Please Take A Minute To Read This, Abnormal Ttt's Not Specific For Anything!

[julieph85]

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.

[potsgirl]

Quite a few of us on the forum who have had trouble being diagnosed have ended up going to places where there are experts in the dysautonomia field, such as: Mayo Clinic (either Rochester, MN or Scottsdale, AZ), Cleveland Clinic, Vanderbilt and other doctors and places that are listed on our Home Page. I ended up going to Mayo Clinic - both the Rochester and Scottsdale locations before I was finally diagnosed. That's what I would recommend. I have a great neurologist at the Scottsdale facility - if you'd like his name, please PM me.

Ah, I just saw that you are waiting for an appointment at Vanderbilt. When are you going? Did your doctor make a referral for you? You could possibly get in faster that way. You're certainly not alone, and one of the things most of us share is that it took years before we were diagnosed. Hang in there!

[HopeSprings]

Sorry you're going through this and I know how hard it is to care for small children at the same time. I noticed you're positive for Sjogrens. I've recently learned that Sjogrens can cause autonomic neuropathy ---> dysautonomia symptoms. Have you looked into this?

[MomtoGiuliana]

I'm so sorry you are going through all of this. A lot of what you describe sounds a great deal like me postpartum. The high bp on standing, racing heart, feeling worse after eating, feeling terrible in the AM and much better in the PM.

In my case, I started feeling better after the first 10 months of my child's life. I did have bad relapses, and still do, however, overall I continue to improve.

I hope you can see a specialist who can diagnose and treat.

[julieph85]

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.

[icesktr189]

After I gave birth ( I already had POTS for 2 years by then) my bp went high for awhile, then it went back down to my normal (90/60). All my symptoms became pretty severe at 6 months PP. My daughter was born March 2010 and it has just gone back down hill again.

Pregnancy/ Birth can mess you up for awhile. Have you been prescribed anything other than the BB? Is your bp still reading high now all day long or do you have times where it goes really low?

Hang in there! With a correct diagnosis and meds yo can start getting better

[julieph85]

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.

[mwise]

A great big hug goes out to you. I am a mother of identical twin daughters that are teenagers now. I know how stressful having mutilples can be which can be contributing to making your symptoms worse. I am sorry to hear the medications you have taken previously haven't worked for you. I know that it has been trial and error for medications, diet and treatment modalities for many of us here. You really do need to get in to see someone who truly specializes in Dysautonomia. I live in Ohio and several here recommend Dr. Blair Grubb in Toledo. I follow at Cleveland Clinic and have been satisfied with Dr. Shields. Have you tried any homeopathic treatments-supplements like B vitamins, CoQ10,etc...change in diet such as gluten or dairy free or low carb? I went to a good health food store and worked with the owner to help me find good supplements to take. This may be less traumatic on your system. You are welcome to PM if you just want to talk. I can share some multiple tips and senior wisdom

[E246]

Goodness - really feel for you. You clearly have some form of dysautonomia - it does not really matter what they call it so long as someone starts to help find treatment for you. Good luck

[Maiysa]

Hi Julie, Wow, this all brought back tough memories of when I first got this. My blood pressure was very similar to yours. I noticed on an old hospital chart that mine would go up to 156/100 when standing, I went hyper instead of hypo standing up. Every now and then my blood pressure would drop extremely low, but not from standing. The doctor at the hospital told me that my blood pressure was over compensating to help me stand up. Anyhow, it took 5 more years to get diagnosed. But at the time I had an infection in my lungs and a few years later developed thyroid issues, once I had the thyroid out, some of the symptoms, mostly my heart rate and a few other got better. But I still am having some issues. I have autonomic neuropathy which they think has an autoimmune aspect. I'm not saying this is what you have, so please don't worry! But it would be good to rule it out. Anyhow, I'm glad that Naomi noticed you have autoimmune disorders since that is a key piece of information. I have had really great luck with Dr. Goodman at Mayo in Scottsdale. Not sure what area you are in, but others know of some great doctors if you are in the east. Autoimmune autonomic neuropathy is something that can go along with the antibodies you have tested positive for. There are treatments in some cases, so do your best to get to the right doctor as soon as you can. If you need to private message me, feel free. So sorry you're not feeling well. Hang in there. And you have little babies, I'm sure it's hard. Hopefully you can get to feeling well soon, that's a lot for one plate.

[TXPOTS]

Julieph85,

I haven't been on this forums in maybe over 6 months. For some odd reason, I felt compelled to pop in today, so I thought I would respond to your familiar post. The orthostatic hypertension could certainly be from deconditioning. Your body's reaction to be putting on strict bed rest is "normal". The human body is not meant to lie in bed for weeks on end. The orthostatic hypertension is a sign of a healthy autonomic nervous trying to compensate for a heart that no longer has the ability to pump blood back upstairs. It is a sign of an overactive sympathetic nervous system in response to an under active heart. One would think the changes would "reverse" themselves after you were no longer stuck on bed rest. In my experience, it took 18 months of a very intensive exercise regimen to pull out of POTS. I basically had to build an athlete's heart to pull out of this. Beta blockers are counter intuitive. They lower heart contractility, so it is no wonder they make a good percentage of POTS patients feel worse. I was extremely ill for 3 years with POTS. I have no idea what caused it. I was not deconditioned when the first symptoms hit, but I got myself out of it by graded exercise and refusing to believe that I had an irreversible, scary condition. Best of luck! It is possible to pull out of this., especially with your past history.

[HopeSprings]

TXPOTS:

Status=recovered? That's amazing. Can you post or PM me your exercise regime? I don't know if I'd be able to do it, but would love to get an idea of how much and what type of exercise got you well. Thanks.

[julieph85]

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!

[Godsgal]

Hello there....I read your whole story and it reminded me of myself.....wanting so badly to find out what was causing this mysterious life changing illness. We all know how crazy this journey is and take heart you are not alone. I know a lot of us on here have different reasons why we have POTS and you can read a lot of the causes of POTS on this site outside of the forum. That is so helpful. When I first got sick last December I went to every field of medicine, the best researched doctor I could find, and I had them test me for everything. Neurology, cardiology, electrophysiology, rheumatology, allergy/immunology, endocrinology, hematology, and probably more. Then I went to Mayo Clinic in Florida for a week and received tons of testing while there. If you have good health insurance, I would recommend seeing different fields of medicine like I did. It really worked for me. All of us on here can give you suggestions but ultimately, its up to you to research out on this site what is causing your POTS and work with various doctors. And like someone mentioned, the specialists for POTS/dysautonomia would be the best sources for help. You did mention symptoms after eating which did remind me a lot of mast cell issues. Getting your adrenal glands checked is a great thing to do for anyone that has POTS probably. You mentioned getting hot, the flushing feeling....do you get that often? How about rashes, hives, burning skin? If so, I would definitely consider researching out the mast cell aspect and how it relates to POTS. Take care and if there is anything I can help with please let me know. Have faith and keep up the courage! Keep searching for answers and you'll find them! Take care and hugs!!