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Unwell for 2 years. Pressure in ears and head. Very fatigued.

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marcuscent
marcuscent

Looking for an opinion on my last 2 years of being ill. I'm 46 years old, male, and in a good state of fitness. I'm not over-weight, have never smoked, and rarely drink.

I've seen numerous doctors and don't seem to be any closer to a diagnosis. I started visiting my GP with what felt like a lingering flu. Early symptoms included being over tired, pressure in ears, and generally not feeling well. I'd been dealing with a very stressful business situation in the 12-18 months before the symptoms started and was advised that I was probably run-down. Each time I went to the doctor they would take a blood test. Over at least 6 tests they would always tell me something different, but it always seemed to be that I had some unknown virus. At times my blood cell count was too many white cells, or too many red cells. The frustration was they could never tell me what was wrong. I had stress tests for my heart, CT scan and MRI. All came back normal. During this period I would sometimes have 2-3 weeks where I felt normal and was able to work and exercise. These periods of good health never lasted. Fast forward to about 6 months ago. My [now new] doctor referred me to an endocrinologist as it was thought there may be a thyroid problem. My first test did indicate that I may be hypothyroid but they didn't want to give me any medication as they thought it wasn't required. I didn't get any better over the next few months with the same symptoms continuing - pressure in my head and ears, fatigued, unable to concentrate etc. At my next visit to the endocrinologist my thyroid function had worsened slightly and I was put on 50mg of euthyroxine. My blood pressure was also fluctuating a lot with periods where it was around 150/104. I was prescribed medication to try and bring this under control. Around 4 weeks ago I was on a trip away from home and started to feel really awful. I felt my head pressure was increasing and when I shut my eyes the only thing I could hear was my heart beating with a pulsing feeling my head. I had frequent hot flushes, dizzy spells, and never ending ear pressure. I was sleeping frequently for hours during the day, but struggling to get a good nights sleep, perhaps due to building anxiety about what was wrong with me. 

Now back home, I went back to the doctor and explained how bad I was feeling. The main symptoms now being extreme fatigue, constant pressure in my ears, and a very strange feeling at the top of my head. I felt on a few occasions that I was going to faint, especially in the morning. I had tried exercising [cycling] one morning, and had to abandon after only a short time. I had also started to feel aches and pains in my legs and back. I explained to the doctor that the main symptoms that were worrying me were the inability to work [tired and no concentration span], the pressure in my head and ears, and the strange pounding sensation from my heart. I was thinking at this time that these may all be connected to being hypothyroid. The doctor ordered a new thyroid function test which came back right in the middle of the normal range. That has scared me as I feel dreadful, and have been pretty much consigned to bed for the last week. When I do get up I feel dizzy. My eyesight has changed. Hard to explain but it's just not feeling normal. I also feel that driving has a different sensation and I don't feel entirely safe. I still have episodes of feeling like I will faint, but never do. My doctor had asked me to take Zoloft [as she felt I was over anxious]. I didn't want to take them but did, thinking it would do no harm. The morning after taking it I felt even worse, with the dizzy feelings increased. Even 2 days later I still feel the effects. 

I'm trying to find out what could cause my symptoms and came up with various reports on labyrinthitis. As this seems to be a viral problem that can cause the feeling of ear fullness it seems to be a possibility. It's all I've come up now that it doesn't look thyroid is the source of the problem. Right now, I'm in the worst health I've been in years. I can't work, exercise and need to sleep 4-5 hours during the day. I have constant ear pressure, pressure in my head, dizziness, lack of energy, and muscle pain. Can anyone suggest what this could be. It's been 2 years now and I just seem to get worse. Writing this from bed as I don't seem to have the energy to stand up. 

 

2 likes, 115 replies

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  • pistal666
    pistal666 marcuscent

    Edited

    Hi Marcuscent, Alot of what you describe sounds alot like M.E. For various reasons, I am unable to post a link here, but will pm you to a site that has loads of helpful information. A Friend of mine is suffering from this illness for the past few Years. It is hard to diagnose, and could be a reason to why they have not picked it up yet. I hope you get better and let us know how you are getting on. AL
    • dudu75
      dudu75 pistal666

      Posted

      Hi can you pls share what you have sent to Marcusent about his case pressured ears and fatigue
    • jodi30028
      jodi30028 pistal666

      Posted

      Can you please tell me what M.E. Is? I’m having the same problems . I’m habibg the same problems as marcuscent. I can’t take this any longer with this terrible pressure !!! 
    • Shel1975
      Shel1975 pistal666

      Posted

      Hello. Could you please send me the information as well? I have been dealing w the same illness for 4 years. Have seen 2 ENTS. Had a cat scan done. Ears feel horribly blocked and a fullness that worsens sometimes so bad, it feels as if my head wants to explode. Fatigued all the time. The dizziness is totally taking over my life. The fear of driving, or even taking a shower,... and much more is just debilitating. Have tried different medications thinking it was allergies, but no relief. 
    • brenda76136
      brenda76136 Shel1975

      Posted

      Please see a lyme literate medical doctor. I have this same thing. Was debilitated for years. This sounds like chronic Lyme disease.  Primary care won’t do you any good. You need an advanced test through a lyme doctor. 
    • Chose
      Chose Shel1975

      Posted

      I've been dealing with the same issues for almost 4 year's, I've had MRI, mra, cts, ent, vestibular therapist, blood specialist, eye doctors, neurologist, don't know who else to see.

    • Chose
      Chose Shel1975

      Edited

      I've had the same problem for almost 4 year's, I finally got a diagnosis yesterday. I have jaw joint dysfunction, after years of MRI, ct scans, blood specialist, vestibular therapist, Ents, neurologist. I'm so happy I finally know what is wrong with me. My ENT suggested my dentist check for jaw joint dysfunction, symptoms are dizziness, headaches, full ears, clicking, popping in ears, disorientation, confusion, cloudy, tired. I'm having teeth pulled, once that heals, I start treatment for the dysfunction.

    • sarah73523
      sarah73523 pistal666

      Posted

      What is M.E? Ive been dying from fatigue and painful earfullnes for over 10 years and no one can help me

  • kate2127
    kate2127 marcuscent

    Edited

    Hi there, Your post sounds so familiar with my experience, I have trawled through these sites for the past 18 months and never replied, I guess it's because I've been looking for answers, so here it goes...

    approx 18 months ago I started with quite severe dizzy spells, nausea and blocked ears that have not cleared since, the most dilbilitaing symptom of all is the head fog, it is now constant, I wake daily and its there as soon as I open my eyes and it remains all day till I go to bed that night. It stops me functioning, I struggle to work, look after my children, run a home and look after myself, it has taken over my life.

    Prior to my symptoms starting I was fit and healthy, I would think nothing of putting on my trainers and running or cycling to train for a triathlon or half marathon and now I can barely run a mile. 

    I am fatigued all the time, can't concentrate or remember things and I can't recall any sort term memory information. My whole body aches and I feel generally unwell.

    i have seen many doctors and health professionals including neurologists, endocrinologist, ent, nutritionlist, and many alternative therapists searching for answers as to how my health can change direction the way it did.

    I have also had countless amounts of blood tests, MRI,  EEG, for everything possible and all reports come back normal, apart from low cortisol on one occasion, but this was repeated and came back within low end of normal range. Prior to my symptoms startingi had a nasty bout of the flu, followed by a sinus infection, due to the dizzy spells and blocked ears the doctors suggested labyrinthitis in the begining and told me it would clear up in a few weeks, well it didn't and here I am 18 months down the line feeling worse than ever.

    i also feel like my depth and distance perception has changed and my vision has altered and can sometimes be blurry when my head is at its worse, which is every day. I also feel like I'm not 'present' sometimes. If I'm driving my car, I don't feel like I'm there!! It's so weird to try and explain. 

    I just want to sleep all the time and I can never get up in the mornings, even after 10 hours sleep...

    The details above are just a snap shot of where I'm at with things, I've a second referral to a neurologist for a second opinion and I am now waiting for a further MRI on my brain. I just want my life back and I'm really keen to hear how you are getting on since your last post, a few months ago. Kind regards K 

    • lorraine15646
      lorraine15646 kate2127

      Edited

      I have the same issues with the visual problems .its so unreal..Nothing could have prepared me for this..even being told stories like "menopause" or anxiety..its not that...its a brain or balance problem that will not go away..i am terrified to drive incase i verge off the road..Feels like a permanent flu..or brain disease.

      All the other symptoms you have ,,,I have. I do eye exercises to stop the falling sensation..I have had the most advanced doctors in Stanford hospital in Silicon Valley help me..and nothing!! Muscle relaxers do help!!! (To take the heavy feeling off my head.) Migraine symptoms are similar.(without pain).

    • pakpimp786
      pakpimp786 kate2127

      Posted

      did u ever find a solution for this ? im struggling with this for 2 years also. Strange presssure in ears abd head. vision fewling strange. fatigued and foggy.
    • joanna28011
      joanna28011 lorraine15646

      Posted

      Maybe it would be good to do x ray of neck?

      I started to have similar problem.Started with ear infection , I got tinnitus also.

      4 days ago I lost balance and felt like vomiting and had seveiere headache.

      The ENT doctor said that it has nothing to do with ears but my tinnitus is worst now.I will be going to GP now and wonder what he will say.

    • dudu75
      dudu75 joanna28011

      Posted

      Thanks joanna for your response. I dont have ear ringing. But yes i have neck problem and did mri and doc said it is fine just avoid wrong postures while reading my laptop. I also had infection started two years back. So i still have pressure or glued ear it os by far better than before..but my doc said it is prob due to my acid reflux which i do have. I am in herbal medication now like DLPA to minimize anxiety and stress...
    • Starkcher
      Starkcher joanna28011

      Posted

      Hi joanna28011,

      Can I ask you how long you had the clogged ears and stuffy head after your ear infection and what course of treatment they gave you. I had bronchitis 2 weeks ago first round and a half of Z-pack Doctor switched me to another. I feel better accept I’m left with the fullness in my ears and head I can’t stand it. They gave me a steroid which did nothing but put my sugar to about 250 . Now I’m just sitting saying to myself all the what if’s. Is it gonna turn into Meningitis or maybe something worse. My anxiety is through the roof. Did you try a muscle relaxer? I’m at my wits end.

    • anant93568
      anant93568 kate2127

      Posted

      Hey how are u now ? Pls reply I am having the same condition from 3-4years . Are u well now .pls reply. What can I do
    • dudu75
      dudu75 anant93568

      Posted

      Hi yes much better. Apparently i discovered that my stomach wasnt creating enough acid. Hence what ever food i consume it doesnt get properly digested. When i went to 100s of docs they used to think inhave reflux acidity due to increase of acid so they put me on years on PPis which was doing the opposite. I finally decided to stop them and increased my probiotics intake to 100 billions and started to eat small portions and slowly the bloating and pressure i had started to subside. Funny no ENT doc knew this. My ears were perfect. I also started taking before heavy meals of protien some supplement called betain HCL 500 mg and digestive enzymes to help. Since then i can say i am much much better. So if u r on PPIs try to stop for a bit..u will definitely have heartburns at the beginning but then it will subside. Also eat healthy and lower alcohol intake. Let me know if u ever had re flux
    • trevor4421
      trevor4421 dudu75

      Posted

      i am on PPI's as well and have the exact systems as markuscent. i may have to try this!

    • dudu75
      dudu75 kate2127

      Posted

      Hi Kate,,, how are you feeling now...and how was the results on the second MRI...

    • dudu75
      dudu75 trevor4421

      Posted

      give it min 3 months. I am also on st john wort and did miracles... but becareful you should never take it with any other antidepressants

    • joanna09311
      joanna09311 dudu75

      Posted

      I have suffered with extreme tiredness and bad ear pressure for such a long time now i cant find a cure could you please explain the probiotics that was mentioned i do get heart burn sometimes

    • Winkwink
      Winkwink kate2127

      Edited

      hi did you ever get any answers? i am living with this and am no longer functioning i want my life back so i can take care of my kids

    • marcuscent
      marcuscent pakpimp786

      Posted

      Just revisiting this thread after a few years. I still have the same issues. It's been 6 years now. Latest episode has been for about a month. I still try to exercise daily. Sometimes it makes me feel better, sometimes it doesn't. My energy levels are good during exercise but some days I feel so awful I just have to sleep.

    • Muche
      Muche kate2127

      Posted

      Hi kate2127. I have been dealing with symptoms very similar to yours for more than 4 years. I have made numerous doctor visits to find out that everything was ok. I even ended up taking anti-depressants, but it didn't treat the cause of my ailments. Eventually, I took things into my own hands and became my own doctor, without relying on clinics or hospitals. I have narrowed this condition down to chronic sinus disease (not exactly sure what kind). The symptoms I had was daily present (on and off) back of head pressure around ears (almost headache but not quite), trouble concentrating, memorizing (short term memory), tiredness, sudden needs for sleep, fatigue, irritation to bright light, irritation to louder sounds. What cured me (not completely, still in the process) is a vegetable that anyone can find in their house. ONION!. Here is what you do with it. Cut the onion (the stronger the scent, the better) in rings of 5 millimeter thickness. Usually 3 to 5 rings. Place these rings on a long scarf (long enough that could go around your forehead and be wrapped). The onion rings should be placed on your forehead in the area above eyes. Wrap the scarf with onion before you go to sleep, and repeat this for 3 nights. Repeat more if needed (even during daytime). This has healed my sinuses, and the symptoms I previously had, have been decreased greatly. Also avoid cold and drink and eat warm food. I hope this will help you or anybody else reading it. Good luck.

    • frank52493
      frank52493 joanna28011

      Posted

      hi my problem started in my kneck also did you ever get to the bottom of it ?

    • deborah33532
      deborah33532 kate2127

      Posted

      get a sleep study test if you are not getting oxygen in sleep this could be why you are sleepy. i don't have sleep apnea diagnosis, but i don't get enough oxygen either when I breathe during sleep. I was diagnosed with idiopathic hypersomnia which then leads to excessive daytime sleepiness. i also have hypopituitarism. i was always sleepy, as a little girl i would dilly dally at breakfast and be slow to eat and get ready in the morning. i did not have the energy to move quickly and get going. i was deficient in hormones and also deficient in oxygenated sleep. i did not breathe well when lying on my back, during the sleep study i had in 2016.

    • marcuscent
      marcuscent anant93568

      Edited

      5 years later from posting this... I am no further forward. Usually have 4 to 5 months feeling absolutely fine then always revert back to illness for 2-4 weeks. I am on week 3 of feeling like crap with the same symptoms that started 8 years ago. No doctor has ever been able to tell me what's wrong so I gave up and just deal with it. Usually means close to 0 productivity for 3-4 weeks. Very frustrating.

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