came to light. During training and exercising my blood pressure would lower to about 70/50. Everyone suggested taking in more salt and drinking more liquids. Nothing helped. In fact my 'ex-cardiologist' took me off my Ramipril and Hydrochlorothiazide. Slowly my BP started rising. And I'm very symptomatic with high BP. I get very bad headaches. I explained to my dr. that it was getting too high, and he said "well, just stay off the BP meds for a while...it won't kill you." That was when I knew I needed a new doctor. I have alot of other issues I don't have time to get into right now, but I did have the Tilt Table Test and flat-lined in only 7 minutes! My doctor said "so you have NCS, but the meds are worse for you than actually not taking them, so just watch for your symptoms and sit or lay down." I've seen too many doctors, spent waaaaay too much money and like you, don't know where to turn. If you have any other questions maybe we should compare everything we've done or learned. Read my signature to see all my issues and I wish you luck finding a doctor who can help. Oh, I also stopped seeing my Primary Doctor because she just wanted to put me on antidepressants! And like you, I have chronic back pain. Maybe if the doctors could tell us what's wrong we wouldn't be so depressed. Hang in there.

Not sure if you are still on here since this post is pretty old. But I had to reply. I have exactly the same issues as you. I believe my NCS worsened after contracting Fifth's Disease. It's been over 4 years since I contracted Fifths, and my NCS, let alone other autoimmune issues, all showed up after this. I'm 42 and hate all these symptoms. If you're still on here, I'd love to chat more about this. Thanks, Cindy