Hi everyone , my name is Sofia and I’ m 24. After 4 years of weird and very very painful sensations in my head , I got the diagnosis of bacterial encephalopathy and I will start the treatment next week. My symptoms are VERY WEIRD , so I don’ t know if they are all caused by this strong brain inflammation or if they are psychosomatic.. the problem is that, after 4 years of psychotherapy, none has been able to help me … AT ALL!! Actually, my symptoms are getting worse and worse .. Basically what I have is constant HEAVY HEAD. My head is so heavy that I need to tilt it forward all the time .. except for when I have anxiety. It’ s so heavy that I can’t study, see my friends , travel etc.. I feel “upside down”.. basically I feel relief just when I lay down on a couch or Bed like a bat.. with my head on the floor. I thought it was a blood flow problem , but they checked my veins in my neck and everything seemed normal. Can the brain inflammation cause this constant need to put my head down ?? Or can it cause head nerve pain ? When I’ m in that position I feel an INSTANT relief!! I also have brain fog and brain fatigue .. but these 2 are common of w encephalitis I know .The weirdest thing is that I have a huge anxiety in my belly , and when I have it I don’t have heavy head and strong burning sensation in my head (Head on fire ).. and when I have this head symptoms Then I don’t have the anxiety in my belly. Can the encephalitis cause this switch between anxiety and headaches- heavyness of my head??? It’s so weird! It seems something psychological , but psychotherapists aren’t helping me at all. If you need more details I can tell you more!!
it all stated after I smoked an e pot (too much thc, which I was not used to) 4 years ago. This is the reason why I thought my symptoms were psychosomatic.. but Now I have this question: can thc or traumas increase a bacterial brain inflammation???
I can’t live like this anymore.. It’s a pure nightmare! Sofy Inviato da iPhone
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Hey, Sofia. Sorry to hear about your debilitating symptoms. I’ve learned that anything goes for encephalitis; each case is different, depending on individual factors and the areas of the brain affected. But, yes, encephalitis can cause anxiety, heaviness, headache, nerve pain, etc. I don’t know if that’s what you have, but I do wonder if you have been tested for neuronal autoantibodies? Maybe autoimmune encephalitis should be considered by your doctors:
I’m skeptical of the bacterial explanation, mainly because four years seems way too long for that disease course, but I’m no expert!
I got sick at age 24, so I can relate to you in that way. It’s something else entirely to lose your old life and youth and watch peers live fully and happily. It sucks, but life gets hard for everyone eventually; no need to compare suffering.
thank you so so much for your comment!!! No, I haven’ t tested it yet! I will do it because doctors here (I’ m Italian) tell you “it ‘ s probably psychosomatic” when they have no idea of what you have. So superficial too often …
Hahaha I promise it is not just Italy. Countless doctors have been baffled by my case also. I was misdiagnosed multiple times and nearly died during the delay in treatment and hospitalization. At first, they thought I had COVID. Nope. Then meth overdose. Definitely not. Then sepsis and meningitis. Yes, but incomplete diagnosis; they missed the most important bit: brainstem encephalitis.
Two years later, plenty of practitioners think I’m exaggerating or faking my movement disorder. (Just talked about that in my recent post called NO END IN SIGHT, if you’re interested)
Honestly, my family and I have had to fight like hell to get the care I’ve needed. Keep fighting. ♥️
Some days are better than others, but, overall, my life is very difficult. Sometimes I am barely existing, but I still (eventually) find peace and gratitude in this life. Thanks for asking! I hope the diagnostic journey improves for you.
Hello Sofy, Welcome to the forum, I'm sorry to hear of your situation it sounds very difficult to deal with. I have Auto Immune Encephalitis and Hashimoto's Thyroiditis Encephalopathy plus osteoporosis, compressed fractures of several vertebrae, PTSD and anxiety.
It took a while to find a diagnosis for each of these conditions and getting referred to the appropriate experts in each field was crucial to finding the root causes and then to find the right answers. You have to be prepared to go down a few blind alleys.
X rays and scans are expensive so tend to be measured out with reluctance or caution. I had several Xrays on my wrist recently only to find no fractures and just a sprain. I have a better splint on my wrist now and just need to avoid heavy lifting and flexing for a while.
I'm only saying this to give you an idea of how long it can take to get to the right answers. From your description I'd suggest you may have a joint/nerve problem in you neck which would explain the relief you get when upside down and the feelings of heaviness in your head. An osteopath or chiropractor may be a good step to take to get a new/different perspective.
Your digestive problem could be anxiety related or a physical condition such as an ulcer, food allergy, Crohn's disease and so on. It took about a year before I was diagnosed with Helicobacter Pylori as a cause of my digestive problems. Once this was settled I could them move on to discovering that I had food intolerance. Ha ha, what a run around.
If you had access to a dozen specialists in each field you might get somewhere but as you have found out getting a correct diagnosis is an uphill struggle. One factor I have realised is that medics don't like to be seen to fail so can refer you somewhere just to save face. There is a strong hierarchy system in medicine and you unfortunately are pretty near the bottom.
If you type your symptoms into Google you will get an infinite number of results and picking the right answers is pretty much pot luck. With research and persistence you may narrow things down. The drawback is that medics don't like you poking around in their particular field.
When I mentioned spinal stenosis as a possible cause of my back pain my pain specialist had a pretty frosty response. All she wanted to do was reduce my morphine, she even dismissed massage: plus she seemed to harbour a dislike for men in general.....
I realised that she had fitted me into the category of the endless procession of people faking back pain to get a lifetime's supply of free morphine on the NHS. Medics come across a lot of fakers hoping for bed and breakfast for a while and some free opiates - or just seeking attention. The medics will have taken a dim view of your use of an e-joint - any drug use is a big no-no. Choose your friends more carefully. Luckily you haven't fallen prey to addiction and overdose etc. In the US 100,000 people died of Fentanyl last year - more than the total casualties in Vietnam.
In my last ward I came across overweight smokers with desperate lung conditions and no intention of giving up smoking, starting to exercise or improving their diet. Pot bellies, a phlegmy cough and inactivity were now their identity and they were stuck. As usual I was back on my feet and away whilst they were laid in bed talking football and waiting for a fresh cup of tea and some biscuits - what could be nicer?
From a medics point of view they were a lost cause. Luckily it was a teaching hospital so they were useful as specimens and teaching aids. It was a tragi-comedy - but there you go.
Your previous history - physical injuries and conditions, plus emotional and psychological experiences all contribute in some way or degree to how you are now. They form a tangle puzzle and in the end you may be able to make more progress working on these yourself. Becoming an expert on your own condition can help you spot the medics BS, to navigate the 'alternative therapies' and at least understand more of your problem, if not find a solution.
That's probably enough for one day - stay positive (getting on the forum is a big step forward) and keep enjoying the things you like, music, reading etc, avoid too much negativity (e.g. climate news etc,) and keep in mind that you are on the path to recovery.
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