What is this? Have no life in me. Depressed...constant pain for over two weeks

I started having severe headaches that were ongoing 24/7 (without break) from November to December (possibly early Jan) last year. The pain was intense pressure and along with it throbbing, dizziness, couldn't tolerate moving (crawled at one point), near blackouts, couldn't think, couldn't even use my hands, a "liquid" feeling in my head and endless stroke like symtpoms and scary things. Suddenly it abruptly stopped.

My doctor referred me to get a ct scan.

Suddenly two weeks ago I got it again suddenly. It burns, aches, throbs and goes all over my head. It's much worse than before. The burning is so intense and goes down to my neck. Along with it random twitching or shaking of my body, can't sleep, can't think, sleep no more than about 3 hours, Feel "out of my mind" (like my brain detaches from my head?) feel random loss of feeling, feel mentally impaired (severely), trouble finding words, speaking like a kid at times, feel inner ear pressure, sometimes I get tinnitus, feel like "wires are crossing in my head" and that joyous feeling of liquid around my head again and just intense pressure and one sided or all over pain. No set headache type at all.

It's scary because I can stand and go to the cross the road and not have any care or understanding of risks. I feel in a constant fog of pain and like I'm detached from the world. I do suffer depression and have had it most of my life, but this is entirely different. I feel my personality has changed. I feel like a different person. I have near blackouts and like wires are crossing in myhead which is frightening to experience. I feel sometimes I'm at that point about to lose consciousness.

I had a spinal tap yesterday and results were good. It caused me to have burning rushes up my neck and into my body, twitching (more), tingling, worse headaches, a really intense out of body feeling like I was floating above my body which was scary. The tap was excruciatingly painful and caused scary nerve problems. However I did have laughing gas, a nausea pill of some sort and a codeine tablet with it.

I had the ct scan two days ago of my head and results are good. No pain killer helps.

What could this be? Are my nerves shot? Is it my neck?

I feel lost The spinal tap results say that I had 16cm on opening pressure and it was clear. Know nothing else. He told me about one red blood cell but I'm not sure what that means.

Pain: The headaches typically move all over my head but usually directly on the top of my head growing into the forehead and lower head into the neck. The pain often burns intensely, has a liquid dripping feeling or gets intensely tight and feels like a balloon about to burst

Does anyone have answers?!! My neck? Is it some form of neuralgia? Ex doctor thinks possible migraines.

13 Replies

  • An autoimmune disease frequently missed especially by neurologists is Hughes Syndrome/APS - Sticky Blood, Antiphospholipid Syndrome. Often but not always there are relatives in the family with migraines, miscarriages thyroid or other autoimmune diseases, or early heart attacks or strokes, if this rings any bells, the blood tests are cheap for a GP to do, and I can send more information. I have this. MaryF

  • Hi moonlight, firstly I would like to give you a big hug, I share your pain with you and when I was reading your post I wished only I could be there to give you a hug or that you do indeed have someone beside you to listen to you and understand you.

    Migraines are very debilitating!

    Your description summarises my situation, on top of it I'm getting serious issues at work because of absenteeism and in the process of losing my job.

    My family life is falling apart, I'm a wreck, I hardly can even talk to people any more without crying.

    Depression is certainly a big issue here and it really is caused by not being able to handle pain anymore.

    I think you should be seen by a good neurologist if you aren't yet.

    I'm taking the sibelium and topamax together and I'm celebrating 18 days without a migraine which feels like a miracle!

    I'm having troubles adjusting to the medicine because of the side effects - on both medicine - but the combination definitely works.

    There's a lot of other stuff that I have to take with it to combat the side effects but mostly are natural supplements.

    I'm a female on my 40' s and the neurologist tells me that women that have an history of severe migraines rarely ever have a single migraines after menopause... Something to look forward to 😊

    Look after yourself and feel free to msg every time you need, like I said to you, I'm on the same boat as you....we don't need to sink together 💗

  • I feel for the two of you and wonder what the neurologist was referring to about post menopause freedom from migraine. Possibly 50% of women lose the headache and the other 50% continue on. Mine got measurably worse after menopause. I hope yours disappear!

    A friend's mother who suffered with migraine all her life, suddenly had them disappear when she was 70... I now look forward to that possibility. Blessings to you both.

  • This is a link to a check list of symptoms of B12 deficiency, another possibility that would encompass the symptoms that you describe.


    Unfortunately the test for a b12 deficiency isn't as specific as most GPs think and you can be deficient well into the normal range.

    It is usually the result of a problem absorbing B12 from your food and can take decades to build up into a full blown deficiency - I had 4 decades of depression along with other symptoms before I was finally diagnosed a few years ago. It's treatable - though not necessarily by following the text book.

    If, looking through the symptoms, you think it is a possibility then I'd suggest you join the PAS forum. If you get the test done - ask for the exact results - should also look at folate levels - and post them there if they aren't conclusive.

  • Yes all of that, agreed. I'm taking b12, folic acid, fosforum, potassium and magnesium supplements. Plus serious medication as mentioned before, and yes all of those can lead to depression.

    I know on my particular case it's actually the other way around.

    I am in deep depression indeed caused by the constant pain of the migraines, the social anxiety of predicting a migraine, having to deal with a migraine send sort out the consequences of another migraine int terms of absenteeism at work for example.

    The migraines have destroyed my life completely, I've been a slave of the stupid thing for over 20 years... And every time I think I found the cure, it rebounds and comes back twice worse than before.

    At the moment, I'm afraid of the light, the sun, the food I eat, the drinks. Everything will trigger another migraine and it will be another 3/4 days in bed.

    I am aware that there are different levels... I've been different levels myself, I'm pretty bad right now... It's really debilitating.

  • Thank you for your responses. My mother suffers from neuralgia sometimes and other headaches a lot. Could be in the family. Going to ask my doctor next week for a nerve pain killer.

  • My advice to you is to actually stay away from pain killers as all the nerve pain killers are pain causes.

    Rebound migraines are the worst.

    If you are as bad as you described, you need to be seen and try a few preventive medications, often you'll have to try 1 or 2 before you find the one that works with you.

    Certainly intoxicating yourself with painkillers won't do any good and you'll just eventually end up in a situation where no pain killer will be able to kill the pain.

  • I had the exact experience I was bed-bound for 2 months due to having a sever migraine attack, unfortunately mine never quite went away. Which meant I had to quit my job & have my partner look after me full time as I was unable to move without screaming in pain & vomitting. I suffered 4-6 migraines a week up until only recently when I started having regular Botox, asprin & using a circulation machine. I have seen a Neurologoist who I still see every three months for my Botox top up session, a osteopath, a chiropractor, a acupuncturist, purchased a new mattress & expensive pillows and nothing helped other than the botox which still wears off. I now see a naturopath who is also a reflexologist & am having great results with that. I would suggest seeing a good osteopath/chiropractor or reflexologist in your area while you find a neurologist to look after you. Definitely have tests to see if you are deficient in any essential vitamins. I wish you all the luck in the world, just know you are not alone & things will improve even though it may not feel that way at the moment :)

  • Happy to read you found something that is working for you.

    The important message really is that there is no cure. With migraines, you have to try everything and keep you mind open.

    I managed for 5 years using a very simple tip - pls understand I have extremely severe migraines and very often I have to be admitted to the hospital because I can't stand the pain!

    Tip: if you know there's a migraine coming, at very early stage take 2 motilium tablets ( for the stomach) wait 20 minutes, and take 2 paracetamol. Migraines gone!

    It actually works! I still do it, 80% of the times works.

  • My doctor gavel me lorazepam for this pain months ago. It didn't work then but it seemed to help calm it a bit last night and today. I'm still suffering with the amount of pain. Nerve pain going up my arms, neck, dizziness galore, crazy dreams, apathy to feeling obsessive, brain fog, nerve pain on my face, feeling lightheaded. Disorientation...I'm a wreck. I just want relief. I have stomach issues as well which I'm awaiting a gastroscopy which might be related which does irritate my heart rate. So I have to avoid ibuprofen or aspirin. I just want answers I'm going out now to price out pain killers. This constant dizziness and pain for over two weeks is not normal.

  • Is it possible the ct scan missed a possible tumour? Worried about symtpoms I have. I read ct scans can often miss tumours and mine was without contrast. I have asked about a mri before but my doctor said he can't order those. Not sure why...maybe only a neurologist can do it. Going to see doctor again on wednesday

  • Spent about 2 hours lying in bed with tiredness for no reason and still feel it. It's an unusual tiredness. Sick of feeling unwell. The pain is driving me insane

  • still in pain. codeine isnt helping

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