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3 months chronic headaches post traumatic Lumbar puncture + other symptoms need advice pls!

Posted , 3 users are following.

sarah42611
sarah42611

In late November I checked myself into the hospital after a two week long severe migraine. I got meds IV, a CT scan, 1 failed attempt at an LP and one "successful" one after. I felt the procedure on the first with shooting pain all down my back and right leg. I was in tears. MRI was also negative. With 48 hrs my headaches changed, it was not like the regular migraines i have been used to the last 15 years. After three days with an IV they discharged me despite still having pretty terrible headaches that eased a but when lying down. 

Since this hospital visit I have been suffering with daily headaches, unlike anything i have known. I cannot rid them with anything! I also have occasional ringing and pressure in 

the ear. 

nausea, dizziness, pain behind eyes, blurry vision, neck stiffness, tingly/ numb pain in right side of face and right fingers, tingly scalp, feeling like there is stretching or swelling inside my head, popping / crinkly noise in my ears/head, weird feeling in my chest, feeling like the vessels in my temples are inflamed. I am foggy and have trouble concentrating, work is affected and I am scared to work out or fly cause it hurts when I cough or get too active.

At most I sleep max 4-5 hours a night and wake up frequently. 

I have been seeing a neuro who only wants to treat me for migraines despite the fact that nothing works including migraine meds, any advil/tylenol etc.. codeine. He isn't open to the idea that something else is wrong. 

I called info sante on the weekend and she said it sounds like a spinal headache and I should go back to the ER. I just went back Sunday the doc was also not open to the idea of this headache and said it must be a middle ear problem and that codeine and advil will get rid of it. 

I am losing my mind, I am not myself i barely leave my house and have a hard time tolerating most noise. I'm supposed to be going down south in a few weeks and the idea of getting on a plane scares me immensely. 

I need any help or advice from people who have been in similar situations. 

0 likes, 8 replies

8 Replies

  • Tree49
    Tree49 sarah42611

    Posted

    Hello. I am so sorry you are feeling bad. You very well might have a spinal leak. They don’t always show up on an MRI. If it feels better when you lay down you probably have one. You need to see your neurologist and ask them if they can refer you to a pain doctor to do a blood patch. I had a CFS leak two years ago and it was terrible. Try and put a hat on your head and if it is very sensitive then I would think you have a leak. I am not a doctor though I am only sharing my experience. I hope you get some answers. I too have been dealing with some stuff and we are trying to figure out what is going on. By chance when you had your spinal tap did you have any red blood cells in your spinal fluid like a traumatic tap?
    • sarah42611
      sarah42611 Tree49

      Posted

      I don't know, all i know is the doctor told me the first one was referred to as a traumatic tap. I remember that clearly but the rest of the results from it are a blur except that is was negative for infection. 

       

  • arlene77
    arlene77 sarah42611

    Posted

    hi sarah

    reading your story i have the utmost empathy for you.

    i had a lumbar puncture 2 months ago to test for MS. within an hour i had horrendous back hip and leg pain and the next day the headaches started.

    the back hip and leg pain eased after 3 days days but the headaches intensified and on 4th day my partner had to rush me to A&E after waiting 2 hours for a phone call from our out of hours dr. i had a hellish night on a noisy ward with nursing staff who didnt seem to care. i was allowed home with a bag of medication and since then have suffered continuously with headaches and frequent migraines, dizziness, blurred vision, neck pain and upper back pain. ive had endless trips to gp and A&E but no-one cares!!! its like a production line, i wait for hrs in the waiting room, they hook me up with IV and pump me full of drugs and the minute i start to look better they let me go home.

    to date ive been prescribed co-codamol & tramadol for pain relief and naproxen (anti-inflammatory) and gabapentin (nerve blocker)...these take off the edge but dont cure and just leave me feelin like a zombie.

    i started a new job just just before Christmas but have only been able to work a handful of half days since the LP.

    ive paid for chiropractic treatment and accupuncture and have started yoga but no major improvement.

    i feel completely let down by my NHS services..there doesnt seem to be anyone who wants to take ownership or see my treatment through. i feel like im constantly bangin my head against a brick wall with them (and at least that would give me a reason for the pain lol).

    i am now starting to experience tenderness at the area where the needle was placed...i dont feel i can speak to my local healthcare services as ill just get fobbed off yet again.

    im at the stage where i am looking into private medical care. to be able to access this i am waiting on my gp writing a referral letter. it will be costly but i feel i have no other choice. the daily practise of waking with stabbing head pain and consumption of a cocktail of medication has really started to take a toll on me physically and mentally.

    i really hope you start to feel better soon.

    • arlene77
      arlene77 Tree49

      Posted

      no. its a stabbing pain all over rhs in the mornings until i can dose myself up. the meds take the edge off but i have a constant pressure, like my brain is being squeezed, and what i describe as electric shocks from side to side every so often.behind my eyes, more so my right, can be painful also.

    • Tree49
      Tree49 arlene77

      Posted

      That stinks. I know how it feels not to get answers. I have been to four neurologists and only two have given me some type of make sense reasons I am having this in my head. I really feel like maybe something is being missed. I just want to feel normal again. I have never been big on taking medicine but I have had to take them. I am on gabapentine and a muscle relaxer. 
    • sarah42611
      sarah42611 Tree49

      Posted

      I just went back to the ER Sunday and the doc wrote me off as a middle ear infection without being much help but told me codiene would wipe it out, it didn't even make a dent in the headache. IT feels like someone is pulling the back of my brain and gets worse as the day goes on. Just coughing or sneezing hurts, I jog to the bus yesterday and felt like my brain was going to explode.

  • sarah42611
    sarah42611

    Posted

    Has anyone flown on a plane with a diagnosed CSF leak? If so what happened?
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