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Re: Suboccipital injection - W/UPDATE No. 1_6
« Reply #50 on: Mar 13th, 2008, 5:28pm »
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Michael, hang on.  You know we are all with you on this and praying it works.
 
Luv
 
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Re: Suboccipital injection - W/UPDATE No. 1_6
« Reply #51 on: Mar 15th, 2008, 3:20am »
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I have got this from a fellow CH, and a fellow member of our (virtual) family.
Could be that my last Injection was partly (if at all) successful due to the inaccurate
positioning of the “Injection”……
 
I have passed this info. to the pain / neurological clinic (and post it for your information),  
Will know Monday or Tuesday If I can try (on Thursday March 20th 200Cool to get another Injection,
and hopefully using ultrasound to increase accuracy, and achieve grater results..
 
Quote:
Ultrasound-Guided Block of the Greater
Occipital Nerve (GON): Accuracy of a Selective New
Technique Confirmed by Anatomical Dissection
 
1 Bernhard Moriggl, 2 Manfred Greher, 3 Michele
Curatolo, 4 Lukas Kirchmair, 3 Urs Eichenberger
1Anatomy, Histology and Embryology, MUI Innsbruck,
Austria; 2Anaesthesia, Herz-Jesu Hospital, Vienna,
Austria; 3Anaesthesiology, Inselspital, Bern, Switzerland;
4Anaesthesia and Intesive Care, MUI Innsbruck, Austria
bernhard.moriggl@uibk.ac.at
 
Background and aims: Greater occipital nerve (GON) block
is used to diagnose occipital neuralgia or pain arising from
the innervated area of the GON. The present study describes
a new ultrasound-guided approach to this nerve and
determines its accuracy using anatomical dissection control.
Materials: Twenty ultrasound-guided approaches to the
GON were performed in 10 embalmed cadavers. After injection
of 0.1 ml of dye the cadavers were dissected to evaluate
needle position and colouring of the nerve.
 
Results: All twenty needle tips were located at the exact
target point directly at the GON. In nineteen of these cases
the entire nerve was coloured and in one case the nerve was
partly coloured. In contrast to the standard “blind” approach
of GON block we targeted the nerve more central where it is
usually not divided. Just after it runs around the caudal edge
of the obliquus capitis inferior muscle, it can easily be found
and visualized by ultrasound. The median (range) diameters
of the nerve measured by ultrasound were: 4.0 (3.2 – 5.6) x
1.8 (1.2 – 2.6) mm. It was found 27.6 (18.9 – 32.6) mm lateral
to the spinous process of the C2 vertebrae.
 
Conclusions: The anatomical dissections confirmed that
our new ultrasound-guided selective approach to the GON
near its origin out of the C2 root is accurate. Thus, ultrasound
could become an attractive alternative to the “blind”
standard techniques of GON block in pain medicine and
may lead to more accurate block of the nerve.
 
Quelle:
Moriggl B, Greher M, Curatolo M, Kirchmair L, Eichenberger U.: Ultrasound-Guided Block of the Greater Occipital Nerve (GON): Accuracy of a Selective New Technique Confirmed by Anatomical Dissection. Poster. Surg Radiol Anat. 2007; 29: 437. DOI
 
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Re: Suboccipital injection - W/UPDATE No. 1_6
« Reply #52 on: Mar 15th, 2008, 3:38am »
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on Mar 12th, 2008, 10:36pm, Garys_Girl wrote:

We got much of this info to Gary's pain management Doc, and he ordered the betamethasone.  He went by himself last time and chickened out (the last time he tried an occipital block he was in a lot of pain from the injection and it didn't help at all.  Doesn't help that he no longer keeps a headache diary, because he remembers an increased level of activity after the shot, but I don't think that's the case).
 
Anyway, hopefully in two weeks at his next appointment he'll be able to go through with it.
 
 
Laurie

 
 
I can not blame Gary that he chickened out……  I don’t think it looks nice or in
Any way appealing to do this blocks…..
 
I am not a brave person……  Marta (my wife) has to go with me, for 2 reasons
the first and for most….. I need her support….. She holds my head during the
“Injection” and it dose give me the extra strangest to go through it….
The other reason is that I should not drive after the “injection” – the pain clinic
will not do it unless Marta is with me!
 
But as “violent” as it looks not only it dose not hurt (relatively) if it is done
correctly and positioned right it (in most cases with me) worked good, that is
it gave me about 2.5 weeks of PF time….. and that is just simply a blessing!
 
 
Michael
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Re: Suboccipital injection - W/UPDATE No. 1_6
« Reply #53 on: Mar 21st, 2008, 12:02pm »
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I am adding this link to my thread….
 
http://www.ck-wissen.de/ckwiki/index.php?title=Infiltrationstherapie_bei _Cluster-Kopfschmerz
 
This page is dedicated to “Infiltrationstherapie bei Cluster-Kopfschmerz“ or what I call through out my thread the “Injection”.
 
The home page offers much more knowledge,
 
http://www.ck-wissen.de/ckwiki/index.php?title=Hauptseite
 
It is a first class “knowledge” source about CH!
It is in German, I did Google it, and it did very good!
This CK Wissen is one of our own family members Website
Friedrich, better known as cluster to all of us.
 
Do take the time and look at it, please
 
Michael
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Re: Suboccipital injection - W/UPDATE No. 1_6
« Reply #54 on: Mar 24th, 2008, 12:57pm »
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Michael, were you able to make the appointment and did they use ultrasound to more accurately locate the appropriate injection site?
 
Obviously I am hoping so - and that you are PF right now!
 
Gary has Doc appointment this afternoon.  This time I'm heading out there with him.  We'll see what happens.....
 
My best,
 
Laurie
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Re: Suboccipital injection - W/UPDATE No. 1_9
« Reply #55 on: Mar 28th, 2008, 3:43pm »
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Hi
 
I just came home from a „date“ with my Neuro….
and another round of the “Injection”,
 
Neuro…
will start to use Lithium as a second preventive
in 2 weeks…. will still use the Verapamill (120mg / day)
This is an exploratory try…..  
but first have to do some test like blood and an EKG etc. to determine
if the Lithium has any negative effects which would be miserable,
 
The “Injection”….
this time around we used the “full dosage”
and hope it will hold more than just a week….
will have to see… I will up date this thread ….
 
what I personally hope is that I will have a break
even a short one of this round of violent attacks,
and so many a day……
 
I am positive it will……has so far for the last 5 hrs…..
 
Michael
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Re: Suboccipital injection - W/UPDATE No. 1_9
« Reply #56 on: Mar 28th, 2008, 3:49pm »
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Michael, please correct me if I am wrong.
 
The injections had been working well until the time you went to Paris right ? It had been giving you at least 2 weeks painfree except for when you went to Paris. You had an injection just before you left and you got hit within 48 hrs after driving for 800 kms in Paris?
 
I was wondering if its the stress of traveling and working in Paris that caused the break through hits and prevented the injections from working.
 
Would like to hear your thoughts on it thanks Michael.
 
Hope the injection works much better this time.
 
HUGS
 
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Re: Suboccipital injection - W/UPDATE No. 1_9
« Reply #57 on: Mar 28th, 2008, 4:30pm »
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Annette,
 
to be honest I don’t know,
bout it plausible that the
long drive and the stress
that came with it, (I do not
like to drive at all!) have triggered
the attacks,
We have talked about it today at  
the clinic, but we all do not understand totally
why the injection last time failed…..
We can only speculate…..
and to put it to test….. I will pass on
this one…..
 
As to duration, on every “Injection” a week
(7 Days) pain free….  
in total 2 weeks as I had 3 Injections and one
failed to bring the expected results….
The very first Injection was a test using Lidocain
to see if the nerve reacts at all, which it did….  
But with lido. one can get up to 4 hours PF…..
might get slightly longer….. for me it helped to skip
one attack…..
 
Michael
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Re: Suboccipital injection - W/UPDATE No. 1_9
« Reply #58 on: Mar 29th, 2008, 9:12am »
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Michael,
 
Good on you for sharing so much detailed information with us on your experiences with the Suboccipital injections.  I have a feeling you are blazing a trail other cluster headache sufferers will want or need to follow.
 
Take care,
 
V/R, Batch
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Re: Suboccipital injection - W/UPDATE No. 1_9
« Reply #59 on: Mar 29th, 2008, 1:54pm »
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Looking forward, plans, risks, adverse effects, and a lot of hope, using,
 
Sub occipital injection with a mixture of rapid – and long-acting steroids
in cluster headache
.
 (the “Injection”)
 
 
(I will have an updated Excel table soon)
 
Adding Lithium to the treatment, trial.
 
Negative / Positive effect and evaluation of effectiveness,
Advantages / disadvantages, in light of the previous preventive /abortive base
treatment.  
 
The adverse effects of Diprophos / - mite.
The use of the “Injection” dose bring some adverse effects.
 
My experience does show that I develop some dizziness, Euphoria, insomnia, mood changes, personality changes, aggravation, at times hypertension /active.
No real physical adverse that can be judged by me.
 
There is a paramount need for regular tests, to ensure known health risks do not accrue.
As in any other use of “aggressive” medication.
 
I do not have a problem with the “adverse” effects, which are mostly, if not all of short living, nor does my family, as we were informed (by the clinic, self research, and help from our “CH family”, help I am very grateful for) about the risks and adverse effects that can / will be part of the treatment.
 
I do think that the calculated risk, that is, reduce the “excessive” and necessary use of triptans is a positive gain, a massive reduction of the dependency on the triptans is a big advantage.
 
The reduction and dependency on the verapamill, which in the quantities we take is a high risk factor for the heart, for almost all of us, I had to go to as low as 120mg / day, due to “stressed”  heart caused by excessive use of verapamil, with
120mg its better to “get off” it all the way, as the effect is below marginal!
Still I will be continuing the “low dose” to maintain a “base” in the case I will
have to depend again on the use of Verapamill.
 
I will start (in 2-3 weeks) a “combo” trail with Lithium, try and “bridge”
the periods I am prohibited from taking the “injection”, as there is no real
research done with such “high” repetition of the “injection” only a few case
studies, we try and see what, if at all, are the long term effects on me, in
the intervals of a “Full dosis” once every 3-4 weeks, depending on the effectiveness of the “injection” preferably every 4 weeks, to prevent any damage to my body.
The lithium is a known and well researched preventive, partly used by our little community, with, if I did my homework right moderate to good results. The use is recommended by J. W. Lance & P. J. Goadsby in the book
 
 
and by other respected health
specialist (Neurologists), specializing in cluster headache research, as well
as by prominent Pain management specialist researching CH,
The systematic will be, starting at a low dose within the “window” recommended
in treating CH and try to find the “right” quantity to fit my needs, all that
depending on the lab. test done during the beginning of the treatment, blood and
other risk factors will be closely monitored, to ensure reduced known risks
as well as try to identify potential other adverse effects.
 
 
We do hope, as the experience shows in the little research done with Lithium and CH,
and pain management for CH with positive results, combined with the current treatment i.e. the “injection”, will achieve a passable, if not more, result.
With a target of about 120-150 pain free days a year.
This is purely a statistical number, but not an overly optimistic goal, or unrealistic target, as the pulmonary results (of the “injection) show.
 
O2 is and will stay a cardinal part of the abortive base treatment with a flow of 20-22lt/min.
 
I am sailing into the horizon filled with hope and conviction….
„Doubt cannot override a certainty” ( the talmud)
 
Michael
 
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Re: Suboccipital injection - W/UPDATE No. 1_9
« Reply #60 on: Mar 30th, 2008, 7:05am »
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updated Excel table of my "Injection"
 
http://www.clusterheadaches.com/michael/injections.xls
 
I had a PF day Sat. March 29.2008 and it looks like I am
looking at a PF day today..... Sun. March 30th
 
If any one has a inquires, or comment, do let me know
or if the Excel table is not totally clear I will try and give more inf. if needed
 
“Who is rich? He that rejoices in his portion” (Talmud)
 
and 2 days PF is just simply a blessing..... and
more then happy about it.
 
Michael
 
DJ TKS. so much for your help!
 
(su.30.0308_1359)
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #61 on: Mar 30th, 2008, 2:31pm »
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Excellent news Michael !  Smiley
 
I am very happy for you.  
 
I wonder though, if the injections work better this time compared to the one before Paris, would you say stress was playing havoc with your head then ? or are you still not too sure ?  
 
Thanks Michael   Kiss
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #62 on: Mar 31st, 2008, 6:49am »
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on Mar 30th, 2008, 2:31pm, Annette wrote:

 
I wonder though, if the injections work better this time compared to the one before Paris, would you say stress was playing havoc with your head then ? or are you still not too sure ?  
 

 
Annette,
 
I would not speculate, and say it was the stress,
as the “failed Injection” could be an
out come of other factors, such as accuracy in placing
the injection, getting the “full dose” in, it is  
a “granulated material” and it can happened that
not all the for seen quantity “got” in right, and some
other uncontroleble factors that we speculate about
but do not know or totally understand, time will give
us a better insight to all this process.
 
 
An observation I have made yesterday and today
It “feels” like the attack tries to “hit”, at the normal time,
but then it is blocked on track, the feeling is of just
a little sting for about 30 sec. which then seem to
be blocked, I wonder is it my imagination, or for
real…..  
 
 
 
Michael
 
(  Mo. 310308_1398.)  
 
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #63 on: Apr 2nd, 2008, 1:11pm »
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One more observation that I have made after having
the “full dose” of the Injection,
Heartburn, something I have never experienced before,
unless when I  overate, namely heavy faty foods like
deep-fried goosefat, it’s very similar to Pork-Rinds,
just more delicate and Kosher…… and I didn’t have
any faty food in the past few days….
 
I have to admit I am not certain it is from
the “Injection” during the times I “got” only
half of the dose it didn’t occur (heartburn), but the closeness to the  
Injection date indicates a high probability that it occurs
due to the “Injection”, will be able to have a better indication
after the next “full dose”.
 
Michael
 
 
WE020408_1460
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #64 on: Apr 4th, 2008, 6:54am »
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One week Pain-Free,
 
Injection Fri. March 28.2008
today Fri. April  04.2008
 
I am very gratful.... and happy....
 
wonder.... how many more days
 
Michael
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #65 on: Apr 4th, 2008, 5:21pm »
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on Apr 2nd, 2008, 1:11pm, wildhaus wrote:
One more observation that I have made after having
the “full dose” of the Injection,
Heartburn, something I have never experienced before,
unless when I  overate, namely heavy faty foods like
deep-fried goosefat, it’s very similar to Pork-Rinds,
just more delicate and Kosher…… and I didn’t have
any faty food in the past few days….
 
I have to admit I am not certain it is from
the “Injection” during the times I “got” only
half of the dose it didn’t occur (heartburn), but the closeness to the  
Injection date indicates a high probability that it occurs
due to the “Injection”, will be able to have a better indication
after the next “full dose”.
 
Michael
 
 
WE020408_1460

 
 
Michael,
 
Although the steroid in the injection can cause gastric side effects such as heartburn, lithium can also do this.
 
" Lithium may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:  
 
restlessness  
fine hand movements that are difficult to control  
loss of appetite  
stomach pain or bloating  
gas  
indigestion

weight gain or loss  
dry mouth  
excessive saliva in the mouth  
tongue pain  
change in the ability to taste food  
swollen lips  
acne  
hair loss  
unusual discomfort in cold temperatures  
constipation  
depression  
joint or muscle pain  
thin, brittle fingernails or hair  
 
 
This is from  
 
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a681039.html#side- effects
 
Just keep that in mind.  
 
Very happy to hear you are painfree  Smiley
 
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #66 on: Apr 6th, 2008, 11:44am »
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Good life is over..... Agin
I am not complaining, its just a fact
 
Hits are back......  only sporadically,
and low-mid level...... but back.....
 
will up date later…..  with thoughts
and plans….
 
Michael
 
sun060408_1563
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #67 on: Apr 6th, 2008, 5:35pm »
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Awwww ... sorry to hear that Michael  
 
HUGS and painfree wishes to you.
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #68 on: Apr 10th, 2008, 2:04pm »
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Hi
 
As I have mentioned a few days ago, I am trying to sum up (again) my thoughts,
latest experiences, and observations.
 
The Injection (Suboccipital injection with a mixture of rapid- and long-acting steroids in cluster headache), is a plausible and credible alternative treatment for Cluster headaches, the way I experience it,
although the quantity  / repetition of the Injection as well as the duration of effectiveness are to be still
properly determined.
 
Trying to sum all the “negative” and adverse effects I have experienced during the period of
this journey, they eclipse / pale in comparison with the positive experience I have enjoyed, namely pain free – time, and a high decrease of number of attacks in the “in between” time as well as "lower" level of hits.
 
We do have to bare in mind, this is not, in no way a cure, but it is one more way / alternative to battle
Cluster headache, a way that is “less” aggressive to our body then Triptans or Verapamill,
the treatment has to be closely monitored by professional health-care personal, to avoid possible
“negative” and adverse effects, and carried out by an anaesthesiologist, with the proper knowledge
and equipment.
 
From the cost per treatment, the cost amounts to the cost of 1 tank of O2 (20lt) or about 1.5 Zomigs (calculated in Switzerland) and the effect is measured in days, not hours.
 
And to my head at the moment, that is the hits, seems like as soon as  I am under stress,
at work I get hits, don’t understand it totally, but the hits stay in "tolerable " level..... under
the “injection” or so I think…. and feel.
 
Will Start next week (Fri. / Sat. April 18 /19 2008.) the tests before starting Lithium, and  
some “brain” scans, just so the head is still monitored….  MRI, EEG, and some other “mid evil”
methods the Neuros have, I start to wonder if my brain shrank…. or evaporated…. otherwise
why would they neuro look for it…..  with so many deferent instruments…… and methods…..
On the other hand it seems like they care……  or do they look to make money on my brain…
They do care! I know, and try to help……  I just hate to be at the clinic, and all the lost time,
I would rather spend at work…….  doing what I like…..
 
Michael  
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #69 on: Apr 15th, 2008, 1:11pm »
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The Injection (Suboccipital (GON) injection with long-acting steroids in cluster headache)
did not render the desired / yield effect, as it was attained in the study done in Italy and Belgium, up to 8 weeks of effectively pain free time.
 
I have experienced “only” one week of pain free time on the Full dose, [long acting salt of betamethasone (dipropionate 12.46mg) rapid acting salt of betamethasone (disodium prosphate 5.26mg)
mixed with xylocaine 2% (verumgroup) and Lidocaine], the same pain free time experienced with ½ a dose.
 
I do not know the reasons for the “failed” effect, even so, in comparison to the achieved (reported) results
of the study I have yield “only” up to 1/8 of the achieved effect in the study, I will go on and try
to use the “Injection” as an alternative to “fight” clusterheadaches, and (as reported) will try and add to
my preventive treatment Lithium, with the hope that the combination will add to the effectiveness of
the “Injection”.
 
I think its time to stop reporting regularly on this board about the on going “try”, unless there is a  
dramatically improvement in the desired results which would be of interest to some of us.
 
Michael
 
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #70 on: Apr 23rd, 2008, 1:19pm »
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Quote:
I think its time to stop reporting regularly on this board about the on going “try”, unless there is a  
dramatically improvement in the desired results which would be of interest to some of us.  

 
There is a big change, just the wrong way....
 
As I can not do the „Injection“ for another week.
I have started the Lithium 6 days ago and the
Blood tests are due tomorrow, to verify the
effects of the Lithium on my organs, and then
one more week to monitor the effectiveness of  
Lithiumon my head.
My CH situation deteriorated,
back to Square one, up to 7-8 attacks a day (what’s new is that most
are day attacks) and with mostly high intensity, up to K8
some can not be aborted at all, not with O2 nor with  
5mg Zomig Nasal….  It effects my work, had to give
up twice work, could not “contain” the CH and get
it under control and it affects me psychologically…..
 
I will have a date tomorrow for next week Friday
Mai.02.08 to have the Injection done, I need a brake
even if it’s for a week only, even if its for a few days
Just need a brake!
 
Michael
 
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #71 on: Apr 23rd, 2008, 1:26pm »
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I'm sorry Michael.   hug We're with you brother... You are never alone...
 
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #72 on: Apr 23rd, 2008, 9:50pm »
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Michael,  
Glad you got as much pf time as you did.  My doc is giving me Serapin inter-cranial injections in the same points you have shown in your illustrations.   I am also getting them at the hairline or about 2" above my eye brow at the 2:00 position, using the eye as a reference point.  They seem to be doing some good.  The cocktail is Serapin, Pred and benzocaine.
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #73 on: Apr 28th, 2008, 9:05pm »
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Michael,
 
I am so sorry.  I'm glad you got that week.  But I'm just so sorry.  I was so hopeful this was going to work for you (and others).
 
Hang in there,
 
Laurie
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Re: Suboccipital injection - W/UPDATE No. 1_10
« Reply #74 on: Apr 29th, 2008, 1:46pm »
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Just for the record…..
The Injection did work!
 
Not as well as we have planed, and hoped for,
but it did give me after the Injection a week of PF time, (but one time)
We did look for up to 8 weeks, benign optimistic, but one week is good,
it is very good (would give me per year up to 22 weeks of PF),
 and after all the blood tests, and other I have been doing the past few weeks
(2 weeks), have all came very good back, so no adverse (negative) effects
on me.
 
I have also started the Lithium and am on 2 x 450mg. a day that is 900mg /day
Morning / evening….  and all the tests (blood) have been very positive as well.
 
So now we (the dr’s team me and my wife-Marta) have decided to combine
both treatments, as a “combo” preventive with the hope that it will give me
a longer starch of PF time, the injection: 50% of the quantity every 2-3 weeks
and Lithium at a level of 900mg a day, all this will be closely monitored to
ensure the “safety” of this combo, and no adverse effects, on me.
So Friday is Injection day….  and if all goes well I will be PF for a week
I do pray for more, I am just realistic now, dreams are good, but reality
is somehow, most of the time different….
 
Michael
 
 
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« Last Edit: Apr 29th, 2008, 1:48pm by wildhaus » IP Logged


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