Bobannon

1 hour ago, Pistol said:

I am not able to take NSAIDS for the same reason. Dysautonomia in my case caused severe GERD and as a result I cannot take meds that are aggressive on the GI tract. What has helped me immensely is Turmeric - a spice that has known and powerful anti-inflammatory properties. For GI problems, especially ulcers etc, my GI specialist ordered a combination of H2 blockers, acid reducers and something called GI cocktail ( Mylanta, viscous lidocaine and phenobarbital ). This mix healed the erosions caused by the increased acid production, including Barrett's esophagus - a pre-cancerous abnormality of the lining of the esophagus.  Make sure you consult a GI specialist for your symptoms! 

I don’t have GERD or anything like that, but I do love anti-inflammatory foods so maybe I’ll go back to having turmeric steamers again since I’m not supposed to be drinking caffeine! Good call. I’ve only ever had episodes of nausea and vomiting but it generally only lasts an afternoon or evening at a time and then it’s back to normal digestion. 

15 minutes ago, KiminOrlando said:

Sorry you are having trouble. Your bloodwork is interesting. Did they test your ANA? Did they say it was negative or was it really mildly elevated? Do you have access to a Rheumatologist? With those kinds of inflammatory markers in your blood, you might benefit from seeing one. I have something called Undifferentiated Connective Tissue Disease. When my Rheumatologist treated the inflammatory condition, my dysautonomia got better. Just a thought.

ANA and rest of autoimmune panel was negative when the liver specialist ran it. The only immunoglobulin that was slightly elevated was IgA. And the thyroid antibody was still present despite having a full thyroidectomy over a decade ago. I still feel like that’s a bit odd because my body shouldn’t be producing thyroid antibody if there’s no thyroid tissue. I might push for that to be rechecked when I go back to the doctor in August because it’s been a year since the last one. I don’t know what else she can look for. I accidentally haven’t had a Paps test in six years but I’m doing that at my next appointment as well because my cycle has also increased in intensity and unpleasantness over the past year too. Trying to rule all of the scary things out.

Also seems weird that the ESR blood level is sometimes normal, sometimes elevated despite the CRP being always elevated. Is that common with POTS?

5 hours ago, Pistol said:

Hello @Bobannon - this all sounds very scary! I also have a history of passing our daily, despite the usual self treatments. Beta blockers commonly cause a loss of energy and feeling tired - most often this goes away after a few weeks, once your body adjusted to being on them. However - ANY medication you take should DECREASE episodes of syncope. You should inform your prescribing physician right away of an increase in syncope. 

In POTS most cardiologists order a beta blocker for the tachycardia, as well as the ectopic beats. Chronic inflammation can be a cause of dysautonomia and the cause needs to be investigated. I too suffer from POTS as well as chronic inflammation, and since my autonomic specialist started me on Plaquenil for the inflammation both inflammatory and POTS related symptoms have improved. 

 

This is a very good idea. Exercise is essential in overcoming POTS, and in a cardiac rehab setting your HR and BP will be monitored during the exercise, so they will be able to not only see what is going on but also assess your tolerance to exercise. When I was at my worst I passed out when I would be active - if that is the case for you they will be right there and report any abnormalities to the physician that ordered the rehab. 

Unfortunately it is the norm that autonomic specialists have very long waiting lists for new patients - most of them over 1 year. In the mean time it is important to have a close relationship with your PCP, who will need to address any serious symptoms such a syncope, chest pains etc. I had to wait one year and in the meantime saw 4 cardiologists that were equally useless in treating my POTS - I hope that is not the case for you. Today most physicians have a basic understanding of POTS, but often that does not go past fluids, salt and beta blockers. I am lucky to have an excellent PCP who tried really hard to control my symptoms while waiting for the specialist. 

I agree with @CJ65 that measuring your HR and BP frequently is important,  and keeping a diary of those numbers as well as your symptoms can be extremely helpful to your physicians. I also keep a note book in which I record any questions I have for the different docs and that I take to appointments with me. That is the only way I can assure that all my problems get addresses during appointments or phone calls. And don;t be afraid to make a pest of yourself - only if your docs know what is going on can they make necessary changes to your treatment. Recurring uncontrolled syncope is NOT OK - so you need to make sure your doc knows about it. 

I’ve been prescribed Naproxen in the past for inflammation but it gave me bleeding gastritis (had the endoscopy and it was normal but blood in stool with horrible diarrhea for weeks). I’m not supposed to take NSAIDS now. It would be good to find out if I can take anything else. 
 

I haven’t really tried speaking with my family doctor all that much because I just figured she wouldn’t be able to help. Maybe a good idea to at least tell her when symptoms are getting worse so we can keep track. Thanks! Good point re: following up. 
 

I didn’t expect the electrophysiologist to treat the POTS, I was just hoping he could rule out a heart problem and educate me about the Holter Monitor result posted to the patient portal but he didn’t address anything other than tell me I have POTS like it’s a new diagnosis. 🤦🏻‍♀️

11 hours ago, CJ65 said:

Hi @Bobannon I don’t have answers for your excellent questions but I do want to say that the diagnostic process is absolutely anxiety provoking, and I think everyone here has felt it at one time or another.  It’s so hard to get thoughts organized when your body is working hard to stay upright. AND trying to get your questions answered during a time-limited  face to face with your provider! Can you email a list of questions to the different docs? I imagine your heart rate decreasing is because of the beta blocker doing what it’s supposed to do. You didn’t mention blood pressure-do you know what is happening with that? Can you monitor it at home?  Some POTS patients respond well to beta blockers and some don’t at all. It does take some time to adjust so you may need to see if your symptoms improve. Feedback to the prescribing MD is important so they can adjust dosage or medication if needed. It’s a lot of trial and error to find the right medication and treatment regimen. I think your visit with autonomic specialist will be very helpful. Hang in there and keep reaching out to your medical team and to your POTS community!

Hey thanks for your response! 
 

My blood pressure was Pre-hypertensive before the beta blocker while resting/standing and dipping down really low upon standing but now seems to be normal with the beta blocker at rest, however I’ve had some trouble taking it within a minute of standing because the machine I have just gives me an error message so it probably wouldn’t hurt to get my blood pressure checked seated/standing at my next in-person appointment. Maybe it’s dropping more with standing up now?

I was worried about the average daily heart rate dropping to bradycardia before starting the beta blockers because it seemed weird given that I’m exercising less now, but my thyroid medication was lowered so maybe that has something to do with it (rechecked a few weeks ago and it was still too high/I was still quite hyperthyroid). I started the beta blocker June 25th at a 68bpm resting heart rate and it’s down to 57bpm resting today. Apparently a drop in resting is normal but at the end of May I was in the 90s resting. You can see how the average daily resting bpm dropped in the teal FitBit graph. Super weird. I tried to communicate this to the cardiologist but he didn’t understand what I was saying at all and it was over the phone so I couldn’t show him. Blergh. He also didn’t even say “ventricular tachycardia” during our appointment so I think he just went off of my POTS complaint and for some reason I felt bullied into being quick/not pushing to talk about more and just shutdown. Feels like I really messed up the initial consult, but he also should’ve read my chart before the appointment or even during and not (seemingly) after and just booked a test for me without any explanation as to why. I’ve figured it out on my own - if there’s any NSVT in someone under 40 years of age they usually investigate for some kind of structural issue in the heart. 
 

I was diagnosed in an outpatient clinic (did an ECG and some standing up tests). I was referred to a dysautonomia specialist (cardiologist) but warned that it could be a very long time before I heard back. I started having trouble standing so I went back to the outpatient clinic for a 48hr Holter Monitor and the report said:
 

“Sinus rhythm average 75bpm, 45 to 169bpm. Very rare ectopy. 1 non sustained ventricular tachycardia of 5 beats long. 1 atrial triplet. Several symptoms of lightheadedness, dizziness, chest tightness and shortness of breath all corresponded to sinus tachycardia up to 162bpm.” So I guess I didn’t have symptoms with the scarier ventricular tachycardia. It was over two of my better, more symptom-free days so that was funny. 
 

The internal medicine specialist referred me to an electrophysiologist cardiologist and prescribed bisoprolol. I’ve been having a pretty rough time on the bisoprolol in terms of stamina and worsening wooziness. I black out every day all day now, whereas before it was a few times a week and I’m trying all of the POTS suggestions (increased salt, electrolytes drinks, water, compression, exercise). Sometimes I get up slowly and think I’m fine and then completely lose vision and start to go tingly, wooshy after five steps or so.
 

I had the initial telephone consult with the electrophysiologist today hoping he’d tell me more about what the abnormal Holter Monitor meant and why I’m on bisoprolol but instead he just said that I have POTS due to chronic inflammation and that he’d refer me back to the dysautonomia specialist I’ve already been referred to as well as recommend that I follow up with my hematologist about the source of inflammation. Also referred to the cardio rehab exercise clinic. So I got off the phone feeling very frustrated because I forgot to mention things during the appointment, he seemingly didn’t even look at my chart, and then about a half hour later received an email that he’s sending me to get an echocardiogram in October. ? Also my heart rate has gone way down in about six weeks and I don’t know if it’s my FitBit calibrating or if it’s heart damage of some kind? (Although from what I understand via very limited research usually heart rate increasing is bad and decreasing is good...)

I’m frustrated with the being referred back to my hematologist for diagnosis because she thought it could be Essential Thrombocytosis (a blood and bone marrow disorder) and then just decided on “Chronic Inflammation due to stress” after undetected Jak2 & CalR mutation genetic testing. It’s just that my CRP is 50, platelets are 600, ESR is sometimes normal, MCH, TIBC, Transferrin are always low and on my last blood test my RBC was high. It feels like something is more wrong, I have a history of thyroid cancer so I’m worried about that or a secondary primary cancer (+30% chance statistically) but I don’t know how to advocate for myself anymore. My endocrinologist says my tumour marker antibody has to go up to 22 before she’s concerned (it’s at 17) and she hasn’t done a scan in many years because she doesn’t think it’s necessary. I know that people can just have POTS and Chronic Inflammation but how do you deal with the anxiety of the possibility of an undiagnosed underlying disease or condition? Do I need to take anxiety meds? Not into the idea of taking meds if they’re processed in the liver because I have NAFLD and still need to have a FibroScan at the end of this month. 

8 hours ago, Pistol said:

Well - for me there was. I would faint or have seizures when HR went above 160 at the same time as my BP went above 150ish/100ish. I could run a HR of 180 without a spike in bP, but could not sustain that rate without eventually fainting. The fainting and seizures appear to work almost like a reset - everything normalizes afterwards. 

I once was on a holter monitor that recorded 3 hours of HR in the 150's ( eventually this led to fainting ). During this time I was - of course - highly symptomatic. My cardiologist said that although the tachycardia itself is harmless, with prolonged periods of HR's as high as you describe there could eventually develop problems, including heart attacks, simply because the heart cannot sustain rates like that for very long. I believe that that is why many of us faint - the heart cannot adequately circulate blood at those rates. You describe that your HR jumps up to above 200 and then slowly lowers again - that should be less of a problem to your heart muscle than a sustained HR in that range, or even lower. 

You mention that your HR spikes and then falls - does it remain elevated at all once it drops or does it eventually go back to normal? And does it ONLY get high when your bp drops, or does it ever get high without a drop in BP and then stay there?

Oh wow your experience sounds truly exhausting. I don’t actually know what my HR does beyond the 2min mark. I’m supposed to do the 24hr HR monitor thing with the cardiologist next. I’m currently looking into some kind of smart watch situation as well because it can’t hurt. I think even if eventually my issues improve it’ll be a good thing to have because of my lack of thyroid gland, it’s helpful to check my body temp and HR for medication dosage monitoring (especially to ensure my body is up to par from a metabolic standpoint for reducing fatty liver).

My HR jumps immediately upon standing and then my blood pressure falls fairly dramatically at the 60sec after standing mark. I can almost feel it falling when I stand in place for prolonged periods as well though (even quicker in the shower or elevator I have to take in my building). My legs get weak, shaky, sort of tingly/painful “pins&needles” and my balance starts to go along with all of my energy. It’s like a “wooshy” feeling and I get quite lightheaded and woozy. If I crouch down on my legs it helps me feel like I can avoid a faint but I don’t feel very stable getting up. It’s been fairly embarrassing in public (which I guess I’ll probably get over). 

54 minutes ago, Pistol said:

@Bobannon - there really is no specific number, anything over 120 is considered tachycardia. The diagnostic criteria used most commonly states " increase of 30 BPM or above 120 BPM within 10 minutes of standing" .

Right. I guess there’s no danger associated with anything over 200 other than likelihood to faint? 

Today my heart rate jumped from 78 sitting to 208 standing and then 180 over a minute before slowly going down again. Is there a specific number to lookout for that should be more concerning or a point where you just decide to avoid standing for a while until you’ve had more salt and water? 

2 hours ago, Pistol said:

I take low dose Ativan, o.5 mg, on evenings when I am too worked up to sleep. When I take it 1 hours before bedtime and avoid electronics etc it puts me out like a light, and the next day i might be a bit groggy but no bog deal at all. But I only use it sparingly b/c of it's addictive properties. Another medication my PCP prescribed for me that helps with sleep is the muscle relaxer Cyclobenzaprine. During flares my muscles tighten up from the elevated adrenaline and I get spasms as well as seizures. So 1/2 of a cyclobenzaprine ( Flexeril ) helps a lot on those nights. It is a non-controlled substance, so my PCP has prescribed for insomnia before.

Clonazepam has similar properties to both meds and isn’t as addictive as Lorazepam (Ativan). Maybe something to consider talking to your doc about? One pill > two. ☺️

Oh it’s about to get embarrassing, but I really like Words with Friends (Scrabble), Redecor (silly interior decorating game), Tetris, & Podcasts (Killer Role, The s*** Show, This American Life, 2 Dope Queens, Revisionist History, My Favourite Murder, Mad Dogs & Englishmen). I also use Planta to help with remembering to water my plants. 

Hmm ok. Bummer. I will ask my doctor. Womp womp.

Interesting!!!! Thanks for sharing p8d & Pistol. Science is neat. I’m going to go on a deep dive research soon when I’m feeling a bit less overwhelmed. For now I will focus on finding decent compression garments for the leg pain so I can get a full night of sleep! I’ve checked out the ones I can order online and my ankle size is one size, my calf size is another size up and my thighs are one up from that based on the size chart! Or something is the right measurement for the top half of my legs based on a size chart but way too large for the bottom half. Beginning to see what you mean re: S-XL sizes not cutting it. Oof.

I actually ordered some electrolyte powder months ago and started taking it in big bottles of water daily before I had even heard of POTS, and I am thinking that maybe I unknowingly was helping manage some symptoms (I ordered it because of a low sodium blood test back in December). I ran out in March and that’s around when I started fainting. Funny! 

I had my first Pfizer dose just over two weeks ago and really only experienced some fatigue and a very, very sore arm (couldn’t sleep on it or lift it for two days), but it went away and I’m still not even sure if the vaccine caused fatigue or if it was my normal. Going for my second in a week and a half. 
 

I think it’s important to consider the risk of getting COVID vs. the risk of the vaccine in regards to temporary or “long haul” symptoms. Ask your doctor obviously, but mine said that the benefit outweighs the risk of not getting the vaccine.

Thanks for answering my questions and being so generally helpful Pistol!!! 

I think it sounds like I should just wait until I see the Cardiologist, but these are good tips for management of symptoms in the meantime.

I was referred to the Hematologist because my PCP couldn’t figure out the inflammation. My liver specialist ran a bunch of autoimmune blood work to rule out autoimmune cause of NAFLD because my diet is pretty liver healthy coincidentally and I don’t have metabolic syndrome, but I do have high cholesterol (she ran ANA, Smooth Muscle, Mitochondria, ENA, DNA Double Strand, Nuclear Antibody, IgG, IgA, IgM, Ceruloplasmin, A1A) and all came back within range. My IgA was high for my age but generally normal in the margins. No Hepatitis or anything so that’s good! Still could be related to my lack of thyroid gland too because I was left hypothyroid for a prolonged period last year. I’m a bit worried that I do have liver fibrosis even with normal liver enzymes as that can be linked to POTS or OH I think? But again, won’t know until after the scan end of July. No COVID or Mononucleosis. I do have a consistent low grade fever, but it never goes above 99.8. My CRP has been between 20-50 and my ESR was 52 once, but went back down to the 30s the last time it was checked. If it was autoimmune disease wouldn’t it come up on the panel the liver specialist ran? 🤔 

1 hour ago, Pistol said:

Also @Bobannon - have you increased salt and fluid intake and wearing compression hose? These measures are ESSENTIAL for blood pooling, and are commonly prescribed for both POTS and OH. They help to prevent syncope as well. Since you are not currently able to stand it is also very important that you do not become deconditioned - do leg and abdominal exercises and attempt standing every hour or so, even if you just stand for a few seconds. 

The Internal Medicine specialist diagnosed me, so maybe I should wait for the Cardiologist that runs the POTS clinic before I believe her. Haha. Hmm. She said that the POTS could be secondary to the inflammation going on for the past six months but that the OH is likely a new onset because I didn’t have the blacking out before the last two months. Apparently the giant leap in HR isn’t typical of OH? Also! Does a POTS doc/cardiologist usually work up the cause of inflammation if it’s secondary? I’m kind of worried it’s a more serious thing and if I get referred back to my Hematologist I don’t know what good that will do because she’s only been concerned about blood cancers so far.

I was told that the Cardiologist could write me a prescription for compression stockings but that in the meantime I should just look for some to order myself as it’s less expensive because I don’t have insurance coverage for prescriptions. I ordered some knee socks and leggings (the leggings do absolutely nothing and aren’t tight enough), while I’m still waiting on the knee sock delivery but I’m now thinking those will be a waste of money too. What should I be looking for when I order them?  

I’ve been eating more pickles and adding salt to food before I eat it. Should I be doing more than that? I’m a bit confused because it says to lower high blood pressure you need to cut down on salt and my baseline is hypertensive 1 or prehypertensive. The IM specialist did mention this though so maybe it doesn’t matter. I’m still able to go on dog walks everyday, my trouble is mostly with standing or getting up from a seated or lying down position and waiting in the elevator or in line. It’s not a great time walking, but I can so I do with some breaks if I feel dizzy. I will try to do more stretches! Especially if things get worse, which they seem to be with the warmer weather and humidity. 

4 hours ago, CallieAndToby22 said:

My testosterone is extremely high and they think Have either PCOS or ADRENAL hyperplasia so with those two disease one of the main visible symptoms is acne. 

Ah I’m so sorry! That sounds rough. Have they tested your cortisol? 

I imagine they’ll discuss hormone balanced BCP with you if it’s PCOS. Sometimes it can help with hormonal acne (the cystic kind around the jawline).

In terms of routines, I have had great success with using various serums from Deceim (affordable) as well as mild cleanser and moisturizer from Cetaphil or Cera Ve. I think the most important thing to do is to treat your face like a sterile surgical field and not touch it, ensure anything that comes into contact with it is clean (pillow case, wash cloth, towel - I don’t even towel-dry my face anymore because I worry it’ll irritate my skin and cause a breakout). Additionally, make sure that you’re letting your skin air dry before applying your moisturizer so that it can breathe before you’re putting on a bit of a barrier. I also put my hair up at night so that my hair doesn’t irritate my face. A clean, hot, damp wash cloth applied to wherever the acne is located can help sometimes if it’s cystic but can also be triggering for POTS so I guess just be careful with that suggestion. The most important thing to remember is that the hormone balance isn’t the only thing causing the breakouts, it’s the thing that is making you more susceptible to them so you have to be extra vigilant about skincare routine if you want to prevent them. It’s more about prevention than treatment. 

If you’re having worse breakouts because of your cloth face mask wearing during the day (I am), it might be helpful to dip them in some very hot water to clean them instead of using any harsh detergents, and definitely don’t wear any makeup underneath. I’ve also seen little guard type plastic pieces that are supposed to tent out the mask a bit and help with your skin’s breathability/level of moisture.

On 8/28/2020 at 10:40 AM, HCD77 said:

I have lost 18 lbs since my symptoms started in October 2019. It is scary weighing 118 lbs at 5’10’’. A year ago I weighed 136. I have always been thin, but I’m so concerned even seeing a dietitian. Between being a prediabetic and eating low carb smaller meals it’s so hard to put on weight. I have a good appetite and eat through the nausea, but still not gaining. I have telling my PCP since October I have unintentional weight loss which should be a huge red flag for all doctors to listen and investigate. I get so discouraged.😞

Yikes! That is concerning. Do you have an Endocrinologist and have your thyroid hormones been within range? TSH, T3 & T4... If you’re on Metformin for prediabetes it can cause weight loss and loss of appetite in general. 

May I ask if it’s safe to wear compression garments at night, or does that depend on the individual? I’ve considered trying this because I often wake up with leg pain but I don’t know if it would be of any use for other symptoms (or safe).
 

Yesterday I brought a chair into the kitchen because I figured it was better to be safe than sorry. I had to wait outside of my vet’s office for my dog on Tuesday and it was very hot/humid so I planted myself in a hover-sit in the doorway and that kept me from completely losing consciousness, although I’m pretty sure a passerby thought I was urinating or high. It is what it is. lol 

I have not yet had issues with sitting but I can only imagine how daunting that must be. Is there some way you can work up to it by gradually increasing your angle in bed in the mornings?

It’s been twelve years since I had a total thyroidectomy due to thyroid cancer and I guess I’d gotten pretty used to feeling “off”. There have been many times where I’ve attributed symptoms as being a dosage issue with my levothyroxine (thyroid hormone replacement). I started to notice issues with healing and recovering from viral infections about three years ago. I started requiring steroids instead of antibiotics (often my family doctor would prescribe two different antibiotics for something before resorting to prednisone or topical steroids). About two years ago my hands were going completely numb for periods of time and when I could feel them/regain grip strength it was like painful pins & needles. I’ve experienced this in my legs intermittently since and was prescribed wrist splints to sleep in for “carpal tunnel”. I was sent for nerve testing at that point and my nerves were fine. I’ve also noticed bruise-like “rashes” on my legs that go away within a day. Occasionally I have excruciating stabby headaches that occur in clusters and last less than 10 minutes on the top left side of my head (same exact spot every time and it feels like a woodpecker is having a go at my brain). I’m now beginning to think these issues could’ve been related to the POTS and Orthostatic Hypotension I’ve just been diagnosed with. I was diagnosed by an Internal Medicine specialist at an Acute Ambulatory Care Clinic via monitoring heart rate and blood pressure going from sitting to standing (60+ HR spike and massive drop in my usually hypertensive 1 BP) after showing up to the hospital because I had blacked out three times in one morning and was having trouble standing. 
I’ve also been seeing a Hematologist for over six months for fatigue, elevated platelets, wbc, crp, esr and chronic iron deficiency. My sodium level was low once when checked with her. She screened me for Jak2 mutation and that came back negative (yay no blood cancer). My ECG was abnormal via left atrial enlargement and nonspecific ST abnormality, but my rhythm was normal so that seems positive. My AM cortisol level was low-normal. I’ve been referred to a cardiologist in my city that runs the only POTS clinic, so I’m very grateful for that. I don’t know when my first appointment will be yet, but I’m getting eager as I can no longer stand for longer than a minute and am waking at night with painful leg cramps. I’m so relieved I went to the hospital and had my blood pressure and HR investigated because my Hematologist was ready to label it “chronic inflammation due to stress” after nearly diagnosing me with blood cancer and call it a day. Oof!

I’m usually in pretty good physical shape in terms of strength and agility but since about last fall everything has been in decline. I now get uncomfortable chest pressure/tightness going up a hill or climbing stairs. I’ve lost about 30lbs since winter (but also every time I lose weight my thyroid replacement dose becomes too high, so it’s very difficult to stay on top of because by the time the adjustment has been made my baseline has changed again via more weight loss caused by overmedication - fun! I was hoping to lose weight for my nonalcoholic fatty liver disease as well but upon repeat ultrasound the weight loss did absolutely nothing to the degree of fatty infiltration and otherwise I do not feel particularly unhealthy at my current weight so I’m indifferent at this point either way, I’d just like to be less symptomatic). My Endo put me on Metformin because she suspected I had PCOS related fatty liver, but my PCOS panel came back normal/negative. I’d like to be taken off of Metformin now because my blood sugar has always been perfect and I feel that it’s the cause for the nausea/vomiting I’ve had trouble with. 
 

If anyone has any insights I’d love to hear them. I’m feeling a bit overwhelmed and lost. Ty in advance! Please enjoy this picture of my dog!