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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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  • cheryl50
    cheryl50

    Posted

    I'm a 54 year old female and I've had this condition for at least nine months. It takes a long time to find someone who can diagnose the condition, my GP had not heard of it. A Neurologist diagnosed the condition as a result of an MRI of the brain. No leak site was found. Medications each night of 35mg of Endep (assists with the nerve endings) and 2 x .5mg of Sandomigran (a migraine preventative) were my saviours to assist me to get back to my work and lead a fairly normal life. However persistent daily/nightly symptoms and a further MRI Scan revealing no improvement prompted the Neurologist to confirm a blood patch. I am a couple of days out from having the blood patch, and just waiting to confirm if it has fixed the problem. Prior to the blood patch I had extremely stiff sore legs, this has vanished and I don't seem to be getting postural headaches, but I haven't resumed all my normal activities yet. Will let you know how I get on. Hope your son can find some relief soon.
  • Liza66
    Liza66

    Posted

    Thank you for your reply, cheryl50. You seem to have had good treatment so far. I am sure that my son has been given the best advice and help he can get on the NHS. The painkillers help too, and he was told to drink more coffee! The caffiene is the thing! He is getting better, no doubt about it, but it is very worrying. We are told that it is a very rare condition and that patients do get better, eventually, of their own accord. My son has had this for nearly two years. I hope you will improve soon. All the best.
  • Michellle
    Michellle

    Posted

    Hello ladies.

    I see this is an old post but I hope you see this and can reply to me. I am a 34 yr old mother who has been suffering with this condition for several months. I have been told I have a spontaneous cerebrospinal fluid leak but after 4 CT scans, 2 MRI's, and a nuclear scintography study...they can't find the leak. I am on bed rest and waiting for blind blood patches as an attempt to fix me.

    Liza, did your son get better? I used to run and play roller derby but a short walk now has me winded and I frequently fall down and experience paralysis of my arms. I'm terribly afraid this is my new life. It seems to be quite rare. I can't find very many people who have gotten better.

    • michael_28011
      michael_28011 Michellle

      Posted

      Hi Michelle,

      I had the same illness you have. I did finally get back, almost took me 7 years. Bad news, going through it is a nightmare. Please feel free to contact me with any questions you may have.

      Michael

    • Michellle
      Michellle michael_28011

      Posted

      hello. i just saw your message and have to say i'm sad to hear it was 6-7 years before you got better. did you slowly improve or was it one day you were better? i am slowly improving. i can stand and walk for long periods of time now. i am in chronic pain but the pain levels have reduced to 4-5 on the pain scale, with occasional spikes to 8-9. i have been focusing on pain management so i can try to return to work sometime soon. 

      can you please let me know how you were able to return to full health?

      i had 5 blood patches which seemed inefective. the dr's found 6 small leaks in my cervical and thorasic spine. the dr's think my body is just slowly repairing itself. 

    • michael_28011
      michael_28011 Michellle

      Posted

      Hi Michelle,

      I struggled badly for years. I had trouble talking, walking,used a cane for about 3 years, bad headaches, terrible dizzyness,almost no memory, drooling, lost 80 pounds, and I'm thin to start with, a nightmarish experience. About a year ago I started to get better. Today I still have a few physical problems, but nothing serious. I asked my current doctor twice why I've gotten better, basically his response is "I have no idea why". I wish I had a simple answer on how I got better, but I don't. Some people in my neighborhood have noticed my great improvement, and some have asked?, "is it new medication"?, nope, I'm not even taking medication for the illness anymore.

      I had between 4-6 blood patches before it took. Tried both the synthetic patch, and the blood patch, the blood patch "FINALLY" worked. I hope your body does slowly repair itself. I know when I was in between failed patches, my life was a real rollercoaster ride.

      Michael

       

    • kristin19284
      kristin19284 michael_28011

      Posted

      hello,

      I am 17 and I was diagnosed at 16 a year after I had swung a golf club  that hit the ground and caused severe headaches and pain instantly that was only relieved when lying down flat and continued sporatically. I was told by doctors that my tear was unusually big. The first year it was difficult to find a diagnosis until finally the tear was found in an MRI scan. I spent over 6 months unable to eat sleep or get up with out severe pain and pressure from my dura lacking fluid.  I am wondering now after two years and two blood patches, what symptoms you have experienced since I have such a wide variety of symptoms and I am not sure if I am improving or there is enough problem to continue blood patches. Currently I am experiencing throbbing pain at the back of my skull with stairs and physical exertion that is getting worse over time.  I also am not sure if symptoms are coming from my spinal problems that are resulting from the insertion of the needle from the blood patch in my spine that significantly moved a vertebre that still seems to be out of place. I would like your opinion on getting further blood patches becasue they're so painful and dont seem to be fixing the problem.  Are anyone elses blood patches usually very painful? I experienced stinging pain in my hip while the injection was being done that the doctor said was normal.  

    • michael_28011
      michael_28011 kristin19284

      Posted

      Hi Kristin,

      I've had your illness, it took almost 7 years for me to get back to about 80 to 85%. Blood patches are extremely painful, I had about 4 or 5 of them. There is also a synthetic patching material which I tried but it is just as painful. Sorry to say this but you have no other choice as far as patching goes, I wish I something nicer to tell you. At my worst point i had lost 80 pounds, drooled, had trouble walking, I used a cane for about 3 years and had trouble talking. I had memory problems and other problems that are 5o gross or horrible to mention. I was very close to being put into an assisted living estsblishment.

      O.K., enough of the bad news. The good news is I made it. I still have people come up to me in the street and say things like "it's a miracle, we can't beleive your doing so much better, we didn't think you were going to make it."A humbling moment to say the least. The worst thing to me about this illness is the isolation. There are no support groups and 98% of doctors don't have a clue. I've never met anyone in person withthis illness. But remember this when things get bad, you can beat this horror of an illness. There were many times I didn't think I could bet it but I did. The only thing you can do is hang in there and remember, the real cure comes through your heart and the ability to keep fighting. I did it and so can you.

      Michael

    • elaine05672
      elaine05672 michael_28011

      Posted

      Hi Michael: I just found this web-site I have had this condation for a year now still struggling I was very pleased to hear that you are better it took a long time, did you also have Tinnitus i have that very bad also. this is my 1st time writing not sure whay all to say.
    • michael_28011
      michael_28011 elaine05672

      Posted

      Hi Elaine05672,

      Good to hear from you. Thanks for the kind words. I do not know what Tinnitus is? However, if you have any other questions on the illness, I would be happy to help!

      Sincerely,

      Michael

    • elaine05672
      elaine05672 michael_28011

      Posted

      Hi Michael: Tinnitus is the ringing in the ear i saw my Dr today and he told me that my condation is worsen due to my lack of sleep, i have a hard time going to sleep so he has recomended me to have some Cognitive therapy to help me to relax. This illness is madning all you can do is one day at a time some times half a day at a time. Thanks for your reply.
    • michael_28011
      michael_28011 elaine05672

      Posted

      Hi Elaine,

      I did not have ringing in the ear but I did have peripheral vision problems.I' m quessing your getting M.R.I.' s test which are for the most part useless. If you don't mind, let me know what test you are getting?

      You are exactly right, this illness is madening. What helped me was trying to improve one small thing at a time. Because their are so many problems with this illness, it can feel overwehlming.

      Contact me anytime.

      Michael

    • elaine05672
      elaine05672 michael_28011

      Posted

      Hi Michael: Thank you for your reply I have had 2 MRI's a balance test to check my vertigo and a mylogram, neither the MRI or the mylogram could not find the leak, i was told by my Dr today that a hearing aide could possible help with the ringing in the ear so i will be checking into that as for the (SIH) i will try the small things, did you have trouble falling asleep?

      Thanks

      Elaine.

    • michael_28011
      michael_28011 elaine05672

      Posted

      Hi Elaine,

      MRI's and mylograms are far from perfect in dealing with this illness. When I talk to my doctor again I will ask him about better testing. I did not have trouble falling asleep from the illness but I did on ocassion have trouble falling asleep due to worrying about my health in relationship to the illness.

      The hearing aid sounds like an excellent idea.

      Feel free to contact me anytime,

      Michael

    • elaine05672
      elaine05672 michael_28011

      Posted

      Thanks Michael let me know what you find out about the testing and you are right my sleeping does have to do with the worry about my health, and i am looking into the hearing aide.

      Elaine

    • elaine05672
      elaine05672 kristin19284

      Posted

      Hi Kristin: I have had the same problem for a year now the Dr's are not sure what started mine and yes i have had 1 blood patch and it was verry painful to the point that they will not do another due to my spine been so narrow, so i go on one day at a time with hopes that i will improve how are you improving?

      Elaine

    • michael_28011
      michael_28011 elaine05672

      Posted

      Your very welcome Elaine!

      Again, any time you need to talk, feel free to contact me.

      One of the worst things about this illness is the isolation. Because of the illness being rare, their are'nt many if any people to talk to. 

      Any questions or thoughts you may have please feel free to voice them with me. One of the big steps to recovery is to talk and keep talking!

      Sincerely,

      Michael

       

    • elaine05672
      elaine05672 michael_28011

      Posted

      Thanks Michael i do agree i am so glad you have beaten this you have given us all hope and i will continue to do all i can to help myself.

      Thanks again Elaine

    • kelly11917
      kelly11917 Michellle

      Posted

      Hi Michelle

      Are you still having issues ? How did you blood patch work ?

    • mike_24788
      mike_24788 michael_28011

      Posted

      Hi Michael - I’m Michael as well and dealing with a lot of what you describe.  Is there any way I can email you?   I need a best path.  I’m about 9 months into a leak from lifting weights.  

      Thanks

      Mike 

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