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.
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.
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.
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.
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
Thank you for your response.
So I wait. I guess this is to teach me something, to be thankful for disability insurance? 
I think your son made the right choice not having a hole drilled into his skull, yikes.
Thanks again.
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
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
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.
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
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
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
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
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
Hi Michael,
That's good news, and we all hope the illness doesn't come back.
Liza66
Hi Liza, Michelle, Cheryl.
I am a fellow sufferer of intracranial hypotension.
In my case, Verapamil (slow release) has helped to control the headaches, but I still get them 7 years after onset if I forget my daily dose.
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.
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
Hi bshah, good to know your treatment has helped. Sad that you still need the daily dose though. I suppose that each case of this disease is different with everyone who has it. Keep up with the treatment.
As for my son, he is coping well. He has still not had that operation where they drill a hole into the skull to locate the affected area and to see what is going on.
It seems to be true what has been said upthread, about doctors not really knowing much about it all. My son has had many bits of advice and he has to keep taking things easy, so no marathons, no mountaineering - not that he did those anyway - but you will know what I mean.
Thanks for the reply Liza.
Good to hear that your son is coping well.
While it is sad that I still need the daily dose, I am glad that it allows me to function normally.
I was thinking of looking into something more permanent like a blood patch, but having read what Michael has said about the pain with blood patches and only getting to 80-85% function after seven years, I should perhaps just be grateful for what is (by chance) working for me and also that I was not as badly affected.
I think the problem with doctors and this condition is that the condition is fairly rare. So apart from those specialists with a specific interest, no one sees enough people to get a feel for the variety of effects it has and the treatments that work often.
That is why this discussion group is so helpful.
I am not into marathons or mountaineering either, but have also discovered that even with the medication, I can no longer do rides like the teacup rides at fairgrounds which spin a lot.