Intracranial hypotension (CSF leak)

Hi Andy, thanks got getting back to me. My neurologist suspects I have this after having a constant headache for 2 years. I hope you get some relief soon. Would you mind telling your story? How long have you had your headache, what are your other symptoms?

Amber

Hi Amber -

So this all started in July of 2016.  I came back from traveling and thought the head pressure was associated with the heavy backpack I was carrying around.  It took me a while to really grasp the symptoms.  Essentially, i get pressure in my forehead (and sometimes temples) when I lean forward, cough, sneeze or strain (toilet).  The pressure is fairly intense, almost feels like a tearing.  The pain dissipates over several minutes/hour and sometime goes away fully.  Other times it builds up throughout the day and results in a headache that won't go away until I go to bed/lay flat.  Pain killers only help when it's really extreme (sometimes by neck feels inflamed).  Another symptom that i sometimes get is the feeling that my ears are under water,  I've seen two neuroligists, ENT surgeon, allergist, physical therapist, eye doctor and now a specialist here in L.A. for spinal leaks.  I've had every imaginable CT and MRI that exists, blood tests, scopes, etc.  And I actually went through with the blood patch for a spinal leak because the symptoms are spot on, although it was never really proven that this is my problem,  It has been 5 days and I can't yet see a difference, but still hoping.  Do you have the same symptoms?

Andy

Hi Andy

Yes, I've spoken with my neurologist about his condition and your symptoms sound spot on.

I have had my headache since March 2015, will be 2 years next month. I don't have a minute without it , I'll wake up in the morning with a headache, as soon as I get up it will get worse. I am on my 4th neurologist , the 3 before diagnosed me with daily tension headache and daily migraine. I am currently under a neurologist at a hospital in London who suspects the CSF leak. Although I havent noticed the headache worsen when coughing or on the toilet , If I do any sort of lifting the headache will get alot worse. An average day my pain will be 6-8/10. My other symptoms include eye pain, neck stiffness and pain , shoulder/back ache, facial tingles and numbness, ear popping, constant tinitus, pressure feeling in the ears. My hearing can also seem mufled. Jaw ache + stiffness. These symptoms are also on a daily basis. I hope to god it is IH, just so I have an answer. I have previously had 3 mris on my head , all come back normal. Last week I had an mri on my spine to see if they can find any leaks. I am waiting on the results. My neurologist is stuck between CSF leak or Migraine. But how can someone have a constant Migraine for 2 years ?!

I feel like I cannot live like this anymore, it's so hard just to get through the day. Not knowing how long this condition and pain will go on for. Has this effected your life greatly also?

Will they give you another blood patch ? How long did they tell you it takes before any improvement?

Thanks

Amber

Sorry for your situation, I know it can be really depressing.  I get the tinitis as well, but not regularly.  I am not inclined to try the blood patch again since I don't feel any improvements and the CT myelogram didn't show any leaks.  I am looking into something called occiptal neuralgia in which a major nerve going up the neck is irritated.  Something you may want to look into.