Swings in BP - Newbie in need of advice

[dizzytizzy]

Hi everyone. Newbie here in the process of getting a diagnosis. 

For the last half of 2017, I was noticing palpitations (not racing but skipped beats) and having dizzy/vertigo spells while driving. I was under a lot of stress and chalked it up to that. 

Fast forward to one morning in January 2018, I  was sleeping and rolled over to find a comfier spot. Heart kind of flip-flopped and then started racing. I called 911 because I didn't know what the heck was going on. I was at 160 bpm when they arrived but quickly came down into the 130s and was in normal sinus rhythm. Transferred to hospital ER and nothing was really found except for low B12 and vitamin D which are currently being treated. Consulted with a cardiologist soon after who ordered an echo and 10-day Ziopatch to monitor my rhythm. All results came back normal. He suggested it was anxiety and said I could take a low-dose of Bystolic to smooth out the palps. Because my BP has always trended on the low side, my PCP and I decided to not do the beta blocker for fear it would bottom me out. PCP did prescribe a small dose of clonazepam to help with nighttime anxiety that began following this event because I was beside myself not knowing what was going on. 

All was somewhat well, I was exercising, sleeping well, and life was getting back to normal until I came down with a nasty head cold in March. This (in my opinion) seemed to trigger more nighttime and early morning tachy episodes. I've had seven events this month, sometimes as early as 11pm at night and sometimes as late as 6am in the morning. All have woken me from deep sleep. Instead of going to the ER each time, I've been able to stop the episode by bearing down, breathing, and applying a cold compress to my face. I can get my heart rate back into the 60s within 15-20 minutes - it comes down gradually. At the ER, it stays over 100 bpm for at least four hours. 

Anyway, finally got into to see an electrophysiologist because my PCP immediately thought of dysautonomia. I'm currently 10 days into a 30-day heart monitor but during the consult, the EP said I had some autonomic dysregulation when it came to BP, but he did not think it was full-blown POTS. We initially tried diltiazem to ease the tachy episodes, but I continued to have them occur even just one hour after taking the med. 

Just today, he started me on midodrone - 2.5mg upon waking, at noon, and 4pm - based on these orthostatics that were taken while on the diltiazem 30mg three times per day.

Laying for 5 minutes - 97/59, HR 72

Sitting for 1 minute - 96/67, HR 90

Sitting for 3 minutes - 99/65, HR 85

Standing for 1 minute - 102/79, HR 102

Standing for 3 minutes - 99/76, HR 98

**I'm only two doses into the midodrone so far and thought things were going well. This morning after taking it, my vitals were 108/71 - HR 78 supine and 113/76 - HR 84 after standing for two minutes. I felt kinda jittery, but seemed to have some energy. Around 2pm - two hours after taking the second dose - I started to feel really shaky and very tired/sleepy. I took vitals again and they were 97/71 - HR 76 supine and 116/82 - HR 80 after two minutes standing.  

What is going on?! I know this doesn't fit POTS because there's no big jump in HR. And it's not orthostatic hypo, right, because I'm swinging up instead of down when standing. Anyone have a clue what could be going on? I know I don't have a ton of data to go off of, but I'm a bit worried to take the 4pm dose now.  This month, I've had some rather nasty headaches and have felt an internal trembling/humming particularly when sitting down. I have been getting shaky after eating too, which is new to me. 

I do have Hashimoto's which levels were recently checked and all good as well as a dx of fibromyalgia from 15 years ago. Not sure it's really fibro, but that's what we landed on after years of testing. 

We're waiting on glucose, insulin, AIC lab results as well as a 24-hour metanephrines to rule out pheo, but I'm thinking and feeling like I have extra adrenaline running through my body. Anywho, I'll quit rambling. Sorry for the length and I appreciate any help anyone might throw my way

[Pistol]

It is difficult to determine the VS swings when you are on meds. They are not accurately describing what would be going on without them. Your symptoms may still be there but the readings (or swings) may not seem as severe. Have theu checked orthostatic VS BEFORE they started Diltiazem or midodrine? What were they then?

[dizzytizzy]

Unfortunately, they never had me track orthostatics prior to taking the meds. Docs only ever did BP sitting down, except for one trip to the ER for the heart racing they did a bedside TTT. But there wasn't any significant variation in those numbers I was told, perhaps because I'd just gotten a full bag of fluids?

The EP did have me lay down, then sit up, then lay down, then stand up in very quick succession during my consultation. He was taking my pulse the whole time and that's when he told me I had some autonomic dysfunction regulating my BP. Never game me any hard numbers though. I did flat out ask him if he thought it was something as severe as POTS and he said no at that time. He suggested it may mostly be from me pulling back on cardio, which is what I did when I kept on having the weird nighttime tachy. 

He told me to increase fluids and salt (so I'm assuming he was thinking low blood volume) and get back to doing cardio as it would help the blood vessels in my legs function more efficiently. That's when I was fitted for the 30-day monitor as well to see if we're dealing with any arrhythmias.   

I did take stats this AM before taking my midodrone. Not sure if there is a "rebound effect" that would cause these numbers to be skewed, but I thought I'd give it a go:

Supine after 5 minutes 109/69, HR 72

Standing after 2 minutes 115/84, HR 82

Standing after 5 minutes (just to see what it would do!) 114/90, HR 90

My heart started pounding after standing and I had very shaky legs at the 5-minute mark. To me, it does look like I'm struggling to move blood volume around and that's why my diastolic is rising. It's typically always ran in the 60s to low 70s prior to this, but that was always sitting or lying as those are the only ways docs/ERs ever seem to take it. I'm certainly more dehydrated in the mornings so that could be a factor too. It's all just such a pain to figure out. 

I did do some balance function testing after the first tachy incident and was told I had a vestibular imbalance causing the dizziness/vertigo. So maybe that's true or maybe it's just all part of this whole thing where my ANS is off? I haven't had a chance to do the vestibular physical therapy because I've felt so poorly. 

[yogini]

  The numbers that you report and the swings seem pretty normal, except for the times when your HR goes over 100 in your sleep.  I don't blame you for not going to the ER.  Maybe you got dehydrated after the cold so make sure to load up on water.  I hope you are able to get answers soon.

[Bluebonnet08]

I think the only "official" way to be diagnosed is via a tilt table at an autonomic center.  They require that you come off all meds a few days prior to testing because it won't be an accurate reading otherwise.  My personal opinion is that it is good to get the official test because then you will at least have the right information going forward.  There are other types of dysautonomia other than POTS as well.  

[dizzytizzy]

I've been away for a bit, but thank you for weighing in. The amount of stress this has caused has really gotten to me and the fatigue (which feels very similar to the fatigue I felt when I was diagnosed with FM in 2005) makes it difficult to care for our daughter.  Interestingly, I've read that there is a lot of crossover between FM and ANS dysfunctions. I feel like this may just be a "flare" or continuation of the FM or another aspect of it showing its face. I never really got better after the FM diagnosis and I didn't pursue any treatment for it, but I just learned to live with it and eventually settled into my new normal. I was only 23 at the time and all the doctors just wanted to give me anti-depressants and send my on my way anyways. That wasn't the route I wanted to go. I ended up cutting gluten and dairy out of my diet and felt quite a bit better. The stomach troubles I had had all of my life went away at that point too. 

The EP now has me drinking 2L of water daily along with consuming 4000-6000 mg of sodium. He's also upped my morning and noon dosage of midodrone to 5mg. When I asked him what we are aiming for blood pressure-wise, he said he is less worried about the numbers and more worried about the symptoms I'm experiencing. He said if the body is under stress trying to regulate the BP, then we need to take action. 

My husband has high BP/cholesterol issues and has been advised to follow a low-sodium diet, so I have been following that with him for the past year. We cut back even more in February and then in March is when I had so many episodes. I'm guessing I was doing more harm than good by going so low-salt. Funny how the research isn't that strong in support of low-sodium diets once I started digging into it. 

[yogini]

Americans eat processed foods and tend to be overweight and have high BP and so the average person is better off reading labels and eating less salt, fat, carbs, sugar, etc. This makes all of us think to avoid salt, fat, etc altogether, but that is kinda dangerous too, esp if you are normal.

[dizzytizzy]

Definitely, yogini. 

Did any of you see a decrease in BP and HR when increasing fluids/salt/midodrine? My orthostatics this AM were lower and less varied. I think the less varied is a good thing, but I didn't expect the overall drop. I thought all of the fluid/salt/meds were actually supposed to increase BP and lower heart rate.  

Supine 92/58, HR 56

Standing 2 minutes 99/70, HR 64

Standing 5 minutes 105/74, 72