April 12, 2017 at 5:14 am #1105Bea17Participant
I am not sure if I have high or low intra-cranial pressure after a blow to the head over three years ago. Symptoms include back of head and neck pain, breathing problems (especially on waking), brain fog and insomnia or sudden sleepiness as well as reactions to food and drink (less now that I’m taking Zantac and Zyrtec as recommended by Dr Diana) I can’t sit down comfortably as pain increases and I feel that I need to support my head with a collar. I saw a Neurologist to find out whether I have a spinal fluid leak and he suggested a head and spine MRI scan with dye and, if that doesn’t show anything, a referral to a Neurosurgeon so that they can drill into the skull to test pressure. This sounds very drastic and I would like to know if there is a less invasive way to tell if you have low or high pressure please. I am undiagnosed with EDS although it has been suggested. Other family members have ‘allergies’ and hypermobility so it’s possible.
Best wishesApril 13, 2017 at 1:50 am #6149YvetteParticipant
I am having trouble getting a proper diagnosis as well. But no one has mentioned drilling a hole in my head. I did take a sample of what is leaking out of my nose to the doctor and it is confirmed spinal fluid. So that much I know, I am diagnosed with EDS and MCAS. So far the tests I have done are a CT scan of my brain, MRI of my brain with and without contrast and a CSF flow study, MRI of my neck and spine, X-rays of my neck with neck flexion, EMG and then I was sent to a cardiologist. I have heard of people getting a spinal puncture to test for inter cranial pressure but I haven’t heard of the skull drilling. Here is what I have learned so far. With High inter cranial pressure you don’t get relief from laying down I was told to recline semi upright by my doc, I personally take 600mg ibuprofen with a Mexican Coke and go see my Physical Therapist ASAP. I know that it’s high pressure when it feel like my skull is going to crack open and my teeth and face go numb and I get intense pressure behind and above one eye. The high pressure causes me to spring a leak out my nose and then I have low pressure from the leak. With that the pain is very constant and dull and awful. Not as intense as high but equally as awful. My doc told me to lay down and get plenty of fluids. My cardiologist told me to make sure to have plenty of salt for my POTS so I take NUUN tablets I use NUUN especially with low pressure days. And I still don’t have meds for this since all my tests came back normal except the CSF coming out my nose and symptoms of sometimes high and low pressure. So this is my routine and its debilitating but I have noticed I feel better when it’s sunny. I hope this helps:)April 17, 2017 at 9:47 am #6150qanikParticipant
The only way to get a true reading of the pressure in the dura is to invade the space. So you can have an LP which many of us have had and a you have said many have post puncture leaks when they are done. Then you get the lie flat and drink caffeine and hydrate talk and if that doesnt work then you get a blood patch. During trauma many times when there is bad brain swelling doctors will drill a hole through the skull and “bolt” the area. They slide a catheter under the skull sometimes in a ventricle of the brain and other times just under the skull but within the cranial cavity. This catheter is then hooked up to a transducer which will give you a constant ICP and is a true measurement of the pressure in your head. These can stay in for days and give you a “trend” of the pressures. The “bolt” term comes from the use a screw that screws into the skull to hold the catheter in place. Also some docs think this is easier on a patients that leak a lot post LP puncture as its the very top of the dura and leakage should not be a factor. That being said its still a pretty big deal and i have had one.
Next, there seems to be some misunderstanding of Cerebral Perfusion Pressure ( CPP) on here. Yes folks have the calculation right- CPP= MAP(Mean Arterial Pressure) – ICP ( Intracranial Pressure). CPP is used to asses whether the brain is getting enough oxygen and nutrients when there is severe swelling, usually from trauma or a tumor. You can not estimate any of the numbers. To get a true CPP you need to have a true MAP which is pretty easy (diastolic pressure- 1/3 (systolic-diastolic). So if you took your BP and it was 120/80 then the formula would look like this 80+ 1/3 (120-80). 80 + 13 would give you an MAP of 93. The only way to get the next number (ICP) is to invade the dural space with an LP or a bolt in the head. You cant estimate. The formula is set up to give you a CPP as you cant guesstimate any numers. So in my example if your MAP was 93 and your ICP was 20 then you would have a CPP of 73. The last 15 or so years the trend in trauma and brain injuries has always been to “optimize” the CPP by elevating the blood pressure on very sick patients. CPP Below 60 and most believe you are not “perfusing” your brain and are having irreversible brain damage. If you falsely elevate the BP on these patients with IV medications then you can increase the CPP regardless of how high the ICP is just by manipulating the calculation. All sounds confusing but its not and is very useful with traumatic head injuries. really not so much for us. I dont know if that helps or not
- You must be logged in to reply to this topic.