CH without pain?

[Clusterfakted]

Hello everyone,

I am new to this site and to learning about CH so please forgive my ignorance.  I was wondering if anyone here had heard of or know of anyone who presented with the symptoms of CH but did not feel any pain.  I know this must sound strange given the level of pain reported by people (such as many of you) who have confirmed diagnoses but I am asking for myself as I have been battling various health issues for the past 6 years.  I have managed to overcome/accept/heal most of them but a neurologist recently diagnosed me with having migraines without a headache (I get the aura and the neurological effects of the migraine but 99% of the time no pain).  He instructed me to track my triggers, keep to my normal routines and all the typical things that tend to help migraine sufferers.  At first I thought I was having 2-3 of these migraines a day but last week I got one of those rare attacks that cause pain.  The pain escalated quickly to about a 6/10 on a pain scale, was isolated to the left side of my head (all previous headaches have always been on the left), my left eye felt like something blunt had jammed in it and it was stinging & weeping.  The attack only lasted 2 hours and from what I have read a migraine should last at least 4 hours; the pain had a very sudden stop, 1-2 minutes to from pounding to no longer feeling pain.  When I started tracking my symptoms using this new information it seems like I am having 7-8 attacks a day and they are generally about 2-3 hours in duration and occur like clockwork around the same time every day.  If anyone has any ideas what I could/should do I or if someone has gone through something similar I could really use some direction for when I see the neurologist again. Thanks!

[CHfather]

The attack you experienced sure sounds like CH. One difference between migraine and CH is that while people with migraine often seek relief by lying down in a dark room, people with CH generally can't sit or lay still: they are "restless" or "agitated."  A proportion of people with CH also have migraine-like symptoms, including aura, so those symptoms don't rule out CH.

There are people whose treated CH appears with a feeling that there should be pain, but there isn't any. This seems to most often be true of people who are treating their CH with psychedelic substances.  I don't know how it would happen with untreated CH. 

[Clusterfakted]

Thank you for your reply CHfather! I primarily experience agitation but I also experience wanting to rest in a dark room. It is hard to tell sometimes because I often feel tired or exhausted after an attack and without any pain to clearly identify when the attack starts and stops they could blend together. To make matters worse while the attack is on I have the cognitive ability of a gnat, the attention span of a hummingbird with ADD, and the memory of a siv. I will record more closely if I am feeling agitated or tired. Thanks again!

[CHfather]

The term "cluster migraine" is sometimes thrown around by doctors with the wrong meaning, but there is apparently a very, very small segment of people who have symptoms of both at essentially the same time. (This is different from the group that has both migraines and CH, but can tell when each is occurring.)  The sharp decline in cognitive ability is also often experienced by many people with CH (but I don't know if that is also true sometimes of people with migraine).  

As you can see, I have quickly reached the end of my potential usefulness. Maybe someone else here will have more useful insights.

Is your neuro a headache specialist, perhaps at a headache center?  It might take that level of expertise, not just the expertise of a general neuro, to help you sort this out. 

 

[Clusterfakted]

Thanks again for your reply CHfather! I would have responded earlier but I have had some bad days this week. Is there anywhere you could recommend to find information on “cluster migraines”? The neurologist is a general neurologist I believe. I only saw him once and it was for a different problem but I took advantage of of the appointment to ask about my other symptoms. The neurologist also suffers from migraines without headaches, so he understood what I am going through trying to deal with these symptoms (one of which for migrainers is cognitive decline during an attack). So my plan at the next appointment is to get his input and most likely a referral to a headache clinic. I am hoping he will give me something to try while waiting for the referral to be processed.

[CHfather]

This is the article that I remembered having read: https://www.ncbi.nlm.nih.gov/pubmed/17367596

Aside from oxygen (which works for CH but generally doesn't for migraine), there's a lot of overlap in the treatments for both conditions: pharmaceutically, that would be verapamil as a preventive and a triptan as an abortive.  Non-pharmaceutically, the D3 regimen and busting are both effective for migraine.

[Clusterfakted]

Thanks for the link to the article and the treatment summary! I will have to wait to see what the neurologist thinks. This past week my symptoms have changed a bit. Normally I don’t feel anything when I am having an attack but now I feel my left eye and left side of my head are under pressure. I also had a moderate headache yesterday evening and a mild headache this morning when I typically go months without one. If this is CH, is that how cycles start?

[Freud]

The start of a cycle or the disorder itself presents in many different ways. I’m chronic so I can tell you what happened to me when it first started. I had attacks of severe tooth pain for about 4-6weeks on and off. A little facial pain as well. Then out of no where I got struck while driving alone on a 3 hr trip about 30min into it. It was a full blown kip 10. I knew either an aneurysm was about to rupture or I was having my first CH (I’m a PA and had briefly studied headaches while in school).  Since then I’ve had CHs every day...  I did get a 2 month brake before I was put on a med that was a blocker and had a long half life... but when my CH came back they just started full throttle. Many people report a ramp up when they start as well as associated symptoms with out a CH like my tooth pain. Sinus pain/ pressure, facial pain, eye and scalp pain. Then some time later (days to weeks) the CHs start. 

[spiny]

CH is an odd beast. Any area in that quadrant of your head can be subject to pain as the Trigeminal Nerve serves as the major nerve for that side of your head and face. So, a lot of territory to hit. Just a bit to keep in mind.

You can have low level Ch's or major ones. You will swear that a particular tooth is killing you. It gets removed, and the pain remains. You can get an ear ache, sinus pain, jaw pain, and on and on. That is why so many have had teeth pulled and sinuses reamed out surgically. So, the pain can be very different at different times. I had a cycle once where every hair follicle in that quadrant hurt constantly. Shampooing was a real bear for about 5 months. Most experience the worst pain at the back of the eye. Others get it in the temple. For me, it is almost always the temple. It feels like my head is being squeezed in a vice while a railroad spike that is red hot is pushed into my head through my temple. I do think that for many it is constant pain, not pounding or throbbing. 

Personally I started out Chronic, but with low level pain. Then I got a long reprieve. They returned episodic and blew the top off the Kip scale. A cycle will begin with one hit per night and quickly, a few weeks at most, ramp up to four every night. That takes care of the whole night. They last 2.25 hours untreated and there is a 15 minute break between hits. I sleep from 6am to 8am. After about 6 or 7 months I am not a very nice person. Not mean, just no laughter left. So, I tell off traffic and such. And avoid people when I can. CB is the reason I still can laugh and live. There are ways to manage it so you are a real person again. 

ATB

[Clusterfakted]

I am sorry to hear how much CH has affected you Spiny but I am very glad to hear you found some much needed support.  Situations like the one you describe are brutal to go through alone.  Thank you for your reply as I found the information very helpful.  Is there a post where people describe how CH started for them? If not, it may be useful to collect that type of information. Your description made me think back and I remember about 4 years ago I started getting what I thought were tension headaches but now I am not sure. I always found it odd how the pain would suddenly increase for about 2 hours then suddenly drop down low.  They would come and go throughout the day and sometimes wake me up in the morning.  Most of them I could manage, perhaps 5 or 6 out of 10, but the intense ones were just vicious easily an 8 or 9 on the kip scale.  The left side of my head felt like it was being crushed by a vice that wouldn't let go and every time my heart pumped blood it felt like a knife was stabbing into my brain.  No pain killers helped, not even the opiate pain killers I had left over from when I pinched a nerve in my back.  I still fear the return of those headaches even though I didn't have them very long and will do whatever I can to avoid them.  The reason I did not have them very long was because I noticed that the neck muscle at the base of my skull on my left side (headache side) was incredibly tense and was causing the headache.  So I went to physiotherapy to have it treated and the therapist gave me exercises to stretch it out daily.  After I got that muscle to relax the headaches went away and so I thought they were tension headaches.  To this day whenever I feel that muscle tightening up I get heat on it, stretch it out and make sure my posture isn't so terrible.  The other symptoms I was having were attributed to my chronic fatigue syndrome as at that time I wasn't having any noticeable aura.  If I do in fact have CH then the pain of the attack is controlled by that muscle in my neck but I am still suffering from the neurological effects of the attack.  It is still debilitating but preferable to the headaches without a doubt assuming CH is the culprit.

[spiny]

Opiates do not help. Much to the surprise of many doctors!!! I had an upper and lower scope last year. To be done with sedation, as is the norm. I got hit while under the sedation and was writhing around on the table so much they had to give me general to finish the scope. They had been warned prior that I might get a hit from the anesthesia. And asked to have 15lpm of O2 available when I woke up. They told my husband it would be at least 30 minutes before I woke up as they had to do a general. Well, I was up huffing O2 in five minutes with a moderate hit. They were great and handed me the O2 without question as soon as I sat up. It paid off to tell them of my CH and how to handle it! 

The neck pain is very common with CH unfortunately. Some get it prior to a hit and some after. Over a cycle, it seems to get more painful to me. Many refer to it as a 'cluster knot'. It does feel like a hard knot at the base of my skull. And it will not be massaged out. It is good that you have a way to mitigate it to some degree!  When my neck hurts I can be sure a CH will follow soon. There have been a few cycles where the knot stayed the entire time. 

A thread on how Ch starts for members might be a good idea. Many have posted and asked others over the years. Usually there is at least one other member who can relate to any members first battles with the beast. I find that that one person who identifies with what the new member is saying always seems to show up and add their bit to the conversation. It helps a lot to read that someone gets what you are saying! 

[Clusterfakted]

I am glad to hear the doctors took you seriously and were prepared! Massaging didn’t help me much either. It helped relax other muscles in my neck and shoulders that were also pulling on my neck but didn’t get the knot. The physiotherapist and the stretching got rid of the knot but it took a few months. 

[Clusterfakted]

I recently met with the neurologist and was pleasantly surprised that he has pretty solid knowledge of headache disorders. Since my presentation is atypical he simply called it Trigeminal Autonomic Cephalgias and prescribed 120mg Verapamil to test out his theory.  The neurological symptoms are throwing him for a loop as he said that if the duration of the attacks were longer he would conclude I had an atypical migraine presentation but once he asked if my eye weeps and I get congested/runny nose on the headache side he said it sounds more like a TAC.  When I described what I thought was a tension headache years ago he flat out that sounds exactly like CH but he hasn't heard of the pain disappearing like that before.  Hopefully the verapamil has some effect to confirm his hypothesis but given what I have read on this forum I suspect the dosage will be too low.  My plan for the next appointment is to bring some research about case(s) of CH without pain, the effect of the ketogenic diet and myofascial trigger points. If all else fails I may have to irritate that muscle in my neck to let the beast out for all to see but I am not excited about that option for obvious reasons.  I don't suppose anyone else has gone through a similar process and could offer some pointers?

[Siegfried]

Hello Clusterfaked,

I have both, migraine and CH. Migraine started when I was around 10 years old (so going on for 40 years now) and CH started in 2012. You can just look up my first posts in this forum as I have given a lot of detail about it when I started to have CH.

"Cluster migraines" do not exist. But there are some people that have both conditions. Mostly the CH attacks will come first and that will trigger a migraine attack. That is very common. Having those together is far from fun and to be honest, it's a complete nightmare. 

The average time for a migraine attack is around 20 hours. Migraine starts very gradually and also fades away very gradually. There is no abrupt start or end. CH is different. This stops within 10 seconds or something. Also the pain is very different. Migraine is diffuse (you can not really pinpoint a location in your head) and sick making. CH is sharp, focused and brutal. Each have their own problems to deal with. 

I am always very surprised how those two conditions can influence each other and take over characteristics from each other. The difference between a cluster shadow and light migraine is often impossible to make. But I can know the difference by using oxygen. CH respond on oxygen very well and if not abort, it should diminish the pain very rapidly. However for migraine, oxygen does not have any effect. On the contrary, the breathing through a mask will make your migraine attack immediately worse. There are some other key differences as well that have been pointed out by CHfather.

But anyway if you have more questions pls ask ! 

All the best !

siegfried

 

[shadowcatsam]

On 10/29/2019 at 8:18 AM, Siegfried said:

I have both, migraine and CH.

 

I as well; isn't it wonderful to be EXTRA special?  

I'm a psychological outlier in a number of ways as well (dissociative super powers!).