Unwell for 2 years. Pressure in ears and head. Very fatigued.
Posted , 63 users are following.
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
tori79835 marcuscent
Posted
You've nailed the same several "symptoms" that I, too, have been experiencing for the last 6+ years, also to no end of a diagnosis or relief. The only apparent difference is that I've also had a chronic and progressively severe "headache" that is nearly constant.
The key/significant alert to me from your description is that you also have elevated white- and red-blood cell levels. I was initially "diagnosed" (it's not a true diagnosis but rather a term that defines, I suppose) with leukocytosis for the whites and hadn't the elevated reds yet; a couple of years later my blood tests revealed what is called JAK2, an odd configuration of the cells themselves, I suppose is simplest way to put it. My whites remained elevated but now my reds were cancerous: I have Polycythemia vera.
Now ... you'd think that the thickness of my blood--the reds not efficiently bringing oxygen to my head and extremities alongside the overly amped-up whites--would be reason enough for the absolute nature of the fatigue, inability to concentrate (putting it mildly) and the "headaches" (it's more like a severe thrashing), Et. al, however, my hematologist has argued my repeated reasoning with a resounding "No." I've begged all of the docs for a resolution to this (if only a reason for it!)ad nauseum to no avail.
I definitely hope the PV may be ruled out for you--it is extremely rare but think you must be assured that this is the case given the terminal nature of the thing. ("They say" that it's given some twenty-ish years but I've already knocked off six of those and who knows how long it's been sitting there germinating! hehe Despite the utter exhaustion--which you also understand too well--time still does fly.)
Thank you dearly for posting; you've given me fresh optimism and renewed hope that, by your doing so, we may find answers and the possibility of rejoining life, able to again enjoy the most basic activities. I miss my freelance work desperately and my social life even more.
We can't be alone in this and I will stand by your side in search of whatever may be found!
tori79835
Posted
I failed to mention that the head pain began as extreme pressure--it started years ago with a bruised sensation that eventually began tingling and extreme pressure. I used to say that it felt like there was a thick balloon about to explode in my head--from the inside outward. This then ultimately became the pain that I mentioned before and forbid that any other person should experience it.
I, too, had a fierce sense of vertigo which was highly regular; it has subsided in intensity and frequency.
The pressure in my head is now creeping toward my ear canals ... I can sense where it's heading! It was that which I included in this particular search which led me to your post.
I look forward to reading on but, as you will understand, I'm too wiped out from writing this to continue on at this moment. Do take care mean the while that we spend awaiting answers, maruscent!
crystal63800 marcuscent
Posted
Hi could you please send me link also
al64638 marcuscent
Edited
hi just found this blog now and i too suffer with the same conditions. doctor told me i had edt and put me on anti hyst tablets which after 2 years no improvement. has anyone had a true diagnosis yet
frank52493 marcuscent
Posted
i have these exact symptoms and have had sinus problems for at least 15 years and recently a bad ear infection has led to all this , the worst being the extreme fatigue .i will give the onion a go lol as nothing else has really worked
rach120619 marcuscent
Posted
Could be something to do with a nerve, that can cause pressure they should given you a scan, I sympathise with you I've had issues since last year from pressure I ears, pain on my head an nose bleeds but they can't come up with anything so. Most time I think they cba if they can't see it they don't wanna know. I've seen specialist after specialist who looks at me confused on what's wrong then the gp tell me another story. May be worth seeing a ent person private u can get them in opticians who deal with wax removal, sometimes they will listen and give u an opinion not the eye rolling or don't care attitude, ive never found a specialist any good they tell the gp not to give u anything as u don't need it then if they do that the gp will give u absolute nothing, hope u get it sorted
7729179 marcuscent
Posted
hi ... i didn't find exact description in the net as what i read in this post and kate2127 reply ...
i am 25 old man and my life changed 3 years ago after a very strong fever that kept me in bed like a dead ... i just took some paracetamol piles and 2nd or 2rd days the fever disappeared and the mentioned symptoms in this article started that time ...
i stopped my university for 3 years because its really so hard to move my body in the morning regardless how many hours i sleep ... and if i forced my self to stand up and i go to university i find it hard to drive and focus like before .. and cant gather what the teachers saying in classes ... not even 25% compared to my well before ...
many blood test , many mri scans , many doctors , no conclusion yet ...
i was very well and in perfect condition in my first 17 years of my life ...
at 18 i was ok in the morning , but at sunset i feel sleepy and cannot go out home easily ... i can say i was at 90% of my power at morning , and near sunset time my power decreasing to 30% , that made me to refuse a lot of invites in night with friends or some social events at night time only ...
i don't know if this has some relation , i have a very strange numbness in my lower body ,,, when i was school student from 7 years old i found it hard to sit on class`s chair for while , maybe 15 or 20 minute and i feel numbness in my lower body , i asked other students about how they feel on chairs over years i didn't find someone has the same symptom as me ...
another thing im a very light sleeper , so iam using ear plugs daily for years , so i dont know if this has something to do with my ear fullness ...
a few days ago i felt my left ear became lighter so much for seconds and i felt very well and somewhat more balanced , but that last for seconds only and my ear returned to fullness ...
i thought third molar may cause thing to my ears ,,, i removed the last 4th yesterday , didnt see any changes yet ...
thats all for now ... i wish you all be cured soon .... ^^
Decode5960 marcuscent
Posted
I have similar issues.
40s, by all accounts healthy person, normal bp, except I do have GERD. I havent been diagnosed but I think my reflux is caused by whats known as a Hiatal Hernia.
I have been on reflux meds on and off over 5 years. Within the last few months I have had problems mainly in my head. Sinus pressure, ear pressure, tinnitus, pressure on my neck behind my ears, and feeling a bit off balance at times.
I've always wondered if my reflux is the cause. I dont typically get heartburn symptoms but I wonder if acid makes its way up into my ENT area and causes inflammation. Or I think someone else in this thread stated that they think their reflux meds cause it.
One thing I did find by accident is that anti-inflammatories do seem to alleviate the pressure. I dont take NSAIDS because of my GI issues but I had a bottle of Curcumin and decided to take some and I noticed the pressure in my sinuses clear out and same with my ears. Unfortunately the next day it comes back full force and its like someone just hit you in the head with a bat or something.
Very annoying to have to deal with this. Hoping I can find others with similar experiences and understand what is going on because whenever I talk to my doc about stuff they just want to throw more meds at me.
kiki02685 marcuscent
Posted
P.B.C. is a slow disease that will not be a clear diagnosis in blood tests. It requires imaging. It can cause ringing in ears. Autoimmune disease is sometimes difficult to diagnose. Check out the God of Fire. You can upload your D.N.A. report and in less time it takes to buy a cup of coffee, you'll have a clear picture of what road to take. I'm on this journey and it took a very long time to get here.
Titchy72 marcuscent
Posted
hi, did you ever get this resolved. kind of describes me. its not painfull but feel so weak after anything i do.
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