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FunGuy
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Would love to put together and send over some UK relevant information for you - would it be welcome, or is this site primarily for US / Canadians audiences?

The NHS has finally added cluster headache to the at home oxygen list so all UK GP's should be able to prescribe easily, some are just completely unaware however.

https://www.networks.nhs.uk/nhs-networks/london-lungs/documents/oxygen-treatment-for-cluster-headache-adults-for-patients

https://www.uhb.nhs.uk/Downloads/pdf/PiOxygenTherapyClusterHeadaches.pdf

Above documents may be helpful if you have been turned away or denied at a UK GP Surgery.

The Oxygen company AirLiquide - which handles the South East of the UK (London) have been very helpful, and the delivery guys are well versed in cluster-headache, providing what seems to be the mask and regulator that OUCH (cluster headache charity UK) say is the best option. BOC Gas (handles part of the north) were also very helpful and knowledgeable on the phone, even offering to just sell me a canister and rental options if the NHS took much longer to get things sorted!

There is hope out there, now :) 

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  • 1 year later...
  • 1 month later...
49 minutes ago, wing_nut said:

Does anyone have a good doctor in the Seattle area that doesn't take 6 months to get into?

...dunno about the lead time but Lilly Jung Henson at Swedish (usta be at Issaquah branch...not sure now)...MS specialist but she knows CH...delightful person too...

Edited by jon019
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HI, while I live in Colorado, I am 59 and have CH since around 19- uggg I have gone to SO many dr and tried everything- except micro dosing- ( will next time) but I have gone to Dr Robbins in Northfield ILL- and his office is great. Brooke, his PA has been very helpful. I didnt see them on your dr list-

Dr Robbins Headache Clinic I think is the full name.

hope this helps people

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Thank you for this, Merle.  Dr. Robbins has been a good friend to people with CH. He has spoken at annual ClusterBuster conferences and published some valuable papers.  Was there a particular way in which they were helpful to you (a new prescription; some good advice; etc.)?

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I am surprised that Dr. Carrie Oakley Dougherty, Medstar Georgetown Medical, Washington, D.C., is not all the rage on here. She is an associate professor of neurology, and might as well run an academic headache center. Furthermore, Dr. Dougherty trained under Dr. William Young, the Chief of one of the few academic headache centers in the country, Jefferson Hospital, Philadelphia.

I worked with her until my insurance changed. She advocates on Headache on The Hill has immense compassion, and is compassionate. She is not on that list, and not a single person has mentioned her. She is beyond qualified. I believe that she is the chief of that headache center. 
 

She can handle the most difficult and extreme cases, like Dr. William Young, I was one of them. She is qualified, and again, how the hell she is not well-known surprises me. 

3800 Reservoir Road Northwest 
Pasquerilla Healthcare Center 7th Fl Dept Neurology 
Washington, DC, 20007

202-444-8525
 

https://www.medstarhealth.org/doctors/carrie-oakley-dougherty-md

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I would caution that Medstar is hit or miss in the DMV (DC, MD, VA) and Bodymore, Murderland, Bulletmore, (Baltimore). The doctors are either world-class (literally) or you do not want to see them with your head falling off. I do not know of any surgeon that I could trust at any of their, what 13 hospitals. If you need to go under the knife, you may want to talk to me. There are many choices.  

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On 2/19/2022 at 2:23 AM, Juss said:

I am surprised that Dr. Carrie Oakley Dougherty, Medstar Georgetown Medical, Washington, D.C., is not all the rage on here. She is an associate professor of neurology, and might as well run an academic headache center. Furthermore, Dr. Dougherty trained under Dr. William Young, the Chief of one of the few academic headache centers in the country, Jefferson Hospital, Philadelphia.

I worked with her until my insurance changed. She advocates on Headache on The Hill has immense compassion, and is compassionate. She is not on that list, and not a single person has mentioned her. She is beyond qualified. I believe that she is the chief of that headache center. 
 

She can handle the most difficult and extreme cases, like Dr. William Young, I was one of them. She is qualified, and again, how the hell she is not well-known surprises me. 

3800 Reservoir Road Northwest 
Pasquerilla Healthcare Center 7th Fl Dept Neurology 
Washington, DC, 20007

202-444-8525
 

https://www.medstarhealth.org/doctors/carrie-oakley-dougherty-md

I second this. She is my doctor and I LOVE her. She

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After too many poor experiences with neuros, I have to 2nd Merle's post on the fact that I also have had great luck at Robbins Headache Clinic in Northfield, IL (north of Chicago). I've been dealing with Brooke, his PA, also, and she's been awesome to deal with.  Previous neuros didn't seem to comprehend the seriousness and time-critical aspect of needing to get clusters under control. 

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