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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Everyone Should Read This:
        
(Message started by: sistersue on Oct 22^nd, 2007, 4:15am)

Title: Everyone Should Read This:
Post by sistersue on Oct 22^nd, 2007, 4:15am

After about a year of sinus pain which turned into 5 months of hell with daily cluster headaches, 3 neurologists that all diagnosed CH, 2 MRIs, 2 CT scans, trips to the ER for pain, Zomig for weeks and then 16 doses a day of Lidocaine for weeks, George was literally dying from the drugs and asked his PCP to send him to an ENT doctor because the beast seemed to start in his left sinus. All the doctors he saw didn't think to send him to an ENT specialist. He was lucky to get an excellent one who took one look in his nose and said "You need surgery." To make a long hideous story short, he had the surgery and the cluster headaches stopped. He had bone spurs behind his nose that were pushing on his trigeminal nerve. No one saw anything wrong in the MRIs or CT scans he had. He is still recovering from the surgery but the headaches are gone. He has minor head pain but that's from the surgery. I think anyone with CH should see a GOOD ear, nose and throat doctor just in case there's something in the nose or sinuses that shouldn't be there.

Title: Re: Everyone Should Read This:
Post by Wayne on Oct 22^nd, 2007, 5:04am

Good luck to George, I hope that's the end of it for him.

Title: Re: Everyone Should Read This:
Post by Annette on Oct 22^nd, 2007, 5:43am

Hello SisterSue

Thank you very much for sharing your experience.

I am just curious though, did your husband have autonomic features such as sweaty brow, droopy eyelid, blood shot eye, watery eye and most importantly dilating pupil on the side of the headache? Did he also have symptoms of vasodilatation such as getting very hot and flushed during a hit? sweating profusely and increased blood pressure? Did he have the pain all the time or did it stop after 30 to 90 mins only to return the next time? Did he have hits at the same time each day? Did he wake up with a hit? Did he get hit about 90 mins after falling asleep?

True CH is caused by a malfunctioned hypothalamus which leads to clockwork attacks and autonomic symptoms as well as neurovascular symptoms. Facial pain caused by a bone spur impinging on the trigeminal nerves will not be accompanied by autonomic nor vascular symptoms. It would be just plain neurogenic pain. He would have symptoms of trigeminal neuralgia rather than CH. The pain would be more continuous with exacerbating shock like acute pain in between not lasting more than a couple of seconds each.

What I dont understand is how can an ENT surgeon, no matter how good he is, can see that your husband had a bone spur pushing on the trigeminal nerve just by looking inside his nose? As you said yourself, the bone spur is BEHIND the nose, so how can anyone see it by looking through the nostril while all the other specialists had missed it on MRIs and CT scans?

My guess is either your husband was misdiagnosed as having CH while indeed what he had was trigeminal neuralgia caused by this bone spur. Or if he indeed had CH then the surgery wouldnt have cured it at all. The headaches may have stopped because his cycle was finally over. The surgery may have caused some physical "shock" to his system and this sometimes can affect the cycle. However, if he really does have CH, it will return eventually.

Therefore I sincerely hope that your husband did not have CH at all and he was simply misdiagnosed. However, if this was true then I have grave concerns about the competency of the specialists he had seen. If he didnt have autonomic and neurovascular symptoms and they diagnosed him with CH then that would be tragic.

All the best and I wish him a speedy recovery and no more headache from now on.

Title: Re: Everyone Should Read This:
Post by TomM on Oct 22^nd, 2007, 11:49am

on 10/22/07 at 04:15:19, sistersue wrote:

After about a year of sinus pain...

Sorry if I am a doubting Thomas but....this says it all. I think he was misdiagnosed. IMHO.
TomM

Title: Re: Everyone Should Read This:
Post by MJ on Oct 22^nd, 2007, 12:41pm

I agree with sistersue in that everyone should be aware of the possibilities of intranasal contact point headache.

The headache can apparently mimic clusters in many ways.

With the frequent misdiagnosis of many people that come to this site alone, its a very real option albeit in a small percentage of sufferers.

I remember sistersues initial posting and though he was diagnosed with clusters the potential for Intranasal contact issues was there.

There is much literature to both support and some to deny this affliction.

Thanks for the update sistersue.

http://www.laryngoscope.com/pt/re/laryngoscope/abstract.00005537-200312000-00019.htm;jsessionid=HcPfrTjyJhKN86n1VfFDmLN0vpBQXlQ9jhCtCJZ9TPSSyLsL2qHM!1899110359!181195628!8091!-1

Title: Re: Everyone Should Read This:
Post by Annette on Oct 22^nd, 2007, 9:28pm

This is the diagnostic criteria for contact point headache as set out by the IHS.

Diagnostic criteria:

1- Intermittent pain localised to the periorbital and medial canthal or temporozygomatic regions and fulfilling criteria C and D

2- Clinical, nasal endoscopic and/or CT imaging evidence of mucosal contact points without acute rhinosinusitis

3- Evidence that the pain can be attributed to mucosal contact based on at least one of the following:

- pain corresponds to gravitational variations in mucosal congestion as the patient moves between upright and recumbent postures

- abolition of pain within 5 minutes after diagnostic topical application of local anaesthesia to the middle turbinate using placebo- or other controls.

4- Pain resolves within 7 days, and does not recur, after surgical removal of mucosal contact points

Note:
Abolition of pain means complete relief of pain, indicated by a score of zero on a visual analogue scale (VAS).

Comment:
Der A11.5.1 Mucosal contact point headache is a new entry to the classification for which evidence is limited. Controlled trials are recommended to validate it, using the listed criteria for patient selection.

This was taken from

http://ihs-classification.org/en/02_klassifikation/05_anhang/11.05.01_anhang.html

This is totally different from the diagnostic criteria for clusterheadaches.

This is also a new diagnostic criteria which has not been confirmed with clinical trials as to its validation.

It highlights the importance of seeking out doctors/specialists who have substantial knowledge and experience with headaches to avoid the pitfall of misdiagnosis.

Title: Re: Everyone Should Read This:
Post by sistersue on Oct 23^rd, 2007, 1:58am

Annette - Your first paragraph describes the way George was exactly, except for the 90 minutes after falling asleep. The ENT doctor did have the CT scans and the MRIs in his office when he looked in his nose, so maybe he diagnosed bone spurs from all three of these exams. We became hopeful when we read that Lidocaine spray will halt the headache if it's NOT really CH, and it did halt them. The problem is that 16 doses a day can kill you. He had the surgery 2 weeks ago and has not had one of those horrible headaches since. That's why I wrote this because it may help someone. Apparently the 3 neurologists he saw are incompetant. This is really scary. Just think of all the people suffering in the country who could be helped if they just happened to see the right doctor. It seems that George had most of the symptoms of CH and also most of the symptoms of trigeminal neuralgia.

Title: Re: Everyone Should Read This:
Post by Annette on Oct 23^rd, 2007, 2:24am

Hello SisterSue

If George had all the autonomic and vascular symptoms then there is a possibility that the ENT surgery would not be the cure that you were hoping for.

The way things are, unfortunately George has been misdiagnosed by someone. Either the ENT specialist did or the neurologists were wrong.

If George really has clusterheadaches then you should know that ENT surgery is not a cure. If he didnt have CH then where did all the autonomic/vascular symptoms come from? A bone spur pushing on the trigeminal nerve can not cause all the symptoms you said he did.

I guess only time will tell. If the headaches never return then its great and it meant he was misdiagnosed by all 3 neurologists. If the headaches return then the ENT surgery had not helped at all.

I pray for you that he has no more headaches, no matter what type.

Title: Mucosal contact point headache
Post by cluster on Oct 23^rd, 2007, 2:59am

Sistersue, my best wishes for George!

Quote:

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.

Source: PMID 14660919 (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=14660919&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus)

Edit to say: "Sorry, I just noticed that this is the same text as in the link from MJ above."

More information on "Mucosal contact point headache" (German, but if you click the links you will understand what it is about):

http://www.ck-wissen.de/ckwiki/index.php?title=Mukosakontaktpunkt-Kopfschmerz

pf wishes
Friedrich

Title: Re: Everyone Should Read This:
Post by Annette on Oct 23^rd, 2007, 4:52am

SisterSue

There is one more point, if you or George has another chance to see the ENT specialist, ask him to show you where on the MRI and CT scan did he see the bone spurs. Although you are not doctors but you will be able to see it if its pointed out to you.

It is not physically possible to see those bone spurs just by looking into someone nostril. From everything I have read, it can only be seen in an MRI/CT scan or with a nasal endoscopy.

It doesnt make sense to me that the ENT surgeon could see it straight away from the scans and all the other 3 neurologists would miss it.

I am rather concerned that George had been misdiagnosed. I have also seen specialists/surgeons who would push for unnecessary surgery to make money for themselves.

Title: Re: Everyone Should Read This:
Post by Beastfodder on Oct 29^th, 2007, 6:46am

Sistersue,

Hope it's sorted with hubby now. Cautionary tale tho' - after a few annual cycles when I too was (mis)diagnosed as a sinus sufferer surgery was deemed to be the answer.

The doc was delighted to take the linings out of the sinus on the left hand side and even shaved some of the bone/gristle off around the opening to make them easier to drain.

Whilst there was probably something infected in the sinus they operated on, the procedure didn't stop CH returning the next year. When it did they were all too keen to operate again - fortunately I wasn't keen and after a healthy exchange of views, the discussions led to an 'official' CH diagnosis.

Which of course is the best place to start in getting the thing under control and back in the box, hope this bone spur removal draws a line under CH for your hubby, but don't go back to the operating table if it does.

Finger's crossed.

Title: Re: Everyone Should Read This:
Post by doogiebklyn on Oct 29^th, 2007, 2:54pm

That's great! I hope they stay away for good. I saw an ENT and ended up getting a deviated septum taken care of. The CH were gone, for three years. Then they came back. After that I had another major gap of five years with no CH. But now they are back.

I guess I'm getting cynical, but I don't think that it's possible to get rid of them. Everything has been tried. It's crazy when you read of all the different things that people have tried, including myself, and yet it still always comes back. Good luck!

Douglas