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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Suboccipital injection http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1212302227 Message started by wildhaus on Jun 1st, 2008 at 2:37am |
Title: Re: Suboccipital injection Post by Batch on Jun 1st, 2008 at 8:55am
Michael,
Thanks for the update. If cutting the frequency of your attacks to one every 1.5 days isn't a success, it's very close to it. Great news. V/R, Batch |
Title: Re: Suboccipital injection Post by wildhaus on Jun 7th, 2008 at 2:24pm
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 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 |
Title: Re: Suboccipital injection Post by wildhaus on Jul 25th, 2008 at 4:29pm
So, the results are in…. (endocrinology tests)
and it’s not what I was hoping to hear….. I will give the correct and full info as soon as I have it in English and use the proper terms. In short, my adrenal gland seems to have stopped to function the way it should, that is to produce some essential hormones – namely Corticoid “Steroid hormone synthesised by the adrenal cortex – Corticosteroids are a class of steroid hormones that are produced in the adrenal cortex. Corticosteroids are involved in a wide range of physiologic systems such as stress response, immune response and regulation of inflammation, carbohydrate metabolism, protein catabolism, blood electrolyte levels, and behavior. “ (Wikipedia) The “bright” end is that it can be compensated by medication….. There are some technical dawn said…. and some procedural stuff that come with it…. all of it I will fully describe…. As cynical as I am I find all this tolerable….. and will deal with it but the people that surround me find it (mildly put) intolerable, namely “Corticosteroids are involved in a wide range of physiologic systems such as stress response” and my response is at time way out of the normal…… And then agin one day with out the pain above my right eye is a gift a week is La dolce vita….. and I would like to keep this settlement of La dolce vita…. so I will have to take the good and all that comes with it. To the GON…. we are using a new method of infiltration.. slightly lower then where we have started….. and using a Doppler ultra sound…. the system and the “position” provide a higher efficiency, and there for a higher rate of successes, I will post photos. in the next few days….. after my visit to north Italy – the area of Merano. Michael |
Title: Re: Suboccipital injection Post by sandie99 on Aug 2nd, 2008 at 3:51am
Thanks for the update, Michael! :)
Sanna |
Title: Re: Suboccipital injection Post by Garys_Girl on Aug 6th, 2008 at 7:26pm
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 |
Title: Re: Suboccipital injection Post by wildhaus on Aug 28th, 2008 at 2:32pm
It is, by now some time since I have posted and updated our little
community about my Injections…. that is the GON treatment I am undergoing in hope that I will get some substantial PF time. The target of substantial PF time (it is a relative / subjective term, and I am very careful using this term – “substantial PF time” ) has been achieved, about 1/3 of a year PF, that is 120 days PF and another 50-60 days with only 1-2 attacks a day with a lower “magnitude” (These are still a prognosticated No’s. based on the accumulated data until now) are for me as a CCH’er (used to have an average of 5 attacks a day with 7-8K average) a great achievement and I am grateful for every day I have without fighting the malady we all have been doomed to share. BUT With every “up side” there is bound to be a “down side”, and the adverse reactions to the treatment are significant, and as much as I would like it to be different it is still very significant! Due to the semi-high quantities of cortisone used with the injection I have developed a ‘secondary adrenal insufficiency’ ------- which is a very “un-happy” situation, though a treatable one and it is a reversible situation; but never the less, an unsettling and worrisome situation, as I have to chemically balance my system with daily intake of hydrocortisone. I am under constant and close monitoring, to prevent any further deterioration in the situation and to prevent any further / added complications I will go on and use this method – The Injection, after long contemplation and weighing all the known’s and possible “un known’s” I still come to the conclusion that every PF day I get is a MIRACLE, and I am simply and humbly grateful for this blessing! in other words I am “commited” to the “Injection” with the adverse effects. I am very sorry I can not hauler I HAVE THE ANSWER, I wish I could. it’s a set back from the “road map” I have “drowned” my self, but with the help of the Dr’s at the pain clinic and the neuro clinic as well as the Dr’s at the endocrinological institute and some others BUT MOST OF ALL THE LOVE AND SUPPORT OF MARTA AND THE BOYS I will be (I believe, and hope) back on the right track….. its just patience and faith! I will ask DJ to help me post the excel sheet again with all the info. and treatments I have accumulated for all that might be interested….. Michael 280808242 |
Title: Re: Suboccipital injection Post by Garys_Girl on Aug 28th, 2008 at 3:46pm
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 |
Title: Re: Suboccipital injection Post by thebbz on Aug 28th, 2008 at 4:05pm
Any pain free time is subtantial Micheal. Glad your getting some relief. You deserve it.
all the best to you. :) thebb |
Title: Re: Suboccipital injection Post by Agostino Leyre on Aug 28th, 2008 at 4:52pm
Sorry to hear about the adverse condition from the treatment. I am hoping that all goes well for you.
|
Title: Re: Suboccipital injection Post by wildhaus on Sep 8th, 2008 at 2:37pm
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 080908320 |
Title: Re: Suboccipital injection Post by MJ on Sep 8th, 2008 at 11:25pm
wildhaus.
I have followed your journey with this and your devotion with open eyes was admirable. So many of us have followed varying paths to reach that elusive feeling of being without pain. You are a pioneer and a teacher to all. Good luck with however you proceed. |
Title: Re: Suboccipital injection Post by Pixie-elf on Sep 8th, 2008 at 11:35pm
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... |
Title: Re: Suboccipital injection Post by George_J on Sep 9th, 2008 at 1:13am
Michael, many thanks for your systematic reports on your experimental treatment with this method. I've been following it with interest. It's valuable information, and has been most informative. I commend you for keeping us so thoroughly informed.
I'm sorry to hear that substantial side-effects have shown up--but I'm hopeful that these effects will be quickly resolved. All the best, George |
Title: Re: Suboccipital injection Post by wildhaus on Sep 9th, 2008 at 3:13am
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 |
Title: Re: Suboccipital injection Post by Rolomatic on Sep 9th, 2008 at 4:14am wildhaus wrote on Sep 8th, 2008 at 2:37pm:
I’ll have to tell you that you are braver than I considering that before I went on lithium (and I still get nailed 1-3 a day) I got hit 6-10 a day with K7-9 and an occasional 10 just to let me know that it can get that bad. I went in for an occipital nerve block one time and I’ll never let them (the nero) jab me in the head with a 3” needle again! Botox X4 was a bust also. I sincerely hope the best for you on this. I know what it is like to think there is no end in sight, as I am a chronic sufferer 6 yrs running. O2 (especially after I learned the flow & mask requirements) has helped me a lot. Also because its effects are felt in minuets, when I get to it fast it saves me from a lot of superlatives and excited utterances! I hate to hear that any one of us should feel so bad that we would have to rely on the hospital docs for relief (cause they are usually a joke and the last time I went in to the ER, they thought I was crazy dragging in my own O2 and telling them to get the DHE like I was a doctor or something). PFW To you! :) Roalnd. ;) |
Title: Re: Suboccipital injection Post by wayne mc on Sep 9th, 2008 at 6:14am
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. |
Title: Re: Suboccipital injection Post by wildhaus on Sep 9th, 2008 at 7:34am
1.) I must be very lucky, my Dr’s at the Medical centre in St. Gallen are very helpful
opened to new treatments and are very flexible, and genuinely concerned about my well being, and constantly monitor, in coordination with my Fem. Dr. my situation be it blood tests or other necessary test. And The Neuro surgeon has set the first tests for the up coming surgery for the 26 of this month and tentatively surgery for October. 2.) My GON was done with a 26 gauge siring, using Lidocain to numb and very slowly injected the Betametason to avoid any pain and after pain, I have to say the Anaesthesiologist had taken a extra effort to spare me the pain and agony that could come with the GON, with utmost success! I must say the team that helps me is a caring and genuinely concerned team, I trust them and in return they get all the help, info. and data I collect, an honest, precise and emotionless (as much as possible) assessment of every stage of the way, I try to keep my info to the tangible info. and less to the speculative and subjective, something that helps in choosing the right alternatives, or the most likely tests to avoid lasting and short term adverse effects. As you can see I keep an Excel Table with all the info related and a CH dairy (electronically) which is a very helpful and handy information data base, something I recommend to every one, it dose need some discipline in doing on a daily base, but after a short time it becomes a habit and there for a very good way to judge in retrospective the situation, and a very helpful tool for the treating Dr’s. I will still try to inform you all, about the developments and the treatments to correct the existing situation. Michael |
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