I have had intercranial hypotension for almost a year

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I can now manage the pain by lying down and the other symptoms are improving apart from the fatigue and weight loss.  I would like to hear from anyone else suffering from this condition.  My GP had never heard of it so can offer no advice and my Specialists just tell me to be patient.  Bed rest is fine for a while but I would like to know when I can get my life back.  A blood patch has been ruled out for the moment as the pain is not so much of a problem and success cannot be guaranteed.

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  • Posted

    Hi , It's called intracranial hypotension, not intercranial.

     Blood patches are usually only  given is a leak can be found on a MRI scan.  I never had headaches before I suffered a spontaneous intracranial hypotension  which simultaneuosly caused bridging veins to tear and cause a non aneurysmal bleed  called Subarachnoid hemorrghage.  My life has changed completely. I suffer from fatigue, problems with vision, balance, pain in my  head and upper arms. Having done lots of research my understanding is that the pressure of fluid that supports the brain is low, thus brain sagging causing pressure on the cranial nerves. Currently under neurologist at NHS hospital who does not seem to know anything more than I do. Wouter Schievink a Dutch Dr working in the USA seems to be the leading expert on this condition. Hope this helps.

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    • Posted

      Hi Janita, it's a relief to contact someone who actually knows about this complaint.  Most of my knowlege has also been a result of personal research.  I have also suffered from problems with severe postural headaches, hearing, sight and balance and perhaps the most distressing the confusion which had me thinking I had dementia.

      Luckily most of my symptoms are now diminishing as a result of bed rest and caffeine as recommended on the NHS website but I am still losing weight and very weak.  A recent MRI and CT scan showed the leak had healed and I have now to just get stronger.  I should consider myself lucky that I am almost there but it's so frustrating having to rest all the time and I long for the day when I can just make arrangements and know I can keep them. 

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  • Posted

    Hi Patricia, I've sent you a private message
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  • Posted

    Actually, I can't find the option to message you. I just wanted to say that you aren't alone & to say go. There are a few people on here who have the same condition. I've got several tell tale signs & am in the process of trying to get diagnosed. There is a great support group on Facebook for people with CSF leaks x
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  • Posted

    Hi Patricia,

    I also have spontaneous intracranial hypotension.  I first noticed symptoms 4 years ago, but I wasn't diagnosed until a year later.  They didn't know where I was leaking CSF, but I was having terrible symptoms with pain, tinnitus, feeling of clogged ears, and episodes of vomiting, pain in shoulders and neck, and dizziness.  I wasn't having postural headaches at all which confused the doctors.  They did a CT myelogram on me and found 36 possible leaks in my spine.  I did not have any known trauma that could have caused the leaks.  They proceeded in trying to do blood patches with the CT scan over many of the possible leaks.  Unfortunately, they were unable to get to all of the possible leaks before I became nauseous and they stopped.

    After the blood patches, I no longer have spells of nausea, but I still sometimes get shoulder and neck pain, tinnitus, bad headaches when I bend foreward, and dizziness.  I am also experiencing memory problems.  I often can't think of a word I want to use when speaking.  I have balance problems and sinus problems, and fatigue on a daily basis, but I still manage to function throughout the day without excessive pain.  I get MRIs every year to see if it is getting any worse or better.  So far, the intracranial hypotension has stayed the same since my blood patches.

    I too have done lots of research on this because nobody appears to know anything about it.  They told me it is very rare.  This forum is the first time I read about anyone else with this problem.  My neurologist who has practiced a long time said he had never seen anyone else with this problem.  He has only seen intracranial hypotension from people who have had lumbar punctures, and they usually have postural headaches.

    Anyway, unless my symptoms get worse and I can't live with it anymore, I won't be getting anymore blood patches.  The amount of radiation you receive during the CT blood patches is very large.

    I have never had any doctor tell me this can go away on it's own, but I pray everyday that it will.  I eat a very healthy, nutritious diet to try to give my body all the nutrients it may need to repair itself.  I was told not to lift heavy things, or lift weights.  I was told not to hold my breath or do any actions with the Valsalva maneuver.  I was told to treat myself like a delicate flower.  It's not easy dealing with all of this, but I do as well as I can.

    I wish you well, and hope you feel better soon!  I don't know if private messages are possible on this forum, but if it is, please feel free to write me if you need to talk about it with someone who understands what you are going through.  It does help to know you are not alone!  Finding this forum has helped me a great deal psychologically! lol 

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    • Posted

      Hi Shari, your message moved me to tears and I shall stop feeling sorry for myself and realise how lucky I am having recovered so far in less than a year.  I have been assured by one of my doctors that this will eventually go away and when it does it will not come back.  I hope that may be a little comfort to you.  

      Thank you so much to taking the time to respond, I really appreciate your kind thoughts

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