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Jill
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Dr. Goadsby...
« on: Jul 13th, 2007, 9:22am » |
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Hi...
I know that most everyone on here has heard of Dr. Goadsby but I was wondering if anyone has seen him.
My neurologist told me that he has set up a clinic in Los Angeles and he wants me to go out there for a consult. I am willing to do that but I wanted to see what others thought.
Does he have any new treatment options? So far none of the medications have worked for me and we are running low on ideas. I know that he is one of the surgeons doing the Deep Brain Stimulator, the other one is at the Mayo clinic, but I am not sure if that is the right route to go.
Anyways, I am rambling here. Just wanted to see if anyone had any thoughts or ideas about seeing him and all.
Thanks
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Bob_Johnson
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Re: Dr. Goadsby...
« Reply #1 on: Jul 13th, 2007, 11:24am » |
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Jill, the Los Angeles clinic is new information for me. Trust you are aware his main operation is in London: why not go there?
http://www.ion.ucl.ac.uk
If you have been reading here for several months then you have heard about current therapies. Anything new tends to hit these pages quickly.
Have you explored Karolinska Institute for resources?
http://www.ki.se
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Bob Johnson
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zanychef
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Re: Dr. Goadsby...
« Reply #2 on: Jul 13th, 2007, 11:43am » |
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DR goadsby is leaving the uk for los angeles soon
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plenty of time to sleep now me headaches aint too bad
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Jill
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Re: Dr. Goadsby...
« Reply #3 on: Jul 13th, 2007, 12:48pm » |
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From what I understand, he is moving his practice to Los Angeles but will be going to the UK once a month for cluster patients. Atleast that is what I have been told.
I have been keeping up with new treatments and I guess that I should have said that - sorry. I have already tried the trials for the occipital nerve stimulator and the super-orbital nerve stimulator. Neither of which worked. And of course, I have been doing the medication route but they havent found anything that works.
I was wondering more about this Deep Brain Stimulator that I have heard about. I have read some things on the board about it but I am still not sure of the risk versus benefit and such. I am kind of on my own with this right now since my supporter is in Sweden (somewhere where I would like to be right now) and I am in Maryland.
Anyways, thanks for the help.
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Bob_Johnson
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Re: Dr. Goadsby...
« Reply #4 on: Jul 13th, 2007, 12:59pm » |
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Here I thought I was being smart! <bg> The flag threw me.
Suggest you post a new message asking for folks experience with East coast medical centers/headache docs. Hard to believe that you can't find some deep experience within easy travel distance from Maryland.
1. Search the OUCH site (button on left) for a list of recommended M.D.s.
2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
4. http://www.achenet.org/physicians/ On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder" which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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| « Last Edit: Jul 13th, 2007, 1:00pm by Bob_Johnson » |
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Bob Johnson
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Jill
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Re: Dr. Goadsby...
« Reply #5 on: Jul 13th, 2007, 3:01pm » |
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Sorry that I threw you with the flag - I forgot that I had changed that. I am kind of living in three different places right now - talk about confusing....
I have a good doctor at Jefferson but he is just running low on ideas and that is the problem. I have been seen everywhere else from Baltimore to California to Chicago and no one seems to know what to do. This doctor will keep working with me trying different medications but I am getting frusterated, worn out and I am not sure how many more I can try.
So.. the alternative was to see Dr. Goadsby or another doctor in Arizona.
Unless someone knows someone on the east coast that can perform miracles...
Thanks for the help though.
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Patrick_A
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Re: Dr. Goadsby...
« Reply #6 on: Jul 13th, 2007, 3:54pm » |
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Hi Jill,
I am sorry you are feeling the way you feel. There are a few people on this board who I am sure can commiserate with you. Un-Solved comes to mind.
Does oxygen not help you?
I assume you have tried all of the prescribed cocktales of medicines, yes?
Have you tried an Asian Doctor? Don't rule them out.
Patrick_A
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thebbz
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Re: Dr. Goadsby...
« Reply #7 on: Jul 13th, 2007, 6:00pm » |
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clusterbusters.com
I would at least do some reading here before DBS. You never know.
all the best
jb
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Jill
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Re: Dr. Goadsby...
« Reply #8 on: Jul 13th, 2007, 6:10pm » |
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Hi...
I have been around the block a few times with these headaches - I have tried all of the cocktails plus some new ones that the doctors are just trying. Still no luck.
My only abortive which doesnt work that great is benedryl injections. Oxygen doesnt work at all - I have tried more than once.
I am so fed up with all of this right now. I am having a hard time getting family to understand and with my main supporter so far away - it just gets very difficult. I am on the verge of tears so many times during the day now... I am just tired of the pain. Sorry.
I will do some research before I do the DBS surgery and I will think hard about it. I didnt think that it could hurt to have a consult though and see if they had any other ideas.
As to clusterbusters, I am not sure about that one either. I made a promise that I would not do that and I intend to keep that promise. It is hard to explain.
Thanks for the help...
Jill
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thebbz
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Re: Dr. Goadsby...
« Reply #9 on: Jul 13th, 2007, 6:18pm » |
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Take it easy on yourself. Lots of supporters here. That pain would get to anyone. Please reconsider the alternatives, seeds and shrooms could not hurt and have give relief to so many. What have you got to lose.
Then go get DBS that doesn't work. At least you have done what the doctors do. Go from the least harmful to the next invasive and so on. IMHO Try not to make people understand they have no idea and it will only piss you off.
jb
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JohnM
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Re: Dr. Goadsby...
« Reply #10 on: Jul 14th, 2007, 2:02pm » |
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Jill
Sorry, but I find it hard to believe that you are considering invasive and dangerous brain surgery rather than try the all the alternatives first.
I have never tried oxygen for CH myself, but have read of many here who had no success with it initially UNTIL they did it the RIGHT WAY, using the right mask, right flow rate etc. Have you done it this way?
I also have never tried shrooms or seeds as imigran injections always worked for me as an abortive. But... if all else was failing I would give it a go.
When I was first correctly diagnosed by a neuro back in the mid 90's after suffering with this since the 70's he said my options included various surgical procedures, but his advice was to never do it as the risk vs benefit was too high.
On a personal note I have been pretty much CH free for over 5 years now since I discovered that a very strict strict detox diet could break and prevent my cycles. I do this every 6 months or so or whenever I start to feel "headachy", which is always how my CH cycles start. Of course I am always concerned that they may return one day so I am still sticking around on this board to keep up to date, even though I feel I have found my own "cure".
John
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UN solved
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Dr. Goadsby is one of the top cluster headache doctors in the world. He's probably seen and treated more cluster patients than any other doctor. If you get a chance to see him ... Don't hesitiate --> DO IT !!
Dr. Black from the MAYO Clinic is a good person to ask about the status of DBS operations in the US.
Dr. Saper & Dr. Todd Rozen from MHNI are very good cluster HA docs that are not afraid to use brand new techniques, if the situation requires it. They are also friends with Dr. Black and others from the MAYO clinic and elsewhere.
You mentioned Chicago ... were you referring to the Diamond Headache Clinic ? Their specialty for the treatment of clusters is Histamine desensitization. Have you tried Histamine, and if so, did you try it more than once? Sometimes it will completely fail only to work great on the second try. It's non-invasive and may provide 'striking' results. It's worth a try for sure. (Read my tagline below my post)
Clusterbusters may also be worth a try, as it has been reported to be helping many sufferers end cycles and sometimes prevent them all together when dosing at the right times.
There's always something else to try. Keep looking and you'll find something that helps. Just don't give up !!
Goodluck
UNsolved
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| « Last Edit: Jul 14th, 2007, 4:06pm by unsolved1 » |
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Jill
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Re: Dr. Goadsby...
« Reply #12 on: Jul 14th, 2007, 6:25pm » |
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on Jul 14th, 2007, 2:02pm, JohnM wrote:| Sorry, but I find it hard to believe that you are considering invasive and dangerous brain surgery rather than try the all the alternatives first. |
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I am not entirely considering the surgery right now - I am just trying to plan a way to see Dr. Goadsby. The surgery is something that my neurologist wants me to think about and it is something that Dr. Goadsby might suggest. I havent made any final decisions about any of it yet.
But, I do want to go see him. I have heard that he is the best and I am hoping that he might have other ideas besides shrooms and surgery.
Shrooms is something that has been discussed with my doctor and if I want to maintain him as my doctor, I do have to be careful with what I do. He is the first neurologist to stick with me and the only one that has promised not to give up on me. I am not going to lose that, hense my hesitation.
I have tried the seeds though - no luck.
And there are other reasons too. Yes, I do want relief... I cant put into words how badly I want relief and how badly I dont want to hurt every single day. I am sorry if anyone doubts that.
As to Chicago and the histamine treatment - I was admitted there for two weeks for the histamine treatment and it didnt do anything for my headaches. I have yet to understand why nothing is working but it isnt.
And I have tried the oxygen many times. The air was too cold and it makes my head worse. Anything that actually is breathed it through the nose makes it worse - like the nasal sprays. Anyways, they tried it with something that made the air warmer but it still did nothing for my head. I am sorry, it just doesnt work.
I guess that I just have to keep plugging along no matter how much I want to throw in the towel.
Thanks
Jill
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| « Last Edit: Jul 14th, 2007, 6:27pm by Jill » |
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thebbz
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Re: Dr. Goadsby...
« Reply #13 on: Jul 14th, 2007, 10:04pm » |
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If your neuro is not going to see you because you try an alternative treatment after all you have been through......He is an idiot. He should be glad you have been honest with him and he is biased from the class 1 drug stigma...what a dick
I would fire him..sorry I just hate ignorance and arrogance
all the best Jill and keep up the good fight.
jb
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Xenoz
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Re: Dr. Goadsby...
« Reply #14 on: Jul 16th, 2007, 8:37am » |
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Hi Jill,
Good luck with your decisions. I would definitely see him if you have a chance - you never know. Remember that in any new type of treatment, you in essence would be trailblazing, and that they likely don't really have a clear picture of what a lot of their new treatments will actually do (particularly on a long-term basis).
I have been getting CH episodes once or twice per year since I was 15 (now 33), 1.5 - 3 months per episode. I tried psylocybin mushrooms two and a half years ago when *out of cycle*, took them once every 4 months, and remained CH free until three weeks ago (my last batch of shrooms that I took two months ago had been sitting in the freezer for a year so they were probably no longer potent enough).
So for over 2 years, I was CH-free (not even any shadows or hints of CHs) - and I solidly believe that this was solely due to my preventative maintenance doses of psylocybin. My only mistake - not having fresh enough meds.
I have ordered some RC seeds to see if I can break of of this cycle, which is literally destroying me. Never tried them before but I will - once I detox from the prednisone (which I will never ever use again).
Anybody would and should be hesitant to use so-called "alternative" medications - after all, most are illegal, hard to find, potency and purity is unknown, etc. Although psychedelic medications should always be taken with great care and concern, it bears noting that every CH is like a bad trip (in my eyes, worse) - and a little bit of planning and a small amount of psychedelic meds to test the waters will be unlikely to result in any harm.
I'm really hoping the RC seeds work for me.
I want to point out that just because certain governments decide that certain substances should be "illegal" and deemed "medically useless" does not mean that these substances should be ruled out from medical self-treatment - particularly when the alternatives are risky surgery or continually recurring, dehabilitating pain.
It's interesting to note that the US Government actually discovered, to a degree, that psychedelics can help treat migraines and CH's. They also discovered that if you give large quantities of psychedelics to people without telling them, those people go on pretty bad trips.
I don't look at psylocybin as being any different than aspirin, lithium, vitamin C, cannabinoids, garlic, Tums, or any other substance. Each substance has its uses.
Tums won't stop scurvy.
Psylocybin won't stop heartburn.
And Vitamin C won't stop CH's.
But these three substances (in proper order) can help stop and prevent these three conditions.
In any case, if no other treatments have worked for you, you may want to do more research on psylocybin (and also RC seeds, which can be bought legally). And also see Dr. Goadsby. Consider all options and choose as best as you can.
In my case, verapamil destroys me (I became nearly suicidal even when PF) and made my CH's worse. As a result, I am not willing to take any other types of long-term medications such as lithium, etc.
I now know that Prednisone destroys me (I feel like a beaten up 90 year old man with arthritis). Tapering off the stuff now, which is extremely difficult. I am so dehabilitated by the CH's and coming off the prednisone that I have been physically unable to drive (or do much at all) for the last two days.
Imitrex works for me - I use the nasal spray (20mg) if I can clear my nose out, the injection if not. It has not failed to get rid of a CH yet. However, it also makes me feel tight, achy, loopy, tired, irritable and soupy for hours and hours afterwards, so I use it as a last resort.
Oxygen and caffeine are my best friends right now... And they'll be all I have once I get off the prednisone and detox to try the RC seeds.
Good luck in your research, and may PF days be ahead!
-Xenoz
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I'm sure Dr. Goadsby wouldn't suggest surgery until you've done everything else first. The chances of you actually trying the DBS surgery is remote.
So, the histamine failed for you on the first try ? What about the 2nd or 3rd try ??
Shrooms ? Try them, it just may work !
Goodluck
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Peppermint
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Re: Dr. Goadsby...
« Reply #16 on: Jul 17th, 2007, 11:58am » |
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Jill...
Goadsby will be moving to the Wesst coast, one of the reasons he did not speak at our convention unfortunately.
But, since you're on the west coast, have you tried NECH, Dr. Sheftell? He was away but is possibly back by now. Also Dr. Tepper at NECH.
Recently Edub had success with getting a break at North Shore Memorial, in Long Island where Dr. Rosen treated him - and he got a long-needed break.
Pep
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Bob P
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Re: Dr. Goadsby...
« Reply #17 on: Jul 17th, 2007, 5:55pm » |
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Svenn posted a link to an article a while back which said that Prof. Goadsby was moving his operation to University of California San Francisco.
http://pub.ucsf.edu/today/cache/feature/200702273.html
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| « Last Edit: Jul 17th, 2007, 6:00pm by Bob P » |
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Jill
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Re: Dr. Goadsby...
« Reply #18 on: Jul 18th, 2007, 10:18am » |
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Thanks for the information you all - I appreciate it.
I am playing a waiting game right now with my doctor trying to work things out for me. The place with Dr. Goadsby is going (in San Fransisco - I had the wrong place) doesnt seem to know anything. And the other doctor in Arizona is really booked.
The neurologist that I have now evidently did or does alot of work with Dr. Goadsby and that is why he wants me to go there for a consult. He doesnt think that the DBS surgery is that remote of a possibility - there isnt any regular medication that I havent tried plus so many other things. We will see though - I am not even sure that I want to go that route.
I didnt think that I could try the histamine treatment again, figured if it didnt work the first time than it wasnt going to work the next time. I am just now paying off that bill but I will see about that too.
And I know the results with the shrooms but they still make me hesitant. I wouldnt be 'allowed' to bring any of that into my mothers house - she doesnt get the headaches not that it matters because it doesnt seem that she cares either. Sorry. I will discuss it again with my doctor and see what he says though.
I am not sure what to do right now. I dont have it in me to keep seeing different neurologists and having them not know what to do. It took me four years to find the one that I have now and the fact that he promises not to give up on me, well that says alot.
Again, thanks for the information. I will talk to my doctor about some of these options and see where that leads me.
Thank you
Jill
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bluebrain
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Re: Dr. Goadsby...
« Reply #19 on: Jul 30th, 2007, 8:52am » |
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Hi Jill. You can find shrooms all over Sweden, specially semilanceata also called liberty shrooms, I live in Copenhagen and got them from there. The reason why they work so well its quite simple.
best wishes
Bluebrain
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nani
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Re: Dr. Goadsby...
« Reply #20 on: Aug 2nd, 2007, 12:29am » |
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on Aug 2nd, 2007, 12:17am, dbsworks4me wrote:So there yougo too... Don't be a chicken, I will be there if need be and there are a plethora of others who have gone through the surgery...
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Don't be a chicken!?!?! A plethora of others?!?!?
You're starting to really piss me off, Kris, or sgarner...whoever the fuck you really are. 
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Pinkfloyd
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Re: Dr. Goadsby...
« Reply #21 on: Aug 2nd, 2007, 1:43am » |
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on Aug 2nd, 2007, 12:17am, dbsworks4me wrote:but I did have the DBS that sems to be so contiversial.
regarding the effedts of DBS on cluster headaches and chronic paroxysmal hemicrania;
, but it has worked for me with astonishig and complete relief, that is all that matters to me.
CPH are in the same family of diaorders called TAC and the mechanism regarding the pain receptors and actual biological respose
I don't undererstimate his expertise in this area
Yes, I am walking aroungd with a computer in my head,
I would do it agin in a heartbeat because
I can actually feel the pain from the nerves rceeding
Also, DBS NOT as invasive or monstoous
the pain relief is immeidate and I am able to function just as well as I did before the headaches.
How was your spelling before the surgery?
Suffice to say, I underwnt what calla barbaric proedure,
not traumatic and t works. So ther you go!
the meds I wa on and I am not on anyhting...
So there yougo too...
Kris |
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So there you go.
I would have no problem with your spelling....who cares actually...
The problem I see is that you have more trouble with short words than the long medical terms.
It seems your stimulator has been adjusted to "college level" but there is a short in your primary school computer module.
Plethora ....hehehehe
Bobw
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Brew
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Re: Dr. Goadsby...
« Reply #22 on: Aug 2nd, 2007, 7:48am » |
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on Aug 2nd, 2007, 12:29am, nani wrote:| You're starting to really piss me off, Kris, or sgarner...whoever the fuck you really are. |
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Kris = Klusterkopf?
You never see them post at exactly the same time.
Hmmmmm.....
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Jill
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Re: Dr. Goadsby...
« Reply #23 on: Aug 2nd, 2007, 11:24am » |
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Kris...
If you did have the DBS surgery and it did work for you than I am happy to hear that. Where did you have the surgery done?
However, I do not consider myself or any others who are hesitant about this new surgery to be a chicken. See below quote.
Quote:Don't be a chicken, I will be there if need be and there are a plethora of others who have gone through the surgery...
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I am hesitant because it involves going into the brain, placing a stimulator and with that comes alot of risks. And what if I do all of that and it doesnt work?
Also, I am surprised that you would know of alot of people who have had this surgery for clusters because as far as I know, it is new. My neuro told me that his research led him to twenty patients who had it done for CH... another reason to be cautious.
Anyways, I am not a chicken and no one else is either.
Again, if you did have it done and you had good results than good for you.
Jill
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Bob_Johnson
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Re: Dr. Goadsby...
« Reply #24 on: Aug 2nd, 2007, 11:29am » |
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I'm glad that I don't have to struggle with sucha complex issue!
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Acute Hypothalamic Stimulation Not Effective for Ongoing Cluster Headache
Susan Jeffrey
Medscape Medical News 2006. © 2006 Medscape
December 4, 2006 — Although long-term hypothalamic stimulation is effective in improving drug-resistant cluster headache (CH), a new study suggests that acute stimulation does not effectively address ongoing attacks.
"The discrepancy between the findings of this study and the effectiveness of long-term hypothalamic stimulation in preventing drug-resistant chronic CH attacks suggests that long-term effectiveness is the result of complex mechanisms, probably involving the resetting of a complex circuit including brain structures additional to the trigeminal system, hypothalamus, and connections between them," the authors, led by Massimo Leone, MD, from the Istituto Nazionale Neurologico Carlo Besta, in Milan, Italy, conclude.
Their report is featured in the November 28 issue of Neurology.
Chronic Prophylaxis vs Acute Attacks
Functional imaging has shown that during cluster headaches — intense headaches that last from 15 to 180 minutes — patients show hypothalamic activation. Continuous hypothalamic stimulation has been shown to be effective in reducing cluster headache, with the inhibition of this activation thought to be the mechanism of efficacy, the authors note. In this study, the aim was to assess the effect of acute hypothalamic stimulation on CH attacks among 16 patients who had been implanted with a stimulator to address chronic drug-resistant cluster headaches.
All patients had had daily CH attacks for at least a year prior to implantation and had drug-resistant chronic CH according to International Headache Society criteria.
In each patient, at least 6 attacks were treated in this acute fashion. In the immediate postoperative period, the stimulator was turned on when an attack began and stimulation was continued either for 5 minutes after resolution of the pain or for not more than 20 minutes. After 7 to 14 days, continuous stimulation was begun at low amplitude and gradually increased to the final effective amplitude. During that time, attacks were treated acutely by increasing the monopolar amplitude when the attack began.
Of 108 evaluable attacks, a pain-intensity reduction of greater than 50% occurred in only 25 attacks, or 23.1%, and in 16% the pain resolved completely.
"In previous studies investigating the efficacy of drug treatments (triptans) in aborting CH attacks, up to 31% of attacks responded to placebo, indicating that hypothalamic stimulation under the conditions we investigated is probably not effective as an acute treatment for CH attacks," the authors conclude.
A Sensible Conclusion
In a commentary accompanying the paper, Peter J. Goadsby, MD, DSc, from the National Hospital for Neurology and Neurosurgery, in London, United Kingdom, writes that given their results, the authors "sensibly conclude that intermittent acute is less effective than continuous stimulation."
However, although only 5 years ago neurostimulation therapy seemed "futuristic," he notes, "there is a growing consensus that medically intractable chronic cluster headache now has an option to very simply transform the disorder."
Whether a less invasive approach of occipital nerve stimulation will have a similar benefit is now being studied. "What is clear is for a subset of patients with this important neurologic disorder, destructive invasive surgery with its associated morbidity and mortality may no longer be necessary. If this indeed proves to be the case, our patients will benefit."
Controlled trials of neurostimulation therapy "are the appropriate next step," Dr. Goadsby concludes.
Neurology 2006;67:1844-1845, 1735.
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