THEMA:

Hello everyone!

More than 2 weeks ago I was diagnosed for Cogan syndrome here in Slovenia.
Everything has started in 19th of August. Some symptoms I already had earlier this year but I going to explain this other time. The following symptoms were more consecutive.
First starts with iridocyclitis on the right eye. I went to the doctor where they check my eye and prescribed me dexamono, navinac and natropil eye drops. Next day my eye was better but I starting to feel that my left hearing is reducing. Then the day after it strikes like a lightning from the sky, I woke up with hell of a vertigo which persisted for two days. My hearing has reducing drastically. I went to the ORL specialist and that day I starting to feel a small pain behind the ear, I did not pay attention so much on the pain but I have mentioned to the doctor.
I did some hearing test and the result was not so good for the left ear. He looked in my ear (clean path, no wax), nose and he did not see any sign of bacteria or something unusual in sinuses. There was no sign of infection. The affected part was inner ear, there was an inflammation on the vestibular nerve and most probably auditory nerve. How this has happened he did not know, maybe virus he said, it is hard to diagnose, it should be gone in a week or more.
I do understand that doctor had no clue what has happened and I also know that he did everything to find cause of my problem.
Just day after the ORL visit I had pain on the left side of my head around the ear. It started at the back of the ear and then spreads around it. Pain has lasted less than a week with a strange frequency, tinnitus and total hearing loss. The pain was gone and over the weekend I felt fever or more like burning in my sinuses. This was really strange it happened only in the late afternoon and persist over the night. On Monday 31 of August I went back to the ORL clinic, my case was in hand of the another doctor. I did all the tests again, the difference was only balance test which showed that left balance apparatus does not work well. Doctor prescribed me Medrol to prevent spreading the inflammation. I took 64 mg Medrol for six days, then 32 mg for two days and next two days 16 mg, together with Betaserc for blood circulation. Meantime this medication therapy I did MRI of my head. After ten days I visited doctor again, he saw that nothing has changed and that the last option is intratympanic application with dexamethasone. Doctor explained me that this application helped at 70 or 80% patient and that it might not work in my case. I agreed with it but nothing has changed yet. Maybe something has changed but it is hard to say or predict when this progression is gonna be seen.
Now let start with the new chapter
Just day after the ORL visit I got fever in the evening. I decreased temperature using medication and after 2 days both eyes were inflamed. Now it was different, it was not iridocyclitis, eyes were red and sensitive on light. In the evening I went to the hospital, for the first time they check my blood parameters, CRP was 250 and leukocytes were also over the range. They performed again blood withdrawal for further analyses (hemoculture blood test). In next two days I have recovered for red eyes, visit again ORL specialist (3rd doctor) due to my hearing change in the right ear. Balance apparatus on the left side was not responding and the right starts to losing function too. Hearing on the right ear has changed too but luckily not so intense. ORL doctor sent me to the neurology department. They took blood, again for hemoculture test, the first test did not show any changes in two days. So they did all the checks on me, many different questions and at the last when they examine MRI result the first possible diagnose was MS or multiple sclerosis. Why?
There was written ''demyelination of the white matter in the brain'' what sometimes refers to MS. At the moment this was only connection with my symptoms. I was hospitalized at the same moment, I also did MRI that day. Next day, they took cerebrospinal fluid to confirm together with MRI if it is MS. The results were negative so they came to the conclusion that most probably I have Cogan syndrome. They relocated me from Hospital Izola (its on the coast side of Slovenia) to the rheumatology hospital in Ljubljana. There I was on Medrol 250 mg for three days to decrease CRP value, which drop down to 44 mg. Then I take in next days 56 mg of Medrol and once MTX, CRP has dropped down to 21 and I was free to leave the hospital.
In 24th of September when I left the hospital in Ljubljana I was on Medrol 56 mg up to 5th of October and from that day on I am decreasing dose for 4 mg every week, down to 16 mg, then every 2 weeks for 2 mg down to 4 mg. Together with Medrol and other supplements, I take MTX once per week, every Wednesday. This Friday I have check in Ljubljana how this medication affect on me.
So this is how it ends at the end. As I wrote above I am at sick leave from August 19th, still have some balance problem, deaf on the left ear with tinnitus but promptly treatable.
I think if I wouldn't accept medical care, most probably I could lose hearing on my right ear and much more. I am aware that medications have side effects, I am experience with side effects right now. This is making me thinking to find another possibilities to cure this disease.
I already started with alternatives like, hyperbaric oxygen therapy, I went through ten therapies already. Now I am thinking about CBD, but first I have to get reliable information's from the scientific articles or specialists how CBD interacts with medication I use.
I think that there are many ways to stop or cure any of the autoimmune disease. We have to seek and participate in as many as possible.

I wish all the best to all of you and I will keep you inform how treatments work on me.

All the best,

Klemen

Hello Klemen,

you have certainly had a most dramatic couple of weeks. Much of what you write about sounds familiar to me - as it will to others here on the forum.
From what you describe, the diagnosis and the treatment you have received to date seems excellent and in line with what I have learned about it.

I was diagnosed more than 10 years ago and for many years, my biggest fear was that I may lose my hearing until someone pointed out to me that this was something that could be remedied easily with implants and hearing aids. (I still can hear very well.)

In my case, the diagnosis of Cogan syndrome was made as yet another symptom of an underlying autoimmune disease - autoimmune hepatitis and ulcerative colitis, auto-antibodies (so-called ANCA) were detected immediately after I got ill the first time. My main symptoms have been vertigo attacks and exhaustion with fever.
I have been treated with cortisone, MTX and biologicals (monoclonal antibody/rituximab) over time. Currently, I am only taking 20mg MTX/w.

As far as I am aware of, there is no cure for an autoimmune disease but with regular follow-up and careful monitoring of maintenance medication, remission can be reached - to an extent.

However, in my situation, vertigo appears to be impossible to control. In recent years,
I have noted an increase during the hot seasons and also if I experience a herpes simplex virus infection, but this could be anecdotal. Also, high dose betahistine (4 x 24mg/d) seems to lessen the severity of an attack.

Another major factor is stress, both physical and mental. I had to learn to listen to signs and symptoms and to stop pushing myself too hard. This resulted in many changes, including a reduction of my working hours, new sporting activities and far less social commitments.

On the positive side, I would like to reassure you that over time, you will adjust and can discover a new and even pleasant way of life with this disease. You will learn to take care of yourself differently from when you were healthy. I wish you all the best. Stay in touch.

Hello Sabine,

thank you so much on reply on my story and thank you for yours.

Your story also tells that you went through a hard time. I mean none of our story on this forum is pleasant but some of us has intense symptoms like you, beside Cogan the other autoimmune were found.

I wrote at the beginning of my story that I had suffer for another symptoms this year. Everything has started with abnormal allergy, I am not sure if this was a trigger, but this year was really intense than the last years.
In month May diarrhea stared for about two weeks. I started to consume probiotics and let say when I went to the toilet it was better but not as it should be. Blood results were ok. In month August, I was sent to colonoscopy, it was removed one polyp from large intenstine the other part of it was fine. At the small intestine doctor saw a small inflammation and I think this was most probably the beginning of the autoimmune disease.

I agree with you what you have wrote regarding the stress. All this years I have been working, I was constantly under the stress, I do really exhaust my body. And because I didn't take care even when I do some sport, I haven't eat proper food or drink enough liquid, everything has jus accumulates and at the end body attacks itself.

Anyway, now it is important to look forward and live with it. I am glad that I can be a part of this forum where we can share our experiences with this or other diseases. Every story from each of us can make our life better.

I will stay in touch to share my further experiences, or if I would have any question, I would be more than happy if I could turn on you.

Thank you again and I wish you all the best.

Hello Klemen,

thank you for your detailed story and I really admire your positive attitude! But I think that's the right attitude to face the disease!
As the months from August to October must have been very hard for you, it's great that the doctor's found the right diagnosis in such a short time.
In a lot of cases, this takes years sometimes.
It's also great that you try some alternative therapies - I'm curious about your experiences when you share them with us!
I also tried some alternative therapies - acupuncture for excample. But unfortunatelly it didn't work.
As you and Sabine said already - reducing stress can be very effective indeed!
I'm deaf now since 3 years on both ears and I'm happy about my Cochlea implants.
My left ear and vertigo organ stopped to work already 9 years ago and I fighted with some autoimmun suppressiva and cortisone to rescue my right ear.
But in the end we lost that struggle 3 years ago.
It sounds strange - but in the end I was some kind of happy about this because the everlasting fear of getting deaf has ended now and I'm really happy that I can hear reliable now with my two Cochlea implants.
There are still some hard times when the disease rises again (vertigo or inflammable eyes in my case), but luckily this has become rare after the "main goal" of the disease (in my case my ears) was achieved.
I hope this will last for many many years...

I wish you all the best with your therapies and would be happy when you share your experiences here with us in this forum!

Take care and cheer up!
Katrin

Hello Katrin,

thank you so much on reply on my story and thank you for yours.

I couldn't imagine right now to loss hearing on the right ear too. I am happy to hear from you that even at the end you lost you hearing you are satisfied with Cochlea implant. I believe that every such an experience is painful at the beginning but at the end we always accept other alternatives. It is important that Cochlea works for you and let it stay this way forever.

You mentioned that you try to save your right hearing with medications. So it means that at the beginning of the Cogan, you first lost hearing on the left side and even you were on medication, hearing started to reduce also on the right side, or you did not take any of the medication at that time?
What kind of medication you are taking now?

I was at the ORL clinic this week regarding the Cochlea implants. The point is that our government for health does not cover the cost of this implant. Everything is self payable, maybe insert of the implant or surgery part not.
How is in your country? I would ask you for some information what is the procedure? How they found out that you are the right candidate? So most probably it is important that auditory nerve from the Cochlea (snail) in the inner ear is not damaged?

Thank you for your answers in advance. You do not have to hurry with it, take your time, whenever you will answer I'll be happy.

I wish you all the best,
Klemen