The mystery of my symptoms 🤔
Hello, I allow myself to write this message because today I live with a daily sensations of dizziness, instabilities (I have other symptoms that I list below in my message). I am French and in France, there is a huge delay in medicine. The diagnoses when there is vertigo are very very hard to find here. That’s why I am writing here.
Here is my story to better understand (sorry it’s super long and sorry in advance if you see English faults 😬) :
* 2014: rotating vertigo with nausea and inability to get up. The diagnosis of ENT was a problem with the crystals. After taking tanganil, these gradually fade. Since then, every year I have had a few vertigo but it goes away immediately.
*2016 : head trauma from a fall + I had to wear a neck brace for my necks
* 2017: cervical x-ray because of persistent pain. They found that I have a chronic neck pain (cervicalgie in French) and a loss of cervical lordosis.
* 2019: rotatory vertigo again. I make an appointment with the ENT who certifies that I see nothing. No crystal problem, nothing. The vertigo passes quickly.
* 2020: in June, large rotatory dizziness, which passes in 24 hours.
I went to a new ENT who told me that He found an old vestibular neuritis with a deficit of 43% on the compensated left ear. This old neuritis dates from 2014, in my opinion, when the real big first dizziness came. The ENT assures me that the dizziness and pitching sensations that I currently have cannot come from this because my brain has compensated for this deficit.
From that moment until today, I have been experiencing everyday vertigo (more the sensation of vertigo that a « real » vertigo)/ pitching when walking / dizziness / light sensitivity / pain around my eyes when I press on my eyebrows / sensation of « heavy eyes » /visual fatigue and blurred vision / the impression of seeing flying flies (Not sure that you say that in English 😁 but it’s when you see like little black points moving)
In ad of this symptoms, I have some migraines because of my cervical. When the migraine comes, the sensation of dizziness disappears. But when it stops, the sensation of dizziness/vertigo reappears.
I saw a vestibular physiotherapist with who I did few vestibular rehabilitation sessions. She told me that she could not tell me if my daily dizziness is from my old vestibular neuritis because it is too old.
She thinks that my symptoms may also be due to my bowel problem (I have irritable bowel syndrome and leaky bowel, because of that I have some small vitamin and mineral deficiencies, and dehydration).
She also thinks that all my symptoms can come from my neck (cervical) and a possible compression of the arteries or nerves.
I am currently seeing an orthoptist because I have a little convergence problem with my left eye. He told me there wouldn't be a lot of sessions to do. He confirmed all the possible diagnoses that were told to me by my vestibular physiotherapist.
Sooooooooo, i was thinking that maybe I have a vestibular migraine or the Barré Leiou syndrome (due to my cervical). Or maybe be after-effects of my old neuritis that come when I'm tired, anxious. Oooor not a Barré Leiou syndrome but a compression of some nerve/artery in my neck.
As you can see, today I’m just lost because I don’t have a clear diagnostic. Just possibilities.
I can’t find a doctor that can find exactly why I have all this symptoms everyday. It’s why I come on this forum today. If someone recognise himself/herself in my comment, or if you think of something, tell me 😁
I have very similar symptoms! The pitching of my body when walking on the ground, the dizziness and also the pain in my eyebrows.
I was also recently educated about vestibular migraine, when I heard of The Dizzy Cook and her website. I've been trying to avoid migraine triggering foods, in case that helps at all. Have you considered trying the Heal Your Head Diet, to see if your dizziness is being triggered by foods?
In any event, I suggest that you watch Alicia Wolf's (The Dizzy Cook) interview on Youtube, with the doctors who record Talk Dizzy to Me.
I'm so sorry, I meant to address you as Audrey 🙂
@soniacn Hi Sonia ☺️ Don’t worry about the name, it happens haha
Thank you for your answer. I’m happy because today I can say that I have a diagnosis. I went to a dentist who have got a specialisation in the occlusion (the jaw’s position). And he told me that my jaw was not in its naturel position anymore and it can explains all of my symptoms. I made some exams which showed that I have so many cervical knots ( don’t know if it’s the good word hehe) that it compresses my vertebral artery and my brain (especially the cerebellum which is essential in balance) is poorly oxygenated, which explains the sensations of dizziness. I went to see an osteopath today and he confirmed to me that my cervical muscle knots (which compress the artery) were due to my jaw (my jaw muscles are too stimulated all day because of my occlusion problem, and the muscles of the jaw are directly linked to those of the neck). This jaw problem is due to the braces I had as a teenager. So my vertigo do not come from a vestibular problem but from a jaw and cervical problem.
So don’t forget to also check this ! 😁
Thank you again for your answer.
I'm so glad you finally got a diagnosis! As soon as I read your message I went and made an appointment with a dentist 🙂
Do you mind telling me what kind of exams you did to indicate the cervical knots?
@soniacn Hello Sonia ! Thank you. I hope for you that it will be the same diagnosis because it’s « easy » to heal.
I hope too that your dentist have a specialisation in the occlusion and jaw disorder (I went to a dentist with no specialisation and she was not able to tell me if I had a problem with my jaw).
For the knots, my osteo told me that in 1 session, normally the knots should disappear. He untied me the knots I had on my neck, shoulders and jaw. He told me that if I was still feeling dizzy, I had to do a second session. If after 2 sessions I still had dizziness, I then had to do the treatment proposed by my dentist, which consists of wearing a rigid splint at night for 3 months. During these 3 months, I will have several appointments in order to modify the shape of the gutter to restore my jaw to its natural position. The osteopath told me that by breaking the knots, it would help my jaw relax and position itself naturally better. But it is possible that this is not enough and that I need to wear the gutter. In addition to that, I have therapeutic massage sessions with a physiotherapist to do to prevent the knots from settling in the long term.
To see what was happening with my cervicals, I did a doplere echo to check my veins and arteries in the cervicals. It was thanks to that that I knew that I had a lot of knots that were compressing my vertebral artery.
I think you can ask your dentist to give you a prescription for a doplere echo.
I find it impressive what a problem with the jaw can create (even pain in the knees, chest, eyes, lower back etc can be due to a jaw problem).
Do you have jaw problems? For example, I have ear pain, sinus pain, small crackles when I open my jaw in big, chattering teeth when I speak etc. These are symptoms that indicate there is a problem with the jaw.
When do you have an appointment with your dentist?
Keep me in touch about what he'll tell you ☺️☺️
I forgot to ask you : do you do bruxism during the night? (I don't clench my teeth, but I have found that my teeth are touching at night and sometimes during the day - it's a rare form of bruxism -. It's a comfortable position for me but it's a very bad position for my jaw)
Thank you for your reply! It's so helpful! I don't do bruxism, but I do feel even dizzier when chewing and talking. In general, I have a constant dizziness that is always there, and when I walk I often feel like the ground is moving. I'm seeing my fourth neurologist, who also practices some eastern medicine. He wants to try acupuncture in the inner ear as well as injections that will numb the nerves in my forehead and neck.
I actually had an MRI of the cervical spine and that came back "normal". However, my chiropractor did an X-ray of my spine and it's pretty crooked.
I'm seeing the dentist on December 15th and I'm hoping he can at least point me in the right direction! I'll keep you posted!
When are you starting your new treatments?
Your symptoms are as diverse as mine 🙄
The fact that your dizziness is more present when you eat or speak could be a problem of the jaw. Same for your back. But I'm not a doc, so the thing that I say can be totally wrong haha
I also did an MRI of the cervical spine and the radiologist said it was normal but it was totally wrong (I have a loss of cervical lordosis for several years and the osteopath confirmed it). Maybe ask a second opinion about this MRI.
If you really want to rule out the diagnoses, I advise you to ask your dentist for a doplere echo. It's a simple cervical ultrasound.
I'm sure you'll find out what you have ! You have to persevere in going to see doctors (even if it is expensive 🙄)
Have you ever been checked your eyes ? I had a problem of convergence in the left eye (also due to my jaw).
I don't know when I’ll start the treatment because it is very expensive. I am waiting to see if the osteopathy sessions will make an improvement on my symptoms. If I continue to feel dizzy then I will do the treatment. But when, I don't know. Quickly for sure ☺️
Yes, I also had my eyes checked! I did 12 weeks of vision therapy to convergence issues as well!
Thank you for suggesting the Doppler echo. I hate to sound ignorant, but it's that an evaluation of the heart?
How did the osteopath diagnose the loss of cervical lordosis? Was that a different test?
Sorry for all the questions!!!!
@soniacn Hi ☺️☺️
Ok for The convergence. Do you have the impression that your symptoms are more present on one side than on the other? (for example for me, I had a convergence in the left eye, neck pain but more on the left side, pain in the eyebrows but a little more on the left side etc).
And don’t worry about the questions ☺️☺️ The doplere echo can be carried out in different parts of the body to check the proper functioning of the veins and arteries. The equipment is the same as for a normal ultrasound. The doplere echo can be achieved anywhere (especially in the legs). But I did a cervical doplere echo, in order to check the functioning of my veins and arteries in the neck, and it is thanks to this that they found that the muscular knots of my cervicals compressed my cervical artery.
Maybe the term echo doplere exists only in France and that there is an other word in English for this exam.
For my loss of cervical lordosis, I had an X-ray 4 or 5 years ago because I still had neck pain. This is how I could see that I had a loss of lordosis. It's quite "impressive" to see. The cervical spine is totally straight, whereas it should be curved. And when I touch the neck (behind) of my boyfriend and that I touch mine at the same time, I very clearly feel the difference. So straight for me, and so curved for him haha.
I did an MRI 3 weeks ago (requested by my ENT) and showed it to my osteopath. That's how he saw that I had a loss of lordosis (and because I told him). The loss of lordosis can also be seen on an X-ray or MRI.
I hope that I was clear ☺️ it’s a bit complicated To speak when I have to use medical terms haha
My weakness is definitely on my left side! My left eye is much weaker, my left eyebrow has pain, my left ear has the vestibular deficit as well. So, like you, it's the damn left side haha.
My new neurologist (this is my fourth neurologist) is a Chinese doctor who wants to also try acupuncture on the ear. However, he did ALL of the nerve testing. He did the ultrasound of the neck and the head as well, to check the veins and arteries. We did the carotid artery test (carotid duplex) and all blood flow seems to be okay. But, the dizziness is still there!!
I even did a CT Scan of the inner ear. That was "normal". I had three brain MRI's and a brain CT Scan.
I have persistent neck and back pain, and the dizziness that doesn't go away. My optician suggested getting blue light glasses for the computer screen and for regular bright lights (like supermarkets). Those are very expensive but I might need to try that.
I've been seeing a chiropractor since osteopaths in the US tend to be seen as more alternative medicine and are often NOT covered by insurance (unfortunately!!). It's all so frustrating.
I have a five year old and I just want to be able to run and play with her again! But, with this disorder it feels so impossible. I really want some relief!!
Thank you so much for your answers!!!
Bonjour 😁 (I never know what hour it is in your country so I’m telling your Hello every time haha)
I feel you so much and I hope sooooo much that your appointment to the dentist will allow you to find something. I was in the same situation than you, and at the end I wanted a diagnosis and not just a « ok you don’t have this ». It’s terrible to hope to have something but when you’re not feeling well you just want to know what happens in your body to heal you.
I’m sorry that this situation changes your life with your daughter. I’m sure that is gonna be ok soon and you’ll be « you » fully again. I don’t want to use the word « normal », because Yes, before you were normal, but you are normal today too. Life challenge us all the time, and accepting this challenge (health issues, sentimental issues etc) is the key. I mean, it’s my vision of the life ☺️
It’s whyyyyy, in my case, I think that anxiety doesn’t help me at all. When I’m feeling dizzy, I stay focus on this symptom and my dizziness are more intense and present. I mean, I think. I’m gonna see a psy because since 2014 I have had such traumatic events (by the way, my symptoms starts just after my first traumatic events). I think I need to talk about all this bad and hard memories, and ask for « help ».
Don’t thanks me, it’s totally normal to reply to your questions and I’m really happy to do it ☺️
Did your neurologist tell you that you may have a vestibular migraine or pppd ?
So I did the X-ray of the cervical spine with my chiropractor and yes, it is incredibly "off". It's straight on top, and then curves back and forth like crazy. She wants to start intense treatment which will be very expensive (she thinks it will require 72 treatment sessions) to realign the bones. But she also thinks this could be causing the dizziness.
Next week I see the dentist, so maybe he'll have an answer!
My neurologist doesn't think it's PPPD because it hasn't healed, even with vestibular rehab. It could be related to vestibular migraine so I'm trying to avoid foods that could trigger migraines. My neurologist is also doing injections to numb the nerves in the head and neck.
I definitely think it's related to my eyes as well, since the bright light of the computer, my phone, or big stores makes me very dizzy. I know I should get the Blue IQ glasses as well, but want to wait until I see my optometrist on Friday before ordering them.
How is your treatment going this week?
Hi Sonia !
How are you ? ☺️ So, how was your appointment with the dentist ?
I feel like my dizziness comes from my eyes but I think my eye sensitivity is just a symptom and not the cause.
72 sessions ????? But of what exactly ??? It’s... huge ! Usually, we can have like 10 sessions maximum at the chiro/osteo but not more, no ?
I’m still feeling dizzy even with 1 session of osteo. But I can see a difference about the pain in my neck, so it’s a good point ☺️ I think I’m gonna do the dentists treatment in January.