Suffered for 15 years

New here, let me introduce myself šŸ¤
1

I really donā€™t think there is a lot I donā€™t know about this subject.

Iā€™ve suffered for 15 years. The first 10 I was wrongly diagnosed despite paying to see a number of so called experts in their respective fields. I must have seen at least 10 experts and had numerous tests carried out. This excludes all of the alternatives I tried.

About 4 years ago I finally got the correct diagnosis but it turns out the so called experts referred to above treated it incorrectly. These include a psychiatrist, ENT consultant and vestibular rehabilitation expert.

I preserved with the various instructions given that interestingly didnā€™t differ from those given for the misdiagnosis.

About a year ago my symptoms/ sensation got out of control and started to takeover. For the first time ever I experienced anxiety like I never new existed.

On the back of feeling dreadful despite doing all I was instructed to do to the letter I decided to seek a second opinion.

I saw Dr Surenthian who I know a number of other members have seen. He confirmed the diagnosis without the need to do very expensive tests.

He confirmed that I was pretty much doing all of the correct things but at the wrong time, in the wrong way, taking the wrong medication and ignoring some obvious things. Basically I was wasting my time and he wasnā€™t surprised I felt so so ill suddenly. I had survived the last 15 years most of the time but each day I had the symptom of feeling fuzzy headed, flickery vision, stiff neck, tinnitus and often a feeling of dread.

So whatā€™s the plan now. Diet - this has already showed good results I believe and was never mentioned to me in the last 4 years. I was eating los of things that donā€™t help the migraine. Rest - I have two young children so this kind of fits in but early to bed and a regular pattern of sleep. Physical exertion - I was running to try and make myself feel better. No more. Walking is fine. Meds - swapped meds as the ones Iā€™d taken for the best part of 10 years do nothing for migraine. The new ones so far seem to be helping me. The anxiety has calmed significantly and Iā€™m feeling more positive. Physio - completely the wrong time to be doing them until things have calmed. The so called experts had me doing them 10 times a day to the point where I guess I reached breaking point. I broke.

Iā€™m the most optimistic Iā€™ve been in years about the migraine and by recording matters daily in a diary I can see clear patterns. This tool should also help me when things arenā€™t running so smoothly.

I could keep on writing about my story but purposely want to keep it as brief as I can.

Iā€™m happy to expand on any points Iā€™ve made if I can.

Best.

Jonathan

1 Like
2

Jonathan,

Holy crp, 15 years, thatā€™s tough! Do you recall anything that might have ā€˜kicked it all offā€™?

What was your misdiagnosis?

What are your new meds?

And anything in particular youā€™ve had to change about your diet? What were your bad eating habits?

Sorry for all the questions, cheers!

James

3

As a child I had migraines.
I was getting very run down and probably stressed. I had a week of feeling very ill and when I finally got up it felt as though my head wasnā€™t screwed on properly. This is when the fun started.

4

Inner ear problem. This is quite common Iā€™m told as a misdiagnosis.

Iā€™ve tried a few but am now venlafaxine. Before I was on citalopram.

Diet wise - Iā€™ve cut out lots. Dairy, caffeine, citrus, chocolate, eggs, bananas, processed meats, cheese. But there are easy replacements soya milk, goats cheese etc.

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Yes I think diet can really help. Iā€™ve substituted cows milk with almond milk recently at the same time as cutting out most chocolate and noticed improvements.

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Hi Jonathan,
15 years !!! You have had it rough. Wish it gets easier from here. Did you pick Dr.S based on this forum.

What is the dosage for Effexor ? Hopefully it is the XR (extended release). How long you been on it and any side effects so far ?

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Have you seen Dr S?
2 months @ 150 mg. theyā€™re not extended release. Are they better?

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No side effects!

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Hi Jonathan,

I am in the US and hence cannot see Dr.S :slight_smile: I am told the Effexor XR is better. Since you are already doing well on the basic Effexor with no sideffects i would not change. How is your sleep, i hear folks finding it difficult to sleep on Effexor.

How are your daily symptoms compared to before the medication. Is the Effexor helping you more than the citalopram. I have a bottle of Effexor XR which was prescribed and i have not started. I am doing 20mg Amitriptyline and am at 80% of normal on most of my days i would says. Before the meds was more like 50% and Amitriptyline gave my sanity back. Definitely not normal but i would take the 80% anyday. Trying to see if a low dose Effexor XR could advance my progress or should just stick it out with the Amitriptyline.

As for triggers i know Coffee definitely is one and i switched to its low-caffeine-brother the tea and doing one cup everyday. I know sugar in the form of pastries is a trigger but still to come up with more food triggers.

I am surprised you had migraines as a child and still took 15 years for all the specialists to piece things togetherā€¦SHAME !

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Iā€™ve slept fine on it. The symptoms have softened considerably but are still lurking. Iā€™ve been doing very well for 3 weeks but have annoyingly picked up a cold. This has sent my mind into over drive. The tinnitus is louder and the fuzzy head and eye sight fuzzier. The meds are helping with the anxiety but it is still very much pumping through my body. Itā€™s very frustrating as I never used to suffer from anxiety with it at all but only in the last year. This is when I was at my worse under the supervision of the so called experts.

How long have you suffered for and is it constant or episodes? What meds do you believe have been the best for you?

Dr S may add something else when I see him in November if itā€™s not anymore calmer. Heā€™s achieved a lot with me so far in a short timescale but there is a way to go yet.

This is by far the hardest illness to explain to people.

Best.

Jonathan

11

Has anyone tried Silicone ear plugs to block sounds (every little low frequency sounds)? I have had every diagnostic tests in an ENT book other than exploratory surgery. I have been to many world fames neurotologist and Neurologist in Canada and USA. After 23 yrs of suffering(oscillopsia, disequillibrium & dizziness ), I figured out that the reason for my dizziness was sound such as in car rides, running water, exhaust fans? AC/Heater fan etc. I plugged my ear with Silicone plugs (1 ear at a time 24/7 for a week ) and found out that it was my right ear giving me the symptoms. Now I wear a custom made silicone ear plug in my right ear and the symptoms disappeared. Symptom comes back if I am exposed to the sound without the ear plug. Good luck!

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Gracey did you ever get a hi-res CT to check for SCD? If not then agree probably a window fistula which would be helped with a plug. Perhaps that may even allow it to heal. The other technique they use is to embed a tube into the drum to reduce vibration. Iā€™ve given my ears a break from loud music and headphones for a bit.

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Yes, multiple times and ruled out SSCD in all 3 canals. Here Is my story and how I diagnosed myself. I originally started with neck and shoulder pain. I then suffered vertigo, disequillibrium, & oscillopsia (images jump)for over 20 yrs intermittently and 24/7 last 4 years. I was 39yrs old when I had the first attack. It took me 24 yearā€™s to figure out that sounds created my symptoms. I have been through many experts in Canada and USA for a diagnosis and most of the experts couldnā€™t get to a diagnosis. Some of them even prescribed me antidepressants. They tried every antihistamines, neuroleptics and many other drugs to help me. All these just only ruined my liver and kidney. I had every diagnostic text in an ENT book other than exploratory surgery. Being a masterā€™s prepared nurse I refused to accept that diagnosis. I lost my nursing license as I couldnā€™t go back to work. I then started keeping a very descriptive diary, hour to hour and figured out that it was always certain activities that is producing my symptoms. As a last resort, after a lot of research I started using Silicone ear plugs fo a week (remember it is important to plug only one ear 24/7 at a time for a week so that you can hear and at the same time figure out the problem ear) and I realized that it is low frequency sounds that was giving me the symptoms. Any motorized sounds produced the symptoms, even the sound of a running water, meals (especially the food that makes the sound when you chew, exhaust fans, AC/heater, cars, TV, music etc. I was told I have a supersonic hearing and I was so loud. Hope all of you can give it a try with Silicone plugs and see if it makes any difference. This problem is called Tulio phenomenon. It is caused by either SSCD, perilymph fistula or from a thin bone beside the ear. If it is SSCD you can patch it. For other situations, we donā€™t have much options other than avoiding the sound entry into that ear. If we do surgery we lose 30 to 40 % of our hearing in that ear. We can have custom made ear silicone ear plugs which causes only 30 to 40 % of hearing loss. If you plan to use it, just only seal the entrance of that ear you plan to block. Please donā€™t push it into the ear drum. Make sure you air the ear when you are not exposed to the sound (I mean pindrop silence). Now, I only get the symptoms if I am exposed to sounds and I forgot to wear my custom made silicone ear plug. Now I watch TV, drive and is able to go back to my normal routine. Please remember, this is not a medical advice. These suggestions are only for people who had proper testing and treatments before trying this out and only if your treatment is not working. Could you all please let me know through my email (please write ā€œVERTIGOā€ in subject line so that it doesnā€™t end up in trash/spam)below if the Silicone plug worked for you as I would like to join a neurotology group to further the research on Vertigo/disequillibrium and ocillopsia. If you have any questions, you can email me at gracymathew.kalath@gmail.com. There are too many of you struggling with this illness on Facebook and I canā€™t keep up with the Facebook comments. So please email me if you have any questions. If you get my story more than once that doesnā€™t mean I am trying to sell Silicone plug or send you spam. I trying to help as many vertigo sufferers as I can as I canā€™t keep up with the names. Good luck!

Thank you
Sincerely,
Gracy

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From my understanding if its a PLF you can patch it too, but doctors are divided on how reliable the patching is - my ENT surgeon says 75% success rate, whereas Hain suggests 66% failure! The only two people Iā€™ve know who have had that done have failed surgery (neither are my doctors patients, but still). I suspect a fistula ear becomes ā€˜Hydropicā€™ which makes it trickier too, as the pressure will want to push the patch off.

My vestibular symptoms are all but gone during the day, but night is where I currently have the problem ā€¦ its the head pressure when reclining thatā€™s now holding me back, not sound during the day.

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Hi Gracy,

I recently had VEMP testing and there is reduced response in my left ear and the doctor suspects SSCD. Though i have none of the classic SSCD symptoms. Need to ask the doctor if hydrops can cause reduced response.

For some people the CT scan does not show a dehiscence or hole but the bone structure itself could be thin in both ears due to a genetic predisposition. In this case surgery is complex and they create a hole and then patch it and results are dicey at best. I suspect in your case it might be thin bone causing SSCD ?

Is it only external sound or do you hear your chewing , some people even claim they can hear their eye ball moving. Glad the Silicone plugs are working for you.

Thanks
Vignesh

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Vignesh are you planning on hi-res CT? Make sure its cone-beam and the most modern machine you can get access to to limit radiation and give best images.

I canā€™t imagine its easier to damage the bone, even thin bone, than a window membrane?

Also Iā€™d wait a while and see if symptoms improve ā€¦ that might rule out SSCD because apparently the bone never heals so your symptoms would never significantly improve?

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Hi Jonathan,

Thanks for responding. Did you symptoms change in the last year causing more anxiety ?

Mine is more a constant feeling currently. I used to have episodes where the chronic symptoms got worse and i got vertigo spells. This was mostly caused by the migraines. Now the migraines are in check thanks to the Amitriptyline but the constant imbalance is there. I still get migraines once in a while but prior to medication it was a daily happening.

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Our conditions are soooo similar.

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I went through quite a long list of research and decided not to go that route

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Forgot to mention that I had a head injury and a long haul flight before starting the first symptoms