blog:bpaddock

The Blog menu on the right only shows the most recent 20 entries. There are a closer to 100 under the “Older Entries” link after each set of 20.

Ehlers-Danlos National Foundation 2014 Physicians Conference Papers Online

The Ehlers-Danlos National Foundation has put several of their conference papers online.

EDS is frequently thought to be an underlying cause of CSF Leaks happening and/or not healing.

~~DISCUSSION~~

2014/09/27 12:43 · bpaddock

Do Genes Play a Role in Chronic Pain?

Do Genes Play a Role in Chronic Pain? by September 23rd, 2014 by Pat Anson.

Two new studies are pointing to a genetic link between traumatic events, chronic pain and post-traumatic stress disorder (PTSD).

One study found a higher risk for PTSD in soldiers exposed to childhood trauma, while the other found that people who experience trauma while living in low-income neighborhoods are more likely to suffer from musculoskeletal pain. Both studies suggest that trauma can “activate” genes associated with chronic pain.

~~DISCUSSION~~

2014/09/27 12:33 · bpaddock

Mike Rowe's thoughts on the ALS Ice Bucket Challenge

Celebrity Mike Rowe's thoughts on the ALS Ice Bucket Challenge are something I agree with completely. This is what I posted on his Time Line as a response:

Mike thank you for sharing your thoughts and research, I agree completely with them, just did not know how to present them. Now before everyone starts the hate replies, please hear me out.

On August 7th 2013 my wife committed suicide, as she could no longer stand the excruciating headache caused by a Intracranial Hypotension, more commonly known as a Cerebrospinal Fluid (CSF) Leaks. A condition that is more common that many think (for example Actor George Clooney had/has a CSF Leak and considered suicide), yet is so unknown that some doctors argue the condition does not even exist.

Karen's CSF Leak came from a head injury. The pain is excoriating. If you do not have the correct among of fluid in the skull for the brain to float around on, things are getting yanked on that were never meant to be yanked on.

People simply do not understand how fragile the head and neck structures truly are. No mater how noble the cause one should not be encouraging things impacting the head and neck structures!

I have no doubt that there have been a few more people added to the ranks of CSF Leakers, whom now have headaches beyond belief and have no idea why, due to having things dumped or dropped on them during the 'challenge'.

Someone did come up with the Blindfolded Brain Freeze Challenge, where you consume something very cold to induce an “Ice Cream Headache”, to show the pain to even a small degree. Alas I do not even support that idea. One should never encourage pain.

Please read Karen's 20+ year struggles to find the cause of her headaches, that turned out to be CSF Leaks. Her story brings everyone to tears. :-( Then you will understand why the ALS Ice Bucket Challenge is a bad idea.

http://www.kpaddock.com

~~DISCUSSION~~

2014/09/07 13:35 · bpaddock

New drug promises relief for inflammatory pain

Those suffering from chronic pain, take note: A new pain-reliever may soon be on the scene that lacks the “high” of opioids and the cardiac-risk of non-steroidal anti-inflammatory (NSAIDs) drugs such as aspirin. The compound reduced inflammatory pain in mice, according to research by a team of Stanford scientists led by Daria Mochly-Rosen, PhD, a professor of chemical and systems biology.

Mochly-Rosen discovered the compound, called Alda-1, more than five years ago while searching for the reason moderate alcohol use can decrease the severity of heart attacks. She found an enzyme, called aldehyde dehydrogenase 2, that breaks down a family of alcohol byproducts, called aldehydes. Aldehydes also cause pain in mice and Alda-1 relieves the pain, Mochly-Rosen said. - See more at: http://scopeblog.stanford.edu/2014/08/27/new-painkiller-could-tackle-pain-without-risk-of-addiction

See also:

~~DISCUSSION~~

2014/08/29 01:44 · bpaddock

Brain Freeze challenge

In an attempt to explain what a CSF Leak, Intracranial Hypo/Hypertension, headache feels like to a healthy person someone came up with the “Blindfolded Brainfreeze Challenge to support IH (Intracranial Hypertension)”, #BBF, which is meant to induce an Ice Cream Headache (ICD-10 G44.8021 “Other specified headache syndromes”).

Eating/drinking something that is extremely cold can cause an, usually, short lived intense headache, when the substance touches the roof of the mouth. The pain can be so intense that it has caused a few people to faint. So don't take the Brain Freeze Challenge lightly, it could injure someone.

Have you ever had one of these Ice Cream headaches? Now imagine that headache ten (10) times worse or more, and does not stop ever. A lucky few can get relief by laying down, so that the CSF builds back up, slowly, over time. Alas the CSF leaks back out when you get up.

~~DISCUSSION~~

2014/08/29 01:17 · bpaddock

Did I create todays electronic medical records mess?

Today when you go to a doctor they spend more time with their back to you typing on the computer, due to government and insurance regulations, than facing the patient seeking their help.

Sadly I frequently wonder if I am to blame? I wrote the software that wrote the very first electronic prescription as I describe in my Software Safety Blog:

When was the very first electronic prescription used? I say ~1978

~~DISCUSSION~~

Tay Baskin Spontaneous CSF Leak Two week Update Post Surgery Part 4

~~DISCUSSION~~

2014/08/19 00:59 · bpaddock

Corticosteroid not FDA approved for Epidural Injection.

Summary of label changes to drugs July 2014. All CORTICOSTEROID products that are currently approved for intrajoint, dermal, and intralesion injection are clearly labeled as NOT FDA APPROVED FOR EPIDURAL INJECTION. This includes depomedrol, triamcinolone, Kenalog, betamethasone and MORE. Any use of this product for such purposes is OFF LABEL. By this definition, all compounded corticosteroid products ARE NOT APPROVED FOR EPIDURAL INJECTION. Compounded corticosteroids used for this purpose are considered to to be EXPERIMENTAL, as they have not been either FDA approved or clinically trialed and lack safety data. Experimental applications are not off label, and they require specific safety protocols under 21 CFR… – http://www.fda.gov/Safety/MedWatch/SafetyInformation/ucm409189.htm

These shots can cause the painful condition Arachnoiditis.

~~DISCUSSION~~

2014/08/17 22:18 · bpaddock

Failed Epidural Blood Patch Now What?

~~DISCUSSION~~

2014/08/16 01:24 · bpaddock

Jumping from a bridge

Hubby has been speaking out about the dangers from this medication since I killed myself, while taking it.

One lady told him that she was standing on a bridge railing ready to jump when she remembered his warning and got help getting of the stuff.

A few people have told him that this medication helped them. A FAR higher number told him about the devastating side effects they experienced from it.

Chronic Pain Suicidal Behavior from Prescription Drugs

Suicidal Behavior and Ideation and Antiepileptic Drugs

Karen was taking this crap, Gabapentin (Neurontin) that is on this list. These are commonly given to people with Chronic Pain, whom are already usually depressed.

Manufacturers of antiepileptic drugs (AEDs) or anticonvulsant drugs will update product labeling to include a warning about an increased risk of suicidal thoughts or actions and will develop a Medication Guide to help patients understand this risk.

This is the actual study frequently referenced to on Internet with no link to the original study as “Neurontin and Lyrica are a Death Sentence for New Brain Synapses”: Study pinpoints key mechanism in brain development, raising questions about use of antiseizure drug

Gabapentin Receptor α2δ-1 Is a Neuronal Thrombospondin Receptor Responsible for Excitatory CNS Synaptogenesis

Çagla Eroglu, Nicola J. Allen, Michael W. Susman, Nancy A. O'Rourke, Chan Young Park, Engin Özkan, Chandrani Chakraborty, Sara B. Mulinyawe, Douglas S. Annis, Andrew D. Huberman, Eric M. Green, Jack Lawler, Ricardo Dolmetsch, K. Christopher Garcia, Stephen J. Smith, Z. David Luo, Arnon Rosenthal, Deane F. Mosher, Ben A. Barres

Synapses are asymmetric cellular adhesions that are critical for nervous system development and function, but the mechanisms that induce their formation are not well understood. We have previously identified thrombospondin as an astrocyte-secreted protein that promotes central nervous system (CNS) synaptogenesis. Here, we identify the neuronal thrombospondin receptor involved in CNS synapse formation as α2δ-1, the receptor for the anti-epileptic and analgesic drug gabapentin. We show that the VWF-A domain of α2δ-1 interacts with the epidermal growth factor-like repeats common to all thrombospondins. – In Cell Oct 16 2009.

Interference with neuronal development

This class of medication interferes with neuronal development at any age. Study from 2016 on prenatal development.

Pregnancy outcome following maternal exposure to pregabalin may call for concern

ABSTRACT

Objective: To investigate pregnancy outcomes following maternal use of pregabalin.

Methods: This multicenter, observational prospective cohort study compared pregnancy outcomes in women exposed to pregabalin with those of matched controls (not exposed to any medications known to be teratogenic or to any antiepileptic drugs). Teratology Information Services systematically collected data between 2004 and 2013.

Results: Data were collected from 164 exposed pregnancies and 656 controls. A significantly higher major birth defect rate in the pregabalin group was observed after exclusion of chromosomal aberration syndromes, and when cases with exposure during first trimester of pregnancy were analyzed separately (7/116 [6.0%] vs 12/580 [2.1%]; odds ratio 3.0, 95% confidence interval 1.2–7.9, p = 0.03). The rate of live births was lower in the pregabalin group (71.9% vs 85.2%, p < 0.001), primarily due to a higher rate of both elective (9.8% vs 5.0%, p = 0.02) and medically indicated (5.5% vs 1.8%, p = 0.008) pregnancy terminations. In the Cox proportional cause specific hazards model, pregabalin exposure was not associated with a significantly higher risk of spontaneous abortion.

Conclusions: This study demonstrated a signal for increased risk of major birth defects after first trimester exposure to pregabalin. However, several limitations such as the small sample size, differences across groups in maternal conditions, and concomitant medication exposure exclude definitive conclusions, so these results call for confirmation through independent studies.

Gralise

Gralise is the new version on Gabapentin. Claimed to have far fewer side effects. I'll still never be a fan of the stuff.



While there may be doctors and links to medical information on this site, a lot of the information here has come from a persons own hard won self education due to lack of support of the Medical Establishment. Independently validate for yourself any information from this site with authoritative sources, as you should do with any information found on Internet.


2014/07/03 12:09 · bpaddock

Added image of a leak

I add someones, was not Karen's, image of a CSF Leak.

~~DISCUSSION~~

2014/08/11 11:59 · bpaddock

Karen's Picture

It will be one year that Karen has been gone from this world on this Thursday August 7th.

I still cry almost every day.

I'm crying now.

I wanted to put a picture of her at the top of her Facebook Page for people to remember her by. I fell she is already being forgotten. Oh so sad. :-(

The blue wolf represents the true Karen, the one that only I had the privileged of knowing.

The world judges to harshly and to quickly on appearance and other such minutia, without taking the time to get to know someones soul. The soul that evolves, no longer the soul of the ugly duckling little sister, no longer the loaner teenager with few true friends, the soul that filled this now empty house, I could sense when she was not in the house, a house now forever empty of that beautiful life. The soul of the self educated intelligent woman that wanted to help so many, gone to soon. I will love you until we meet again at Rainbow Bridge

I love you Karen!

~~DISCUSSION~~

2014/08/06 00:27 · bpaddock

George Clooney has a CSF Leak

Far to many people think what I had is rare. No it is not. The problem is that it is rarely diagnosed correctly. For example the famous actor George Clooney has a CSF Leak. He considered suicde when the leak first started from the excruciating headache, some have described as the “headache from Hell”. As of Sept. 1st 2014, years after Mr. Clooeny's injury he continues to have headaches, that the press mistakenly referres to as 'Migraines'. We really do need to find a better solution than the ones we have right now.

George Clooney Visits Hospital as Back Injury Continues to Act Up Years After Filming 'Syriana'.


My Conversation with George Clooney Tracy Moss Stolarski. May 7, 2012 at 6:19pm

It was one of the most thrilling things I've ever done.

When Ann and I got to the Wortham Center in Houston, we took our seats only to find we were on the 8th ROW…so close and so happy! I had brought all my returned letters, cards, literature, etc with me in hopes of finding a way to get it to George. I could have tossed it up on the stage from my seat!!

We had programs, but I didn't look at mine…I was too busy taking pictures and trying to get a good angle for when George came on stage. But then Ann showed me something that made my heart race…AUDIENCE QUESTIONS. Oh my gosh…I would have a chance to ask a question??? I could not think of anything else…except…you have one question…what's it going to be???

George was “interviewed” by a lady who may have never seen and certainly has never done an interview before. She was not the best but I am sure she gave quite a lot of money to the Foundation for that honor! Good for her. George, on the other hand, was beyond charming. Ann, my best friend, said she wasn't a huge fan before the talk, but now she's in LOVE with George. He has an every man way about him that is disarming, candid, intelligent, funny and honest. You cannot help but love him.

Lo and behold, 5 minutes before the end of the interview, a sound guy put a microphone in the aisle one row behind me! I was excited to know I might have a chance at being first in line to ask a question. As soon as he stopped talking, I jumped from my chair and into the aisle…but much to my dismay, there were already lots of others coming down the aisle to the microphone. I managed to get third in line and thought, surely, he'll take at least 3 questions?!?

But something seemed off. The people in the line were pointing at me and whispering about me. Then a young man finally came up to me and said, ma'am, what are you doing? I very confidently said “I am asking George a question.” I kind of implied…end of discussion, if you get my drift. But it wasn't. Another man asked the 17 year old boy in front of me, “is that your mother?” He said no he didn't know me. The entire time, a Sudanese refugee was asking George a question right in front of us. It was rather surreal. Finally, The Blonde Woman came up to me and told me I could not ask a question and I needed to take my seat. I told her my seat was in front of the microphone and I did not want to go in front of the Sudanese woman while she was speaking so I stood my ground. She was flustered. The other young man came back and explained that they were only allowing the three pre-selected, pre-screened people to ask questions and I HAD TO SIT DOWN. I was devastated. I explained that I had flown from Atlanta to have the chance to speak to George and I wanted to ask him about his brain and spine injury. He didn't budge so I gave him the envelope I had brought with all of my George literature and BEGGED him to PROMISE me he would PERSONALLY hand it to George. He did. So I handed it over and was forced to take a seat. I did not go back to my seat but sat on the empty row where the Questioners had been seated. I had a direct line of vision to George. I also had on my bright red dress, which you could not miss. I stood out like a sore thumb.

george_clooney._tracy.jpg

I kid you not, the third person pre-selected to ask a question actually asked him if he could choose 3 words to describe himself, what would they be. REALLY???? I could have told her…SEXIEST MAN ALIVE…now move over and let me ask him a serious question!!! After she moved from the microphone, George looked toward me and said “come on up.” So I jumped up and was at the microphone in 2 seconds. The next thing I know, my face was splattered across the JUMBOTRON and I looked up and saw myself and sort of had a freak out moment.

Unbeknownst to me, there was another lady right behind me who had raised her hand to ask him a question. I still don't know if he was talking to me or her but I do know, I saw my chance and I took it. They did not allow anyone else to ask a question and made that poor lady sit down. As we were leaving the theatre, I walked past her and heard her telling her friends “I was robbed! George told me to come on up but then that lady in the red dress jumped in front of me!” It's true, I did. I was on a mission.

So what did I ask him? I don't really remember word for word, but it went sort of like this…

Hi, I am Tracy from Atlanta. As I have been sitting here listening to you talk, I have discovered that you and I have a lot in common. First, you're about to celebrate your 51st birthday and I just turned 51. Second, I also had Bell's Palsy. And third, I, like you, am a CSF Leaker. I represent a group of Leakers on Facebook (at this point he laughed out loud as did the crowd…and I said, not THAT kind of leaker…we don't need Depends!) Once the laughter died down, I continued. We call ourselves leakers because we all suffer from the same condition you have. My question to you is, what have you had done, how are you now, and how can you go about your business so cheerfully if you are still in great pain? Leakers know how debilitating this condition is and we are all very impressed with your fortitude, knowing you are also a leaker.

His first response was to tell me how sorry he is that I suffer from leaking. He then proceeded to give the audience a lesson in leaking. He talked about the dura, the spine, how you can tear it, how you can leak, how horrible the pain is, etc. He said he has gone through a 13 hour surgery (I was not able to ask him exactly what kind of surgery) and has had multiple blood patches and glue patches. He says he is much better but sometimes still has headaches. He said he has had to adjust to this new reality of life with chronic pain. He said it is not as severe as it was but occasionally he has to go in for more patches. He expressed sympathy for anyone suffering with it. He ended as he started, telling me he was sorry for my pain and suffering. I was able to tell him that I am healed…and the audience clapped.

Then, The Blonde Woman told me to “shut up and sit down now.” I am not kidding, those were her exact words and I was happy to oblige. George was off the stage in about a minute and that was it. I could not believe that, out of 2500 people in attendance, I was the only one who was able to actually ask him a real, unrehearsed question. He listened intently and answered thoughtfully.

I chased down the young man who I gave my envelope to after the program and asked him again to PROMISE me he would give it directly to George and he said he would. I told him I was sorry to cause a scene, that it was not my intention, but I hoped I had brought some awareness to an important issue. He said George definitely invited you up. (I don't think this guy saw the woman raise her hand behind me either!) I felt empathy from this young man so I can only hope my literature made it into George's hands.


George Clooney interview in the Huffington Post:

2014/08/03 22:11 · bpaddock

~~DISCUSSION~~

2014/08/03 22:17 · bpaddock

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