Health Fund for HR (Paul Hudson)

$19,935 of $15k goal

Raised by 554 people in 13 months
Lori Carns Hudson
HR, lead vocalist of Bad Brains and Human Rights, needs your help.

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."

9920279_1458006831.7707_funddescription.
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Update 21
Posted by Brian Marsh
2 months ago
   Share
1
1
HR had his surgery early yesterday morning. It went well and he has been resting in the ICU.

http://pitchfork.com/news/71772-bad-brains-hr-recovering-after-brain-surgery/

Your thoughts and prayers have helped more than you know. Many thanks.
-Lori
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Update 20
Posted by Brian Marsh
2 months ago
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Hello! First, I want to express our deepest gratitude for the attention HR has been getting in the media, and for the resulting positive thoughts and donations.

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.

-Lori
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Update 19
Posted by Brian Marsh
3 months ago
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1
1
Hi again! I was able to locate a compounding pharmacy and will be picking up the lidocaine nasal spray in the morning. I'm praying that it gives him some relief without the side effects of IV and oral lidocaine (mexiletine), which are dizziness, nausea, and loss of balance. It was the one drug that took away the headache pain, but he couldn't tolerate it at effective doses.

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.
-Lori
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Update 18
Posted by Brian Marsh
3 months ago
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Hi there. It's been a while since I've sent out an update, and it's time now.

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.
-Lori
+ Read More
Read a Previous Update
Jason Nardi
13 months ago

Simeon is right HR! I am an upper cervical doctor and life long fan - Get in touch with me - I am willing to help you get rid of that demon. No drugs. No surgery.

+ Read More
Simeon Sjöberg
13 months ago
8
8

If you have not already, please find an Upper Cervical Chiropractor, who is a specialist in the technique of removing pressure off of the brain stem.

+ Read More
Sharon Sherman
13 months ago
5
5

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,

+ Read More
Ryan Smink
13 months ago
3
3

I have heard the same as Aaron. I saw a tv show about the condition and one of the people found relief with Psilocybin mushrooms. http://reset.me/personal-story/psilocybin-mushrooms-stopped-cluster-headaches/

+ Read More
Dennis Guerrero
13 months ago
2
2

I hear psychedelic mushrooms may help.

+ Read More
Jeremy Peterson
13 months ago
2
2

Psilocybin... Not a joke... Proven to work countless times... I dont know the science behind it but you can look it up.

+ Read More
Dub Gabriel
13 months ago
2
2

I had a friend who who had the same problem and was able to relieve them using LSD. There is scientific background to this: http://www.sciencemag.org/news/2011/06/lsd-alleviates-suicide-headaches.

+ Read More
Kat Kannons
13 months ago
2
2

Sending HR lots of healing vibes and positive energy! I hope he feels better soon!

+ Read More
Michael Bielskis
2 months ago
1
1

Thinking of you both, Lori, as we all pray and anticipate a very successful surgery. Can't wait for the next update. Peace be with you both...need to see HR up on that stage again!

+ Read More
Mike Naylor
13 months ago
1
1

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!

+ Read More
Seamus Verde
2 months ago

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.

+ Read More
Karen LaPreziosa
2 months ago

Simeon & Jason are on the money. If you're open to natural medicine please look into chiropractic treatment.

+ Read More
Yasmeen Jacobs
3 months ago

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

+ Read More
Monika DeClay
5 months ago

I hope you both get the peace that you both deserve. xoxo

+ Read More
Beth Carey
5 months ago

just heard about this. please get better soon. love, a fan xxoo

+ Read More
Nicolas Aranda
7 months ago

https://www.youtube.com/watch?v=Krs-bD3073w

+ Read More
Liz Long
12 months ago

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

+ Read More
Cindy Reynolds
13 months ago

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

+ Read More
Sebastian Perez
13 months ago

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

+ Read More
Serolod van der Kolk
13 months ago

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.

+ Read More

$19,935 of $15k goal

Raised by 554 people in 13 months
Created March 14, 2016
Lori Carns Hudson  
PB
$30
Patricio Balladares
13 hours ago

I want to thank you for all you have given to mankind as a real and authentic artist. Get better.

HM
$5
Hank Manning
1 day ago

Five bucks is all I have. Hope it helps!

$26
sasha Than
9 days ago

get well

TG
$20
Tom Goldsworthy
15 days ago
KA
$20
Karim Atari
18 days ago

Stay strong HR. Always an inspiration

SH
$25
sam hurley
19 days ago

HR you are a living legend. Love and respect!

BC
$10
Ben Catt
1 month ago
$20
Anonymous
1 month ago
EC
$5
Erika Conrad
1 month ago

My name is Erika Conrad and I am the founder of the Facial Pain Advocacy Alliance. Please get in touch with me at info@face-facts.org! I have so much to share with you. Also, go check out our website, www.Face-Facts.org. There is a page about SUNCT and links to online support groups. The only way we will ever beat this beast is by advocating for awareness. Awareness brings money and money brings research. I myself have trigeminal neuralgia. Although it is unlike SUNCT in that there is not always an autonomic reaction (tearing, runny nose, etc) is it very similar in many ways. I can tell you my whole story when we connect. I am so sorry that you are suffering this hideous condition and I hope that many more people donate to offset your medical costs. People don't understand. This stuff can devastate you financially even as it devastates you physically. Peace, love, and light to your and your loved ones. Erika Conrad

JP
$10
Josh Pennington
1 month ago
Jason Nardi
13 months ago

Simeon is right HR! I am an upper cervical doctor and life long fan - Get in touch with me - I am willing to help you get rid of that demon. No drugs. No surgery.

+ Read More
Simeon Sjöberg
13 months ago
8
8

If you have not already, please find an Upper Cervical Chiropractor, who is a specialist in the technique of removing pressure off of the brain stem.

+ Read More
Sharon Sherman
13 months ago
5
5

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,

+ Read More
Ryan Smink
13 months ago
3
3

I have heard the same as Aaron. I saw a tv show about the condition and one of the people found relief with Psilocybin mushrooms. http://reset.me/personal-story/psilocybin-mushrooms-stopped-cluster-headaches/

+ Read More
Dennis Guerrero
13 months ago
2
2

I hear psychedelic mushrooms may help.

+ Read More
Jeremy Peterson
13 months ago
2
2

Psilocybin... Not a joke... Proven to work countless times... I dont know the science behind it but you can look it up.

+ Read More
Dub Gabriel
13 months ago
2
2

I had a friend who who had the same problem and was able to relieve them using LSD. There is scientific background to this: http://www.sciencemag.org/news/2011/06/lsd-alleviates-suicide-headaches.

+ Read More
Kat Kannons
13 months ago
2
2

Sending HR lots of healing vibes and positive energy! I hope he feels better soon!

+ Read More
Michael Bielskis
2 months ago
1
1

Thinking of you both, Lori, as we all pray and anticipate a very successful surgery. Can't wait for the next update. Peace be with you both...need to see HR up on that stage again!

+ Read More
Mike Naylor
13 months ago
1
1

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!

+ Read More
Seamus Verde
2 months ago

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.

+ Read More
Karen LaPreziosa
2 months ago

Simeon & Jason are on the money. If you're open to natural medicine please look into chiropractic treatment.

+ Read More
Yasmeen Jacobs
3 months ago

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

+ Read More
Monika DeClay
5 months ago

I hope you both get the peace that you both deserve. xoxo

+ Read More
Beth Carey
5 months ago

just heard about this. please get better soon. love, a fan xxoo

+ Read More
Nicolas Aranda
7 months ago

https://www.youtube.com/watch?v=Krs-bD3073w

+ Read More
Liz Long
12 months ago

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

+ Read More
Cindy Reynolds
13 months ago

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

+ Read More
Sebastian Perez
13 months ago

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

+ Read More
Serolod van der Kolk
13 months ago

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.

+ Read More
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