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Title: Suboccipital injection - W/UPDATE No. 1_11 Post by wildhaus on Jan 27th, 2008, 5:25am 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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Title: Re: Suboccipital injection Post by DennisM1045 on Jan 27th, 2008, 8:42am Thanks for sharing this Michael. I hope it buys you a good long break. -Dennis- |
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Title: Re: Suboccipital injection Post by sandie99 on Jan 27th, 2008, 9:42am I wish you lots of PF time, Michael! :) Sanna |
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Title: Re: Suboccipital injection Post by MJ on Jan 27th, 2008, 10:20am 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/8525697700573E1885256DB1004CA8E9 |
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Title: Re: Suboccipital injection Post by wildhaus on Jan 28th, 2008, 1:51pm I am adding the "Pic." of where you find the N.occipitalis major (in red) and to where the block was made http://im1.shutterfly.com/procserv/47b8df09b3127cceb42e36d6c52300000025100AbMmbFu4YsWNA Michael |
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Title: Re: Suboccipital injection Post by George_J on Jan 28th, 2008, 1:57pm 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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Title: Re: Suboccipital injection Post by Gator on Jan 28th, 2008, 2:23pm 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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Title: Re: Suboccipital injection Post by cluster on Jan 29th, 2008, 7:25am 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/PIIS030439590500374X.pdf pf wishes! Friedrich Edit: *** The free trial period has ended. *** |
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Title: Re: Suboccipital injection Post by Batch on Jan 29th, 2008, 8:30pm 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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Title: Re: Suboccipital injection Post by wildhaus on Jan 30th, 2008, 1:48pm 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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Title: Re: Suboccipital injection Post by artonio7 on Jan 30th, 2008, 2:05pm on 01/30/08 at 13:48:01, wildhaus wrote:
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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Title: Re: Suboccipital injection Post by Garys_Girl on Feb 2nd, 2008, 4:27pm 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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Title: Re: Suboccipital injection Post by wildhaus on Feb 3rd, 2008, 6:58am 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:
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:
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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Title: Re: Suboccipital injection Post by E-Double on Feb 3rd, 2008, 7:59am hang in brother |
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Title: Re: Suboccipital injection Post by hotprestwich on Feb 3rd, 2008, 11:06am 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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Title: Re: Suboccipital injection Post by Garys_Girl on Feb 3rd, 2008, 7:38pm 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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Title: Re: Suboccipital injection Post by lennycohen on Feb 4th, 2008, 5:29pm 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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Title: Re: Suboccipital injection Post by wildhaus on Feb 7th, 2008, 12:27pm 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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Title: Re: Suboccipital injection Post by DennisM1045 on Feb 7th, 2008, 12:30pm I hope it holds forever ;) Thanks for the update. -Dennis- |
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Title: Re: Suboccipital injection Post by wildhaus on Feb 8th, 2008, 3:10pm Hi all, I would like to add some more info to the Suboccipital injection, that was given to me by a fellow CH'er, http://www.clusterheadaches.com/michael/1985_steroid-nerve.pdf http://www.clusterheadaches.com/michael/2002_blockade.pdf http://www.clusterheadaches.com/michael/2006_comment.pdf http://www.clusterheadaches.com/michael/2006_single-injection.pdf http://www.clusterheadaches.com/michael/2007_chronic-blockade.pdf And an update of my on going treatment in xls. format: http://www.clusterheadaches.com/michael/michael-table.xls I have to say that until today I didnt get any hits since the last "injection" on Feb. o5.2oo8 And Tks. DJ for the help Michael |
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Title: Re: Suboccipital injection Post by Annette on Feb 8th, 2008, 4:57pm Thanks Michael for sharing, its very interesting :) Hope the second shot works for a very very very long time :-* |
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Title: Re: Suboccipital injection - WITH UPDATE No. 3 Post by sandie99 on Feb 9th, 2008, 6:51am 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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Title: Re: Suboccipital injection - WITH UPDATE No. 3 Post by Batch on Feb 9th, 2008, 7:58pm 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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Title: Re: Suboccipital injection - WITH UPDATE No. 3 Post by otakuhouse on Feb 9th, 2008, 8:15pm Much thanks man, we're rooting for pain free days for you. |
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Title: Re: Suboccipital injection - WITH UPDATE No. 3 Post by wildhaus on Feb 10th, 2008, 9:45am one more (little) bit of info. http://homepage.bluewin.ch/mbnservices/mediac/400_0/media/DIR_123/DIR_10301/13202.jpg and next time I go Marta will try and do some Pic. Micahel |
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Title: Re: Suboccipital injection - WITH UPDATE No. (3)_4 Post by wildhaus on Feb 13th, 2008, 2:41pm So after 6 days (injection on Tuesday Feb. 05.08 ) it seems the effect started to wear off.... and the hits, started Monday Feb. 11.08 (one (1) a day, at 11PM) and some shadows, started to hunt me again today..... Now I will wait until Feb. 27.08 to try and see if it will work again.... just with a full dose this time.......if the doctors will give me such a large dosage at all Until then..... O2, Zomig as abortives, and Verapamill at a low dose of 160mg a day as preventive...... To sum the short experience..... in any case it is worth the effort, evry PF day is a blessing..... (for me) and on the long way to finding a good and comprehensive preventive, it is good step toward the goal, I will bend the words of a very famous American Astronaut (Neil Alden Armstrong) That's one small step for CH research… one… Big leap for (my) Clusterheadache… . Still set on the course of trying ....... still set on working with the pain klinik, and neuro. to find a way. Michael |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_5 Post by wildhaus on Feb 21st, 2008, 2:17am So after 14 days (Today Feb. 21.08; injection on Tuesday Feb. 05.08 ) the effect is totaly wearen off.... The hits, started Monday Feb. 11.08 (one (1) a day, at 11PM) and some very light shadows. Now (from Feb. 20.08 ) I am back to 5 and more a day with an avrage of 6-7 Kip. I did "map" on 3D my head for the neuro, I add an image to this post.... http://im1.shutterfly.com/procserv/47b8dc01b3127cceb5392e75643400000025100AbMmbFu4YsWNA I will NOT wait until Feb. 27.08 to try and see if it will work again.... I will go ahead and do it Friday Feb. 22.08 (If Dr's will do it) . Got used to PF and / or almost PF, and have to say it is so good to be PF!!! Michael (Vaduz 210208_539) |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_5 Post by Charlotte on Feb 21st, 2008, 2:28am I'm sorry it has worn off. Charlotte |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_5 Post by DragonSlayer on Feb 21st, 2008, 3:24am Sorry it's back Michael!! All my best wishes for PF time for you!! |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_5 Post by wildhaus on Feb 21st, 2008, 1:09pm The anasthesiologist from the Pain clinic in St. Gallen just called and he will go ahed and do the "Injection"........ And then me off to Paris France for a week....... just not under romantic trip...... simply work.... and with out CH I hope..... Michael Wildhaus 210208_567 |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_5 Post by Ace_Sterling on Feb 22nd, 2008, 12:07pm Michael, I have had these injections as well. They are GREAT for short-term relief. I'd much rather deal with the pain from the injection site than a CH. I didn't see anyone post about the frequency of the injections being a danger to your neck...(i.e. the steroids wearing away your muscle)...must be careful. I mix it up so I have steroids once a month and xylocaine and other drugs in between. One thing I am thinking of trying is getting an injection of steroids at the occipital insertion point in the neck and purposely causing a little muscle atrophy. From different studies and treatments on me I know that the insertion point for the occipital nerve can play an aggravating role during a CH attack. I am going to try and "open up" this insertion point a little bit so when the nerve swells there will be room for it to do so without the muscle cutting off blood flow and further irritating the nerve. Keep us posted on your trials and tribulations. And as always...good luck to being PF. -Ace |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_5 Post by wildhaus on Feb 22nd, 2008, 12:09pm today at 15:30 (3:30pm) had another injection.... and this is what it looks like: http://im1.shutterfly.com/procserv/47b8dc03b3127cceb52c29c6b40d00000026100AbMmbFu4YsWNA http://im1.shutterfly.com/procserv/47b8dc03b3127cceb52c29c5353e00000026100AbMmbFu4YsWNA http://im1.shutterfly.com/procserv/47b8dc03b3127cceb52c29c2b40900000025100AbMmbFu4YsWNA http://im1.shutterfly.com/procserv/47b8dc03b3127cceb52c29c0b40b00000026100AbMmbFu4YsWNA Let's see how good it will do this time Michael St.-Gallen 220208_612 |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_5 Post by Jackie on Feb 22nd, 2008, 12:33pm Positive thoughts to you.....let's hope it works REALLY well. Bless your heart..... Jacki |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_5 Post by E-Double on Feb 22nd, 2008, 1:41pm you rock brother |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_5 Post by sandie99 on Feb 22nd, 2008, 1:54pm Michael, I hope so much that it will help you! :) That injection.... :o Looks scary to me. Lots of PF days your way, Sanna |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by wildhaus on Feb 22nd, 2008, 4:49pm As I see it now after the 3rd “Injection” the only open question is: HOW OFTEN CAN IT BE REPETED, AND AT WHAT INTERVAL As in all the studies we have looked at, the Neuro, the Pain specialist and anaesthesiologist, and my self (with the help of some of you), there has been no reference to this subject! I will try and get in contact with Dr. Anna Ambrosini in Italy, and try to find out what is her input on this, as she is the one that initiated this Suboccipital injection and might have some Information that could be helpful, she or her associates did not publish about it (that we could find) in any major Journal. I will try to get a hold of Dr. May in Germany, which has some Experian’s as well. In any case we have decided to go on and use this method in the future as well, and we will monitor the effects on the production of Cortisone in the body as well as “sugar” level, to eliminate (controllable) factors that are known to “suffer” during higher usage of Cortisone and try to monitor other factors, to eliminate (if possible) any long term negative effects. I am very positive that (with maybe some adjustments) this “simple” treatment could bring some light into the tunnel, and could be of help to some of us….. If any one has any reference to a study that has done it repeatedly - Suboccipital injection - injection with a mixture of rapid - and long-acting betamethasone near the ipsilateral greater occipital nerve for the treatment of cluster headache and has published in a journal, do let me know I will continue updating on this thread, as I do believe it’s a treatment with a good potential for some of us, and will try and update the table that DJ has helped me to post on his server and make available to all, bless you DJ! It is not a cure! But it is another (big? ) brick in the wall….. Michael |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by Annette on Feb 22nd, 2008, 5:44pm Thank you so much Michael for posting and sharing your experiences with such details. The photographs, the charts, the links are incredibly helpful. Marta, thank you so very much for taking the photos :-* Wishing you the best of results and that this injection will booster the others making it last for a long long time. Enjoy your work in France and we will catch up again when you come back. :) Much love to you all. |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by Ace_Sterling on Feb 24th, 2008, 4:24am The pictures are helpful. I have found that most docs are not informed about CH and pictures always help. What i don't get is all the posts saying "thanks for sharing" or "thanks for the info" I posted about the occipital nerve and it's involvment in CH and was flamed for not having CH. If the occipital nerve (which is outside the skull) wasn't involved then this gentlemen wouldn't get relief or even try occipital injections. I have done the injection thing. I thought it was widely known as a treatment. But the replies to this post indicate otherwise. I'm just pissed that I got flamed for sharing the same info. I guess I needed pictures. As a side note....I tried verapimil based on info from this sight. It made me pass out and then it activated my CH and it was severe. I have found that a lot of medications that aimed to help CH can actually trigger CH and only work after the dose is increased and you "push" through the CH side affect. Example: "Tramadol" The occipital injections work for a bit. I had one work for 3 days and one work for 3 weeks. It's just a shame you can't get them very often due to muscle atrophy from the steroids. |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by Ace_Sterling on Feb 24th, 2008, 5:16am A couple of things: I noticed that your injections are on the right side. So are your pictures. I have some pictures as well (done by a neurologist) and they are on the right side. So are my headaches. It would be interesting to know if CH is predominately right-sided or left-sided. Michael: If your up to the task...Try a TENS units in between injections. You can get one off the interent or from a physical therapist or neurologist. You have to place the pads higher than any physical therapist would be comfotable with but it is not dangerous. Place one pad on the right side of the scalp in between the occpital protuberance and nuchal ridge. If I was using your picture (the one with the needle) this would be just above and to the left of the injection site. The other pad goes on the neck mucle below and in-line with the top pad. Turn on the TENS unit until the muscle contracts. Set it for pulses (i.e. not constant electricity) You may need to puch on the top pad to get good contact (due to your hair being in the way) The muscle should contract and as it does the insertion point of the occipital nerve will contract and squezze the nerve providing relief and numbing to the area. I haven't heard anyone else doing this but me and you seem interested in trying out different therapies. I would like to know if you get numbing of the entire right side of the posterior scalp. If you do, let me know. This would further promote what the true pathology of CH is. -Ace |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by wildhaus on Feb 24th, 2008, 8:12am Quote:
I am not going to go into this….. as this is a board for Medications, Treatments, Therapies, and if you would like to go into this Pls do it on the General Board! Quote:
“this gentlemen” dose get Relief (look at the info “this gentlemen” gave) as to the involvement of the occipital nerve and CH, or why the occipital block can work for some, just no explanation of why, needs to be deeper researched, the point is that it dose help (for me) and could help other along the way. Quote:
Can’t say if it’s widely known or not, but I am sure most of us are aware of this treatment As I am aware of, OUCH UK has it on its website…. in Mr. Peter Goadsby's presentation at the 2007 OUCH UK Conference! (Provided to me by cluster, will add it at the end of the post) And there are some publications, (I posted some, and I will post some more) but it is still in research and there for not widely used, or recommended, and it is understandable. the long term risks and effects need to be looked at, and other equations that are still opened. Quote:
As I asked above, this is a board for Medications, Treatments, Therapies, and If you would like to go into this Pls do it on the General Board! Quote:
Do not know why it happened or if it is common, I used Verapamill, and it did help, but had to get off it as my Hart didn’t “like” it (BP went way to low, hart rate was of a top sports profi. and frequency problems) …….. but I can say it did help me a lot! Don’t know Tramadol…. sorry cant comment As we try to see if the Block works by it self / and or with O2 I am going to go to only 80mg a day of Verapamill, to singulate the effects of the “injection” Quote:
Can’t say much as we are starting to monitor the effects of the Injection from the next treatment, and we do keep in mind the known side effects, and try to schedule the tremens to prevent any known non welcome effect, and still give me a decent relief from the attacks, it will take some time to determine the right way, and is then the right way for me! and dose not epllay to other, at this point of time, in order to be able to say it can be used for all it needs a larger study. and not just some single case studies, or the studies we have until now, it’s a start, and a very good one! Quote:
It is my CH side Quote:
I don’t know but look it up on the net you might find some answers, can’t say or give you any help on this. Quote:
1.)Don’t know what are TENS units…… 2.)We try to see if the Injection works in combination with O2 only and there for can not add one more thing. we need to stay limited to the line we have chosen! but thanks for the idea….. will ask the Neuro / Pain specialist what she / he think about it. Michael Wildhaus 240208_730 quote from Edited transcript of Professor Peter Goadsby’s presentation to the OUCH (UK) Conference held on Sunday 24th June 2007 at UCL Institute of Child Health, London (on OUCH UK Website) We became interested in the occipital nerve. That is obviously – this is not a person as such. I mean most people don’t turn up with their occipital nerve so easy to find like that (laughter!). It’s not that gory, it’s a little gory I suppose – it shows you what we do. Michael Anthony who is an Australian neurologist taught me to do this. He is so believing of greater occipital nerve injection, he used to get his senior registrar, which I was on one occasion one year, to inject his occipital nerve once a year and he said he never got a headache. I think it was quite a crazy thing to do, but injecting your bosses head was a whole other deal. He kept his hair quite short, so it was easy to do. Those of you who have had this you will know that for some people it is exceedingly useful and for some people it is useless. If it happens to be useful the injection is more or less without side effect. |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by wildhaus on Feb 24th, 2008, 3:06pm Some more info. (given to me by cluster) it is in German, so if you would like to read it, just Google it into English. P8.10 Suboccipitale Injektion von Corticosteroiden und Lokalanästhetika bei Clusterkopfschmerzen: Drei Kasuistiken S. Lanz, D. Boujong, N. Grießinger, R. Sittl, K. Ulrich Schmerzzentrum, Universitätsklinikum Erlangen Einleitung: Bei der Behandlung von Patienten mit Clusterkopfschmerzen fällt der Kopfschmerz-Prophylaxe eine entscheidende Rolle zu. Umso problematischer sind therapierefraktäre Fälle, in denen konventionelle pharmakotherapeutische Maßnahmen zu keiner Kopfschmerzreduktion führen. So möchten wir kasuistisch über unsere Erfahrungen mit dem Einsatz einer suboccipitalen Injektion von Corticosteroiden und Lokalanästhetika bei drei therapierefraktären Clusterkopfschmerz-Patienten berichten. Kasuistiken: Wir behandelten drei männliche Patienten im Alter von 46 (Patient Nr. 1), 47 (Nr. 2) und 51 (Nr. 3) Jahren, die seit 6 bis 8 Jahren unter episodischen (Nr. 2) bzw. chronischen (Nr. 1 und Nr. 3) Clusterkopfschmerzen litten. Bei allen Patienten entschieden wir uns, in Anlehnung an eine 2005 durchgeführte Studie (1) eine suboccipitale Infiltration im Bereich der Austrittspunkte der Nn. occipitales majores beidseits durchzuführen. Die Injektion erfolgte in der Mitte zwischen Prozessus mastoideus und Protuberantia occipitalis externa mit einer Injektionstiefe bis knapp vor das Os occipitale. In leichter Modifikation der als Vorlage dienenden Studie (1) verwendeten wir hierbei 4 mg Betametason in Depotform, 4 mg Dexamethason in schnell freisetzender Form und 1 ml 1% Scandicain. Es folgte hierauf eine Beobachtungszeit von drei Wochen. Auf die Injektion zu beziehende Nebenwirkungen konnten während dieser Zeit nicht beobachtet werden. Verlauf bei Patient Nr. 1: Die im Vorfeld durchgeführte Prophylaxe mit Lithium (nach Spiegel), Valproat (nach Spiegel) und Prednisolon (bis 250 mg/d) hatte keinen und die Einnahme von Melatonin (12 mg/d) einen nur geringen Effekt. Die Attackenfrequenz vor Durchführung der Injektion betrug durchschnittlich drei pro Tag. Leichte Attacken konnten mit reinem Sauerstoff und starke Attacken mit 6 mg Sumatriptan subcutan coupiert werden. Nach der suboccipitalen Injektion traten keine weiteren Clusterkopfschmerz-Attacken in dem Beobachtungszeitraum auf. Der Einsatz von reinem Sauerstoff oder Sumatriptan war somit seit der Injektion nicht mehr nötig. Verlauf bei Patient Nr. 2: Die Prophylaxe aus Lithium (nach Spiegel), Valproat (nach Spiegel) und Prednisolon (bis 250 mg/d) hatte keinen und die Einnahme von Topiramat (150 mg/d) einen nur geringen Effekt. Die Attackenfrequenz vor Durchführung der Injektion betrug durchschnittlich fünf pro Tag. Leichte Attacken konnten mit reinem Sauerstoff coupiert werden, bei starken Attacken wurde anfangs 5 mg Zolmitriptan nasal eingesetzt, jedoch nach Auslösung eines akuten Koronarsyndroms auf 200 μg bis 400 μg Fentanyl in transmukosaler Form (Actiq®) umgestellt, das vorübergehend täglich und mit schmerzreduzierendem Effekt verwendet wurde. Nach der suboccipitalen Injektion wurde über zwei Tage hinweg ein Sistieren der Kopfschmerzen beobachtet, gefolgt von erneuten, aber selteneren und deutlich leichteren Attacken, die nun immer mit Sauerstoff behandelbar waren. Transmukosales Fentanyl (Actiq®) musste nicht mehr verwendet werden. Die Wirkung hielt eine Woche lang, so dass wir bei diesem Patienten die Infiltration in wöchentlichen Abständen wiederholten. Verlauf bei Patient Nr. 3: Die im Vorfeld durchgeführte Prophylaxe mit Lithium (nach Spiegel), Valproat (nach Spiegel) und Prednisolon (bis 250mg/d) hatte keinen und die Einnahme von Verapamil (950mg/d) einen nicht ausreichenden Effekt. Täglich traten vor Durchführung der Injektion durchschnittlich drei Attacken auf, meist davon eine Attacke tagsüber, bei der der Patient reinen Sauerstoff verwendete und zwei Attacken nachts, bei denen 6mg Sumatriptan subcutan eingesetzt wurde. Nach der suboccipitalen Injektion trat nach einem Sistieren der Attacken über zwei Tage hinweg der Kopfschmerz mit reduzierter Attackenfrequenz (eine Attacke pro Tag) auf. Seitdem wurde im Durchschnitt einmal pro Tag Sumatriptan eingesetzt. Schlussfolgerung: Die geschilderten Fälle demonstrieren, dass durch die suboccipitalen Injektion von Corticosteroiden und Lokalanästhetika Cluster-Kopfschmerzen reduziert werden können. Sie zeigen, dass diese Maßnahme auch bei weitgehend therapierefraktären Fällen erfolgversprechend sein kann. Als wesentliche Vorteile sind die geringe Nebenwirkungsrate, die einfache Handhabung und die schnelle Durchfürbarkeit zu nennen. Die Wirksamkeit dieser Maßnahme wurde in bislang einer placebo-kontrollierten Studie belegt (1). Auch hier wurde eine Kombination aus Corticosteroiden (Betamethason) in Depotform und in schnell freisetzender Form verwendet, da sich diese in offenen Studien bewährt hatte (1). In einer weiteren Untersuchung, bei der die Wirkung der suboccipitalen Injektion bei verschiedenen Kopfschmerzformen überprüft wurde, fand man bei Clusterkopfschmerzen vergleichsweise höhere Ansprechraten (2). Weitere Studien erscheinen erforderlich, insbesondere um zu klären, in welchem Ausmaß neben dem lokalen Effekt systemische Medikamenteneinflüsse zu der Wirkung beitragen, ob die gewählte Medikamentenkombination entscheidende Vorteile gegenüber einer Monotherapie bietet und ob Unterschiede zwischen lang- und kurzwirksamen Lokalanästhetika bzw. Corticosteroiden bestehen. 1.) Ambrosini A. et al. Suboccipital injection with a mixture of rapid- and long-acting steroids in cluster headache: A double-blind placebo-controlled study. Pain 2005; 118 (1-2): 92-96. 2.) Afridi S.K. et al. Greater occipital nerve injection in primary headache syndromes – prolonged effects from a single injection. Pain 2006; 122 (1-2): 126-129. Quelle: Deutscher Schmerzkongress 2007: Schmerz in Deutschland - Abstracts. Der Schmerz. 2007 Oct; 21 Sup.1: 1-148. DOI, PDF-Datei. <= Links! - Seite 105. And one more he has send me..... this one in English. Repeated suboccipital steroid injections in cluster headache with poor response to preventive medication D. Samal, M. Vigl, C. Wöber, Karin Zebenholzer Department of Neurology, Medical University Vienna, Austria Objectives Ambrosini et al. (2005) demonstrated the efficacy of single suboccipital steroid injections in cluster headache (CH). We report our experience with repeated injections in a patient with severe CH. Case report In 1998, this male patient developed CH which was chronic for 30 months, episodic for the following 5 years and thereafter chronic again. The attack frequency ranged between 2/month and 6/day with occasional constant pain. Cluster periods lasted 3–6 months and remissions 2–6 months. Treatment with prednisolon was effective only initially. Vera- pamil at daily doses of up to 960 mg was inconsistently effective, nevertheless the patient continued to take verapamil 240 mg daily. Lithium and topiramate were not tolerated, other treatments were ineffective. In March 2006, the attack frequency increased to 5–6/day. Repeated injections with bupivacaine in the left suboccipital region at an anaesthesiological clinic decreased the frequency to 1–3/month. From December 1, 2006, the frequency increased to 2–3/day and constant pain occurred. On December 15 we injected 2.5 ml of a mixture containing betamethasone dipropionate, betamethasone disodiumphosphate and lidocaine without changing the dose of verapamil. Within 1 day the patient was free of attacks, the constant pain was milder but still present. Therefore, we repeated the injection 3, 5 and 6 days after the first one. Since then the patient has been pain-free for 5 weeks up to now. During 9 years of follow-up this was the shortest cluster period ever. Conclusion Repeated suboccipital steroid injections might be useful in CH with poor response to preventive medication. Source: ''Cephalalgia.'' 2007 June; '''27'''(6): 742-3. Poster F073. Michael |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by Annette on Feb 24th, 2008, 9:46pm Thank you very much Micheal :) Do you know the mechanism behind the treatment ? How does it work and why they chose betamethasone with xylocaine ? |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by wildhaus on Feb 26th, 2008, 1:36pm Hi Am in Paris (France) last night got hit, should not have happend, (must be the stress of driving 800 Km in one go) but it did, and it did get to me, couldent help it. I do hope it will let me be tonight - was a long day now out for dinner...... Annette, I cant say I have the answer right now, will have to look into it when I am at home, if evry thing will go right should be at home by Friday; Michael |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by Sandy_C on Feb 26th, 2008, 5:13pm Michael, hang on sweetie. Thank you so much for being a guinea pig and trying this solution to CH. My thoughts and prayers are with you and I hope you find relief. Keep posting the results. It seems you have some success, yet not complete success...YET. Keep the hopes up. Sandy |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_7 Post by wildhaus on Feb 29th, 2008, 12:58pm am home agin...... and would like to add this: http://www.clusterheadaches.com/michael/injections.xls I have to add the xls. table: Had a hit on Monday night.... Tuesday.... Wedensday (x2)... and last night - Thursday (X2) all night time hits...... as I would like to think that it was stress related, and I do hope so, I will try agin another "injection" and then will be able to say it was stress related, or simply it stoped doing "wonders" for me....... still to say the last will have to repet it 2 more times. Tks DJ for your help! Michael |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by wildhaus on Mar 3rd, 2008, 12:12pm The last 2 days Sat. & Sun as well as most Mon. March 03.08 are PF, I just wonder....... but very happy! Michael |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by Annette on Mar 3rd, 2008, 6:38pm Thanks Micheal ! Hope the break through hits were just stress related and that the injections will continue to work its wonder for you. Painfree time is precious ! HUGS :-* |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by wildhaus on Mar 8th, 2008, 2:08am So as of Monday March O3.08 the effect of the injection is off! Attaks, only night up to 3 times..... Will have to see now with the Neuro / Painklinik if and when we can try agin........ Michael |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by Garys_Girl on Mar 12th, 2008, 10:36pm Michael, I'm so sorry they're back, but I'm also really happy that you've been able to experience (what seems like to me) quite a few days of pain free time. 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. I didn't remind Gary, but his 2-year anniversary of being chronic was March 5th. He's still getting hit 5 - 8x per day, most of them K6 - K9 in strength. We work together from home conducting research - but he's down to being able to put in 3 - hours a day of work - and that's on a good day. So I still hold out hope, and thank you for sharing in such an organized and informative fashion your experiences. Ace - sorry you got flamed. Missed your original posts about it. Hope you find more pain free time after the next injection. All my best, Laurie |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_8 Post by wildhaus on Mar 13th, 2008, 1:35pm As soon as I am home agin I will add some more info. and try and update..... Only can say that at the moment I get up to 3 hits at night, and started to get day hits agin....... Oh well, will have to go on and try agin...... Micahel |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by Sandy_C on Mar 13th, 2008, 5:28pm Michael, hang on. You know we are all with you on this and praying it works. Luv Sandy |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by wildhaus on Mar 15th, 2008, 3:20am 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 2008) to get another Injection, and hopefully using ultrasound to increase accuracy, and achieve grater results.. Quote:
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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by wildhaus on Mar 15th, 2008, 3:38am on 03/12/08 at 22:36:13, Garys_Girl wrote:
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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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by wildhaus on Mar 21st, 2008, 12:02pm 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_6 Post by Garys_Girl on Mar 24th, 2008, 12:57pm 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_9 Post by wildhaus on Mar 28th, 2008, 3:43pm 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_9 Post by Annette on Mar 28th, 2008, 3:49pm 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_9 Post by wildhaus on Mar 28th, 2008, 4:30pm 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_9 Post by Batch on Mar 29th, 2008, 9:12am 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_9 Post by wildhaus on Mar 29th, 2008, 1:54pm 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 http://ecx.images-amazon.com/images/I/41JA970TNNL._AA240_.jpg 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_9 Post by wildhaus on Mar 30th, 2008, 7:05am 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by Annette on Mar 30th, 2008, 2:31pm Excellent news Michael ! :) 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 :-* |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by wildhaus on Mar 31st, 2008, 6:49am on 03/30/08 at 14:31:54, Annette wrote:
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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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by wildhaus on Apr 2nd, 2008, 1:11pm 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by wildhaus on Apr 4th, 2008, 6:54am 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by Annette on Apr 4th, 2008, 5:21pm on 04/02/08 at 13:11:41, wildhaus wrote:
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 :) |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by wildhaus on Apr 6th, 2008, 11:44am 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by Annette on Apr 6th, 2008, 5:35pm Awwww ... sorry to hear that Michael HUGS and painfree wishes to you. |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by wildhaus on Apr 10th, 2008, 2:04pm 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by wildhaus on Apr 15th, 2008, 1:11pm 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by wildhaus on Apr 23rd, 2008, 1:19pm Quote:
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 230408_1735 |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by DennisM1045 on Apr 23rd, 2008, 1:26pm I'm sorry Michael. [smiley=hug.gif] We're with you brother... You are never alone... -Dennis- |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by Tom K on Apr 23rd, 2008, 9:50pm 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by Garys_Girl on Apr 28th, 2008, 9:05pm 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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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by wildhaus on Apr 29th, 2008, 1:46pm 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 290408_1828 |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by Garys_Girl on Apr 29th, 2008, 2:25pm You sound MUCH better in this last post. I'm so glad. Got all my fingers and toes crossed! Laurie |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by wildhaus on May 2nd, 2008, 11:41am Hi I had (today) my Injection, this time it is supported by Lithium (900mg a day) and with a wishful idea, this time I will get 2 weeks of PF time… will see…. The Injection was done using ultra sound (a high resolution and high frequency) with inhancement using Doppler and therefore color display. Using this method – seeing the nerve - enables the anesthesiologist to “put” the Betametason with a total precision – which (hopefully) adds to the efficiency of the treatment. Michael 020508_1884 |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_10 Post by Garys_Girl on May 2nd, 2008, 5:35pm Very cool on the precision-locating of the injection site. Wishing you at least 2 weeks of pain free time!!!!! Laurie |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_11 Post by wildhaus on May 17th, 2008, 12:37pm And once more I have had “my Injection” done, and so far so good. after about 10 days of up to 7 attacks mostly evening/night time (9 pm 11pm 1am 3am 5am) and the 6 / 7 Attack is probably (most likely) rebounds due to wrong use, to short use of O2. it did get to me “big time” the leck of sleep and working 150% did make me a walking zombie and an unfriendly person, and that is an under estimation…… The Injection seem to get a hold “of me” and block the pain, and I get the needed sleep, and back the joy of life! I will have to go and see the Endocrinologist, to determine whether the injection has a long run advers effect on the production of cortisone in the body, and the risks in case of medical emergency and surgery, as well as the effects of the combination of Verapamill, Lithium, Triptans (Zomig), and Novalgin, as we all wonderd on Friday at the hospital, with this combination what are the risks, long term effects, as well as the effectiveness as a fact, and comparative ; effectiveness to adverse effects on the body. One observation we have looked at, is the effect of O2 as an abortive seems to diminish with the use of Lithium, it is for the moment an observation, and I have to little data to support this assumption, I will go on and monitor it closely and after 30 days I will be able to give a better picture, supported with facts and numbers. that much for the moment…… Michael 170508_2025 |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_11 Post by LeLimey on May 17th, 2008, 3:46pm on 05/17/08 at 12:37:04, wildhaus wrote:
Hi Michael, How come with such a vast array of drugs do you come to the conclusion that lithium is responsible for the diminished effectiveness of Oxygen? I think that's a somewhat irresponsible statement to make given that you are probably going to terrify a lot of people out of trying Lithium. I for one have tried Lithium. I went to quite a high dose and whilst it didn't help me, it didn't hinder me either. It certainly didn't make things worse and Oxygen didn't lose it's efficacy for me too. There are literally hundreds' of users of Lithium here, many, many of whom use O2 as well with good results. So here we have two peoples different "experiences" of Lithium and O2. Is one right and one wrong? Who are we to decide.. but a study of one is anecdotal not evidential. |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_11 Post by wildhaus on May 17th, 2008, 4:14pm Hi Helen It is a one case study and we do keep a very strict study lines and differential diagnosis. but it is also a try to go and start a larger study (10-15) in the next year, hard to find CCH’ers that would do so much and ready to loos so many work days, with very, little compensation, if at all….. That is I have stopped every type of meds (but Verapamill at 80mg a day) for about 4 weeks, went trugh hell, and the started the follow up of the cross effects, the adding of Lithium was done after 4 weeks, and after 2 weeks with level of 725mg it seemed to diminish the effect of O2, that is the aborting time is about 25% longer, or at times seem to have no effect, I have said it is an observation and that the data is on the low end! The team that treats me at the hospital is looking for references and possible reasons for this observation, and as I said we will follow it closely, to try and find out. Helen with all due respect I fail to see what is wrong with my observation….. I do believe I do know what I say, and in the correctness of the (pulmonary) data, and the wish that some- one will comment constrictively, that is, giving me the expiriens they have gone trough positive or negative, or similar observation to my observation! |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_11 Post by wildhaus on May 20th, 2008, 1:44pm This is the up-date to the Excel table I have posted (Tks. DJ for your wonderful help) http://www.clusterheadaches.com/michael/injections.xls Michael 200508_2091 |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_11 Post by wildhaus on May 24th, 2008, 11:51am Injection was on May-16-2008 today May-24-2008 to (about) 85% PF that is about 1 attack every second day, only night (11PM) attack… at lower level (up to 6K) no shedows! wonder if it will hold (just) abit longer….. Michael 240508_2151 |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_11 Post by Annette on May 24th, 2008, 12:30pm Thanks Michael for the update ! Would you be able to let us know if there has been any signficant side effects from the injections, since you have had them for nearly 6 months now. Are all the blood test results normal? Heres hope it will work for longer and longer. :-* |
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Title: Re: Suboccipital injection - W/UPDATE No. 1_11 Post by wildhaus on May 25th, 2008, 10:20am Annette, on 05/17/08 at 12:37:04, wildhaus wrote:
I was just procrastinating, don’t feel like going to the hospital, I might do it this week on Friday or a week later….. I try to do every thing they ask me, but at times it gets simply to much. Michael |
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