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Elrik138

Chronic Cluster a Year OR Longer?

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I will hit 1 year of this month on, October 28th. I had read constantly that Clusters can last up to a year, but recently on another forum, someone said that they were sorry to tell me that they can last yearS! Three months ago I was put on Emgality 300mg, a month and I am getting ready for round two of sphenopalatine ganglion blocks and ketamine infusions. Worth mentioning that I also have Trigeminal Neuralgia on the same side of my head so I don't know Cluster-Tic maybe? I had Gamma Knife for that in December of 2018, the Neurosurgeon had said that it might help the Clusters, it didn't. Also, my Trigeminal Neuralgia is now ATypical, or Type-2, whichever you prefer I don't know if that is pertinent or not thought that I would mention it as they both share the same nerve root. So the question is will this end soon OR can it last years? I received the Cluster diagnosis by two different Neurologists.

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Hi Elrik138,

Sorry to say, but they normally last much longer. Usually, once you get clusters you have them for life.

Now, are you episodic or chronic, that's a different question. I think the official diagnosis is that if you have them for a year with gaps between attacks not lasting more than a month, then you are technically chronic. 

People do go from episodic to chronic and, I believe, chronic to episodic. I've been chronic since mine started in Jan 2007. So coming up on 13 years now. But, the treatments we talk about on this site are so effective that my attacks are really mild. I have 2-3 a month, but barely notice them. 

Mox

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In the new ICHD-3 classification, the remission period must now be >3 month to be episodic, if not its classified as chronic while under ICHD-2 you was already episodic with >1 month remission. So a lot of episodic patients became suddenly chronic... quite weird if you ask me.

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Hey Elrik! Yes, they can last. Unfortunate but true. On the other hand, I had a ten year remission once, so don't despair! Others have experienced the same. Some have experienced them since childhood. Which is horrible! You never actually know. But, they can be managed to a great degree.  

Please read and ask questions. Hopefully we can help. If nothing else, we do understand what you are going through. And this board has many years of experienced Cluster Heads to talk to and get info from to fight the beast. 

ATB

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Hey Elrik,

My neurologist refers to us as "Tic-Tacs"...

I'm familiar with what you've described.

Episodic CH diagnosed in March 2018 and my TN was confirmed earlier this year, experienced both TN1 and TN2... 

Fortunately my TN flare ups are infrequent and my CH is under control with treatments found here on the forum.

Feel free to shoot me a private message, I'll be happy to help where I can.

 

Edited by dmlonghorn

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The definition of episodic or chronic is just that, a definition.  Though it matters to the individual because of the pain, anguish and disability are real and life altering, a definition is used to characterize the condition for medical bookkeeping.  Personally I suspicion that this is a spectrum condition.  What I mean by that is all the TAC's are different presentations of a similar mechanism.  Whatever is causing the inflammation, vasodilation and sympathetic symptoms (drooping eye, watering pupil changes) probably has a similar genesis with a subtly different manifestation.   What speaks against this is the variations in treatment response.  This includes different responses to O2, triptans, psychedelics, analgesic and surgery.  One would think that if there was a common pathway we would see similar responses to treatment across diagnosis'.  Instead reports seem to indicate though there is some cross over in treatment response (triptans seem to work for chronic, episodic, and other TAC's they do not offer much relief in trigeminal neuralgia) and there is little cross over with other interventions. (O2 and psychedelics as a treatment option seem relatively confined to treating classic cluster headaches.  So we may speculate for a cogent answer, the reality is we know so little about this scourge and this leads to lots of speculation and exploitation.  The pain these conditions inflict is so intense  you are willing to subject yourself to just about anything damn the risk.

Having said that, I always wonder why many resist trying alternative therapies like the classic psychedelics.  Here is an intervention that seems effective in folks with cluster headaches and supported by an abundance of evidence regarding the safe use of these modalities.  Collectively we have been misinformed by our regulators/government/medical providers that these substances are dangerous and have no medical applications.  If the evidence of safety and efficacy regarding psychedelics were not so robust we would not be living in a time of psychedelic Renaissance

 

@elrik138 your situation is especially challenging.  When you have multicentric head pain syndromes the treatment arc gets scattered and it has the potential to have interference from multiple interventions.  Surgery, nerve blocks, injections and infusions may not have an additive effect and may work contrary to each other.  There is no way a health care provider would understand all the potential issues because this is an uncommon condition and few have the time or interest to methodically sort it out.  Heck we dont even understand what is causing these or how the interventions work.  If you have classic clusters and respond to O2 as an abortive familiarize yourself with psychedelic options and the safe use of the busting option.   It may sound trite or insincere but these molecules can change your life but proper use requires self education, proper preparation, personal responsibility and an understanding of set and setting.  We have yet to produce an effective treatment tree for cluster headaches alone and when you add in a couple of other diagnosis there is no way to coordinate treatment unless you do it yourself.  Dont count of your doctor cause there is no way they have time or interest.  You must be your own advocate.

Edited by Pebblesthecorgi

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This is pretty constant no real break. I was unable to take verapamil as it tanked my BP so bad I  was falling. O2 kinda helps but not really so, on my budget for the little, it does do it really isn't worth it. Sumatriptan injections were my best friend but are becoming less effective, Topomax is now up to 150mg twice a day than throw in the TN medications. 3,600MG daily of gabapentin, Carbamazepine being moved down, so now down to 300mg twice a day to make room for the "New Med" Dilantin just starting so only at 200mg a day, but that will only go higher. As it is ATypical, ALL surgical options for my TN have been removed. But as a plus, I do get as much Zofran as I need. :huh: I am really sorry to vent but right this minute my head/face hurts so very bad and nothing seems to help. I have very few headache-free days and I  can't always abort them, plus ATypical just means it will always hurt and there is nothing other than medication that can be done Neurosurgeons won't touch you with that label.

I can actually get psychedelics but my Wife really doesn't want me to do that as I may have done more than my fair share growing up. I heard that melatonin might help?

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Melatonin does help some folks. You can use the magnifying glass to search for it. A caution on Dilantin, it will drastically thin the enamel on your teeth. My father took it for years for a seizure disorder & had to have every tooth pulled.

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I have been chronic for over a year. I am now doing a trial of pyrimethamine, since I believe I am simply having arterial inflammation due a protozoan call toxoplasma gondii. Toxoplasma gondii is parasite transmitted mainly household cats. My hypothesis is that some CCH sufferers are having an inflammatory reaction to this parasite. Most humans are asymptomatic. This parasite can infect most mammals including farm animals such as sheep, cows, etc.

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I tested below 3 Igm Ige. Active infection is considered above 7+. My hypothesis is I am simply hypersensitive. I will post results if I am successful or not.

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I really hate to be the bearer of bad news, but my first CCH struck on Jan. 11, 1970. My last one was at 4am this morning. I experience as few as 1 per day and as many as 8 (aka daisy chain or bone crusher) with 2 being about average. I have never experienced a remission for more than three weeks-and very seldom that long. Some are much worse than others (there is never a good one), but they have been with me for just short of 50 years (I'm 72 yo). I have used most of the tricks memorialized here with various degrees of success as well as endured all of the misdiagnosis, misconceptions, inappropriate medications, horrible side effects, suspicions of malingering/exaggeration, procedures, experiments, studies, heartbreaks, and disappointments which unfortunately are also memorialized on these pages.  I have been on the receiving end of unbelievable help and compassion from Drs. Kudrow, Diamond (RIP), Goadsby, Green, Cohen, Butler, and a host of others. I have also been subjected to the most egregious and reprehensible mistreatment imaginable at the hands of the most morally challenged as*holes masquerading as pseudo "medical professionals" that the VHA has to offer. Most importantly though, I am still alive and have had a satisfying life-quite different from what I was planning on Jan. 10, 1970 1LT USMC-but satisfying none the less. Since all of my medical care has been provided by military/VA, I actually have all of those years documented. Imitrex twice daily (approximately $500,000+) since it was approved saved my life, but ultimately caused two MIs on consecutive days. Silver lining: discovered asymptomatic CAD and got stents in time. Now its oxygen at 16 mL and opioids (Don't let anyone tell you that opioids don't have a legitimate place in the treatment CH-used properly they most certainly do!!!

Moral of the story: We clusterheads are all different while at the same time we are are the same-special.  We have a wealth of knowledge and experience which we are obviously quite willing to share, discuss, and even argue about.

Wish you great success.

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I had a remission of two months. I overdosed on folinic acid. I took ten capsules of 400 micrograms with 6 micrograms of B 12.

I took them at 8PM and woke at 2AM to vomit. It got me two months of no CH's.

Folinic acid is one medication of a toxoplasmosis treatment protocol. Folinic acid is the primary ingredient of Leucovorin.

Toxoplasmosis treatment link below

https://www.hopkinsguides.com/hopkins/view/Johns_Hopkins_ABX_Guide/540558/all/Toxoplasma_gondii

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