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Everything posted by Midori

  1. no not yet. I tried to get into doctors in my local but booked until next year
  2. 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.
  3. 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.
  4. 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. 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.
  6. 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.
  7. 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.
  8. 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!
  9. 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.
  10. Thanks so much guys. I’ll give t a whirl this week and let u know how i do.
  11. 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.
  12. Oh how I hope that isn’t the case. I want to try some B12 this weekend as I am borederline deficient.
  13. 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!
  14. 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
  15. 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
  16. 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!
  17. 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.
  18. 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!
  19. 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. I am 36 and have had symptoms of POTS i believe for last 15 years. I have only come to this suspicion recently and wanted to ask a few questions before I go to my doctor next week. My other major symptoms are, brain fog, weakness, lightheadedness, fatigue, IBS, sometimes always feeling very hot. I have been told that I have anxiety which has never sat right with me. I was not shy at all growing up. This feeling came on suddenly in college and has come on and off for decades and I’ve been searching for answers since then. The symptoms always feel better when sitting and go away when lying down. I gave up caffeine because years ago it made the situation much worse. Vitamin D helped immensely as well. It used to be debilitating the symptoms. I recently bought a blood pressure cuff and a little one lead ECG. This morning my readings went like this: (I hadn’t gotten out of bed yet, just woken up) 9:17am 100/64 Pulse: 71 I stood up Pulse shot up to 121 and was still there a few minutes later By 9:21 my pulse had settled down to 104 or 100 but bouncing around a bit. 9:28 121/72 my pulse was still at 105. I often feel dizzy after using the restroom. Today I measured it (slight TMI I know) I used restroom. Sitting: 110/77 Pulse 96 Immedietly upon standing: 117/83 Pulse 128 My questions are: My major question though is this. Sometimes I take it from sitting to standing and no difference. Other times it shoots up. Can POTS be intermitent? Or is it more of a constant? Also, does this sound like POTS from the symptoms I have? Thank you in advance for any insight you guys can provide!
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