lissy

I suggest maybe seeing a rheumatologist, I had a period of bruising and the aTTp was positive (which eventually was fine) but I found those doctors get a bit more in depth with testing.But thats all I can think of right now sorry.

Well its somewhat more than symptoms from hot weather. For me a drink feels like 5 and a few feels like 15, over sensitive more tachy and disoriented the next day it actually dehydrates you more than you already are. I once drank 5 beers about 6 months ago and had to go to the ER because my HR was 150 for 6 hours no matter what if I was laying or not...it was a scary experience and I needed fluid and they wanted to give me something to bring heartrate down and I refused and kept telling them just give me fluid IV and finally once they did it brought it down. I do have 1 drink every now and then but thats about it and only if I'm having a good day. Your body knows what you can handle you may get symptoms right away like after a few sips or after a drink but you will likely feel the effect. The weird thing is before I got severely ill I could drink sometimes like a 12 pack at 100lbs and have barely any effect LOL Its crazy. I use to have complete blackouts when I did drink sometimes wonder if I was truly passing out like from the BP getting too low. Lissy

Sorry about everything your dealing with, I also have those chest pains have had may echos and nuclear stress tests and was never told why. Everything is structurally sound I'm told, I think its hormonal because its worse with the changes of cycle and you said your pregnant right maybe that has something to do with it...? I was told before the dx of dysautonomia that it was MVP causing the pain I do have some leaky valves and its just part of it so I guess its just a guess when nothing shows up on the tests. Hope these negative feelings your having pass quickly Lissy

Hey yall:) I wash hair 3 times a week I had it cut into a short style a few months ago which was easier to style and dry I only take baths so I do that every other day sometimes when I'm having a good week I use my energy to bath daily I wear makeup about 5 times a week I had periods of not wearing it for almost the whole week at my worst and felt horrible so I try to do it daily I too have issues with holding the blow dryer up like a weakness in my arms or something??? When its the time of the month (nothing gets done regularly!) I'm a complete mess I sit alot when doing self maintenance which is helpful I get out about 3 times a week I also read about running into ppl you know I try to avoid seeing ppl I know because I am not the same and I don't want to be looked at differently or have the whole town talking about how I look so sick or weak I too have the dark circles under my eyes I always have since I was a child... I read somewhere that ppl with this condition are nice looking and sleek LOL so I guess we don't have to try to hard

Welcome I have had symptoms since I was a teen never knew what was wrong had 5 children the pregnancies always made me feel slightly better in the beginning but worse in the end and almost unbearable postpartum the last child was in 2008 and the symptoms have gotten worse with every pregnancy in my case. I'm not on any meds and have not been I have had periods of recovery and in between the 1-4 I wasn't as sick as I have been since the 5th. I guess it depends on if your willing to take the risk no-one is the same I don't know how much has been researched and compared in all of our cases I haven't been involved in a survey or research study so I don't know what the doctors base the information on. I would imagine if you have blood volume issues and have the fluctuations that happen during and after pregnancy it would be noticeable...I think that is my problem because I got worse and worse after every child. Honestly I wish I knew everything I know now I love my children but after the 1st I would probally have stopped because I am not the mother physically I intended being and it affects me everyday and also my children, its unfair. I seriously think if your able to think about having another child then maybe your capable of handling it, I knew after my 4th that my body couldn't handle anything else but IT happened and I had to pray and be as strong as I could, I think about it all the time like ;What if I didn't get pregnant would I be this sick ???probally not but I love her so much but honestly I know in my heart I would not be this sick if I didn't have my children but they are my life and they have given me purpose and so much joy.

Thats wonderful, so how long has it been since the improvement?

I think when we lay on our back it causes the BP to drop even more and presses on nerves in the back which leads to breathing discomfort . I compare it to the same as when your pregnant and your suppose to lay on your sides. Just my thought but your not alone I feel like I will pass out when I lay on my back so I never do it anymore... Lissy

Hey all, I have a genetic appointment the 24th of this month, in which I'm already looking into a family genetic condition but to anyone that knows dysautonoma causes from genetic conditions could you please let me know and possibly the name of the tests it would be so helpful. I've heard about the * one with the joints and skin??? bad brain fog sorry and mito are those tested through a genetic doctor? Thanks Lissy

I think food/water is not to pure anymore . They use no many additives, pesticides ,growth hormones, antibotics ,chemicals ,and you all have seen the factories where are food comes from right?? who knows what else is in the food heavy metals and there is not to much regulating going on....just push the food to rake in the money. I could go on and on with this topic but my voice really doesn't matter too much it will just get worse. Even organic is commericalized (is it truely organic) or just a little cleaner with a higher price? We all have some pretty wild symptoms and this has not always been a problem back in grandmas or greatgrandmas time you were allergic to peanuts fish milk/eggs maybe some fruit but thats about it. I don't know maybe extreme lol Lissy

Sorry about your experience. I have experienced it many times, and I have finally figured out either change docs or speak up and I mean speak up for real let the doc know exactly what they are saying and how its making you feel and express the disappointment in the way that they are practicing and decide to stay with them or move on but at least you gave that doctor some self-awareness and it may make them a better doctor. Even in smaller communities there are at least 5 cardiologists and chances are 1 of them would be interested in learning about *dysautonomia* and would be fully capable of handling treatment of this condition you just have to find the one willing to listen learn and care I made a mistake thinking no-one could treat or even understand this problem unless they were a specialist , thats not the case and if a doc is a very competent and they take the time to learn about their own patient and from what your doctor has said means she has no idea the extent of your issues, so I'd get the results from your monitor the actual numbers and move on to the next one but I'd go back in the 2 weeks speak your mind and get all the results and tell her she needs a refresher coarse one with dysautonomia. Lissy keep your head up you'll get to a place where you can trust whose handling your care*

Bacon causes me to become very very dizzy, thought sodium was good?...I stopped eating it Milk bad cramps and bloating ***sometimes?....I still drink it (Caffeine) any beverage with caffeine sends me into a extreme panic tachy mess...I avoid it completely --exception of chocolate***I LOVE CHOCOLATE GOTTA HAVE IT!!!!! Some snacks (donuts,peanut butter cookies)Bad stomach ache serious pain--stopped eating it Fish also causes extreme dizziness but no other allergic reactions....I stopped eating it I avoid trying anything new and I stick to what causes less problems Lissy

Yes I agree with pots being worse with viruses, and I do know I had extreme shortness of breath in the beginning of my illness that lasted about 4 months and it disappeared it has happend maybe 3 or 4 times for seconds that was the scariest feeling. The mottled look LOL I've had that ever since this began it only goes away when I lay down or if I'm extremely warm. I haven't gotten any new symptoms they have all stayed the same (besides the breathing issue) they fade and explode but are mostly always there.

Wishing you relief from this soon...I'm not too sure what could be going on with you, I just know it sounds familar to when I had postpartum cardiomyopathy( severe heart weakness)it happend after having a few of my children but can happen for other reasons. So I'd suggest maybe a echo to check EF. Lissy sends prayers to you!

Thank you both, It has stopped it lasts hours usually well the aura only 45 mins at the most. I really wonder what the trigger is today I woke up layed in bed for about an hour and boom I ate nothing and wasn't exposed to nothing. Anyway I'm glad its gone the aura is the worse for me I always worry if it will happen if I was out in public or driving, I don't drive much anyway but god what would someone do in that case pull over for an hour!!! its crazy... I mentioned it to the doc when it 1st happend they did an MRI and said my mri was normal and that was it.Maybe a specialist could offer me some options. Hopefully it doesn't happen for and 6 month:P Lissy

I have this problem and it only goes to the complete aura maybe 3 times a year but its terrifying to me. I had it today now I'm left with a throbbing head and weird weakness. Does anyone have a good treatment for this? I know I can't have migraine meds because of low B/P have you had any success with anything. Thanks Lissy

I have been thinking about this awaiting my results from my blood volume test...How many people have actually had this test??? And was that part of the testing (anemia) I'm speaking? I really hope it was because I can't find much info about causes for low blood volume I have read about anemia having something to do with it. I'm getting more and more worried I have been ill for years now and can it get worse if you have low blood volume and anemia left untreated its just kinda bizarre how would I go through remission if thats the case...??? Any extra info would be greatly appreciated.

This is kinda old post but I had a vit-d problem it was 17. I took the 50,000 units once a week 1 TIME and had weird tingling on my tounge and foot and very fast tachy shortness of breath like an extreme panic attack. So I never took it again, I was told it wouldn't get better on its own but it did in my case after a year of just being more active outside in the sun I'm talking 1hr per week and I do drink a good amount of vit-d milk it no longer is low. So I'm unsure if just not being in the sun can cause this but it was easily fixed Lissy

Reen, I started that problem when I 1st became ill and they never found a cause it eventually stopped and it comes when I feel my worse...I do not take meds or anything, I felt more stress and tense during these relapses so perhaps just the extra stress on the body can cause it I'm not too sure. I do know if scalp is dry it can cause hairloss teatree oil is suppose to help. And do you have thyroid problems??Maybe having your levels checked. Keep me posted if you find something out. Lissy

Its the running on fumes but then you deplete the fumes also. I have no second wind I never had a 1st. Wake up FATIGUE no rest can allevate I pass out to sleep at night and wake up like it never happend. I believe Our energy is coming from willpower pure mental motivation not physical energy. No matter how I explain this to anyone it seems not to be taken to seriously or viewed as extreme as it is. I just wish there was something to fix this issue... Lissy

Lieze, At the time I was taking lexapro I never knew of the HR while standing I thought it was just thought to be anxiety back then in was about 8 years ago I'd get hr racing but I didn't notice it daily but when I took the med I sware it was a drastic change in me physically. I'm just waiting to get my results back from Cleveland clinic and then I will start trying some options. Hang in there and don't isolate yourself because it makes it worse I stayed home only leaving for DR appointments for like 2 years and it was so hard to get back out there and feel half way normal.I struggle alot I barely drive alone maybe once a month I think you can't let it take over you mentally if you know what I mean, many times I try to remember myself healthy and that helps me stay focused. It will be alright

I am having a horrible afternoon during cycle or after my BP becomes "normal" but I feel absolutely dizzy beyond belief. This seems so crazy if symptoms are due to low BP you'd think if BP was normal I'd feel better its not the case!!! I have a almost 4 year and 2 1/2 year old running and chattering and I feel like I'm on a rocking boat along with massive brain fog half way outta of it...It started after I ate the same thing I ate yesterday with no problem! The only difference I ended my cycle today. My youngest voice feels like its vibrating right through my head. I can't wait for this to past Anyone way worst with normal BP ? BTW I'm not on any meds Lissy

Lieze, Sorry you had to experience this, and too add this is ME everyday its really been going on for years before they even checked my heartrate , I actually got dxed with generalized anxiety disorder and disconnective disorder but I believe it was POTS all along... Also when I 1st experienced it the doc did put me on Lexapro I'd honestly say it helped physically I could eat I had energy but the only thing about 2 weeks into taking it I laughed at everything like a euphoria and then that sideeffect stopped and I had to keep uping the dose to the max so I stopped taking it. I thought about trying it again because I felt like it was a miracile drug because it improved so much and I went from 86 lbs to 110 not because it makes you gain but every time I ate I was really potsy and felt like I was choking and very faint and that went away. I also had NO WORRIES nothing could faze me. I know with lexapro it takes at least a week to feel anything I didn't have serious reactions it made me feel great just didn't act long enough, but I probally will try again with my current more severe symptoms and issues it might really improve something. When I have to participate in out of the home activities I just fight through the whole thing I feel like just running to the car or avoiding things completely and I send my husband but I have been making myself go lately especially since my daughter will be starting pre-k next week I'm trying to prepare myself... The loud noise, lights, movement are terrible for me I freeze up mentally and physically and all I can think is god please let me make it through this sometimes I walk to a quite place and sit for 10 minutes or so. At parks and such I sit in the car alot no matter where I am and if that (bizarre) feeling comes over me I sip water put my legs up and wait for it to level out. Its awful I know especially when you have to take care of responsibilites. Keep Us posted and good luck Lissy

I have noticed that I rarely have an appetite at all and by time I eat I have waited so long I'm nauseas head achy and really don't want to eat. I am very thin 100lbs and it goes lower throughout the month and back up to 100. I don't crave anything except chocolate I'm never thirsty I think I read about the hypothalamus controlling appetite thirst and all other little functions but I did have all those blood tests with TSH,cortisol,lutenal,fsh,prolactin and of coarse they were all normal for me. I have no idea how I can gain weight when I can barely eat. Lissy

The blood volume test where they inject iodine and tracer and use a machine ( similar to a (MRI) but not as big that tracks the tracer and take alot of blood taking measurements about 2 hours . I guess the technical name is blood volume and hemodynamic tests. Lissy

Hey all, Well I had my testing you know they start with the Blood volume test 1st , with me ....and then hemo , then auto reflex and if 1st part of auto reflex is okay you can stop there. Well I didn't have to do the other parts of auto reflex he said my vessels are doing what they are suppose to , so I was happy about that but confused I asked what does that mean and he mentioned low blood volume can cause the pooling??? Does anyone know what I'm talking about can all this come from low blood volume and if so I have been searching online and cannot find much about it just finding: injury, bleeding internally shock things of that nature. So I have a few questions Does this problem have a cause? Or can it happen out of nowhere? Is there an easy treatment? Can fixing it get rid of POTS?Dysautonomia? Thanks all Lissy