Resting in afternoon causing extreme nausea and head pain

[DizzyGirls]

So, a new symptom that my daughter needs your help with!  For the past week or two, my daughter has been developing severe nausea and headache when she goes to rest or relax in the late afternoon.  This does not happen any other time of the day, only the late afternoon.  Has anyone ever had any experience with this???  Soooo strange.  Thanks in advance for your help!!!

[StayAtHomeMom]

Is it shortly after she eats?

[DizzyGirls]

No, it's not.  She's been having this new symptom every afternoon, as well as a great increase in migraines, and her POTS is gone wacky.  She is seeing an endocrinologist tomorrow as a second opinion for her Hashimoto's.  Her nodule biopsy came back as just that, a thyroid nodule, no cancer.  But, I think her untreated Hashimoto's (previous doctor was taking the "wait and see" approach) has caused this huge upswing in POTS activity.  I'm guessing that this could be a reason for the increased migraines and also the afternoon nausea.  Just wanted to get other's opinions to see if it is something anyone else has dealt with. 

[Pistol]

Often when symptoms occur at a certain time of day consistently it is possible that it is caused by medications. Is she taking any new meds or an increased dose of meds?

[DizzyGirls]

No, no new meds.  I thought about that, too.  Doesn't seem to be.

[Jan]

Is she lying flat when she rests?  If so, maybe sitting upright in a recliner would help.  I am always more symptomatic after lying flat.  

[yogini]

Have you measured her heart rate and blood pressure when this happens?

[StayAtHomeMom]

Is she outside in the sun before this happens?

[DizzyGirls]

Hi all!  Let's see... sometimes she's outside in the sun before this happens, but not always.  She always rests sitting up because she has vertigo 24/7 and if she lays flat, she gets dizzy.  So, not those.   And, no, I haven't measured her blood pressure and/or heart rate when this happens, but, I'm thinking that I should be.  We've recently found links with her bp and hr lately and some of her other symptoms.  I can't believe I didn't think of that!  Her POTS was controlled so well for the last several years and all of a sudden it's all gone to pot!  Sorry, pun intended!  I'm a little punchy as I've been in traffic for most of the day in SF where she saw a new endocrinologist who we were hoping would offer her some treatment for hypothyroid symptoms.  She's got Hashimoto's and she has a ton of symptoms but, because her tests don't come back showing elevated TSH levels, nobody will treat her.  Her bladder infections are that way, too.  If it's not one of those infections that just hits like a ton of bricks (even though she has some symptoms), she has to wait at least a week for it to show up on labs.  One time she waited 2 weeks to go and the doctor said "DO NOT do that again".  We explained why.  Same thing with her TSH levels.  I'm sure she's hypothyroid, but docs won't treat unless it's off the charts. 

Now, all this being said,  she just had a mild episode of the resting and then nausea (this was a little bit more dizziness than normal, but most likely from being in SF traffic for the last 2 hours), so I took her bp and hr.  Her bp was fine 102/72, but her heart rate was 101.  The other night, after laying on the couch watching TV, it was 114!  So, just gave her a propranolol and hope it settles things down.  She sees her new cardiologist tomorrow and he is going to switch her beta blocker to metoprolol ER.  So, we'll see how this goes! 

Any other thoughts, and I'm all ears!!

[Pistol]

Well - this is not exactly advice but … WHY will no one treat her if she is that symptomatic? Where do they want her numbers to be and what are her numbers? ( I am sorry - I just get so frustrated when people are sick but don't get treated because they do not meet criteria in their numbers … this is not math! ) --- Definitely mention these episodes to your cardiologist appointment, often tachycardia and nausea go together. It could be that the ER version could help her, it is possible that at the time of her episodes the concentration of her BB is low. That happened to me when I was on a BB that had to be taken twice a day - I would get tachycardic in the late afternoon. Switching to a ER version helped that. I wish you good luck and please let us know how the appointment goes? 

[yogini]

2 hours ago, Pistol said:

Well - this is not exactly advice but … WHY will no one treat her if she is that symptomatic? Where do they want her numbers to be and what are her numbers? ( I am sorry - I just get so frustrated when people are sick but don't get treated because they do not meet criteria in their numbers … this is not math! ) --- Definitely mention these episodes to your cardiologist appointment, often tachycardia and nausea go together. It could be that the ER version could help her, it is possible that at the time of her episodes the concentration of her BB is low. That happened to me when I was on a BB that had to be taken twice a day - I would get tachycardic in the late afternoon. Switching to a ER version helped that. I wish you good luck and please let us know how the appointment goes? 

It seems she has several complicated conditions.  It might be hard to pinpoint which condition is causing the symptoms.  However if you have dysautonomia it is helpful to track HR and BP.  Those can be easier to treat.  

A beta blocker can be taken every day and that is an option to talk to your dr about if you are finding that her HR is consistently high.

[StayAtHomeMom]

I know it is frustrating but keep trying to find someone that will treat her Hashi's. Is it only her TSH numbers they are checking, or are they checking her T3 and T4 levels as well?

I am kind of stumped to what is causing your daughters symptoms every time every day. The only think I can come up with is a medication. It is the only thing she is doing everyday. Keep tracking it and hopefully something will reveal itself. 

She definitely has complicated health issues. I hope she feels better soon. 

[p8d]

Is she possibly encountering some smell, perfume or something later in the day?  That sort of thing always gives me headaches and nausea., sometimes right away and sometimes a bit later.  Just throwing it out.  Hopefully the beta blocker will help.

[DizzyGirls]

Here's an update on my daughter's symptoms....She has started on the metoprolol and it's been doing good.  Some of her symptoms, like the passing out and the more severe adrenaline surges, have subsided some.   Yeah!  Buuuutttt, she passed out this evening and it was really hard to bring her back.  Uggghhh!  Thought this was better.  She's also still having the nausea in the afternoon if she falls asleep.  She can barely keep her eyes open at times, and she really needs to sleep, but she can't let herself.  Here's a new observation though.....her blood oxygen levels are consistently low.  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%.  I wonder if some oxygen treatments might help.  She always says that she feels better when at the hospital and they put the oxygen on her.  So, now I need to figure out why the low oxygen levels AND why she's nauseous later in the day.  It's starting to creep in to other parts of the day as well.  Just another thought, she's slightly anemic, as well. 

Oh, and the doctor did finally agree to testing her T3 and T4 along with the TSH levels.  My dad, who had his thyroid nodule biopsied the same day as my daughter did (way to keep it in the family, huh!) said that he read that they should be testing at least 5 different things when testing thyroid levels to get an accurate reading.  This guy was a real waste of time, but I'm going to have her levels tested again and see what they say.  Her first endocrinologist said she would treat her if her levels got to 4.5.  This other doc said he wouldn't start treating her until they got to 10!!!  We won't be going back to him! 

Well, thanks all!  Any thoughts, please throw them in the ring, you just never know!!!

[Pistol]

@DizzyGirls - it is possible to have low O2, fatigue and nausea all together from extremely low BP.  I know you said hers was reasonable when you checked it but I wonder what it is right at the time her symptoms start. Also - have they done a CXR recently? I would definitely get one to make sure there is nothing going on like pulmonary embolism or pneumonia . -- I'm so glad they are checkinh het thyroid more properly, finally! Shows you that MD's have their opinions but in the end they need to treat the patient. Best wishes to all of you!!!!!

[StayAtHomeMom]

4 hours ago, DizzyGirls said:

Here's an update on my daughter's symptoms....She has started on the metoprolol and it's been doing good.  Some of her symptoms, like the passing out and the more severe adrenaline surges, have subsided some.   Yeah!  Buuuutttt, she passed out this evening and it was really hard to bring her back.  Uggghhh!  Thought this was better.  She's also still having the nausea in the afternoon if she falls asleep.  She can barely keep her eyes open at times, and she really needs to sleep, but she can't let herself.  Here's a new observation though.....her blood oxygen levels are consistently low.  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%.  I wonder if some oxygen treatments might help.  She always says that she feels better when at the hospital and they put the oxygen on her.  So, now I need to figure out why the low oxygen levels AND why she's nauseous later in the day.  It's starting to creep in to other parts of the day as well.  Just another thought, she's slightly anemic, as well. 

Oh, and the doctor did finally agree to testing her T3 and T4 along with the TSH levels.  My dad, who had his thyroid nodule biopsied the same day as my daughter did (way to keep it in the family, huh!) said that he read that they should be testing at least 5 different things when testing thyroid levels to get an accurate reading.  This guy was a real waste of time, but I'm going to have her levels tested again and see what they say.  Her first endocrinologist said she would treat her if her levels got to 4.5.  This other doc said he wouldn't start treating her until they got to 10!!!  We won't be going back to him! 

Well, thanks all!  Any thoughts, please throw them in the ring, you just never know!!!

Anemia can cause low O2. Has her B12 been checked? Also some people run a little lower. Has she seen a pulmonolgist?

[Pistol]

Totally agree with @StayAtHomeMom - anemia could cause fatigue and low O2, I am not sure about it occurring at certain times of the day though. Worth a checking into!!

[DizzyGirls]

Thanks ladies!  I'll check into that.  I was texting ANCY the other day and she mentioned the same thing.  Even though my daughter's blood levels are just a little low, it would stand to reason, by past experience, that they might be a little more severe than the labs are indicating.  Often her body reacts to things way before they show up in labs.  Think that's why things get missed sometimes, the labs don't seem severe enough, so they get pushed to the side.  My other daughter and I just had a brainstorming session on high iron foods!  Unfortunately, my oldest daughter can't take the iron tablets.  She had taken iron tablets several years ago and it was the first time she had POTS symptoms.  So, we are trying with a multi-vitamin with iron (lower dose) and food.  Hopefully it will be enough!  Thanks for the help!

[mehganb81]

I don’t do well with iron vitamins myself, I have better luck with beef liver capsules.  The heme iron seems more easily absorbed and no nausea.  

 

[StayAtHomeMom]

51 minutes ago, DizzyGirls said:

Thanks ladies!  I'll check into that.  I was texting ANCY the other day and she mentioned the same thing.  Even though my daughter's blood levels are just a little low, it would stand to reason, by past experience, that they might be a little more severe than the labs are indicating.  Often her body reacts to things way before they show up in labs.  Think that's why things get missed sometimes, the labs don't seem severe enough, so they get pushed to the side.  My other daughter and I just had a brainstorming session on high iron foods!  Unfortunately, my oldest daughter can't take the iron tablets.  She had taken iron tablets several years ago and it was the first time she had POTS symptoms.  So, we are trying with a multi-vitamin with iron (lower dose) and food.  Hopefully it will be enough!  Thanks for the help!

Not sure if you can buy it but a read an article a few years ago about an iron fish that you can place in your food while it cooks and adds iron to it. I guess it would be similar to cooking with cast iron pans. 

[Pistol]

@DizzyGirls - I was recently diagnosed with low ferritin and took liquid iron 125 mg and I tolerated it really well - no side effects at all. And after 3 month my ferritin came up from 4 to 21! So - if her labs show anemia - the liquid iron might help! 

[Pistol]

@DizzyGirls - I just had a lightbulb moment: what about a sudden drop in blood sugar? It will cause all of the above and it can occur several hours after eating ( lunch ). It can also be a symptom of gastric dumping syndrome or gastroparesis (both not uncommon for dysautonomia). Just saying!

[KiminOrlando]

Has she had any pulmonary functions testing done? Have they done bloodwork like her ANA? Some autoimmune diseases can do that. My O2 randomly dips. They don't know why, but they know my PFTs are messed up. My lungs don't convert air to O2 in my blood. It is the DLCO score on a PFT. I'm curious if that could be a symptom of dysautonomia. I'm not on O2 because they say it wouldn't help. The converter is broken. 

Did they run a full Rheumatology panel on her blood or did they stop when they diagnosed EDS? 

[DizzyGirls]

I love these brainstorming sessions! 

mehganb81 - beef liver capsules, certainly worth looking into!  Maybe Vitacost?  My dad always says he would cook her up some liver and onions!  Yuck, I said!!!

Stayathomemom - An iron fish!  That's good!  I'll have to look into that.  You know, you just don't always feel like eating those foods that are high in iron.  This would solve that problem!  Ironically, my father-in-law had hemochromatosis.  Just the opposite of anemia. 

Pistol - Liquid iron - sounds like I really need to send in an order to Vitacost!  I like liquids sometimes, because you can fine tune the doses better.  A lot of times, she can only handle small doses at once.  She's really sensitive.  Also, your lightbulb moment!  I love it!  Gastroparesis definitely is something we were looking in to, but her neuro-GI wanted her off of her pain meds before she did the motility study.  I kind of think we don't really need the study, as she has had slow motility since she was born.  It was her very first symptom, and we didn't need a study to figure that one out. 

Kim - You know, she hasn't had a PFT.  I had one a couple of years ago and it was a bit wonky, but it's about the only test she hasn't had yet.  I was actually just thinking about a pulmonologist today.   They HAVE figure out that she does have an autoimmune issue going on.  Her ANA was positive and the titer was 1:160.  For her, that's high. Her C4 is low, too.  She was just diagnosed with Hashimoto's, but her rheumy is wondering about rheumatoid arthritis after looking at her painful swollen knuckles the last time we were in.  I'm wondering about RA, too, even though her RA test was negative, that doesn't always mean a hill of beans to her body though.  She will feel symptoms far before they show up on the labs.  The rheumy did give her the option of starting on Plaquenil just in case it might slow the progress of whatever was going on.  She jumped at the opportunity.  I've always thought she had lupus.  She's had various indicators of it throughout her life.  My mom has lupus.  I know that sometimes people that have Hashimoto's and RA have Lupus. 

Well, it looks like I've got some research to do here!  For starters, I've started her on a multi-vitamin that has some iron in it.  It's something.  I'm going to check Vitacost tomorrow and see what they have in the form of liquid iron as well as the beef liver capsules.  I've also been wondering about oxygen therapy, but Kim, you're right, if the mechanism is broken, that probably won't help.  Worth looking in to.  Might get her an appointment with my pulmonologist and maybe contact her hematologist (been a while since we've seen her) and see if she can run some more detailed labs.  Seems as it's always something.  Poor thing, I just wish she could rest without a pain attack or this horrible nausea.  She just needs a break.  Thank you all for your help!  There is nothing more valuable than a collaboration of people who've been there and done that!!!

[StayAtHomeMom]

I wonder if there is a genetic commonality between hashi's, RA, and Lupus. My mom has RA, 1 sister has Hashi's, and another sister has Sjogren's and Lupus. I know they are all autoimmune but I wonder if there isn't a genetic mutation that causes some autoimmune and not others.