Extreme TINNITUS and BRUTAL pain

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Hello my friends!

Im new in this group and i suffer from debilitating symptomes. And im searching for advices and support.

My first symptomes started during my late pregnancy in year 2019. It started with sharp pain in my bladder and a feeling that a needed to pee but i could not pee. I also had a very intense pressure towards my chest, it felt like i had lactic acid in that region. When i laid on my back or sat down i felt like i was going to pass out.

I also had an accident with my lower back in a chair at the gynecologist, because the footrest/leg support on the chair broke so that my back turned like a U backwards very quickly. On top of everything i got constipated several times throughout the pregnancy.
One time it was a very very bad constipation that needed treatment with an enema in the emergency room.

My symptomes with the bladder got worse with the C-cection and the spinal tap/spinal anesthesia. The maternity clinic/womans clinic send me home within only 2 days after my C-section even though i still was in pain and had numbness on sertain areas of my lower body. I went numb in the cauda equina region and i could not feel my bladder filling with urine. I had to set the alarm clock to know when i needed to get to the bathroom. I also got numbness in my genital area, i also could not feel when having my period. Previous to this i always had great pain with my periods, so it definitely was a big differens.

I also had trouble with number 2, bowels problems. I needed a medication to be able to empty my bowels and when i stopped the medication i had no muscle power and i could not feel that I needed to go.

As i could not get help or answeres anywhere for my somatic problemes i got depressed and cried very much. I went to the psyciatric clinic 3 times in a row asking for help, and the third time they locked me in and would not let me out. They gave me antidepressants and forced me to undergo 4 treatments of ECT (electroconvulsive therapy).

After going through these treatments i got very bad pain in my jaw and i could bearly open it or close it. I also felt like i was in another reality and my “recent memory” dissapeard. I didnt know where i was. Of course these treatments did not help me as i had psysical, somatic problems.

My bladder started to feel wierd, as the numbness slowly faded away and i could finally feel my bladder fill up again but i had sensory disorders. With time my bladder started to hurt again and also the urethera. It felt like fire and acid being poured into my bladder while it filled up with urine, just like it did during my late pregnancy. So i thought it was urine infection but all tests where negative and the cystoscopy did not show anything wrong. I got botox in my bladder but it made the pain worse

Different doctors gave me a lot of medications to camouflage my pain but nothing really worked. I was given 21 different kinds of meds, it was anticonvulsants, antidepressive, lyrica, amitriptylin, tegretol, benzos, opiates, morphine in tablets and in vein, mexitiline, lidocain in vain that numbed my toung for a few seconds, ketamine in vain and some other medications. I did not get any help from the somatic health care,

My nerve symptomes went away in spring 2021, just a few weeks later i suddenly got slight tinnitus after a party with loud music. And i also got hyperacusis (sensitivity to sounds) the tinnitus got worse and i got pain around my ears and some numbness. The pain kept getting worse and then the pain radiated to the back /bottom of my toung, on right side.it felt like someone put a screwdriver in the back of my toung. Right side. Then i had burning pain in my head, it felt like my brain was on fire. After some time i started to get burning pain in my mouth and my tinnitus kept getting worse. Then i have had som better periods with the pain, and when pain was better on almost non existent,the tinnitus stayed almost the same level and somtimes lowered a bit. With covid my symptomes got much worse, i was on a dose of steroids at the time and my whole face and hands swelled up like a balloon and i got was red in face and hands.

After this my pain got worse again, also the tinnitus. I was in great pain for a long time but then the pain started to fade a bit and last time i was pain free was a couple of weeks or more this spring, 2023. Then i got worse again and got an infektion i was coughing a lot and got fever. With the infektion i got much worse symptomes, worse tinnitus and worse.

My symptomes gets triggered by talking and whispering, swallowing and from my jaw i belive. I have great issues with my jaw, its popping very badly. And i belive its out of position. Ive been talking a lot lately because i was forced to in meetings and by phone. This has made my pain and tinnitus CATASTROPHIC.

A couple of months ago, in october 2023 i started to get pain in my neck and base of the scull, and side of my head, around my right eye and in my nose worse on right side. Its absolutely debilitating. Its the worst pain ive ever felt. Im suffering so bad!

I recently got a CT scan without contrast and i could measure styolids to 3,6 and 3,4 cm. Bilateral. They also looked pretty thick. I could also see an enlonged bone called hamulus.

Im desperate for relief NOW. Its extremely urgent as im suffering so bad. Im bound to my bed and shaking from pain.

I will book a zoom call with a doctor in another country very soon, i also send him some pictures.

Can someone please help me???

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Welcome to the forum Maria. I am so terribly sorry for the significant amount of suffering you have been through And currently going through. Unfortunately, I don’t know anything about your healthcare system there but here in the states, certainly shaking in pain in your bed would be a reason to go to the emergency room. Although it sounds like you’ve been given most drugs out there and and they are not helping. So I’m not sure quite what to say about that. I’m not knowledgeable about it unfortunately, but I think you should go if you can. And take your CT scans with you.

If the doctors and clinicians there are like they are here most are not aware of this condition and the types of problems. It causes for us. What I would do in your situation is take the CT scan explain to them the nerve related symptoms that you’re having which of this point, I would go with the most painful and then top down to the top three or four. I think they begin to fade out when we have a really long list of issues even though they’re valid.

You do have elongated styloids and as you said they are thick. As you probably have seen a number of cranial, nerves can be impacted by the styloids, they can affect your digestive system , your facial pain, neck, jaw,… Many areas of pain and all at once as you might be seeing or having.

The one thing I’m not sure I saw listed in your meds and I’m on my phone so I can’t go back and look quite easily, but is is whether you’ve had steroids. And with the significant pain that you’re in a dose pack of steroids might help tamp down the inflammation that is potentially adding to your current situation.

The two drugs I am familiar with for nerve pain as they have helped me are gabapentin and lidocaine patches. Both have been incredibly effective for my nerve pain. Gabapentin apparently you may need to take a high dose to get the relief. For example, I Took 300 mg three times a day and would use a lidocaine patches on the back of my neck, and on my jaw, and on the area where my styloid was. I was also taking 600 mg ibuprofen three times a day to reduce inflammation. Both gabapentin and ibuprofen need to be taken with food and water.

The doctors list has these doctors in Sweden…
Sweden:
•Dr Mats Lidegran, Stockholm Karolinska Universitetssjukhus
•Dr Jakob Enerdal, Stockholm Karolinska Universitetssjukhus- does intraoral surgery.
•Dr Gyula Keliger, Universitetssjukhus i Linköping
•Crina Unguras - Universitetssjukhus i Linköping
•Tomas Ekberg - Akademiska Sjukhuset i Uppsala
•Johan Nilsson - Skånes Universitetssjukhus i Lund

I tried to look up lidocaine patches in Sweden, and I did not get reliable information. If you have someone who can get those for you… Here in the states, they sell them over-the-counter at a 4% solution, and the prescription patches are 5%. I would get the patches and some paper tape as the adhesive does not stick well.

I would take the maximum dose of ibuprofen to reduce the inflammation . I believe here it says 3200 mg is maximum for a day and take it around the clock (800 4 times a day). I would see if your regular doctor will prescribe a steroid dose pack. And I would hope some of the nerve meds would help you, but I don’t know what to say about that since you did not have a good response. As always on here, we are not doctors, I’m just giving you advice based on what has worked for me. And so hopeful that you will get some relief until you can get those styloids removed.

(Y’all, please forgive the typos… I find this impossible to edit from my phone… Will fix tomorrow)

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Hi @Maria87 - I am also very sorry to read about all your symptoms. Elongated styloids can irritate the vagus nerve which controls many body functions including bladder & bowels. It’s unlikely, but possible your vagus nerve is so irritated at the top end (by your skull) that it’s affecting your lower body functions, but truly those problems sound like they are a separate problem.

Good catch seeing that the pterygoid hamulus in the roof of your mouth is elongated. The same type of surgeon (often an otolaryngologist i.e. ENT doctor) that shortens the styloids should also be able to shave that bone back during the same surgery. We have a very small number of members who’ve been diagnosed w/ an elongated pterygoid hamulus bone as well as elongated styloids.

It also looks in your images that you may have some stylohyoid ligament calcification on the lesser horns of your hyoid bone. These may or may not be causing problems but for certain your styloids are.

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@Leah has given you some very good advice. I hope you’re able to get knowledgeable medical help very soon!! :pray:

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Thank you for your response!
I cantvtake any more medications due to worsening of my tinnitus. Its an ototoxic effect and my ears are very fragile.

I tried steroids and once i thought it helped.

I asked for it many times but my doctors says they cant prescribe it or anything bevause they dont know what to describe it for. I tried to explain what can be wrong. I even wrote papers for the doctors to read with a lot of research and possible xo factors for my suffering, but they did not even want to read it.

I was sent to an ENT and he sen me to a CT scan, without contrast. I wanted contrast to see more but i got denied.

The CT scan did show styloid processes and more but the radiologists wrote “no eagles syndrome, in my medical record” , and that led my doctor to drop me off. I cant even get a refarral. I asked for it, i even begged for it. In sweden we cant go to specialists by our own :frowning: im stuck, and my symptomes is getting worse and worse. I dont know what to do anymore. The tinnitus and pain is my worst and these sre triggering each other to unlivable levels.

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Thank you for your response! :pray:
Will you please read what ibjust wrote back to Lea? :pray:

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Regarding ototoxic effects…oh my word… this is something I didn’t know about. Am looking up (((.

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I’m so sorry that you’re in so much pain, it sounds awful! I agree with the others that your styloids look large and angled enough to be causing symptoms, and it’s hard to know what to suggest to help you move forward- we do often suggest members print out research articles & take to show doctors but you’ve obviously tried that!
We’re not familiar with the Swedish system, but is it possible to ask for your CT scan to be re-evaulated? Otherwise if you can afford to, some members have sent their scans to Kjetil Larsen- he’s written numerous research articles about biomechanics, IJV stenosis etc and has helped several members with interpreting their scans. Appts are only available online currently:
Home - MSK Neurology
If you could get another opinion on your scans, maybe your doctor would listen to you?
The only other thing I can suggest is that you see someone about your jaw issues, we’ve found that quite a few members have had Temporomandibular joint disorder (TMJD) as well as ES, it may be that you have that too. I don’t know whether you’d be able to see a dentist who might refer you, & then you could get the pterygoid hamulus bone looked at too?
Sending you a hug :hugs:

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Yes, i wrote a letter to my doctor a said that i wanted others to look at my scan or that the radiologists should look at the iamges again and measure the styolids. I got no response so far.

He dienied me to send them to someone else forca second opinion and told me everyone has styloids and that there are no experts on Eagle’s syndrom.
I got so angry and sad :frowning:

I also went to the dentist andd she knew nothing about eagles and she heard my jaw pop and i told her everything about my synonymes but she did not refarr me, she said i have to talk to my primar doctor. And go from there. And my primar doctor sends me to the ENT and ENT sends me to jaw physhic.
I said id rather go to a neurologist that focus on the head and nech area, and to a jaw surgeon, but i got denied.

:frowning:
My tinnitus and ear pain keeps getting worse and i wont make it much longer if i cant get relief.

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Grasping at straws here, but found this interesting. Long/short is he is an ENT surgeon who had tinnitus and used distraction to ‘train’ his brain to ignore the signals. I have no clue how this might play into your situation… but would encourage you to listen and read through the comments. Maybe ( :crossed_fingers: :crossed_fingers: :crossed_fingers:) there is something here.

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This is also interesting and goes along with above Dr. regarding masking the sound and distracting the brain. Again comment section interesting.

When you can, tell me more about your ear pain.

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@Maria87 - Here is a link to a post that has links to independent companies that will give a second opinion on scans. I believe the companies are all in the US, & there is a significant charge for getting a second opinion. You could contact them to check on price & see if they could help you.

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Thank you so much for the advice, i will look into that.
I will also book an appointment with Dr Nils Heim, i send him a mejl where i described my symptomes and send him my CT scan images via Dropbox.

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I tried that rout :frowning:
Doing that made me worse and worse. Noises make my tinnitusen worse and the pain worse.

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The ear pain is like burning fire. And like someone is pouring acid deep into my ears. And i cannot evcen touch my ear canals, its very painful.
Sometimes the pain is like a knife into my ears. The worse the pain goes, the worse the tinnitus.

Ive had som better periods but now uts so bad.

I csnnot even whisper, my pain and tinnitus gets worse if i do. Its never been THIS bad :frowning:

Its torture. A living hell.

The pain radiated to my throat, sometimes back of my toung, neck and back of mt head, mostly my scull base.

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All of those symptoms sound like nerve pain. Have you tried icing your neck? We recommend buying 2-3 small gel ice packs at your local pharmacy & freezing them then ice your neck for 15 min on & at least 45 min off. Put a thin towel or washcloth between the ice pack & your skin. If ice doesn’t help, you can try heat or you can alternate ice with heat.

Try sleeping & resting with your head elevated. A wedge shaped pillow is helpful for head wlevation but you can stack bed pillows & get the same effect. Just make sure you create a gradual slope so your upper back, shoulder & neck are supported.

I sympathize with your tinnitus @Maria87. I have terrible tinnitus in one ear & occasional pain in the ear canal. I’ve had the tinnitus for 8 yrs so am often able to tune it out except when my surroundings are quiet, then I really hear it.

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I tried everything for the tinnitus and pain, nothing helps. My tinnitus cant be masked. Its 150 decibels at least, i would hear it in a thunderstorm and tornado. My whole head is screaming extremely loudly. I dont even know gow in still alive. My tinnitus gets worse and worse over tine, it stsrted mild 3 years ago. As soon as the pain set in my tinnitus kept worsening non stop… the pain and tinnitus goes hand in hand. And noises are bad for my ears so i could never mask it, i have to isolate in my apartment. Cant stsp outside my door.
I get worse from whispering now since a week, never veen that bad before. I got this bad when my pain in neck, head stsrted recently… came out of no where. I had better peripds but never as good as i could go outside on daytime.

I dont know whats happening and whats the root cause is… im desperate for relief… i have to stop the worsebings or i wil not be able to survive… :frowning:

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I am very sorry for your pain & suffering. I am praying for you to find a solution very soon. :pray:t3:

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My only hope is that styloids has an effect by compressing nerves, its wierd inget psin anf worse tinnitus by talking and whispering. I wish a surgery would help. Butvi believe uts permanenta damage and thhatvits to lste to get relief through surgery. Ive tested everything else, everything under the sun, even meds and trt. Nothing helps… :frowning: i believevthe more my styloids grrow and the worse my jaw gets, its makung my symptomes worse.

I often tolerate some other noises nut not tslking, talking and whispering would mostly make my tinnitus worse… i domt understand

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If Swedish medics won’t help you have you considered seeing medics in Europe on doctors list? They may be more knowledgable & helpful?

I note Dr Hepworth in US uses Plavix to help his patients pre op but he does mention aspirin in webinar (anticoagulation I think). May be worth trying to see if gives some temp relief? D

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It does sound very strange, as well as awful for you…praying that you can get some help & sending you a hug :hugs: :pray: