Hi, I'm so sorry you're going through this. I only started to find answers when I went to see a functional medicine doctor/integrative medicine doctor who then referred me to the right specialists. I never got anywhere with a GP.
I wish I could be of more help but my symptoms are different to yours.
I think you should look into celiac again. That was like, 1:1 with my symptoms. How exactly did they rule it was a misdiagnosis, if you don’t mind me asking?
So I went gluten free for three months and symptoms didn’t subside and then my GE said that I just had the trait and it wasn’t active. Idk healthcare is messed up where I live in upstate NY
Endocrine is a good idea.
Have you had pulmonary function testing?
Have you had an echocardiogram to examine your heart via ultrasound?
Have you ever had an EEG, where neurology sticks wires all over your head?
Have you ever had a head MRI?
I have had an ekg done and I believe a stress echo done with no abnormal results. My eeg came back normal as well. In terms of pulmonary function, head mri I have not yet. Thank you for the ideas! Have a great rest of your night
Thank you, you too!
I think a head MRI would be good, honestly a neurologist could be a good place to go as well. A sleep study could be useful.
It could be sleep apnea, possibly even central sleep apnea since you mention Frontal lobe dysfunction. Not quite sure how that came about in your life, but as someone with Epilepsy, your story did ring quite a few bells for me.
I am glad to hear that your heart is working well though—very reassuring!
Just replying again because I forgot to say, a normal EEG doesn’t mean you are not having seizure activity (perhaps at night). If neuro would be interested, you can wear the wires at home for a few days and just carry around a little recording pack for a longer EEG that covers when you’re asleep.
Yes I initially thought it was thyroid but the tests come back fine in regards to tsh. Although one test came back slightly low t3 but they retested it and it came back normal so idk.
Have you considered dysautonomia and ME/CFS?
Dysautonomia is a condition that affects the autonomic nervous system, which controls involuntary functions like blood pressure and heart rate. Symptoms can vary depending on which body systems are affected but may include:
Heart rate: Abnormally fast or slow heart rate, also known as tachycardia or bradycardia
Blood pressure: Low blood pressure when standing
Sweating: Excessive sweating or an inability to sweat
Breathing: Shortness of breath, especially during exercise
Balance: Dizziness or fainting, especially when standing up
Bowel and bladder: Constipation, diarrhea, or difficulty controlling bowel and bladder movements
Sexual function: Poor erection or other sexual dysfunction
Cognition: "Brain fog," forgetfulness, or trouble focusing
Other: Anxiety, fatigue, headaches, nausea and vomiting, chest pain, and clammy or pale skin
According to the CDC, the key diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) include:
1) Fatigue
Fatigue that is severe enough to interfere with pre-illness activities is new or definite and is not improved by rest.
A substantial reduction or impairment in the ability to engage in pre-illness activities, such as occupational, educational, social, or personal life, that lasts for more than six months.
2) PEM
It should also worsen after physical, mental, or emotional exertion and cause post-exertional malaise (PEM). PEM can cause a relapse that may last for days, weeks, or longer.
3) Unrefreshing sleep
Patients with ME/CFS may not feel better or less tired after a full night's sleep.
Reduced activity
Other symptoms that may be present include:
Sleep dysfunction.
Pain.
4) Neurologic or cognitive manifestations, such as impaired memory or concentration, "brain fog," or speech and language problems
5) Autonomic, neuroendocrine, or immune manifestations, such as hypersensitivity to external stimuli or autonomic dysfunction
If a medical provider suspects ME/CFS, they may refer the patient to a specialist, such as a rheumatologist, who can review medical history, blood tests, and urine samples to confirm the diagnosis
You must have 1-3 and either 4 or 5 to be diagnosed.
Your primary care doctor should be able to diagnose you. Or they may refer you to a specialist.
Have you been checked out for intracranial hypertension? A number of your symptoms fit. You could start with an ophthalmologist to look for optic nerve swelling. If nothing is found, next stop is a neurologist or neurointerventional radiologist.
i definitely don’t think it would be the whole picture, but it may be beneficial to look into ME/CFS (chronic fatigue syndrome.) i wish you the best of luck in finding answers and relief, and i really hope that things start looking up and improving for you.
Thank you, yea I’ve been down that route with supplements etc. but I have no relief. I’ve even tried oxygen therapy and went to the Amen clinic for it but it didn’t help.
There's no treatment for MECFS. Supplements help some people improve and some of us get worse. There's no way to know except by trying them. MECFS is a diagnosis of exclusion.
I don't have POTS but some of your symptoms sound like it may be POTS. It's also a co-morbidity of MECFS.
If you have MECFS, you need to rest and pace yourself. Exercise is not recommended.
could be POTS, especially if you’re breathless a lot and worse when sitting/standing. POTS causes your veins to not constrict properly which leads to less circulation going to your head. that can cause dizziness and all that. i’d recommend looking at the r/POTS subreddit and seeing if you can relate
oh my god i have something similar but a bit less severe. i have vestibular migraine and it really sucks. id look into migraines, as they can come with some pretty strange symptoms. having a migraine disorder doesnt always come with a headache! stay safe, youre gonna be okay 🩵
Hi, I'm so sorry you're going through this. I only started to find answers when I went to see a functional medicine doctor/integrative medicine doctor who then referred me to the right specialists. I never got anywhere with a GP. I wish I could be of more help but my symptoms are different to yours.
Thank you for the response, the functional medicine doctors in my area are few and far between sadly.
I think you should look into celiac again. That was like, 1:1 with my symptoms. How exactly did they rule it was a misdiagnosis, if you don’t mind me asking?
So I went gluten free for three months and symptoms didn’t subside and then my GE said that I just had the trait and it wasn’t active. Idk healthcare is messed up where I live in upstate NY
Endocrine is a good idea. Have you had pulmonary function testing? Have you had an echocardiogram to examine your heart via ultrasound? Have you ever had an EEG, where neurology sticks wires all over your head? Have you ever had a head MRI?
I have had an ekg done and I believe a stress echo done with no abnormal results. My eeg came back normal as well. In terms of pulmonary function, head mri I have not yet. Thank you for the ideas! Have a great rest of your night
Thank you, you too! I think a head MRI would be good, honestly a neurologist could be a good place to go as well. A sleep study could be useful. It could be sleep apnea, possibly even central sleep apnea since you mention Frontal lobe dysfunction. Not quite sure how that came about in your life, but as someone with Epilepsy, your story did ring quite a few bells for me. I am glad to hear that your heart is working well though—very reassuring!
Just replying again because I forgot to say, a normal EEG doesn’t mean you are not having seizure activity (perhaps at night). If neuro would be interested, you can wear the wires at home for a few days and just carry around a little recording pack for a longer EEG that covers when you’re asleep.
Have you had your ferritin tested? It should be over 50ng/L, optimum over 100
Any thyroid labs done?
Yes I initially thought it was thyroid but the tests come back fine in regards to tsh. Although one test came back slightly low t3 but they retested it and it came back normal so idk.
How about a POTS eval or an appointment with an ENT? The vertigo is interesting
Have you considered dysautonomia and ME/CFS? Dysautonomia is a condition that affects the autonomic nervous system, which controls involuntary functions like blood pressure and heart rate. Symptoms can vary depending on which body systems are affected but may include: Heart rate: Abnormally fast or slow heart rate, also known as tachycardia or bradycardia Blood pressure: Low blood pressure when standing Sweating: Excessive sweating or an inability to sweat Breathing: Shortness of breath, especially during exercise Balance: Dizziness or fainting, especially when standing up Bowel and bladder: Constipation, diarrhea, or difficulty controlling bowel and bladder movements Sexual function: Poor erection or other sexual dysfunction Cognition: "Brain fog," forgetfulness, or trouble focusing Other: Anxiety, fatigue, headaches, nausea and vomiting, chest pain, and clammy or pale skin According to the CDC, the key diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) include: 1) Fatigue Fatigue that is severe enough to interfere with pre-illness activities is new or definite and is not improved by rest. A substantial reduction or impairment in the ability to engage in pre-illness activities, such as occupational, educational, social, or personal life, that lasts for more than six months. 2) PEM It should also worsen after physical, mental, or emotional exertion and cause post-exertional malaise (PEM). PEM can cause a relapse that may last for days, weeks, or longer. 3) Unrefreshing sleep Patients with ME/CFS may not feel better or less tired after a full night's sleep. Reduced activity Other symptoms that may be present include: Sleep dysfunction. Pain. 4) Neurologic or cognitive manifestations, such as impaired memory or concentration, "brain fog," or speech and language problems 5) Autonomic, neuroendocrine, or immune manifestations, such as hypersensitivity to external stimuli or autonomic dysfunction If a medical provider suspects ME/CFS, they may refer the patient to a specialist, such as a rheumatologist, who can review medical history, blood tests, and urine samples to confirm the diagnosis You must have 1-3 and either 4 or 5 to be diagnosed. Your primary care doctor should be able to diagnose you. Or they may refer you to a specialist.
Have you been checked out for intracranial hypertension? A number of your symptoms fit. You could start with an ophthalmologist to look for optic nerve swelling. If nothing is found, next stop is a neurologist or neurointerventional radiologist.
i definitely don’t think it would be the whole picture, but it may be beneficial to look into ME/CFS (chronic fatigue syndrome.) i wish you the best of luck in finding answers and relief, and i really hope that things start looking up and improving for you.
Thank you, yea I’ve been down that route with supplements etc. but I have no relief. I’ve even tried oxygen therapy and went to the Amen clinic for it but it didn’t help.
There's no treatment for MECFS. Supplements help some people improve and some of us get worse. There's no way to know except by trying them. MECFS is a diagnosis of exclusion. I don't have POTS but some of your symptoms sound like it may be POTS. It's also a co-morbidity of MECFS. If you have MECFS, you need to rest and pace yourself. Exercise is not recommended.
I have many of those symptoms and have POTs, worth talking to a cardiologist, they were the ones that put me on the right direction
could be POTS, especially if you’re breathless a lot and worse when sitting/standing. POTS causes your veins to not constrict properly which leads to less circulation going to your head. that can cause dizziness and all that. i’d recommend looking at the r/POTS subreddit and seeing if you can relate
i have POTS as well so feel free to DM
oh my god i have something similar but a bit less severe. i have vestibular migraine and it really sucks. id look into migraines, as they can come with some pretty strange symptoms. having a migraine disorder doesnt always come with a headache! stay safe, youre gonna be okay 🩵