Clusterfakted

This sounds a lot like what I experience. I don’t have a confirmed diagnosis of CH probably because I don’t get a headache unless the muscle at the base of the skull gets tense. I am in a perpetual state of feeling sluggish off and on throughout the day as attacks come and go. My left eye will droop slightly and become weepy along with left side nasal congestion or it will run. I can feel pressure in my left eye, sinus and temple. My brain feels like it is in fog, I have trouble concentrating and thinking clearly. I also get auras of spots, flashes of light and light distortions. But I also get migraines without headaches. They completely cripple me when both CH and a migraine are active...like today.

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?

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.

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.

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?

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.

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!

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!