Undiagnosed Head Symptoms (Still Help!)

Posted by tess0831 @tess0831, Apr 22, 2020

A few times over the last couple years, I’ve had this strange head feeling that comes on suddenly, sticks around for 2-3 weeks, then goes away (most recently, it came back today). It’s extremely hard to explain, but it’s like I’ll suddenly start to feel like I’m not fully “in my head”– I’d almost want to call it brain fog, but my cognitive function is still completely there. It’s almost a mild “head high” feeling, and while I don’t feel any pain or pressure, it’s extremely distracting/annoying and makes me feel like I don’t have mental clarity. The first time it happened I actually was so worried at one point that I went to the ER. They did a blood test and EKG, nothing abnormal, and basically sent me home and told me to try allergy meds. It coincided with tooth pain/me finding out I needed my wisdom teeth removed, and then it kind of went away on its own, so I didn’t think too much of it. The second time was several months ago, where it came on suddenly one evening as the sun was going down (at first I thought I was just reacting weird to the change in light, but it stuck around for a couple weeks after that). That time I was having some neck pain from a recent fall and had seen a chiropractor, so they thought it could have to do with the neck pain….but again, it seemed to just go away on its own after a couple weeks. This morning I felt completely fine, but I was working outside (I work with horses) and it started to get really hot which made me hot/tired, and I sat down because that feeling started to come back.
When it happens, I tend to have sensitivity to light, and very vivid dreams/I’ll tend to sleep deeper and be more tired.
Given that it’s happened 3 times now under different circumstances, I’m having a difficult time figuring out what it could be, and it’s not exactly the best time to go to a hospital and have tests run. I plan on having a call with my doctor, but I would love any suggestions in the meantime for things I could try or get over-the-counter that could possibly help (or just any ideas of what it could be).
Thank you in advance!

Hi everyone, thank you for the input. As of right now, my primary care doctor thinks it could be allergy related, but I have an appointment with a neurologist this afternoon. I've been taking over-the-counter allergy meds (have tried allegra and claritin) as well as a daily saline nasal rinse, per my doctor, and while my allergy symptoms haven't been an issue, the head feeling is still there and comes in waves, better at some times, bad at others, but always there. A few things I will say: One, my dad has sinus issues and a long time ago was diagnosed with chronic sinustitis and had to have surgery for it. Two, my mom and sister both get bad seasonal allergies, and I didn't until a couple years ago. For now my doctor wants me to see a neurologist but if that's ruled out I'm sure I'll end up with an ear nose and throat doctor. This is almost debilitating, and it's so frustrating not having something that can help. My doctors so far have really wanted to pin it on anxiety, but I'm 100% certain my anxiety is DERIVING from this head feeling and not knowing what it is/being uncomfortable all the time.

I've written down all of my symptoms and came up with this list so far: A "filled up" or "high" feeling (NOT dizzy or a headache); feeling like I'm not really "in my head" but cognitively still functioning normally; more tired than usual; having vivid, bad dreams and a heavy headed feeling overnight; sensitivity to light; mild pressure in sides of head or ears sometimes; a few times, have had ear ringing for a few seconds; lasts anywhere from a few days to a couple weeks at a time; have gotten an actual headache a few times, but it's not often; sometimes I feel like a dizziness is coming on, but it never gets to that point. I'll post an update after I see the neurologist today.

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@tess0831

Hi everyone, thank you for the input. As of right now, my primary care doctor thinks it could be allergy related, but I have an appointment with a neurologist this afternoon. I've been taking over-the-counter allergy meds (have tried allegra and claritin) as well as a daily saline nasal rinse, per my doctor, and while my allergy symptoms haven't been an issue, the head feeling is still there and comes in waves, better at some times, bad at others, but always there. A few things I will say: One, my dad has sinus issues and a long time ago was diagnosed with chronic sinustitis and had to have surgery for it. Two, my mom and sister both get bad seasonal allergies, and I didn't until a couple years ago. For now my doctor wants me to see a neurologist but if that's ruled out I'm sure I'll end up with an ear nose and throat doctor. This is almost debilitating, and it's so frustrating not having something that can help. My doctors so far have really wanted to pin it on anxiety, but I'm 100% certain my anxiety is DERIVING from this head feeling and not knowing what it is/being uncomfortable all the time.

I've written down all of my symptoms and came up with this list so far: A "filled up" or "high" feeling (NOT dizzy or a headache); feeling like I'm not really "in my head" but cognitively still functioning normally; more tired than usual; having vivid, bad dreams and a heavy headed feeling overnight; sensitivity to light; mild pressure in sides of head or ears sometimes; a few times, have had ear ringing for a few seconds; lasts anywhere from a few days to a couple weeks at a time; have gotten an actual headache a few times, but it's not often; sometimes I feel like a dizziness is coming on, but it never gets to that point. I'll post an update after I see the neurologist today.

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On a side note– I did have blood tests and an EKG done last week which all came back normal.

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@tess0831

Hi everyone, thank you for the input. As of right now, my primary care doctor thinks it could be allergy related, but I have an appointment with a neurologist this afternoon. I've been taking over-the-counter allergy meds (have tried allegra and claritin) as well as a daily saline nasal rinse, per my doctor, and while my allergy symptoms haven't been an issue, the head feeling is still there and comes in waves, better at some times, bad at others, but always there. A few things I will say: One, my dad has sinus issues and a long time ago was diagnosed with chronic sinustitis and had to have surgery for it. Two, my mom and sister both get bad seasonal allergies, and I didn't until a couple years ago. For now my doctor wants me to see a neurologist but if that's ruled out I'm sure I'll end up with an ear nose and throat doctor. This is almost debilitating, and it's so frustrating not having something that can help. My doctors so far have really wanted to pin it on anxiety, but I'm 100% certain my anxiety is DERIVING from this head feeling and not knowing what it is/being uncomfortable all the time.

I've written down all of my symptoms and came up with this list so far: A "filled up" or "high" feeling (NOT dizzy or a headache); feeling like I'm not really "in my head" but cognitively still functioning normally; more tired than usual; having vivid, bad dreams and a heavy headed feeling overnight; sensitivity to light; mild pressure in sides of head or ears sometimes; a few times, have had ear ringing for a few seconds; lasts anywhere from a few days to a couple weeks at a time; have gotten an actual headache a few times, but it's not often; sometimes I feel like a dizziness is coming on, but it never gets to that point. I'll post an update after I see the neurologist today.

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ear rigging is tinnitis. I have simiiiar symptoms with C 5-6 compression problem. I regained my motion but head, neck and arms are numb. My Pace maker came in noemal for 10 more years battery. My MRI of the brain does not not show any thing. My Vit. D level came back to normal. I am having parathyroid tests soon. But, if not reclining, I feel like I am looking out of a helmit. Keep in touch

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Let me start from the beginning– about 2 years ago, I was driving to work and suddenly felt this strange head feeling (a "fullness" in my head, almost a high feeling, feeling detached, some pressure in the sides or back of my head, etc.) and it made me sensitive to light and have difficulty concentrating. Extreme anxiety also ensued because of this (the feeling itself, plus not knowing what it is and having to call out from my job), and I actually had to turn around, go home, and take the day off of work. At the time it coincided with tooth pain, so I went to a dentist and found out my wisdom teeth had to be removed– they told me my impacted wisdom teeth could possibly be pushing against my sinuses causing the strange head symptoms.
I had my wisdom teeth removed, but the dentist told me after surgery that he had to leave a small rice-sized piece of one of my wisdom teeth in there because it was too close to my sinuses.
About a month or less after the surgery, the strange head feeling returned, and lasted almost 2 weeks before going away; during that time, I actually went to the ER one day because of how bad it was– they did a basic blood test and EKG, said it was normal and I might have allergies, and sent me home. OTC allergy medication did not help the symptoms. After a few days, the feeling went away on its own.
Over the last couple years, it's come on a small handful of times during different times of year, lasted anywhere from a few days to two weeks, and then disappeared.
A month ago however, it came on strongly one day, and has not gone away since– this is the longest it's lasted, by far. It's completely debilitating, and I'm at my wit's end here. My primary care doctor suggested allergies, or anxiety. I had an over the phone appointment with an ENT Dr. who also though allergies, and has had me taking Flonase and Claritin daily for 2 weeks now (which has not improved my symptoms). I saw a neurologist and passed his basic neurological exam "with flying colors", and had a normal head CT. I've had various blood tests which have come back normal except for a couple– my Cortisol was high, but was also taken outside of their typical reference time (so they're having me do a 24hr urine test to test my cortisol levels). I also tested positive "across the board" on the allergy blood panel I did (for pollen, dust, etc.) but can't see an allergist for another week, and while the allergy medication is helping my actual allergy symptoms, it's not helping the mysterious head feeling. I do live on a horse ranch in an old house, and have always wondered about allergens and even mold– but again, the allergy meds are not helping the strange head symptoms.
At this point I have several theories in my mind– an inner ear or sinus issue (I do get almost-dizziness sometimes, pressure in the sides of my head above my ears, etc. and my dad and grandmother had sinus issues), some sort of allergy thing, mold exposure as a possibility, anxiety (although I really believe the anxiety is triggered by the head symptoms rather than the other way around), or something having to do with that wisdom tooth surgery.
Any and all suggestions would be so much appreciated! I'm finally seeing an ENT tomorrow in person, and then an allergist on Monday.

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@tess0831

Let me start from the beginning– about 2 years ago, I was driving to work and suddenly felt this strange head feeling (a "fullness" in my head, almost a high feeling, feeling detached, some pressure in the sides or back of my head, etc.) and it made me sensitive to light and have difficulty concentrating. Extreme anxiety also ensued because of this (the feeling itself, plus not knowing what it is and having to call out from my job), and I actually had to turn around, go home, and take the day off of work. At the time it coincided with tooth pain, so I went to a dentist and found out my wisdom teeth had to be removed– they told me my impacted wisdom teeth could possibly be pushing against my sinuses causing the strange head symptoms.
I had my wisdom teeth removed, but the dentist told me after surgery that he had to leave a small rice-sized piece of one of my wisdom teeth in there because it was too close to my sinuses.
About a month or less after the surgery, the strange head feeling returned, and lasted almost 2 weeks before going away; during that time, I actually went to the ER one day because of how bad it was– they did a basic blood test and EKG, said it was normal and I might have allergies, and sent me home. OTC allergy medication did not help the symptoms. After a few days, the feeling went away on its own.
Over the last couple years, it's come on a small handful of times during different times of year, lasted anywhere from a few days to two weeks, and then disappeared.
A month ago however, it came on strongly one day, and has not gone away since– this is the longest it's lasted, by far. It's completely debilitating, and I'm at my wit's end here. My primary care doctor suggested allergies, or anxiety. I had an over the phone appointment with an ENT Dr. who also though allergies, and has had me taking Flonase and Claritin daily for 2 weeks now (which has not improved my symptoms). I saw a neurologist and passed his basic neurological exam "with flying colors", and had a normal head CT. I've had various blood tests which have come back normal except for a couple– my Cortisol was high, but was also taken outside of their typical reference time (so they're having me do a 24hr urine test to test my cortisol levels). I also tested positive "across the board" on the allergy blood panel I did (for pollen, dust, etc.) but can't see an allergist for another week, and while the allergy medication is helping my actual allergy symptoms, it's not helping the mysterious head feeling. I do live on a horse ranch in an old house, and have always wondered about allergens and even mold– but again, the allergy meds are not helping the strange head symptoms.
At this point I have several theories in my mind– an inner ear or sinus issue (I do get almost-dizziness sometimes, pressure in the sides of my head above my ears, etc. and my dad and grandmother had sinus issues), some sort of allergy thing, mold exposure as a possibility, anxiety (although I really believe the anxiety is triggered by the head symptoms rather than the other way around), or something having to do with that wisdom tooth surgery.
Any and all suggestions would be so much appreciated! I'm finally seeing an ENT tomorrow in person, and then an allergist on Monday.

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Hi @tess0831, I appreciate your retelling your story from the beginning. I've moved this full message to join the earlier discussion you started to keep the history of your journey in one place. While you haven't got a clear diagnosis yet, it does seem like some progress is being made either by ruling things out and trying new avenues of investigation. While it's frustrating to not have a diagnosis, you must be relieved that you passed the basic neurological exam and that the head CT came back normal.

It sounds like you have doctors who are working with you to get to the bottom of the issue. All the best with your appointment with ENT tomorrow. As you prepare for your appointment, you may be interested in reading these discussions:
– Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/
– Middle ear congestion https://connect.mayoclinic.org/discussion/middle-ear-congestion/

And others in the ENT group https://connect.mayoclinic.org/group/ear-nose-throat-conditions/

In a previous post, you said that dizziness wasn't an issue. Is this a new symptom?

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@colleenyoung

Hi @tess0831, I appreciate your retelling your story from the beginning. I've moved this full message to join the earlier discussion you started to keep the history of your journey in one place. While you haven't got a clear diagnosis yet, it does seem like some progress is being made either by ruling things out and trying new avenues of investigation. While it's frustrating to not have a diagnosis, you must be relieved that you passed the basic neurological exam and that the head CT came back normal.

It sounds like you have doctors who are working with you to get to the bottom of the issue. All the best with your appointment with ENT tomorrow. As you prepare for your appointment, you may be interested in reading these discussions:
– Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/
– Middle ear congestion https://connect.mayoclinic.org/discussion/middle-ear-congestion/

And others in the ENT group https://connect.mayoclinic.org/group/ear-nose-throat-conditions/

In a previous post, you said that dizziness wasn't an issue. Is this a new symptom?

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Thank you– and yes, dizziness is a new symptom over the last couple weeks. It's more of an almost-dizzy feeling, where I feel like I'm getting dizzy and then it stops. I've also had, on rare occassion recently, objects shifting when I look at them or looking like they're "breathing", which I've read can be a symptom of inner ear/vestibular issues.

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@tess0831

Thank you– and yes, dizziness is a new symptom over the last couple weeks. It's more of an almost-dizzy feeling, where I feel like I'm getting dizzy and then it stops. I've also had, on rare occassion recently, objects shifting when I look at them or looking like they're "breathing", which I've read can be a symptom of inner ear/vestibular issues.

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@tess0831 When I read your post what I think about is a physical problem that may be due to spine alignment. Some of this can be aggravated by poor posture, with issues like thoracic outlet syndrome (which I have) and that can affect blood flow to the brain. TOS can stop blood flow by turning your head. I am also a spine surgery patient, and have had a fair share of neck muscle spasms that have pulled on my cervical vertebrae. If C1 or C2 are twisted, turned or tilted, it can set off very bad dizziness or vertigo until they are realigned properly and that also affects blood flow to he brain if it is off. I have been fine ever since spine surgery. You may want to find a good physical therapist who is familiar with TOS and who rehabs spine surgery patients for an evaluation. Here are some technical links that can explain some possible issues.
https://mskneurology.com/atlas-joint-instability-causes-consequences-solutions/
https://mskneurology.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/

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@tess0831

Thank you– and yes, dizziness is a new symptom over the last couple weeks. It's more of an almost-dizzy feeling, where I feel like I'm getting dizzy and then it stops. I've also had, on rare occassion recently, objects shifting when I look at them or looking like they're "breathing", which I've read can be a symptom of inner ear/vestibular issues.

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@tess0831 With your dizziness and seeing objects shifting don't rule out and eye problems . I would make an appt to see your ophthalmologist after your ENT appt if you don't get any satisfaction . Good luck Let us know your outcome.

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Update after seeing the ENT– she's very convinced it's allergy related, as I tested positive for all the allergies on my blood panel. The highest/most concerning one is for mold– normal range is equal to or lesser than 0.36 kUa/L, and while some of my allergy levels were above range for some (1.5, 2.6 etc.) the one for mold is 49.8 kUa/L which is extremely high. I live in an old house on a ranch, and would not at all be surprised if there's mold here (in fact, have always wondered about it as we have roof leaks, weird/bad smells in the summer, etc.). While structurally my sinuses and innner ear look ok, she thinks the allergy is causing inflammation in my inner ear which could cause my symptoms. So today I was prescribed a new nasal spray to use in addition to Flonase, which is called Azelastine (it's a topical antihistamine in nasal spray form, whereas Flonase is steroidal). My boyfriend and I also ordered a basic mold test kit…and of course this put together with my other positive allergy tests makes me want to move to a new place more and more!

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@tess0831

Update after seeing the ENT– she's very convinced it's allergy related, as I tested positive for all the allergies on my blood panel. The highest/most concerning one is for mold– normal range is equal to or lesser than 0.36 kUa/L, and while some of my allergy levels were above range for some (1.5, 2.6 etc.) the one for mold is 49.8 kUa/L which is extremely high. I live in an old house on a ranch, and would not at all be surprised if there's mold here (in fact, have always wondered about it as we have roof leaks, weird/bad smells in the summer, etc.). While structurally my sinuses and innner ear look ok, she thinks the allergy is causing inflammation in my inner ear which could cause my symptoms. So today I was prescribed a new nasal spray to use in addition to Flonase, which is called Azelastine (it's a topical antihistamine in nasal spray form, whereas Flonase is steroidal). My boyfriend and I also ordered a basic mold test kit…and of course this put together with my other positive allergy tests makes me want to move to a new place more and more!

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Sounds like you should move to a new place….

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Moving can be hard in a number of ways, but it sounds like a healthier home would be a very good step for you, take care, PS. we are trying to make our home healthier, its expensive and hard work, but were getting there and it does make a difference.,

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