I'm really struggling - Been off work over two months with numerous symptoms. What do I do next?

Hello Everyone,

I'm just looking for some ideas / support on what I should do next. To set the scene I've been off work just over two months now with seemingly never ending and ever changing symptoms and I'm at my wits end.

I've long suffered from left sided headaches and pain / pressure behind my left eye (every single hour, of every single day for approximately four years). I haven't ever been too worried about it, the pain is usually a dull ache (3/10 on the pain scale) occasionally the pain spikes, especially around the back of the eye (my eye sometimes feels like it is going to pop) but again I can live with this.

After a few months when it originally started, I saw my local GP who referred me to a Neuro, who did a CT (which was all clear) and said it was just down to migraines. I also went to an optician who checked my eye pressure amongst other things. I have never been able to identify any triggers (made harder by the fact the pain is there 99% of the time) as to what makes it worse or better. The only thing that I've ever noticed is it's worse with a lack of sleep, although that's surely the same for most ailments. I can constantly feel my left side of my brain, its daft things like if my partner scratches my back in bed, my left side of my head will tingle or if I shake my head from left to right I’ll get a pain in my left side of my head and cheek.

One last note, throughout this I've also noticed I wake up with a blocked / runny nose basically every morning. It usually disappears by the afternoon at its worse. It’s been annoying over the years but has never been debilitating and is something I just figured I would always have and would have to live with. I was told by an ENT at the time I had a deviated septum, but was told this could not cause my head / eye pain and would only be the cause of the runny nose in the morning. I was offered to have surgery, but he warned me that it could make it worse and I could lose my sense of smell (something I thought wasn’t worth risking if it was only causing my runny nose and not related to my head / eye pain).

Now comes the main problem - 

Around two months ago I went to a family BBQ, I had obviously a lot of food and a few alcoholic drinks (approximately 10 units). The next morning I woke up to get ready to go to work and felt really unsteady / dizzy on my feet, basically I still felt drunk. I work around 55 miles away but luckily my partner also works around the corner from me so I asked her to drive as I thought I must have had more to drink than I first thought. I felt sick to my stomach during the journey to work which continued whilst at work. It came to about 2:00 PM and after being sick at work, I had to go home. At this point I thought it must have been a reaction to the alcohol (I don’t really drink) or a dodgy BBQ burger (food poisoning). That night I had no appetite and nausea worse than anything I had ever felt before. The next day I went to work but immediately realised once I was there that I was too sick to work.

On the drive home from work I also noticed I had tinnitus in my left ear (I again thought this might be unrelated due to earwax as a few days before the family BBQ I woke up one morning with my ear completely blocked and had booked in for it to be syringed (I subsequently had this syringed at the doctors and it made no difference).

I went to A&E later that day as I felt that ill and I was told it was something called Labyrinthitis. I was given a week course of antibiotics, some tablets to help stop the nausea and also given some SERC (Betahistine) I presume to help with the dizziness / lightheaded feelings.

Over the next two weeks, I could barely get out of bed, I was fatigued, woke up most mornings with chills and shakes, extreme nausea (very rarely sick but constantly felt like I needed to be), diarrhea / floating stools (I had never had these before) and a complete loss of appetite. I was dubious regarding the Labyrinthitis diagnoses as at this point, my main problems were nausea, abdominal pain and diarrhea. All of this was more prominent in the morning and did get better as the day went on but every morning the same as the day before.

I went back to my GP and pleaded for help, they took some more tests (blood, urine and stool) and predominantly focused on my nausea and diarrhea symptoms. I was still having head issues (head pressure, occasional brain spasms) but I think they were less noticeable due to feeling so nauseas all the time. As previously mentioned I’d also began to have some left upper quadrant discomfort and a lot of gas (not flatulence, just bubbling in my upper left quadrant (again I know this is normal for a lot of people, but isn't something I've EVER had)).

All the blood tests came back normal, apart from a slightly low B12 (given Cyanocobalamin tablets to take), slightly low vitamin D and high Serreum Ferritin. I was told that this most likely indicated some kind of virus that caused inflammation but the GP told me she wasn't an expert and would have to refer me to a GI.

As the weeks went by my stomach issues and nausea began to subside, it's still not perfect but from where I was 7-8 weeks ago, it's worlds apart. My main problem now is my head. My tinnitus is still present, predominately left sided, constant head pressure and ears feel blocked (haven’t been able to pop them in about 6 weeks) I'm also still having bouts of dizziness / light-headedness. This is the symptom that is most concerning, it's not like true dizziness, I'm not in the realm of falling over, it’s just a strange sensation, it only lasts a 1-2 seconds and maybe happens 10 times an hour or so (more prominent when I'm walking or trying to concentrate on something. I've also noticed it happens more often when I'm talking to people or focusing on one point with my eyes. When I talk with a deep voice, I can literally feel my brain / inner ear vibrating.  If I had to describe it, it’s almost like a split second seizure that I feel in my left side of my brain.

Summary of symptoms;

·         Left sided split second brain spasms

·         Left sided headache / eye pain

·         Nausea (has improved)

·         Ear blocked feeling

·         Tinnitus (extremely high pitched, constant over the duration, 15,000hz)

·         Loss of appetite (has improved)

·         Floating stools (has since become more normalised)

·         High Serrum Ferritin (I have been told this has normalised)

·         Low B12 (The GP said it was only slightly below normal levels so don’t think this is a factor)

·         Low Vitamin D (I was told it was only slightly below normal)

·         Upper left quadrant pain, bloating and gas

Summary of Tests

·         CT Head

·         MRI Head

·         CT Abdominal

·         Gastroscopy

·         Multiple Blood tests (I’m not sure what for apart from H.Pylori and Coeliac Disease)

·         Stool / Urine Tests

I know I sound crazy I just don't know what to do. I really want / need to get back to work it just feels impossible at the moment because of my head, not only do I feel unsafe driving over 100 miles a day, I find it impossible to concentrate with the ongoing brain spasms and tinnitus. 

Is this likely to be some strange virus and I just need to sit it out or should I be pushing my GP to do some alternative testing? I’m usually fit and healthy and didn’t have any kind of sickness (other than a blocked ear) prior to all of this.

I guess autoimmune diseases do run in my family. My dad’s type 1 Diabetic and has Coeliac disease and my mum has Rheumatoid arthritis but I haven’t been able to find any autoimmune disorder that could fit my symptoms?

What could it be!? I’m pretty desperate, I think feeling this bad and not having a diagnosis is making it a hundred times worse. I have been referred to an ENT for further testing but I’ve no idea when this will be, it could be months and my sick pay at work has already ended.

Thank you for taking the time to read this (I know it’s a very long winded, probably poorly explained discussion) but any help is appreciated.

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