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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

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  • cathy25159
    cathy25159 Liza66

    Posted

    I was diagnosed w this over a year ago and find it limits a lot of my activities due to the fear of passing out at times or driving n feeling lightheaded. Feel fatigued a lot so spend a lot of lazy time
  • cathy25159
    cathy25159 Liza66

    Posted

    I was diagnosed w this over a year ago and find it limits a lot of my activities due to the fear of passing out at times or driving n feeling lightheaded. Feel fatigued a lot so spend a lot of lazy time. Would love to get energy back but the Drs say just hydrate n lay down w headaches are bad.
    • linda02550
      linda02550 cathy25159

      Posted

      thats not good enough dont accept that just because they may not of come across this or how to help positively

      after 4 years with many test ct & mri scans

      i had a special test colour fluid injected in my spine, whilst on a tilting table finally showed an area in my Thoracic spine

      i had a major operation 7 & half hours long, where they detethered my spinal cord & behind was a hole thats why mri/scan could not pick it up.

      i had muscle taken from my back to heal the hole

      i still had headaches but now after trying many im on Epilim a high dose but it has worked for

      me so able to function much better

      Balance took awhile,even still on a bad day, tinnitus & earache,nauseous too not so great some days

      But grateful i can go on short walks with my grandchildren

      Just want to now go to exercise gently Good Luck to you

      Dont give up

      Professor Peter Goadsby helped me get the help

      i looked for him on line & sent an e-mail He hot back to me He was in USA but was coming to UK so i met him & the rest is history !

  • cathy25159
    cathy25159 Liza66

    Posted

    I was diagnosed w this over a year ago and find it limits a lot of my activities due to the fear of passing out at times or driving n feeling lightheaded. Feel fatigued a lot so spend a lot of lazy time. Would love to get energy back but the Drs say just hydrate n lay down w headaches are bad. I also have tinnitus n vertigo which do not help at all because if I take pain meds it gives me problems w my balance
  • csfleaker
    csfleaker Liza66

    Posted

    Hello everyone,

    I live in the US. I have had Spontaneous Intracranial Hypotension Syndrome & Spontaneous CSF leaks for 9 years. I have had multiple CT myelograms, MR myelograms, Radionuclide Cisternographys, other neuroradiological studies, multiple "blind" blood patches, & one round of targeted blood patches with Dr. Linda Gray-Leithe at Duke University. I have a few things I have learned that I feel are important to know if you, or a loved one have this condition.

    My leaks have only between found on tests twice out of too many to count. On the first test, which was a CT myelogram, I had 5 leaks... and on my last test (4 leaks) after Dr. Gray put in synthetic CSF fluid, which temporarily made my head feel better, and increased my pressure enough, so my leaks had enough volume to leak during the test. I have had leaks in the lumbar area (low back), thoracic (mid-back), and cervical (neck). I am completely disabled from this. I can't even drive.

    I think people should know that unfortunately it is possible to have this illness chronically...and with current medicine in some cases indefinitely. I "pop" new leaks everyday...literally. I can feel and hear some of them. Mostly my neck ones, and the bigger ones in my back. I have weakened connective tissue. It is also possible to have SIH with no leaks...the lower part of the dura (the covering of the spinal cord & brain, that the leaks are in) can just be too stretchy, like a balloon and overfill without popping leaks...thus the brain doesn't have enough fluid as it collects in the low spine.

    Blood patches only temporarily fix leaks. They scab over the holes, but your body has to continue healing it to be a permanent solution. Some people's bodies take longer to heal than others. I feel the medical professionals don't tell patients to be on bed rest long enough. I have talked to many, many people with this condition (mostly online)...& have done a ton of research. I think people feel so much better after the patch, especially after feeling so unwell, and with the Dr.s not recommending enough recovery time...leads to people overdoing things, and ultimately the patches failing. With what's at stake taking it as easy as possible for 6 weeks is really worth it.

    If the patient has been leaking for a long enough period of time, their brain has been having to produce extra spinal fluid to try to keep up with the loss of fluid due to leaks. Therefore after successful patching...they actually have high CSF pressure for a time. This has to be managed with medication, so the high pressure doesn't blow new leaks, or the patches out.

    There is also huge risks with each time blood, dye, or any foreign substance being put in CSF fluid of causing permanent nerve damage. It's actually more of a guarantee than a risk. Obviously with this condition you have to take risks in treatment to get better. I really understand that. I just want people to realize each time blood, &/or dye is injected it does nerve damage, so if the first couple of blood patch rounds fail then it's best to be selective of which treatment(s) you allow to happen after that. At some point you have to draw the line, and only get treatment if it is the best available, and with the best Dr. with the most experience. The last time I had my pressure checked the technician had a very hard time getting the needle in due to arachnoiditis. The nerve damage I mentioned above is arachnoiditis. Not only does this secondary condition cause it to be harder for further tests to be completed, but it also causes the damaged nerves to send out pain signals continuously. It is irreversible nerve damage, and it's extraordinarily painful. I knew arachnoiditis was a possible problem from treatment (learned of it from my research) long before the technician actually found it. I never thought I would get it when I first learned of it.

    The weather does affect how we feel. High barometric pressure, and more often low barometric pressure greatly affect how we feel. Don't let Dr.s blow this off as it's caused by physics and is easily scientifically explained. I feel like a human barometer a lot of the time! I can always feel a storm coming. My most painful days are days when the weather is bad.

    I'm sorry if this post comes off negative, or discouraging. That wasn't my intention. I just think it's good for people to be aware of the pitfalls of this condition. Especially as it's so rare, and a lot of Dr.s don't even know much about it. Patients and their families need to be educated since we have to be our own advocates since there is so much unknown about this.

    I wish everyone the best of luck and I pray that everyone's health gets better!

    Thanks,

    Rachel Poynor

    Michigan, USA

    • ben36911
      ben36911 csfleaker

      Posted

      Hi cskleaker

      So sorry to hear of your experiences with Aracnoiditis, it sounds absolutely terrible. Was this as a result of myelograms or blood patches?

      I've been a sufferer of low CSF pressure for about 3.5 years now but my leak site has never been found, despite many MRI scans and two myelograms. Weirdly though, the last myelogram I had in September 2015 actually resulted in my symptoms completely clearing up for about 9 months. It was wonderful, I didn't have a single headache, it was as if life was back to normal.

      Sadly it didn't last and in June 2016, after a bad coughing fit, I popped the leak again. I've not had any more procedures since and have just been self managing things. I've found at work that sitting bent forward with my head back helps slow the onset of headaches, as does drinking a glass of very cold water. I also take caffeine pills which help.

      I've recently developed hearing distortion in my left ear again though, and the headaches have become worse so I'm seeing my consultant neurologist next week and will ask for a myelogram procedure to help locate the leak, and as a side effect maybe even stop it like last time, although from your experiences it does make me wary.

      I wish you all the best

      Ben

    • amber99286
      amber99286 csfleaker

      Posted

      Hi Rachel

      Please can you advise your symptoms? I am on my 4th Neurologist, after having a constant headache for 2 years, they suspect i have this condition. I have had an MRI of my spine 2 weeks ago, but havent heard anything back. I am also due to go into a day care unit and be put on a caffeine drip to exsperiment if this will improve my headache.

      My symptoms are constant 24/7 headache, constant tinitus, eye pain/ache. Neck stiffness/pain, Shoulder ache. Clicking/popping sounds in my ear + head. My hearing can sound muffled. Facial tingles/numbness. Jaw stiffness+pain.

      Do my symptoms match yours? In a way I hope that do get diagnosed with this condition, as then I will have an answer, and can begin the right treatment. So far I have only been getting treatment for daily migraine, and nothing has touched the pain.

      Thanks

      Amber

    • ben36911
      ben36911 amber99286

      Posted

      Hi Amber,

      These symptoms sound very similar to mine, albeit quite a bit worse. I have constant headaches whenever i'm upright, tinnitus, hearing distortion, neck ache, eye pain and popping sounds in my ears.

      The classic sign of the symptoms being related to low CSF pressure though is whether or not your headache goes away or improves when you lie down. Whenever I lie down I get instant relief from the headache, but not the other symptoms.

      A more invasive test for definitive diagnosis is a lumbar puncture which will measure the pressure of your spinal fluid. It's not a particularly nice procedure and there is a risk it could worsen your symptoms as it creates another hole in the dura. This was the test that gave me a conclusive diagnosis of low CSF pressure as my opening pressure was less than 3 cm H2O, whereas normal readings are 10-20.

      Best regards

      Ben

    • cathy25159
      cathy25159 amber99286

      Posted

      Hi Amber I am in my third year w almost the same symptoms and have been diagnosed with intracranial hypotension after MRI but they could not find leak. The is no fix to it. I'm on a feeding tube and they told me to take in two or three cups of coffee per day. This has helped in decreasing the severity of the head aches. Some days are worse then others. On good days I have a mild headache that I call the numbskull days and the ear noises are bearable if I keep the radio or tv on. I saw someone on this chat that said after a couple years theirs went away so I'm hoping But my neurologist said basically they haven't found a cure yet. Hope this helped some

  • cathy25159
    cathy25159 Liza66

    Posted

    i have same w no leak they think my neck veins are smaller due to radiation 24 yrs ago n low bloodpressure i keep headaches n putting caffinated coffee about 4 cups a day into my feeding tubr seems to be the only thing that helps but my head always feels funny i dont drive as much due to tjat and yes i notice its worse in cod weather or when it changes
  • MMcD1960
    MMcD1960 Liza66

    Posted

    Have been dealing with symptoms for 2 years , blood patch made life live able.

    Other than caffeine and laying down , has anyone found other treatments to help with the constant ringing and headaches that you wake up with ?

    Has anyone experienced depression with this?

    Cognative emotional issues ?

    57 year old male that this has forced me in to retirement , and am looking for any "tricks" like caffeine to help.

    Self medication with alcohol and cannabis does the trick  at night but probably not the best long term route to stay on.

    If there is anyone that has had something worked for you , would be greatly appreciate.

  • linda02550
    linda02550 Liza66

    Posted

    hi Lzza

    i suffered Spontaneous Intracranial Hypotensiom Diagnoised Dec 2006 agter Dr kept telling me i was suffering with migraines Symptoms were horrendous so i feel for your son

    after many trips to hospital, My husband paid privately then diagnosed After 4 years suffering I hot in contact with a Specialist named Professor Peter Goadsby, he travels world USA & UK , where i met him

    he was my saviour

    this debilitating awful where only 1 in 100,000 people get it is soo intense.

    After speaking & having colour injected in my spine & put on a tilting table further Ct Scan & MRI revealed an area mine was thoracic

    i had my major laminectomy in my thoracic area - spinal surgery in May 2010

    so scary but after a 7 and a half hour operation Detethering of my spin cord a hole was revealed where they took muscle from my back to repair.

    I was so glad Mr Dorward at The Royal Free in London Uk performed my surgery

    i now take Epilim to keep my headaches at bay as my brain had dropped & brainstem started to collapse . Thank God for my husband pushing for answers

    i hope this gives hope & guidance to you & your don. God Bless & Good Luck

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