Midori

no not yet.  I tried to get into doctors in my local but booked until next year

2 hours ago, Bluebonnet08 said:

I'm so sorry that you are going through this.  Online you can google "the poor man's tilt table test" and do a little test at home to see if your HR/BP increases while standing.

Three things that have helped me:

1.  Increasing ferritin levels to 80+

2.  Regular IVs keep the attacks down

3.  Low carb/low sugar/no caffeine

 

Hope you start to feeling better soon.

THanks for your reply.  I think those IVs may be a great idea.  How can I get my doctors to do this?  I also think I need to check my ferritin levels. I see a hematologist soon and I will ask her to run some tests.  In the past they have been ok but my b12 is always on the borderline low side.  RBC always slightly under but red blood cell shape and size normal.

As for diet I eat no potatoes, pasta, bread, wheat flour, barely any sugar and zero caffeine.  And I only have one glass of wine..if that, a week. 

Hello guys

I was diagnosed with POTS a few months ago but they think i've had it for much longer.  A supplement containing niacin set it off in late July and since then, while my standing tachycardia is coming down (was 140s now 1115-120s) I get these weird events that have landed me in the hospital a few times since Aug and I don't know what they are...but they really scare me when they happen.

With that very first reaction to niacin back in late July I have been getting these adrenaline type feelings. 

They are coming almost every two weeks.  All but the first happen when  I am either seated or lying down and when I am tired.  I get this feeling like my mind zones for a second (possibly subconsciously noticing something is off), followed by this odd sensation that something is rising- like an adrenaline rush but I'm not sure.  I have a hard time describing it but it's very scary. Usually it stops quickly but when i've gone into the ER it's because it kept coming back.

Here is what I've logged about them

1) The first one came on with the niacin reaction.  I was just standing and all the sudden it felt like something was VERY wrong.  Possibly a blood pressure thing and I screamed for my husband to call 911.

2) That night and the next day I got this same feeling to a lesser extent but it kept starting up over and over and I went into the hospital. Gave me an IV and I stabilized.  each time it comes on my body screams 911. it feels like something is very wrong.

3) Another one a month later.  This time I took my blood pressure. It was 155/125 then dropped to 67/37.  I went to the ER. My potassium was a touch low (3.2) so they gave me some potassium supplements.

4) I got another one 2 weeks later, slammed two coconut waters and felt better in 30 minutes.

5) Another one today.

Anyone have this?  I went to electrologist. she did an echo but said it was fine and said whatever is going on is neurological (hence the dysautonomia I guess)

Any help is SO so appreciative.  I'm so worried this is something really grave and it could get worse but not before i figure out what it is.

21 hours ago, Pistol said:

I am very sorry for all you have been through in all these years! I know how it feels to finally find an answer. Way before I ever even knew about POTS (or even had my worst symptoms) I always thought that one day there would be an explanation why I felt so bad doing what others did so naturally. When I became severely symptomatic I started to research my symptoms online and finally came across POTS - and I knew. It all made sense - all of my life I had it and just always compensated! Until my body said: NO MORE! --- Once I found a knowledgeable specialist it felt like the world makes sense again because he knew what I went through and had an explanation. -- I very much wish for you that you also will find that physician that shines a light on your hidden reality of dysautonomia! 

Thank you so much for your reply. And yes it was only when I too had those severe symptoms recently and came across POTS online did i know.  I'm hoping once I talk to a specialist I will understand what has transpired over the last decade and a half and it will make sense finally.  

5 hours ago, bombsh3ll said:

Hi Midori, I'm sorry you've been through so much and for so long. 

I think 15 years ago it would probably have been much harder to find relevant information online, and the gradual appearance of more and more symptoms over time probably also confounds the difficulty in identifying what may be going on.

I was the opposite - very sudden onset, researched symptoms and came up with POTS diagnosis myself within 3 days by matching symptom presentation, demographic (young female) and orthostatic pulse changes to the description of POTS. Technically diagnosis requires symptoms to be chronic for 6+ months, but time proved me right and after 3 years fighting for a formal diagnosis I got to see Professor Newton in Newcastle UK who diagnosed me based on symptoms and monitored stand test. 

I think it would be really helpful for you to seek out someone who specializes in autonomic disorders and present them with your history, own orthostatic readings and suspicion of POTS. I really recommend being direct about your concerns and the condition you want to either rule in or out, in order to get the best out of your appointment. 

I am in the UK and had to fight to be taken seriously, find a suitable specialist myself and pro-actively organize an out of area referral and funding. 

The good thing is that there are a number of treatment options if you are conclusively diagnosed with POTS or other autonomic disorder, which could really transform your life. 

As yet I haven't found anything either particularly effective or with sustained effectiveness, but I am still looking and having a formal diagnosis is very useful, as well as feeling validated that no you are not crazy and yes you do have a recognized physical disorder. 

Best of luck,

B x

 

 

 

Thank you so much for your reply. And yes I think your right. When it started there really wasn't any information on it really. Once I stumbled upon POTs a year or so ago but I thought it had to do with BP and dismissed it as mine was always good.  Little did I know it pulse and that mine was crazy! lol  And yes, it will be so SO nice to finally have validation.  

After 15 years of issues in multiple systems of my body and so so many doctors I believe that I have POTS syndrome.   I will be going to an internist/ cardiologist this week to seek diagnosis and hopefully get an appointment with a specialist this year.

My progression:

-At 18 I developed IBS.  It was an odd form because it really was just the time it takes for me in the bathroom is very long (15-25 minutes).  I had a colonoscopy done etc and they did not find any abnormalities.  So life went on.

- In my early 20s I started to feel like what I thought was "stress" in circumstances that would never have stressed me normally. Felt like my system was overreacting.  I also started getting fatigue and brain fog.  I started to think I had social anxiety as when standing talking to people made it worse.  This was a surprise to me because I had been an actor when younger and never shy in social situations. But this kind of stress reaction in retrospect due to tachycardia had a cyclical affect.  I would feel stressed and then believe the stress was stemming from that social situation which then would make me even more stressed in those situations.  Like a vicious feedback loop.

- I was pregnant in my late-20s. After the birth of my child my symptoms got much worse.  I was also simultaneously VERY Vitamin D deficient (I was a 6) and was drinking 3 coffees a day for the fatigue. Little did I now the coffee and Vit D deficiency were putting all my symptoms into overdrive.  I couldn't think straight. My brain felt like it was white-washed. I had a hard time finding words.  I would shake.  I noticed if I was holding a cup my hand would randomly let go occasionally.  I also would have these "attacks" that would last for weeks at a time where i felt like my body was in CONSTANT fight or flight mode. I felt so ill.  My head felt so much pressure like it would explode and I cried because I actually felt like I might have a stroke or something it was that much constant pressure in my head. I was short of breath.  The only thing that brought relief: Lying horizontally.  Not yoga. Not meditation. Not tea. NOTHING. Except lying down.  I now understand that that horizontal position was probably the only thing returning my pulse to normal.

- I gave up coffee and got my vitamin D levels up to normal and it cut down on that very strong 24 hour fight or flight reaction but I can still get it around my period. Instead I just have a low ever present hum of a stressed feeling I know now is my tachycardia. 

When my Vitamin D has slipped I can feel it and blood tests have confirmed it.  I can feel the symptoms creep back as well as with coffee or any caffeine.  

- I tested positive in my early 20s for Lyme disease except for one band. whether this is the root cause I am not sure.  I did not pursue this when I felt better with Vitamin D and giving up caffeine. I also had Parvo Virus which can cross react with Lyme disease so did not feel confident in the diagnosis at the time.

-But years went by and slowly other symptoms have crept in.  I have neuropathy in my lower legs in the small nerve fibers as it only affects my sense of temperature.  I also get a phantom itch (neurologic itch) in the soles of my feet.  I've been to a dermatologist.  There is nothing there dermatologically.  I was told that my neuropathy and feet were caused by compression of nerves from toilet sitting, but now I'm not so convinced as I can see small nerves are affected with POTS.  It also seemed very odd to have this kind of issue in my late 20s when diagnosed.  Additionally I have muscle spasms at night in my calves and restless leg syndrome sometimes. I had multiple MRIs for this to make sure what the source was.

-in last 6 months I having trouble not feeling hot all the time when everyone is freezing. 

-I have pre-diabetes despite being very thin and small and more digestive issues creeping in.  I've become more lactose intolerant and am not processing protein as well as I should. I took a protein enzyme during meals that would typically bother my stomach and it eased my discomfort so I think I am now lacking in some enzymes.  

- Last year following an episode of shortness of breath for a whole week I had a focal seizure. I now wonder if the POTS had something to do with this.  The doctors could not figure out what caused it.  I had multiple MRIs to rule out stroke and all arteries etc were good.  They also gave me an MRI to rule out MS and I had no lesions.  

- Additionally, as per usual of POTS, I have unusual hormonal issues.  While my levels appear normal I have symptoms of PMDD withOUT the psychological involvement (no depression etc) although I do get fight or flight feeling around my period which I now understand is tachycardia.   I will have terrible PMS symptoms for WEEKS at a time before my period.  When I looked into PMDD, the hormone levels were NOT different in women with that, but the WAY the body USES the hormones is wrong. This I found intriguing.  The last three months I have taken MACA and this has taken away my PMS symptoms by 90% which is amazing.  Maca also works by not changing hormone levels and the way in which it does work is unknown.  The only symptom that seemed to creep back was tachycardia I believe.  Each month I had to up the dose to keep it down but that is obviously not sustainable.

Recently I took a B-vitamin Complex that gave me what appeared to be a niacin overdose.  As that level of niacin has never bothered me before I believe the vitamin company, like so many, did not regulate their levels properly.   I turned bright red for an hour or two and then had a feeling like my heart rate was going down rapidly (at the time I felt like something was shutting off and it felt like "death" was the only way I could describe it).  A seemingly horrible situation that landed me in the hospital was the impetus for my suspicion of POTS.  Without that experience i may never have known.  I was hospitalized and given an IV, this seemed to help after the multiple "attacks" that messed with my pulse.  I also had balance issues, weakness and lightheartedness that kept me in bed for days.  Looking back I understand why.  Niacin creates vasodialation, hence the flushing affect.  As I believe POTS is a dis-regulation of certain vascular constriction and dilation the vitamin simply made my system haywire more than normal.

After that, for fear something was very wrong though and wanting to understand what was going on, I bought a blood pressure cuff and a pulse thing that tracks afib or arrhythmia.  I started taking my pulse all over the house doing different things and what I found was that from lying down or crouching down to standing brought with a wild change in pulse. My husband tried it- barely a change at all.  My BP has always been even for 15 years: about 110/70 so I never suspected a thing. At doctor appointments i was always seated. 

With this I finally had a physiological explanation for my "anxious" feeling in my chest, fatigue brain fog etc i've had for a decade and a half. Those feelings correspond to the numbers I see.  I would feel short of breath and like I was panicked for over a decade. I knew that sitting or lying down alleviated it but i didn't know why.  This oddity led me to research and here I am now.  Staring at a tapestry of symptoms POTS encompasses, each something I've had for 15 years.

After 15 years of fighting for my health and being my own advocate researching the WHY behind system failure after system failure the next fight I have ahead seems overwhelming but knowing the core of the issue now that possibly unites the symptoms is comforting.  I just started graduate school though, and the idea of also reading medical textbooks in my spare time on POTS (I have a great love of biology and science which helps) makes me feel a bit down.  I am a mix of feelings of relief and weariness.  

Anyway, thank you so much for reading.  I hope that this story finds someone else and helps, so their route to diagnosis isn't as long as mine has been.

I am awaiting my diagnosis for POTS this week, so take what I have with a grain of salt, but if I have slept poorly yes I do.  This morning I felt a bit like that and took my pulse and it was much higher than normal upon waking.

3 hours ago, Pistol said:

@Midori - you are doing well, advocating for ourselves is the best thing we can do. My PCP and cardiologist are not experts but are both willing to learn along with me. I do have an autonomic specialist but he is 8 hours away and I can't just go there whenever I am unstable. The more YOU know the better you will be able to judge the abilities of your doc. --- Have you read the book "the dysautonomia project"? It is an excellent source of information for you, your doc and your family. I bought two from amazon - one for me and one for my PCP. You can get it at the website of the same name or off Amazon. -- Be well, take care of yourself!

Yes, we have to be our greatest advocates. After 15 years of this I feel like so tired and much like I’m suiting up for another battle but I’m also feel great relief that I finally have found the core of so much of my issues (neuropathy, IBS, incredible stress type feeling that only went away with lying down or worsened with pms that I know know is my heart racing). Thank you so much for that book recommendation! I was hoping to find a book on POTS. I will definitely check this out. Thanks  so much! 

21 hours ago, Jessica_ said:

🙌🏻 I am right there with you! You are completely right that tachycardia is just ONE of the symptoms, and honestly not my worst one! I’m sorry to hear it took you 2 whole years of misery before you finally got the help you desperately needed. This is a complicated illness but we shouldn’t get punished for that. 

 I still have a bad taste in my mouth from that neurologist. Who in my mind was going to be the one doctor that would understand what I am going thru and instead she treated me as if I didn’t matter. Because I didn’t meet her criteria. She wouldn’t even speak to me. She just did the TTT and then told her assistant to send me back to my EP.  It was devastating. Since battling this illness I have lost my faith in our medical system. Granted, there are great doctors out there who will treat you like a human being and have compassion. But there seems to be more insensitive doctors who are after money and don’t have time to DO THEIR JOB and get to the bottom of things. Seems they have forgotten who they work for.  Sure I might be steering off topic here but I’m frustrated and venting too! Lol thank god we have this forum, we are not alone! 

I TOTALLY understand what you mean. I have had 15 years of “mystery illnesses”. Doctor after doctor and so many doctors dismissing me only for two or three doctors down the road to figure out the issue. It took 3 doctors just to figure out my peripheral neuropathy as it was only temperature dependent. it’s been a long road. Next week I go in to hopefully get this diagnosis of POTS but I get sort of  weary just thinking about explaining to this doctor, showing her all the evidence etc. it’s so exhausting. 

Thanks so much guys. I’ll give t a whirl this week and let u know how i do. 

8 hours ago, Pistol said:

I saw my cardiologist today and I told him about this number discussion. He says that there are many physicians that are uncomfortable with dysautonomia because they have nothing BUT the tachycardia to go by ( which means they would have to go by symptoms as perceived by the patient without any proof ). That's why they get so hung up on it. He also said that whenever there is a conference for cardiologists and the subject of POTS comes up everyone stops listening or leaves because no one wants to deal with these issues. Also that there are quite a lot of patients that have normal or minimal symptoms but are convinced that they have POTS so the docs need to have a way to differentiate these patients.  

Good to know! Thanks for asking him. 

5 hours ago, Pistol said:

@Midori - I am so sorry that you are dealing with this. I know exactly how scary these episodes are! What I do when these flares come is I lie down and wait it out. Sometimes I try an extra half BB. If that does not help then my doc puts me in the hospital for fluids. As soon as the fluids run in after about an hour I start to feel better and the BP and HR come down. A bolus does nothing - it has to run at 125 or 150 ml/hr. And the longer I get them the longer is the effect. We have found that 1 bag over 5 hours helps for the immediate day but the symptoms reoccur the next day and I need fluids again. 18-24 hours of fluids always do the trick and I go home feeling like a "normal" person. -- I wish you best of luck for your appointment and I hope the cardiologist listens to you and has solutions rather than opinions. Please keep us posted! 

I think you’re right about fluids and bed rest. At the hospital the IV seemed to set me right a bit for a day or so.  ALso lying down gives me some relief.  Thanks for your reply.

3 hours ago, MomtoGiuliana said:

When I was in a POTS flare I had a hard time tolerating B12 and other B vitamins too.  I had a B12 deficiency but I could not tolerate the shot and even orally I had to take smaller than optimal dosages or I would get worse.  I also tried taking a general B complex and felt worse.  I am not sure why this would affect us this way.  Most people say they feel great after taking B12 or B complex...!

Oh how I hope that isn’t the case. I want to try some B12 this weekend as I am borederline deficient.

I wanted to add as well, when they say that 30 bpm, that’s from lying down to standing correct? Sitting to standing will give an increase of 20-50 BPM but from lying it’s much more. lying down can go from 60 BPM up. 

Thanks!

Thank you everyone for your replies!

This is really interesting. I agree with you guys. It’s pronsbky much more nuanced. 

when I took my husband’s pulse the other day he doesn’t even budge when stands up. Exactly the same sitting and standing!! Lol

today I am sustaining quite high all day when I stand around 100-115. Which is enough so make me feel bad. 

Thanks again

Thanks so much. Great to know 

So going to my doctor next week to confirm my diagnosis of POTS.  I know I’ve had it for 15 years I think. 

While all my symptoms had been hovering along the last year or so, one b-complex pill I took two weeks ago has messed up my entire system royally. 

i took a b-complex pill and within minutes turned bright red all over but so red and for so long I was told it was a niacin overdose probably because the vitamin company didn’t regulate its dosage properly. 

A few minutes into the reaction and I lost balance and fell into the wall.  then I thought I was going to die. I really can’t describe the feeling any one way.  Something felt very very wrong suddenly. I know now my pulse must have went through the roof. I had another “attack” that evening and then the next day as well. I have been weak, lightheaded since. It’s been horrible. I also had another one of those attacks the other night. They scare the h*** out of me. 

After buying a small one lead ECG I can see that the feeling comes with a surge in pulse for no reason and sometimes blood pressure, but i think surge in blood pressure happens after from total fear. Since that b-complex  supplement though my POTS symptoms have been SO much worse. it’s like it flipped some switch and it won’t calm down . It’s exhausting.

I hope so much that this flare up will calm down. I’m so sad this has happened. It was more manageable my symptoms but now they are out of control. 

Thanks for reading 

So, many sites say that upon standing upright, from lying down, you should go up more than 30 bpm above your lying down pulse.  What I don’t understand is ‘some’ level of sliding back down still within the criteria of pots?  Or are you supposed to be maintaining that exact initial standing pulse the whole time?

For example for me, if I lie down I’m around 70. I stand up and i shoot up to 120-130 for a few minutes. Then slide down to 105-ish and stay there for the foreseeable future.  Sometimes I may wobble into the 90s. But always that initial stand up is 120 or 130 for a minute or two.  Is this characteristic of POTS?

Was just curious how POTS behaves in the real world with patients and arming myself with knowledge before my appointment with a cardiologist next week.

Thanks so much!

Thanks so much

Thank you for your responses.  That is very interesting to know.

Just now I measured myself, sitting to standing is back to normal!

But an hour before I measured myself from crouching to standing position and it was wild

While crouching I was 65. when I’d stand it would shoot up to 120 or 130.

I’d return to crouching and same thing: 65 or 70

Back up to standing was 120-130 again.

I felt like I would pass out and stopped.

I’m afraid that when I go to get tested it will be a “normal” time.  

Thank you so much for your reply. Yes, I’m just looking for experiential advice.  That is interesting to know there are good and bad days. 

For me it seems to be good/ bad but even throughout the same day.  Last week I measured it and it was abnormal early in the day and normal later when I compared lying down/sitting and standing again.  Anyone else experience this?

Thanks so much!

So sometimes when I go from lying to standing there is a big difference. Like this morning my pulse went from 70 to 120 and then settled at 100 or 110 for the next ten minutes.

Other times there is zero difference.  I don’t know why.

Thank you in advance for any insight you guys can provide!