Mostly bedridden with dizziness, head pressure, earaches, hearing loss +

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Apologies if this is a little all-over-the-place, I had to write this over the course of a few days as using my phone for too long makes me feel extremely sick. It's also going to be quite long too, I'm sorry... tried to cut it down as best as I could - there's also a summary at the end if that's easier to follow!

Starting a little more than a year and a half ago, in December 2015, I've been getting very intense dizzy spells, head pressure, nose pain, earaches and hearing loss, along with several other symptoms, that leave me curled up in the fetal position clutching my head and crying a majority of the time. The dizzy spells feel more like I'm in a boat in the middle of a storm, and come along with strange, sudden "falling" sensations. The head pressure is a little more difficult to describe, the best I can do is that it feels like there's a metal thing wrapped as tightly as possible around my head, along with a feeling like my head is filled with water and weights, and pain all around the back of my head that feels like I've been bashed by bricks over and over - it feels bruised and hurts to touch. The pain in my nose is something between being punched from the outside and stung on the inside. The earaches are a stabbing sort of feeling, and come with occasional clear fluid coming out. The hearing loss is worse in my right ear, and I have tinitus, which is worse in my left ear.

A little less than a month after this started, in January 2016, I got Doctor On Call to come to my house as I was afraid to leave my house in case I would faint. He looked into my ears and said that there was fluid that was most likely causing the dizziness. He prescribed me with Stemetil and said that should help with the dizziness, but it didn't. And it still doesn't.

A while later, I got Doctor On Call to come over again. A different guy came this time, he checked me over and said everything was fine - including my ears, no fluid - and left abruptly, saying I need to go out and see a GP.

In about August, I finally left my house for the first time that year to see a new GP. I had a very hard time sitting up in a chair and had to lay down after a short while. She was a very good doctor - she did the usual checks, finding no ear fluid, doing my blood pressure etc. Then, she did my blood pressure again, sitting down first and then again standing - finding that my blood pressure went from normal, to very low, very suddenly. She said this might have something to do with it, and then when I mentioned my eyesight had gotten very poor over the past five years or so, she said that could also have something to do with it, recommending I get glasses. She also did a vertigo test - sit up, then fall into a laying position and quickly turn my head, then sitting up looking in that direction, then look the other way and repeat. I did not experience any trouble with this test.

I got my eyes tested and got glasses in October, however they do not relieve my dizziness at all, and only make my head and nose pain much much worse, so I rarely wear them even though my eyesight is really bad.

This new GP promised to find out what was wrong with me and seemed very dedicated to my case, however, shortly after my second appointment when she referred me for an MRI appointment, she was unfortunately deported from the country. I am now seeing two doctors - the GP who replaced her, and a new doctor who specialises in women's health.

The MRI I got in October came back showing absolutely nothing wrong with my brain. A couple weeks later I had Doctor On Call come over on a particularly bad weekend. He checked my ears and diagnosed me with an ear infection in the right ear, and prescribed antibiotics. This first ear infection cleared up within a week.

I saw a Neurologist in February this year after my GP taking several visits before he would refer me. I had a very bad day that day, needing to walk a few hundred metres from the parking lot to his office, longer than I'd walked since the whole thing started in December 2015. By the time I got to his office with assistance from family, I was very pale and sweating, on the verge of passing out. The doctor only spoke to me for a few minutes before deciding I would be admitted into hospital. I stayed at hospital for a little over a week - I had two more MRIs done, another brain one and one for the ears, as well as a heart scan and a 24 hour heart moniter. All four tests showed nothing wrong. I was also taken on short walks around the hospital to get my strength up as I had been almost completely bedridden and housebound for a year aside from appointments. And that was all that was done, before I was signed out and went back home.

About a week after I went home, I had a very bad day and had to get Doctor On Call in again. He checked my ears and diagnosed me with ear infections in both ears - while I was in hospital I had my ears checked several times and they were totally fine then, not even fluid. I was given antibiotics, however a few weeks later when I went to see the women's health doctor for the first time, she checked my ears and informed me that I still had the ear infections (these would take an extra three rounds of antibiotics to clear up). She also checked my blood pressure and heartrate and told me they were high. I told her that was "normal" for me and I'd had my heart checked and she said that's not normal and needs to be investigated further. I also told her I had a barking cough since not long after the dizziness started and showed her a recording of one of my coughing fits and she referred me to get a chest X-ray the next day. However, I was far too sick to get out of bed the next day and wasn't able to get it done until the end of the week, by that time the women's health doctor had gone on a lengthy holiday.

I did, however, get my results during a visit to the emergency room in June - I had collapsed in the bathroom at 4am and was taken in an ambulance. You guessed it - nothing wrong with the X-ray. Just recently she recommended I get a throat swab to check for whooping cough, which I got last week and will get the results when I see her on Tuesday. I do not think I have whooping cough, for one I have had the injection and for two nobody around me has caught it from me and it is highly contagious. But I do appreciate her being thorough and making suggestions, which is more than I can say for some of the people I have seen.

I had an appointment to see an ENT specialist a few weeks ago. He blew something in my ear and checked them, saying they were perfectly fine - no infections, no fluid, nothing. Then I had a hearing test done, which he says I didn't do well on at all. He then put a camera up my nose and down my throat, saying they were fine too, no sinus infection like one of the Doctors On Call diagnosed me with. He did, however, mention a "slight bend" in my right nostril, though he sort of seemed brushed it off as unimportant, so I don't know what to make of that... He said there wasn't much else to check from there, saying I have had pretty much all the tests done. He referred me for a CT scan of my sinus, but said pretty much every other test has been done for me and he doesn't think there's really anything else that can be done.

I don't know what else to do from here. I still have the CT scan, and a 24 hour blood pressure moniter - but nobody seems to know where to go from there. Like I said, I will also be getting the results of the throat swab on Tuesday, but I'm 99 percent sure I do not have whooping cough, and even if I did it does not explain the pain and dizziness. Please, please, if anyone has any suggestions, what it could be or what other tests I could ask about, please tell me.

Most days I can't even sit up and watch a half hour of television without winding up curled in the fetal position clutching my head - I have seen three movies today, not even movies at the cinema, I'm talking movies on TV and Netflix. Those three movies were watched with multiple long breaks, one took a whole week to fully watch! I have cut down the amount of TV shows I currently watch from almost twenty in 2015 to exactly two now - new season of Doctor Who, and repeats ofMalcolm In The Middle, and I am behind on those, seventeen episodes behind on Malcolm and five episodes behind on Doctor Who. I am at a standstill in my life, unable to go out and attend school, meet people, have a family and a job - I'm bilingual and I have a lot of other skills to offer the world and I dream of using them to open the English speaking world to many non-English films and series they probably haven't even heard of. Yet I can't even sit up to use my own laptop! I am losing touch with most of my friends except for my four closest, as I am unable to hang out - I have not seen any of my friends, not even those four closest, since before this whole thing started in December 2015. Of those four, one has married and I couldn't attend the wedding, and two have children I have not been able to meet. I truly am at the end of my rope, I cannot live like this any more.

To summarise:

The symptoms:

- Dizziness, feels like I'm extremely drunk or in a violently rocking boat. Comes with sudden "falling" sensations.

- Head pressure, feels like a metal rod twisted around my head, feels like head is filled with water and waits and about to burst like an overloaded water balloon.

- Head pain, feels like I've been bashed over the head with a bag of bricks over and over again. It hurts to touch and feels like I have been bruised, however there is no visible bruising.

- Nose pain, feels like I have been punched directly in the nose, also feels like I have been stung from the inside.

- Earaches, feels like somebody keeps jabbing a cold, sharp metal stick in my ear. Clear fluid occasionally comes out.

- Hearing loss and tinitus.

- Barking cough, wheezing. I occasionally cough up blood, not a lot but enough to worry even though I have been told the blood is most likely because of the coughing.

- High and low blood pressure. I forgot to mention that the sitting-and-standing test hasn't shown blood pressure drops since the first time it was tried. Also, blood pressure problems are inconsistent with symptoms, I can be feeling awful with perfect blood pressure and feeling relatively okay with a bad blood pressure reading.

- Poor eyesight. It is rapidly getting worse, I got my glasses in October last year and they are now no longer good enough. Wearing glasses does not help dizziness, and it makes my nose and head hurt a lot.

- Extremely sore eyes.

- "Drop attacks", a new symptom that started in June, where I am standing one second and on the floor the next. I do not think I go unconscious when this happens, and it has only happened three times, but it is extremely concerning.

- Exhaustion, I have to take naps most days.

- Muscle and joint pain, particularly in the legs and back, almost certainly due to being bedridden and curled up and tense in the fetal position so much. (Probably not helpful as the cause is pretty clear but wanted to give every detail just in case.)

- Nausea and stomach pain - had for a very long time, diagnosed as IBS and Cyclic Vomiting Syndrome. I mostly have a handle on these illnesses with medication and diet. (As above, probably not relevant as it is something I have had since childhood and I know what it is and how to treat it but added just in case.)

Tests done, came back with nothing:

- MRIs, two on the brain and one on the ears.

- Heart scan

- 24 hour heart moniter.

- Chest X-ray.

Tests yet to be done:

- CT scan of sinus.

- 24 hour blood pressure moniter.

- Results to whooping cough throat swab.

(I have been told there are no further steps that can be taken other than the above. Would appreciate any suggestions for tests I can have done so I can suggest them to my doctor on Tuesday.)

Diagnosed:

- Occasional "ear fluid".

- Two ear infections, one that took four rounds of antibiotics to get rid of.

- Occasional low or high blood pressure.

- Hearing loss, with no reason for it. Need hearing aids but I do not like the way they feel.

- Poor eyesight with need of glasses, gotten much worse since October last year.

- "Slight bend" in my left nostril, brushed off as unimportant and not the reason why I feel so bad.

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14 Replies

  • Posted

    You mentioned about not doing well with the hearing test, but what were the exact results (loss of hearing in which frequencies)?

    You also mentioned doing the "vertigo tests", with lying down and head turnings.  Were there any findings here, or was this test normal?

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

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    • Posted

      Sorry for taking so long to reply! The specialist actually didn't say much other than I didn't do well. I'm not even sure how badly I did or which ear is worse - he does want me to have another hearing test when I see him next.

      And yes, the vertigo tests results turned out normal.

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    • Posted

      I've just recently found out from an E.R. trip that the hearing loss is at "low frequencies", wasn't told which ear is worse though... I tried to ask a couple of times but was interrupted mid-sentence so I gave up.

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  • Posted

    were you ever treated with steroid injections? Also, are you taking anything to control blood pressure? 
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    • Posted

      Sorry for taking so long to reply! No, I have not been treated with steroid injections. I am not taking anything for the blood pressure - my GP wants me to have the 24 hour blood pressure test first before taking any action. He says if I take something to lower my blood pressure and it's already low, it could make it go far too low and make me pass out, among other things.

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  • Posted

    Two things that I would recommend. 1. You should be seeing a Neurotologist. They deal only with inner ear issues. 2. Look up the symptoms of SCM. This muscle can cause a lot of the symptoms that you are experiencing.

    Unfortunately, most of us have been told the same things by the medical community. We look well but, are far from being. You should also consider migraine as the cause.

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    • Posted

      Sorry for the late reply! Your post was actually the first time I've ever heard of a neurotologist, I don't know why none of the many people I have seen have ever mentioned such a thing, it seems like the obvious next step. Actually, the doctor I saw on Tuesday seemed a little confused when I mentioned a neurotologist, asking if I meant neurologist. I will ask my GP when I see him next and have my fingers crossed I can get a referral from him, unfortunately the women's health doctor cannot organise things like that as she does not have my history.

      I forgot to suggest sternocleidomastoid to her - will remember that when I see my GP, though!

      The doctor suggested a device that's supposed to help with migraines called Cefaly... It's attached by an electrode that you stick on your forehead, and it does a vibrating thing that's supposed to go for 20 minutes. We rented it for almost $300 and... unfortunately it was impossible for me to keep it on for more than 10 minutes. I made the ~super wise~ decision to try it for the first time after two consecutive days of little sleep and in the middle of a Cyclic Vomiting Syndrome attack - I threw up immediately afterwards. I want to try it again in a few days as I am desperate to make it work - we are very tight on money and $300 is a lot to us and I feel utterly horrible that I've made my family spend so much money on it without giving it a proper try.

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  • Posted

    1) See an eye specialist that has a specialized machine to take pics behind the eyes of the optic nerve, that has the capability to visualize and see the pressure of the optic nerve. Have them look for *Papilaedema and a condition known as *Idiopathic Intracranial Hypertension Psuedo Tumor Cerebri.

    Not just any eye Dr or regular Dr can diagnose this. It's rare and very hard to find! Look it up, your story sounds EXACTLY like what I've been through with a child. After a couple years, about 20 plus specialized physicians and every test possible later... They FINALLY found that. It basically is increased pressure in the head from an excessive amount of cerebral spinal fluid in the brain. It mimics all the same exact symptoms of a Brain Tumor but isn't, hence why it doesn't show on a CT/ MRI of the brain. Left untreated it will progress to blindness!

    I've read drs also use *Spinal Taps to more accurately diagnose this condition sometimes also known as IIH (or as I previously mentioned- Idiopathic Intracranial Hypertension/ Psuedo Tumor Cerebri) by measuring the pressure of the cerebral spinal fluid to the brain. Spinal taps can also be used in the treatment too, to effectively drain the fluid off the brain, however it was contra indicated for my child because of another brain condition. So they opted treatment with medications.

    2) Are you on any current meds? Sometimes certain medications can give you horrible side effects or cause symptoms when discontinued or mixed with something else?

    3) Any abnormal blood work? Ever have any spinal tap or MRIs of the spine?

    4) Current Medical/Psychiatric Diagnosies/Medical History? Are you male or female? And would you consider yourself under or overweight? I ask because the condition I mentioned above isn't caused by, but symptoms can get worse with being overweight or from certain medications.

    5) I don't believe your cough is related to all the other symptoms you've mentioned. I think that's probably related to something else.

    6) Possibly see an IMMUNOLOGIST and ask them to run TITERS of your IMMUNITY in your Blood. My child had years of Sinus&Ear Infections, Fluid in the ear, and alot of the same symptoms you mentioned, they were just about to put tubes in the ear until the LAB WORK came back and identified that one of his titers were low, even tho he had had all of his childhood vaccines&was up to date; somehow his body lost the immunity and he had to be revaccinated. The one that was low was specific to a bacteria that causes Ear/Sinus/Respitory Infections. Once he got revaccinated, his multiple Ear/Sinus Infections that often would take rounds of multiple antibiotics to treat, only to come back a few weeks later completely went away!! It sounds like something is off with your IMMUNITY too or that they are missing an AUTO-IMMUNE DISEASE?? That's where your body mistakenly attacks itself.

    7) Always TRUST your gut and body, if you don't get answers from one Dr or test, DON'T GIVE UP or let them make you feel like your crazy because they can't figure it out! It's not always that certain Drs are bad or dumb, sometimes it's just rare conditions people have and it may be outside their scope of practice.

    Keep researching, keep trying New Specialist Physicians, Keep getting different tests done, keep getting 2nd...3rd...50 second opinions if that's what it takes until they finally figure it out and you get BETTER!! But DON'T LOSE HOPE OR GIVE UP...I know it's very frustrating and depressing especially when you already don't feel well I've been there, I understand from both a personal and professional stand point. But I promise you, there is an answer ,explanation, diagnosis and treatment somewhere out there for you! You are already on the right track by being aware of your symptoms and paying attention to your body and reaching out to others to brainstorm for other possibilities, ideas and solutions.

    I wish u thee best of luck...I hope this information HELPS, please keep me updated how it all works out! Thanks

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    • Posted

      Sorry for the late reply! I've come across IIC before, actually! My mum found it online, but when we tried to suggest it to one of the Doctors On Call but I was interrupted and given a lecture on Googling. The women's health doctor I saw on Tuesday was a lot more open to listening to me - I copied your post into a memo to show her - but unfortunately as she isn't my GP she cannot make any referrals like that for me. I'll be suggesting it to my GP when I see him next and I'll let you know how it goes!

      I am currently on a few different medications - of the daily medications, I take 2 Serequel per night for anxiety. Up until recently, I also took Mirtazapine (for depression) also at night, but it's now being changed to Sertialine in the morning. Also up until recently, I took Vitamin D daily, but I have low changed to one per month at a high dose. I still take Vitamin B12, Folic Acid, and Magnesium daily. I also, when needed, take Stemetil for dizziness, Codral for sinus pain and in an attempt to help the head pressure, and very very occasionally Panadeine Forte for head and sinus pain.

      The blood tests have only shown low Vitamin D and Vitamin B12, and Folic Acid was prescribed during my hospital stay, however I have been taking those three for quite a while. The Vitamin B12 deficiency is because I avoid eating meat, though I have been trying to eat more non-meat foods that are a source of Vitamin B12 since the diagnosis. And the Vitamin D deficiency would be because I spend most of my time in bed, in the dark. Other than those deficiencies, every other blood test I have had has been normal. I have not had a Spinal Tap or any MRI of the spine.

      I have been diagnosed with IBS, CVS, depression, anxiety, and the aforementioned Vitamin D, B12, and Folic Acid deficiencies. I am female and currently slightly overweight for my very short height - I did previously lose a lot of weight about six years ago due to CVS, and disordered eating which was brought on by a bad breakup. I gained back some of the weight I lost, and have started very slowly losing the weight again since last year. The doctor changed my depression medication as she said the Mirtazapine has a side effect of weight gain.

      I will suggest that test and seeing an immunologist as well! The women's health doctor mentioned I had a high temperature on Tuesday and had probably caught a virus of some sort, even though I didn't feel much different to the usual. I forgot to mention in my main post that I have also had two infections on my fingers and one infection on a toe, all within the last year. I'm wondering now if immunity might be the cause of that too? Up until the past year or so I have not gotten infections very easy, only two infections of any sort (bladder and tooth) within the decade before this started.

      Thank you so much for your kind words - I have had moments where I've just wanted to give up and stop this exhausting search for answers. Unfortunately when doctors find out I have been diagnosed with depression and anxiety - which was diagnosed as a preteen over a decade ago and caused by bullying, sexual assault and family/friend drama, now my anxiety is mainly due to this illness - they boil the whole thing down to being completely anxiety and it's so hard to explain to them why I disagree - I know my body and I know this isn't anxiety. I once had an ambulance come out at 5am, only to have the guy force me out into a chair in the living room, making me sit up when my head felt like it weighed a thousand kilos, so he could give me a lecture on how this was just anxiety - all of it, the dizziness, head pressure, fast heartbeat, high blood pressure, earraches, even the coughing and wheezing. Unfortunately as soon as most doctors find out I have that anxiety diagnosis they almost immediately give up trying to find anything physical... But I keep hoping that one day I'll find that one doctor who won't give up even once they realise this isn't goint to be an easy quick diagnosis that can be found with a simple MRI. I know they're out there, the GP who had to leave the country was like that, and the women's health doctor seems to want to get to the bottom of this too, it's unfortunate she can't be my GP and therefore doesn't have the power to get me to see specialists, and I can't see her regularly either. I just hope I find the right person soon...

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  • Posted

    I'm feeling much, much worse as the days and weeks and months pass, and at the point where I'm getting really afraid now. I've found fluid leaking from my ears four times in the past two weeks with no infection detected, and my heartrate keeps going higher and higher. I've had three more "drop attacks" since I made this post, and I can't stand up at all any more without feeling like I'm going to faint. I have hot flashes almost every day. I have had a fever at least once a week. My migraines are getting so bad, Panadeine Forte doesn't even help and I can't even think about anything other than the pain. I also have new symptoms: pulsative tinnitus, and pain in my neck and back that are so bad they make me cry. Panadeine Forte does help with the neck and back pain, and my ear pain, so that's why I'm still taking it despite not helping my migraines.

    I don't know what to do - I went to the hospital a couple weeks ago and the second the creepy overly-touchy doctor found out I took medication for anxiety and depression he literally stopped writing down my information and lectured me on how this is all just anxiety. He brought in a psychiatrist and I talked to her privately, and she seemed to agree with ME that while there was obviously anxiety, there was also clearly some physical stuff that she could see going on and that I needed to get my anxiety stuff sorted (reviewing my mediation and seeing a psychiatrist regularly), because then doctors like Dr. Touchy would have to pay attention to the physical stuff. But then Dr. Touchy came back and told me the psychiatrist agreed with HIM that it was just anxiety. I don't know what happened and felt betrayed... if she was lying to me when she said she agreed with me, if she was lying to him just to shut him up, if she changed her mind, if he was lying to me, or just picking what he wanted to hear from her.

    He's called my GP and I think he's convinced him that it's just anxiety and not to take me seriously any more. I don't know what to do... there's no more options for me. I can't suggest tests or any possible illnesses like the ones you guys gave me in the comments because I get harassed about Googling things and they absolutely refuse to test me. I asked about a possible spontanious CSF leak and was told by Dr. Touchy that doesn't happen spontaniously and I couldn't have it without having a serious injury like a car crash. I couldn't even tell him the reason I wondered if it could be that, he groaned and interrupted me with a lot of anger. He didn't believe me when I told him I had ear infections, and when I tried to give him the contact details of the doctors who have diagnosed these infections, he genuinely looked like he was going to throw his notepad at me, he literally had it in a throwing position, and he wouldn't let me even finish speaking. He was such a horrible doctor - and he touched my leg FAR too many times, which made me extremely uncomfortable as a SA survivor. I couldn't tell him he made me uncomfortable, though, as I knew he'd be more certain this was all anxiety caused by my assault which happened over a decade before any symptoms even started.

    I can't go back to hospital. I have called Health Direct twice since my last hospital visit and they have all told me they strongly advise that I call 000. The first person I spoke to was ready to call them FOR me. But I can't be sitting up in a wheelchair for an average eight hours just to be given up on the second I tell them I take anxiety medication. The last visit to the hospital ended with me violently vomiting for over 24 hours just for sitting up for a litttle over fifteen minutes. Dr. Touchy made me feel so bad about seeking help from the E.R. that I won't risk getting that kind of treatment again.

    I don't know what to do. Every day I wake up feeling awful and desperately wishing it could all end. Now that Dr. Touchy has convinced my GP I'm just an anxiety case, he won't listen to me any more. I have tried ringing the Undiagnosed Diseases Program in Western Australia as a desperate last resort, but have been told such a place does not exist despite several articles on it, even coming from the WA health site. They got me on to Genetics in Newcastle, which is not what I was looking for, and I need a referral to go there anyway - which there's no way my GP will give me now. I wish I'd never told anyone about my assault, and that I'd hidden my anxiety and depression and never sought treatment for it. This is what happens in Australia if you ask for help with mental issues - everyone I've ever spoken to with mental issues says they wish they'd never sought help, for a lot of different reasons.

    I really don't know what to do. I think I have to just give up on getting any help and any hope of getting my life back, because I honestly can't think of a single thing that I can do now.

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  • Posted

    Have you found any answers yet?
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  • Posted

    It sound like a spinal leak .it is what I have from an injections cervical to my neck .but you can get a spinal spontaneous fluid leak .you can look it up . There is a doctor in California specialize in spinal leaks .hope it help you .If you need more information let me know .I supposed to see the doctor in California for my leak aug 28 th .
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  • Posted

    Its sound like you have a spinal leak. You can get an spinal leak from steroid injections or it can

    be spontaneous leak. Sometime a mri can find the leak . It is hard to find leaks in your spine . Look up spinal leaks .

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