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Daily Dizziness and Simply Feeling Off


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Old 01-23-2017, 07:24 AM   #1
ThyroidRose
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Question Daily Dizziness and Simply Feeling Off

To All,

I have been, since mid October of 2016, dizzy to some varying degree every single day. I do not get an entire day off from this feeling but will have a couple of decent hours here or there.

In October it was found that I had low iron and we thought this was causing the problem. However my iron numbers have gone up (ferritin is at 44 now) and yet the dizziness continues.

Also recently discovered was a sinus infection and I am in the middle of a 14 day treatment for that, with antibiotics and Flonase.

Here are my symptoms, I am hoping one of you experts can help me:

Waking up feeling off, with dizziness (not true vertigo I don't believe) coming on periodically throughout the day, mainly with certain head and eye movements.

TMJ like pain on both sides of the jaw.

Some slight nausea but never any barfing.

Neck pain, always on the left side, radiating up from shoulder and behind left eye.

Inability to focus on someone who is talking for more than 15 or so seconds (my eyes want to avert and some dizziness washes over me).

HISTORY: I did dislocate my jaw about 2 years ago (pushed it back in myself) and also have been a long term migraine sufferer. H Pylori was discovered and treated back in September. Subclinical hypothyroidism, currently not being treated.

If anyone has any feedback I would greatly appreciate it. I am going to schedule an appointment with an ENT as well.

THANK YOU IN ADVANCE!

Last edited by ThyroidRose; 01-23-2017 at 07:30 AM.

 
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Old 01-23-2017, 07:55 AM   #2
spm222
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Re: Daily Dizziness and Simply Feeling Off

Hey Rose,

I had similar symptoms - foggy cognition and vertigo-like sensations without the actual spinning, and also a few odd aches.

I went to my normal doc who was clueless and referred me to an ENT where I had balance tests and MRIs with no diagnosis except for migraines.

I then read up on Lyme disease and sought out the proper testing through a lyme-literate doc (LLMD) as regular infectious disease docs are a bit old school in this area. I would up positive for lyme and bartonella and went on extended antibiotic treatment. Here I am now symptom-free.

I'd suggest reading into the lyme disease board on here - it sent me down the path of getting a proper diagnosis where doctors elsewhere had failed me. A lot of good info on that board. Good luck, and hope you feel better!

 
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Old 03-01-2017, 06:33 AM   #3
ThyroidRose
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Re: Daily Dizziness and Simply Feeling Off

I am back to post an update in case it helps anyone. I had a D&C plus Mirena insertion on 2/6 and thanks to the Mirena I have had only some spotting instead of a three week long period, which had become the norm for me. I am pleased to say that I am feeling stronger already, with less dizziness/wooziness. I expect that I should only continue to improve as the months drag on. I am scheduled to have my ferritin rechecked in 2 months and will update again then. So, I think the bottom line is that even if your ferritin is "normal," if you haven't solved the issue of bleeding, you will not truly get ahead.

 
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Old 03-16-2017, 05:28 PM   #4
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Re: Daily Dizziness and Simply Feeling Off

Rose,

Hi, I was wondering with your D&C did you bleed a lot afterwards and did you have to have general anesthesia? Can anyone get the Mirena, I read somewhere that you had to have at least one child, is this true?

 
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Old 03-18-2017, 11:43 AM   #5
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Re: Daily Dizziness and Simply Feeling Off

Your ferritin is still low. My hematologist wants mine over 100. I learned that you won't really feel "human" unless it's at least over 50. I just completed two iron infusions bc my ferritin was 27. I'd ask your gp or hemotologist to give an infusion or make sure you're on a really excellent supplement.

 
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Old 04-27-2017, 04:54 AM   #6
ThyroidRose
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Re: Daily Dizziness and Simply Feeling Off

HI there, sorry to all, seems I missed the messages you posted.

SPM I will definitely look into Lyme disease if the ferritin and thyroid issues get corrected and I still feel woozy, thank you.

Sunny, I think anyone can have a Mirena, kids or not. And I did bleed after the D&C but that was nothing new since I have daily spotting anyway. And yes I had propofol which I don't believe is really considered general anesthesia but it worked, I'll tell you that! Finally my gyn added Lo Loestrin on top of the Mirena to stop the spotting, and it's been working like a charm. He said I can do two months of the Lo Loestrin but then I will have to stop to see if the Mirena is doing its thing. I'm currently at the 3 month mark after insertion and I've heard we need to wait until 6 months to see if it's going to work.

Run, thank you so much for that information. I never did have any infusions and I do wonder if I should have or still should have one. I'm only doing supplements. Really hoping that I'll be feeling better soon as my ferritin is now at 44.

Rose

Last edited by ThyroidRose; 04-27-2017 at 05:02 AM.

 
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Old 06-28-2017, 05:31 AM   #7
ThyroidRose
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Re: Daily Dizziness and Simply Feeling Off

Just posting an update as I'm doing better, still not 100%, but to give others hope. The iron deficiency was definitely half of my problem, and I am still working on the Hashimoto's issue, which hopefully is my final problem.

I am a pescatarian (eating fish only) who was diagnosed with iron deficiency last October. My ferritin was a 6. I felt dreadful. I can now report that I feel at least 50% better, and the remaining 50% of issues I attribute to Hashimoto's which I am now working to resolve using levothyroxine.

I had a D&C with a Mirena fitted in February of this year. I had continual spotting for two months so my gyno put me on Lo Lo Estrin for 2 months and since I have been off of the pills, my period is nowhere to be found. I am hoping it stays this way!

For supplements I used ferrous fumerate 106 elemental mgs, one tablet twice a day. I also ate clams as much as I could as they are very high in iron. My ferritin has gradually risen, and since April I have not taken a single iron supplement. My latest lab result on the ferritin is 77!

I think it's safe to say I am out of the woods of iron deficiency, with one last problem to work on. Just wanted to give hope to others that while it can seem like a long road, you can get there, even if you do not eat meat.

 
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Old 07-07-2017, 07:25 PM   #8
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Re: Daily Dizziness and Simply Feeling Off

I have very similar symptoms and I have lyme disease.

 
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Old 08-21-2017, 09:36 AM   #9
ThyroidRose
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Re: Daily Dizziness and Simply Feeling Off

I'm back to post another update in case anyone else goes through what I went through and needs encouragement.

My ferritin is over 80 at this point and I have stopped the supplements.

I have also started Tirosint and have worked up to 37.5 mcgs for the thyroid issue (Hashimoto's hypothyroidism). Most of the dizziness and lightheadedness is gone!!!

The Mirena is working to control my monthly cycle and I have not had a cycle in 2 months.

Finally, I found that if I do not eat lean protein at around 10 am and again at 3 pm (for instance a chicken breast or some turkey meat) I get the same weird lightheadedness. So I'm left to wonder if I have hypoglycemia (but I do not have diabetes so this would be weird). However overall I am doing great and expect to get even better as the days progress.

 
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Old 08-21-2017, 02:55 PM   #10
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Re: Daily Dizziness and Simply Feeling Off

A lot of this is really relatable.

I was diagnosed with BPPV in my left ear last year but I feel really similarly in terms of being "off" - my dizziness isn't a "spinning" it's just that I feel like I'm always walking on something that is floating in water.

What you said about talking to someone and feeling like you can't hold focus and start to dizzy is something that happens to me a lot.

It's a daily struggle for me because the onset of this mostly came on this time last year and I had a bunch of good months in between where I felt a lot better. I'm fairly certain the BPPV I had is back - but I can't help but just feel generally "off" a lot of times and I wonder if it's something else.

Even before the BPPV, I sort of always felt a bit tired but I went to the doctor a few times and had blood taken and all types of tests run - thyroid, ferritin, etc.

It's so hard because I honestly can't tell if my anxiety is just playing tricks on me the way it so often does or if there's an underlying issue somewhere. I just don't feel like going through more doctors visits and specialists, etc. It's exhausting.

I know this doesn't really help you - I guess I just wanted to share that you're certainly not alone. And it's good to hear that you've figured out a bit about what the problem has been and are starting to improve.

Best of luck!

 
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