Resting in afternoon causing extreme nausea and head pain

[KiminOrlando]

With hemochromatosis in your family, has she had both tests for that? Iron can damage her liver if it is just getting stored and not used properly. I was both anemic and had an iron storage overload, but didn't have hemochromatosis. Turned out I had autoimmune hepatitis. Just be careful with that.

Plaquenil sounds like a good idea. I'm on that and they use it for many autoimmune diseases. 

With the positive ANA, there should be a smear pattern beside it on the bloodwork. What does it say? That is relevant. 

I have RA. I tested positive for lupus for a year and a half. There is so much in this realm and MOST of it can cause lung involvement. That is called Interstitial Lung Disease. Two major things here.

1) bloodwork is not the be all end all on autoimmune diseases. There is a thing called sero-negative RA. Bloodwork is negative, but body is full flare RA. This needs to be treated just as aggressively as sero-positive RA. SOME doctors don't believe in sero-negative autoimmune diseases. They refuse to treat them. This happened to me and I ended up with permanent lung damage. I would ask your Rheumatologist what sero-negative RA is and what does it mean to see if you can uncover their mindset. The same is true for lupus. It is likely true for all autoimmune diseases. I saw a stat that said only 80% of lupus patients ever test positive for lupus in their lifetime.  There is a significant percentage that don't ever. The others may take a decade to pop. My RA didn't pop on bloodwork for 8 years. Luckily, my new Rheumatologist recognized it and was already treating me. Don't be afraid of the meds if they want to use them. They sound scary, but they have saved me. I think they also helped my dysautonomia. For RA, they use a low dose of weekly chemo. I inject it myself. 

2) Your body doesn't have to pick just one autoimmune disease. It is called Mixed Connective Tissue Disease (MCTD). I call it autoimmune soup. There can be a little of several things in there and you can kind of make your own custom autoimmune disease which makes it ultra difficult to diagnose because there is no textbook on your specific disease. A cousin to MCTD is Undifferentiated Connective Tissue Disease (UCTD). That just means, 'We know something autoimmune is going on here but it hasn't shown itself yet.' They treat that a little less aggressively, but that diagnosis gets the insurance paying for stuff. Some doctors use those terms interchangeably. I don't think it really matters. At least, it hasn't mattered to me yet.

Have they done any imaging of her lungs? I have nodules in mine. With that nodule on her thyroid, makes me curious. If they find some and she doesn't do well on her PFT, they may do a High Definition CT (HDCT) on her lungs. That lets them check for things like scarring. Turns out, my lungs have nodules and scar tissue which seem to be compounding my problems. 

I hope they figure this out soon. She needs to get her life back to something manageable. 

Kim

[KnickKnack]

On 9/17/2018 at 4:31 AM, DizzyGirls said:

 I have this app that came on my phone, Samsung health, and it has a heart rate, oxygen level, and one that combines the two.   So, I thought to test her oxygen levels this evening when she had passed out.  It was 85%.  That's kind of low.  It would also explain why she feels overwhelmingly sleepy and dizzy too.  I took again a few minutes later and it was still only 90%.  

 

@DizzyGirls Just a friendly warning, I wouldn't rely solely on the phone app. I have the same one and started to check my O2 when I was feeling very symptomatic. The readings were consistently low. Some in the low 80's. It threw me into a panic thinking something was very wrong, but I bought a finger pulse ox machine to measure it against. The finger device showed consistent HIGH numbers. 98-99 usually, while the phone app showed low numbers.

I actually just checked it now. Finger device is reading 98, while the phone one is reading 91. If you own a finger pulse ox, I would recommend using that to get a more accurate reading! Hope you figure things out and she's feeling better soon.

[KnickKnack]

Sorry for my reply going through multiple times. I got an error, so I clicked submit a few times. Is there a way to delete a post?

[KnickKnack]

On 9/17/2018 at 4:31 AM, DizzyGirls said:

 I have this app that came on my phone, Samsung health, and it has a heart rate, oxygen level, and one that combines the two.   So, I thought to test her oxygen levels this evening when she had passed out.  It was 85%.  That's kind of low.  It would also explain why she feels overwhelmingly sleepy and dizzy too.  I took again a few minutes later and it was still only 90%.  

 

@DizzyGirls Just a friendly warning, I wouldn't rely solely on the phone app. I have the same one and started to check my O2 when I was feeling very symptomatic. The readings were consistently low. Some in the low 80's. It threw me into a panic thinking something was very wrong, but I bought a finger pulse ox machine to measure it against. The finger device showed consistent HIGH numbers. 98-99 usually, while the phone app showed low numbers.

I actually just checked it now. Finger device is reading 98, while the phone one is reading 91. If you own a finger pulse ox, I would recommend using that to get a more accurate reading! Hope you figure things out and she's feeling better soon.

[KnickKnack]

On 9/17/2018 at 4:31 AM, DizzyGirls said:

 I have this app that came on my phone, Samsung health, and it has a heart rate, oxygen level, and one that combines the two.   So, I thought to test her oxygen levels this evening when she had passed out.  It was 85%.  That's kind of low.  It would also explain why she feels overwhelmingly sleepy and dizzy too.  I took again a few minutes later and it was still only 90%.  

 

@DizzyGirls Just a friendly warning, I wouldn't rely solely on the phone app. I have the same one and started to check my O2 when I was feeling very symptomatic. The readings were consistently low. Some in the low 80's. It threw me into a panic thinking something was very wrong, but I bought a finger pulse ox machine to measure it against. The finger device showed consistent HIGH numbers. 98-99 usually, while the phone app showed low numbers.

I actually just checked it now. Finger device is reading 98, while the phone one is reading 91. If you own a finger pulse ox, I would recommend using that to get a more accurate reading! Hope you figure things out and she's feeling better soon.

[DizzyGirls]

Well, here's where were at.  Doing good on metoprolol, just trying to keep that at a consistent time every day.  Had a little bit of tachy last night, but took her melatonin and she was ok.  Going to get a real PulseOx thingy today, just in case my phone isn't the most accurate.  Was trying to look up the ratings on them last night, but I fell asleep!  Probably not too much difference in them I would guess.  

I do think there's probably a genetic link between her autoimmune issues, and maybe even her EDS.  I know that if you've got one anomaly, you most likely have more.  She's been tested for hemachromatosis, and doesn't have that.  Fortunately, a few years ago, her hematologist was checking for mastocytosis via a bone marrow biopsy because her tryptase levels were high.  No mast cells in the bone marrow, that's good, so he said MCAS.  An incidental finding was that she had no stored iron in her bone marrow.  

So, for now we are glad she is on the Plaquenil for her autoimmune issues.  It will protect her organs.  We'll keep watching the nausea/vertigo that happens during the afternoon.  Considering getting her a Fitbit.  Might be a good way to record everything. 

[Shannoncr]

i have no answers for you but I know exactly how she feels. I can’t nap during the day or I get terrible migraines & nausea. it’s a really awful feeling being so exhausted but you can’t sleep because if you do, you’ll feel sick.  I’m sorry, I wish I could offer more help 😞

[StayAtHomeMom]

13 hours ago, DizzyGirls said:

Well, here's where were at.  Doing good on metoprolol, just trying to keep that at a consistent time every day.  Had a little bit of tachy last night, but took her melatonin and she was ok.  Going to get a real PulseOx thingy today, just in case my phone isn't the most accurate.  Was trying to look up the ratings on them last night, but I fell asleep!  Probably not too much difference in them I would guess.  

I do think there's probably a genetic link between her autoimmune issues, and maybe even her EDS.  I know that if you've got one anomaly, you most likely have more.  She's been tested for hemachromatosis, and doesn't have that.  Fortunately, a few years ago, her hematologist was checking for mastocytosis via a bone marrow biopsy because her tryptase levels were high.  No mast cells in the bone marrow, that's good, so he said MCAS.  An incidental finding was that she had no stored iron in her bone marrow.  

So, for now we are glad she is on the Plaquenil for her autoimmune issues.  It will protect her organs.  We'll keep watching the nausea/vertigo that happens during the afternoon.  Considering getting her a Fitbit.  Might be a good way to record everything. 

I prefer the Garmin over the fitbit. The Garmin is waterproof and I have swam, showered and did dishes with it. I have had it for a year and an half and just noticed the band is starting to break last night. So I am ordering a replacement band this week, but also thinking about upgrading to the most recent one ($130) because it has a built in O2 sensor as well as the HR monitor. The only draw back is the HR monitor checks HR every 2 minutes. Sometimes I have spikes it misses. But other than that the HR is pretty accurate as far as I have seen. I even bought the same thing for my sons so I can track their information as well (I suspect my oldest has POTS as well as me). Definitely a game changer for me. 

[DizzyGirls]

Thank you!! She's now having vertigo spells at random times and her arms feel real heavy, too.  We were going to attempt a picnic with some friends tomorrow for a short bit, but now I'm not so sure.  Going to look into the Garmin and Fitbit right now.  Thanks!!