julieph85

Katy, dr.'s can also check for DI by doing a urinalysis and checking the osmality and potassium. People with DI usually have very low urine potassium. The florinef could also be causing your symptoms because it effects your adh. Is your urine any darker in the first morning pee? If that urine isn't clear that would be a good indicator that it is likely not DI because if you have DI all your urines are clear and you even urinate clear urine throughout the night when your not drinking. I definitely think you should be checked though and talk to your doctor about the florinef.

this exact same thing has been happening to me for a month. It is weird because like you said it is related to my eye movement. If I look up or down at someone even while sitting I get very dizzy suddenly. I also have been having odd pain in my facial muscles and pain in my temples with pressure in my ears. Have you had any pain also?

No doctor is yet to confirm this but my personal belief is that it has something to do with vagal tone. In the mornings your vagal tone is greatly reduced which means you are running primarily off of your sympathetic nervous system. As the day goes on you become more and more vagal and by evening/night your vagal tone is high which means your mostly running off of your parasympathetic nervous system. I believe the increase in acetycholine is slowing our heart rates and reducing the sympathetic overshoot when standing. This does not explain however why sometimes the vagal tone is OVER exaggerated and I get bradychardia. I believe this dirunal pattern is a clear clue to what is causing our orthostatic intolerance in the people who experience this phenomenon. I believe it has something to do with overactivity or oversensitivity to the sympathetic nervous system. Ever since I have had these problems I've noticed that any time my SNS is activated I have a waaay over dramatic reaction to it. Even a slight startle will cause my heart to race and pound. Even something has simple as a sudden noise at work or the lights flickering. I believe this is a clue to our disease if you experience the hyper form of pots....I wish doctors would study this dirunal phenomenon more..

i just experienced that for the first time yesterday... not fun!

have you been tested for Diabetes Insipidus? It causes the exact symptoms you are describing. There is definitely something going on with your ADH, it sounds low.

I have sjogren's anitbodies, my rheumy said it is secondary to my RA. Is there a link between sjogren's and dysautonomia? No doc has ever told me that before....I should add my sjogrens antibodies are low positive so it's not very active. My dysautonomia is very active so i find it hard to think the dysautonomia is related to the sjogrens.Interesting note- I never had positive sjogrens antibodies till i had the dysautonomia. I also never had a positive ANA til i had the the dysautonomia and when my sypmtoms subsided last year my ANA became negative again.... very interesting!

A wonderful person on this forum gave me the name of Dr. G at Mayo clinic in Scottsdale and I was able to get an appt for January 3rd! I am so thankful as I have gone 2 years without a diagnosis and told i can't get into vanderbilt till May. I was hoping others who have been diagnosed there and maybe by him could share with me their experiences? How long was your visit and did they do testing right away? i'm nervous because i'm coming from across the country so I would need to get everything done in one visit. Thank you!!!

when you say "headrush" do you mean pressure? I get pressure exactly like you are describing which is followed by tachycardia. My neuro said it was presyncope. I believe presyncope can be subjective and the feeling varies between people. if it happens when you get out of the shower i would definitely think that is what it is because the heat lowers your bp.

I have a hyper form of dysautonomia (orthostatic hypertension) and slightly elevated BP when sitting up. My BP is especially high in the morning. I also experience hypotension when laying down especially at night. I've noticed that in the evenings my symptoms are greatly reduced and my pulse is slower. However, occasionally I will experience pronounced bradychardia in the evenings with pulse in the 50's. When that is happening i will feel very sedated but will have NO orthostatic intolerance! Does anyone experience these dramatic reductions in heart rate in the evenings? I told my neuro about it and he said it must be a cardiac issue. I told my cardiologist that and he said yeah right, my heart is fine. So once again, no answers.

katybug- do you see anyone in Baltimore for your dysautonomia? I'm also in Baltimore and see Khurana. He doesn't know anything about Mast cell issues and i have not had a good experience with him.

My pots starting flaring up again in July and i've just been getting progressively worse since. During this time i have noticed that i'm becoming more and more sensitive to alcohol. I'm a bit of a wino and like to drink a glass or two at night with dinner. I've noticed that when my dysautonomia is flaring I get drunk VERY fast and have weird reactions from even a small amount of alcohol. It doesn't make my orthostatic symptoms worse but it makes my face flush when i've stopped drinking (it's not from the sulfites because it happens no matter what kind of alcohol it is) and makes me SOOOOOO thirsty the next day. I know it is normal to be thirsty after drinking alcohol becuase it is dehydrating but i mean thirsty like i've never been in my life. I had a few extra glasses a couple weeks ago at a bday party and i was the most thirsty i've ever been in my life and my eyes were extrememly dry to the point they became severely blood shot. My thirst and dry eyes got so bad I went to a dr. and they said I was NOT dehydrated because my urine was clear and i was going a lot. It finally went away after 4 days like that. This made me think a lot about the renin/angiotensin system and what could be wrong with it in people like us. Alcohol blocks the effects of ADH which is why it is dehydrating. My thinking is why was mine so severe for 4 days? I feel like i am so over sensitive to alcohol when i'm in a flair.... does anyone get this too?

In reference to your headache- I have had headaches in my temples for the last 3 weeks. It has been so weird and i've never had anything like it. It feels just like you describe, likes it coming from a vein there.

For the last 3 weeks everytime I try to fall asleep while laying down I will suddenly get an intense wave of pressure in my chest and head. While it's happening I can feel and hear my heart beating in my ears. I have taken my BP while this is happening and it high. This also the same pressure feeling I get in my head and chest when I first stand up but this is much more intense. At first I thought this was anxiety but it keeps happening every night and I have noticed that when it happens my heart does not beat any faster but beats harder, i also noticed when it is happening I can feel my pulse all over my body. I cannot imagine what is causing these sudden surges in BP and heart contractility but it is scaring the crap out of me because ever since it started I have had headaches every single day and severe dizziness even while i'm sitting. I'm worried there is something wrong with the vessels in my head. Does anyone else experience this?

TXPOTS- everything you said I have been thinking all this time. Since it has been two years since the bedrest doctors keep telling me there is no way it is linked to the bedrest because I would be better by now but all this started at the end of that period so in my opionion that is too much of a coincidence! I have also been thinking myself that the reason the Beta blockers made me so sick was because it was diminishing my body's natural defense mechanism to low stroke volume when standing. I feel like a lot of doctors try to treat the symptoms- lowering the sympathetic nervous system then treat the cause, which I believe in my case can be either the denervation of vessels in my legs or just plain old low cardiac output because of a deconditioned heart. It makes me feel better to talk to someone who shares the same opionions, thanks!

Dani- thanks for your reply. The things i've tried so far are Labetalol, Metropolol, and Xanax. Nothing has helped and the Metropolol made me worse. My BP is borderline high in the mornings and afternoon's (130's/upper 80's) when sitting and goes even higher when standing. In the evening my BP is normal to low when sitting and goes up borderline high when standing. Anytime of day my BP will go very low when laying down. At night this even worse sometimes going as low as 90/50. I fear taking drugs that would lower my BP and heartrate because of how low my BP gets when I lay down and in the evening/night. When I was on Labetalol my BP would sometimes get as low as 70/40 when laying down and my pulse would go into the upper 40's which would make me very feel very sick.

Thank you all for your responses. Naomi- I have read a little about that but my sjogrens antibodies are very low so my rheumatologist thinks it is unrelated. I also don't even have any symptoms of the sjogrens such as dry mouth or eyes but I still think there is a connection to my autoimmune disorders.

I have noticed since i've been sick with whatever this is that my orthostatic symptoms are much more severe when i'm hungry. I have tried testing my blood sugar to see if i'm hypoglycemic during this time and it within normal range. I cannot understand why even being a little bit hungry makes my orthostatic hypertension and tach. so much worse? No doctors have given an explanation for this.... Just wondering if others experience this... thanks!

Since I have had dysautonomia I have experienced the same thing. I have ZERO tolerance for anything stressful and I cry over everything. I feel like any little thing is going to send me over the edge. I absolutely believe that it is related to the dysautonomia and the adrenline system. I think we are all in a state of hightened arousal that damages our coping abilities.

This is my first post and I promise it will be my last so long-winded! Please take a minute to read this and listen to my story. I feel so alone because according to the ONLY neurologist in Maryland that studies dysautonomia, Dr. Khurana, I don't meet the diagnosis of ANY type of POTS but I am so sick. I would love to hear from anyone that has had similar symptomology or a similar weird TTT. My issues started at the end of my awful pregnancy in 2009 with my identical twin daughters. I was put on strict bedrest at 21 weeks for early effacing of my cervix. When I say strict, I mean STRICT. I was only allowed to stand up twice a day to use the bathroom and shower twice a week. I layed on my left side in bed for 14 weeks straight. I NEVER had any dysautonomic symptoms in my life until the end of that bedrest period. At about 10 weeks into my bedrest I started noticing that when I got up to use the bathroom or shower my heart would race and it would feel hard to breath. I also would get extremely lightheaded. At the last week of my pregnancy I developed very high blood pressure when standing or sitting up. I had my c-section a week later. During my last night in the hospital I woke up and the room was spinning and I felt extremely lightheaded, I then noticed that my heart was racing what felt like 200 beats per minute. These episodes continued every night for the next 6 months. I would wake up suddenly (always about the first 30 to 45 minutes into my sleep) with the room spinning and my heart racing (cardiologist tracked it on the monitor racing as fast as 180 beats per minute). The Dr. said it is sinus tach. That basically means it is a normal rhythm but it is just too fast and is caused by an adrenaline rush. This still happens sometimes out of the blue but thankfully does not happen as much. A week after I delivered my blood pressure shot way up (165/110) and stayed up whether I was laying or standing. They said it was pre-eclamptic and put my on Labetalol. That got my pressures down but did not help my orthostatic hypertension, heart racing, or dizziness. I was so sick for months after I delivered that I could barely stand to change my daughters diapers. The worst symptom besides the tachycardia and dizziness was the shortness of breath. All this time I was experiencing orthostatic hypertension, not hypotension. The cardiologist tried a beta blocker after enduring this for a few months. It helped the night time adrenaline surges but made the daytime orthostatic symptoms HORRENDOUS. It was so bad anytime I tried to lift my arms above my head or bend over to pick up my babies my heart would race up to 150 bpm and I felt like I was going to pass out. They took me off the beta blocker and I gradually improved. For the next year my symptoms were much better and I usually only had symptoms in the morning. The Dr.'s said my dysautonomia was likely caused by the deconditioning and would go away with time and not come back. WRONG. Starting last July I started getting periods of dizziness and the adrenaline surges at night became more frequent. Currently my symptoms are almost as severe as they were after I had my children. What I'm experiencing currently: My symptoms are very dirunal. They are awful in the mornings and are markedly better at night. In the mornings I cannot stand for long at all. My blood pressure goes way up when I stand, it feels hard to breath, my heart races, the room spins, and my hands turn cold and sweaty. This gets better when I sit or lay. However, for the last 3 weeks I am still dizzy when I sit down and I have had horrible headaches every single day. I also have almost fainted 4 times in the last three weeks, each time was when I was sitting down, not standing. I also experience strange symptoms after I eat. Again, this only happens with breakfast and lunch, hardly ever with dinner. About 20 minutes after I eat my skin feels very hot on my face and upper back and my heart increases about 30 bpm and I feel very jittery. This last about 40 minutes and then I feel extremely tired and thirsty afterwards. I also have episodes in the evening where my heart beats extrememly slow (in the 50's) and I feel very lethargic. When I am experiencing the slow heart rate in the evening I have zero orthostatic symptoms and feel almost normal except for the lethargy. I also feel very confused all the time, almost like i'm in a daze. I drank a few glasses of wine the other weekend at a birthday party. I experienced the most extreme thirst and dry eyes for 4 days afterwards. I was drinking gallons of water and gatorade but nothing helped the extreme thirst. I even went to the doctor and they said I was absolutely not dehydrated because I was urinating frequently and it was very clear. I believe this thirst and dry eyes was due to hypovolemia from the alcohol so I salt loaded for a day. My symptoms were gone the next day. MY TTT's: I've had 3 tilt table tests over the last 3 years. Every one has come back the same: My heart rate and bloodpressure drop when I first stand up then immeadiatly rise to in the 130's and my bp about 140's/90's. This last about a minute then drops back into a normal range. If I remain standing it will shoot back up,last for about a minute, and then go back down. This will go on and on for as long as i'm standing. Certain things will also trigger the rise and symptoms such as talking when i'm standing. Talking! Talking when I'm standing will actually make my heart and bp shoot up and make me feel like I can't breath. I have also noticed that drinking even small amounts of a fluid in the mornings will trigger the same reaction after I swallow. If I try to take a deep breath the same fall and then dramatic rise in heart rate and bp will also happen right after I exhale. The neurologist has tested my baroreflex and accoring to him it is normal. The reason I wrote this: Every doctor says I don't meet the definition for POTS because my heart rate and bp go up AND down when I'm standing instead of staying elevated. They say what's happening to me is not normal but they have NO idea what is causing it. They say it is some "variant" of POTS but offer me no explanation for the slow heart rate at night and the way my symptoms are so variable depending on the time of day. I am so desperate for a diagnosis. I have missed out on the first two years of my daughters lives because i'm not present. I'm here physically, but so sick and so irritable and so scared about what is causing this that i'm not really there for them. I'm living in a nightmare I can't wake up from and there is NO doctor that can help me. THANKYOU so much for taking a few minutes to read this long post. The people on this forum are the only ones that have even a chance of understanding how I feel. Having these symptoms isolates you more than anything I could imagine because we don't look sick. Please any words of understanding or insight would help me immensley.