Completely Unstable Blood Pressure?

[trappedat20]

Hi, I'm new. I'm really hoping someone can help me. I got diagnosed with Dysautonomia at the very beginning of October. I've had a few of the symptoms during my teenage years, but they are such vague symptoms (dizzyness, chronic migraines, excessive thirst, ect.) that I'm not even positive if that was the dysautonomia.

Around March 2013 I started to get a few weirder symptoms, like a few times I worked out or went in the sun and would turn bright red and be unable to sweat, and would just feel so horrible. I also noticed that I started feeling extremely dizzy in the middle of the night and if something startled me and woke me up my heart would beat extremely fast and I would pass out when I stood up.

I was still able to function though, until around June 2013 when I got extremely sick. I have been disabled from dysautonomia since the beginning of June. I'm not going to go into a list of all of my symptoms being there is just so many and my brain feels foggy today. I had gone to the hospital twice over the summer and both times they found nothing after doing an EKG and blood test.

They tried to convince me I had anxiety but I knew better. I was so sick and I knew something was wrong with me. At first I thought it was really bad anemia because a lot of the symptoms of dysautonomia can overlap with it, but when they ran my blood test my hemoglobin level was 24.5. As in I wasn't even close to anemic. I was completely confused because at the time I felt like everything pointed to it. They also checked my thyroid and low and behold my thyroid was completely fine too.

The only physical evidence I had of there being a problem was my unstable blood pressure. The first time I was in the hospital it was extremely low, while the second time it was extremely high. It was so confusing. Was I trying to research a problem causing me low blood pressure or high blood pressure? That wound up being the thing that brought me to dysautonomia though. My biological mother is an EMT and when I told her everything that was going on my crazy blood pressure changes led her to believe it was dysautonomia.

I looked it up and felt it fit perfectly. It expained the crazy things that I didn't even think were related. It felt great to be told I wasn't crazy. I went to 2 doctors after that, both confirming the dysautonomia theory. They never ran any tests, but they knew I had it from my blood pressure readings and from my family and medical history (I had shingles at both 12 and 16, my biological mother has MS, I have scoliosis which apparently they were interested in, and yeah a bunch of other medical stuff.)

Sorry for the long history. I tried to keep it as short as possible, but since this was my first post I wanted to explain a little bit of backstory first. I feel like I fit the symptoms of POTS so well. Being unable to shower, being unable to stand for a while, all of it. The thing that confuses me so much about trying to find an individual diagnosis among dysautonomia is that my blood pressure and heart rate is completely ridiculous. It's not like my blood pressure gets high when I stand, or it gets low when I stand. My body literally just does whatever it wants. My readings are so crazy that I have other people take their blood pressure and they get completely normal readings back, I've tried several different machines, and I'm taking my blood pressure accurately. I'm the problem. I just ran out of my medication although my medication wouldn't cause it anyways.

Here's an example of me taking my blood pressure a few times today.

2:41pm: 108/81 heartrate 112 (sitting)

2:43pm 145/127 heartrate 41 (still sitting)

2:45pm: 110/95 heartrate 96 (still sitting)

2:46ppm 124/87 heartrate 118 (still sitting)

Yes, those are real numbers only minutes apart without me moving. It's not my machine, or me moving, or anything. I feel the effects when it goes to extremes too.

I tried to do the tilt table test on myself the other morning

Laying 15mins: 106/75 heartrate 104

Standing 1 min: 100/76 heartrate 138

Standing 2min: 113/80 heartrate 122

Standing 3 min: 100/62 heartrate 104

Standing 4 min: 97/69 heartrate 90

Standing 5 min: 94/75 heartrate 127

That didn't really tell me anything interesting. My blood pressure didn't get lower and lower or higher and higher, and my heart rate just kept jumping around for no reason and so it didn't even stay above 120bmp for a POTS diagnosis.

I took my blood pressure at different positions the other day

Laying: 71/52 heartrate 79

Standing: 101/80 heartrate 120

After walking down stairs: 97/67 heartrate 88

Those were all right after the other btw. It makes no sense to me why my heart would go down after walking down a flight of stairs but my body does a lot of things that make no sense.

Later that same day

Standing: 112/97 heart rate 158 (I was experiencing pre-syncope and felt like passing out so I kept taking my blood pressure and after I finally stopped showing Error this is what I got. Btw it shows error for me a few times a day because my pulse pressure will get really low. I know this because it only shows error when I feel faint and when it finally does give me a reading my pulse pressure is low.

Going upstairs: 151/96 heartrate 91

Sitting: 123/100 heartrate 80

I've noticed that most of the times I experience pre-syncope my pulse pressure is low, and I think that is the reason I pass out. I took my blood pressure again during pre-syncope the following day. I was sitting on a stool when my vision went black and I felt dizzy and so I sat on the floor. It took about 5 minutes for me to get a reading but when I did it was 110/94 heartrate 140. My legs and feet were this blotchy red and my knees had this bruised appearance to them. Later that night I was experiencing pre-syncope again, strangely at the same time my ears were ringing and I felt like my head was going to explode. When I got a reading it was 136/121 heartrate 149.

I've been keeping track of my blood pressure and heart rate for a few months now and it has gone from extreme highs 190/150 type stuff to extreme lows of like 80/50. My heart rate has gone from the 40's to being in the 170's. The crazy thing about all of this is that it normally happens at completely inappropriate times for no apparent reason. Like the extremely high blood pressure will be while I've been laying down, or my blood pressure will drop after going down the stairs. Other times though something like going up the stairs will make my blood pressure go really high. It's so hard to try to figure out what is going on when I get different results all the time. I just have no idea what is going on. If someone can give me some ideas I would be eternally grateful. I've heard of baroreflex failure but I really just don't know.

[castronovo112587]

This was going on with me since I gave birth to my 2nd child in June I started off with extremely high blood pressure I mean dangerous to the point of stroke at any moment it was 181/132 and stayed consistently high even on meds but suddenly it would fluctuate dramatically I mean 160/110 to 80/56 and like you said you can definitely feel it. After 2 months of that it finally has stabilized to normal bp unless I get a trigger like when I got sick or during my period. I wish I had an answer for you on how to control the fluctuating bp but I don't may I ask what your other symptoms are? I had carcinoid cancer in 2008 which mirrors pots symptoms so just wanted to see if you were having symptoms of it particularly flushing and diarrhea which are hallmark symptoms of carcinoid as well as elevated hr and bp issues. My tilt test was frustrating as my hr jumped 40 beats initially but started doind fluctuations as yours is as well he gave me a borderline pots diagnosis and says I definitely have some sort of autonomic dysfunction.

[trappedat20]

Thank you for your response.I looked up Carcinoid Cancer but I don't have any of the symptoms. I never get diarrhea, although I only go to the bathroom about once a week even if I eat a lot of fiber, and I'm always bloated and I do get abdominal cramps. I don't experience flushing either. The only time my face turns red was mainly over the summer when I didn't know hot environments would set me off and I didn't sweat so I just got really overheated. Don't wheeze either. Hmm borderline pots? I feel like I have every symptom of pots and it's very disabling because I feel so incredibly fatigued all of the time and so dizzy and weak when I stand that I'm just unable to do anything. My heart rate races often when I do things and I get chest pains. I get migraines all of the time and my ears will ring and I get ear aches. I have problems with sensory overload. I pass out a lot if I don't sit down when I start getting pre-syncope. I have a lot of pain in my back and neck and I'm wondering if I have some sort of nerve damage because of all of the pain I feel. I've noticed I got sick around the time I started getting pain there and now when I get pain there I get more sick. At the same time I wonder if it's not pots because of my blood pressure fluctuations. I've never heard of a persons blood pressure doing what mine does even among other dysautonomics and so I felt I needed to ask. It's definitely some sort of autonomic dysfunction but what type is the question.

[lynnie22]

Hi Trappedat20,

First off, let me welcome you to the group and say how I feel for you and hope you get some good answers soon.

Have you had a complete workup by an autonomic system neurologist? I think that's so important.

Although my blood pressure isn't quite as labile as yours, it is labile and after a year of freaking out about blood pressures that went as high as 185/120 and as low at other times down to 70/40, and changing every minute like yours, I went to several doctors, including a recent visit to Mayo to see what could be done about this. Even the experts aren't certain, but they did attribute it to POTS. Were your stress hormones tested?

Yes, something is way off in your sympathetic nervous system causing severe fluctuations in your blood pressure and HR. One thing I noticed in your numbers which make sense is that when your blood pressure goes up, your heart rate goes down or vicea versa. From what I know that's how it works. Now since all this happens independent of your position, and thus not necessarily postural, it is confusing as far as POTS. But I know there are so many different symptoms and problems that each person has.

I've been told time and again that everyone's blood pressure fluctuates every minute which it does, it's just that ours go to extremes, and yours goes from one extreme to another very quickly.

I have not been given much in the way of meds for my blood pressure -- a small dose of betablocker to keep my heart rate lower -- my heart rate does not go down much on its own and is pretty consistent, it's just my blood pressure that is not. But they do not know how to treat the fluctuations, not wanting to lower it too much.

I wish I had more information to share. From what you write, it sounds like you haven't had a really thorough workup and would really benefit from one.

Lynnie

[KareBear]

Welcome to the forum, Trappedat20!

It sounds like you are just beginning this journey with dysautonomia and seeing a POTS specialist will help provide more answers. You symptoms sound very much like mine except my bp never goes high. There are lots of people on this forum that do get higher bp's though. Have your docs tried any meds yet? There are many meds and other things that can help stabilize some symptoms.

One thought is that some of your bp readings could be off a little if you take back to back bp measurements. A couple back to back is ok but if they are too close together and you take several you may want to switch arms to get more accurate readings. Sometimes the blood flow in the arm hasn't recovered before taking the next reading if they are too close. Just a thought!

Of course the basic things like increased fluids (lots of gatorade really helps me, I drink about 60+ ounces a day), and increased salt intake can help POTS. Have you tried these yet? You were so lucky that your mother recognized the symptoms and got you on the right track so soon. Hopefully your doc can help you get your symptoms under control more. And soon! For me, my symptoms eventually "settled down" and my symptoms became more leveled out and consistent over time and with the help of meds and that seems to happen to many others so Dont give up hope! Things can get better Hang in there!!

[castronovo112587]

My bp fluctuates quite a bit on flares and days I am feeling not great. Atleast if its low you can eat a real salty snack and drink a lot of fluid but the extreme high is more of a problem.

[gjensen]

Trappeddat, your numbers does not show a failure. That is good.

What I experience is a series of over reactions and over reactions to the over reaction. Eventually it levels out. Until I do something. LOL.

A failure would be heading one way and no compensation. Like in Baroreflex failure. There is no response to bring it back in check. Or Autonomic failure where the blood pressure crashes, but there is no heart rate response to compensate upon standing.

Definitely get in front of a subspecialist in these disorders. Keep reading through this website, and keep asking questions. This is new to me, but there is many helpful knowledgeable people on this site.

[trappedat20]

My doctor tried me on midodrine but it didn't really do much. It just made my vision not black out during pre-syncope episodes, but that wasn't worth the cold sweats it gave me. I was on 15mg of adderall twice a day for ADHD-Combined type and since we noticed it helped some of my symptoms he increased it to 15mg 3x a day with a sleeping pill so that I could take it in the late afternoon instead of experiencing an early crash at 7pm. Adderall helps me quite a bit because it helps some of the symptoms, but i'm still disabled by this.

I haven't really had any tests done. My doctor has all sorts of tests he wants to run on me but we've been waiting until I get on insurance. I'm currently paying out of pocket for everything. We plan on getting on insurance this month. I also live around Nashville, TN so if the tests my doctor runs don't work out I can go to Vanderbilt. My stress hormones were not tested, although I think that is a really good idea. Especially since I've had problems with estrogen dominance and my hormones being screwed up (I have endometriosis and pmdd.) I'm always feeling stressed so it's probably a good idea.

I'm kind of weary as far as doing things to raise or lower my blood pressure since when I experience the swings they are so drastic as it is that I don't want to do anything that will make it worse. Medicines don't make much of a difference anyways as far as I can tell. Adderall and Midodrine didn't really effect my blood pressure. Although I guess I wouldn't know because my blood pressure doesn't really have a normal. I don't carry a blood pressure machine on me when I'm forced to stand for a while, and I wouldn't put myself through that torture on it's own so I don't know what my blood pressure is after standing a while. Although like I said I did notice my pulse pressure tends to get low whenever I faint. I just noticed the pulse pressure thing the other day and it wasn't something I was paying attention to, although I think I need to start recording that too to notice any more connections.

As far as the blood pressure machine thing goes, normally I don't take my blood pressure that often, I was just doing that for testing purposes because I was really curious. My blood vessels are still broken though in lines up both of my arms from that day though. Since my pulse pressure gets low when the machine is tightening to find your pulse the machine will read up to the high 280's sometimes trying to find my pulse and then just wind up reading error. Typically this only happens when I'm feeling faint though and I typically expect this to happen.

I drink a lot of water on my own because I'm always soo thirsty and my mouth always feels so dry. I've been like this since the beginning of highschool and everyone always use to pick on me because I would carry this huge jug around and people use to think I was doing it to lose weight or something but I'm really just always thirsty. I just started drinking gatorade and I do notice it helps a little bit. I'm trying to start swimming at the YMCA and so I drink gatorade afterwards to help me recover. When I get in the water I feel like 85% better, but then the second I get out it's like gravity slaps me in the face and I feel so sick.

I'm glad my numbers don't show a failure because I was actually worried about that. That is something I didn't think about though, it's a good think my heart rate tries to compensate for my blood pressure