heissovereign

I have this too, mine get very hot too.. I don't know what is causing it. My face is also swollen and my varicose veins are always bulging at this time too. I hope we both get some answers soon.

I used to think it was better when it went low but now I understand that just because i feel so comfortable, I Am actually more fatigued because its too low, I start losing my motor skills at 34bpm. When it drops this low its like drifting into a coma, mine mimics a stroke and i also have temporary paralysis. I handle the higher hr better because I can lay down and possibly get it down but when its low like that and I stand most times it spikes but every so often I can stand and it stay low no matter what I do. Lol that is why they are so confused with me because my hr. Changes drastically it could spike too high when standing and cause me to faint and then while unconscious they say my heart stops temporarily kinda like sleep apnea. and my bp is just as fickle. Which is why they don't think I have pots but I don't know what else would cause part of my issues. Odd huh.. I hope the stockings help you. I know its hard with children I have two girls nine months and two years, I can imagine how it must be at your house, you are in my prayers.

Sounds like what I go through as well, and have dealt with since childhood. I understand about the blood pressure changes Your talking about, mine is the same it can be about 70/40 one min and 148/93 the next. The headaches from those changes alone are killer. but I'm serious you may really benefit from the compression stockings, it is still hard to function because my hr. Might drop below 40 and then spike to 116 or higher but it is not as bad as it was. Without them mine will to from 40-160 a 120 bpm spike and that is only standing without moving for about 5 minutes so they have helped me a bit. But only alongside my florinef and salts. I think they may at least help some, it at least helps take some of the strain off of your heart by pushing the blood back up from lower extremeties. I get mine at www.ameswalker.com and find 30-40mmhg full waist.

Kalamazoo, I am sorry you are dealing with this... Lemons is right I am new here just about a week and a half i guess and everyone is so helpful. Hang in there!! I don't have a doctor that knows what i'm talking about either, I did but he left. It can be very frustrating, I am glad you are going to Mayo, as soon as I can get insurance I am going to Vanderbilt as it is close to me ( only 4 hours) my neurologist wants to send me because he and my cardiologist really don't understand whats going on with me. and they are right it is probably the Pots, rather than panic attacks. again I am sorry you are going through this, I know it is scary and frustrating. I don't know much about this as i am still learning but you can PM me anytime and we can talk I am only 2 yrs older and have dealt with this for a very long time so we can at least pass the time talking about whatever girls our age are talking about lol, listen to the advice lemons gave and I hope you feel better, and get some answers soon...

wow, looks like how mine does. I am on florinef 0.2mg twice a day, and waist high 30-40mmhg compression stockings. I didn't think they helped anything besides my BP go up a little, because wearing them my HR would still spike about 40BPM just upon standing and being still, until I wasn't able to wear them today and i couldn't do much because it would spike just like yours, and i would be jittery my hands shake and veins hurt, and definitely out of breath. if you don't use them already, I would give them a try they are uncomfortable I won't lie but they do help some. I would give em a shot. I get mine from www.ameswalker.com, but in order to do anything they have to be 30-40mmhg and waist high. The ones i have are about $35 so very affordable. I would try them..

Lemons- I have that buzzing feeling too.. I didn't know it was relevant. I have it in my legs, feet, hands and I have trouble holding things I drop everything in my hands they did a nerve conduction test to see if I had carpal tunnel and ever since, I have that feeling in my face it will numb in certain areas and tingle. Kind of like the pins and needles in my hands and feet but the buzzing in my legs feel like a cell phone vibrating. I'm so glad we can share these things here and not be looked on as crazy. After I get my insurance I'm going to bring this up to my neurologist. Naomi how do they test for small fiber neuropathy? This is all interesting lol my life kinda makes sense now. Strange question but can these problems with the nerves be caused from excessive use of pressure points I can't explain on An open forum but I'm talking everyday sometimes multiple times mostly one right below my ear, also now if this place is accidently touched my face will freeze like I'm paralyzed for about 20 sec. I have never mentioned to docs because not something good to bring up to people. But it just got me thinking about it.

Abby, thank you I realize how bad it sounds after writing it, I have coped well with it all due to the strength I have in Christ, I used to think I was the only one with these issues as I had never met anyone with them. But being here I see that its actually common lol I don't feel so crazy anymore. Jangle- wow you are only 23! So you have been dealing with it about as long as I have. You also mentioned something about morning vomiting I didn't mention that because people think I'm bulimic when I tell the doc that but ever since about 13 I have dealt with it so I skip breakfast so all I do is heave. So strange I had no idea that was connected I just hate it. my toddler thinks its hilarious though.

Thank you for your support mrs julie, I still go in to the cardiologist every checkup (they work with me with paying monthly, they are awesome about that), and they checked potassium and all that my last visit. I am going to order thermotabs. I Am so glad I have support now. My husband tries but this is all new to him and the is trying but he doesn't understand like someone dealing with it. he is a great help though.

Well I had digestive issues from birth. But at six everything went downhill I would faint at least three times per week, hotflashes started I had them often along with RLS, floaters and was diagnosed ADD because i also couldn't concentrate, comprehend, or remember anything I had also developed respiratory issues at six and then when I started my period at 12 I developed a pituitary tumor. I continued to faint often until they put me on amitryptoline to shrink the tumor that with my add Meds I did well until I turnd 17 and had a miscarriage after a very tramautic event, after the rape and mc I started fainting again only now I had constant bradycardia and developed varicosities to my legs. I was faint free with being on meds until a yr later I fainted at work while trying to call for help my heart stopped and restarted and they said nothing after four days in hospital it took me two days to try to walk again. I fainted all the time while working after that but would resolve after a minute to two so I quit working and besides joint pain and the palps and shortness of breath and lightheadedness i did well until after my pregnancies and now here I am having all these problems at once the fainting, hotflashes,tachycardia, bradycardia, high bp, low bp chills, neuropathy in hands and feet my legs and feet turn a purplish color and my toes are blue a lot I have ibs issues as well as temp issues. I was diagnosed with NCS but haven't been tested for anythinhg else with dysautonomia. So looking back some of the signs started at birth and then progressed at 6, 12, 17, and 22. And now I am 24 and it is worst than before. Also my pregnancies are complicated usually ending in preterm labor and had three miscarriages which I believe is due to this. Sorry so long I have trouble putting things into words smaller.

Wow, Mrs. Julie Thank you so much for sharing this, very very helpful. I started fainting at six and displaying these symptoms and also was diagnosed ADD because I couldn't focus or remember anything would be too exhausted for alot of things. This explains it all lol i don't have add it's just this. and your right I do have characteristics for both NMH, and POTS. I think the reason my blood pressure did ok on the TTT 5 years ago is because I was on stratterra for ADD and birth control for hormone imbalance and amitryptoline because I had anxiety and depression issues. makes since why i did pretty good. I was being treated with the meds i needed at that time and it was helping my NCS and POTS, I am sure now i have pots as even with meds my HR spikes upon standing over 30 BPM. I am glad you shared this now i have something to show my parents as they don't believe i have an illness, they think this has all been for attention, i try to ask them what would i gain that would make the last 18 years of my life that was miserable to be making this up but alas, at least my husband and church family understand me. Thank you so much this was a tremendous help.

Thanks Ramakentesh, My cardio mentioned trying me on midodrine alongside florinef if I need it this next month when I go back. so I guess we will see. now what is neurally mediated hypotension? is it the same as NCS and vasal vagal syncope? does it cause the problems with wacky Hr or just BP? because when I wasn't on anything My Hr was alot worst than it is now I could be sitting and it be 40 then stand and it jump to over 100 and steadily climb but good thing is my highest is 180 and thats cleaning house. do you know much about MVPS/D?

Thank you Mrs. Julie, I am on 0.1 mg twice daily, I have a problem with fluids but am trying hard to keep them up. I did prettyw ell today I just can't eat well when I get all of my fluids, i am trying to eat more salt I do see it helping some because it used to be really bad. I am worn out and always weak but I see my vitals are getting somewhat better. I also wear waist high compression stockings as well so that really works. as soon as I get this insurance I am going straight in for testing since my Neurologist wants to send me so I am hopeful for some answers finally. Thank you so much for taking the time to help me. I think your right but In any case the med I am on I have heard great things about so no matter what i have this should help.. Thanks!!! Sheena

I'm glad I brought it up for you to see...

I know, my doctor didn't even tell me about my valve regurgitation. i found it all in my records that i requested. I talked to his nurse on the phone about it but they don't know much about dysautonomia but she did say that the test they did showed the regurgitation in 3 of my valves, lol I thought well I would think that would be causing alot of my problems since my ANS is out of whack. . But I have all the minor symptoms and some of the major symptoms. it explains alot to me. I have been trying to find more on it, but yea it causes problems with thirst, temp issues, digestion, just about all of the things with dysautonomia besides the BP and Hr. even the muscle pain I have dealt with all my life. I wish I could get more out of a doctor about this, but I guess I gotta be patient..

Thank you macksmom, My primary suspected it first due to all my issues and my fingers and toes were blue in her office. But she sent me to a cardiologist and he diagnosed me. But then he left and another one took over my files. and he doesn't know much about dysautonomia but at least kept me on the Florinef that my other doctor prescribed. I am trying to get insurance as they have all turned me down because i have so many preexisting illnesses, so that I can go to vanderbilt, my neurologist wants me to go there for testing. So just waiting on insurance. and I really don't mind your questions it is the only way you can help.. Iw as also diagnosed with vasal vagal syncope as a teen but they didn't explain it and my parents or i didnt research it because someone said it was no big deal. I used to faint constantly i was homeschooled and couldn't really do much I had to quit working after i got married because i was running up the hospital bills from hitting my head and my heart would stop and start again when i fell ( according to my bosses) I would quit breathing and my pulse was 30. this happened just last week as well. any questions or comments are welcomed.. I can't get much healthcare because we pay out of pocket for my cardiologist and he's not the greatest. (not his fault he just doesn't understand dysautonomia) so I thank you!!

I'm with you naomi, I strive for more than I did the day before. I just get too nauseous. but i try to at least get 30 oz. definitely not enough but I can't help it. I am trying!!! I always feel like i just drank and so I don't feel like I need it. But I know this is why I'm not doing very well. it's a double edged sword. my doctor told me the other day at least 3 liters. So let's do this!!

this is where I saw it, I found this here http://www.mitralvalveprolapse.com/articlesfromnewsletter.html The MVPS is a dysautonomia I am waiting on a doctor but i have been looking this over as well as some other websites about it and this explains my entire life, only my anxiety/depression issues aren't as severe as some of these. they used to be though... terrible terrible time. that paired with my regurgitation then this diagnosis makes more sense with all the other issues i have. check the link out along with this link ( this is the symptoms) http://www.mitralvalveprolapse.com/symptoms.html Another piece to the MVPS/D puzzle is the importance of high fluid intake. People with MVPS/D seem to have a faulty thirst mechanism that makes them even less thirsty than the average person. Do you go all morning without drinking anything? The healthy approach is to sip liquids all day. Try a sport bottle with a straw. Keep it full and drink all day. If this is not convenient, drink a large glass of water with breakfast, at midmorning, lunch, midafternoon, dinner, and after dinner.

hmm, interesting.. I don't know.. I know that they say with MVPS it is common to never be thirsty so it could be just a part of dysautonomia.

Hello all, When I was diagnosed with dysautonomia they said I had NCS. I logged my BP and HR yesterday 4 times. Supine - 119/61 Hr- 40 (8am) standing- 85/48 Hr- 85 Supine- 126/62 Hr- 42 (12pm) standing- 89/55 Hr- 83 Supine- 109/61 Hr- 56 (4:30p) Standing- 88/53 Hr- 88 Supine- 97/53 Hr- 50 (9:30p) standing- 86/52 Hr- 86 So i understand that with NCS you faint because when you stand your BP and HR drop. Except my Hr is spiking anywhere from 32 bpm- 45 bpm upon standing. I did it today at 8am and 12p just to check to see if it was the same and it was. So my BP is dropping but my Hr is raising, and I read it can't be POTS if it drops more than 20/10 which on more than one occasion mine does, more on the SYS than the DIA. and with NCS your Hr is supposed to drop with your Bp when standing, and mine doesn't my Hr raises and BP decreases. so what is this? oh and ETA- this is a good day, before starting Florinef, salt, fluid, and waist high compression stockings my HR would go from 40bpm sitting to 116bpm upon standing and steadily climb so it has brought it down some. I know there are many types of dysautonomias but the only one I have found that does this is PAF but i'm not going there until I get insurance and a doc tells me that. but I would like your take on this if no one minds. i also was told I have SVT along with CVI and a bunch of stomach and temp and other issues if that helps.. another thing is that sometimes when i sit my Hr will drop to 40, but then there are times i could be sitting nothing bothering me and not watching anything stimulating or anything and my Hr jump to 95, and then there are times like once last nite i was sitting and my hr was 48 i stood up and it stayed at 48 no matter what i did to try to get it to go up it wouldn't so i just went to bed. so lol I have a Hr that just does whatever it wants- may be too low or too high sitting or standing. lol so any insight. and don't worry i am not just self diagnosing I just don't know when or if this insurance is going to be approved, and I would like to understand this a little better and i see there are some very well researched people on here. (some of you have already helped me some) so thank you bunches

Naomi, i don't know as much as you all on this but you mentioned to Bren about faulty hypothalmus or pituitary. I had a pituitary tumor as a kid that was treated with amitryptoline to shrink it, last seen on scan it was gone. I wonder if it could have caused part of it...

The only time I go is when I have my spells where i faint and stop breathing, mostly because my husband can't help me and I just wake up in the ambulance after having oxygen. I usually need oxygen and saline and they test me, tell me dysautonomia and send me home.. Me and hubby try to just stay home unless that happens. mostly because I am unconscious and not breathing. They haven't explained this one yet.. I wish I could just go sometimes and get saline because I get so nauseous with drinking on my own.

also I saw in your signature, you were dx'd in 2008 but started symptoms at about 5 yrs old? i started fainting at age 6 and was just diagnosed april 2011 with NCS, 18 years of fainting and they finally put a name on it I am waiting on some insurance so I can be tested, because i have symptoms of POTS as well. heck, like most of us my whole body is messed up.

I know I have always found that to be odd with me, because i have to work very hard to keep from being dehydrated but don't get thirsty either. I wonder why those of us who don't get thirsty get nauseated from drinking? that is very strange..

frugalmama- fluids make me nauseated as well, but have to have em so it's just a viscious cycle.. thank you for your response. Naomi- My doctor doesn't talk to me about anything with the regurgitation or anything, I am uninsured so they don't like to help me much even though i pay my bills!!! anyways.. i just happened to find it in my records and decided to research it and I found MVPS/D and I have all of these problems.. everytime i have trouble with my HR and BP everything else acts up too. I am really just grasping at straws until i can get this insurance and a doctor that will take me seriously, lol he did the poor mans TTT with my compression stockings and me on my meds and said oh your fine and then my BP dropped after a minute and he said well you did drop some but it's not bad, and lol he's the one who told me to wear the stockings and he asked me if i ever thought of wearing them i was like what, your the one who told me to wear them the day i come in... hmm.. yea so he hasn't done the testing without my stockings and meds. but i have here and it is a 40bpm raise in HR and 30 decrease in my sys BP, and 10-15 drop in dia. but the stockings, fluids, salt, and florinef seem to help some. ok so i'm done with my info lol sorry... I am just so frustrated without knowing what is all wrong with me, i am 24 and this has been going on all my life i need some answers... thank you for listening BTW your baby is so cute, how old? I have two girls 2 yrs and nine months old. Bren- Thank you, that is very interesting. I have had this problem my entire life too, lol I always thought it was funny, my doctors used to always say they couldn't find anything wrong but knew i wasn't textbook and my body was just messed up... they need to figure this stuff out, we can't do it all

puppylove- lol MVPS/D is mitral valve prolapse syndrome / dysautonomia.. and lol the regurgitation is in the heart valves... I found it while researching. I am glad to know i'm not the only one though that has trouble drinking. thanks for responding ramakentesh- Thanks for responding... I have to force myself, but I feel so much better when i do. it's just with two little ones I forget so easily... I hate that when i do drink it goes right through though.