Sudden Changes In Bp/hr, Your Experiences Please!

[bethanyh]

I will try to make this as concise as possible but I have a multi-question, long and confusing post, thank you for bearing with me!

My BP is usually mid to high 90's/high 50's or low 60's and resting heart rate between 60-90 bpm with multiple times of tachycardia throughout the day. I was taking 7.5mg Midodrine 3x daily and not seeing an increase in BP numbers but feeling semi less symptomatic (inconsistently). I am also on a thyroid supplement and I take Ativan.
I was at the Cleveland Clinic three weeks ago and became sick while there (head cold, stomach upset). I did not think much of it, came home feeling terrible and thought I just needed time to recover. The one afternoon I was feeling particularly awful, very dizzy and disoriented so I took my BP and it was 115/72, a reading I have NEVER had in my life! My pulse was 61. I continued to take my BP periodically the remainder of the night and it kept slightly increasing, as did my heart rate. By the time I went to bed my BP was up and my heart rate was around 99. I took my .5 Ativan as usual and expected to be back to "my normal" the next morning. The next two days my heart rate never dropped below 100 bpm and was staying in the range of 111-125 resting, any time I would get up or move it would increase even more. I took an extra dose of Ativan (.5mg) mid afternoon both days and that did not help anything. I called the on-call cardiologist at CC and he recommended an ER visit for evaluation. They gave me fluids only, no meds, and my HR came down to about 90 and BP was around 107/67 upon discharge. All blood work was normal, chest X-ray was fine. For two days I was back to "my normal" then the spike of both happened again. I let it go for three more days but was again advised to go to the ER. They repeated the same blood work and X-ray, the doctor told me my vitals were normal and I was fine. I insisted upon the fact that my BP was significantly higher than MY normal though I realize 127/78 is fine for most healthy people. I also heavily insisted on the fact that my resting HR had been over 100 bpm for three days and I was advised by CC and my local cardiologist to come in for evaluation. This time I had to ask for saline before I left and they gave my the smallest bag possible, very frustrating!
Since those two ER visits my BP has remained high for me (112-127/65-78) and my HR has been all over the place from 60-136 bpm with extreme spikes upon positional changes or exertion (i.e, a shower).
I am waiting to hear back from CC and my local cardiologist regarding all of this.

Here is what I am doing now/questions. Please realize that I am reaching out for help, not taking anyone's answers as complete or total medical advice:

1.) I have stopped taking my salt tablets (SaltSticks) and am not putting salt on any foods, whereas three weeks ago I could not get enough salt. I have kept my fluid intake the same, about 70-80 ounces per day (I have stopped drinking my Propel Electrolyte and coconut water because of the sodium levels), I am still wearing my 20-30 mmHG compression stockings, have been keeping my feet elevated, staying reclined, etc.

2.) I have decreased my Midodrine back to 5mg 3x daily but do not know if I should even keep taking it. My local cardiologist recommended keeping it steadily in my system despite higher BP numbers but I am feeling awful with a higher BP. Apparently I seem to feel better with a lower BP... Has anyone else experienced this and if so, what have you done?

3.) I am very anxious about what is happening, which is not helping my vitals, and I do not know what to do. Daily I am getting a lot of facial flushing, ears turning bright red, terrible headache, I am visibly very shaky ALL day for no reason, I am nauseous, have no appetite, my muscles are ridiculously tight, as I am seemingly unable to relax.

Any tips? I have tried deep breathing, praying, any and all distractions I can think of and nothing seems to be helping my vitals. Are the things I am doing causing me more harm than good?

[Guest ANCY]

Sorry you are going through such a difficult time right now. I don't want to give medical advice but I will let you know that what you are describing is similar to what I had when I had sepsis. You mentioned you were feeling sick, are you still? Did they run tests for any type of infection?

The last time I had sepsis, about 8 months ago, it came on similar to flu symptoms. 4 out of the 5 times I've met the criteria for SIRS (Systemic Inflammatory Response Syndrome). For me It typically starts with fevers, flu symptoms and a feeling of indifference to everything going on, I just want to sleep. Next my heart rate goes crazy (more than POTS normal) with major fluctuations and then my BP becomes high for me. Because I'm stubborn I typically don't end up in the er until my heart rate is 170s or higher and I look like an inflated balloon even when my nurse tells me I need to go.

For me it's difficult to determine what is going on because any type of infection causes changes in vitals. The first time I got sepsis it took a month and several er trips and a battery of tests to finally figure it out when all they needed to do was run blood cultures. My white blood cell count, which should be elevated with a major infection, has always been either low or normal all 5 times.

I hope you and your care team are able to find out what's wrong and things improve soon. I know the frustration of frequent ER trips with no results but if you feel you need to go in please dont wait. You will be in my prayers. God bless.

[kellygirl]

Hi,

Sorry you are dealing with wacky vitals right now. I take temazepam 30mg on occasion for sleep. Temazepam is also in the same drug classification as ativan (benzodiazepine). Every single time I take it, my heart rate is jacked up through the roof 2 or 3 days after I take one, and my bp is all over the place, usually hypotensive with standing when I usually am not. I read and article which I am searching desperately to find that benzos actually contribute to wearing down the autonomic nervous system. When I find it, I will post it here. Give me a day or 2. I still take it even though my body reacts that way to dosing with it because once I get to a certain point, getting sleep is more important than dealing with wacky vitals.

[bethanyh]

Ancy: Thank you for your well wishes and prayers, I appreciate it! And for writing back about your experience. Both times in the ER they tested for a number of markers, including any inflammatory or infection markers, white cell, red cell, etc but everything came back normal...I am really starting to dislike that word normal! I have never had sepsis so I don't really know what to expect with something like that but it is certainly worth looking in to. Thank you again for your thoughts!

kellygirl: Thank you for sharing this information with me, I have not heard of this type of reaction before to benzodiazepines. When I first began Xanax, then moved up to Ativan I had no negative side effects, which for me is a rarity because I am typically hyper sensitive to any and all medications. I would be interested in the article, I will try to search on my own as well to find out more information. Thank you again!

[Debbie Rose]

Wow! What a roller-coaster ride!! So sorry you are feeling so badly. I have only had dips with standing with BP and faster heart rate. Now that my doctor increased my florinef these experiences are less severe as well, for now. I am still waiting for a diagnosis so I don't know much except how my body responds to different things. I had a hard time convincing people I was reacting to a "rapid heart rate" of 90-110 because they never get alarmed by that number. But for me with a resting HR of 45-55 that is a high rate "for me" So I understand how a higher rate than you are used to in BP can make you feel off. Has your doctor allowed you to adjust your midodrine?? I have always been told never to change doses of medicines without my doctors directions and awareness, and never to stop any of my meds without getting my doctors involved. Bad reactions can happen sometimes.

I hope your doctors can help you this week to stabilize, this is such a wonky weird bunch of conditions

Keep us updated and my thoughts and prayers go out to you

Debbie

[bethanyh]

Thanks Debbie, sorry for my delay in responding, I did not even see your post. I am sorry to hear that no one takes you seriously either, it is an awful feeling!
My doctors are know I have bumped my Midodrine back to 5mg 3x daily and that seems to be fine but they said I can titrate up again if needed. You are right, this is absolutely a roller coaster ride!