jklass44

The article states that millions of people and a very high percentage of people contract this virus. That generally means it is easy to get. Yes it’s mainly a sexually transmitted disease, but children can get it through skin to skin contact with someone who has hand warts and (more uncommonly) through fomites. I’m just saying its something to be aware of in both children and adults because it is so common. We can’t protect ourselves from everything, but vaccines can help.

This article is just reiterating what I said. Am I missing something?

HPV is actually very easy to get too, unfortunately. Up to 80% of people will be infected by this virus at one point in their life according to my research. I agree, males can transmit it just as easily as females. And I know there’s a hundred things out there that can supposedly give you cancer, so vaccinating against this one will at least knock HPV off that list...

@StayAtHomeMom There are many types of HPV so my opinion is it’s better to get vaccinated than to not. That goes for anything! There’s currently a measles outbreak where I live... MEASLES!! In 2019. It’s crazy... I really don’t remember if my parents had me get the HPV vaccines, but I’ve been very prone to palmar and plantar warts my entire life - which is indeed caused by HPV - so my guess is not.

POTS can definitely cause fainting while sitting. Do you have a cardiologist or an autonomic specialist?

It might be beneficial to ask about Ivabradine to control your tachycardia. I also cannot take beta blockers so my cardiologist suggested Ivabradine, and although it took a few months to find a good dose, I feel much more regulated (HR wise anyway) with zero side effects from it! On top of that, I take Clonidine to control my blood pressure. Best wishes.

The fact that your headaches get worse throughout the day makes me think they have an orthostatic component to them. Do you notice that they ease up after laying down and resting? I’ve suffered from headaches and migraines since I was a teen. Never been able to find a cause, (probably just a dysautonomia thing) but I’ve been able to keep them at bay for the most part by loading up on naproxen, laying in a dark room with a cold cloth and staying hydrated. I hope you find some relief soon and that the neurologist can help!

I'm a big movie go-er as well and on occasion I've had these sensory attacks in the cinema... It doesn't happen all the time though. When it does I get really dizzy, almost like motion sickness, my heart rate goes up and I get a wicked headache. The first time it happened I thought I was just really excited about the movie or something (haha) but it's happened a few more times since then so who knows. I usually just take some ibuprofen before I go to a movie now just in case. Does this happen to you if you watch movies/tv at home?

I get very drastic temperature fluctuations too, similar to what your friend describes; freezing cold (lips blue, extremities blue, entire body shivers, cold sweats) and also very hot (face and neck go bright red, feel like my skin is burning, etc) I don’t really have a solution for you, I’m sorry, it’s just always something I’ve dealt with. I keep cold water available at all times and cool cloths (if I can) in case of those “hot flashes” and also have tea, mittens and warm packs available for the “cold flashes”. I don’t have anxiety, but I can see how this symptom would add to it! Hopefully he finds some relief and can see that doctor soon... Until then let him know he’s not alone!! Best wishes.

@MeganMN From my own experience, I had to self advocate a LOT. You have to willing to be open and honest with your doctors - if something isn’t working (or if something is working!) they need to know about. A symptom of taking beta blockers unfortunately is lightheadedness and dizziness which can sometimes take some getting used to until your body is accustomed to it. However, if it’s impairing your daily function this much I would again say to contact the doc that prescribed it. If he/she is not taking your concerns seriously... BYE! On to the next! Not every doctor will fit the needs of every single person, so it’s important that you find one that will work with you and LISTEN to you!! Like you said, you know your body best - I said that exact thing to many doctors throughout the years so you’re not alone!!

I agree with @Pistol - finding a kind and attentive PCP can make all the difference! I went through a few until I found the one that I knew had my back. He’s been amazing at helping advocate for me and he never complained when I found myself in his office multiple times per week. This illness sucks, and unfortunately there are some things we just haven’t to learn to live with... But it helps having a great PCP to work through that list with you! Keep looking and best wishes

My chloride levels are also always slightly high. I don’t salt load, so for me it’s most likely due to dehydration - No matter how much water I drink it never seems to be enough! Is your blood sodium also high? I agree with the others and make sure your kidneys are functioning properly!

It's normal for your BP to drop low at those hours - your body doesn't (or isn't supposed to) release epinephrine and norepinephrine in the middle of the night. It has to do with your circadian rhythm aka your sleep/wake cycle. A reading of 100/77 at 3am sounds perfectly normal to me. I have hyperPOTS, and while I generally have hypertension, I've also experience drops in BP as low as 80 systolic. Now if you are having other symptoms along with a wide range of BP readings, then I would suggest asking your doctor to take a look at your meds again as he/she may want to make some adjustments to better control the swings. Best wishes!

Unfortunately I am on the opposite end of the spectrum - My normal temp sits around 36C but I’ve had temperatures as low as 33.5C before. Have you and your doctor been able to rule anything out? Chronic infections or inflammation?

Sorry to hear that. Have you spoken to your doctor about these episodes? If you’re having so many surges it may mean you need an adjustment in medication! Best wishes.

I’m sorry you’re having such a rough time - I can totally relate! How long have you been on the propranolol? Personally, I had to try about 8 different medications in order to find one (actually two) that worked well in combination for me. I’m not symptom free by any means, but my days are a lot more manageable. How many hours do you work per week? I too work in the medical field and have had such a decline in how many hours my body can handle. It definitely wasn’t an easy thing to accept - I love my job - but there comes a point where you can’t continue to push yourself through symptoms. Can your GP help you out until you see your EP again in two months?

I have RUQ pain too, especially after I eat, and was also convinced my gallbladder hated me... Only ever had ultrasounds though and they were also normal. Have you found anything that helps relief it?

I was diagnosed with hyperPOTS almost a year ago, but I’ve suffered from symptoms for about 7years. Some symptoms have gotten better due to life style changes and medications. Other symptoms - like GI issues - have not gotten better (but no worse either). What I am able to do varies from week to week. Sometimes I am able to go grocery shopping, go to the bank, and have coffee with a friend all in one day, but other days I am housebound. Standing for long periods of time is still an issue for me though due to muscle weakness HR before meds would go up to 200 at times, but now on medication it’s generally between 80-120. BP is mainly controlled now but I still get occasional spikes.

@Stark Was it a small amount like drainage of earwax or was it a significant amount of fluid? Perhaps get checked for CSF leak? I’ve heard that can cause fluid leakage from the ears/nose etc.

@MeganMN My advice... Try it. I’ve been taking Ivabradine (Corlanor) since last fall and I’ve had much more success with this drug over many others. I tried multiple beta blockers and calcium channel blockers over the years and I suffered from every side effect in the book, much like you it seems. My chest pain was worsened upon taking BBs and CCBs but since being on Ivabradine I rarely get chest pains anymore (unless I end up pushing myself during a certain task or something when I know I shouldn’t). Because you’re also very sensitive to medication, I would recommend asking to start at the lowest dose. I started at 2.5mg, attempted to go up to 5mg, and even that was way too much so I went back down! Sometimes I still find my HR to be a little bit too high when I’m standing up, so my cardio suggested I try 3.75mg for a couple weeks and see how that goes. Even if that dosage doesn’t work out, I’m definitely staying on the 2.5mg because in hindsight it has lowered my HR significantly and with zero negative side effects!! Best wishes.

I’m so sorry you’re going through all that. Is there anything that may be triggering your flare ups? Does your cardiologist have you on any medications? (If so it might be time to re-evaluate) One of my first symptoms was severe chest pain/pressure/squeezing, and I too would go to the ER, especially when it was accompanied by tachycardia. I had dozens of tests throughout a couple of years and everything always came back relatively normal. The only thing that helped me through those events was IV fluids, but I wasn’t lucky enough to always have a doctor in the ER that would give them to me. Are you working full time right now? I found that with a decrease in my work week hours, plus new medications, my chest pain has lessened significantly. I hope you find something that helps - best wishes!

I’m sure it wouldn’t hurt to get your electrolytes checked, especially if you haven’t had bloods pulled in a while. It’s a simple test so if you ask your doctor it probably wouldn’t be an issue

It’s normal for your urine to be darker first thing in the morning. When you sleep you’re not staying hydrated therefore your urine is much more concentrated. As the day goes on and you begin to drink more water, as you said, it begins to dilute and turns a lighter shade of yellow or even sometimes clear. It’s generally nothing to worry about unless it brings on other symptoms like bladder pain, foul smell, etc. If you become more concerned (sounds like you need a good water/salt ratio due to your conditions) then I would bring it up with your doctor next time you’re in. Best wishes!

My doctors and my pharmacists both sometimes tell me different things... Despite that, I’ve never had any issues, but everyone is different. I feel you on the congestion that won’t give though - so annoying!! Hope you find some relief soon.

Sounds to me like you haven’t found a doctor that understands dysautonomia - How frustrating and I can totally relate! It’s good to hear that you’re still trying to find one. Keep at it! I was diagnosed by a cardiologist with an interest in POTS (not technically a specialist). My HR and BP both increase upon standing.