KaciCrochets

When I am symptomatic enough that I'm not sleeping, I will get nausea. A couple of weeks ago I could barely eat anything for days. Calming my nervous system in general also calms my GI issues. I think one of the biggest problems with POTS is that there are so few doctors who treat the whole system, you just get specialists who only treat one system and ignore the rest. It really is all interconnected.

I have three children. With all three I had horrible tension headaches and had to take a muscle relaxant until I gave birth, but other than that I was just fine. In fact, my vertigo and hot flashes went away due to the increased blood volume. My son likely has POTS but if he exercises and doesn't just sit in front of the computer all day, he's fine. He works a job where he's on his feet for hours. He knows to drink Gatorade when he starts feeling symptoms. So far he has not needed medical intervention. My daughters have no sign of having POTS. That being said, my symptoms have never been terrible until middle age, and I still do not have much in the way of orthostatic issues. If my POTS was bad I might think twice about having children.

❤❤❤

9 minutes ago, DizzyPopcorn said:

Seriously, what the h*** is wrong with life on earth. It shouldn't be so fricking hard being alive. 

Truer words were never spoken, my friend.

Sleep problems are my biggest symptom. I am tired and ready to go to sleep but then I get brain shocks and adrenaline rushes, and I don't fall asleep for hours. Last night I got four hours, after spending twenty minutes crying from adrenaline and anxiety. Doctors refuse to even look into it. I don't have the tachycardia like you do but I have some irregular heartbeats. My symptoms are always worse lying down than being upright.

I waited seven months to see my dysautonomia doc. Thanks to insurance changes I can no longer see her so I got a referral to neurology a month ago and they are still triaging so I don't even have an appointment yet. They don't have any doctors that treat POTS so I'm afraid they won't make an appointment for me at all, even though I am having new symptoms that could be anything from neuropathy to a brain tumor, not necessarily POTS. I am about to schedule with a therapist to talk about how I have these unbearable symptoms and nobody will help me. At least I know I will be able to get an appointment with psychiatry.

Healthy people have no idea what it's like to be chronically sick. Her attitude is inexcusable, I'd be writing some complaint letters. 

@lieze I'm sorry you get this too, but it makes me feel better to know I'm not the only one. I've had a good week and spent a lot of time doing CBT and trying to work through my deepest fears (pretty much all health and doctor related, I wonder why? 🙄) so when I get a bad flare I won't be so triggered. Last night was the first bad night in a week and I'm really jittery this morning. I practiced my CBT during the surges last night. It kept me from spiraling but sure doesn't make the anxiety feel any more comfortable. It's still there even without anything to be anxious about. I spent 25 years of my life being depressed and I think I prefer that to this. At least with depression I could sleep.

1 hour ago, DizzyPopcorn said:

This makes my blood boil. Without going into politics, why is healthcare not an important part of elections? Surely if its so trash and let Americans die due to lack of cares, its an emergency needing funds asap to correct the situation???? Is no one up in arms doing protests over this? 

The short answer is that profit is more important than people here. All of our systems are very broken and getting worse, but our politicians work for their corporate donors and not their constituents so nothing gets fixed. 

This is the first bad flare I've had so I can't really vote, but I do not have mast cell issues. I do have fall allergies but nothing major, just sneezing and runny nose, I don't even need OTC meds for it. Temperature and humidity seem to make my symptoms worse, maybe due to inflammation?

I've been in a flare since the middle of August. I don't normally flare more than a couple of days but oh boy, this one's been long and brutal. I read on one of my Facebook groups that practically everyone with chronic illness is struggling right now. Hopefully this will pass soon, hang in there.

Insurance is the worst. The only affordable insurance we could get was for doctors in a county that's an hour and a half drive, so for me to see any doctor I spend three hours out of my day driving. My old doctor was 45 minutes away but would have cost an extra $1400 a month to see him this year compared to last year. Two years ago I had a great team of doctors for dysautonomia and EDS, but our old insurance was dropping that network and all the other insurance companies covering them were insanely unaffordable. The US health "care" system is a dumpster fire. Meanwhile, I was referred to neurology but after two weeks they are still triaging so I haven't even gotten scheduled for an appointment yet, and it will be at least three months to get in after they call to schedule. None of the doctors in my network even treat POTS, so this may all be for nothing anyway. 

@p8d I will have to remember that! I do okay right now with the hydroxyzine, but my fear is that it will stop working. It makes me feel better to know of other meds to try. I just need something to keep the surges at bay long enough for me to fall asleep. Once I fall asleep I'm good. Well, good enough.

@Random-Symptom Man I will have to look into the headband earphones, I'm intrigued!

1 hour ago, DizzyPopcorn said:

What about noise cancelling earphones? 

I can't imagine that would be comfortable for sleeping. 

A hyperactive startle response is a huge reason for my awful insomnia. Every little noise sets off an explosion in my head, and a surge of adrenaline. I tried ear plugs but they hurt my ear canals and don't stay in properly, so I've resorted to half a cotton ball in each ear and a beanbag stuffed animal over one ear (the other ear is in the pillow) when it gets bad.

People with hEDS are prone to malabsorption, which leads to vitamin deficiencies in spite of eating healthy, but most doctors don't know that. Most doctors don't even know what hEDS is. And since POTS can affect the GI tract, I imagine there can be malabsorption from that, too. I get tested for vitamin D and iron sometimes, but I've only had my ferritin tested once and my vitamin B levels tested once. Some things, like magnesium, are carefully controlled in the bloodstream but your stores (in fat or bones or muscle) can be dangerously low, and the only way to tell is with a biopsy. So nutrient level testing can be tricky.

Despite insomnia being my primary complaint for years, no one ever suggested a sleep study for me. My sleep is so weird, last week I slept okay with no surges, and then yesterday I was fighting random anxiety all day and I was up all night except for maybe half an hour around 2 am. I am so full of catecholamines I feel really sick and like I want to run fifty miles but I'm so tired. Everything hurts and I spent a half hour crying into my husband's shoulder. My spine hurts and I'm shaky and super hot. This sucks, I don't know why I slept great one night and didn't sleep at all the next, but CBT was not helpful in calming my system at all so my doctor and her suggestions that I see a therapist can bite me.

This is brilliant. I actually can't look at it for more than a second because it makes me feel sick. 😆

50 minutes ago, yogini said:

When not enough blood goes into your brain, it is a natural reaction for the mind and body to start to panic.   I also get POTS symptoms along with PMS which is already a time of the month when I feel more anxious than normal. 

Except this mostly happens when I'm lying down. Unless my heart rate slows enough to not pump blood efficiently when I'm relaxed. But I'd think that would be more of a consistent thing. ???

For those of us with catecholamine surges, it has just been discovered that these surges originate in our bones, not our brains or adrenal glands. Perhaps if they can develop a drug to block osteocalcin we could get some permanent relief?

https://gizmodo.com/your-bones-secrete-a-hormone-that-can-make-you-panic-s-1838053031

Here's more evidence for you. I have been smelling something musty/smoky in my house for weeks and it's been driving me absolutely crazy. Today I finally found the source - a houseplant that I've had for a couple of years but it was pretty dormant until this summer. After sniffing it to be sure that's where the smell was coming from, I got really shaky and jittery. In addition, I spent yesterday at my mom's where I felt fine other than a little dizziness, but after I got home I got inexplicably anxious. I've moved the plant outside and I'm hoping now my nervous system will start calming down again. I think I might get an air purifier, too. 

Welcome! I joined this forum last week to post about about the same adrenaline surge issues. Wish I had definite answers for you, but you are not alone. 

11 hours ago, p8d said:

@KaciCrochetsI know we have/had the same Dr.  can you call/message her asking for a script?  I prefer methyldopa or guanfacine ER to clonidine.

I haven't seen her in two years so I doubt I could get a script from her. I have made some dietary changes that have been helping so far. If UW neurology ever flipping calls me I am hoping to get a scan done to make sure I don't have MS or a tumor causing my issues before I venture into medication.

9 hours ago, p8d said:

Are you hyper POTS?  Before I started an alpha blocker I would get this overwhelming feeling of dread in the afternoon.  It was awful.  Getting physically stronger through PT and sleeping along with the alpha blocker help.

Yep, hyper POTS. I haven't tried an alpha blocker yet, that will be my first thing I ask about whenever I manage to find a decent doctor. 

5 hours ago, DizzyPopcorn said:

I kid you not, not a long time ago i bought a vr headset for my computer. I played maybe twice and now i cant use it... Im a big gaming nerd. Im (well... Was for now) a software developer and played tons of games on pc, modding them etc. Not being able to play sadden me so much. At least i can watch them on twitch.tv. 

I hope that you are still able to do activities with your family.  There's nothing worse than being isolated with an invisible illness

Ugh, my kids use a VR thing, I want to puke just thinking about having that on my head. My husband is a big gamer and my son is going to college for programming and is taking a game development class, so I am familiar with all that stuff. I'm sorry you've had to give up something you love, that really sucks. I am facing that happening to me too, probably sooner rather than later. I'm a musician and my fingers and ability to focus are slipping. On occasion I'll be in the middle of playing and I will suddenly have no clue what I'm looking at, I blank on what the note is or how to play it, it's scary. I'm enjoying what I've got while I still have it.

I hope you're not isolated, either. Getting out of the house is important for a person's sanity.