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Topic: Suboccipital injection - W/UPDATE No. 1_11 (Read 36621 times) |
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wildhaus
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Suboccipital injection - W/UPDATE No. 1_11
« on: Jan 27th, 2008, 5:25am » |
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Hi
I have, after the start of a period of very unorganized attacks, sometimes
back to back, with an average of 7kip, and consultations with the Neurologist
as well as the pain clinic (anaesthesiologist) tried the Suboccipital injection
or better known as N.occipitalis Blockade (in the German oriented countries)
The test injection, injecting only Lidocaine (painkiller), was made on Wednesday Jan. 23. 2008 , (at the Pain clinic at the St.-Gallen, Kantons Hospital) to see if there are any negative reactions to the “injection” and the short term effects that could occur.
As it seemed I skipped an attack that used to “visit” me between 3PM and 6 PM.
The decision was very simple therefore, no notable side effects and an apparent
possible relief – we will try and pursue the treatment.
The first treatment injecting this time 2.5 ml mixture containing a long acting salt of betamethasone (dipropionate) a rapid acting salt of betamethasone mixed with xylocaine (Verumgroup) was done on Friday Jan. 25.2008, using only ½ the dose, in order to
see if and what side effects can or occur as well as controlled observation on the positive
or negative effects on the CCH (chronic clusterheadache).
Today Sunday 27 and (with great caution or over reaction) I’ve had since the first
1 and ½ PAIN FREE DAY’S In a very long time!
Did it work – it’s way too early to say – I will have to give it a few more days to be
able to answer this.
But if it will give me just 3-4 days of PAIN FREE it was or is a blessing for me!
Depending on the PF time we will continue the treatment, ( scheduled for Fr. Feb. 1 2008 ) but if it gives me a longer brake we will delay the treatment until it seems to be necessary to have the injection repeated and this time we will inject the full dosage.
In contrary to the treatment I have used before (GLOA / stelatum blockade –
Ganglion stelatum) which is very “violent” and not always effective, but it did give
me descent periods of pain free (one of 2 weeks and one of 8 weeks) which were
more than a welcome blessing, the N.occipitalis Blockade is a very simple one, one could
say “a walk in the park” and almost pain less in comparison to the GLOA and with lower degree of risks……
I will add the Abstract of the study that was published in “PAIN”
http://cat.inist.fr/?aModele=afficheN&cpsidt=17226635
This is the Link to the abstract, due to copy rights I can not post the study as a whole
I do hope I have added to the vast knowledge base we have on these boards, and will try
to keep posting, how (if at all) the treatment has worked with me…….
Michael
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| « Last Edit: May 17th, 2008, 12:35pm by wildhaus » |
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DennisM1045
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Re: Suboccipital injection
« Reply #1 on: Jan 27th, 2008, 8:42am » |
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Thanks for sharing this Michael. I hope it buys you a good long break.
-Dennis-
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sandie99
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Re: Suboccipital injection
« Reply #2 on: Jan 27th, 2008, 9:42am » |
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I wish you lots of PF time, Michael! 
Sanna
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MJ
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Re: Suboccipital injection
« Reply #3 on: Jan 27th, 2008, 10:20am » |
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Good on you Wildhaus. Long may it last.
Even a days relief can be a great victory. Yet it seems this may have a higher potential than many other CH treatments used.
At 70-80% of Cluster heads geting relief for 4 weeks with a single full shot injection thats pretty good and it "seems" higher values for chronics. More positives like yours are needed.
As good as some get with CB methods.
Best of luck
http://www.docguide.com/news/content.nsf/news/8525697700573E1885256DB100 4CA8E9
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| « Last Edit: Jan 27th, 2008, 10:22am by MJ » |
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MJ
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wildhaus
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Re: Suboccipital injection
« Reply #4 on: Jan 28th, 2008, 1:51pm » |
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I am adding the "Pic." of where you find the
N.occipitalis major (in red) and to where the block
was made
Michael
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George_J
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Re: Suboccipital injection
« Reply #5 on: Jan 28th, 2008, 1:57pm » |
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Thanks for the report, Michael. Sounds as if the initial results have been hopeful.
Here's hoping this simpler and less painful procedure will buy you some significant pain free time.
Best wishes,
George
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Gator
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Re: Suboccipital injection
« Reply #6 on: Jan 28th, 2008, 2:23pm » |
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I hope this works to give you some major pf time, Michael.
Thanks for sharing with the rest of us, too.
Mike
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cluster
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Re: Suboccipital injection
« Reply #7 on: Jan 29th, 2008, 7:25am » |
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Hello Michael,
my best wishes, that this treatment will give you a very loooooooooong painfree time!
Regarding the article in The Journal PAIN: For a limited time, this title is open to the public in a free trial period.
*** The free trial period has ended. ***
See http://www.painjournalonline.com/issues
Here is the link to the full text article about "Suboccipital injection with a mixture of rapid- and long-acting steroids in cluster headache : A double-blind placebo-controlled study (PDF):
http://download.journals.elsevierhealth.com/pdfs/journals/0304-3959/PIIS 030439590500374X.pdf
pf wishes!
Friedrich
Edit: *** The free trial period has ended. ***
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| « Last Edit: May 3rd, 2008, 12:51pm by cluster » |
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Batch
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Re: Suboccipital injection
« Reply #8 on: Jan 29th, 2008, 8:30pm » |
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Michael,
Great news... We all hope the PF time will continue. Good on you for sharing this exciting information. Joyce and I send our best to you, Marta, JJ, and Ben.
V/R, Batch
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wildhaus
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Re: Suboccipital injection
« Reply #9 on: Jan 30th, 2008, 1:48pm » |
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It is Wednesday Feb.30 and its 7:30PM
on my end of the Globe,
It is the 5th day past the “Injection”
(Friday Feb. 25 1pm)
and only 1 CH attack since.
If I have it right it was
past the short term active substances effect
and prior to the long term active substances effect
Have a date at the Pain clinik on Friday, I dont
know if Ill need it.....
if it holds.....
then I can drop the "date" and move it to next
Friday......
Michael
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artonio7
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Re: Suboccipital injection
« Reply #10 on: Jan 30th, 2008, 2:05pm » |
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on Jan 30th, 2008, 1:48pm, wildhaus wrote:It is Wednesday Feb.30 and its 7:30PM
on my end of the Globe,
It is the 5th day past the “Injection”
(Friday Feb. 25 1pm)
and only 1 CH attack since.
If I have it right it was
past the short term active substances effect
and prior to the long term active substances effect
Have a date at the Pain clinik on Friday, I dont
know if Ill need it.....
if it holds.....
then I can drop the "date" and move it to next
Friday......
Michael
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Michael!!! Sounds like exciting news! I'm glad this is giving you relief from pain.
Keep us posted on the progress and any changes.
with warm regards,
Tony
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Garys_Girl
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Re: Suboccipital injection
« Reply #11 on: Feb 2nd, 2008, 4:27pm » |
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This sounds so promising! Sending you huge wishes for MUCH pain free time!
I find it so strange that the news article link is from 2003 and the research published in 2005. Was your doctor searching for relief for you - or - how did the information surface to give it a go?
I realize it's a very small study - but it really sounds so promising. Is the problem the issue of steroid use?
Any idea how often you'll go for injections?
I really hope this brings you relief!
Laurie
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wildhaus
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Re: Suboccipital injection
« Reply #12 on: Feb 3rd, 2008, 6:58am » |
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I is now just over a week since the Injection (done on Jan.25.2008 ) and the attacks
are back ; the first was on Friday (Feb.01.2008 ) so I can say I had a week with only 2 attacks so for me almost a PF week.
I will try and get another “Injection” on Tuesday Feb.05.2008, and this time a higher dose
to see what will happen. I wonder how effective it will be…. and what will it do for me.
To:Laurie (Garys_Girl)
Quote:I find it so strange that the news article link is from 2003 and the research published in 2005. Was your doctor searching for relief for you - or - how did the information surface to give it a go?
I realize it's a very small study - but it really sounds so promising. Is the problem the issue of steroid use?
Any idea how often you'll go for injections? |
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The idea to use Suboccipital injection or better known as N.occipitalis Blockade, was
discussed between me, my Neuro and the Pain clinique about 1 week prior to the
initial treatment. It is not an approved treatment, and is being tested currently
in another pain clinique in Switzerland with some good results, and that is how “we” came
to the idea to use this venue and to go ahead and give it a try.
As it seems I will be one of the first ones to go ahead and try a long period treatment
using this method…… and I wonder my self how often I will have to have it “injected”
as well as all other open questions, effectiveness, related risks, and long term effects.
The only thing I can say that I am hopeful on one hand, and very greatfull on the other
for every period of pain free time I get……. it’s a blessing!
I used to go every week or so to have the “GLOA” done with some (marginal) results.
I had good results twice (2 weeks and 8 weeks pain free) but a total of about 30
“violent” treatments with such “little” rate of success I have abandoned the GLOA treatment…..
So if I have to go once a week (if that is doable at all because of the amount of steroids) to do
the Suboccipital injection and it will do its “JOB” and give me PF time I will do it once a week!
and its not as violent as the GLOA is.
It really sounds so promising, but honestly its way to short of an experience on my end
to be able to say or even hope….. in order to be able to say it is promising, I will need
some more time end collect some more data to be able (my self, the Neuro and the pain
clinique) and evaluate this “venture”.
See what are the attached risks and long term results.compared to effectiveness.
To MJ:
Quote:At 70-80% of Cluster heads getting relief for 4 weeks with a single full shot injection thats pretty good and it "seems" higher values for chronics. More positives like yours are needed.
As good as some get with CB methods. |
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CB methods, I can NOT use any of this methods, If there be any trace of the “substances”
faund in my blood, in case of an accident, and I do work with things that do “Boom”, and
accidents happened, I will most likely loose my job….. and I need to work, as well as all
rights for Insurance coverage, as well as if there’s a permanent damage any right for
disability Insurance.
The CB methods, as good as they might be, are Illegal, and there fore a taboo for me for
for obvious reasons. (This stament is in no way diminishing the effectiveness and results
of the CB methods, it is just out of the question for me)
In any case I will try and update this as I go along….
Michael
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E-Double
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Re: Suboccipital injection
« Reply #13 on: Feb 3rd, 2008, 7:59am » |
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hang in brother
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hotprestwich
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Re: Suboccipital injection
« Reply #14 on: Feb 3rd, 2008, 11:06am » |
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its such a shame that natural methods are illegal,
they should class them medically like morphine,
i find it crazy that a lot of chems are alowed but not things that grow on trees or in the ground,
what a weird world we live in
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Garys_Girl
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Re: Suboccipital injection
« Reply #15 on: Feb 3rd, 2008, 7:38pm » |
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Michael,
Thank you so much for the update and answering my questions (as best you could).
Thank you for posting this here. I've forwarded the info to Gary's Doc, and we'll be discussing this Thursday.
Gary did try the occipital nerve block with lidocaine or whatever it was. It did nothing but make the side of his face frozen for a day or so and give him a big, fat, painful lump on the back of his head that hurt for two weeks. He tried it again with the same results.
It's hard not to get my hopes up.....
I'm so sorry the beast is back - but I'm holding out hope that the higher dose will give you a longer pain free time. !!!!!!!!!!!!!!!
Laurie
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lennycohen
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Re: Suboccipital injection
« Reply #16 on: Feb 4th, 2008, 5:29pm » |
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While I'm not sure if my injection was just lidocaine or a lido/cortisone combo, I got a suboccipital nerveblock last Wednesday afternoon and have not been hit since. I've been a little sore, but I haven't used O2 or Imitrex. I have, however, been a poster child for polypharmacy - been on topamax for almost 2 years, norvasc for about a month, depakote for a week and a half, and lithium since last Wednesday. I'm surprised I can walk upright. But no headaches to speak of - well a little shadowing here and there. To the poster with a lump on the back of the head and a numb half face - I'm thinking new doctor, that just doesn't sound right for a sub-occ block ---- good luck -- I would do this again in a heartbeat.
Lenny
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wildhaus
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Re: Suboccipital injection
« Reply #17 on: Feb 7th, 2008, 12:27pm » |
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Had my “second” half of the Shot on Tuesday Feb. 05.08 and so far so good!
Lowered the verapamill intake down to 160 mg a day that is 40mg. morning
40mg. lunch and 80mg. evening……
Wonder how long it will hold……
Michael
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| « Last Edit: Feb 7th, 2008, 12:28pm by wildhaus » |
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DennisM1045
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Re: Suboccipital injection
« Reply #18 on: Feb 7th, 2008, 12:30pm » |
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I hope it holds forever  Thanks for the update.
-Dennis-
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Annette
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Re: Suboccipital injection
« Reply #20 on: Feb 8th, 2008, 4:57pm » |
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Thanks Michael for sharing, its very interesting
Hope the second shot works for a very very very long time 
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sandie99
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Re: Suboccipital injection - WITH UPDATE No. 3
« Reply #21 on: Feb 9th, 2008, 6:51am » |
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Michael,
thank you so much for the updates! I hope that the second one brings you a long, long PF period with it.
PF days,
Sanna
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Batch
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Re: Suboccipital injection - WITH UPDATE No. 3
« Reply #22 on: Feb 9th, 2008, 7:58pm » |
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Michael,
They may not know it at this point, but cluster headache sufferers all over the world are going to benefit significantly from your volunteering for the phase I Suboccipital Injection Therapy study.
All any of us can really do at this point is hope and pray the effectiveness of this therapy brings you a very real and lasting break from the pain we all know.
Kudos my friend.
V/R, Batch
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| « Last Edit: Feb 9th, 2008, 7:59pm by Batch » |
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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Re: Suboccipital injection - WITH UPDATE No. 3
« Reply #23 on: Feb 9th, 2008, 8:15pm » |
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Much thanks man, we're rooting for pain free days for you.
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wildhaus
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Re: Suboccipital injection - WITH UPDATE No. 3
« Reply #24 on: Feb 10th, 2008, 9:45am » |
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one more (little) bit of info.
and next time I go Marta will try and do some Pic.
Micahel
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