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My general practitioner doctor has been treating me for cluster headaches, among other things.  I’ve had nerve blocks with little to no lasting success and tried a dozen or so preventative medications. The only western medicine preventative that might work for me is Verapamil. Currently I’m taking 360 mg ER. I was randomly losing partial vision for 30 minutes or so not during a cycle and with no headache. After starting Verapamil that hasn’t happened in over a year. MRI showed no problems. He hinted I’d be better off getting oxygen myself; which I did. The welding oxygen provides some relief but I’ve been struggling with feeling like I’m going to pass out using it while also getting some relief. The best thing I’ve found so far is sumatriptan and D3 regimen at the onset of a cluster cycle.  I know sumatriptan should be avoided. I only use them if the attack is really bad and/or I’m at work and need to work.  I don’t feel like I get rebounds and generally only have to use them once or twice a day for the first 2 weeks of my cluster.  I also split them in half. 
 

My question is, and the problem is, I’ve never been given a diagnosis. I’ve never been to a neurologist/specialist and my town is small and remote without specialists. I haven’t sought out a diagnosis because I feel like I’m being treated for cluster headaches regardless of a diagnosis. In the past I’ve been treated for migraines, occipital neuralgia, and cluster headaches. The cluster headache “treatment” has had the most effect. I’ve been suffering the “headaches” for 15 years, since 22 years old. I’m convinced I am having cluster headaches due to the severity, frequency, duration, and seasonal occurrences. I don’t get a red drooping eye or stuffed up.  Can cluster headaches come with no eye redness/drooping?  I just get a lot of pain, sweating, and, on the worst ones, ear ringing and once sided face tingling/numbness. I feel like I want to run off a cliff on the worst ones. 

Other than an actual O2 prescription, and given my treatments, is there a benefit to a diagnosis? 

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@EggMan welcome

i don’t get autonomical symptoms either with my headaches. I get pain mostly behind my head and ear, also behind my eye. I was wondering if I had occipital neuralgia because an MRI of my neck a year ago showed an inflamed ligament at the base of my neck. I was told I needed physical therapy but I can’t afford that. Have you found occipital neuralgia treatments are helping? 

Kat 

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...one of the problems with undiagnosed yet treated conditions is how insurance companies will or most likely WON'T cover the treatments or procedures you need...you may be fine with current but run into problems with next...it does sound like your PCP is  treating appropriately tho the vison issue sounds more migraine than CH...

.....many folks find that immediate release verapamil is superior to extended release.... put that in your consideration file and note that 360 is a somewhat low dose....480 seems to be the sweet spot and some go much higher as needed....

.....what type of O2 mask and flow do you use...a specialized clustermask and 15-25 lpm can make a huge difference....adjustments in body position may help...I found sitting at a 45 degree forward body lean with head down "looking at feet" to be optimal...YMMV

best

jonathan

Edited by jon019
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It sounds like you would benefit form another opinion regarding your diagnosis.  There is no competent physician who would be offended if you sought out an opinion.  You have had imaging and have had this for a long time so it's unlikely something like a tumor.  Cluster headaches are a diagnosis of exclusion which basically means if the symptoms fit and nothing else is found; you have cluster headaches.

 

Personally I believe if you have the classic symptoms and O2 used properly knocks out an attack: diagnosis is straightforward.

 

The diagnosis and treatment of cluster headaches is pretty unique so a proper diagnosis is appropriate.  There is a whole constellation of severe headache called trigeminal autonomic cephalgia (TAC) many of which have a nuance treatment unique to that type of headache.

 

You are in an awkward spot if the O2 advise from @jon019 doesnt' abort an attack I would pursue another opinion.

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  • 2 weeks later...

Hi Eggman,

A TAC can come with many different autonomic symptoms. It is not always a red eye or tearing eye. It can also be a stuffed or running nose among many others.

And the most important, following the ICHD-3 classification, it says:

C. Either or both of the following:

  1. at least one of the following symptoms or signs, ipsilateral to the headache:
  •  – conjunctival injection and/or lacrimation
  •  – nasal congestion and/or rhinorrhoea
  • – eyelid oedema
  • – forehead and facial sweating
  • – miosis and/or ptosis
  1. a sense of restlessness or agitation

So technically, the most important symptom is a sense of restlessness. And that is also how a probable TAC is defined these days... strictily unilateral sidelocked  headache with a sense of restlessness. That is a red flag for a TAC. If you are restless, other autonomic symptoms are technically not required for the diagnoses.

Apart from the above autonomic symptoms there are also alternative ones:

  • – conjunctival injection and/or lacrimation
  • – nasal congestion and/or rhinorrhoea
  • – eyelid oedema
  • – forehead and facial sweating
  • – forehead and facial flushing
  • – sensation of fullness in the ear
  • – miosis and/or ptosis

I have myself very little eye tearing, quite some nasal congestion but the fullness in the ear is a big one for me ! I don't have CH but CPH but that doesn't matter... the autonomic symptoms are the same

All the best !

siegfried

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Thank you for the feedback and responses. 

I have been having a rough go of 2-4 a day (mostly at night) for the past two weeks. Hopefully that means I’ll be tapering off soon. I actually have a doctor’s appointment in a few days and plan to pursue a diagnosis or referral to a specialist. Hoping diagnosis will simplify prescriptions and explanations.

Any chance anyone has heard of or tried Methysergide?  It is supposed to be effective for narrowing blood vessels preventatively, similar to what oxygen and sumatriptan do reactively at the onset.  Something I’m going to ask about at the appointment. Thanks again for the information. 

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9 hours ago, EggMan said:

Any chance anyone has heard of or tried Methysergide?  

...boy that's an old one I haven't thought about for a long time...tried in the 80's to no effect.....relative of lsd so in theory effective...."supposed" to only be used in intractable cases (as a prevent) where other meds fail, as it has potential very bad side effects (note, with EXTENDED use).....requiring a periodic drug holiday..

....having not seen any significant reported success with this over the years, I am initially inclined to be dismissive.....but it all depends on where you are on the spectrum that only you know....as Chfather recently pointed out....we are far more likely to see failure stories than success....still, it's a long shot....

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1 hour ago, bwunk said:

new here.  why is sumtriptan bad?  i use the 100mg dose alot during my cycles.  what is a rebound?  

Rebounds (Or Medication overuse headaches) are a cycle of increased frequency of headaches, or intensity of headaches, because of medication use or overuse.

I can’t say definitely that I’ve experienced  rebounds, but have found myself in seemingly repetitive use cycles where I wondered if my sumatriptan use was increasing the number of daily attacks. 

I haven’t found much proof of sumatriptan causing rebounds but have read many cautionary tales from other patients. Oxygen seems to be the accepted alternative and works just as well for me. It is however much less portable. 

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Thanks.  Sometimes I KNOW I am taking too much triptan to get through a family event or something. My stomach pays the price.  Plus my insurance won’t cover more than 9 pills a week.  So if I run out I am in trouble.  
 

I need to ask my dr about oxygen. And I would like to try mm

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On 6/28/2020 at 8:33 AM, kat_92 said:

@EggMan welcome

i don’t get autonomical symptoms either with my headaches. I get pain mostly behind my head and ear, also behind my eye. I was wondering if I had occipital neuralgia because an MRI of my neck a year ago showed an inflamed ligament at the base of my neck. I was told I needed physical therapy but I can’t afford that. Have you found occipital neuralgia treatments are helping? 

Kat 

No, the only treatments that have helped are for cluster headaches. The few nerve blocks I got did give me relief for a couple days though.  Avoiding alcohol, sumatriptan, just now “mastering” oxygen, but haven’t really found a preventative that has reduced frequency during my time of the year. 

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Posted (edited)
1 hour ago, kat_92 said:

@EggMan is busting an option for you? Seems to be the only preventative worth trying other than the d3 regimen. High doses of verapamil seem unsettling long term. 

Kat 

I’ve been taking the D3 regimen for the past 3 weeks or so.  I have not had blood work done to check any of my levels though so maybe I’m not giving it a fair shot.  I haven’t noticed a significant change for better or worse except some indigestion after all the pills.

I’m pretty naive and ignorant to busting methods.  Do you have instructions or a link?  Are any methods “over-the-counter?” I live in a remote area without a lot of access to recreational or “specialty” items. 

Edited by EggMan
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35 minutes ago, EggMan said:

I’m pretty naive and ignorant to busting methods.  Do you have instructions or a link?  Are any methods “over-the-counter?”

For basics, click on the blue "New Users..." banner at the top of any page.  Rivea corymbosa seeds (in most places) are "over the counter" in the sense that they are legal to purchase and possess, yet are very effective busting agents.  To discuss any of this further, you'd want to start a thread at one of the more private boards ("Share Your Busting Stories" would work, or "Theory and Implementation").

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3 hours ago, bwunk said:

my insurance won’t cover more than 9 pills a week.  So if I run out I am in trouble.  
 

I need to ask my dr about oxygen. And I would like to try mm

The pills barely work in any event.  If you ask your doctor about oxygen, s/he is likely not to give it to you. Lord knows why, but that's how it usually works. You need to insist on oxygen, and/or find a doctor that is competent enough to prescribe it.  For a bunch of stuff that might be helpful, take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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8 hours ago, CHfather said:

The pills barely work in any event.  If you ask your doctor about oxygen, s/he is likely not to give it to you. Lord knows why, but that's how it usually works. You need to insist on oxygen, and/or find a doctor that is competent enough to prescribe it.  For a bunch of stuff that might be helpful, take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

thank you will give it a read!

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Disappointed in myself that I’ve waited this long to pursue a referral and see a neurologist. Within 15-20 minutes of talking with him today, he diagnosed me with cluster headaches after hearing symptoms, seeing a clean MRI, and hearing self administered oxygen works as well as sumatriptan does.

Not that the diagnosis changes anything, but I guess I wanted validation that I hadn’t “just” been having “headaches”... They are as bad as I’ve perceived them to be. 

He prescribed Emgality, which I guess is a series of 3 injections you would normally take at the onset of a cycle. I am a month into cycle so I might be too late this time.  Hoping others have had luck with this FDA approved Cluster Headache treatment?

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@EggMan I myself haven’t had much luck with many treatments I’ve tried, except for oxygen. That works great for aborts. But preventatives are where you want to go because you need to get them under control. I was given emgality as well. But I never took it. I feel like for me, it will cause more harm that good with clusters. I’ve heard people with migraines respond very well to Emgality. But clusters and migraines are so different. If you are open to trying different treatments, I would go for it. I am apprehensive. 

Kat

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8 hours ago, kat_92 said:

I feel like for me, it will cause more harm that good with clusters. 

Neurologist prescribed emgality specifically for episodic cluster headaches. He said it’s one of the few (if not only?) FDA approved preventatives for cluster headaches. 3 consecutive 100 mg injections I believe. I don’t have it yet but am supposed to get it tomorrow.  What have you read, heard, or experienced that makes you apprehensive to try it?  Any advice or information on it would be much appreciated. Thanks. 

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EggMan

I have tried Emgality. The first time it took my cluster from 90 a month down to about 45, I am thinking that was just coincidence. the following 2 months it had no change on the amount of attacks I had although they did not co back up all that much either. The 4th time I took the shots all hell broke lose again and I gave them up. I am not saying it will not help you, we are all a little different. 

One thing I will say is make sure the shots are at room temp, they hurt like hell if they are cold, You keep them in the refrigerator for storage so pull them out a few hours before use. 

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@EggMan I think there is a thread someone started on here about emgality. Quite a few people have posted and I just dont think the results are promising. I don’t know. I think it also depends on whether you are episodic or chronic. Maybe episodic sufferers have better results? Also I’ve been to 6 neuros now and I think they are all super ignorant to the severity of clusters so I don’t trust a lot of what they have to say. Not saying all doctors are like this. But the ones I’ve encountered...yep. Also my doctor is SUPER medication forward. Every time I go he asks 

any luck with neproxen? 

Any luck with relpax? 

Fioricet? Etc. it’s SO ANNOYING 

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I just did my loading dose of emgality a week ago, two auto injectors into the thighs. Having done self dhe injections and sumatriptan injections, I will tell you the injector hurts. So far no change whatsoever but wasn't holding out too much hope, as from my understanding it is amazing for migraine, useful for episodic and nearly useless for chronic, but was worth a try. So far no side effects, maybe a bit more irritable but that is it. I have been lucky as my city has "CHAMP" as a dedicated clinic. Calgary headache assessment and management program. Neuros all specializing in headache disorders. Also my primary care physician keeps in touch with them and is pretty knowledgeable, as a 'plus' I ended up having a "10" hit at an appointment with her, so she saw firsthand what that looks like. It honestly shocked and scared her, so was a good thing.

Knowing what you are dealing with is a good thing, having it be clusters gives you a sad welcome to a somewhat exclusive family who would probably prefer they get no new members :)

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I am skeptical of anything, but trying to stay optimistic. He’s the only neurologist I’ve seen though. The laundry list of pain killers and migraine medications I’ve tried he said were worthless on cluster headaches. He seemed a bit dismissive on vitamin supplements but almost high fived me when I told him about my welding oxygen and told me to keep using it. He said many of his patients can’t afford the medical O2 they’re prescribed. This gave me more confidence in my “under the table” setup in terms of safety and efficacy. Since I’m episodic and average 2-4 per day, I think the Emgality is worth a shot. 

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@EggMan yay I love supportive doctors! That’s awesome :) yes it is quite expensive. And it’s annoying to rely on the medical supply company. Go for the emgality then! Keep us posted :) 

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Here is a link to the Emgality savings card you may be able to use to get it at no cost. I was able to use this along with my insurance and had 0 co pay.  I hope it all works out for you, I am Chronic and did not have good luck with it but we are all different and if it has no real side effect why not give it a try. 

 

https://www.emgality.com/savings?utm_source=google&utm_medium=ppc&campaign=10500422360&adgroup=106595784409&ad=382852915174&utm_keyword=kwd-531753709621&utm_id=go_cmp-10500422360_adg-106595784409_ad-382852915174_kwd-531753709621_dev-c_ext-_prd-&gclid=EAIaIQobChMI2KyKq5LU6gIVg43ICh2FcQ8mEAAYASAAEgKFf_D_BwE

 

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