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Title: Cluster relief Post by valde on Nov 28th, 2006, 9:26am Folks- after 20 years of a life like those listed here, I finally found a solution that works from MEDLINE.....spray 5 squirts of 4% lidocaine, 1 minute apart, in one or both nostrils at the FIRST tickle of h/a....repeat in 10 minutes and so on 'till pain is reduced....lidocaine washes out of your system a couple of hours, so don't worry about repeating thru the day to keep the pain down....my doc and druggist and I put this together from WEB info.....too simple?....maybe, but I've had clusters since '77, been there, taken ALL that and this is the first "treatment" that has given me my life back....pass it on, please? .....just returned from my ENT....he finally realized that my using lidocaine, Anbesol, benzocaine etc. intranasally indicated a trigger point in the nose possibly responsible for "clusters".... he "probed" it and got an "explosive" response from me....yeowww....he send me for head CT scan and in an hour dicscovered I've had a "deviated thick nasal septum" since birth.....(??why didn't the other ENTs, docs, etc spot this 20 years ago?)....the deviation bent the septum to the right, contacting the outer nasal wall....that contact spot is my "trigger point", which responds to irritation, inflammation, pressure, congestion, etc and also responds to topical mucuous anesthetics (4% lidocaine, benzocaine, etc - Anbesol works great in aborting the "flash pain" of a cluster) when carefully sprayed or daubbed at the VERY FIRST sensation of pain in that area, signalling the onset of a cluster...in a few minutes the trigger spot is dead and I'm no longer thrashing around in agony....great relief!!!!.....my ENT has me scheduled for outpatient surgery (nasal septal reconstruction) Monday morning...at the least it will help clear my congestion, breathing and snoring...at the best it will "break" the contact point of it's pressure and stop my clusters...give a week or so to recover and I'll let you folks know how it all comes out...keep your fingers crossed!....if it works some of us may have another choice!!!!..later, .....update!!!nasal surgery worked....clusters are not migraines....check out "Sluder's syndrome", "rhino-genic/facial pain", "intranasal lidocaine", "septoplasty for correction of nasal septum", and the like by searching Medscape, Medline, PubMed, etc!!!...my Aug 18 surgery stopped my pain dead....email me valde@icehouse.net for more....JBD in Boise.... |
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Title: Re: Cluster relief Post by Charlotte on Nov 28th, 2006, 9:39am Welcome aboard, Valde. I'm glad this worked for you. I hope you have continued relief. I don't understand the time line in your post as this is your first post. Are you quoting from something else? Are you advocating lidocaine, or deviated septum surgery? You will probably get an adverse reaction here, even though you are very enthused. We know that ch is not migraine. Many of us have been mis-diagnosed with that and itis a real trigger word. If you are sincere, read the information available on the left side menu. If you are episodic, this may come back in a year or two and you will still need to be prepared. Charlotte |
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Title: Re: Cluster relief Post by Richr8 on Nov 28th, 2006, 9:58am on 11/28/06 at 09:26:38, valde wrote:
CH? Hmm. ::) |
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Title: Re: Cluster relief Post by CynthiaB on Nov 28th, 2006, 10:38am The deviated septum thing sounds a bit off the mark (I'm trying to be nice ;)). But intranasal lidocaine as an abortive is nothing new. It does work for some people, including me. It isn't something that you can do all day everyday, though. It's something that needs to be done under the care of an md. Some docs will use cocaine nose drops, but they can be addictive. I'm sure this is not new info to y'all. I hope nobody's rushing out to get a nose job. |
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Title: Re: Cluster relief Post by Guiseppi on Nov 28th, 2006, 10:40am I tried the 4% lidocaine in the early 80's. It would reduce the pain from an 8 or a 9 on down to a 6 or 7. Sometimes it would have no effect at all. The down side was I would always vomit from the lidocaine that went past the sinuses into my stomach. Several people have posted about lidocaine with varying degrees of success, none as succesful as yours. I'm glad you found something that works for you. I had trouble following some of your link today, I'm assuming you kept re editing it. Not to poop on your parade, ;;D I really hope you've found something that keeps the cycle at bay. But like Charlotte said, be ready. It seems everytime I think I'm done with these things they blind side me again. Do stay active on the board and let us know what happens for you long term. Guiseppi |
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Title: Re: Cluster relief Post by roy21302 on Nov 28th, 2006, 11:38am Glad you found something that works for you, however i have not come across many people for whom Lidocaine worked, it certainly did nothing for me, nor did having nasal surgery. That just gave me two black eyes and a nose that kept bleeding on and off for a week,Oh and a lot of pain. Still as has already been said, glad it worked for you, pity something so simple don't work for everyone!!! cheers Roy |
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Title: Re: Cluster relief Post by valde on Nov 28th, 2006, 1:48pm Folks.....I have cut/pasted some of your comments and am responding to them here-------please refer back to my original post and GOOGLE the terms - John 208-336-3637 Are you quoting from something else? Are you advocating lidocaine, or deviated septum surgery? .....the intranasal topical anesthetic (of ANY kind) is to be used ONLY for diagnosis - IF it stops the pain, you therefore do NOT have migraines - you have (see my last parargraph) simple pain - any ENT will THEN go looking for the source of pain and, IF s/he is GOOD and open, will correct it with outpatient microsurgery and NO black eyes.. We know that ch is not migraine. Many of us have been mis-diagnosed with that and itis a real trigger word. ..I NEVER use "cluster" and "headache" together in ANY way.....they are NOT connected....... If you are sincere, read the information available on the left side menu. If you are episodic, this may come back in a year or two and you will still need to be prepared. ......my entry was written in 1996....I have had NO return of ANY pain.......sincere - yes!!! The deviated septum thing sounds a bit off the mark (I'm trying to be nice Wink). But intranasal lidocaine as an abortive is nothing new. It does work for some people, including me. It isn't something that you can do all day everyday, though. .........it's NOT suposed to be an abortive - reread - I used it merely to diagnose.....AND convince my ENT and other doctors........they are now believers......... It's something that needs to be done under the care of an md. .......I did it at home for a week and then had my nose fixed......... Some docs will use cocaine nose drops, but they can be addictive. .........if cocaine (or ANY "xxxcaine") works - THEN you have your logical answer........you DON'T have headaches - you have a misfiring contact point in your nose......... Sometimes it would have no effect at all. The down side was I would always vomit from the lidocaine that went past the sinuses into my stomach. Several people have posted about lidocaine with varying degrees of success, none as succesful as yours. ........that's 'cuz I used a LOT each time to FLOOD my snasal passage (right side ONLY) while on myback with my head hanging over the side of the bed.....all the fluid would fill the cavity and deaden the nerve ending.....the pain would disappear and I was good 'till the next attack (3 to 48 hrs later)......a week of this convinced the docs I did NOT have headaches.......I had Sluder's Syndrome and it was simply remedied........ Glad you found something that works for you, however i have not come across many people for ....then try "Hurricaine", an OTC topical for mucus membranes.....the pressurized spray is a bit hard to take BUT it is not as back as the cluster.....and it works (best upside down).......if it convinced my doctors, it will convince yours...... nor did having nasal surgery. That just gave me two black eyes and a nose that kept bleeding on and off for a week,Oh and a lot of pain. .......I had microsurgery - woke up, walked out, minor discomfort, NO swelling, No bruising AND NO PAIN since.......that was 10 years ago....your doc and my doc need to talk......... Still as has already been said, glad it worked for you, pity something so simple don't work for everyone!!! ..........it CAN - IF you reread all of this INCLUDING my original post very carefully, follow the logic, discuss it with a GOOD ENT, get an MRI or CT......need more?????.....call me and I'll cal you right back.....John 208-336-3637 |
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Title: Re: Cluster relief Post by vietvet2tours on Nov 28th, 2006, 1:52pm http://i10.photobucket.com/albums/a150/vietvet2tours/Head_winks.gif?t=1164739926 |
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Title: Re: Cluster relief Post by CynthiaB on Nov 28th, 2006, 3:16pm That's so much less confusing than it was before. Thanks. I think that Guiseppi and I are referring to the same lidocaine procedure, because to get enough lidocaine to the nerve that is acting crazy in a cluster....some of it does end up both in the sinuses and in the stomach. I have been a bit nauseated before. It's not about some trigger point in the damn nose, because you have lay on your cluster side for so many minutes and let get down into your head pretty deep. My nose isn't big enough for it to take 10 minutes to reach a trigger point. I've put in way more than my two cents, so I'm done. |
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Title: Re: Cluster relief Post by goof1031 on Nov 28th, 2006, 3:31pm Sluder's syndrome Also known as: Meckel's ganglion neuralgia Sluder's disease Sluder's headache Sluder's neuralgia Associated persons: Greenfield Sluder Description: Atypical facial neuralgia in damages of the sphenopalatine ganglion probably due to vasodilatation of the internal maxillary artery. It is a headache syndrome characterised by neuralgia which is often preceded by infection of nasal sinuses. Occurs most commonly in females after the age of 30 years. The pain is usually unilateral, involving the maxilla, teeth, ear, mastoid, auricular area, the base of the nose, and the area beneath the zygoma, usually in association with itching in the palate, peculiar sense of taste, sneezing, and nasal congestion. Attack lasts minutes, hours, or days. Writers disagree whether this is an autonomous entity. Clusterheads......... I'm not thinking its the same thing.....How about you??? |
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Title: Re: Cluster relief Post by JeffB on Nov 28th, 2006, 4:30pm Are you being serious?? Are you selling something?? I think you are putting something up your nose for sure! |
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Title: Re: Cluster relief Post by BB on Nov 28th, 2006, 5:10pm From the Journal of Laryngology and Otology: 1: J Laryngol Otol. 2003 Jun;117(6):437-43. Links What is Sluder's neuralgia? Ahamed SH, Jones NS. Department of Otorhinolaryngology, University Hospital, Nottingham, UK. In 1908 Sluder described a symptom complex consisting of neuralgic, motor, sensory and gustatory manifestations that he attributed to the sphenopalatine ganglion. He stated that treatment directed at the ganglion successfully alleviated these symptoms. Over the last 90 years several reports have described patients as having sphenopalatine neuralgia and have directed treatment at the ganglion. The symptoms described and the criteria for patient selection in these studies has often been varied and deviated from Sluder's description. In reports claiming cures with treatment directed at the ganglion the duration of post-treatment follow-up has been short. This article discusses Sluder's description and attempts to analyse its features in the light of current understanding of the different mechanisms and categories of facial pain. It is proposed that the condition described by Sluder is a neurovascular headache that most closely resembles cluster headache in its aetiology and clinical manifestations. We propose that the term Sluder's neuralgia should be discarded as there are serious flaws in its original description and many authors have misused the term leading to persistent confusion about it. PMID: 12818050 [PubMed - indexed for MEDLINE] There seems to be disagreement whether this is a facial pain syndrome or a headache, also there seems to be lack of long term follow up of people who were supposed to be cured of the condition following nasal sugery. Annette |
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Title: Re: Cluster relief Post by BB on Nov 28th, 2006, 5:20pm From Mayo Clinic 1: Am J Rhinol. 1998 Mar-Apr;12(2):113-8. Links Sluder's sphenopalatine ganglion neuralgia--treatment with 88% phenol.Puig CM, Driscoll CL, Kern EB. Department of Otorhinolaryngology, Mayo Clinic, Rochester, Minnesota 55905, USA. Patients who experience chronic recurring head and face pain present a diagnostic and therapeutic challenge. Treatment options for Sluder's neuralgia, an uncommon cause for recurring head and face pain, are controversial. We reviewed the outcomes of patients who underwent intranasal phenolization of the sphenopalatine ganglion for the treatment of Sluder's neuralgia. Eight patients were treated with intranasal cauterization of the sphenopalatine ganglion between 1990 and 1995. Patients were treated an average of 13 times. Overall, patients experienced a 90% decrease in head and face pain for an average of 9.5 months duration. Interestingly, the patients described recurrent pain as less severe, less frequent, and of shorter duration. Intranasal phenolization of the sphenopalatine ganglion appears to be a safe and effective, although temporary, treatment for patients with Sluder's neuralgia. This article will review the symptomatology, differential diagnosis, and phenolization technique for treatment of Sluder's neuralgia. PMID: 9578929 [PubMed - indexed for MEDLINE] Annette |
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Title: Re: Cluster relief Post by BB on Nov 28th, 2006, 5:31pm From Winnipeg Health Services Sphenopalatine Neuralgia Also known as Sluder's neuralgia, this facial pain disorder is characterized by unilateral headache behind the eyes with pain in the upper jaw or soft palate, with occasional aching in the back of the nose, the teeth, the temple, the occiput, or the neck. The pain is associated with nasal and/or sinus congestion, swelling or redness of nasal mucous membranes, tearing and redness of the face. Sphenopalatine neuralgia must be distinguished from cluster headache, although both are characterized by similar symptoms. Sluder's neuralgia, however, involves pain that is longer in duration, with inflamed nasal mucosa on the involved side. This disorder is more common in women (2:1, women to men) and appears to be caused by an irritation of the sphenopalatine ganglion from intranasal infection, deformity or scarring. Treatment: Medical therapy for sinus decongestion can alleviate symptoms. Ganglion blocks are also effective for pain control, either by intranasal application or direct injection. The underlying cause of Sluder's neuralgia can also be targeted if apparent. Looks like its a different entity to Cluster headaches, although similar Annette |
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Title: Re: Cluster relief Post by Jonny on Nov 28th, 2006, 5:41pm on 11/28/06 at 13:48:15, valde wrote:
Your entry where?...here? |
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Title: Re: Cluster relief Post by chewy on Nov 28th, 2006, 5:46pm Quote:
Abslolutely they are not connected! All my clusters tend to center around my knee caps. How many snakes does it take to make a quart of oil? |
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Title: Re: Cluster relief Post by JeffB on Nov 28th, 2006, 5:52pm Annette, Sorry you went through so much trouble for this guy. He's an idiot imo. I mean really, whats next.....sticking peppers up our noses to stop the pain???? |
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Title: Re: Cluster relief Post by BB on Nov 28th, 2006, 6:07pm Hi Jeff, I never heard of Sluder syndrome before so I did a bit of research on it just to expand my knowledge on the subject and thought I would share some of what I found. Interesting , yes, but helpful to the Chers , unfortunately no. :( Painfree wishes to all. Annette |
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Title: Re: Cluster relief Post by vietvet2tours on Nov 28th, 2006, 6:12pm I've put a new car up my nose and a set of tires and a washer/dryer and a house and damn near a ranch.My head still hurt |
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Title: Re: Cluster relief Post by E-Double on Nov 28th, 2006, 6:52pm Has lidocaine helped some?.........a little However, a plug for your product is uncalled for. Nice sales pitch |
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Title: Re: Cluster relief Post by Linda_Howell on Nov 28th, 2006, 7:20pm Quote:
Valde, I'd give up my entire business to you.... for an answer to this question from Jonny. No really I would. Linda |
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Title: Re: Cluster relief Post by JeffB on Nov 28th, 2006, 7:21pm And........Poof......he's gone! ;) |
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Title: Re: Cluster relief Post by davyp on Nov 28th, 2006, 7:29pm Ide just like to know where and with what did his ENT probe him to get such an explosive reaction as .....yeowww ;;D ;;D Dape ;;D |
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Title: Question Post by cluster on Dec 4th, 2006, 3:34am Dear all, two questions I always wanted to ask about CH, but was afraid to ask... Has anybody had good experience with nose surgery? Could it be, that there is a disease with cluster like symptoms which can be cured by nose surgery? Some background information (PubMed abstracts): Rhinology. 1997 Sep;35(3):98-102. Related Articles, Links Endoscopic sinonasal surgery in the management of primary headaches. Clerico DM, Evan K, Montgomery L, Lanza DC, Grabo D. Department of Otorhinolaryngology/Head and Neck Surgery, University of Pennsylvania Medical Center, Philadelphia, USA. Primary headaches (migraine, cluster, tension-type) are common disorders thought to be unrelated to nasal and sinus abnormalities. We present data on 19 patients with refractory primary headaches in the absence of significant sinus symptoms. The majority of patients responded with decreased pain to office application of nasal anaesthesia. A high prevalence of sinonasal abnormalities was found on coronal CT scans. Seventy-nine per cent responded with either decreased pain severity or headache frequency after endoscopic sinonasal surgery. We discuss possible underlying mechanisms to explain these findings. PMID: 9403937 [PubMed - indexed for MEDLINE] Laryngorhinootologie. 1996 Jul;75(7):392-6. [3-year follow-up after endonasal microscopic paranasal sinus surgery in migraine and cluster headache] [Article in German] Welge-Lussen A, Hauser R, Probst R. HNO-Universitatsklinik, Basel, Schweiz. BACKGROUND: Migraine and cluster headache can both be triggered by sensitive intranasal areas. METHODS: Endoscopic nasal surgery was performed in 20 patients with chronic migraine without aura or cluster headaches that were refractory to other forms of treatment for a mean period of 18 years (range of 1-45 years). The selected patients showed clinical and radiographic evidence of contact between the middle turbinate and the nasal septum. All patients experienced immediate relief of pain following topical application of cocaine to the presumable triggering area. Five patients with cluster headache and 15 patients with migraine were treated. RESULTS: All patients with cluster headache were free of symptoms after surgical intervention and for a mean follow-up period of three years. Six of the 15 patients with migraine were completely free of symptoms after a mean follow-up period of three years; five had improved more than 50% in the duration and frequency of their attacks. Treatment was unsuccessful in four patients. CONCLUSION: This trial established a likely relationship between nasal trigger areas and cluster headache through the trigeminovascular system and a possible relationship to some type of migraine without aura. PMID: 8924166 [PubMed - indexed for MEDLINE] Ital J Neurol Sci. 1995 Nov;16(8 Suppl):49-55. Related Articles, Links Pathogenesis and surgical treatment of neurovascular primary headaches. Novak VJ. Clinica Villa im Park Rothrist, Lucerna, Svizzera. The "neurovascular primary headaches" are syndromes also pertinent to otorhinolaringology when CT demonstrates a reduced volume of the "ethmoidosphenoidal subcribriform chamber" according to the endo-exocranial hemoangiokinetics of this area. It is emphasized that in drug-resistant headaches recovery or consistent definitive improvement can be achieved only after surgical correction of certain anatomical parameters (P. Bonaccorsi, V.J. Novak, S. Hoover). Bonaccorsi and Novak independently identified the actual pathophysiologic mechanism and trigger zone ("dysmorphism") for various types of neurovascular primary headaches. Patients (n = 446) with various types of headaches (migraine, cluster headache and so-called idiopathic or primary headaches) were operated upon between 1973 and 1994. Septal correction, resection of the middle and superior concha, ethmoidectomy, and sphenoidectomy on the corresponding headache side or occasionally on both sides were carried out. Most patients (356, 80%) were asymptomatic postoperatively, 45 (10%) had a sensation of pressure in the head on rare occasions but no further migraine, and 45 (10%) continued to experience headache that occurred only rarely and was mild and of short duration. The overall success rate was 90%. For cluster headache in 20 patients, we observed the following postoperative results: 19 cured (98%), 1 improved (2%). PMID: 8751189 [PubMed - indexed for MEDLINE] (part 1) |
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Title: Question (continued) Post by cluster on Dec 4th, 2006, 3:51am (part 2) Laryngoscope. 2003 Dec;113(12):2151-6. Endonasal surgery for contact point headaches: a 10-year longitudinal study. Welge-Luessen A, Hauser R, Schmid N, Kappos L, Probst R. Department of Otorhinolaryngology, University of Basel, Kantonsspital, Petersgraben 4, CH-4031 Basel, Switzerland. awelge@uhbs.ch OBJECTIVE: Some migraine and cluster headaches may be triggered by stimulation of intranasal contact points via the trigeminovascular system. Endonasal surgery is successful in some patients, but long-term outcomes have not been reported. STUDY DESIGN: Prospective. METHODS: This investigation included 20 patients with a mean 18-year history of refractory cluster or migraine headaches who were selected for surgery. All had endoscopically visible endonasal contact as well as a positive preoperative cocaine test result. Changes in pain severity and frequency and duration of headache attacks were statistically rated using a MANOVA. Follow-up averaged 112 months. RESULTS: Almost 10 years after surgery, six patients remained completely free of pain, seven had significant symptom improvement, and seven received no benefit from surgery (65% improvement). Two patients had been free of all symptoms for 7 and 8 years, respectively, before complaints returned. CONCLUSION: Our data suggest that some patients with refractory headaches and endonasal contact areas benefit from surgery, thereby supporting the existence of a connection between the two. Even though it is clear that surgery should be considered only if all other treatments have failed, a success rate of 65% over almost 10 years justifies evaluation of this option. Preoperative patient selection remains crucial and warrants further investigation. PMID: 14660919 [PubMed - indexed for MEDLINE] Ital J Neurol Sci. 1995 Nov;16(8 Suppl):69-100. [Decompressive neurovascular nose and skull-base surgery in primary headache with a rhinogenic trigger] [Article in Italian] Bonaccorsi P. Sezione Chirurgica Cefalee, Casa di Cura Piacenza. The therapeutical results such as recoveries or substantial improvements obtained by neurovascular decompressive functional morpho-corrective rhino-skull base surgery on 2124 cases of primary headaches (migraine with aura, migraine without aura, cluster headache, chronic paroxysmal hemicrania, tension-type headache) obliges a thorough review of the classical chapter on "rhinogenous headaches" (Bonaccorsi, Novak, Blondiau, Bisschop, Hoover, Clerico). In fact all those headaches seemingly "primary", but having a "central-peripheral" etiopathogenesis proved by a well documented (CT) volumetric reduction of "ethmoidosphenoidal subcribriform chamber" according to hemoangiokinetics purposes of endo-exocranial anastomotic circulation of this area, should be included in the chapter of "rhinogenous headaches". This endo-exocranial anastomotic circulation is considered a "functional unit" owing to the continuity of rhino-ophthalmic-encephalic trigeminal-vegetative and vascular circuits (Hannerz, Hardebo, Moskowitz). These morphological abnormalities of the rhino-skull base osteo-vascular-mucous structures acquire physio-pathological significance only in patients with "low pain threshold and elevated central integrative capability", modulated and timed by the neurogenic biorhythms. It is described the surgery of rhino-skull base by "neurovascular decompressive septo-ethmoidosphenoidectomy" procedure, either conservative or radical till the III grade monolateral with trigeminal and vegetative selective neurotomy that permits to save olfaction and to remove even the controlateral pain decompressing the circulation and eliminating stasis even on the opposite side. Further, it is emphasized that the neurological deficit or central irritative symptomatology (visual aura, sensory-motor paresis, epilepsy) disappears after surgical removal of the "peripheral rhinogenous trigger". It demonstrates a cause and effect relationship that is the central peripheral functional interdependence, even if it's included in the neuro-transmissive, biochemical, neuro-endocrine, constitutional background which is controlled by the psychical, vegetative and dysnociceptive biorhythms. Publication Types: Review PMID: 8751191 [PubMed - indexed for MEDLINE] See also: http://www.vj-novak.ch/ (English text at bottom of page) http://www.vj-novak.ch/publish_2.html http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=401820 Old CH.com thread (could not find newer threads on this subject): http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2003;action=display;num=1066335835 On german CH MB's I found not much about this, but two positive reports and a comment from Ueli dated November 2000. German language links: http://f15.parsimony.net/forum24836/messages/1280.htm http://f15.parsimony.net/forum24836/messages/11213.htm http://www.forumromanum.de/member/forum/forum.php?action=std_show&entryid=1096792683&USER=user_42304&threadid=2 Looking forward to reading your replies! Painfree times! Friedrich edit for spelling + added german MB links |
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Title: Re: Cluster relief Post by BarbaraD on Dec 4th, 2006, 6:58am on 11/28/06 at 17:52:41, JeffB wrote:
Tried the peppers -- it didn't work, but definitely gave me something to think about when the CH passed! But seriously - my ENT (a new one) says my nose has been broken at one time in my life and something is blocking my sinus. Eventually we're going to operate on it (just now got some insurance with no preexisting riders). He says it "might" help the CH and it may not, but I'll be able to breathe easier. So far the ones I've heard of having sinus surgery didn't work out with the CH, but we're mostly willing to try new things if we think there's a chance it will help. I think we're all just short-ciruited somewhere and some day some doctor will find out where. Until then...... Hugs BD |
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Title: Re: Cluster relief Post by chewy on Dec 4th, 2006, 7:11am Quote:
Well Valde, it appears that is not the only contact point you have that is misfiring. |
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