lissy

I have noticed if I eat bacon full of salt!!! I feel so bad and never knew why... Haven't been DX as hyper or low flow so I don't know...

MEMORY LOL Forget what I'm saying Forget what I'm doing Forget what I just watched lastnight on television Did I wash my hair ?? while I'm still in the tub.... Once I forgot my own name while filling out papers I once forgot which side of the road to drive on Left the water running after finishing dishes 2 1/2 year old at that time had to tell me there was a waterfall in the kitchen. I feel like I have an empty POT sitting on my shoulders Its scary and funny but what can I do about it ? Lissy

POTS is that unwanted house guest that is her for the long haul.... It has taken my confidence-------to speak with confidence and a good thought pattern my weight---------------------------can not gain my spontaneous nature-------------doing anything without planning for it my memories I could be sharing with my children A tan---------------------------------Loved to lay out My clean house I would have if I had a choice The ability to work-----------------who knows where I'd be if I could have had a choice My love to travel long distances and see the world My free mind -----------------------without brain fog and fatigue Energy-------------------------------It pretty much stops everything Well thats about enough to stop anything.....

Thank you so much for replying:) I was beginning to worry ... I will keep you posted I am trying to get my GP to refer me to this Neuro I found and he has appointments available before I go to CC so maybe just maybe I can get a definite DX of Chiari. But I'm so new to this complex side of things that I don't even know how long it takes to get those result back. I know the genetics are going to be more work and alot more time, I'm working on my brothers behalf also. So I guess well see what happens. *** I have had 5 children all physically healthy and without any deformities so I have been blessed, I really just want to know for their sake in the future. Thank you sincerely for showing interest thats why I love this site!

Hi all, Growing up I always knew my brother was special he was born with 4 thumbs 2 on each hand and his ears were deformed, he was partially deaf and mild mentally handicap and recently found out he has kidney disease. And on my fathers side I was always told there were 2 other family member with some challenges also. I found out recently my father was also born without a important part of the body which I won't discuss in detail in which he had surgery at a few days old to give him one. My parents were simple people( mother was learning disabled very timid) didn't have to much information on the health history of family or even what was it called what my brother had... So the other night while having insomnia I started researching conditions just to add more knowledge for the future because i have children and would want them to know the risks and possibilities if needed. So I found this one condition called Townes-Brocks Syndrome affects 200 people in the world !!!!!which fit perfectly for my brother and even mentioned something about my fathers issue also. I read further and found chiari malformation as a Characteristic . And I was shocked I said WOW what if I have this chiari malformation causing dysautonomia . I cried and just knew this had to be my cause, so this condition that my family has is genetic. My father only got 1 characteristic , my brother has 6 , and I possibly have 1 myself. My father always said it only affects males, but from what I read it affects both sexes equally and does not skip generations it just may not show up physically or you don't get the gene like a 50/50 chance. I go to Cleveland in less than 2 weeks for my autonomic test and the doc does specialize in chiari but I thought it would be more concrete if I could have this genetic test confirmed. Which I have to even find a lab that will do that test and I'm unsure how long it will take to get results back. So I have been soooo nervous since I read this. I would really like to know if any of you have chiari malformation and if you have had the surgery?? And what information could anyone possibly share. I also wanted to share this because it might help someone else here if you have genetic conditions in your own families that can be attributed to dysautonomia. Lissy

Flares ----Relapses I guess all the same Flares are usually described in inflamation ...autoimmune affecting organs or systems that can be tested I don't really know if you can call a day here and there a "remission" does it have to last a certain amount of time??? And does a Flare or Relapse have to last a certain amount of time too??? I think we are all different, my doctor has said some days are better than others even if it seems to be gone it may come back, there is no prediction. Probally depends on the cause . My vitals are always the same no matter if its a good day or a bad (can speak in terms of weeks and months also) my vitals don't change to much always tachy when standing . So no they don't become MORE out of wack when I feel my worse. Its the symptoms and how they affect you at that time. Mine have lasted a year 1/2 not to many good days and I have had a few months thinking I was cured meaning symptomatic not vital wise. So my own personal opinion is" flares" to me ,mean= you have more symptoms And about Doctors knowing about this hopefully the ones that specialize it it do. But pretty much its all what the patient says unless they have it themselves or if the patient does have extreme changes in vitals. Lissy ****hopefully helped

In my prayers xxx Lissy

Hi, I have also noticed if I move faster I can get more done like If I speed walk around the store/house/ect. then I can accomplish more LOL but as soon as I'm doing things at a slow pace I feel horrible. I have used a roll around PC chair on my real bad days to clean up, do the dishes . My husband does the sweeping and moping and scrubbing the shower so that helps enormously. I wish I could hire someone to come in and do it, but not too many people can afford that anymore So my advice is use a chair and rest in between and don't stress over it Happy Cleaning Lissy

My answer is a big YES. I just recieved the CHANGES DVD and it actually discussed Overwhelming Fatigue , Even after DX with dysautonomia I kept searching for the reason behind the fatigue and haven't found anything else as of yet...I once had mono???? and a possible viral infection that caused postpartum cardiomyopathy but really those are just guesses for a fatigue problem . Just think if your hr is always elevated from standing maybe thats is exstausting in itself along with the other things that are being overworked in the autonomic nervous system that doctors don't even know yet... On a positive note during my times of remission I believe the fatigue is the main thing that just goes away like a light switch went off. Lissy Also nothing has helped with this problem not bedrest, activity or anything it has a mind of its own in my body.

Thank u both for your repllies and this is the best place to come and I honestly feel understood ...I know I have to stay positive and when you have a family and have those UP times it feels like your letting them down during the down time , but I do know they understand... It makes me angry that we all have to experience this condition it use to feel like pity for myself and now I just get angry and I wanna fight harder against whatever this is I wish there was more knowledge , maybe on day there will be. Since I have had weeks to months of this so called remission with only a few bad days in-between in these recent months just maybe I could have a long term remission. I just should be happy for that;) I go back to Clev.Clinic in a few weeks to do the testing and having the DX of dysautonomia already maybe the picture will become alittle clearer. I don't know what I can get from the tests ??? Keeping fingers crossed anyway thank u both again xxx Lissy

I was house bound except doctor appointments for a year 1/2 .For the past 8 months I've had a few months inbetween of nothing but days of feeling recovery and normal self. I get use to the energy lack of symptoms and really start believing that this nightmare is over and out of no-where ITS BACK and so are the feelings of being scared ,worried, panic ,and depression along with the inability to think clearly. Its like I'm becoming 2 different people the sick me and the recovered me and its becoming exstausting. I don't know how to balance it out and I don't know if I need to push myself to stay active or rest??? I was on a good roll 2 months about 80% of normal health "feeling" and I've been feeling terrible for almost a week straight now and this also happend about 6 months ago when I had a streak of 3 months good and after that I stayed symptomatic about 1 1/2 months into another good streak. I try to stay hopeful that it will pass soon but I never know ..... so I guess I'd like to know how many other experience this and how do you cope? And if you do have the relapse how bad do you feel and does it ease up from laying down? Cause what I'm feeling has no relief... Lissy

I also get this problem it feels like my body and mind are in 2 different time zones slow paced movement heaviness NO concentration....some times worse than others wish it would all just go away!!!

Hi, I look back at pictures before POTS ( well extreme POTS) and I looked so full and healthy I weighed about 120 5'3 , when I had the major episode that keeps going I'm 99 lbs and it has been staying there for a good 6 months now when I felt real bad I was down to 95 that happens maybe once a month. Years ago I dropped to 89lbs and never knew why --besides all the crazy symptoms and the feeling I'd get during and after eating. All my doctors and everyone that ever sees me says " I'm so tiny I need to gain weight but I can't ????? maybe the metabolisim is too fast or something I just wish I could gain weight . And I was told by my last cardio to gain weight could help with the symptoms so I guess I need to try harder.

Hey all, Its has been SO SO SO SO HOT this year , but its the 1st summer I've been able to be outside in 2 years ,I once got instantly dizzy from just standing in temps above 75 degrees in or outdoors but when spring came this year I noticed my tolerance was more flexible.On bad days I have to rush outdoor activities but it has improved I notice more symptoms based on humidity. Maybe one day I'll be better with the heat all together----former sun goddess:P

My B/P is usually low it ranges from 105-80 top # 80-50 bottom# I feel worse if its 105/80 ,it has gotten to 125/85 and I felt pressure in my head ??? All the doctors say its so low but it seems like I have to keep it below normal to feel the best maybe its been low so long it wouldn't be good for it to be normal... Lissy

No, I really would stand up I really don't know why it helps me I guess my increase in HR maybe increases my BP at the time . I never had my BP cuff to check while traveling. During my eposides of feeling faint it always felt like my BP was dropping and my body just had to do try anything in a state of panic to regulate it. I read something about the ear buzzing noises - I've always had this since I could remember it was like hearing electricity it comes at random, its happens often while at the doctors office while waiting it gets so loud its hard to concentrate . It only lasts 15 minutes at the most so I have never mentioned it, I thought it was an inner ear problem or something with the ANS ... I wish we had a better idea of how to handle these issues theres just so many. Lissy

I've actually had many moments like this in which I thought of just selling my car because I rarely drive. But I have been in situations where I had to keep driving I would put the window down or a/c on , sip water and if its too bad pull over get out of the car and stand up and get if off my mind. I think it has something to do with simulation and concentration and some chemical that is rushed into our systems. I have discussed w/ doctors and haven't gotten a response one suggested maybe its anxiety. Have you had this problem while not driving? Lissy

I have the aura with migraines and sometimes silent migraines. Sometimes while using the pc anything white and bright brings on a graying effect on one side of the page it spreads and goes away. In stores, and doctor offices the lighting is so intense it makes all symptoms unbearable. I wish they would dim them actually Lissy

Hello, When I had my remission if that is what its called I still had tachycardia the dizziness was more tolerable and I had less triggers. It came on one day I felt pretty much normal I had to checked my heart rate I couldn't believe how good I was feeling, it was still 120 and I just noticed not much was affecting me it lasted 2 months except during the (cycle time).Then it came right back on just like it went off going on a week 1/2 of pure misery. I hope it doesn't take another 2 years to have another remission but it really made me hopeful for the future. Lissy

Thank u all for replies. The hr is elevated the morning after and it makes it hard because usually I can lay down and it goes down to 75-80 but after I drink it stays up 120 or higher even if I lay down for it lasts most of the day. A few months ago I drank and smoked some (weed*) thinking it would some how calm my nervous system . Boy that night was so terrifying my heart was beating so hard I felt it through my whole body I told hubby to call 911 ,no matter what I did it would not slow down it took the ambulance 40 minutes to get here!!!!!!! At the ER they were all treating me like I was a junkie and taking nothing I said serious . My heart stayed at 150 for 6 hours I kept telling them to give me fluid !!!!! I told them my condition and they were clueless the doc wanted to give me something to slow my heart rate but I wouldn't allow him to because he didn't even know what dysautonomia was. They just wanted to draw my blood which I wouldn't allow them to cause I knew they would just make me weaker . Eventually the next shift came in I explained to that doctor what had happened and she just put an I.V in and said I was lucky I didn't have a heart attack keeping a high heart rate for all that time about 30 hour after them giving me the I.V heart rate was normal and I went home. I really thought I was gonna die and all the medical people around me were so incompetent that they should have been working at a circus or something... Anyway I'm glad I survived and I should have known for that experience not to try drinking again Lissy

I know I should not drink!!!! But what can I do to stop this racing while I'm laying down? I'm worried Lissy

Hi, Its kinda weird to be reading this, the exact same thing happened to me on the same day...My Family and I went out to eat and it just hit me I stuck it out I wanted to run out of the restaurant but I have a 2 and 3 year old and they were eating a ice-cream cones it seemed like forever ... I am also going through a relapse after feeling great for a few months. The only thing thats really changed that I noticed is I'm up North the weather is changing and more stimuli surrounds me its Louder , busy, humid . Hope it doesn't last long I spent 2 summers not leaving the house much so I hope it passes. Lissy

Sorry about your current issues... I had postpartum cardiomyopathy before my Pots DX heart function was 45% and they couldn't treat it because B/P was very low. At that time cardiologist suggested florinef that was before they had a clue what was going on totally with me. I didn't take any meds and eventually it did resolve in about a month, it lasted a total of 3 months. I would say it is a very complex problem to handle, but I think it can be done.Some of new mothers that had PPCM that I researched had heart transplants ***worse case scenario****but I wish you best in finding the best treatment for recovery. Lissy

This is a big problem I actually think my IQ gets cut in half ...Memory has always been an issue I can't remember alot of things sort or long term. But I will say that it lasted almost 2 years with severe symptoms seen great improvement for 2 months and currently getting pretty bad again. But during the 2 month period all cognitive skills seemed sharp. So maybe its nothing permanent going on besides the memory loss aspect of it. Lissy

Hello all, Its been a few months since I've been here and I actually thought I was getting healed in some way I still had the elevated hr upon standing and slight dizziness upon standing, brain fog, and fatigue of coarse, but over all I felt normal after a 2 year period of daily misery...It lasted 2 months . Well this is my 2nd day of feeling like the SICK me. The only thing thats really changed is the weather. Its becoming humid and I'm hoping I'm not going to decline and get back to the way I was before and I'm kinda of curious if anyone else has experenced a drastic improvement and it last a few months and it change in a instant? And if so was there anything to keep it manageable . What is this called ??? Relapse, Set back, waxing and waning??? I got better a few months ago by pushing myself at everything , and not just laying around I got out of bed in the morning at 8 instead of 11 sometimes as late as 1 . I started going to the stores and not getting in the scooters and just walked the whole way I was really amazed!!!! By time I was at the checkout my heart was pounding but I felt so proud just to make it that far... I guess I need to know is this normal? And is REST BEST during a time like this or is pushing beneficial? For those that don't remember me I haven't taken any meds in the past or present. Thanks for reading any input greatly appreciated:)