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My son has Spontaneous Intracranial Hypotension

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Liza66
Liza66

My son has had this condition (SIH) for well over a year now, and he is just beginning to function enough to go back to work but with reduced workload. His boss is very understanding, and he is lucky with that.

I have not heard of this condition before and wondered if anyone else has had it and how they managed with it. Just rest is the order of the day, use painkillers and drink more water.

The debilitating aspect of it was having to lie down a lot and the headaches were intense. He has seen specialists but no actual treatment has been forthcoming. It seems that it will repair itself, and over a long period of time. It is a weird condition. The brain looses its bouyancy as fluid drains away. More info is required about this condition, without scaring people though, but if it happens, then it happens.

1 like, 119 replies

119 Replies

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  • jantina29049
    jantina29049 Liza66

    Posted

    Hi, I suffered spontaneous intracranial hypotension which caused a Subarachnoid Heamorrage a year ago it took  several scans and tests and a month in hospital to reach the diagnosis and the neuro surgeon and neurologist reached a compromise with the final diagnosis of a SIH with probable SAH. Since leaving hospital their has been no support and the stroke support group did not want to know. The neuro surgeon says that I should have recovered by now but I haven't.  I suffer balance problems, weakness in upper arms pains in my head and exstreme fatigue. Sometimes I cannot write using a pen. My right eye twitches and although my diplopia has gone I still get blurred vision and have difficulty with my right eye when I wake up in the morning. My fear is that another attack will cause another bleed as a bridging vein tore in my brain which was similar to my head being crushed and my neck being ripped by a crocodile.People do not understand that you can feel fine one minute and the next you are flat out and disabled. No information or support. No support group in UK.
    • elaine05672
      elaine05672 jantina29049

      Posted

      Hi Jantina: I know just what you are saying i live in the US for this illness because its so rear must Dr's dont have a full understanding and how to treat this problem and it appears to most people if they speak with you today and you sound fine then you must be fine, i know what you are saying each day is different you never know how you are going to feel, just take one day at a time i have started using Aroma Therapy candles and oils anything to help me to relax thats what you have to do

      take it easy let me know how you are doing.

      Elaine.

  • kate49711
    kate49711 Liza66

    Posted

    Hi

    i don't normally comment in these groups, as living with SIH means I rarely have any good news. However, after three years I finally got good news last week.

    i was diagnosed with SIH three years ago, when my spinal fluid completely drained (not one drop left) and I had a brain haemorrhage as a result of my brain sinking through the base of my skull. Unfortunately, it took refusing to leave hospital for me to be referred to the NHNS in Queen Square for my diagnosis due to the lack of knowledge in this area. 

    I've had 4 blood patches (unknown CSF leak site) and on my fourth I had a spinal stroke and lost the use of my lower body. I'm now recovered from the stroke, but am no longer permitted to have blood patches due to the increased risks. 

    After I was hospitalised again last year from a second severe brain haemorrhage  they identified the leak to be in my upper thoracic and lower cervical spine, and operated to try and find they leak. They couldn't find it, and I had a multiple level fusion at the surgical site.

    howevere, last week, they have FINALLY found the exact site of the leak. I agreed to be a test patient for a new CT myelogram technique, where instead of injecting the dye into the spine, they inject into the Dural space outside of the spine and see where it leaks back in. Peter Cowley in Queen Square (consultant radiographer) came up with the technique. This means they can now surgically repair the leak.

    So, despite the lack of funding for research in this area, I had to share that progress is being made!

    • bshah
      bshah kate49711

      Posted

      Thank you for taking the time to post, Kate. It is good to hear about the new technique. I wish you well with the repair.
  • shari61274
    shari61274 Liza66

    Posted

    Hi Liza,

    I am 49 years old.  I have had spontaneous intercranial hypotension since around 2010-11.  I was finally diagnosed in 2012.  I was diagnosed with cancer in 2010.  I noticed a change in vision, ringing in the ears, balance issues and fatigue while going through chemotherapy.  I assumed these issues were because of the chemo.  Chemo is poisoning the body, so I assumed it was all because of the chemo.  When I finished my treatment and was cancer free, I continued to have the symptoms mentioned above.  A year later I had several vertigo episodes and my ears felt clogged and were ringing.  The doctors said my ears were probably clogged due to allergies and put me on an antihistamine and nose drops.  I never had orthostatic headaches.  About six months after that, I started having these monthly episodes of intense dizziness, vomiting, poor eyesight, pain in my neck, shoulder blades and headaches.  They were bad and put me out of commission for a week at a time.

    After four months of these episodes, the doctor sent me for an MRI.  The MRI showed I had intercranial hypotension and a small speck of hemosiderin (iron staining from blood).  After many more tests, it was suggested that I have a CT guided blood patch and myelogram.  The myelogram did not show actual leaks, but showed many possible leak locations.  The myelogram and CT guided blood patches turned into a 7 hour procedure.  I was only lightly sedated.  After drawing my blood and filling 34 possible leak sites, I started vomiting on the procedure table and they stopped the blood patches before getting all of the possible sites filled.  I spent 3 days in the hospital after the procedure to be monitored.

    After the procedure, I still had a few more episodes, but they lessened.  Now, almost 3 years later, I sometimes get headaches when bending forward or down.  They are quite painful, but go away after 20-30 seconds.  I still feel dizziness, and have balance problems, but the ringing in the ears have improved.  I also have problems with memory, mostly, thinking of words to use when speaking or writing.  I feel numbness and tingling in my arms at night when sleeping, and I have a lot of fatigue.

    Every year I have another MRI to see if there is any improvement.  I had some improvement after the blood patches, but I haven't had any significant improvement since then.  I just try to live with it as best I can. The doctors have said there is nothing else that can be done at the moment, so I try to heal myself in everyway possible.  I eat a very healthy, low salt diet.  I found that this was helpful.  The doctors told me I shouldn't lift heavy things, or do any weight lifting.  They told me to consider myself as fragile.  I walk for exercise when I feel well enough.  I drink a cup of coffee everyday because i was told it could help.

    When I was first diagnosed in 2012, I did a lot of research online about it, but I couldn't find anyone else who had it.  I was never told that it would one day go away by itself, but I pray that it will.  The CT guided blood patches emit a high amount of radiation, so I will only do it again if my symptoms get worse and I can't deal with it anymore.  Most doctors I go to have never heard of this condition.  Most people get spinal leaks from accidents or physical trauma.  No one knows how or why you can get this spontaneously.  My suspicion is that the toxic chemo put holes in my spine, or lessend the integrity of my spinal dura, but no one else has ever confirmed that this is possible.  If anyone knows of a physician who specializes in this condition in the United States, please let me know.

    I'm not happy that anyone else has this, but I am happy that I am not alone with this as I always thought I was.  I'm sorry for blabbing away with such a long post, but I've never actually told anyone about this because they usually don't understand what I'm talking about.

    Thanks for reading my post!

    • Liza66
      Liza66 shari61274

      Posted

      Wow! Firstly, welcome to the Forum, and to this topic. It is certainly an odd one! The complaint we all write about is not talked about anywhere, so I have found, except in this Forum.

      Our son is getting better, as I have written, and I still keep this page open to get any responses, and to reply.

      As for your encounters, you have had a lot to contend with and it is always amazing how people cope with it all. I really do hope that you get the relief you are looking for, and soon. You have certainly done a lot to help yourself, and you should be proud.

      All anyone can say is to wish you well and to hope that one day the medical profession will find an appropriate treatment for us.

    • ben36911
      ben36911 shari61274

      Posted

      Hi Shari

      So sorry to read of your horrible experience, it sounds like you've been through hell, that blood patch experience sounds terrible! There is a name of a US Doctor I keep reading about on forums who everyone says is excellent at finding CSF leaks, that's Dr. Linda Gray at Duke Hospital in Raleigh NC, you might try and get in touch with her, a post from last year says her P.A. is called Jeff and the number is 9196687221.

      At the moment I’m still suffering from a CSF leak in an unknown location. I've recently developed some quite bad hearing distortion in my left ear where voices and music sound robotic, (kind of like how the robot talks in the film Wall-E) as well as some low frequency tinnitus. I've been back to see my Neurologist Dr Goulding and he is quite sure that it's a temporary symptom due to the constant pressure differences and that it should resolve eventually. I'm due to have a blood patch next week and have also been prescribed Prednisolone 40mg for two weeks to try and help.

      I wish you all the best and hope you are able to make contact with Dr. Gray and she is able to help you in some way.

      Ben

    • shari61274
      shari61274 Liza66

      Posted

      Thank you Liza!  I'm so happy to hear that your son is getting better!  Did he do anything in particular to resolve the hypotension?  Thank you for keeping this page open.  I just found it today, and I'm grateful to be able to talk with people who understand the problem!  Well wishes to you and your son!
    • shari61274
      shari61274 ben36911

      Posted

      Hi Ben,

      Thank you for replying to my post.  I had my blood patches done in Florida, and the radiologist who performed the procedure told me he was trained by a woman at Duke University.  It may be the same woman.  I will definitely try to get in touch with her.

      I'm so sorry to hear that you're still suffering as well.  I'm not sure if it is only in my mind, but it seems that when the weather changes, my symptoms worsen.  I always assumed that weather pressure changes are effecting the pressure in my head.  Sometimes when a storm is approaching it feels like my tinnitus and dizziness worsen.  I hope that your symptoms are temporary and that it will resolve very soon!

      Is the blood patch you are getting next week your first?  Is it CT guided or a blind blood patch?  I wish you luck and a speedy recovery from your procedure!

      I wish you all the best and hope this blood patch solves your hypotension problem!

      Thank you for the physicians name.  I've called hospitals looking for someone who specializes in this, and nobody seems to know of anyone.  This is the first real possibility.  Thank you!

    • Liza66
      Liza66 shari61274

      Posted

      Thank you for your well wishes, I will pass them on to our son.

      He took all the usual advice given by the doctors, had a spell in hospital where he was lying down all the time as he felt so dizzy, took rest at home and drunk strong coffee...all seemed to help as time went by. He had the patches too. Also, a few visits to specailists which was just for a chat as it turned out, and he was given tests.

      It really does seem to me that the medical professionals do actually know a lot about this problem but they also realise that it will go away of its own accord and so they cannot do much about the treatment as yet. It remains a mystery until something is discovered and more is known.

      Meanwhile, keep on thinking about the day when you will be free of it. It will surely come and you will be over it.

    • ben36911
      ben36911 shari61274

      Posted

      Hi Shari

      I had my blood patch yesterday (22ml of blood), it was just a blind patch between L3 and L4 as they decided the leak would be so small it would most likely not show up on CT. It was a little more uncomfortable than the one I had before but seemed to go well. I am now back home resting in bed so I will know in a few days once I am more active if it worked, fingers crossed!

      I also went to see my GP again about my hearing loss at the beginning of the week as it was really concerning me. We discussed some options and he agreed to let me try a course of Betahistine tablets (usually used to treat Menieres disease). Withing 48 hours my hearing had improved dramatlcally, i'd say it's almost back to normal now which has lifted my spirits greatly. I still have some tinnitus but at least people don't sound like robots and music sounds good again! I was so terrified about the possibility of never hearing music the same way again and to have it return really kept me cheery when I was in hospital. I had tears rolling down my face I was so happy when I could hear my favourite song!

      Did you have any success getting in touch with Dr Gray?

      Best regards

      Ben

    • shari61274
      shari61274 ben36911

      Posted

      Hi Ben,

      I'm so sorry that your blood patch was more uncomforatable than others you have had.  At least it is over and you are resting now.  I hope that the blood patch helps you.  Did you have to stay long in the hospital?

      It is wonderful that the Betahistine medication they gave you worked so well.  I know it must have been frightening to not know if you would ever hear your music and everything else the same way again.  I'm so happy for you that at least your hearing is mostly back now.

      I left a message for Dr. Grey to see if she can recommend anyone with her training in my area.  If she can't, I guess I'll be taking a trip to North Carolina.

      I know what you are going through with the intercranial hypotension, and I wish you well in your recovery and hope you feel better soon!

  • elaine05672
    elaine05672 Liza66

    Posted

    Hi Liza: Just found this web-site sorry to hear about your son i too have this condation for a year along with severe Tinnitus it has disrupt my way of life all the way i am not sure what to think any more my Dr's have not been able to help me I am so depressed and feeling hopeless, please excuse me if i dont spell things right or speak right my head shakes so bad to think.

    thanks. Elaine

    • michael_28011
      michael_28011 elaine05672

      Posted

      Hi Elaine,

      Ask your doctor about this test. It is called Radiouclide Cisternogram. I have been told that it is better than mylograms or MRI's in finding leaks for spinal fluid. If possible, also do some reading up on this yourself. 

      During my illness I had all to many MRI's and mylograms. Every MRI I ever had never gave the doctor or myself answers.

      I hope this day finds you better than yesterday,

      Michael

    • elaine05672
      elaine05672 michael_28011

      Posted

      Thank you for the information I will get started reading about thins now.

      Elaine

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