I’ve watched this forum for a short while now. I wanted to introduce myself, tell my story so far and where I’m at now, as well as ask for some advice. Sorry if it’s a little long…
For 15 months now I have had symptoms including, a 24/7 feeling of light pressure in my head (does vary in intensity) a sense of detachment from my body, derealization, dizziness (but no spinning, more a floating sensation). Other side effects I have developed over this time due to my symptoms, include social anxiety (something which is the complete opposite of my usual self) and at one point depression although at the moment I am not as low as I was. My symptoms also get worse with activity such as tennis/football, I am able to go to the gym though.
This all started last summer when I went cliff jumping (about 10 meters) in the south of France. I only did two jumps and landed perfectly straight. Later that evening I started to become ill, feeling unwell, diarrhea and a headache. Ever since then, I have had the symptoms as previously listed.
About three weeks afterwards, I went to a hospital and had a scan where I was told that I had an infection of the sphenoid sinus in the middle of the head. I took a two week course or antibiotics and felt perfectly normal again. Once I stopped the antibiotics however, the symptoms returned. I went on to have a further 3 courses of antibiotics, each time getting rid of my symptoms until I came off them. After going back to the original hospital again, they performed some balance tests and told me that there is nothing wrong with me and that the first scan they did for me was completely normal (even though they first told me otherwise).
I then went to see an ENT who asked for another scan to be done. The radiographer left notes saying I had a foamy build up in the sphenoid sinus (similar to the first scan) but the ENT said that it was nothing and the scan was normal.
I went on to have blood tests which came back normal, see a physiotherapist for pressure point release and had acupuncture therapy. All to no avail.
After seeing a new ENT and telling him about the previously reported sinus infection which I was sure at the time must be the problem, I was put on a 6 week course of antibiotics. This time however, the antibiotics did nothing. A later scan showed everything was completely normal.
This takes us to where I am now. I had a phone consultation with a neurologist who diagnosed me with chronic tension headaches. I found this funny because nothing about my symptoms resemble the usual headaches experienced by many. I have been put on amitriptyline with a few other drugs to try if unsuccessful.
I’ve now been on amitriptyline for 2 months and am also a couple weeks into the ‘heal your headache diet’. Started at 25mg and titrated up every two weeks until on 75mg, my current dosage. The amitriptyline has made me realize that sleep is a massive trigger for me. I’m not usually a good sleeper but have slept like a baby on ami and in turn my symptoms when I wake up are not as bad, while before my head pressure was the first thing I noticed in the mornings. I am pretty sure this is due to sleep rather than the ami as on the few nights I haven’t slept well, the pressure in my head returns with more intensity.
The other drugs lined up by my neurologist are propranolol, topiramate and nortriptyline.
I’m currently at the point where although there are some benefits due to better sleep on ami, it just isn’t working. I still have all the original symptoms and it’s been two months now. Do you think I should move on to a new drug? I know no one here is a doctor but I really value your thoughts as you all have so much experience dealing with similar things.
If you made it this far, thank you for taking the time to read it