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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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  • Liza66
    Liza66

    Posted

    Hello Michelle, I got your message here but not your private one sent shortly after you posted this. I tried to retrieve it but got only a blank screen. No idea why.

    I am pleased to tell you that my son is back in full time work, and he still has to be careful not to over-exert himself though.

    He has been to see specialists in London on three occasions and he has only had reviews of his condition, no actual treatment. However, he was told that he can opt for some invasive research which entails having a hole drilled into his skull in the area concerned to actually see what is happening. That is far too drastic. He has not chosen to have it done. I don't blame him.

    It is quite odd this one, and with no actual remedy for it there is only time on our side. I said once to him, "They can put a man on the moon, but..." and left the rest unsaid. That is where we are at now.

    I hope you have plenty of help with yours and find that you get better over time. Best Wishes, Liza

  • Michellle
    Michellle

    Posted

    Thank you for your response.

    So I wait. I guess this is to teach me something, to be thankful for disability insurance? wink

    I think your son made the right choice not having a hole drilled into his skull, yikes.

    Thanks again.

  • michael_28011
    michael_28011 Liza66

    Posted

    Liza66,

    Hi,

    My name is Michael, and I live in the U.S. I had Spontanious Hypo Tension of the Brain  for about 6-7 years, I've finally beaten it! If you have any questions on this rare and difficult illness, feel free to e-mail with questions, hope all is well!

    Michael

    • Liza66
      Liza66 michael_28011

      Posted

      Hi Michael,

      I am shocked that you had the condition for that long, and pleased that you have got better from it. It would be of interest to all on this thread how you did it and what happened in the process, so we should all contact you about it, really.

      Our son has still got the symptoms and has been back to see a specialist too. He has given more thought to the operation he has been told he could have - drilling a hole in the skull to find the problem - and he may decide to go for it, but it is all on hold so far.

      Meanwhile, he still goes to work and still has to take it easy. He gets tired and has headaches, but he says it is a matter of him and his body getting used to it. Living with it, to be honest.

      Liza66

    • michael_28011
      michael_28011 Liza66

      Posted

      Hi Lisa,

      I wish I had an answer on how I did it, i.e., get better? Truth be told, I simply just got better, no stratigy, no medication, I finally came out of it, I'm probably at about 90, 95% now. The process was a true nightmare. Bad memory lose, trouble walking, trouble talking, drooling, big weight lose, dropped 80 pounds, and I'm skinny to start with, lost my drivers license, because of trouble with my motor skills and memory, I have never experienced anything even close to how horrible this illness can be.

      I very likely had the sugery your son is considering, drilling a hole in the skull. While this sugery may work for some, for me it didn't. My current doctor thinks that this sugery, if anything, caused more problems with the condition.

      Getting tired and having headaches is par for the course with this illness. I had some headaches that made migranes look like a day in the park, those thankfully have gone away. 

      At this point in the process of this illness, your son's only real option is to do the best he can with it, live with it. As far as the headaches go, their are some very good medications for that.

      Michael

    • Liza66
      Liza66 michael_28011

      Posted

      Hi Michael,

      Yes, you are right about the painkillers. Thanks for all that info, truly interesting to hear about your time with this dreadful illness.

      It does sound like you have had it a lot worse than my son. Sorry the operation has not worked for you. My son will decide one day and, if he has it, then it will be a nail-biting time for us all.

      So glad you are well over it now. Gain some weight back next, and see if your health improves to 100% fitness. 

      Liza66

    • michael_28011
      michael_28011 Liza66

      Posted

      Hi Liza,

      The decesion on having the operation is a tough one, I don't envy you or your son. 

      I have gained the weight back, and am now exercising everyday to get my endurance back.

      Michael

    • Liza66
      Liza66 michael_28011

      Posted

      Hi Michael,

      That's good news, and we all hope the illness doesn't come back.

      smile

      Liza66

    • elisabeth23040
      elisabeth23040 michael_28011

      Posted

      Hi Michael

      What treatment have you had to beat this illness. I have had Spontaneous Hypo Tension for the past 13 months combined with tinnitus and burning tongue. No diagnosis yet!!! I am very reluctant to take medication for the rest of my life.

    • michael_28011
      michael_28011 elisabeth23040

      Posted

      Hi Elisabeth,

      Sorry for not getting back to you sooner but I had a problem with the patient.info site.

      How did I beat this illness? Well, I have no "silver bullet", compact, neat answer. I had a number of blood patches until finally it took. I took Tramadol to help with my headaches. When I look back on it I ultimately out lasted it. I had a small group of people who helped me at critical moments. I finally found an excellent doctor who "got"it and I keep asking questions, even though during bad streches I was not able to do that. 

      You may want to examine this test further. It is called Radionuclide Cisternogram. I never actually had this test myself, but I have been told it is the best at revealing problems with the illness. I had lots of M.R.I.'s and they were of no help what so ever. I have no more special skills or abilities to have fought off this illness than anyone else. Try to tackle one thing at a time and know that I made it out of this and you will too!

      P.S. I will probably be taking medication for the rest of my life but it is for high blood pressure. 

      Please feel free to contact me with any questions or concerns you may have.

      Sincerely,

      Michael

    • kurt20919
      kurt20919 elisabeth23040

      Posted

      I am actually 5 days out of my second bout with SIH. The tests that found both of my leaks were flouro-myelogram after lumbar puncture with contrast and and ct-myelogram after lumbar puncture with contrast. From what I have read MR is not the preferred tool for finding the location of the leak, but will show enhancement that is indicative of a csf leak. Two high volume blood patches the first time (2013) and one high volume blood patch this time. Hang in there, its not real fun... If I can offer any insight I would be glad to...
    • dale1954
      dale1954 michael_28011

      Posted

      Hi . A few years ago after several neuro appointments I finally saw a neuro that diagnosed a Spontaneous spinal fluid leak. I was treated with a blood patch and told if the headaches come back to be on bed rest fluids and caffeine. I was OK on and off for a few years these last few months have been horrible there are days I cannot stand up for more than 10 minutes. I went back to see this doctor and he said well since you drove here over an hour to see me and you're obviously sitting up in front of me it cannot be the leak ! I told him the last time I saw you I also drove the same hour to see you and was sitting in front of you and you diagnose me with the leak. I also started to say that it was only 10:30 in the morning and when my husband was driving I was laying back in the car most of the time but he cut me off give me a quick examination and told me I had a pinched nerve and I needed to go for facet joint injections in my neck. I totally disagree with this diagnosis. If it was coming from a pinched nerve or the slight neck arthritis that I do have I do not think the headache would calm down when I lay down. When the doctors say bed rest do they mean lying flat?

      I will have to do the caffeine bed rest fast fix and then start my search for a new dr once again.

      When the leak is active ...do u think the headache has to be constant as my dr was implying?

    • matt2183
      matt2183 michael_28011

      Posted

      Michael,

      I'm sorry you had to deal with this illness for so long and I'm happy to hear about your improvement!

      6 years ago my wife had a spinal fluid leak after an epidural during the birth of our first child. A blood patch did not resolve it and it took a couple weeks of bed rest.

      Two months ago, she developed a similar headache randomly. After several doctor visits, CT scan, MRI/MRV/MRA, they found no smoking gun. I was convinced it was a spontaneous CSF leak, but was concerned that no doctor would explore this due to many being unfamiliar with the phenomenon. Luckily, it was one of her neurologist's first thoughts. Her headaches seem to be mostly postural however, when they get bad (typically after she's been out of bed and more active), they seem to never go away regardless of posture, only change somewhat. After several days of bed rest, they will start to become less and less severe. At one point, she was headache free for three days (only a heavy, swimmy feeling remained), but caught a cold and after coughing for a night, the headache was back with a vengeance. She also gets naseaous, has tinnitus and stiffness/occasional burning in between her shoulder blades. She's considering a blood patch, but is reluctant to have any more injections near her spine as she suspects that the original trauma in that area could have weakened her tissue and caused this.

      I'm curious if your headaches were always completely postural and if so, did they go away completely when lying down?

      Thanks for all of the information. Hard to find people who have dealt with this.

      Matt

    • michael_28011
      michael_28011 matt2183

      Posted

      Hi Matt,

      I had headaches standing, sitting or laying down. The story about all the test and the doctor coming back and saying something like, "Well we really don't see anything," or "everything looks fine" is a common one, it happened to me too. I'm sorry to hear you and your wife are going through this.

      Suggestion: There is a test that I'm told is better and more conclusive. It is called Radionuclide Cisternogram. I only learned of this test after I got better. Talk to your doctor(s) to learn more about this.

      I hope this has been helpful. Please feel free to contact me whenever you have a question.

      Michael

    • matt2183
      matt2183 michael_28011

      Posted

      Michael,

      Thanks for the reply. It's really nice of you to be so willing to talk about this with people on this forum. As you know, this is frustrating because it's not easy to get diagnosed as it seems that most doctors aren't fully up to speed.

      My wife went in for a blind blood patch yesterday. Today, she basically still has a headache, but now a stiff back... I'm taking more time off work to allow her to truly bedrest (we have three kids 6YO or under) for a week to see if we can get this to heal. If we don't have any luck, we are definately going to ask about the test you suggested.

      Curious, did any of your blood patches ever work for a period of time, then later fail? Or did they always not make a difference?

      Thanks again for the feedback and suggestions.

      Matt 

    • michael_28011
      michael_28011 matt2183

      Posted

      Hi Matt,

      I had a number of blood patches and I also had one sythetic patch. At first the blood patches would work for a couple of months and then fail causing me to revert back to being quite ill. The last one of course worked but this procedure is not the best. For these advanced times the process seems rather archaic. 

      Your welcome for the feedback. Always feel free to contact me!

      Michael

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