1. < Brain & Nervous System

Chronic Headaches and Dizziness

Posted by churchaustin2 @churchaustin2, Nov 5, 2021

Hi,

I am from Canada and I am looking to potentially get treatment for my wife at the Rochester location.

She has had chronic headaches and dizziness for over 2 months now. The headaches are there everyday and ranges in severity from around 2/10 to 6/10 in terms of pain. The dizziness comes and goes. She was prescribed triptans which don't seem to work and neither do over the counter pain medications. She also has a stiff/sore neck but the doctors have ruled out meningitis. We initially thought it was a tension headache but it has not gone away.

She has been referred to a neurologist and an MRI for her brain but there is a long back log and don't even have a date set yet. So now we are exploring other options. I'm not even sure where to start with booking at the MAYO Clinic. There are a lot of options for booking appointments. So, firstly I am hoping someone can give me direction on what kind of appointment I could book for her?

Thank you

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 31, 2022
In reply to @missybelle "Just trying to be helpful here but I had all day dizziness for a year and..." + (show)
@missybelle

Just trying to be helpful here but I had all day dizziness for a year and my ear, nose and throat doc diagnosed me with PPPD. It may go by different names where you are from but research this and see if it fits your symptoms. It last for a long time but does get better with eye exercises. Good Luck. I wish you well.

Jump to this post

Hi @missybelle, Welcome to Connect. Thank you for sharing your diagnosis and what helped. I found some information on the condition for other members who may not know about it.

-- Persistent postural-perceptual dizziness (PPPD): a common, characteristic and treatable cause of chronic dizziness: https://pn.bmj.com/content/18/1/5.long

Do you mind sharing a little more about the eye exercises that helped with the PPPD?

REPLY
missybelle | @missybelle | Aug 31, 2022
In reply to @agis14 "Hello, has anyone had unexplained headaches and dizziness for a long time? It’s been 2 years..." + (show)
@agis14

Hello, has anyone had unexplained headaches and dizziness for a long time? It’s been 2 years and my mri’s and CT’s haven’t showed anything concerning. Yet everyday on the lower back part of my head (or back of head in general) I have a pulsating or pressure type pain with dizziness accompanying it. Sometimes it’s mild and occasionally it flares up. I’ve been referred to a neurologist but it’s been a long time with no exact cause or answer to this chronic problem. I figured it could be some pinched nerve problem or something since I do have stings and twitches, but can’t know for sure…

Jump to this post

Luckily my local physical therapy had one therapist who had special training in Vestibular Therapy. I had about 8 exercises to do daily that only took about 10 minutes. It’s hard to describe. The purpose was to induce dizziness but not to overdue it. It retrains the brain to cope and not panic. I would look at colored balls about 4 ft. apart on my fireplace mantel. I would sit 4 ft. away. While looking at the red ball you look out your peripheral vision at the green ball and quickly turn your head to the green ball. Then look periphery to the red ball and turn to that one. I would only do 10 of these. You can see why you need a coach. I got some emotional support from some web sites that demonstrate similar exercises. One is The Steady Coach.com and the other I liked is a uni student in England that greatly explains this condition. Her site is EMJAY styles on You Tube. After about 10 months I noticed the dizziness was waning and the blurry vision as well. I still have some residual blurry vision but I can look from left to right now without dizziness. I stopped driving it was so bad but hope to be able to soon. This confounding condition seems to have a link to people who suffer from anxiety. My ENT said the messages from my brain, eyes and inner ear were misfiring. My eyes felt like they were dragging and my balance was struggling. The ground swayed. It’s been a horrible experience and I hope I don’t have a relapse which can happen. It affects all ages. I count myself lucky after reading other peoples experiences.

REPLY
2 replies
agis14 | @agis14 | Aug 31, 2022
In reply to @missybelle "Just trying to be helpful here but I had all day dizziness for a year and..." + (show)
@missybelle

Just trying to be helpful here but I had all day dizziness for a year and my ear, nose and throat doc diagnosed me with PPPD. It may go by different names where you are from but research this and see if it fits your symptoms. It last for a long time but does get better with eye exercises. Good Luck. I wish you well.

Jump to this post

Dizziness is almost always present, so it’s similar to PPPD. The pressure makes it feel like I’m off balance rather than room spinning, but a year ago I did have sensations to a spinning room. I haven’t been referred to an ENT doctor since they think it’s neurological.

Aside from that, nerves in my wrists, forearm, and upper arm have begun to sting a bit more recently. Over these 2 years it’s mostly been guesses and pain management for general vertigo and headaches. What I have sounds progressive and I still have no idea what it is unfortunately 🙁

REPLY
1 reply
nicelymanifest | @nicelymanifest | Sep 1, 2022
In reply to @mikaylar "3 years for me every day, all day. I haven't been able to drive. Had all..." + (show)
@mikaylar

3 years for me every day, all day. I haven't been able to drive. Had all kind of tests, MRIs, spinal blood patches, nerve blocks. I think it's 5G. ????????????????

Jump to this post

This is awful for you! You poor thing. Constant relentless pain is brutal.

Mindfulness, meditation, equanimity, acceptance are worth exploring if not already done so.

I wish you resolution.

REPLY
mikaylar | @mikaylar | Sep 1, 2022
In reply to @agis14 "Hello, has anyone had unexplained headaches and dizziness for a long time? It’s been 2 years..." + (show)
@agis14

Hello, has anyone had unexplained headaches and dizziness for a long time? It’s been 2 years and my mri’s and CT’s haven’t showed anything concerning. Yet everyday on the lower back part of my head (or back of head in general) I have a pulsating or pressure type pain with dizziness accompanying it. Sometimes it’s mild and occasionally it flares up. I’ve been referred to a neurologist but it’s been a long time with no exact cause or answer to this chronic problem. I figured it could be some pinched nerve problem or something since I do have stings and twitches, but can’t know for sure…

Jump to this post

I pray a lot. I'm having a thyroid surgery. Maybe this will help the headache.

REPLY
missybelle | @missybelle | Sep 1, 2022
In reply to @agis14 "Dizziness is almost always present, so it’s similar to PPPD. The pressure makes it feel like..." + (show)
@agis14

Dizziness is almost always present, so it’s similar to PPPD. The pressure makes it feel like I’m off balance rather than room spinning, but a year ago I did have sensations to a spinning room. I haven’t been referred to an ENT doctor since they think it’s neurological.

Aside from that, nerves in my wrists, forearm, and upper arm have begun to sting a bit more recently. Over these 2 years it’s mostly been guesses and pain management for general vertigo and headaches. What I have sounds progressive and I still have no idea what it is unfortunately 🙁

Jump to this post

My dizziness was not like vertigo. I had a pressure and full feeling in my head and my eyes felt like I was dragging along in almost a swaying environment. Riding in the car to various doctors was very hard. I think one of the hardest parts of this was trying to get a diagnosis. I had the primary doctor, the neurologist, the eye and hearing exams, the brain MRI, all while the docs were coming up with nothing. Finally the ENT showed me a video and asked “Is this what you are seeing?” Bingo! She diagnosed PPPD and suggested SSRI type antidepressant which for some reason helps with this and Vestibular Rehabilitation. I’m not taking an SSRI but my mental health therapist said the one I’m taking is very similar so we didn’t change that. Most docs I saw are completely unfamiliar with PPPD as it’s a relatively new term. The rehab therapist made sure to rule out regular vertigo which probably comes and goes in spells. Mine was all day every day. I was able to read and watch tv so when I wasn’t in motion I was comfortable. It’s pretty scary stuff researching on the internet so I would just ask an ear, nose and throat doctor. Sounds like you have a lot going on. My neurologist thought I was having silent migraines and had never heard of PPPD. I’ve never had a migraine in my life so I did not go along with her assessment. Since I just got better over time with a few sessions of vestibular therapy and doing the exercises at home, I think I had a true case of PPPD. Hang in there and I hope you can get things sorted out.

REPLY
Amanda Roe | @amandajro | Sep 1, 2022
In reply to @agis14 "Hello, has anyone had unexplained headaches and dizziness for a long time? It’s been 2 years..." + (show)
@agis14

Hello, has anyone had unexplained headaches and dizziness for a long time? It’s been 2 years and my mri’s and CT’s haven’t showed anything concerning. Yet everyday on the lower back part of my head (or back of head in general) I have a pulsating or pressure type pain with dizziness accompanying it. Sometimes it’s mild and occasionally it flares up. I’ve been referred to a neurologist but it’s been a long time with no exact cause or answer to this chronic problem. I figured it could be some pinched nerve problem or something since I do have stings and twitches, but can’t know for sure…

Jump to this post

Hello @agis14. I am sorry to hear you are going through this. I see other members have since joined you in sharing their experiences.

You may notice that I have moved your post into an existing discussion on the same topic to keep everyone together, which you can find here: https://connect.mayoclinic.org/discussion/chronic-headaches-and-dizziness/

REPLY
bustrbrwn22 | @bustrbrwn22 | Sep 9, 2022
In reply to @missybelle "Luckily my local physical therapy had one therapist who had special training in Vestibular Therapy. I..." + (show)
@missybelle

Luckily my local physical therapy had one therapist who had special training in Vestibular Therapy. I had about 8 exercises to do daily that only took about 10 minutes. It’s hard to describe. The purpose was to induce dizziness but not to overdue it. It retrains the brain to cope and not panic. I would look at colored balls about 4 ft. apart on my fireplace mantel. I would sit 4 ft. away. While looking at the red ball you look out your peripheral vision at the green ball and quickly turn your head to the green ball. Then look periphery to the red ball and turn to that one. I would only do 10 of these. You can see why you need a coach. I got some emotional support from some web sites that demonstrate similar exercises. One is The Steady Coach.com and the other I liked is a uni student in England that greatly explains this condition. Her site is EMJAY styles on You Tube. After about 10 months I noticed the dizziness was waning and the blurry vision as well. I still have some residual blurry vision but I can look from left to right now without dizziness. I stopped driving it was so bad but hope to be able to soon. This confounding condition seems to have a link to people who suffer from anxiety. My ENT said the messages from my brain, eyes and inner ear were misfiring. My eyes felt like they were dragging and my balance was struggling. The ground swayed. It’s been a horrible experience and I hope I don’t have a relapse which can happen. It affects all ages. I count myself lucky after reading other peoples experiences.

Jump to this post

@missybelle. Awesome info!

REPLY
alexandrapurkis | @alexandrapurkis | Sep 12, 2022

My ENT referred me for Vestibular Therapy to help with dizziness and pressure in the head, and the therapy was helpful. However, in hindsight, I think everyone overlooked asking me a very important question: "Had I had exposure to moulds?" If your wife has mould exposure in her medical history, urge her to mention this in any discussions with medical people. I am seeing a Naturpath for help with this.

REPLY
j67topher | @j67topher | 2 days ago
In reply to @missybelle "Luckily my local physical therapy had one therapist who had special training in Vestibular Therapy. I..." + (show)
@missybelle

Luckily my local physical therapy had one therapist who had special training in Vestibular Therapy. I had about 8 exercises to do daily that only took about 10 minutes. It’s hard to describe. The purpose was to induce dizziness but not to overdue it. It retrains the brain to cope and not panic. I would look at colored balls about 4 ft. apart on my fireplace mantel. I would sit 4 ft. away. While looking at the red ball you look out your peripheral vision at the green ball and quickly turn your head to the green ball. Then look periphery to the red ball and turn to that one. I would only do 10 of these. You can see why you need a coach. I got some emotional support from some web sites that demonstrate similar exercises. One is The Steady Coach.com and the other I liked is a uni student in England that greatly explains this condition. Her site is EMJAY styles on You Tube. After about 10 months I noticed the dizziness was waning and the blurry vision as well. I still have some residual blurry vision but I can look from left to right now without dizziness. I stopped driving it was so bad but hope to be able to soon. This confounding condition seems to have a link to people who suffer from anxiety. My ENT said the messages from my brain, eyes and inner ear were misfiring. My eyes felt like they were dragging and my balance was struggling. The ground swayed. It’s been a horrible experience and I hope I don’t have a relapse which can happen. It affects all ages. I count myself lucky after reading other peoples experiences.

Jump to this post

I’m now 15 months into PPPD. I’m working with a PT / Vestibular Therapist who has me doing the same eye exercises. It’s been the worst year+ I’ve ever experienced. I also watch the “Steady Coach” on Youtube. It is very informative and helpfull with information and how to regain my life back. It is a very debilitating condition.
Stick to the therapy and get out and start doing those things that you once did before you had symptoms. Take it slowly and your brain will start to reawaken. I’m starting to have good days, 5/10 sometimes 4/10. Most of the last year its been 8-10/10!!

REPLY
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