Progression of MY Barometric Pressure Headaches (Not MOH BTW)

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shurluk
New Member


Date Joined Jun 2009
Total Posts : 5
   Posted 6/14/2009 10:32 AM (GMT -6)   
I am sensitive to weather change (barometric pressure, wind...ect). I have this neurological condition that I pray often will be taken away from me. I have had this condition as far back as I can remember. I thought then it was allergies and sensitivity to Mold count. I drew to this conclusion by looking at the reported Mold Count in the weather section of the daily newspaper. We did not have PC’s or the WEB back then. I believed I had very sensitive sinus reaction to these “Allergic” attacks due to very bad sinus drainage. All my life I have had copious sinus drainage that caused sore throats and other issues.

This went on and on then about six years ago became more frequent. I was seemly getting what I thought to be sinus infection about every 3 months. When these perceived infections came on I would suffer with them and eventually go to the doctor where he would push around on my forehead and say it must be a sinus infection. I would take antibiotics which I noticed were always very slow in “helping”. I eventually got so bad and frequent my Doctor ordered a “CT Scan” of my sinus.

It was after this I found out that my sinus was perfectly clear. The ENT then told me I had “Facial Migraines”. I then was referred to the Neurology department and began a series of medication in the hope of decreasing my attacks. I experienced some life threatening side effects (Increased Heart Rate) and also they did not help decrease my attacks. They keep becoming more frequent as my sensitivity to weather changes increased.

I was on Effexor for a year and it was of no help and infect they continued to increase. I read that Effexor can do the opposite of what you want it to do sometimes. I read it can make Migraines worse at times. I went off Effexor cold turkey about a month ago. I was not pleasant but I did it.

So my “Facial Migraines” have been steadying increasing long before I began to use Vicodin to help have some kind of life. I got up an hour ago after being in bed with a migraine for about 14 hours. I could not stay alert for the “Lakers” game and thus missed it. Being forced to sleep through a pain episode is really not a bad thing. Me being in pain in my dreams beats having couscous pain all the time.
I have not taken any pain medication since getting up even though I feel poorly. I do not have a bad headache now nor do I most of the time. My head aches, sure enough, but my whole body is so weak and achy the head ache pain is overridden somewhat from my overall condition. I will take pain medication (2 Vicodin) to take the edge off the pain. It won’t go away but helps.

I am a migraine suffer who is not being helped by the normal medication offered by the neurological community for migraine. Most often they stay this is due to “MOH” if any pain medication is being used. They refuse to believe there are some migraine suffers who can’t be help by the prescription they hold so dear and effective. The nurse practitioner of neurology I was seeing was so against taking any pain medication ever it was ridicules. She must have been addicted, at one time in her life, to prescription pain medication. She was like a reformed smoker in regards to pain medication use. I truly feel sorry for her patients who are not being helped by her prescriptions and are forced to live in pain.

I just want to state that MOH is not always the reason someone is not helped by other drugs. The medical community can be “open minded” to this concept if just a little effort is put forth. If there open minded they will take the time needed to determined if the pain medication use is the culprit or not. Most I believe at the moment just assume if you’re taking pain relievers that is your problem. They won’t except that it is really providing some relief from the real problem which is the Migraine.

DadofPainboy
Regular Member


Date Joined May 2009
Total Posts : 45
   Posted 6/15/2009 1:33 PM (GMT -6)   
I hope your ENT sent his little flexible scope up there to look around and didn't just rely on the CT. I had a CT of my sinues which the radiologist decribed as 'septum at midline, no problems'. Then the ENT tried to get his scope up there to look and he could not get it past the septum it was bent so much to that side. Not five seconds after trying to thread it up there he exclaimed 'Sheez! That's why sinus CT's are useless!!'. He then went to look at the CT himself and didn't think it showed any problem, he just shook his head and scheduled me for a septoplasty. I'm looking forward to being able to breathe like normal people and have fewer infections and headaches.

Second regarding your case you might consider groups of doctors that work on your sort of head pain toward the face there. These head pain clinics don't have so many neurologists, but have dental surgeons, ENT's, anesthesologi over against the more general neurologists, those groups do what amounts to carpal-tunnel release surgery on the facial nerves. The pain clinic unit at Cedars-Sinai in Los Angeles is such a group.

Third, my son has head pain that is ferocious and lasts for days when the pressure drops quickly or when it is very high. When it stays in the 'San Deigo / Honolulu' narrow band for several days he is often pain free. He too was not helped much by more or less the entire pharmacy after trying a long long time and now they are looking for leaks of spinal fluid.

You can read online of people who were more or less given up on after years of visits and trying this and that until one doctor who spent more time on facial pain found a problem with a nerve complex just rear of the nose-- they fixed it and that was the end of his headaches -- after years and years.

Rule #1: Don't Give Up.

Rule #2: After a doctor has tried his best three ideas, if they are local then ask them to help manage your case and if they are not then try a different facility elsewhere. Notice that many people have had good and worse than useless experiences at even the best name places, so keep looking.

shurluk
New Member


Date Joined Jun 2009
Total Posts : 5
   Posted 6/15/2009 3:52 PM (GMT -6)   
Thank You

Well thought out and meaningful information. I especially like the concept of maybe getting the nerves right in the middle of my forehead above the nose worked on. The head pain I do get is focused there. Before the "BP" started rising today I was taking my elderly mother to the store. I felt decent at the time but within 10 mins I broke out in a cold sweat which fogged up my sunglasses. That precedes my other neurological symptoms most of the time. The overall body illness and pain kicks in right then as well. You can go from feeling OK to feeling real bad in a blink.

DadofPainboy
Regular Member


Date Joined May 2009
Total Posts : 45
   Posted 6/15/2009 6:55 PM (GMT -6)   
If nobody has measured your spinal fluid pressure yet, that might be something to suggest. Especially suggest this if you get any kind of relief at all by laying down nearly flat but with your head a bit lower than your shoulders, shoulders a bit lower than your waist, waist a bit lower than the legs, etc. Just a bit now not almost standing on your head. Like on a sofa with a few pillows toward the feet and one in the middle and so on. Face up and face down if different is a clue. Not that you should do this for any length of time but it is a real clue for the doctors. Too high CSF pressure is a problem, and too low and your brain sags and it is another kind of problem.  The good thing is it is often fixable and almost always treatable.

The national weather service has a website, you can put in your zip code there and find a link for a three day hour by hour barometric pressure history. Just search on noaa and nws. See whether there is a connection there. Some get headaches during the 12hrs before or as the pressure drops quickly. I mean like quite roughly from 29.9 to 28.8 over 12 hours for instance. Not 29.94 to 29.92 or small changes wandering up and down by bits. Others get it when the pressure is high (30 and up) and stays high for a while. Some both. Some have no connection. It is another clue. If you notice you've been pain free for a whilelook over the past days and see if the pressure stayed steady while you were feeling good. What this is is real data you can print and mark when the headache hits. Nothing like hard data to help good decisions.

I'm glad you mentioned the sunglasses since getting zapped by glare and bright sun is a known trigger for many.

tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 6/15/2009 11:47 PM (GMT -6)   
Great posts Dad!

Shurluk-you mentioned taking 2 vicodin, how often are you taking them?! (I take narcotics and am in no way gonna "jump" on your answer...just curious) :-)

Are you taking any preventative medications now?
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shurluk
New Member


Date Joined Jun 2009
Total Posts : 5
   Posted 6/16/2009 2:20 AM (GMT -6)   
Dad, thank you for an excellent post. I need to look onto the spinal fluid theory and do some of the test positions you mentioned. I remember on one occasion when I had a lot of head pain, as my main symptom, laying down on my back made it worse. Lately my whole body seemly gets involved in the pain attacks. My legs from knees down are tingly and hurt as I type this. Overall pain which includes my head is always with me during an attack.

I have been monitoring a weather site closely for the past year and a half. I feel real decent (80% close to normal) whenever the barometric pressure is holding steady. I can predict movement in the “BP” before it does thru my pain. I wish it took a big “BP” movement to cause pain for me but that is not the case. Soon as, or even just before, the “BP” makes a move one way or the other I am effected.

A downward “BP” most always means head and body pain and weakness. An upward movement in the “BP” causes pain that is over ridden by server sleepiness. When this happens I am forced to sleep and I won’t usually manage to fully wake up until the “BP” levels out. I have been made to do what I call my “COMA” sleeping for as much as 24 hours at a time.

Today decreasing “BP” which went from 29.4 to 28.88 from 11Am to 6PM caused pain at the onset (I took 2 Vicodin) while I was taking my mother shopping. When I got home I was soon also very drossy and in pain and went to sleep for 10 hrs. While I was asleep the “BP” reversed direction. At 6PM it started back up from 28.88 and leveled out at 29.90 at 10PM. It was at 10PM when I was able to bring my self out of my “COMA” sleep. The night before this I had at least 8 hrs.

It is 1AM right now and the pressure is holding steady and I am still in some pain but lot more bearable then when I am conscious during a “BP” movement scenario. My sensitivity to “BP” movement has so dramatically increased during the past six months it is scary. The amount of the body involved in pain and the pain as well has also increased. If it continues to increase I don’t see how I will have any life at all.

I got off Effexor in the hope that since it was not helping it might have in fact been hurting my condition a month plus ago. All preventatives I tried did not work and had dangerous side effects like elevated heart rate. At the moment I have access to 9 Imatrex (generic form) a month and enough Vicodin for 6 a day if needed.

If was important for me to make it to church the past Sunday. I took an Imatrex two hours before church services. Imatrex does a good job of reducing my pain levels for a few hours but does not remove it. When time to go to church I needed two Vicodin to further relieve my pain. I ware two pair of sunglasses when outside, including at church, along with a sun visor. Do to the rising “BP” and the fluorescent lighting I was exposed to I needed to vomit mid why thru my church stay. All part of the life as I know it now. I pray it will get no worse and hope for improvement somehow as I further age.

DadofPainboy
Regular Member


Date Joined May 2009
Total Posts : 45
   Posted 6/16/2009 10:00 AM (GMT -6)   
Only because you've already tried the entire pharmacy, you  *** SO *** need to get your CSF / spinal fluid pressure checked.  
 
Imagine a closed tall pipe with one little drain and one little water supply.   No leaks and you only have problems if the drain and supply get out of whack.   If there is a little leak, it leaks at a rate controlled by the difference between the pressure in the pipe and the pressure outside the pipe.   So suppose the pressure stays steady.  The drain system thinks the supply system is slow and the supply system thinks the drain system is fast.  So if the leak is not too big they adjust and after a while things smooth out.    Then the pressure changes.   So now the thing leaks either a bit slower or a bit faster.   The supply and drain systems try to compensate.  This doesn't happen so fast.  If the overall pressure is too high you get one sort of problem, if the overall pressure is too low another sort of problem.  Then the pressure changes again and you sort of have a moving target there.
 
Obviously if the leak is too big then no way can the supply keep up and you always have a pain problem.
 
Likewise if there is no leak and the drain is too fast or the supply is too slow, same low pressure problem.  Or if the supply is going banannas and the drain is stuck, then a high pressure problem.
 
So, you know, look for a plumber with an MD.   These are called 'neurosurgeons'.  They can evaluate your situation and let you know whether this is or isn't an issue.
 
 
 
 
 
 

Post Edited (DadofPainboy) : 6/16/2009 10:13:05 AM (GMT-6)


catelynnw3
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/27/2009 10:17 PM (GMT -6)   
I am just curious if any of you have ever had an MRI of your spine? I have had chronic head pressure and throbbing headaches for years, and discovered last year that I have multiple cervical spine herniations and bone spur complexes. The neurologist I went to told me he could see on my MRI that the CSF was being blocked from flowing properly around my spine due to these issues. He believed that to be the root of my problem. I have gone the route of allergists, endocrinologists, anxiety medications, blood pressure medication (despite having low bp), cardiologists/electrophysiologists, migraine medications, etc... Currently I am appealing my insurance company to approve artificial disc replacement of two discs. The doctor would like to remove the bone spurs at the same time. I continue to do my "homework" before having surgery done, so I am wondering if anyone might have the same problem. At this point, the pressure in my head is basically always there, but it varies in intensity from annoying to debilitating. The weather seems to have a great impact on how I feel as well.

SMP86
Regular Member


Date Joined Jun 2009
Total Posts : 20
   Posted 8/28/2009 8:02 PM (GMT -6)   
I hate weather-induced migraines! I live on the east coast and we have had a horrible weather year! One day the weather was so bad and all of my medications failed. I called my doctor only to find out that almost all of my doctor’s patients had called him that day with the same problem!

You may want to see a group of specialists... a neurologist who is sensitive to your pain, and a pain management expert. You may need to try some different preventatives, supplements, or even botox if you have not tried. The problem with botox other than it does not work in everyone and you have to find a doctor who knows how to do it for migraines. Also, apparently it takes 3 rounds of it to start working. It’s also expensive but it’s supposed to be approved by the FDA later this year as a treatment, which would mean coverage on insurance.

MOH is usually the easy term doctors want to say...it’s a real thing but it’s hard to tell if you have it. It’s true that some medications just don’t work or they work for a while but then we get older, bodies change, ect and it doesn’t work. There also is a misconception that MOH is your fault or that you are addicted. You may truly be having daily pain and you need your medication. If your medication is not as affective as it once was that could be a sign of moh. If your doctor truly believes you are having MOH your doctor should give you medications that help with the pain to take in the mean time... if they tell you to just bare the pain I would go see another doctor.

Anyway, I’m sorry for your pain. I hope you find a solution! keep trying.

PS I just have to say it because I’m from San Antonio… boo lakers! Go spurs go!
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