My son has Spontaneous Intracranial Hypotension

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.

Oh I appreciate your humour, bshah. Mind how you go, even watching those roundabouts could bring on a dizzy spell.

My son has headaches and takes paracetamol and drinks coffee, as advised, and he gets by. He has been allowed to go on a holiday to Florida with his family to Disney World, and the flight was OK. Some improvement on last year.

The doctors must be a bit confined on research into this disease, which to me seems more like a rare condition and not a disease, but hey, I'm not a doctor. It's true it is a rare one, we were all told so at the start, but we still hoped for a quick solution. We try to keep up with the latest on it. So far our son has been interviewed a lot and we all wait for results.

Im not sure if i have this but are some of the symptoms feeling water in your head like its leaking out and smetimes dripping, i feel it mostly toward the back of my head, on the left side and on the top. okay pretty much everywhere, ive been in class and my arms have been falling asleep out of nowhere thought maybe that was cause i was leaning on them , today my legs hurt pretty bad thought maybe that was cause i  walked home but they dont usually hurt that bad even my feet hurt was getting sharp pains in my feet actually feel it right now on the bottom of my feet, im always very stiff for some reason, idk if thats cause of anxiet y or what. I have trouble concentrating and my head and eyes just feel weird idk how to explain it , um like i have to stop what im doing and just sit with my eyes closed and get back to whatever im doing. Ive always had bad headaches. The past year or so i get sharp pains in my body? That may because they said i had pancreatitus at the hospital that was over a year ago they told me that ... any of it sound familiar ? 

No, this does not sound familiar. The classic symptom of this spontaneous intracranial hypotension is a headache that disappears within minutes of lying down.

Hello.

I can relate to your symptoms.

The sensation of something trickling in the head, numbness, aching legs and sore feet, also vision disturbances and headaches.

I had a bad fall almost 2 years ago and banged the back of my head on a pavement, and had to go to hospital with an open head wound. For about 6 months I had that sensation of something trickling down on the left side of my head every time I lay down.

My GP referred me to a Neurologist because I had vision disturbance, noises in my ears, balance issues, headaches, numbness and I could not stay upright for more than an hour or so. My Neurologist told me that I had tears in my spine and they were leaking fluid, (SIH), also a suspected tear at the base of my skull.

2 weeks ago I had MRI`s lasting 70 minutes including a brain scan, and should know the results in about a weeks time.

I do not know anyone with this condition so it is good to come across this thread.....although I do feel sorry for the people on here. This is such a horrible condition. 

 

If the MRI is inconclusive or shows nothing get a CT Myelography.  

Welcome ssub92. My word, your mum has had a time of it. I don't think I can help with your queries though. As far as we know with our son having spontaneous intracranial hypotension (SIH) there is no cure but time. He is still in work with the same company and he still applies his skills. He is lucky.

There was a time when consultants were contacted in America but nothing came from it. He went to London a few times for discussions with onsultants. We all just hope that he continues to improve. He drives the car and has taken a foriegn holiday so he copes with the stresses we all have with those things, so fingers crossed. Best wishes to your mum. I hope someone can advise you more.

 

Error in missing the letter "c" in consultants! And I read this over a few times to check for mistakes too.

Hi,

I know what your going through!I sometimes read things on this site (responses) that think fixing this problem is like taking 2 aspirin or carrying a lucky rabbits foot with you will work. Answers and solutions only come from truth telling not soft focused, soft rock dreamy clips of life.

"Half of the problem with this condition is that no one knows what you're going through!"Lets move that % up to about 80%! The absolute worst part of the illness is the isolation of it all. And because of usually lenghtness of the illnesss people lose interest. I also don't know of any alternative to blood patches. However...................

I made it, and my name is Michael. I'm a human being, just like you, and I made it! I went through 7 of the most grueling, horrible years of my life but I made it!The secret to tackling the problem is to not try and take on the whole thing, problem at one time. Take on one smaller part of the problem, suceed, and then take on another small part of the problem and suceed and so forth. Tackling this monster of an illness will only result in disapointment. You can do it, and the reason you can beat this is simple because I did, and again my name is Michael.

Thank you Liza! I think what your son is doing is admirable, its not easy to resume a 'normal' life. A lot of people don't see or think of you as being ill when you have no physical manifestation of the illness like a wound. Thank you for your kind words  

Micheal I read your message to mum and she smiled Knowing people have made it through can help so much. When you have an uncertain situation, it's so hard to see light at the end of the tunnel. I'm glad to hear you're doing better It gives us all hope. 

Hi,

This is Michael. I'm glad I could be of help in some small way! I have

a short humbling story to tell. After I started showing real signs of improvement, and this has happened numerous times in my town, I've had people come up to me and say things like "it's a miracle, we can't beleive you made it, or they'll say something along the lines that I'm the miracle".It's to much for me to process this and I may infact never fully process such comments, but I can truly say that such comments are very humbling!

Michael

I hope all is well.................

Bless yr mum what along time she has put up with her condition.

I'm very interested in the pituitary gland tumour part! As I have been diagnosed with SIH - spontaneous intra cranial hypo tention, I was shown my mri and my pituitary gland is bigger then should be and my brain is slumped also.

I've had 1 blood patch but didn't work so I've to have another mri next month and some sinuses scan ! 😮

We are hoping 2nd blood patch will work with complete bed rest for Atleast 2 weeks after operation. My friend has also introduced me to reiki it's surprisingly helping ease my daily symptoms! 😊