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Old 01-25-2018, 02:28 PM #1
Magpie76 Magpie76 is offline
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Question Help in describing dizziness to drs

Hello everyone - I'm Maggie and brand new.

I have been recovering from a TBI since Nov 15, and have my first appt with the neurologist on Feb 8th. My symptoms seem fairly typical (dizziness, headaches, light/sound sensitivity, word finding, etc.). For me however, the worst is the dizziness.

I would be so grateful for your help in reading this and telling me if I'm explaining myself well. This Feb 8th appt is so so important to me -- I'm a single mom of 3 kids and an executive. I'm the only one supporting our family, so I want to heal and get back to my life as quickly as possible.

Here's what I experience as dizziness:

- If you take your finger and gently push it against the bridge of your nose, that sensation is similar to what I feel. Just 100X stronger. Like if you fly to 30,000 feet, in those couple of seconds where your head and ears adjust. That feeling, but it's constant.
- The pressure feels like it starts there at the bridge of my nose, and spreads through my forehead. This pressure sensation seems to be what creates the dizziness.
- When the pressure gets more intense I call it pain, and these are what I'd consider headaches. When that happens, the dizziness turns into nausea.
- The headache pain is like a 6 or 7. For me a 10 is natural childbirth, a 9 is passing a kidney stone or when one of my discs first go out. So, not that strong. But the headaches last 3-4 days and almost nothing relieves it. I'm completely useless for that time period.
- Then eventually the pain recedes again and returns to "pressure" level, which is where it is now. Just insanely dizzy. The headaches I could live with since they're not constant, but the dizziness is debilitating. I've gone from working 60 hr weeks, to barely being able to be on a computer or cook my kids dinner. It will start getting better and then it's back again. Some triggers I've figured out.

The dizziness gets worse by various things:

visual - scrolling on a computer, or turning the page of a book. bright lights or the grocery store is often too much
sound - anything loud like a blender or shouting, and especially high-pitch noises like plastic bags being rustled
movement - bending over for too long, or driving in a car (especially vehicles that take speed bumps and turns like boats- omg)
cognitive - thinking too hard, like solving algebra equations or remembering a word that won't come
emotional/physical fatigue - getting upset, or trying to do any activity like running errands or cleaning for more than an hour

Thoughts, questions, any recommendations?? Please be as direct as you want. I want to give the dr the info she needs to help me.

Fwiw, I mentioned my discs in the pain scale above; I already had 3 herniated cervical discs which have not gone out since the injury, but are there in case that's relevant.

Thank you so much!

Maggie
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Old 01-25-2018, 05:06 PM #2
Mark in Idaho Mark in Idaho is offline
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Magpie76,

Welcome to NeuroTalk. Sorry to hear you are struggling so.

You don't describe your concussion impact or say what diagnostics you have had so trying to find a way to explain your symptoms is difficult. I can take a few wild shots.

There are concussions where the bones in the sinus have fractured. This can even happen when the face or front of the head was not the impact zone. A CT Scan or MRI may image this. Have you been checked out by an ENT?

There are some conditions where the injury to the sinus causes pressure to build because the sinus gets inflamed and plugged. Again, an ENT may be worthwhile. Do anti-inflammatory meds make a difference?

This same area can be an impact area for the brain, either directly or contra coup (bounce back inside the skull).

Have you ever tried checking your blood pressure when this is happening? Elevated BP can be part of these symptoms.

It you are seeing a generic neuro, many of us would not be surprised that you leave the neuro baffled. A headache specialist may be better.

There are also some vision system issues that can cause problems. Behavioral optometrists may have an assessment system that can help.

Regarding relating your symptoms to the neuro, I think your description is about as good as it gets.

Please feel free to tell us more about your injury and treatments. We have heard everything.

My best to you.
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Old 01-25-2018, 06:08 PM #3
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Hi Mark!

Thanks so much for answering. Didn't want to over-share initially. Here are answers to the questions you asked:

Concussion: Hit my head twice in 48 hrs; unsure if both were concussions, however the second definitely was. We're renovating our house and both blows were caused by hitting a wooden support beam just put in. The first incident on Mon, I walked full-speed into it not even realizing it was there. Hit across my forehead. It was enough to ice and stop for the day but no other symptoms. Then 2 days later on Wed I dropped a tool and as I came up with all my force, rammed into the same beam; where my hairline meets my forehead. That one I knew was different instantly. Was nauseous, disoriented and said some strange things (kept saying the opposite word I meant without realizing it). But felt better by that night and assumed that was the end of it.

Diagnostics: I pushed through until Fri, when I finally had to leave work for urgent care because I was so sick. Until then I was thinking maybe I was getting sick or a migraine. They first diagnosed concussion, and connected the fact that there might have been two in a short period. Symptoms kept increasing over next couple days, so went to ER. They did a CT scan and showed no “acute findings” (CT Head without contrast). Since then I’ve seen my primary care dr every 2 weeks; no ENT or other specialist. I live in a fairly small town, so when I hit the 2 month mark and was referred to neurologist, I asked for anyone in the SF Bay Area who specializes in PCS. That’s who I’m seeing on Feb 8.

Sinuses: Unfortunately cannot take anti-inflammatories. Have an ulcer caused by anti-inflammatories from when my discs first started going out and was still competing. But I’ve been doing daily saline rinses and using a vaporizer at night since Nov, just in case it *could* be more directly sinus related.

Blood pressure: I’m not sure how to check my BP, but will google it. I tend to have low BP (usually 95/70 or something like that). Unsure if that’s relevant.

Please let me know if you have any other questions or suggestions. I’ve learned so much reading everyone’s posts the past few weeks, and am so grateful to be able to talk to someone about this!

Maggie



Quote:
Originally Posted by Mark in Idaho View Post
Magpie76,

Welcome to NeuroTalk. Sorry to hear you are struggling so.

You don't describe your concussion impact or say what diagnostics you have had so trying to find a way to explain your symptoms is difficult. I can take a few wild shots.

There are concussions where the bones in the sinus have fractured. This can even happen when the face or front of the head was not the impact zone. A CT Scan or MRI may image this. Have you been checked out by an ENT?

There are some conditions where the injury to the sinus causes pressure to build because the sinus gets inflamed and plugged. Again, an ENT may be worthwhile. Do anti-inflammatory meds make a difference?

This same area can be an impact area for the brain, either directly or contra coup (bounce back inside the skull).

Have you ever tried checking your blood pressure when this is happening? Elevated BP can be part of these symptoms.

It you are seeing a generic neuro, many of us would not be surprised that you leave the neuro baffled. A headache specialist may be better.

There are also some vision system issues that can cause problems. Behavioral optometrists may have an assessment system that can help.

Regarding relating your symptoms to the neuro, I think your description is about as good as it gets.

Please feel free to tell us more about your injury and treatments. We have heard everything.

My best to you.
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Old 01-26-2018, 12:44 AM #4
Mark in Idaho Mark in Idaho is offline
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The simple way to check your BP is with a home BP kit that wraps around your wrist. They are $30 or so at Walgreens or such.

The head CT was probably looking for brain contusions or bleeds. They may be able to give it a second look and check the bones around the sinuses.

I think an ENT assessment would be worthwhile. I hope the concussion specialist understands the unusual presentations.

My best to you.
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Old 01-26-2018, 09:24 PM #5
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The way you hit your head both times , could have easily misaligned the C1/C2 ( atlas /axis) , upper cervical..
MDs don't really look for that at all issue unless it is glaringly obvious on standard imaging.., upper cervical care /chiropractic might be worth checking into..
Plus the old stigma bias against chiropractic care..
Up C Spine - more info

Possibly could be some trigger points in and around the neck & upper back muscles referring symptoms of headache & dizziness..
Evaluation by an advanced PT with knowledge of PCS & TrPs might be beneficial..
Some knowledgeable chiropractors may be skilled in that too.
I posted links for trigger points in a recent thread here, or click my username and see past posts to find it.. or just web search it..lots of info and some self care /how to do some of it yourself..
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Old 02-02-2018, 12:17 AM #6
Magpie76 Magpie76 is offline
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Quote:
Originally Posted by Jo*mar View Post
The way you hit your head both times , could have easily misaligned the C1/C2 ( atlas /axis) , upper cervical..
MDs don't really look for that at all issue unless it is glaringly obvious on standard imaging.., upper cervical care /chiropractic might be worth checking into..
Plus the old stigma bias against chiropractic care.. C Spine - more info

Possibly could be some trigger points in and around the neck & upper back muscles referring symptoms of headache & dizziness..
Evaluation by an advanced PT with knowledge of PCS & TrPs might be beneficial..
Some knowledgeable chiropractors may be skilled in that too.
I posted links for trigger points in a recent thread here, or click my username and see past posts to find it.. or just web search it..lots of info and some self care /how to do some of it yourself..
Thank you so much! And apologies for the delay. Had a bad couple days.

But it's interesting you mentioned the upper cervical possibility. The 3 herniated are a bit lower, but I imagine the muscles are weak and I probably protect the area out of habit at this point. Will for sure look through the links you shared - thanks again so much.
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Old 02-02-2018, 09:57 PM #7
TomAce994 TomAce994 is offline
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Quote:
Originally Posted by Magpie76 View Post
Hi Mark!

Thanks so much for answering. Didn't want to over-share initially. Here are answers to the questions you asked:

Concussion: Hit my head twice in 48 hrs; unsure if both were concussions, however the second definitely was. We're renovating our house and both blows were caused by hitting a wooden support beam just put in. The first incident on Mon, I walked full-speed into it not even realizing it was there. Hit across my forehead. It was enough to ice and stop for the day but no other symptoms. Then 2 days later on Wed I dropped a tool and as I came up with all my force, rammed into the same beam; where my hairline meets my forehead. That one I knew was different instantly. Was nauseous, disoriented and said some strange things (kept saying the opposite word I meant without realizing it). But felt better by that night and assumed that was the end of it.

Diagnostics: I pushed through until Fri, when I finally had to leave work for urgent care because I was so sick. Until then I was thinking maybe I was getting sick or a migraine. They first diagnosed concussion, and connected the fact that there might have been two in a short period. Symptoms kept increasing over next couple days, so went to ER. They did a CT scan and showed no “acute findings” (CT Head without contrast). Since then I’ve seen my primary care dr every 2 weeks; no ENT or other specialist. I live in a fairly small town, so when I hit the 2 month mark and was referred to neurologist, I asked for anyone in the SF Bay Area who specializes in PCS. That’s who I’m seeing on Feb 8.

Sinuses: Unfortunately cannot take anti-inflammatories. Have an ulcer caused by anti-inflammatories from when my discs first started going out and was still competing. But I’ve been doing daily saline rinses and using a vaporizer at night since Nov, just in case it *could* be more directly sinus related.

Blood pressure: I’m not sure how to check my BP, but will google it. I tend to have low BP (usually 95/70 or something like that). Unsure if that’s relevant.

Please let me know if you have any other questions or suggestions. I’ve learned so much reading everyone’s posts the past few weeks, and am so grateful to be able to talk to someone about this!

Maggie
Maggie,

I'm sorry to hear what you have been going through. I experienced a head injury and still have residual dizziness, with similar triggers that you described. I obviously am not a doctor, so please recognize the following is not medical advice. However, it was a long road for me to find doctors who could set me up for sound treatment. Surprisingly, a lot of neurologists aren't very knowledgable about mild brain injuries. During my time, I've learned quite a bit on how to talk to doctors, and in regards to what treatment options are available.

First off, for your doctor's appointment, make sure you write down your current symptoms and any questions you may have (on paper, doctors aren't a fan of someone looking at their phone). When the doctor asks you to explain your symptoms, speak clearly and concisely. Studies show the doctor will give you about 20 seconds until he/she starts to jump to conclusions.

Dizziness can be caused by a lot of different issues: neck (cervicogenic), inner ear/vestibular nerve damage, or a mild brain injury are some of the big causes. A brain injury can affect the integration of your vision, vestibular system, as well as somatosensory system. When there is a problem with the integration of all that causes dizziness.

Here are a couple links that are worth a read for you. I know some people have posted them as well.

It turns out I can't post links yet, so Google:

"PPPD"
"Post concussion syndrome recovery blog"


If I were you I would:

Ask for an MRI
Test to rule out cervicogenic dizziness
Ask if you should see an ENT
Ask if you need a VNG (tests the functioning of your vestibular system to determine if it's your inner ear or brain causing the problems)
Ask if you would benefit from a collective effort of Occupational Therapy/Physical Therapy/Speech Therapy. These therapists could help recovery in visual, vestibular, and cognitive deficiencies.

I'd also think about taking fish oil supplements with high DHA, magnesium supplements (with food), and vitamin B complex. Also ensure you are getting a good night's sleep, 6 hours at the minimum.

Good luck with your appointment. I'll check back here for updates.
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Old 02-06-2018, 03:01 PM #8
Magpie76 Magpie76 is offline
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Quote:
Originally Posted by TomAce994 View Post
Maggie,

I'm sorry to hear what you have been going through. I experienced a head injury and still have residual dizziness, with similar triggers that you described. I obviously am not a doctor, so please recognize the following is not medical advice. However, it was a long road for me to find doctors who could set me up for sound treatment. Surprisingly, a lot of neurologists aren't very knowledgable about mild brain injuries. During my time, I've learned quite a bit on how to talk to doctors, and in regards to what treatment options are available.

First off, for your doctor's appointment, make sure you write down your current symptoms and any questions you may have (on paper, doctors aren't a fan of someone looking at their phone). When the doctor asks you to explain your symptoms, speak clearly and concisely. Studies show the doctor will give you about 20 seconds until he/she starts to jump to conclusions.

Dizziness can be caused by a lot of different issues: neck (cervicogenic), inner ear/vestibular nerve damage, or a mild brain injury are some of the big causes. A brain injury can affect the integration of your vision, vestibular system, as well as somatosensory system. When there is a problem with the integration of all that causes dizziness.

Here are a couple links that are worth a read for you. I know some people have posted them as well.

It turns out I can't post links yet, so Google:

"PPPD"
"Post concussion syndrome recovery blog"


If I were you I would:

Ask for an MRI
Test to rule out cervicogenic dizziness
Ask if you should see an ENT
Ask if you need a VNG (tests the functioning of your vestibular system to determine if it's your inner ear or brain causing the problems)
Ask if you would benefit from a collective effort of Occupational Therapy/Physical Therapy/Speech Therapy. These therapists could help recovery in visual, vestibular, and cognitive deficiencies.

I'd also think about taking fish oil supplements with high DHA, magnesium supplements (with food), and vitamin B complex. Also ensure you are getting a good night's sleep, 6 hours at the minimum.

Good luck with your appointment. I'll check back here for updates.
Thanks so much for all this info. Wanted to share an update since you all were so kind to respond and offer advice.

Saw a neurologist today for the first time. He looked at my CTscan imagining and there is a shaded area on the right side. Per the radiologist, probably just a shadow of bone --but if so they were surprised it wasn't symmetrical since the bone is the skull is the same shape on each side. Anyway, was will be having an MRI sometime this week. I'm assuming it's just a shadow and there will be no magic answer from this, but still it's nice to have a next step.
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Old 02-08-2018, 09:42 PM #9
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Quote:
Originally Posted by Magpie76 View Post
Thanks so much for all this info. Wanted to share an update since you all were so kind to respond and offer advice.

Saw a neurologist today for the first time. He looked at my CTscan imagining and there is a shaded area on the right side. Per the radiologist, probably just a shadow of bone --but if so they were surprised it wasn't symmetrical since the bone is the skull is the same shape on each side. Anyway, was will be having an MRI sometime this week. I'm assuming it's just a shadow and there will be no magic answer from this, but still it's nice to have a next step.
I'm glad you are getting an MRI. Just remember, because you have a "normal" MRI doesn't mean you shouldn't have symptoms or don't need therapy. MRIs aren't as useful for a mTBI as one might think.

Good luck!
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Old 03-02-2018, 01:39 PM #10
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Hello everyone! Thanks again for your advice. Wanted to share an update and ask a question.

Update - MRI came back normal. But the VNG test shows eye movement on the right side. Would love to hear from anyone who experienced vertigo from the little ear crystals post-concussion.

Question - Was referred to Stanford prior to the VNG test and just got a call from them to schedule. Would you go down both routes simultaneously? Stanford is about 1- 1.5 hrs away from me, depending on time of day. So it's a big commitment.

Maggie
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