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I am now 16 days past the last „Injection“ and so far so good,
the current combination of meds. is giving me a relatively
peaceful time (1 attack every 1.5 days), this fact is in no way
a success, it is a mile stone on a long road, in the search for a
comprehensive treatment, it is only a little chunk in the fundaments,
but its a start, (one more) in the effort to give us (some of us) a good
way in battling our common malady.

What will be new, if the blood pic. and the endocrinologists
recommendation to reduce the frequency of the Injection, we will try
and use again the “GLOA” - using Bupivacain or Buprenorphin
as a block, and alternate once “Injection” and once “GLOA”

As an anecdote, some of the adverse effects of the lithium are
now reduced to the level of “tolerable”, or "void", namely
the O2 abortive effect is back to its normal effectiveness, and that
makes me happy! I “love” my O2.

Michael

It’s been 3 weeks since the last “Injection”
with a  good rate of success, that is
0.85 attacks per day (less than 1 attack a day
as opposed to up to 7 attacks a day)
I went to the pain Clinic yesterday at the
St. Gallen hospital, and had another “Injection”
done, with a high hope that the peaceful time
with my head will hold just another few days,
or even better a few weeks.

The open quotation that we still have is what are
the possible long term adverse effects, risks, as
well as short term risks (immunological, endocrinological
and other) that might exist, in terms of risks
in case of emergency hospitalisation, surgery,
and other medical complications.

All this open questions will be partly answered after my upcoming
visit to the hospital, endocrinological and Immunological
institute as well as the Haematological Institute.

The long term effects, well, I have to be honest, only time,
plenty data collecting, dedication on all ends, will
give answers, and most likely more questions and
speculative / argumentative answers.

Most of all so, I am happy I use only O2, and in 3 weeks
only 2 Zomigs, very little Verapamil (80mg/day) and a low
dosage of Lithium.


Michael

As promised I am adding 3 pic. of the procedure (GON) using the Doppler
ultra sound  at the “lower” location on the skull, about 1.5 inc. lower then
the original spot, I must say it seems to do as good as the old location I hope
for better results….. and there for lower dependency on the Betametazon - GON.

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Michael

Michael,

Thank you so much for continuing to post updates, progress, changes, and results. 

I'm so sorry to hear about the results of the endocrinology tests - but very glad the problem is treatable.

I really hope the new location works to reduce the amounts needed!

(((((hugs)))))

Laurie

Michael,

Thank you again so much for being so thorough in your posts!  I think it's wonderful of you to be so attentive and share all of this.

Again, I'm so sorry about the side-effects - but you've obviously made a very informed decision, and I'm so thankful it's all been worth it!

I'm so glad you have such a supportive family!!!!!!!!!!!!!!!!!!!!!!

Laurie

Sorry to hear about the adverse condition from the treatment.  I am hoping that all goes well for you.

After a visit today to the hospital, for another injection (GON) and to talk to the neurologist, about the latest
results from the Endocrinology and the (by now limited options) for treatment….

After the meeting with the neurologist, I had to go to the department of Osteologie  ( measuring the bones
denseness) and meet with the specialist…..  well this meeting didn’t go very well….  I was told that the
cortisone treatment effects my bones and with very high likelihood has caused Osteoporosis….  

All that after I have told earlier to a “double attack” from the pain therapist and the Neuro. to start and consider
more pragmatic ways to fight CH and that are less aggressive then the GON, and my answer was why should I
I get ample PF time, and am fighting the adverse effects that come with it.

But after the new addition, Osteoporosis, I have right then and there, after a call to Marta, notified the Neuro / pain
that the alternative they have suggested is more then welcome, and they should do all what is needed and initiate
a meeting with the neuro surgeon, as well as the endocrinologist for a (at the moment) implantation of brain
stimulators, occipital brain stimulators.

I know I have to do something, The GON is a good alternative, just not for me, My reaction to the cortisone is way
too strong, and out of the norm.

I have delayed the Operative (surgical) alternative, but now the options are narrowing rapidly, the alternatives,
which way I look are non apealing, or un acceptable for me….. due to high risk at my job, namely the CB alternative,
which was brought up in the meeting with the neuro, but is due to its legal status is out of reach for me, even tough
it could be and with some likelihood a good alternative.

Now that I have to start and befriend my self with the “un spoken” alternative, and start from square one, I feel
frustrated, disappointed, and in a way foolish, I hang my hopes way to high, even tough I was aware of the possible
adverse reactions, and still went for it, and now I have some additional problems which are not trivial, and it will take
some time (about 1 year) to get it back to normal or at least to tolerable status.

I am not defeated… just a lost fight,  I am still out there to fight, I will win the battle…..  and live my life, as I do now
as in PF times  as in fighting times, happily and fully with my supporters bunch.

Michael

Wow, thank you for posting all of this here...

I was keeping this as an option I was willing to consider, but hearing that it caused you osteoporosis has changed my mind, as I'm recovering from osteoporosis. (Had it since I was 9.) I'm sorry that it did this to you. The treatments for osteoporosis have come a long way, hopefully they'll find one that works for you fast.

Good luck, and PFDAN...

It is ME that has a problem with the GON, my cortisone tolerance is equal “0”
and there for all the problems….   the GON is a very good alternative, providing
the cortisone tolerance is good (can be tested), and as soon as one monitors closely the effects
and possible adverse effect, the risks are most likely kept under control.

I will have 2 more GON’s and then the surgery, to become a cyber / electro brain man……

Michael

Sorry to hear of your ordeal,
During march last year, I had an operation to cut the Greater occipital
nerve. (I have also had these injections that you speak of, man they hurt.) When waking from the operation I was in the middle of a kip 9.
the nurses were very concerned because I was in pain. So they called the surgeon, by the time he arrived the ch had eased of abit. He told me that this attack was a phantom ch attach.
During the next couple of months the attcks continued 1-2 per day and always kip 7-8 or higher contacted the neuro several times about this and his answer was always the same, Phantoms.

This cycle lasted until 23 november 2007 then stopped. (also had botox, another big hurt)

Then PF until 2 weeks ago , Back to the old grind.


Sorry This  is so short, don't  really know doctors mumbo, but do know
that these are NO PHANTOMS.


Went back to neuro, and he spent the entire time showing me
reports to reassure me that he got the right nerve.

Still said they were PHANTOMS

Anyway this is my experience hope it helps.



regards

wayne.