Potsie1990

Hi love, I’m based in Los Angeles. I can refer a network of doctors that I recently discovered and an autonomic testing clinic! It’s at UCLA cardiac arrhythmia center in Westwood. It’s a bit far but, still close enough it might be worth it. Let me know if you would like them.

YES... comes and goes when I’m at my worst. But luckily it does go away in a few days

Ok guys, so here’s an update. its been a month or so since I started vaping. i moved up the juul with 5% nicotine, still doing 1/2 a day. i am completely without my walker and cane. Still fatigued at the end of the day if I over do it but overall a million times better. I feel like I’m in remission!!!! last Sunday I stopped smoking 5 days before my scheduled autonomic testing, to make sure it was completely out of my system. Sunday itself was not so bad, every day after it was a slow trickle down to where I started. By Wednesday, I was back on my walker and cane. I went to an autonomic testing center at UCLA and did the whole thing, Valsalva, deep breathing, QSART, two different TTT’s, the whole shabang, in one day. F’ing exhausting and felt like I was going to die after. I told my doctors what I was doing and they were amazed, although they could not endorse it obviously. My digestion is better and my symptoms of gastroparesis are alleviated. i can now sleep at night without all the strange terrible things that used to happen to me. My body no longer forgets to breathe. its also been a month without the mysterious traveling nerve pain and joint pain. Turns out, my BP actually doesn’t drop the way that thought it did. It’s on the lower end and I feel better when it rises but it actually goes up when I stand. The electrophysiologist also confirmed it was POTS. So, take it with what you will. But I have been able to drive again normally, breathe, walk, jog if I have to. I feel like a whole new person and I’m forever grateful to finally experience this after a long, gruesome year of failing health. I still have chronic fatigue but I will take what I can get. i ended up stopping the caffeine experiment. Caffeine doesn’t process in my body at all (although for me synsthetic is better an natural) but it makes me so tired.

Before, and before I even knew what was wrong and was diagnosed, which terrifies me to take to take it after. But technically I could have had pots at that time as well. They just suspect it was mild at that time.

Gave me horrific sleep paralysis. Like horrific. I will never touch the drug again.

Congrats!!!! May you live the rest of your life joyfully in remission!

I tried 1/2 a decaf mini pumpkin spice latte from Starbucks the other day... my body did not process the caffeine properly. It made me so sleepy yet restless and just very strange feeling. turns out I can tolerate synthetic caffeine from soda; but not natural caffeine from coffee or tea. try very little first to see how you react. I’m literally only allowed a few sips of soda a day before I go overboard and it’s just enough to give me a boost and help me.

Absolutely not, but before I was diagnosed I did it occasionally, also drank wine occasionally. For me, nothing changes and if I feel better, so be it. I don’t tolerate midodrine and florinef and I choose not to suffer. It is what it is. everyone has their own form of treatment that works. Until I find something else, for now, this is mine. Also so if you want to get technical, caffeine is highly addictive and users become very dependent on the substance. Also comes in many forms, some that are healthier than others. (Diet pills, diet drinks, energy drinks, etc). Caffeine is widely accepted and no one seems to talk about how terrible it is for you, and it can be just as “bad”. And there are studies done on neurological disorders and nicotine and caffeine usage. Obviously it’s not from vaping or smoking, and energy drinks but its getting into your body one way or another. Midodrine and Florinef all come with severe side effects. No pots treatment comes without side effects of some sort. It’s up the patient to decide what they can tolerate. If you dont want to smoke or vape or consume nicotine via patch or gum, then don’t.

One cartridge is about 15mg, and I do about a 1/2 a day. So roughly about 7mg-ish. And yes, you have to keep drinking water, sodium, and stay healthy but when I am feeling a drop or my symptoms, I just have a few puffs and within 25 min it subsides. I had a bad day yesterday as I added some caffeine in a different form which I did not tolerate but honestly, it’s not so bad. I used to smoke hookah pretty often anyway and I suppose it’s definitely a healthier option. I missed it and it helps so, I will take the risk. I have come to conclusion that if I take 10-15 years off my life from this, then so be it. I don’t want to live til I’m 80 anyway if this is how it’s going to be. That’s way too much suffering. on a side note, does anyone know how quickly does the sodium work? Like if I drank some broth equal to 2,220mg of sodium, when should I check my BP for the effects? Or when should I notice a difference?

What meds are you referring to? I’ve tried midodrine with horrific side effects. Florinef messes with my potassium levels. They really don’t have any other option for me. If there is something else I’d love to ask them.

Hi guys, oddly enough, I posted a question yesterday regarding the same thing. so back from 2015-17, I would have a cigarette here and there. At my max, I’d have 3 or 4 a day but that only happened 1-2 times a year. So I smoked very little. Before I was even aware of dysautonomia and POTS, I would have one when I felt lightheaded and nauseous and shaky. I later found out this was a vasovagal reaction that my body would do when my ANS was tripped in whatever way. It would immediately clear up my symptoms about 80%. Which is significantly better than doing nothing at all. I would shake for hours on the bathroom floor nauseous out of my mind, sweating, clammy, the whole nine yards. i started coming down with pots last summer of 2017. I tapered down my cigarette usage trying to be “healthy” since I was working out and all and then added caffeine as advised by my trainer at the time. The caffeine sent me into a full blown pots attack and I have not recovered since. I collapsed last November, landed in the ER and have been declining in health since then. I have not smoked much at all since then because my husband happened to switch to e cigs and I guess I was never addicted. I just stopped one day without realizing it and just never picked it up again. I can not tolerate any vasoconstrictor medications at all. It gives me violent reactions that will take me weeks to recover from. Long story short, i decided to start my day off with a cigarette. My husband went to the store and got me my own e cig (vuse) and I jut puffed on it intermittently throughout the day. I check my BP, and it went up steadily throughout the day. I started at 84/60 (ish) and then finished my day at 119/80! I felt absolutely amazing. All day long. I felt like I could run and I was on a walker 3 days ago. It was also very hot today which would normally make me excruciatingly sick but I was out and about walking around my house, going up and down the stairs, I went to the store, I took my dogs for a walk, it was a completely normal day! Unbelievable. i will continue for the rest of the week and see how it goes. I’m off my birth control at the moment as well, and normally I am super super sick without birth control. It stabilizes something in my body and is a night and day difference. The fact that I felt normal, off BC, and didn’t eat insane amounts of salt (which I hate) is a miracle.

I have to say I’ve heard great things about keto. I was 80% vegetarian (except when I travelled or was at a fancy restaurant) many years for health reasons, and ranged from raw vegan at times to regular plant based. I did get a little worried about being high carb (I ate insane amounts of fruits and veggies) and always felt light and hydrated, but hungry and bloated. Lol Recently my primary asked me to try to eat a “normal diet” for a month and report how I feel. I looked into it a bit and found a lot of people do well on low carb/keto. I think the issue is keeping the weight off long term. I hated calorie counting and I felt it was so beyond restrictive and messed with my mind too much. I don’t have the guts to try full keto, but I will try lower carb. If you do well on it please let me know. The keto flu sounds a bit off putting. Lol definitely don’t want to add anymore symptoms to our list. And to report back on my Vape test. I vaped a few times all day, About half a cartridge. Used the Vuse Ciro Melon. FELT GREAT!!! Holy crap. Hit 119/80. I have not seen this number is many months, if not a whole year. i took my dogs for a walk on my own up hill and around my neighborhood today. Felt a touch tachy and woozy in the beginning (probably from the heat) but kept on going and eventually I worked through it. I was using a walker 3 days ago because I was so weak. I walked today completely on my own. No cane either! I squatted and stood up, I did not feel like I was going to pass out for once. i am not lightheaded, weak, exhausted, short of breath, or in pain etc. I’m not nauseous, GI Tract is working well and no adrenaline surge (yet, although I get those at night and it’s just now 9pm) I will try this for a week and report back. I’m scared today was too good to be true, but it was a great test because it was really hot today. I get really really sick in any type of heat and I even sweat a little! A touch but it’s better than not at all before

You know, I think I’ll try that. Coffee or tea makes me really ill and zombie like, but I’d be interested on how I’d tolerate a soda. I do love and miss Mountain Dew lol I never got sick from them so it might help give a boost too. and yes, when I stopped smoking (my husband switched to an e cig so I just kinda stopped without realizing it) I gained a bit a weight also. I’ve been trying to shed it but it’s that stubborn weight that is so hard to get off. You know, I got up today, checked my BP and it was 84/53 with a 107 pulse. Smoked a cigarette, 15 minutes and a smoothie later I’m at 113/73 with a 73 pulse. And.... I feel great. Still tired but not sick. Will try again in the afternoon and post my results.

Wow! See... I told my neurologist this and she was like it’s probably because it’s raising my blood pressure a bit or giving me just enough of a boost that I can function. I felt great when I smoked * very lightly* (like a few a week) back in 2016. I stopped in 2017 and boom. Extreme pots. Midodrine makes me violently sick. So does decongestants as I was told they have the same effect. see, I knew I wasn’t crazy. But yes, I definitely wouldn’t recommend it to someone who hasn’t done it already. my symptoms are the best when I’m on birth control and a bit of nicotine every now and then. I know it’s a deadly combo but based on my research the blood clot and stroke warning are for people who have high blood pressure and who smoke a pack a day. I’m no where near that, not even by a long shot. Sigh. Well, if it works, it works. Can’t tolerate caffeine either so I will take what I can get. thanks for the responses

I noticed every time I feel excruciatingly nauseous or start having a pots episode... if I have a cig I feel significantly better. I truly hate to admit it, but I can’t tolerate anything else. I’m really thinking about trying vaping more regularly to stabilize myself. I started liquid CBD oil from charlottes web also. Helps tremendously with my weakness and fatigue. Ativan helps too when I have a what is suspected to be a adrenergic storm. Do any any of you vape? I really hate that I’ve come to this but I really feel like we are all going to die anyway. Why suffer? I don’t have kids so I wouldn’t be putting anyone at risk other than myself and my husband who already smokes. Thank yoh

Hi there, no it was not from a TTT, just an informal one done in office. I’m being sent to an autonomic testing center in west LA and they said they will do the TTT there. pots is the only diagnosis I’ve had but I’m scared what if that was a misdiagnosis, kind of like everything else I’ve been told. He really threw me a curve ball. Thanks

I felt great after leaving the chiropractor, id call them and get seen right away. So sorry you are feeling bad

Hi there, so I think the general conclusion with all doctors is an increase of 30+ bpm upon standing for POTS “within” the first 10 minutes of standing. My electrophysiologist that I met today said the tachycardia must REMAIN for the entire 10 minutes. upon standing, I go from 63 to 112, but at soon as I hit 112, about 5-10 seconds later it drops down to about the 80s. can anyone please give any advice? Hes saying it looks more like I have Orthostatic hypotension but my Blood pressure actually increases when I stand. I’m so confused. 93/60 to 104/63

Hi sorry for the late reply, my Tsh and t3 were elevated which meant I’m hypothryroid but I started treatment for it a few months ago so now it’s in normal range. good news is that the doctor said once the tumor is removed, my suddenly severe pots should be relieved and maybe go back to it’s mild form. Fingers crossed.

Thank you for your advice. I think that my body might be reacting to the extremely high levels of hormones in my body just being constantly emitted. Cortisol is a stress hormone so I think if you combine that with an already moderate level of dysautonomia I think it’s a recipe for disaster. I’m praying that once they get all of this under control everything will ease up. I might have to relearn a few things and build my muscles back up but I’m determined regardless of the origin. At this point, I’m going to do anything and everything to get my body back to where it used to be. I’ll talk to my doctor about your recommendations and see if that’s something I should start now. Thanks for that, I really appreciate it

Well, we won’t know for sure until after it’s removed and tested. It’s not a true pituary tumor growing from the gland itself, and more than likely another type of tumor that is growing into a few things in that region so as of now they are unable to truly identify it. But, hopefully it’s benign so I can be done with this after surgery. And yes, I am angry and sad too. They all watched me severely deteriorate and told me there was nothing wrong for an entire year. I was almost happy when they found something in a strange way. But things like this happen I guess. Nothing I can do about it now but get through this next phase and stay positive. But I will say that if I learned anything in this process, it’s that if you truly believe something is wrong you must be persistent. No one, and i mean no one will advocate for your health like yourself.

Thank you, I’ll check for it now.

Thank you for your reply. I agree, I do think that now since we have a target, it’s easier to come up with a plan. And I do think that doctors do work better when they know for sure what needs to be done. I’m so sorry you went through multiple surgeries yourself. I hope you are in the clear now and on the road to health, if you aren’t there already! I will definitely check out the website you gave me. Thank you

Hi there, thanks so much for the reply. Yes, I am in need of reassurances. I have been trying to process this past year and you know what? It’s a great feeling to finally feel validated in knowing something is actually wrong and it’s not something I made up. But... it’s not nearly what I expected. The term brain surgery is a lot for anyone to take in and the unknown is scary. I’m praying that it’s benign and that it’s just the end of it. Yes, and I have extremely high antibodies to the EBV and all of the Coxsackie Tests. Idk what that could mean but it’s there. I think the hardest part is I’ve lost so much trust in the doctors. I mean, to get the dysautonomia diagnoses was a process in itself. But adding this too and the fact that so many mistakes have been made during the process is so frustrating and isolating. And my caregiver that I have is so nice and sweet to me and my mom is flying in. I do have a husband, but he has insomnia and depression so unfortunately everything about my situation causes him to shut down. He tries, but you know. He also works and things so I try not to involve him unless it’s necessary. My other family is completely out of touch. They didn’t believe me when I had the dysautonomia, so I’m not even going to waste my breath about this. I told a few friends and actually my new neighbor who just moved in next door was so sweet and offered help and prayers. I have a few people. I’m trying to let people be there for me in the way I usually am for them. Thanks so much.

Hi All, Please excuse my typing.. I’m trying to type with one hand and I’m also using speak to text on my phone. i have been diagnosed with Pots/dysautonomia back in April 2018 by an ER day physician and later a cardiologist after being sick the whole year prior. My initial sickness started (or got severe enough to do something) when i collapsed one day in November 2017 (week of thanksgiving) and couldn’t walk for two weeks. At that moment, my pots and dysautonomia kicked in and my heart rate doubled any time I changed positions. I could still barley walk without nearly passing out every time. I had extreme muscle weakness. Couldn’t even feed myself and walk to the bathroom on my own. Long story short, after seeing many doctors and having them all tell me it’s heartburn, im a hypochondriac, it’s all anxiety and in my head, and that I’m gonna give myself cancer because I’m convincing myself I have something when I don’t, when I found my thyroid was off on my lab tests, I took it upon myself to find a specialist who could tell me more and maybe help me. i just went to the first endocrinologist my insurance would let me see. He tested me for many things... thyroid panel, cushings, and prolactin. He also ordered an MRI because I told him I was diagnosed with an enlarged pituitary when I was 17. I am not confident that that was even an accurate diagnosis based off the positions and hospital that I went to at the time. It was not Exactly the best hospital So this is December 2017, and he ordered a pituitary panel. Just Cortisol, prolactin and thyroid. All came back High. He then ordered the dexamethasone suppression test and and MRI. my cortisol lowered, (but not properly as we know now) and he misread/misinterpreted the results and told me I was completely fine, nothing to worry about. the same visit we went over the mri results. He said he that it was clear and that it looks like my sickness is not coming from that so I left thinking thank god it’s not a tumor! Fast forward to the last few months. My weakness got worse. I’m using a cane, I’m now using a walker. I have a hard time breathing, I have a caregiver that comes to my home 2x a week to help me with daily chores and take me to my dr appt. I just applied for the handicap placard. Things are not getting better, but worse Fast forward to what’s going on in the past month or two... and I called 50 internal med docs in my area, and I found 1 that was experienced with dysautonomia. He is literally like a Dr house. He deals with all the rare syndromes and ailments. he reviews my case and definitely agrees I have dysautonomia, and says we need to figure out why. He ran a new extensive blood panel for literally everything under the sun and voila, cortisol ( among many other things ) comes back high again. He refers me to this supposed amazing endocrinologist that has a longggg waiting list just to be seen as a new patient but we submit my case as urgent and I was accepted! I called on Thursday afternoon and She saw me literally that following Monday. i brought all my paperwork, and she reviewed everything. I told her that the previous endocrinologist reviewed my results and said that I was completely fine so I’m not exactly sure what she can do for me...especially considering there’s really nothing to be done as I was told. She said the birth control can make the cortisol high so it could just be that. But, she goes through my last dexamethasone suppression test and realizes I did not suppress properly. She thought it could’ve just been a mistake from the lab and that I’ll just redo it with the lab that she recommends and will just go from there. Another week goes by my weakness is progressing even more but I go and I complete all my blood work, my urine collection, and my saliva test. With the healthcare system that I’m using, they give you the results on your patient portal. So I was able to see all my results instantly. Everything came back elevated. My cortisol, my AC TH, prolactin, testosterone, thyroid. The day after I got my test results I collapsed again and could not walk. I called her office and tears asking her to go over the results with me and tell me what this means and what I can do because I’m suffering so bad and I need an answer. She then proceeds to tell me that after I Left my previous appointment with her she just went through and looked at my old MRI that the previous doctor ordered. The official lab report says that they discovered a 1.4 cm tumor on the anterior portion of my pituitary also growing into my hypothalamus and in another section of my brain. So that means the previous doctor either never even read my results, Misread my results, or gotten my results mixed up with another patient‘s. So basically I have been suffering since December with something that could’ve been removed but instead was just neglected. I now have to have surgery to remove it but unfortunately they haven’t been able to identify what type of tumor it is. It is not a classic pituitary adenoma. It is not a prolactinoma nor is it classical Cushing’s disease. They think that this is another type of tumor that happens to be growing and just putting pressure on that portion of my glands and brain. I still don’t know at this time whether it is benign or cancerous. I happened to see a vascular neurologist a week ago, and she was a little confused as to why I have so much muscle weakness. I discussed with her our new findings from the MRI today and we are both kind of Under the impression that it could just be underlying dysautonomia combined with hormonal excess being released from my pituitary gland as a result from pressure from the tumor. Does anybody here have anything similar? She told me that the only solution really would be to undergo surgery to remove the tumor and hopefully that would relieve what is aggravating my dysautonomia. If anyone has any advice on what I can do. Or how I should proceed or what I should ask for I would be eternally grateful. It has been the longest year of my life. I am 27 years old I was active before I got sick. In regards to the Cushing’s that I do have according to my lab test, I will say that I do have some of the symptoms. Although I did not gain an excessive amount of weight I did gain about 5 pounds. I will say that I probably would have gained more had it not been so difficult For me to eat. I am nauseous I have a hard time swallowing, and I also have bouts of gastroparesis. Over the summer a year ago I did gain a huge amount of weight in my face. Like there is a night and day difference between my face a year ago and my face now. So besides my face changing and my muscle weakness and my physical elements I really did not have very many Cushing’s type symptoms. I also told my doc a long time ago I suspected I had hyperadrenergic pots because I have shaking and weakness episodes andadrenaline surges. Do you guys have any recommendations on what I can do for the muscle weakness? Both the specialists are telling me there’s really not much they can do until the tumor is surgically removed and they figure out what kind it is and what it’s doing to my body. The other day I was in tears because I couldn’t even left a water bottle. I couldn’t even move. And it’s unfortunate but I can’t go to the emergency room because I’m just gonna end up staying there for eight hours without having anything productive being done. The doctors won’t be able to help me because I’m a complex case and they will just refer me back to my specialists. Thank you. Sorry for the typos and bad grammar. It took me literally all day to write this LOL