Reading about so many fellow ICPDD patients with terrible headaches, pain, when their pressures are high. Questions about “How can I make this stop?!”. Short of proper diagnosis and medical intervention, relief from symptoms of high intracranial pressures may not be completely possible, but I know from personal experience that certain things help me enough to make things at least bearable. I don’t know if they will help you or not, and as such, I’m opening this page up to comments so everyone can learn from everyone else. This is the first time I’ve done this on ShuntWhisperer. I pray it helps because I know the terrible toll that incessant pressure and pain can have on a human being. One of my goals when I started this site was group data mining to help direct opinions and treatment of this disorder. Achieving meaningful results through that goal start here. I’m tired of seeing so many people suffer. I’ll say up front, I don’t have a clue if this will help anyone else. It may be the hardest I’ve worked on something that has little value, but I have to try. This list is far from comprehensive and will be added to over time, but it’s a start.
These recommendations are based on conclusions I’ve arrived at through evaluation and tracking of my own personal condition. I know that my pressure symptoms are directly related to how much blood is flowing to my brain. Above a certain point*, the veins that drain blood from my brain can’t accommodate the amount of blood flowing in via arteries. I have no idea if I have any CSF “imbalance”** aside from when it all drains out of my shunt when blood flow to my brain hits that critical mark. Everything here is based on the concept of reducing the demand for blood flow to the head beyond normal, and attempting to maximize the very tricky nature of how veins drain blood from our brain. And everyone, I’m not a doctor; I’m a patient just like you. I’ve had a rough time after my shunt, but I’ve learned some things as a result. I do this in service of God, praying that this information might make somebody else’s life easier. Please don’t do anything here that your doctor has told you NOT to do.
Here we go:
- COOL YOUR HEAD/BODY The brain does not like to be hot. Heat, especially when combined with humidity, cause your body to demand more blood to run through the brain in order to carry away the heat. Of course, heat taken from the brain is radiated away through the skin all over your body, so the more of “yourself” you can cool, the better. Try these “easy” things first, based on where you what’s available
- COOL SHOWER/BATH: Whichever you prefer, or is necessary depending on your equilibrium. The water does not have to be cold, just cooler than your body. Make sure to get your hair wet. Refresh with cool water as needed. It’s not rocket surgery.
- ICE TOWEL: soak two clean towels in water. Wrap them separately in saran wrap. Put one in the freezer and one in the refrigerator. Wait for the towel in the freezer to get cold, maybe a little stiff, but not frozen hard. Take it out and put the towel in the refrigerator in the freezer. Wrap the towel you just took out of the freezer over your head, neck, and face. Be careful that the towel is not so cold as to give you frostbite. Leave it on for 15 minutes while reclining at about 45 degrees in a chair or against some pillows. When that towel is no longer cool enough, rotate with the other one. Of course, don’t leave them in the freezer long enough to turn to ice logs.
- FAN/WATER MIST: Sit in front of a fan, again preferably reclined about 45 degrees. The bigger the fan, the better. You’ll need a pump mister that puts out a fine mist. Expose as much skin as modesty dictates, and spray your hair, face, and body with the water mist. Let the fan evaporate the water from your skin. Repeat as needed. If you’re in a public place where stripping down and spraying yourself with water might be frowned upon, there are misting bottles with attached fans that you can use on your face/head/neck as privacy allows.
- EVAPORATIVE FABRIC HEADGEAR I loved these thing last summer. Go to Amazon, type in “Mission Multi-Cool”. I have several. I don’t necessarily endorse the mission brand; I have several of different brands, and they all seem to do what I need them to do: keep my head cool. Get them wet, preferably with cool water, wring them out, put them around your neck, pull them up over your face, or completely cover your head. As the water evaporates from the fabric, an enormous amount of heat is carried away from your skin as well. Carry a bottle of water to refresh them when they get dry. I keep a few in the refrigerator to rotate as I use and launder them. Even just keeping it around my neck helps, and when I can I pull it up over my face. A must have in the ICPDD Warrior Kit
- CUT YOUR HAIR SHORT An extension of keeping your head cool. During the summer, it was the consensus of many members of support groups for ICPDDs on Facebook that short hair helped some feel better. Makes sense, long hair is an insulator and holds heat on your head. I guess this decision requires weighing fashion sense with desire for comfort, and it’s a “semi-nuclear” option because you don’t know what degree of comfort you will get until you do it. I’ve gone to a military “high and tight”, and I’ve got to say that it helps, especially when I’m using iced towels.
- AIR CONDITIONING AC removes humidity from the air in a room or home. Dry air carries away moisture from your body more efficiently by allowing evaporation of sweat or the water you just spritzed on you. I’d suggest that anyone with an ICPDD have air conditioning in at least one room, especially the bedroom.
REALLY BOLD STUFF
- SEEK HIGHER GROUND A temporary measure I employed in extreme situations. On several occasions this summer, weather conditions combined in a way that aggravate my ICPDD to the point of intolerablility . Even indoors I was miserable. Heat, Humidity, and High Barometeric Pressure were the evil triad for Trina and I. As fortune would have it, my mother lives in the mountains 100 miles to the east at an elevation 1000 feet higher, so when weather made conditions in my head intolerable, we went to visit Mom. Geography and elevation combined to reduce heat (approximately 10 degrees F per 1000 feet elevation) and barometric pressure (30-40 millibars, or mb. Note that this equates to 300-400 mm H2O…a very significant amount of pressure). Unfortunately, Virginia summers make humidity almost pervasive in this area, so we could rarely escape that, but the change in elevation gave the most relief. The downside is that my body would accomodate this new elevation after 2-3 days, so I would only do this when I was desperate. There was also the fact that we had to eventually go back home, possibly back to the same conditions I had fled from. Worse, after my body had accomodated to the higher latitude/lower pressure, returning to the opposite conditions was occasionally very unpleasant, but that few days of relief seemed to always give me a much needed break.
OXYGEN Two things about this: I’m just at the point of investigating this (see Sleep Therapy Section), AND you should talk to your doctor first about this. The only way to find out if Oxygen Therapy will work is trying it. Oxygen plays a major role in reducing cerebral perfusion, or blood flow to the brain. Oxygen therapy is used to treat migraines, cluster headaches, and other headaches known to be caused by high blood flow to the brain. Low oxygen tension in “thing” air at extreme altitudes is what triggers Acute Mountain Sickness, or Altitude Sickness, and its extreme and possibly lethal consequences, High Altitude Cerebral Edema (HACE) and High Altitude Pulmonary Edema (HAPE). A current theory exists implicating ongoing elevated ICPs can continually trigger migraines one after another. Oxygen is one of the most therapeutic drugs available, but needs to be used properly. Some health conditions preclude use of concentrated oxygen, so checking with your physician is recommended. Health Insurance may cover the cost of Oxygen Therapy; a visit to your doctor may save you a lot of cash.
Or at least make a dent in that amazing “Deductible” your insurance plan has.
It is available in canisters from Amazon, convenient for use or trial purposes. At $27.99/can, you’re paying for convenience. As I said, I haven’t used these yet, but just hit “Buy It Now”, and I’ll get back to you in a couple of days.
“OH-two” can also be delivered by oxygen concentrator/generators, available in “portable” and “home” versions. These devices compress atmospheric air, remove nitrogen, purify the gas, and deliver oxygen that is ~85-95% pure depending on flow and other factors. These devices are expensive, but in the world of chronic pain that can be associated with ICPDD, they may prove to be literal lifesavers. In literal 20/20 hindsight, I realize the one treatment I never tried for Trina was oxygen therapy, and that shoulda/coulda gnaws at me.
But, hey, I’m just a disabled dentist with a hole in my head. What the heck do I know.
Only what I’ve learned from this incredibly disabling shunt that has both relieved a number of neuroendocrine disorders and a lot of fibro pain – at least until end of June when it and my personal physiology decided to part ways.
And that’s why we’re here.
Last thing, at least for today:
SLEEP THERAPY – NOT AN OPTION
The previous measures discussed so far are more aimed at relief of immediate symptoms. Now we need to look at a very important interceptive/preventive measure that is aimed more at long term control of not only ICPDDs but other significant health issues as well: Sleep Disorders. There is an intuitive link between Sleep Apnea and ICPDD, but the research at this point is limited and inconclusive.9,10
Doesn’t mean there isn’t a link, but if I had to guess…and in the end, ICPDD or no, Sleep Disorders carry their own serious issues.
I can’t emphasize this point enough. If you have an ICPDD and have not had a Sleep Study to check for a Sleep Disorder, a critical part of your potential treatment may be overlooked. There is a clear link between IIH and decreased levels of oxygen and increased of CO2 in the blood. Our bodies can store a certain amount of oxygen in the tissues for use when the need is high. There has even been some evidence that resolving sleep apnea can resolve symptoms associated with IIH10
During sleep, our bodies assume a lower level of activity. Breathing, heart rate, blood pressure all drop. So, to, do reserves of oxygen, especially in the presence of a sleep disorder that can range from light snoring to severe sleep apnea where breathing actually stops until CO2 levels build to the point that the patient wakes up, gasping for oxygen “rich” air – possibly several times a minute.
Proper diagnosis of a Sleep Disorder currently requires a “Sleep Study”, where you are taken from a familiar environment to a strange one, with a strange bed, have all sorts of wires and bands and sensors attached to you, cameras aimed at you, and told “go ahead and go to sleep”. Home sleep studies are becoming more common; your doctor prescribes such a study, a monitor kit is mailed to you, you follow its directions at home, send the monitor back, and results return to your doctor.
However, if you have a smartphone and about $31.99, you can get a very accurate idea of any sleep disorder you have. I need to warn you, it might scare the heck out of you. Even if this has no effect on your ICPDD (not likely, IMHO), sleep disorders are also linked to increased blood pressure, stroke, type II diabetes, cardiovascular disease, weight gain, and other serious health disorders. By the end of next week, you can do a self-diagnosis that you can take to your doctor.
I found this fingertip oxygen sensor on Amazon for $31.99 It records oxygen levels all night, and the results can be downloaded to a computer the next day. It also has an alarm that can be set to go off if your blood oxygen level falls below a certain level. My O2 level at rest is about 98%. I set the alarm to go off at 89%; it woke me up 6 times that night.
As a reference, if I were supervising a sedation and the patient’s O2 level hit 94%, I would start to be alarmed. 89% is danger territory.
Next tool is a phone app called SnoreLab. It is designed specifically to record snoring, loudness, and duration. You download and install it on your phone (last I knew it was a free app), perform the setup, hit “start” and place your phone face down next to you in bed. Next morning you hit “stop”, and you’re presented with a graph showing when you snored, how loudly, and you have the ability to listen to see if you stop breathing…also called sleep apnea. If you do, or if the oxygen monitor shows significant drops in oxygen levels during the night, you need to take this information to your doctor, continuing the monitoring process as many nights as you can until your appointment.
Based on the results of this oxygen monitor and SnoreLab, I recently purchased an adaptive CPAP machine. Recent events have precluded me from putting it to use, but tonight, 11/9/2017, I’m going to start using it. I’m also considering adding an oxygen generator. I’ll let everyone know what the results are. Regardless of my results, I strongly encourage anyone with and ICPDD who has not already had a sleep study to at least try this relatively inexpensive but potentially hugely important test to see if you possibly have an ICPDD. If you do, run, do not walk to your physician with the handy printed results. Let everyone know how what the result of any treatment is on your ICPDD via this group data mining, and maybe we can make some serious progress into treating this disorder.
There are a few things I can do that involve prescription medications, but I am not exactly sure how to present that. Those will require an entire page unto themselves. There is controversy about how certain medications might affect ICPDD patients and possibly give emergency relief. When I am comfortable presenting this, I will put it out there. Until then,
The Shunt Whisperer
Longing for Leloo
Nov. 9, 2017