Yvette’s Question

“Does moving to a sunnier, dry climate at higher elevation help? Or maybe to the coast to help alleviate the barometric pressure? Or is there no escape?”

 

I received a question from Yvette on ShuntWhisperer:

“Does moving to a sunnier, dry climate at higher elevation help? Or maybe to the coast to help alleviate the barometric pressure? Or is there no escape?”

Short answer: Yes.  Heck yes, there is escape.  I started doing something similar last summer, moving to higher altitudes/lower barometric pressures to escape the oppressive heat/humidity of Central Virginia, conditions that were robbing of my ability to function.  I continue to do so as needed, finding that driving to and staying in an areas a mere 1000 ft higher with a barometric pressure 40 or more millibars lower changed my condition like flipping a switch.  It was uncanny.

Let me elaborate on why certain areas might be beneficial for ICPDD sufferers.  Most of us are puppets to changes in barometric pressure that accompany normal weather changes.  Any neurosurgeon/neurologist that tells you that barometric pressure cannot possibly affect ICP is ignorant in a a dangerous fashion, IMHO.   Barometric pressure changes are very significant; as an example, here in Virginia, the barometer changes 20-30 mb (millibars) every 7-10 days as weather fronts pass through.  Looking at the significance of that change, we find that ONE millibar is the equivalent of TEN mm  of water; thus, a change of 30 millibars exerts an increase on tissues exposed to air pressure of 300 mm H20.  Now, look at the area of tissues exposed to this pressure: skin and the lining of the lungs are the chief areas.  The average person has a surface are of skin of 15-20 square feet.  The lungs, however, have a huge surface area of tissue, 80-100 square YARDS, translating to 720-900 square feet; add in the surface area of the skin, and we can safely assume an affected body surface area of up to 1000 square feet.  That barometric pressure change of 300mm water per square inch from a mere weather phenomenon converts to a “mere” 0.428 lb/square inch, or 61.6 lb/square foot (!).   Apply that to the area of the skin and lungs, and this change in weather causes a change in pressure on skin and lungs of…1000 square feet of tissue filled with blood vessels being pressed against the body with a force of 0.428 lb/square inch, 61.6 total lbs/square foot, and:

61,600 lbs of total pressure exerted on the 3000 square feet of skin and lungs.  At the high end.  Variable of skin area to body volume enter, but this is significant.  It raises intra-abdominal and intra-thoracic pressures, condition known to decrease vascular drainiage from the skull; ICP increases and Starling Resistor functions become factors…all of it bad for ICPDD patients.

Ultimately, I believe these changes affect the dynamics of blood sequestration inside long bones and the skull.  Blood and other fluids are pushed from the vessel in the skin and lungs and end up trapped in areas where atmospheric pressure doesn’t reach. Teeth as well, if you want to be technically accurate.  Is this the mechanism that affects our symptoms?  Not certain, but it is a good argument, because almost every ICPDD patient relates that their ICP varies directly with changes in barometric pressure.  Shunted patients have a different sent of symptoms than non-shunted patients; increases in barometric pressure cause increased CSF flow out of my shunt.

Now let’s throw in another wrinkle: atmospheric infrasound.  Severe weather systems produce very low frequency pressure waves that can travel hundreds of miles at hundreds of miles an hour.  Infrasound is known to be deleterious to  physical and mental human physiology.  Last summer, after I got my shunt, I had just begun to make the connection between barometric pressure and my symptoms, but I also noticed something else:  there were times when I would feel badly when there was a severe storm approaching two to three days out.  This was well before any changes in the barometer associated with these fronts occurred.  I remarked to Trina there was something about these storms, especially those with severe thunderstorms and tornadoes that was beating me down, and it wasn’t barometric pressure or heat or anything I could put finger on.  It was worse after my shunt for some reason.  Then I happened across and article on Atmospheric Infrasound and Associated Effects on Human Physiology.   The study set up elaborate devices to measure “sound” too low in frequency to hear, but recognized to affect blood flow, cognition, heart rhythm – pretty much everything in the human body to one degree or another.  Effects were chiefly psychologic, creating feelings of despair, depression, hallucinations, and more.  Changes in heart rhythm were notedFurther, athletic and cognitive performance fell off dramatically as this infrasound became stronger.  I believed this was the source of my peculiar response to storms two days away.

Often, there was always a storm two days away.  But it was the bad ones carrying thunderstorms and tornadic activity that beat me down the worst.

Recently I moved to a location in the isolation of the mountains.  Paradise, to be sure, but at the elevation and location, a lot of winds.  Stronger winds tended to make me feel poorly.  Then, in mid-April, the strangest, strongest confluence of weather factors came together to leave me so sick and weak I couldn’t get out of the chair I was sitting in.  I remember strapping on my CPAP mask and turning on my oxygen generator at 5:30 pm.  I woke up at 7 am.  The storm system had dumped 6 inches of rain in our area and I’m told brought epic lighting.  I don’t remember a bit of it, and I love a good lightning show.  My house has a metal roof, and I don’t remember any sound of rain on the tin roof.    The storm spawned several tornadoes to the south.  I was essentially passed out in my chair with an oxygen mask on.  I managed to screenshot the system before I passed out:

547137554.878800public

Infrasound.

Back to Yvette’s question about moving to an area that might be more suitable to persons susceptible to mere changes in the weather.  The answer is a definite yes, and IMHO probably and worthy of taking a couple of weeks vacation to such a place.  Such areas in the United States are going to be confined to areas west of what is known as the “tornado line”, where cool dry air moving east from the Rocky Mountains collides with warm moist air being pushed up out of the Gulf of Mexico, spawning thunderstorms of epic proportions and of course, tornados.   I had researched where the most stable weather areas in the states were, and the southwest fit the bill perfectly, most especially Arizona with its Medical Marijuana program.  I lost Trina before we ever had the chance to go to Concho for a few weeks to see if improvements in our symptoms would make the move and change in lifestyle worthwhile.   New Mexico and Nevada also seem to be areas of opportunity, with changes in barometric pressure a mere 5-10 mb every two weeks as opposed to the average 20-30 every 7-10 day cycle we were seeing here in Virginia.  As far as coastal areas are concerned, I’d say it depends on whether a person can tolerate the higher barometric pressures seen at sea level, and if the coastal area is in a stable area with regards to weather.  In short, ICPDD patients all have different phsyiologies; shunts/stents further complicate the picture.  As far as I’m concerned, I’m ready to go live anyplace that works, even if it means being a migrant nomad, sleeping on a cot in the back of machine shop, pushing a broom and emptying trash in exchange for a degree of improved physical comfort.

My ICPDD has taken everything from me except for my life.  Some days I sincerely wonder if that is the day that something pops/kinks/blocks/clusterforks and I’m off to maybe see my sweetheart again.  Until then,  I’ll continue putting my experience and research here.  Right now I’m extremely interested in infrasound, and a quirk in its properties that would allow merely wearing headphones with music to cancel it out.  Not sure yet, but right now a mix of Jack White/Lynyrd Skynyrd/Gangstagrass beat in my tinnitus ridden ears, and I feel as good as I usually feel.

I’m going to head to Eastern AZ later this summer once I work out the AirBnB and how to get there on the cheap.  Maybe FedEx myself in a large box.  At any rate, Yvette, Yes, moving to a different climate, probably dryer, cooler, higher in elevation, with boring weather patterns, does seem to help ICPDD patients.  Dr. Kenneth Liu at Penn State Neurologic Services in Hershey, PA, told me at an appointment earlier this week that some of his patients have relocated to AZ for its climate, with satisfactory result.

More will come.  The more I research the topic of infrasound, the more convinced I become of it’s significance to ICPDD patients.  I told another contact I was at a point where I need to start a MindMap, as I believe I may have found another piece to the puzzle of ICPDDs vs. Weather, a piece called density altitude.   All this is little more that intuition and gut feeling trying it interpret what I’m personally experiencing. In the meantime,  I’d like to ask for prayers as I leave the house where Trina and I lived for a different place, picking through the pieces of our life together cut short by her ICPDD.  Prayers and comfort to all, and prayers to our doctors for insight, compassion, and vision as they seek to treat a condition that seems completely elusive and not as rare as it represented to be.

 

The ShuntWhisperer

In service to God, in memory of Trina; may these words help others.

You’re always in my heart, sweetheart.  I miss you every moment.

 

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19 thoughts on “Yvette’s Question

  1. Thank you seems too simple to tell you how grateful I am for your articles. GoOD luck to you. Your wife is in my mind and heart. May she rest knowing how loved she is. Be well

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      1. I have a shunt for raised ICP, following a long problem with a CSF leak and final fix, 2 and 1/2 years later. I live in NW Florida, and suffer from symptoms here, but not at altitude in Arizona, or in the UK. I could not explain this weird situation. Now reading this blog I don’t think I am crazy any more. A move has to be in my near future.

        Your answers to Yvette made my day, well, maybe even the rest of my life, I am 62 and have been unwell for five years. I now have hope that there is a good future to be had.

        I am so sorry for your loss, makes the suffering so much worse I am sure. Keep strong.

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      2. Ejanei, thank you for your kind words. I’m touched by how this simple blog has resonated with so many living with this disorder. I believe the UK shares the same stable weather pattterns as the Southwest US, albeit differently. I pray that a move is helpful to you, and that you find relief wherever you decide to relocate.

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  2. Thank you for the reply. Very interesting and helpful. My research has taken me in a different direction but the weather problem is always on my mind. Especially at times like right now when winter is ending and summer is starting. It’s like night and day difference for me. I go from bed ridden to as normal as someone can be after being bed ridden all winter.

    Sent from my iPhone

    >

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  3. Renee, I”d love to collaborate with you on your research; I’ve discovered the direction of research is an illusion, and there are more than one door to any room.

    Bedridden in winter, “Normal” in summer. A wealth of information there, but exactly what that information is depends on your particular, personal disorder, ie are you shunted or stented, what you symptoms are. There are significant changes in human physiology to seasonal conditions such as temperature that can affect ICPDDs. If you would care to post more information about your condition here we can dissect it for the benefit of everyone (#CROWDHEALING), but I will send you my personal contact info if you want to share anything more privately, and of course, you have every right to not share anything. In any case, prayers to you for a “normal ” summer; perhaps there is a way to give you “normal” winters as well.

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  4. Wow. Very insightful. I’ve been on a long journey trying to figure out a weird constellation of health problems. The weather is huge. Just huge. I think you said in another post, ” the barometer dictates my life.” Absolutely true for me also. My life is demolished by pain and loss of function. A neck injury ten years ago led to fusion surgery, which helped for a few years. Gone downhill now, though, especially since last summer. Pressure problems in skull, leaks, massive head pain, both low pressure and high pressure. Massive neurological symptoms and cognitive problems. Like someone ripped away my identity. Often feels like my brain has been wrapped in wool and thrown into a dark hole. Like being lost. And in constant pain. Nothing left of the self except horrific pressure and pain. Cut off from all the simple, wonderful beauty of life. It’s there (the lush green of ferns, the deep bright voice of the moon, my children’s faces), but I can’t get to it, can’t access it. I can see it all, but I’m cut off. Trapped in a hell of suffering. My faith, which was vibrant and rich for so long, has been reduced to a tiny thread. A tiny, unbreakable thread. Where is Jesus? I used to sing all day to Him. Can’t sing anymore. The pressure it causes–too much.

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    1. Dana, your story is all too common. Once intracranial pressures become elevated to a point where brain structure itself becomes distorted, so too do the functions those areas control become distorted. This is most commonly noticed in damaged optic nerves and flattened pituitary glands; so why not any other functional area of the brain that line the ventricles such as the hypothalamus (HPA Axis Endocrine Control), the Suprachiasmatic nucleus (sleep cycle); the Amygdyla (emotional processing) and others? The symptoms of increased intracranial pressure are a laundry list of the dysfunction of these areas.

      Nonetheless, the ability to treat this pressure is available. I don’t know if a lumbar puncture has been attempted for you to measure your pressures/assess the temporary result of removal of a large volume of cerebrospinal fluid; it is usually an early diagnostic test.

      If you have had a shunt or stent, it may need assessment and adjustment. I suffered hideously low and unstable ICPs the first 6 months due to a leak around the catheter into my skull – after that healed in with enough tissue and bone, it stabilized and has now actually been giving me high pressures again, which I’m attempting to manage with Diamox until a better solution acan be arrived at. There are measures that can lower ICP that you can try. Short term, oxygen therapy can reduce blood flow to the brain which can help if your pressure has a cerebrovascular component. Acetazolamide/Diamox if you can tolerate it. Riding in a car to a higher elevation – the combination of movement to compress/release the spine along with lower barometric pressure seems to bring me relief.

      I have experienced at some point early in my IIH journey everything you have mentioned. That was 11 years ago. No doctor thought to look for it. An MRI from 2010 taken for pain in my neck shows Empty Sella Syndrome, but was never mentioned in the radiology report. Like you, a neck injury in 2007 started this process; fusion surgery in 2011 put me in bed for three years. All, I’m now certain, due to IIH. A shunt last year is finally not leaking. Truthfully, if my doctors had listened more closely to my complaints, I might have had an easier course.

      Hold onto that faith. I remember days last year when I could barely move due to overdrainage, holding Trina’s hand and saying the Lord’s Prayer over and over – my two anchors. Now I only have God; Jesus is there; think of him, think of your children, and find talk to your doctor or find another. Prayers to you for comfort and peace.

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    2. It helps to know that you are not alone Dana, I was immensely helped reading this blog, as no matter how we got here, we seem to share a common problem, that being, raised intracranial pressure. We have all had different, odd and complicated medical issues/injuries which have brought us to this point. Mine started with a failed epidural injection for back pain, that left me with a CSF leak for three years. after multiple blood patches, three lumbar surgeries, three cranial surgeries I finally found the right person to fix the leak. For anyone who is looking for where to go for a permanent solution to a leak THE expert is Dr Linda Gray and her team of interventional neuroradiologists, at Duke Medical Center. six months after my leak being fixed I ended up with a shunt as I now had raised intracranial pressure. After so long with a leak I think my producing area could not use the usual feed back mechanism and just kept churning the stuff out.

      I am in complete agreement to The Shunt Whisperer’s reply to you about all the different areas of the brain being permanently damaged. I can concur, as my blood sodium level is very low, so I have to throw loads of salt on my food just to keep my blood level at a low “normal”. I think mine started with being low for so long, and now it is perpetuated by being high. Sadly there seem very few in the medical world that truly understand what is actually going on in our brains. The best help I have had has been from a couple of blogs, and most especially this one.

      I never found Diamox very useful, and as I read The Shunt Whisper’s story I realized that Lasix might be more helpful, as it reduces overall cellular fluid retention. Fortunately I had been prescribed some Lasix several years ago and so I tried it. I am experimenting with dosage, but I think I have worked out what is helpful without drying myself out like a prune.

      I had my shunt put it in during 2016, but still had problems with either low or high pressure headaches depending on the setting of my shunt. In early 2017 it failed so in May 2017 it was replaced with a different type of shunt, one that has many more settings. Still I am either too high or low.

      I have twice been to Sedona, AZ in the past year and I feel pretty much normal there. It is at about 4,500 ft, and the air is dry, barometric press lower and more stable. I live at sea level in NW Florida and the humidity if terrible. Barometric pressure crucial for me and I think it is a combination of those two things, and in particular the frequent fluctuations of barometric pressure here that make life so difficult and finding the right treatment so hard. In a few weeks I am returning for a short while to Arizona, and I will definitely check back in here to let you know if I really do feel better here.

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      1. ejanei: I serendipitously ran across this article outlining factors that affect CSF production. It’s a long, “science-y” read, but it not only confirms your thoughts, but one of mine as well: the wisdom of treating non-hydrocephalic ICPDDs by reducing or diverting CSF using diuretics, shunts, and the like. Prayers to you and your doctors, for comfort, empathy, compassion, and listening.

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      2. I have just returned from 6 days in Tucson, where it is the stormy season. The barometric pressure was around 27,000 inHg ish. it did not fluctuate. It took me 4-5 days to adjust, but I managed without Lasix and anti nausea meds while I waited to adjust, to it was getting more tolerable all the time. I then felt great until I came home to NW FL and I am back to the same old thing. Evenings are the worst. The pressure right now 30,000 inHg ish and has increased during the last 24hours by 1,000 inHg.

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      3. You and I are are sharing similar experiences. I traveled to the Mayo Clinic in Rochester, MN on July 17. I was exhausted from a month of exactly what you are experiencing in Florida. The weather here has been sunny and cool, and with the exception of one afternoon when a line of severe thunderstorms moved through, I’ve been feeling better than in the last two years. The evening of the thunderstorms, however, made me so weak and lightheaded I could not get put of bed from 3pm that afternoon until 5 am the next morning – this always happens with severe storms.

        Besides barometric pressure changes, increased temperature and humidity, I am beginning to suspect infrasound is the other factor that affects me/us. This is very low frequency sound generated by colliding air masses. I found a phone app called RedVox that can measure it. It has taken me two months to learn to read it, but I can now identify pattern of one complete wave every 3 minutes, and the amplitude of each wave is 12-20 mb, the equivalent of the barometric pressure change with a normal storm pattern that would affect me, but its happening every 2-3 minutes. How it is making me ill I don’t know for certain, but I’ve found that there is a resonant frequency on our circulatory system that is about the same. and when I am subjected to that infrasound, my heart pounds in my chest and I am forced to lie down. I’m reworking the site now, and will include this as a topic. Prayers to you, I am glad you had a reprieve in AZ, so sorry it’s back to the same thing. FWIW, I’m not leaving Minnesota until the weather in VA cools down.

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      4. BTW: when I flew to Rochester, I felt GREAT at 30,000 ft/ 890mb cabin pressure (oxygen enriched). When we descended, I could feel the pressure build and my shunt open ip and start to drain. The first 36 hours were tough, but I adapted rapidly. Did you fly? How did you fare?

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  5. Thanks to you both for encouragement and information. Regarding the Duke program, I recently sent all my imaging and records to be evaluated by Linda Gray’s team. It’s amazing how little most clinicians understand about csf pressure problems. As my situation comes into focus it appears highly likely that my pressure problems are related to a bigger issue, that of HDCT (Hereditary Disorders of Connective Tissue.) I’d never heard of such a thing, but the screening tools and diagnostic criteria raise red flag after red flag for me. Genetically faulty coding for connective tissue proteins can affect a wide array of systems and structures. Everything from ligaments to eyes to GI function to heart valves, and, yes, the meninges. As you may know, the Duke program is one of only three major centers that specialize in CSF leaks, Cedars-Sinai and Stanford being the other two. Dr. Sheveink at Cedars-Sinai believes most people who develop spontaneous leaks have an underlying genetic connective tissue disease. Dr. Ian Carroll at Stanford emphasizes this link as well.
    I wonder if anyone else here has features of, or is diagnosed with, a genetic disorder of connective tissue such as Ehler’s-Danlos or Marfan’s?

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  6. ejanei: How long ago was your failed epidural? When you finally got connected with Duke do you recall how long it took for them to review your records before contacting you? I know they receive queries from potential patients all over the world. Sent my stuff several weeks ago, waiting patiently for a phone consult. I know from speaking from with the patient coordinator that, once accepted as a patient, appointments are four months out. It really is staggering how little local doctors know about csf pressure problems. Hopefully this will change and there will be more options for highly skilled specialized care.

    I also wondered after rereading your post if you had multiple leak sites? Both cranial and spinal?

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    1. I am sorry to be so slow to reply. My problem started on May 30th 2013. I too sent all my information to the team at Duke, and I can’t remember how long I had to wait for my phone consult, I think it was a few weeks, so be patient. I then waited I think around 6-8 weeks for my actual appointment for my myogram on day 1 and then patching on day 2. Once you are in the system they are very contactable. I seem to recall that they suggest they you are there for perhaps a week in total to make sure all is well before you can leave. We had to drive from NW Florida, as I could not fly because I had blown my very first blood patch by flying. I would imagine that they recommend patients do not fly, but that was just my personal opinion. If in doubt ask them. I know that I had to wait about 4-6 month after my Duke patching to try a short test flight. It was fine. Again, they have all the answers, ask, ask, ask.
      On a slightly different point, you might ask them how they bill and check with your insurance company about payment. My insurance, BLBS of Florida, would only pay for one of the blood/glue patches, and I had 7 in total all in the same session. This left me owing $3,000. I argued back and forth with Duke and BCBS and got nowhere, finally I was sent to collections and I am paying it off $25 a month. They tell you you have to pay it off $1,000 every few months, but if you offer them what you can afford, I think they will take it. A lot of money, but to stop the leaking worth it.
      I hope this helps.

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    2. I am sorry, I missed the second part of your question. No, not cranial and spinal, just spinal. However there were multiple holes in the same site, as the doctor who performed the steroid epidural did a very poor job, and repeated pushed very hard and as as result, we think I had multiple holes that went all the way though and out the other side of the dura, probably off to the side otherwise I might have had permanent damage to my spinal cord. The reason they did 7 blood/glue patches was to get the mixture 360 degrees around my dura so as to account for an occurrence such that I had.
      I was tested for connective tissue disease and that was negative.
      We had at one time thought that perhaps, I had a secondary tear in my cervical neck area, because I had such awful pain in my occipital area. I even had a regular blood patch there. I still cannot comfortably lie on my back as the pain in the base of my skull is pretty bad if I do. We have no real explanation for that.

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      1. Hi, I have just returned from nearly 4 weeks in Southern England, right at the end of the heat wave. I felt very well for the first few days and then the pressure started to fluctuate, I was just as bad as I am in NW Florida . I took a great screen shot from my phone barometer to show you, but I can’t see a way to post it here.
        Whilst over in the UK, I spent 48 hours as an inpatient with a small bowel obstruction that I am sure was caused by the shunt tubing wrapping itself around my bowel. Thankfully it resolved with 36 hours, but we missed the Norwegian Fjord cruise for which we had gone over! Last summer, again whilst over in England I developed a CSF Pseudo cyst on the end of my tubing, a very rare occurrence and spent a day in a local ER. Fortunately, I was able to return to the US for surgery to remove it, and recovered quickly.
        We are moving to Tucson in December, can’t wait. I am very lucky that my husband has been able to get a good job there. Not what we were expecting to do in our early sixties.
        Hoping others, including you, are doing well.

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