MTRJ75

Thanks again. Don't mean to be nosy, but since it's going to be considerable effort with some help needed to get there, I'm hoping the result is not just things I've already done. 

4 hours ago, WanderWonder said:

I've been forcing myself to continue exercising even though I feel tired. Strangely enough, my heart rate goes down and I feel less tired!

This morning I was starting at 120bpm just standing still, but when I walked more, it went up, but it eventually leveled out to about 105-111bpm.

Anyone else experience that?

Yes, I think I mentioned above the effects of starting the treadmill stress test where my heart rate decreased at first. 

I think it's standing still for periods of time that's a bigger issue sometimes. 

Thank you @Lily

Good to hear some positive feedback. 

Have you improved a bit since seeing him? 

I guess frustration is an emotion, but really anything my body perceives as stressful (and it now perceives so many things as such). I don't know that there's often any sort of emotion attached. For instance, I had to lean over to write some stuff down while on the phone the other day and realized that the paper was wet because I was drenched in sweat just from the act of leaning forward and writing. 

I haven't been diagnosed with VVS, but have had the lack of speech thing a few times. For me, it's like my mind wants to say words and sounds come out of my mouth, just not in the form of words or at least not the words in my brain. Unfortunately, this was one of the symptoms that my family believed I may have been "selectively enhancing" and it felt so surreal that afterward I even questioned myself if it was real. 

I get the shakiness too. Internal tremors are one of my worst symptoms as a matter of fact and caused me to have to give up working out around a year and a half ago because the post-workout shakes got so bad. Now I can sometimes get the full effects of a workout (sweating, shaking) from a frustrating phone call. 

I'm wondering if you might want to experiment with some more friendly sugars (fruit?). The Coke especially probably isn't doing good things to your body. 

Even though I now have great difficulty traveling, I'm at the point where I really need a specialist at this point. Here and on the Dysautonomia Int site, there's only one Dr who shows up in the entire state. Is anyone else from the area and does anyone have any experience with Dr Tullo? 

Some genius person has to be able to figure out how to do this by laser or something eventually, so we can take these treatments as often as necessary...but probably not until or IF the demand is high enough unfortunately. 

I know that might sound ridiculous now, but medicine and technology are currently doing things we probably thought impossible not too long ago. 

When I was first semi-diagnosed, I was in the cardiologist's office, all hooked up for my stress test. She walked in the door, I stood up and she saw I immediately went to 130 bpm and realized something was wrong. I thought that was it, we're done here and sat back down. She said "What are you doing? Let's go. Get on the treadmill." 

Odd thing is I don't even think my heart rate increased any more and even went down a bit for a second or two at first. This was about a year and a half ago and growing issues have kept me from being able to exercise at all anymore, but the elevated heart rate alone didn't stop the cardiologist from making me run and she sent me right home afterward too, so she didn't seem to be immediately concerned. 

2 hours ago, Jwarrior77 said:

@MTRJ75 If I remember correctly Decaf-Coffee still has a small percentage of caffeine in it despite it's name. I don't know if that was enough to have an effect on you to cause any symptoms.  A lot of people on here seem to be hypersensitive to different things so it might have played a role in triggering something considering you started getting symptoms after drinking it.  I think you're right that not eating or drinking anything could have done something. 

In regards to the skipped beats while standing up I don't really have an answer. I do remember however many months ago I had a strange sensation in my neck while standing up different to the usual throbbing. I grabbed my stethoscope that I got from Amazon and listened to my heart. It was freaking out of course but was also doing triple beats and skipping it sounded like. It freaked me out and I immediately lied down. I kept checking through out the day and it seemed to stop doing it. Hopefully it's just one of those weird Pots phenomena. 

Hope you are feeling a lot better and that the skipped beats have calmed down.  

So I never have caffeine anymore because I know that sets me off most times (not all). Decaf has never given me a problem before and I did have a decaf less than a week earlier without issue. It must have been the diuretic effect at that point in time.

The last 30 or so hours I’ve been home, I’m still dealing with a lot of my normal issues, including chest pain and pounding, but the pvcs have almost entirely disappeared so far post IV.

Kimda makes you wonder, if this treatment is side effect and long term effect free and can have such a positive effect, why can’t someone figure out a more efficient way of delivering it?

I feel all different kinds of chest pain all the time. Some on the left, some on the right. Some comes and goes for weeks at a time. It can be pinpoint or run in lines. Never sure what any of it is. I know this doesn't help very much, but it does seem common. For me it's more comforting when I can at least usually identify the pain as closer to the surface (muscle, nerve) rather than deeper inside. 

6 hours ago, Pistol said:

You mention urinating a lot - have they tested your RAAS and ADH ( Anti-diuretic hormone ). These - of not normal - can cause havoc with your fluid balance and in return cause autonomic symptoms. 

No, I have not. I'm now wondering which doctor would to bring this up to, who would be willing to do this because I ask them for a lot of outside the box testing and can get met with some resistance. I've had issues with fluid retention medications too. Florinef was the first thing to set off a real PVC problem for me earlier in the year. 

I haven't gone in for fluids since last year, so that's a good thing. I'm sure I'm not optimally hydrated ever, though I'm also rarely functional anymore either, but I'm not looking to go in and get an IV bag on a weekly or even monthly basis. I just don't know what the answer is to stay hydrated anymore. Aside from all the water (I even sometimes drink alkaline water - my chiropractor has a machine in the office that he lets me fill up jugs with), I use sodium chloride tablets, I was also adding salt to my water the other day and I also add an electrolyte powder to a glass of water first thing in the morning, then my second glass is with lemon, honey and ACV. 

These responses have all been very helpful. My first experience with clusters like this, it really felt like it could have been either vtach or a fib maybe. And I was triggering them every time I got up after dinner for two nights. Glad it happened there. After 20 hours of consecutive IV they finally sent me home to an uneventful evening. 

Convo with hospital cardio was a bit difficult as he told me I had to find other ways to stay hydrated because IV fluids are not an option for me going further, as if I’m intentionally urinating out 15 cups of water even with the salt. Said I was too young for the insurance to keep letting me do that. The Sjogrens just makes it so much harder to stay hydrated too. What a combo.

I was really worried that this was going to be my new daily norm and still am to some effect. Couldn’t believe it took more than 24 hours and an episode on monitor to convince them to give me fluids.

Yes. Continuous fluids now. One of the nurses has a few Pots patients gave me some potentially good news. She said there were single beats in between even though they didn’t feel it, so these are runs of bigeminy, not VTach. Still something going on and I’ve still never had this before but let’s hope the fluids help it become a rare and not a new daily thing. She did say these types of events aren’t that uncommon for her patients with POTS.

So the good news is that it just happened again on monitor....four or five skips followed by boom boom boom.

The bad news is that it happened again at all.

How can I convince myself this is a pots thing from two days of possible dehydration and no sleep.

Its almost like I can feel them sitting there stuck in my chest waiting till I stand up for a few minutes to release them.

1 hour ago, yogini said:

In general dysautonomia is dysregulation of the HR and BP.    Many of us that usually have low BP and high HR get high BP and/or low HR sometimes as part of our symptoms.  Higher BP often coincides with low HR, because the heart works harder to pump blood.  (The reason many of us get a lower HR when we take in more salt.)   This incident  doesn't seem too unusual for dysautnomia - even the range of your high BP doesn't seem sky high - but it is best to discuss with your doctor.  Also note that if you drank coffee with caffeine that would impact your BP.  

 

Yes I did think it made some sense this way too. The BP has been good today though. Both lying down and sitting.

There are no pots specialists anywhere around here. My pcp and the cardiologist on call hardly know what it is and only because I previously explained it to the former. Still haven’t gotten fluids but I was able to walk around once today without getting out of rhythm. Nervous system is absolutely on fire due to lack of sleep, but heart has been in rhythm today. Gonna request another walk and fluids again later. I feel lucky that some of the cardiac nurses know what pots is. Drs have asked who diagnosed me with POTS and I tell them my cardiologist, yet they haven’t contacted her. I just want to make sure if another out of rhythm episode happens that I’m here with the monster on instead of home.. They did see my BP shoot up with heart rate when they took it standing up last night.

57 minutes ago, MomtoGiuliana said:

I do not know how unusual this is for POTS.  When I am dehydrated and my blood volume is low, my bp actually goes up.  At the same time I will feel faint, dizzy, etc as if my bp were low.  Rehydrating can bring my hr and bp down.

In general it is not too unusual w dysautonomia for a patient to experience both low and high bp.

If you are dehydrated you may notice more symptoms on standing, such as more palpitations.  IV fluids help me a great deal when I get into a "POTS hole".

Thank you. this is so helpful. It was the standing palpitations which were out of rhythm that sent me here. All of my palpitations have always been in sinus rhythm prior to this. They strangely still have not given me fluids yet even though I have asked. Still have not seen a dr other than ER.

Thanks Kim. My cardiac nurse understands Pots and pvcs somewhat too thankfully. Ive Been wondering if it was truly decaf too.

Fun development. Ended up in ER. Twice I stood up and had what felt like a bunch of skips and fast beats all jumbled together. There was an inverted t wave on ekg but all other tests fine so far. Looks like I’m spending a day or two here. ER doc confused because my heart beat is fine lying down and gets a little skippy standing up. Let the good times roll.

The good news is all my blood sugar stuff is great.

Weird thing is before googling, intuitively the elevated BP made sense with low blood volume/dehydration because it was more work to move the blood around to where it needs to be but Dr Google tells me that’s not the case. Just had a reading of 124/79 though so that’s good news.

Hmm...if anything I was thinking the ice coffee which was decaf, but flavored from DD, might have been too much sugar for me on an empty system. (I rarely drink these anymore) Realizing some symptoms are worse lying down too, heart pounding and deep breathing around the hiatal hernia area. Perhaps the coffee irritated that area too. 

Felt a bit better last two days so I had to go and mess myself up. Trying to get something nutritious in me next couple hours if nausea can improve a bit. BP still slightly elevated above 130/85.

Something I haven't had happen in quite a while (maybe a year or so), but has happened a couple of times before: 

I know I did this to myself. Went out to a doctor's appt this afternoon without eating. Came back and had a decaf iced coffee without eating or drinking much of anything. I probably dehydrated myself somewhat. 

The symptoms were actually mostly the opposite of what I usually have. Heart was pounding, but heart rate was lower (high 60's - I'm usually 10-15 bpm higher). Light headedness, trouble focusing with vision, nausea, felt like I wasn't getting enough air. Had trouble speaking because I had to force myself to take deep breaths. Some shakiness. 

I felt this was due to dehydration/low blood volume and I just needed to rehydrate myself, but keep urinating out all the water (with some salt) I'm taking in. However, the thing that seems inconsistent with all this is that my BP is slightly elevated (around 135-145/85-92) when I'm reading it should actually be lower if this is what I think it is. 

Can someone help me figure out what the h*** is going on because I know this is going to confuse the h*** out of the ER if I go there. I'm sure some of this is now due to an increase in anxiety with this all going on now too, but there's definitely something else going on here. 

Still trying to hydrate myself out of this. Still feeling like I have to work for adequate air a bit. BP still slightly elevated, but pulse low for me (around 70). 

Wish there were some sort of dysautonomia hotline. 

On 11/28/2019 at 9:50 AM, issie said:

I was just sent this.

 

This is the article that Ravikovitch tried to publish in the 90s about his treatment (it appears at the end of the book) and rejected by the well-known UK immunologist S.T. Holgate. It is a summary of the content of the book for those who do not feel like reading the entire book.

https://drive.google.com/open?id=1qkm0olLzL1XOBB6rte14eJdKR9HkxCj6

Thanks for this. I've had issues reading the book on my ipad because I can't hold my place and have to start and scroll down from the beginning each time. 

If this helping to stop POTS and MCAS symptoms, it would seem to confirm the autoimmune component that's being discussed in another recent thread. At least in certain cases. 

Thanks @Pistol - I guess the feeling in the throat might be similar, more a thick mucousy feeling than acidity and I know these are PVCs that I can feel the pause in my pulse when I catch them. 

I do sometimes get a rhythm that feels like a pounding or vibrating in my chest that isn't in rhythm with my heart beat that may be what you're talking about, but that's different. What I mean is that sensation is just sitting there waiting to be triggered. It's almost as if I catch them and am still, the PVC won't actually occur, but the sensation that makes it feel as if it's about to will just sit there in my upper chest until I do something to physically trigger them (could be one or several)...if that makes any sense. 

Of all the things doctors have directed me to put into my body in recent years, turmeric is probably the thing I've been least concerned about.