Health Fund for HR (Paul Hudson)
From his wife, Lori:
"I am HR's caregiver. He has a neurobiological disorder and has also had severe headaches for years. The headaches have gotten progressively worse; in November, he began living with almost constant pain. He has been diagnosed with a rare type of headache called SUNCT. There is no known cure and no reliable medical treatment. To give you an idea of what he's dealing with, the headaches are nicknamed “Suicide Syndrome.” The headaches come randomly, with no warning, at all hours of the day and night; but for him, they are much worse at night. The intensity of the nighttime headaches is so great that he yells, cries out, groans, and sobs—repeatedly, every few minutes, for most of the night. He can't work. He has no quality of life. If you call him and ask how he is, he will say, 'Everything's okay,' because that's just how he is. But everything is not okay.
"We've been consulting doctors for the past few years, and have uncovered several health issues that we were able to address and overcome. But these headaches... In the past six months, he's been to the emergency room twice, had an overnight in the hospital, has seen two neurologists, and so far he has a diagnosis and found a pain medication that worked well for a while but is not safe to take long-term—so it's two steps forward, three steps back. He has an appointment in early May at a Headache Center--not fully covered by health insurance--where we hope to find someone with experience with this type of headache. He's on a cocktail of pharmaceuticals that scares me. He has lost weight, with visible muscle wasting.
"As a clinical herbalist, you can be sure that I have also been tapping into my extensive knowledge of natural medicine. Nothing is working YET. I know what we need to try next, including acupuncture and some herbal preparations, however we can't manage the costs of these treatments.
"I am a full-time caregiver. I work a full-time retail management job with varying shifts. I manage HR's calendar and business as best as I can. I've been trying really hard to work on extra projects to bring in some extra money (very slow going). I take care of the apartment, the car, the bills, HR's doctor appointments, everything. I do all of the things. And now I can't sleep because my husband is crying out in pain all night. On top of the physical stress of shift work and not getting enough sleep, the emotional and psychological stress of watching him be in pain and not being able to do a damn thing about it is wearing me down. He needs me to be around more and he needs me to be at my best. I can't do this alone anymore. We need your help.
"Thank you for anything you can do to help HR regain his health--and his life."
Your thoughts and prayers have helped more than you know. Many thanks.
The lidocaine nasal spray did not work at all, so HR went back on the mexiletine. He is on a dose that is most effective with the fewest side effects, although he does still get quite a few break-through headaches. Anyone who has seen HR recently and noticed him being off-balance has seen the negative effect of this medication. Hopefully, he will be able to stop taking it within a couple of months.
His surgery is scheduled for February 21st. I created a Facebook event ( https://www.facebook.com/events/1251622778252833/) to encourage everyone to come together--wherever you are--and focus your positive intentions and prayers on HR before and during surgery. After surgery, I will be out of work for four to eight weeks to care for HR. He will be very limited in what he can--and is allowed to--do.
That's it for now. [Oh--in case it is confusing to see the name "Brian" with these updates--Brian is my friend (for 30 years) who created this GoFundMe then passed it on to me to manage.]
Many blessings to you all. May you all thrive, with love and peace in your hearts.
I was also able to schedule his surgery today. It will be in about five weeks. We won't find out the exact time until the night before, but in early February, I will put together a Facebook event to focus meditation on HR's healing before and after surgery.
Thank you for being there. Peace and Love.
We've tried almost all of the available medications and treatments for SUNCT, cluster headaches, and trigeminal neuralgia. We have tried a range of natural and traditional therapies, as well. Nothing has resolved his headaches and returned his quality of life. There are a few things that we will not be trying because they are not appropriate for HR for various reasons. We are still exploring a lidocaine nasal spray (looking for a local compounding pharmacy that will make it) and possibly Oxygen to get him through the next month or so; however, we've met with a neurosurgeon and HR has decided to try surgery. I will provide more details soon.
Once the surgery has been scheduled, I will write another update. I'd like to organize a healing meditation during his surgery.
Many thanks. Many blessings.
Hi I am a Philly based acupuncturist and herbalist. https://www.facebook.com/philadelphia.acupuncture/?fref=ts http://www.philadelphia-acupuncture.com/ I would be both happy and honored to help. Paying it forward, for all the fun, back in the day! Please feel free to reach out and either call or PM me,
Dear HR and family, I know I'm just one of a billion fans out there but HR and Bad Brains changed my life. The music and the message helped me grow and become better human being. I work hard at maintaining that PMA and big part of that is linked to what I learned and what I felt listening to Bad Brains. Thank you for your work and thank you for sharing your message. Aloha!
I'm the 4th person in the world to have the brain implant I have. I got it for Trigeminal Neuralgia but my symptoms are much closer to SUNCT (minus eye redness). It completely changed my pain levels. Also been getting ketamine infusions which have helped a lot with residual pain. I'd recommend my team to anyone and honestly feel they saved my life (and probably the lives of others on my bad days). PM me for more info.
Simeon & Jason are on the money. If you're open to natural medicine please look into chiropractic treatment.
Hi HR, I am really sorry to hear about what you're going through and it must be so hard to endure :( I have a relative who is a neurologist and I told him about your condition and he recommended the procedure Microvasilar Decompression. Ever heard of it? I'm not sure if this has already been suggested by the neurologists that you have been to already? In the meantime, please continue to stay strong, as I know you to be...I will also continue to pray for you to feel better and get the right treatment that will work best for you...God willing and God Bless you! xoxo
I hope you both get the peace that you both deserve. xoxo
just heard about this. please get better soon. love, a fan xxoo
http://www.vice.com/read/the-worst-hedache-in-the-world-876?utm_source=vicefbus I found this article that might help. I hope you get better soon, H.R. Stay strong. Keep the PMA
SUNCT and cluster headache are different animals. Both are Trigeminal Autonomic Cephalalgia's and both are painful, but they present differently. There's overwhelming evidence supporting the use of psilocybin for cluster headache (one-sided, excruciating event lasting from 30-180 minutes) however I'm not sure about it's use for SUNCT (100-500 stabbing pains over the brow within 1 minute). I'm an advocate going to Washington DC annually with "The Alliance for Headaches Disorders Advocacy". SUNCT seems to respond to specific "nerve stimulation surgeries". http://www.cracked.com/personal-experiences-2122-suicide-headaches-5-realities-worst-thing-ever.html
Dear Lori, I know this is likely a long shot and that you and HR have probably heard of and perhaps tried every cure for the cluster headaches but I thought should tell you that I saw a documentary not too long on how one man was using mushrooms (psilocybin) to deal with his horrible cluster headaches. Anyway, as I said I know its a long shot but thought I'd mention it. Best to you and all the BB crew. Their contribution has been immense. Tito
My family and I know how painful this is. My grandfather had Tic Douloureux and was cured at the UCLA medical center about 20 years ago. That may have been an exploratory surgery, but he has been living pain free without the tic and is still alive. We believe it saved his life. Hope this information helps.