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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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  • spursangie
    spursangie Liza66

    Posted

    Hi everyone.  I also have confirmed intercranial hypotension but no leak has been identified. It started, I believe, over 7 years ago after two migraines with aura which were different to those that I had experienced before (the aura was multicoloured.) This left me with permanently pink tinted vision and visual disturbances, and clear fluid which poured from my nose, which I suspect was a CSF leak but was attiributed to migraines. In addition I have normal tension glaucoma, and it seems that the IH is also affecting my vision, which is very blurred, with continuous visual snow and visual disturbances which are present even with my eyes shut. I cannot bear the light either. Because of this, I am now registered as severely sight impaired/blind.  I have functional sight but it is very unclear and permanently disturbed.

    For some reason the orthostatic headache is not present, instead I get what feels like terrific pressure behind my nose, around the eyes and in the forehead, worse with movement.  My vision has blurred when bending, coughing, etc for years.  I have a very stiff neck, and general body stiffness, although this may be due to the fact that I rarely go out of the house because of how I feel.  I get very lightheaded at times and feel unsteady on my feet, and have low blood pressure. Since the hospital tests, which left me deaf in first the right ear and then the left, I now have constant tinnitus in my right ear. I still have the nasal drainage although it has still not been tested to see if it is CSF, and my eyes water constantly when I walk. Sometimes I feel as if I am drowning in excess fluid in my head.

    My hopes were raised last year because they had finally discovered the IH and did a number of tests, including a myelogram, cisternogram and MRI scan, which I had hoped would show a CSF leak which they could try to treat.  Because it has not, I have been sent away with no further tests planned, no further treatment because they can't find the leak site, and suggestions that I have CBT and taking antidepressants to cope with the symptoms.  What I really want is for someone to try a blind blood patch, or perhaps have another look to see if they can find the leak.  I try to get on with my limited life as best I can, but I cannot work and find it very difficult because of my sight and the pain.  I am only in my 50's and never imagined that this would happen, I feel as if my life is over.

    Reading all your posts, I realise that I am not alone, despite being told that the condition is rare.  I am not saying 'why me?' because there are people much worse off, I just don't understand why the doctors are making no further efforts to help.  I am going back to the National Hospital in Queen Square next week to try to make the consultant understand what I am going through.  I live in the UK, and if anyone has any recommendations of what has helped them cope with this darned illness, or get better, or the name of a consultant who would be willing to help further, I would really appreciate it.  Thanks so much.

    • bshah
      bshah spursangie

      Posted

      Although I have no personal experience of them, Richard Kerr and his team at Oxford have been recommended to me.

      Who is your consultant at Queens Square?

    • ssub92
      ssub92 spursangie

      Posted

      Oh gosh you sound so much like my mum! She has almost exactly the same symptoms. She was passed around by a lot of docs at UCLH because they could diagnose or suspect IH but had no idea how to manage it. She's now under Ms Grieve, I have no idea whether she will be able to help as she wants to identify the site of a leak if there is one. Although my mum doesn't currently have a leak, and doesnt think she has one, identifying one might be an easier thing to deal with rather than being left with no explanation. 

      I can understand how frustrating it must be for you sad I'm currently taking leave out of a medical degree to nurse her back to help. Lying down and resting, eliminating negative energy (people/friends) all helps. I have been told and read a few papers on caffiene and its ability to increase CSF production although this is very much an unconfirmed mechanism, could be worth a try. 

      I give my mum a hot bath every few days which REALLY helps, with her eye socket, facial, head pain. 

      CBT is definitely worth a shot. People can really benefit from it. Docs can hand out antidepressants without hesitating these days, as it's an easy prescription for them to write. So I would be weary of this, maybe try other things and if all fails, you could try them too? But being able to mentally deal with this is extremely hard. Your whole life just stands still, work, family everything suffers, I know my mum feels like a huge burden. 

      As for the CSF leak, if it still running through your nose, your doc/hospital should be able to test whether it is CSF. My mum used to put it in a bottle and it would get sent to the lab. Have you seen an ENT specialist to outrule chronic sinusitis which can have some similar symptoms? I would recommend Dr. David Roberts, he has a practice on Harley St but also works in another hospital which I cant quite remember now rolleyes 

      Hope this helps, would be happy to answer anything else smile 

    • spursangie
      spursangie bshah

      Posted

      Hi. I am so sorry I have taken so long to reply. Thank you os much for your suggestion or Richard Kerr, I will look into this.

      My consultant is Laurence Watkins. I have had a couple of consultations with him since my post, and he has transferred me to a colleague who is a headache specialist, Dr Matharu. However, my main problem is not the headaches (although I do get them, just not the typical orthostatic type.) He seems to be in no rush to do anything, despite promising a joint consultation with Mr Watkins to formulate a treatment plan. The fact that I have glaucoma, which can be affected by ICP absnormalities, doesn't help. I have identified another neurologist who I hope might see me, but things are getting pretty desperate.

    • spursangie
      spursangie ssub92

      Posted

      Bless your heart, I have only just seen your post. I had forgotten I had written it (I blame the IH!) I know what you mean about being passed around that is where I am now. Your poor mum, and poor you, having to interrupt a degree, that must be very hard on you too.

      I have written a post today explaining what has happened since my first post (did your mum see Dr Matharu?)  Like your mum;s case, they cannot find a leak site, but having Googled Joan Grieve, I was very interested in her vascular expertise as my visual problems started after what was thought to have been a minor stroke when 20 years ago, and I wonder if there is a connection. I have left a message with her secretary to see if I can get an appointment, as I understand she also works at the Wellington, where they do blood patching, although I am not entirely happy about her reluctance to treat if there is no identifiable CSF leak.

      I agree with you about anti depressants, which I refuse to take. I did have counselling from the RNIB because of my sight problems, and this did not help, but have signed up for online CBT which I am due to start next month.

      I am lucky in that I don't get the orthostatic headaches (although I occasionally get one which starts from nothing and is quite severe, at the back of my head, the last one took three days to clear.)

      Please pass my regards to your mum. I would be happy to chat to her on Facebook, etc if she wants to vent!

      Thanks again and good luck to your mum x

    • ssub92
      ssub92 spursangie

      Posted

      Aw no problem! Small update - she has no signs of leaks from anywhere on her MRI so she's resting and is slowly getting better. Her vision is still an issue but there are no immediate problems and it's not getting worse, so we're playing the waiting game. 

      Mum hasn't seen Dr Matharu but Ms Grieve is lovely and very experienced. I hope she can be of help to you. 

      Online CBT! I should research this! Thanks that'd be lovely!! I'll private message you with her facebook details! 

    • spursangie
      spursangie ssub92

      Posted

      Hi and thanks for the reply. They can't find my leak either. Does it affect your mum's sight very badly? I am registered as severely sight impaired/blind and things are getting pretty bad.

      I looked into seeing Joan Grieve, I believe she heads up the neurosurgical unti at the NHNN, but when I called her private secretary I was told that she does not accept anyone without private health insurance, and that she primarily treats pituitary tumours! I am not sure she is telling the truth if she is treating your mum. Very frustrating.

      I have two FB accounts, one is old, but I will look out for your PM. I don't know if there is any way of PM'ing me on this site, but if there is I will give you contact details.

      Thanks again x

    • elaine05672
      elaine05672 spursangie

      Posted

      Hi Spursangie: I live in the US but i was raised in the UN i know just what you are talking about i have most of the condations you talked about i am 62yrs old 1 of things that has helped me a little is to be able to get out and walk i wobble some but i still go, about the ear problem just yesterday my Dr has suggested that i get an hearing aide he stated it should assist with blocking the noise so i am going to check into that, this can be a lonely life please keep in touch so i know how you are doing stay fighting.

      Elaine.

  • 9varun9
    9varun9 Liza66

    Posted

    Hai Am Varun, am from India. i had this SIH b4 3 yrs around feb 2011. at that time my parents worried and we gone to see a doc. He said i have Brain Fever. My parents shocked and they checked me with our family doc for better result. He said us to go Amrita Hospital Kochi India. We gone the doc said to take some check up like CT and MRI. After that doc confirmed its SIH. she said i shud take More coffee or tea and Glucose. so lie there for 5 days. on 3rd i felt relaxed when i get up from the bed. i tried to go around hospital. Now am writting this because SIH symptoms showing now. 

    now its starting stage so am avoiding stress and other travels. 

    those days i had symptoms like

    bright lights makes pain in my eyes

    i cant wake up because when i wake up pain rushes into my head

    now the pain starts in my head

    • michael_28011
      michael_28011 9varun9

      Posted

      Hi Hai Am Varun,

      I had what you have. Has your doctor checked for leaks of your spinal fluid from your spine?

      Take care,

      Michael

    • spursangie
      spursangie 9varun9

      Posted

      You poor thing, this sounds like typical SIH. Do you have clear nasal discharge? If so it can be tested to see if it is CSF. The MRi obviously showed a problem, but they usually do a lumbar puncture (and intercranial pressure monitoring if it doesnt show in the LP, as mine did not), and cisternogram and myelogram to see if they can find where you have a CSF leak.

      All the very best to you.

    • Liza66
      Liza66 9varun9

      Posted

      Hello Varun, sorry for the delay.

      I hope that you can get the help you require where you are, in India or the UK.

      My son is progressing well now and seems to be over it, but he is always aware of what he has been through.

      It does seem that this illness is not easy to diagnose or to treat with any confidence by our health professionals. It is up to the passage of time before improvements are seen.

      I hope you will be successful with the help you are having and I am glad that this thread is helpful.

      All good wishes go to you. Take care.

       

  • ben36911
    ben36911 Liza66

    Posted

    Hi Liza. I'm glad to hear you son's condition is improving. SIH is something I am suffering from at the moment and have suffered from in the past, although not nearly as bad as some people have described here.

    My first diagnosis was about 18 months ago when I was getting debilitating headaches at work and at home that would start in the morning and get worse as the day went on until I would vomit, but I soon noticed they would go away very quickly if I laid down. I was finally referred to a specialist in Leeds (Dr Peter Goulding) after 4 GP visits! He immediately diagnosed my condition as SIH and I eventually had an Epidural Blood Patch in hospital after having some MRI scans and a lumbar puncuture. It sounds as if I was lucky with my patch as it wasn't at all painful, but it didn't immediately work as I still had headaches for a few days after. Thankfully though after some bed rest things did get better.

    I think the original cause of my leak was a combination of over exerting myself in the gym and a heavy fall off my bicycle, but they never actually found the leak site from the scans and tests. I have only recently started getting the headaches again, having had a period of almost a year without incident. This time they have been much slower onset and only seem to come on when i'm sat down, not when i'm stood up. I'm not totally certain what has caused them again, but it might have been an intense sneezing fit I had a few weeks ago. I have also recently started using an abdominal binder, which I read some people had tried, and for me it seems to be having a positive effect which gives me hope. 

    I wish your son all the best for his recovery, i'm sure it will come with time.

    Ben

    • michael_28011
      michael_28011 ben36911

      Posted

      Hi Ben,

      Your recurring problem could be due to the fact that the blood patch didn't completely take?

      Michael

    • ben36911
      ben36911 michael_28011

      Posted

      Hi Michael

      Yes, I think that is a strong possibility. I saw the specialist again on Monday who said another blood patch is an option but that my condition doesn't sound bad enough at present to warrant the risk.

      I think it is gradually healing itself, I have not had any headaches for two days and my hearing has just about returned to normal, the binder really seems to be helping things. I feel somewhat lucky that my condition isn't as bad as it could be, I was horrified to read about your experience. I can only imagine how hard it must have been to go through what you did and I'm so glad to read of your recovery, it gives me hope.

      Best regards

      Ben

    • michael_28011
      michael_28011 ben36911

      Posted

      Hi Ben,

      Thank you for saying that my experience gives you hope, I'm truly touched!I think the best thing for you to do is just keep a sharp eye on things and see how it goes!If you don't need another blood patch all the better! Remember the best strategy for dealing with this illness is try to solve one problem at a time. In my case I had numerous problems at one point and trying to solve them all at one time is impossible and overwellming. If you need to talk feel free to contact me.

      All the best,

      Michael

    • bshah
      bshah ben36911

      Posted

      Hi Ben, 

      Good to hear that the binder is helping you. Would you be willing to mention the model of the binder and any other experiences about its use apart from it having helped?

      It seems like something I should try.

       

    • Liza66
      Liza66 ben36911

      Posted

      Hi ben. Yes it will take time for my son to completely recover. He has had the things you have had and the treatment similar to yours, except the binder. We have not heard of that one.

      We do not talk about his illness/condition (not sure which it is) as he is so 'back to normal' when we see him, so it seems, but he still does have to watch he does not to exert himself too much. However, his holiday photos have shown that he can still play rough-and-tumble with his children and run along a sandy beach. Good for him.

      One thing he used to have to do it to drink lots of coffee! He said it calmed the headaches. He was given this advice as a treatment.

      Your hopefulness will keep you going as it will get better, given time. So I send you best wishes in your recovery.

      Liza

    • ben36911
      ben36911 bshah

      Posted

      Hi

      Sure no worries. I bought it off amazon. I'm not quite sure how but it seems to help increase the pressure in my head, whether that's by increasing blood flow/pressure slightly or by helping to lessen the leak by compressing my lower back. I tried this morning at work without it and could feel a headache coming on soon after sitting down so I put it back on and it prevented it from developing, so it's definitely doing something positive.

      Best regards

      Ben

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    • ben36911
      ben36911 Liza66

      Posted

      Hi Liza

      It's great to hear he's mostly back to normal. Yes, I was given the same advice about the caffeine, and it does seem to help. I keep going through phases of anxiety and feeling lost and worrying about how it's going to affect me long term, but I just have to remember that life is an adventure and the unknown is what makes it interesting!

      Best regards

      Ben

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