Newly diagnosed

[dannyg]

I can't do much today so I would like to share my experience if I may.

I'm 54 years old, been retired 7 years and was always healthy. I drank, but was in good health. Not 1 problem, not on any medications. 

Back in November 2 weeks before Thanksgiving, I felt funny and a little lower abdominal tenderness. I went to the doctor for my yearly check up. He gave me Ciprofloxin to take for 10 days and sent me for my blood test. He checked my blood pressure and said "its a little high", come back in a week. 1 week later I went back, he said my blood test is perfect, everything is normal EXCEPT my white blood cells were at the upper limit of 11. Thats from the bladder infection he said. He checked my blood pressure again, said it was 145/100, come back the end of January, stay off the salt, and he will check it again.

Thanksgiving, I made dinner, had 3 drinks, and just didn't feel right. I went to bed, and about an hour later I woke up and was like "nervous". It was a funny feeling like an Anxiety attack. Never had any before, never felt that feeling. After an hour or so, I went back to bed cause it went away.  The next day I felt strange. Like I had a bad hangover after only having 3 drinks. I was feeling very light headed and not myself. At night I felt better and everything was ok for about 3 days so a had 1 drink. I didn't feel right after that and it felt like I had about 20 drinks. I was light headed, and my ears were ringing. I went to bed that night, was kind of restless, just felt "anxious" and didnt know why. As I fell asleep I felt funny like someone pushed me from behind, then I felt very warm, then like an anxiety attack again. I was scared and couldn't sleep. I did finally go back to bed.

The next few days I would get up, come downstairs, and after about 15 minutes I would get "light headed" and my ears would ring the rest of the day. This happened for about the next 5 days. I went to see my doctor, he wasnt in he had an out of town emergency. I was driving home, felt real strange, so I went to the emergency room. They kept me for 2 days under observation. Everything came back normal. They did an MRI, ECHO test, and had me in bed with a heart monitor on. A neurologist came in and said Im ok nothing is wrong. Before that a Therapist came in and checked me for "Vertigo". She said I dont have it, whatever is causing me to be light headed is medical, not Vertigo. The cardiologist told me to go for Vestibular Therapy. I decided to go. The therapist did some testing, and said she cant help me cause its a medical thing causing my problem, mot Vertigo.

A few days after that on December 21st, I woke up with that "panic attack" again, so at 2am I called my neighbor. I couldnt stop shaking. He took me to a different hospital. All my signs were good, everything was normal. They admitted me for 2 days. A different heart doctor sent me for an ECHO test. I passed the test. The nuclear ECHO test. He was showing me my heart monitor they had me on, and said nothing is wrong. All is perfect. Maybe see a neurologist. Before I left, the nurse that was signing me out told me that when Im sleeping, my pulse is about 50, when I woke up at 3am it jumped to about 95 and that it might be an SVT. I didnt pay much attention because the heart doctor said I passed the Stress Test. I was still with this "lighteaded" feeling all the time. I had a bad feeling a few days later so I went to see my family doctor. He checks my blood pressure and tells me Im ok and to see my heart doctor.

I came home, went to bed, and it happened again. I woke up, felt funny, and when I went to the bathroom my legs felt like they had lead weights on them. I fell asleep, next morning I was light headed, and my ears were ringing.  I went back to my family doctor, he sent me to get a Holter Monitor. That was late on a friday so I had to wait until Monday New Years Eve to get it. I went back Monday, haven't ate, didn't sleep cause I had another "episode" of feeling "Anxious" that night. I slept about an hour.  They looked at me and told me to go to the emergency room. I went, laid there 4 hours while they did a blood test, and nothing came back. The let me go. I went down to get the monitor, she gave me the one for 9 days that sends information right away to them. That night, I went to bed, and woke up 3 times with bad palpitations every time.

Wednesday January 2nd, I woke up didnt feel to bad. About an hour later, I felt light headed. I sat down, took my blood pressure, and it was normal, and my pulse was about 92. I got up to wash some dishes to try and to shake it off. I stood there and decided to check my pulse, and it was 154. I panicked and went back to the hospital. I asked a nurse about it being POTS, and she just got smart and told me "stay off the internet, thats happening because I smoke". I was so mad. The doctor came in, I told her, and I stook up, and my pulse went to 128. Right then my heart doctor came in and seen it. He just said "now we got it, we see what the problem is". They admitted me for observation, and they were going to do a Tilt Table Test. I laid there for 3 days waiting, and in the end didnt get it because the straps or something broke on the table, and they couldn't fix it. A nurologist did come in and check me, and said I have POTS. He told me to make an appointment with an Electrocardiologist, and last night, at 7pm. they sent me home.

The night I was in there, the cardio doctor gave me I think Metroprolol. It got rid of my Palpitations, and I felt a little better. I came home, driving light headed, and slept good last night. I woke up 2 times, but thats better than the 1 hour sleep I had in 3 days. Today he switched me to that  fludrocortisone cause he wants to keep my blood pressure up, but its making me feel strange again. I woke up the last 3 days feeling worse than the day before, and more light headed.

Thank you everyone for listening to me. I dont know what the nest step is for me, or if I can live by myself and manage this. I have family that lives across the street, but I dont want to be bed ridden all the time. Maybe as time goes on, i will learn what to expect, and my limits of what I can and cant do and just have to adjust to it. 

Thank you everyone for listening to me.

[Guest ScottS]

You're putting a lot out there all at once. Understand, I'm not criticizing. Given all that you've been through it (the need to vent) is to be expected.  A couple of thoughts. 1. I'm surprised your doctor(s) diagnosed you with POTS without a completed tilt table test. TTT's aren't foolproof but they still are generally regarded as useful, if only because they help establish a baseline for further examination and study. 2. If you do have some form of dysautonomia (POTS or otherwise), you really should stop consuming alcohol. 3. Do you smoke? (...and she just got smart and told me "stay off the internet, thats happening because I smoke") If so, you really do need to stop. (Remember, every puff you take in is not only full of toxins and poisons, but one less healthy breath of air your heart, lungs, brain, entire body requires to stay alive.

It's a good thing that you are reaching out to others. Hang in there.

 

[dannyg]

No ! Lol ! Havent drank in weeks. Never again. I will go and get the TTT this week ASAP. Afraid though since today has been really bad for me. Laying around all day.  Seems the last 2 days I been really having a hard time. Went to pick up that medication and couldnt wait to get home. I sat by the table and pulse was 105, felt like it was 150. The smoking .... I know, I been so stressed and worried dumb me makes it worse by sitting around thinking and smoking. 

 

[MomtoGiuliana]

A TTT may not be necessarily needed to diagnose POTS.  My sister was diagnosed with POTS by a cardiologist without a TTT, but based on symptoms and orthostatics (changes in bp and hr from lying to standing).  I think most important is to see a specialist who can determine if a TTT is needed still, and ensure you are on the best treatment which may take some time.

Consuming alcohol could make your symptoms worse--this is the case for many POTS patients.  Not sure if smoking will make POTS worse, but it's definitely not a healthy habit -- hopefully you can stop, although with what you are going through now that could be especially tough.

Has anyone mentioned hydration to you?  Most POTS patients feel better if they keep well hydrated -- either with electrolyte drinks of some sort, or saline IV.  Were you given IV saline in the hospital and did you notice feeling better afterwards (at least for a short time)?  Most POTS patients also feel better with extra salt but you should talk to your specialist about this if your blood pressure is high.

Beta blockers and fludrocortisone are typical POTS treatments.  It still may take some time before you start to feel better again.

 

[StayAtHomeMom]

I want to start with congratulations. You got your diagnosis very quickly!! You noticed your HR a lot quicker than I ever did. It took me 9 months to notice it. 

Personally I take metoprolol and midodrine. Metoperlol is amazing for HR and heart palpitations. My midodrine helps with other symptoms. See if they would let you try that instead of the fludocortisone they have you trying. Midodrine helps up BP by vasoconstriction. I get tingling scalp from it but it is not keeping me from taking it. 

I would advise looking for triggers. Certain things you do or eat that triggers an "attack". Like I can't do anything or my head. If I have my hands over my head for more than a minute I have an attack that lasts for at least 30 minutes. 

Again congrats on such a quick diagnosis. It sounds like you have found good doctors. 

[Guest ScottS]

4 hours ago, dannyg said:

No ! Lol ! Havent drank in weeks. Never again. I will go and get the TTT this week ASAP. Afraid though since today has been really bad for me. Laying around all day.  Seems the last 2 days I been really having a hard time. Went to pick up that medication and couldnt wait to get home. I sat by the table and pulse was 105, felt like it was 150. The smoking .... I know, I been so stressed and worried dumb me makes it worse by sitting around thinking and smoking. 

 

I've been there ("really having a hard time"). It does get better. You will get better (over time). A few helpful hints. Yes, keeping yourself hydrated is important. I drink 32 ounces of water first thing in the morning, even before I get all the way out of bed. (I've found sitting up on the edge of the bed for 5-10 minutes after waking is a good start to my day.) I'll then drink 32 more ounces of water by 10:00 AM and an additional 64 (often plus) ounces by day's end. I'm not on any POTS medication and generally do fine via (again) staying hydrated and eating well and smartly. (POTS can ravage my gut if I don't). On average, I'd say I consume somewhere between 3 and 3.5 grams of salt daily. I exercise regularly. I also regularly wear full leg length compression sleeves, compression shorts and socks. When I teach my yoga classes I dispense with the socks and instead wear additional ankle to knee length compression sleeves. Without the compression garments I sometimes get to feeling POTSIE (dizzy, disoriented, sometimes nauseated) due, no doubt, to the many regular up and down movements one does in a yoga class. POTS has made my body highly heat and cold intolerant, so I try to be smart and dress accordingly. I take showers in a shower chair. I also have a second form of (as yet unknown or at least poorly understood) dysautonomia that affects my vision. A bright light shining into my eyes at a certain angle (curiously, not directly on) will sometimes temporarily blind me. So I often wear dark sunglasses, even indoors.

I recall my tilt table test. I was already certain I had POTS and my cardiologist more or less agreed, but he wanted to see for himself what exactly was going on. I passed out about half the way through and woke up with sweat literally gushing out of me. It was rough. Hopefully yours isn't!

[dannyg]

My Heart Doctor did tell me right away when he looked at the pulse rate he knows about and has patients with POTS. 1st thing he said was drink plenty of water, no caffeine, coffee, pop, put salt on everything. Get my blood pressure up, that lowers the pulse. Strange thing is about 3 weeks ago, I noticed I was getting more thirsty and my mouth was getting dry faster than usual. This was before they knew I might have POTS. My blood pressure I always checked even before this happened. It was always pretty stable. Always around 135/90. Back in November when I went and he told me it was high, I though he was wrong. I checked it when I came home, it was 125/80. 2 hours later I checked it after relaxing, it was 155/98. I thought my monitor was bad. It never fluctuated like that.

They never did give me any IV in the hospital the 3 days I was in there. They basically had the needle for an IV in my hand all that time while I just laid there waiting for them to fix the TT. I hate that. 1st thing they do before they do anything in a hospital is put that needle in you. They couldn't fix the table so they told me to call back during the week and get it done. Reading about it I'm scared. I never passed out and don't want to just in case. I'm new to this but I'm also thinking that if they already know I'm having my Pulse do this, why do the test to confirm what they already know and I know. I definitely will see the Electrocardiologistlogist so he can get exactly whats going on and maybe he can have a better idea what medicine might work so I'm not having to "experiment" with some and going through bad side effects before I realize and tell my heart doctor "this one don't help, it's making my symptoms worse". I like him, but problem is he is only in once a week near me. 

I need to readjust myself and one thing I noticed is, when I get light headed, I can calm myself down and sit and be ok. I sat by the kitchen table earlier, felt terrible and had felt that "anxiety" thing wanting to act up so I checked my Pulse. It was 105. I was like "what the heck, why do I feel bad and its not my pressure or Pulse that high". I sat on the couch and felt my heart pounding. The Palpitations are whats giving me that "feeling", and not rally my Pulse.

He gave me 1 Metroprolol in the hospital. I think that's the name of it. I didn't have any Palpitations. He prescribed this new one cause he wants to raise my blood pressure, and I had Palpitations today and they make me feel worse than when my Pulse goes up.

I hope I do start to get some kind of "regulation" at least soon. Not these going from once extreme to the next every hour.

[StayAtHomeMom]

I feel worse with the heart palpitations as well. I think that is why I love my Beta Blocker so much.

I had two TTT. I didn't pass out on either one of them. The first one I had a friend drive me and I was exhausted afterwards. Technician joked I ran a marathon. My HR was over 130 the entire 45 minutes. The second I did a little better afterwards. I rested about 30 minutes in my car and was able to drive myself the 3 hours home. 

The TTT set off my claustrophobia for a few minutes being strapped but after a few minutes I relax and it is OK. It is draining. Because you can't lay down or fidget like you normally would respond but it isn't too bad. Honestly I would rather do a TTT then the nerve conduction study I had done any day of the week. 

Sitting your pulse should be under 100. Anything over is "high". Depends on your body. 

Have you noticed differences with your smoking?

[dannyg]

I will do the TTT, I just hope it will happen on one of my "good days" and not one of my days like I had today where I couldn't even walk for 1 minute. 

The smoking.... It don't seem to affect me other than being bad for my lungs. It don't raise or lower my Pulse. I do need to quit though but it's hard right now cause I'm hyperactive usually and this has me resting to much with to much time on my hands. I will have to find another way to occupy my free time when I'm not feeling good besides lighting another cigarette.

 

 

 

[Guest ScottS]

"I will do the TTT, I just hope it will happen on one of my "good days" and not one of my days like I had today where I couldn't even walk for 1 minute."

Be sure you've arranged for a friend/family member or etc. to drive you home after your TTT. The hospital where I had mine wouldn't discharge me unless I first signed a release agreeing NOT to drive at all the rest of the day. (Of course, I was so whipped and wiped out from the experience there is no way I could have, even had I wanted to.)

[Pistol]

@dannyg - there are several things you mentioned in your posts that I am confused by: why did the cardiologist stop the metoprolol if it helped your symptoms after just one dose? And why does he want to start you on a med that INCREASES your BP when you are already hypertensive? --- The TTT may shine a light on all of this. He will see what your BP does as well as your HR. My first TTT revealed NCS ( neuro-cardiogenic syncope ). My HR shot up then dropped and I fainted. BP also went up and then dropped. My second TTT revealed tachycardia and hypertension. So - depending on what the TTT shows your BP does will give the cardiologist a clue as to what your BP does when you are having symptoms, and thi in return can aide him in deciding on what med is right for you. You do not have to fant for this - many people don't - but the readings will hopefully give a conclusion to a treatment plan. 

[dannyg]

@Pistol- That has me a little confused also. He came in the room, had them take my readings laying in bed, then sitting, then standing. Pulse went up to 110, BP was I think about 135/92. That's when the nurse came back and gave me the Metroprolol. Next day he came in, did the readings, blood pressure was like 98/65, then he says he needs to raise my blood pressure and that will lower my Pulse so he changed the med when I left the hospital. I was a little confused also. I will have to have the TTT done like everyone mentions so they can get me on the right meds. 

Thing is, I don't blame the doctor, I noticed right before all of this, and the same thing in the hospital the nurse was telling me when she was taking my readings every 4 hours. Just laying in bed, doing nothing, 1 time my BP is 135/85, 4 hours later it is 110/70, 4 hours later its 140/98. Its all over the place at different times. One time I stand up my BP dont change much, next time 4 hours later, it might drop to 92/65.

I noticed this like I mentioned when I had the bladder infection back in November. My GP checked it and said it was 140/100 at his office. I came home checked it a few times, it was 130/85. Checked later a few times, about the same readings. That night it was 145/100. I thought the Monitor was bad and doctor said the digital ones are not accurate, so I purchased the manual one and learned how to use it, and turns out the digital one is really accurate.

Last night about 6pm I had Palpitations for a while, then it went away and I kinda "perked up" and felt better than I did all day. I went to bed about 10:30, woke up at 4am and stayed up. I didn't have any Palpitations, but had a bad taste for a cup of coffee and I don't have Decaf so I ran out to get a cup. Not sure if its the coffee or the pills he changed me to but I feel light headed right away when I stand up now and had to sit back down. Usually I can know when I have to sit down cause I feel it, this morning I get up from sitting and it's like "uh oh," right away. I shouldn't not have had the decaf coffee cause now I can't tell if it was the coffee or the med he gave me that has me goofed up this morning.

[Colomom]

Before settling on fludrocortisone as the best treatment option for you it would be helpful to get a fuller picture of what’s going on with your BP. You should ask your doctor to order ambulatory blood pressure monitoring. It’s a blood pressure monitor that you wear for 24 hours, it takes your BP at consistent intervals thru the day and night. Considering there had been previous concerns about high BP, i’m surprised that a doctor determined that you should be given a med to raise your BP based on a marginally low reading that was taken after you had been administered Metroproponol. 

Another thing that jumped out at me while reading your story is that you often wake up panicked with tachycardia. Perhaps it is the result of the tremendous stress and anxiety you are under, but it also could be a symptom of sleep disordered breathing. Has anyone ever told you that you snore?

[dannyg]

I think I'm going to stop taking this fludrocortisone until I call the doctor when he gets in on Tuesday. I only took the 2nd pill today and having a bad day. It seems my Pulse is going up faster than normal. As soon as I stand and check my Pulse, it's at 140 and I'm having head pain and really feeling horrible. Seems like its going to 140 faster than usual. I'm trying to do a few things here today and normally I can move around for a few minutes, but today I been having to try and go from room to room as soon as I can so I can sit or lay back down. Not sure if I'm getting worse or it's the fludrocortisone but Im light headed even sitting down. Even when my BP goes to normal and my Pulse is normal at about 80, I feel horrible.

The waking up with Panicked Tachycardia wake ups really just recently started last week I noticed on 3 days in a row. The last few days since I been home it hasn't happened. Maybe I just didn't notice it cause it was waking me up with Palpitations and they went away for now.

The sleep disorder I don't snore and never had trouble with. I always did wake up during the night all my life, but I worked strange hours and different times so that had me always not a regular sleeper.

I definitely will ask him and get the 24 BP Monitor.

 

 

[dannyg]

Wondering if anything is related or possible and maybe I can get some ideas if I'm possibly right or wrong.

2 weeks before Thanksgiving I never had any problems. Week before I took Ciprofloxin cause I had a bladder infection. Had my yearly blood test done, doc said the white blood cells were a little high in the upper limit, but thats from the infection. I took the pills for the 10 days, and about 3 days later is when I started feeling "light headed". Woke up in that 1st "Panic Mode" feeling, went the ER. Everything was normal as far as the blood work, they did an MRI, and found nothing. I was just "light headed" but not to bad. Just "not myself". They did tell me my white blood count was at 11, maybe I had an infection. I thought that was strange cause I was done with the Cipro. I got around good, nothing different but had a day with the "light headedness" on and off, and my ears would ring. 

A week later I had that wake up "Panic Attack" and went to another hospital. Stayed the 2 days. They did an Nuclear Stress Test and a standing sitting BP Pulse check. All was normal. The monitor they put you on in the Hospital was normal. Cardio doctor gave me print outs of the times I wrote down I was feeling "light headed" and dizzy. Nothing changed at that time. Hart rate was good and in normal rhythm. He didn't find anything. He did say to see a Neurologist for the light headedness maybe he can figure it out.

About a few days later, still light headed, I didnt feel any worse or any better. I was doing everything I normally do paying it no attention. January 2nd I woke up felt half way decent, started cleaning, then felt real bad. Got like a nervous feeling, and something told me to check my Pulse standing up. It was 154 and I was shaking. I went to the ER and in the ER room it was bouncing all over even when I laid there and just tossed around. It would go from 70 to 103. 

I'm just wondering how did this go from being "light headed" 5 weeks ago to this "Full Blown" possibly POTS ?

Did the Stress Test aggravate the situation or make it worse ? ( I know sounds silly but the timing has me wondering)

The Bladder Infection.... White Blood Count was up because of the Infection, but 3 weeks later the White Blood Count was still up. Could it be the Infection or another Infection brought this on ? 

I'm just confused and trying to get some input from members what they think. The doctors never told me why It could have happened. They are confused because I never had any underlying issues that could have triggered it. I notice many people that have POTS have other health issues going on when they got POTS. I never did.

Thank You   

[Pistol]

Dear @dannyg - ANY infection can trigger or worsen POTS. Bladder infections are notoriously bad like that since they are extremely stressful on the body and often do not get detected until you had them for a while. If your white count is still considerably elevated maybe you still have an infection - have they rechecked your urine? Even if your recheck is clean - you may have another infection on top of that. -- I would check your BP often - the readings you posted are mostly elevated, In dysautonomia it is not uncommon to have fluctuating BP. --- No - I do not think the stress test would aggravate your symptoms - not any more than any other time you have to stand for 30 minutes. I would see an autonomic specialist if you continue to have symptoms ( and for most of us that often means you have to go out-of-state ). Best of luck!!!

[dannyg]

When I go to the doctor I'm going to ask him about my white blood cell count. I never thought to ask about it last week when I was laying in the hospital and they kept taking blood every 12 hours. They never said anything. I will ask the doctor when I go see him. 

The bladder infection ... Back in November I had a day I felt warm like a low temperature but checked and didnt. Then one night I felt a little tenderness on my lower left side. When I went for my checkup I told the doctor and he said "might be a bladder infection, take Cipro for 10 days it will go away. Treat it before it goes jnto your kidneys cause then its harder to get rid of"... That was it. Never took a urine sample, nothing. And all this time since then, being in the hospital 4 times in a room and emergency room, they took a urine test just once, last wednesday in the emergency room. They never said anything about the results but the ER doctor seen the urine thing on the table I left for the nurse and she made a comment and noticed "your urine is dark yellow hmm". I told her I been stressed out, dont know whats going on and havent been eating or drinking much and its been like that on and off probably  because Im dehydrated. She didnt say anything and left. 

Im definitly going to ask about the urine test and if my WBC was still high..... 

Thank you ! I forgot all about asking that ....

I do notice now Im not using the bathroom much and Im drinking a lot more water but it dont look real yellow when I go. Must be the meds making me hold more water... 

[StayAtHomeMom]

On 1/5/2019 at 8:46 PM, dannyg said:

I will do the TTT, I just hope it will happen on one of my "good days" and not one of my days like I had today where I couldn't even walk for 1 minute. 

The smoking.... It don't seem to affect me other than being bad for my lungs. It don't raise or lower my Pulse. I do need to quit though but it's hard right now cause I'm hyperactive usually and this has me resting to much with to much time on my hands. I will have to find another way to occupy my free time when I'm not feeling good besides lighting another cigarette.

 

 

 

As a starting stone to cut down, don't smoke in your house. My cigarette consumption cut in half when I did that. I think do I really want one that bad. Plus it is motivation to get up and move a bit. I have been doing this for about 5 years or so and now when I go to someone's house and they lit up in the house it freaks me out

[StayAtHomeMom]

Out of curiosity, have you taken any probiotic to counter your time on the antibiotic? 

[dannyg]

No probiotic. And I just remembered something. 2 weeks after this started they semt me to an ENT doctor. He had all my results, I told him about the blood test results and he gave me a prescription for Ampicillian to take for 2 weeks. That night I ended up in the hospital, I told them I needed to take the Pills and they told me no I dont need them, but they were the ones that told me my WBC was at the upper limit at 11... I came home and never took them. I still have them here.

 

 

 

 

[dannyg]

Im feeling really bad today. Dont know whats going on. For a week I been waking up during the night with my heart racing, and the last 3 mornings I cant do anything. Going from one room to the next I feel very faint, weak, and ears ringing.  I havent been having a bowel movement much either. Every other day. This is terrible today. I dont know whats going on if it the med he gave me now or what. And the heart racing at night waking me up. Anyone go through this ?

[dannyg]

Im back in the ER. My BP is sky rocketing

[Colomom]

Sorry you’re having such a rough day:(

Hope the ER docs are able to figure out something that will help make you feel better!

[dannyg]

Thank you. Sitting here waiting to go in a room in the ER. I have bad palpitations.  No way am I taking this Fludrocordisone again. 3 days I took it and my BP is screwed up now.  I have the Heart monitor on yet. I was driving here and they called me. They told me get to a hospital ASAP. Told them I was already 2 blocks away. I pray they can get me to some kind of at least 'normal" enough to get around being able to stand up and walk for 1 or 2 minutes at a time without me ending up in the ER. I didnt mind knowing my Pulse would go up and that I can figure out and time myself how long I can stand, but my blood pressure I cant know until its to high. 

 

[dannyg]

Is it normal to have bathroom problems with POTS ? I drink a lot of water, maybe urinate only 2 times a day, still feel thirsty lot, and I go number 2 only every other day. Is that part of POTS  symptoms ?