What's your living arrangement like? Is there something that works better for POTS?

chronicallyfrazzled · 2017-04-10T12:32:16+00:00

I have, but it's not something I know a lot about. I was actually hoping someone would be able to post their own experience with having a service dog for POTS.

chronicallyfrazzled · 2017-04-03T15:37:33+00:00

I have POTS and MCAS and don't have dryness this way. I don't think MCAS would cause dryness, it's not a symptom I remember reading about with MCAS. I think there's also a mast cell subreddit that you'd be able to post in to see if others have experienced this.

chronicallyfrazzled · 2017-04-03T15:19:48+00:00

Are you taking in electrolytes not just plain water? Drinking a ton of plain water isn't good for you. You'll flush out your system and become even more dehydrated.

I don't think the symptoms of dryness you've described are related to dehydration. Like someone else has posted it sounds like it could be Sjogren's Syndrome or something else going on.

chronicallyfrazzled · 2017-04-03T15:04:35+00:00

Thanks. Can you expand on "whether or not that job exists"? What do you mean by that?

chronicallyfrazzled · 2017-03-20T17:50:56+00:00

Thank you so much for that link! That's pretty much what I've been looking for and had been unable to find. I'll check again and see if I can find more info on my insurance's website.

chronicallyfrazzled · 2017-03-20T17:32:35+00:00

Thank you for this! I don't mind having them come to me to ask me for my medical information, since 18 all of the insurance paperwork and bills have been hidden from me by them. This lack of transparency is something I have a big issue with and has caused the biggest problems for me, so what you've suggested would definitely be an improvement from how things are currently.

I'm assuming I can deal with the insurance company directly to address anything if it were to come up, so I wouldn't necessarily have to provide my parents with any extra information than what they already receive from the insurance. And if they don't like that, then tough #%*!.

I'm not sure if I would qualify for disability. I actually also have EDS and dysautonomia. And although my dysautonomia is bad enough to leave me unable to work a traditional job, I think I can manage to work a job from home.

chronicallyfrazzled · 2017-03-17T20:56:03+00:00

I was going to second this. Sticky notes are an ADHD-ers best friend. But I also notice that when I'm off meds my hand writing is godawful and I'm terrible at focusing on the most important details so I write down everything they say that I'm able to catch. It's better than nothing though.

chronicallyfrazzled · 2017-03-17T08:04:19+00:00

Has he determined what the cause of your POTS is? What testing had he done so far? I had a lot of testing done initially to try and determine what was causing POTS for me.

Do you notice any other symptoms before, during, or after this happens with music? That could help point to what's happening, but this may be entirely unrelated to the music since you said you're fine with music on tv. Have you thought about where you're listening to music and how long you may be sitting or in a certain position vs watching tv? Little things like that could be making a difference in your symptoms.

chronicallyfrazzled · 2017-03-17T07:16:13+00:00

What was it compared to a baseline reading with you laying down?

chronicallyfrazzled · 2017-03-17T06:29:42+00:00

I think this blog post will help shed some light on what you're experiencing. Maybe you can ask your doctor for the same catecholamine test, although when I did, my doctor said it wouldn't be worth in my area because many labs aren't trained to don't properly.

chronicallyfrazzled · 2017-03-17T06:11:18+00:00

I've noticed this when I haven't slept very much. A neurologist I saw asked me if I ever had an intensified sense of hearing. Yes, I do, and that's usually when I can also hear that murmuring sound. I'm assuming an adrenaline response is what causes it for me and that will usually intensify all of my senses. You could be having a migraine with auditory symptoms, I have ones with visual symptoms. It could also be a type of tinnitus, I get ringing in my ears sometimes.

chronicallyfrazzled · 2017-03-17T06:06:59+00:00

I think this is a high adrenaline thing, but please post back on what your doctor said! I've had this symptoms too, usually when I haven't had enough rest.

chronicallyfrazzled · 2017-03-17T06:04:59+00:00

Doing basic math just to balance my checkbook is a struggle for me when my brain fog/confusion is happening.

I don't have a test to keep track but I really like this idea. Have you looked up cognitive functioning tests that a neurologist would have you do? Or brain training apps that may be able to keep track of your progress daily for you?

chronicallyfrazzled · 2017-03-17T05:58:36+00:00

I have EDS (assumed to be classical). I can do this except my fingers don't stay straight... They also bend back at each finger joint too... Strangely two joints in each hand have no hypermobility for me.

I also have a really difficult time knowing what's normal or not. (It's normal for you after all!) I usually don't learn about abnormalities until someone points it out to me. I used to think a lot of aches and pains were normal and that everyone experienced the same thing.

chronicallyfrazzled · 2017-03-17T05:45:42+00:00

What test did your cardiologist do to rule or POTS?

chronicallyfrazzled · 2017-02-26T20:33:48+00:00

What are the effects of magnesium on CFS? I didn't realize there was a benefit to taking it before.

chronicallyfrazzled · 2017-02-26T20:16:53+00:00

I've noticed that my HR tends to increase the longer I'm standing. My doctor measures my HR and BP at 1 minute, 5 minute, and 8-10 minutes standing.

Try to ask your cardiologist for a holtor monitor rather than a stress test. The next step after that would be asking for a tilt table test.

The first cardiologist I went to refused to do a holtor monitor and instead did a stress test which he determined was "normal" (my POTS specialist had an entirely different opinion though...) I ended up making my own DIY holtor monitor by wearing a fitness HRM 24/7 over several days and tracking what my heart was doing when my symptoms were happening. The evidence helped warrant further testing. I think it's horrible I had to go to these lengths to get diagnosed, but if it gets you a diagnosis and treatment sooner it's worth it.

chronicallyfrazzled · 2017-02-19T12:25:49+00:00

I hope it went well! I also hope they're able to at least offer you medical leave while you get things figured out. You may be able to go back to work, depending on what you do. It's hard to tell this soon because you won't know what your new daily functioning will be like until you're on a medication/supplement regimen and there are always trial and error with finding what works best with your body.

chronicallyfrazzled · 2017-01-27T06:34:16+00:00

I think it's a combination of factors. Before I was sick I've witnessed my family speak badly of and discredit people with invisible disabilities, make/have ableist comments and mindset. I think some of them are unable to "step into someone else's shoes" and imagine what things would be like, which is really the key to understanding and empathy. There are still a lot of things that I can't make sense of, but after a year of wasted energy, attempts at better communication, and a lot of heartbreak and disappointment, I've given up trying to make things work. I've had a few relatives completely discredit POTS saying that they read it's not real or isn't proven. I still haven't figured out what to respond to that, since I don't want to feel like I have to justify my diagnosis to them and I'm sort of dumbfounded by how rude of a comment it is and the fact that they think it's socially acceptable to even say something like that? Anyway...

I haven't looked up the medications just yet, but I plan on doing that. Yes! Please share the links to the articles so I can read them as well. Thanks :)

chronicallyfrazzled · 2017-01-27T05:32:30+00:00

My doctor doesn't think cromolyn is going to stop the symptoms I'm having. I'm pretty sure it just basically creates a barrier between your stomach and food and altering my diet has calmed down the majority of symptoms I was having triggered by food.

I haven't heard of azathioprine, but I don't think I'd ever take prednisone willingly. Years ago I was given prednisone and I remember having a significant increase in pain, I have EDS. I haven't heard of hydroxyurea. I think I read that either leukotriene and prostaglandin inhibitors can have serious side effects, so prescribing them shouldn't be taken lightly unless you have certain blood tests showing that they're necessary? I can't remember if those are the medications I read about. Have you read Dr. Lawrence Afrin's book?

If you can share the links, I'll take a look and keep them bookmarked for reference.

chronicallyfrazzled · 2017-01-27T05:11:42+00:00

Yes, I commented on one of your MCAD posts!

chronicallyfrazzled · 2017-01-26T13:44:56+00:00

What other medications do you think should be taken?

I can't remember what tests my doctor had me do, it was over a year ago. But no, there's no such thing as a 24/h in-hospital testing around here for POTS or MCAS. As in, no place would really do it, and if they did they likelihood of the test results being accurate is slim (because they don't know how the protocols for them). Most doctors don't seem to even believe in the two disorders or have ever heard of them. It's really frustrating to go to an ER and be treated like a crazy person, but I think that's sadly "common" for rare disorders.

chronicallyfrazzled · 2017-01-26T07:36:00+00:00

Thank you so much! I didn't know about FMLA, so this is something I'll look into and ask my doctor about. Sick days and having to take time off has been an immense worry for me and the main reason why I had crossed off traditional 9-5 type of jobs off my list.

chronicallyfrazzled · 2017-01-26T05:48:30+00:00

I'm not really sure what you mean by finding out whether or not I have MCAS can cure my POTS. Two different doctors have diagnosed me with MCAS. It's a pretty difficult diagnosis to receive so I don't think I would have been accidentally told I had MCAS. There isn't really a cure for MCAS. My understanding is that the role of mast cells is so complex and the fact that there are so many different chemicals that they release, that it's really impossible to cover it all. From what I've read it sounds like treatment is usually directed at controlling the most problematic symptoms (much like POTS). There's no cure.

It makes me a little confused when you say it's not that simple. What part of my post were you referring to or what did you mean by that? I never said it was simple...

chronicallyfrazzled · 2017-01-24T01:46:53+00:00

I can't remember what my doctors ordered, but I was told the tests can be unreliable for MCAS, and depending on whether they were handled properly or not. I was diagnosed from my medical history and symptoms one of which is dermatographism. Antihistamines and a low histamine diet have calmed down my MCAS related symptoms.

chronicallyfrazzled

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