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Eraena

Not Pots, Then What Is It?

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We are all so different. I go into the low 70s systolic but I lose my vision when I get up or move quickly even if I can get my systolic up to 100 or so. I used to be hypertensive even on 3 meds to bring my BP DOWN... so I'm used to a higher BP. I can feel almost the same amount of crappy at any BP,  but of course I'm usually doing my worst at the lowest.

 

I do all kinds of exercise-anything I can tolerate, and I try to vary it. I don't give up when i probably should...

 

I kind of forgot that hot weather was coming :( let's see how low I can get my BP-I'm sure I'll be enjoying many IVs when it gets super hot.

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@RecipeForDisaster - if you used to be hypertensive and now are hypotensive - is it your meds causing that? And if so - could they be adjusted? What brought on the change in your BP to swing from one extreme to the other? 

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1 hour ago, Pistol said:

@RecipeForDisaster - if you used to be hypertensive and now are hypotensive - is it your meds causing that? And if so - could they be adjusted? What brought on the change in your BP to swing from one extreme to the other? 

Interesting point. I had a follow up with a vascular doctor today and I told him my woes. He said maybe I need to stop taking one of my BP meds. I've lost 170lbs and I've cut down on my meds a lot, but it's possible one is causing some issues, not all. Maybe aggravating it. 

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Sorry, should have clarified, I was gradually taken off all 3 hypertension meds years ago as my BP fell to half of what it was. I can't manage to keep my BP up without them! 

 

That's the million dollar question.... nothing in my life changed at all between 150/90 on 3 meds and 70/35 without the meds. I'd love to know why. I probably shouldn't have been hypertensive as an active, healthy eating teen anyway....

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14 hours ago, Pistol said:

@RecipeForDisaster - if you used to be hypertensive and now are hypotensive - is it your meds causing that? And if so - could they be adjusted? What brought on the change in your BP to swing from one extreme to the other? 

IDK about RecipeForDisaster but I think this is part of the dysautonomia in some. I've recently gone through a bad spell in which my BP was going from way too low to way too high in a matter of days. Sometimes from one day to the next or even within a day. Other things in my autonomic system were slinging around too, such as internal temperature control (suddenly going from normal to burning hot to freezing cold on an hourly basis) and GI (my stomach was either not emptying at all or dumping and I either had extreme diarrhea or couldn't go at all - I lost ten pounds in ten days).  I felt as though my body had lost all fine control or buffer and was reacting to any extreme with an overshoot to the other extreme.  I just hung on and tried not to take any BP meds to rescue my BP in either direction unless I absolutely had to. I was very sick but eventually things started to even out some. I'm still recovering from the stress of all that on my body.

So I think this going from high to low BP and maybe back and forth can happen in some people with dysautonomia and is part of the "dys" part. It certainly has been for me.   

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3 hours ago, RecipeForDisaster said:

Sorry, should have clarified, I was gradually taken off all 3 hypertension meds years ago as my BP fell to half of what it was. I can't manage to keep my BP up without them! 

 

That's the million dollar question.... nothing in my life changed at all between 150/90 on 3 meds and 70/35 without the meds. I'd love to know why. I probably shouldn't have been hypertensive as an active, healthy eating teen anyway....

That's so counterintuitive. Why would your BP drop without BP lowering meds? Mine was going down as I lost weight and I cut back. Thing was, the more I exercised, which was just hiking, the lower it would go and I cut back more to where I am now, which is minimal or near minimal doses of metoprolol and lisinopril. I am off lisinopril for 3 days before my neck fusion tomorrow and my BP has raised a little bit. POTS is still there though. 

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39 minutes ago, toomanyproblems said:

Other things in my autonomic system were slinging around too, such as internal temperature control (suddenly going from normal to burning hot to freezing cold on an hourly basis)

I can relate to that. Specifically, with my hands. My fingertips turn from ice cold to blazing hot in a matter of minutes. The hands sort of change colors, but not Raynaud's. Fingernail beds turn purple-ish/blue to red, and the whole hand turns pale to red. Maybe the red color is blood pooling?

My BP is already sinking. And it's not summer yet. Leaves me scared to think if this year is going to be worst than last year.

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15 hours ago, JimL said:

I've lost 170lbs

JimL,

There are case reports of other patients developing dysautonomia following massive weight loss (achieved by gastric band/bypass etc). This could be something to look into for you. 

PS best wishes with your surgery

B x

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27 minutes ago, bombsh3ll said:

JimL,

There are case reports of other patients developing dysautonomia following massive weight loss (achieved by gastric band/bypass etc). This could be something to look into for you. 

PS best wishes with your surgery

B x

I had the lapband done in 2009 and removed in 2018. I lost the 170lbs between June 2017 and december 2018. What preceded this or coincided that I can think could be remotely related: I went to Florida in May of 2018 and did some hiking. Did I get bit by something? Started running on a treadmill in May, did I jar the band or something else and screw things up? Ate somewhat undercooked cod in May. I also tried intermittant fasting in May and doing so, felt like I screwed up my band. Trying to get enough calories in 2 meals in 8 hours was tough with a band, felt a lot of discomfort after this. Worked on a bathroom where I had to tear walls out and there was mold,  sprayed everything down with bleach...All this happened in May. Thing is, at the end of May, I started with gastro issues. EGD in July showed gastritis and H Pylori. Treated and symptoms came back after treatment was over. Got patulous eustachian tube in August, neuropathy in feet and lower legs in September, with drop foot left side. Determined to be fully compressed claudia equina, L4-5. Surgery on Halloween for that. Band was removed in September. During this time I developed binocular diplopia. Went to ophthamologist and then sent to neuro-ophthamologist who said I had 4th cranial nerve palsy. Christmas I started with POTS symptoms. My first guess is an autoimmune reaction from the H Pylori, but I don't know how to prove that. All the standard tests come back normal. I did my own ANA, normal, eye doc id ACHr and that was normal. Normal CRP and sed rate. Now I have more cervical fusion, last time was 2012. Is it my spine? No one knows. THe neuro eye doc at mayo is useless. Just said you've had the palsy for awhile, but I've decompensated. Why? I've never had eye problems in my life. No curiosity on her part. I feel like I am getting reverse gas lit. Everyone is telling me I am fine, but I am not. 

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@JimL b/c of the gastric band, have you been tested for vitamin deficiencies?  I was found to be B12 deficient last year (I am a vegetarian but it never occurred to me or my doctor this is a risk factor for low B12--as is generally getting older!).  People who have had gastric surgery are also at increased risk from what I read at the time.  I had no idea what a toll low B12 can take on your nervous system.  I had a severe POTS relapse last year that disabled me for 2 months--it included a lot of digestive problems which I had not had before with POTS.  Do you take a B12 supplement?  You may want to have your B12 level tested and consider taking supplements anyway even if you are not found officially deficient.  B12, from everything I have read, is safe to take in large amounts b/c it is water soluble.  Apologies if this has already been discussed elsewhere in the forum with you.

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2 minutes ago, MomtoGiuliana said:

@JimL b/c of the gastric band, have you been tested for vitamin deficiencies?  I was found to be B12 deficient last year (I am a vegetarian but it never occurred to me or my doctor this is a risk factor for low B12--as is generally getting older!).  People who have had gastric surgery are also at increased risk from what I read at the time.  I had no idea what a toll low B12 can take on your nervous system.  I had a severe POTS relapse last year that disabled me for 2 months--it included a lot of digestive problems which I had not had before with POTS.  Do you take a B12 supplement?  You may want to have your B12 level tested and consider taking supplements anyway even if you are not found officially deficient.  B12, from everything I have read, is safe to take in large amounts b/c it is water soluble.  Apologies if this has already been discussed elsewhere in the forum with you.

The cardiologist tested me for it and it was 567, which is in normal range. I just take a multi, vitamin C and vitamin D. 

 

On another note, I have surgery today. More cervical fusion. Leaving in a half hour. Wish me luck. 

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Dear @JimL - I wish you best of luck with your surgery!!!! Please keep us posted on your recovery!!!

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On 3/27/2019 at 11:22 AM, MomtoGiuliana said:

@JimL b/c of the gastric band, have you been tested for vitamin deficiencies?  I was found to be B12 deficient last year (I am a vegetarian but it never occurred to me or my doctor this is a risk factor for low B12--as is generally getting older!).  People who have had gastric surgery are also at increased risk from what I read at the time.  I had no idea what a toll low B12 can take on your nervous system.  I had a severe POTS relapse last year that disabled me for 2 months--it included a lot of digestive problems which I had not had before with POTS.  Do you take a B12 supplement?  You may want to have your B12 level tested and consider taking supplements anyway even if you are not found officially deficient.  B12, from everything I have read, is safe to take in large amounts b/c it is water soluble.  Apologies if this has already been discussed elsewhere in the forum with you.

Nutritional yeast is a good thing to add to food to help with B12. Recently was introduced to it. 

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The way I understand it, you can also have a milder form of POTS where the tachycardia doesn't happen everytime (this is how it effects me, I don't always get tachycardia when I stand, but everytime I get pre/syncope, I have Tachycardia (sometimes hypertension apparently, but not hypotension unless I pass out, at which point my BP tanks).

I think for me this is because my POTS is connected to autoimmune, so the symptoms fluctuate - being considerably worse when my arthritis is flaring.

There's also neurocardiac syncope. Obviously NCS causes syncope more, and I think this is generally no tachycardia or bp symptoms other than a full tank on BP when a faint happens.

My guess would be that you have a milder form of one of these. Both can be hard to diagnose if the symptoms aren't consistent. It's still Dysautonomia though, just a lesser form. Most docs treat by symptoms not by the tests (though when my hr came back normal on a standing test my doc did take that as the treatment is working - my first standing test was a 40bpm increase).

To my understanding, some people have a normal TTT and have an abnormal one later diagnosing either POTS, OH, or NCS (or a mixture over time).

I did about a week of BP/hr readings and brought them to my doctor. He found this extremely helpful and told me that I had POTS, but a milder form due to the variations on hr readings.

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On 3/27/2019 at 1:37 PM, Pistol said:

Dear @JimL - I wish you best of luck with your surgery!!!! Please keep us posted on your recovery!!!

Thanks. Came home thursday and everything wore off. Funny thing is I felt better in some ways than I had in months. They gave me steroids before the operation IV and I wonder if I have something inflammatory going on. It made me gain a lot of weight though. 8lbs, but I am down 4 from that now. They did put a lot of fluids in me too.  Blood sugar went up a lot too. Normally 85-90 and it ws 127. Friday I took Tramadol and slept most of the day. that seemed to help a lot. Temps would go up to 100 at night, I'd take tylenol and it would go down. I feel like I am all over th place. Interesting thing is so far no high HR readings and I've been off lisinopril without bad effect so far. Just my throat is messed up from the surgery. 

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On 3/23/2019 at 7:11 PM, JimL said:

They are treating the symptoms and not the cause because that's how they are trained and either they don't know what causes it and they don't want to try to find out or they can't because they don't have the tools yet. Unless someone loses consciousness, they won't have a sense and urgency and depending on where you are, even then. 

I have had several syncope episodes with severe injuries and little warning. I am still struggling to get 1) a diagnosis & 2) help to make me safe when it happens. I was diagnosed with Inappropriate Sinus Tachycardia in 2014, a heart ablation in 2015, so many diagnoses’s since 2011, I have lost count. My fear and concern is the injuries I have suffered when I go down and the inability for us to find a solution for me. I take Midodrine, wear compression stockings, drink 64+ oz of water, add sodium and still have issues. I have implemented meditation, all natural diet, lots of fiber foods and only have enough energy to work. I am now considering disability as I had a syncope episode in October 2018 while working and not so fun. 

This past weekend was a scare when I fell in my bathroom with my right hip and ribs with deep bruising. I struggled to even breathe as I came to. I saw my GP today and she feels so helpless. I am doing more research and think my only option might be a permanent pacemaker to allow me more of a warning before I go down. I truly don’t want to injure myself anymore. I am disheartened that my autonomic nervous system is failing me so much. I see my EP that did my ablation in 2015 on Thursday. Let’s just say the staff knows me by name and appreciates my tenacity and ability to keep fighting. 

November 2017 I fell out of my shower due to a fluctuation of water temperature on my legs after a workout. My shower curtain caught me as I went down and a hit my jaw on the sink resulting in TMJ surgery and now Invisalign to help my bite re-align so I can chew my food correctly.

I am so glad to have joined this group this evening because it helps me not feel alone in the battle of figuring out this awful syndrome we all suffer from to varying degrees. 

Losing consciousness does not necessarily get noticed and treated any different than when I first had issues in 2011. My symptoms are progressing and that is the most worrisome for me. Thank you for listening and sharing your stories. Again, it is refreshing to know I am not alone.  

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@SmileyGal - I am so sorry about all these episodes! I too have been through that - I had to stop working and now m fully disabled because of the frequent syncopal episodes - at work, at home, in the store, at church, in doctor's offices …. You mention that you are considering a pace maker - I used to hope for one as well but the sad truth is that this probably will not fix you. I had several halter monitors and an implanted one - good for 3 years - because my specialist was hoping to record a drop in HR or even a pause before the syncope so that I could have a pacer. Unfortunately that was no the case - all syncopal episodes showed tachycardia, so a pacer was not indicated. Only if they record a PAUSE before syncope would a pacer help. My cardiologists told me that if I had  pacer I would still just pass out . Sorry to be the bearer of bad news. Have you ever had a TTT or halter? --- Regarding falls and safety: I too had falls so violent that I broke bones and got bad bruises. At first I did not recognize when I was developing a faint or seizure but now I am much more in tune with my body and have about 2-3 seconds before, enough to get on the floor or at least lean against a wall. In the shower I always sit on the floor since I even fell out of shower chairs. This way I have avoided many falls. When I am in a flare my husband sits by the tub when I bathe to keep me safe. I currently am in a flare since I have the flu and yesterday I had to crawl out of the bathroom and passed out in the hallway - but at least I was already down! --- I am glad you joined the forum since we all are in the same boat. It was very helpful for me in the beginning to have the support of this forum since it is so difficult to get others to understand. Keep up with informing yourself - and be positive!!!!

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On 3/24/2019 at 6:54 AM, RecipeForDisaster said:

occasionally I get this weird prickly itchy sensation in my legs during exercise, and my color is pretty gray purple.

I get the prickly/itchy, hot feeling in my legs when I have vasovagal episodes (also have POTS). My bp will be low, hr will start to elevate a bit while lying and be pounding, and if I stand I’ll faint after about 3 minutes. Caught my bp at 80/48 once before I had to lie down to stop it.  

On 3/23/2019 at 8:00 PM, Eraena said:

Does anyone else have worsening of symptoms after exercise? Usually brisk walking causes my blood pooling to get real bad. I'm still able to stand, but I'll feel very lightheaded.

Yep, hr through the roof and usually bp too, short of breath if walking and can barely breathe and wheezing if I’ve run. I was diagnosed with exercise induced asthma as a kid and now I wonder if it’s just exercise intolerance related to all of this. Always worse in extreme temperatures. 

On 3/25/2019 at 11:26 AM, Pistol said:

Regarding BP - I have both, high AND low BP. The funny thing is that when I run low ( 80/45 ) I am fit as a fiddle. If I go above 130/80 I am getting unwell and anything over 150's/ 90's causes me to seize or pass out. My sister on the other hand ( she also has POTS ) feels bad once she drops below 150/80!!! She can easily go as high as 220/110 ( symptomatic ) whereas I would have long checked out before I got that high. So - go figure! I guess BP is an individual reading rather an across-the-board number. ( Oh - I can feel the blood of cardiologists starting to boil! This would not go along with many of their theories/ training )!!!

I was just lamenting that I feel the best when my bp is around 135/80, which my cardiologist thinks is too high. But anything lower and I feel like crap! Trying to get out of bed when it’s 90/55 is torture for me. 

 

Lost the last quote, but regarding OP, my tachycardia is all over the place. I’ve had a 95bpm increase, but on average about 50/60bpm increase. Sometimes it’s sustained as long as I’m standing, most of the time it cycles +-10bpm, and sometimes it will rise a bit and then spike a few minutes later and settle back to merely elevated. Other times it seems pretty mild from a low resting bp to “only” 100ish. Your TTT might just not have caught a bad day. I haven’t been able to have one yet, but I’ve seen other say they’ve had more than one before they “failed” one properly. It’s a fickle, unpredictable syndrome. Mine has also changed over the years and I wasn’t always this symptomatic every day. I only had vasovagal when I was younger, then just POTS, now both again, so who knows...

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@Eraena Also - how do I say this with out sounding creepy - are you female? I’ve noticed I’m way more symptomatic at certain points in my menstrual cycle, to the point where I can predict tremor episodes (more heat sensitive) etc. Might be helpful to chart, or find some other pattern. My EP didn’t bat an eye when I told him I wanted to do the holter and 24hr catecholamine he ordered during the week I ovulate. 

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21 minutes ago, Spiders from Mars said:

@Eraena Also - how do I say this with out sounding creepy - are you female? I’ve noticed I’m way more symptomatic at certain points in my menstrual cycle, to the point where I can predict tremor episodes (more heat sensitive) etc. Might be helpful to chart, or find some other pattern. My EP didn’t bat an eye when I told him I wanted to do the holter and 24hr catecholamine he ordered during the week I ovulate. 

Yes, I am. I have noticed worsening of symptoms during my cycle. Usually it's a increase in lightheadedness and fatigue.

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