Echo

I've heard of sunlight being a (on the rare side) trigger for CH. Personally my eyes have grown sensitive to sunlight during hits and from spending 99% of my life indoors due to CH. Triggers I come across outside is cigarette smoke and certain heavy perfumes. Walking my dog is a game of eagle eye smoker spotting and holding my breath when such people pass me by. If sunlight is truly the trigger itself, how about some really big and dark sunglasses? A good uv filter on the glasses might ease her troubles a bit?

Hi Grumpytom, Sounds familiar. Sometimes a regular painkiller helps ease that after-hit-pain for me. Have you been on verapamil all this time? You might have built up a tolerance for it if the attacks are pushing through now while the meds kept it at bay before. Upping the dosage a bit or taking a break from the meds might help.

Hey John, Let's start at common sense. Don't diagnose yourself based on google results or Youtube videos. The international headache society for headache lists the following diagnosis criteria: A. At least five attacks fulfilling criteria B through D. B. Severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes untreated. C. Headache is associated with at least one of the following signs that have to be present on the pain-side: 1. Conjunctival injection (red eye) 2. Lacrimantation (basically watery eye / tearing) 3. Nasal congestion 4. Rhinorrhea (runny nose) 5. Forehead and facial sweating 6. Miosis. (small pupil) 7. Ptosis. (hanging eyelid) 8. Eye lid oedema (swollen eyelid) D. Frequency of attacks: from one every other day to eight a day. (Found this list in Pringsheim's 2002 article called "Evidence for a disorder of circadian rhythm and hypothalamus function", among other articles) You'll notice the diagnostic pain level is "severe". On a scale from 1 to 10, severe is usually described as the 7 to 10 zone. Not "10 only". The specialist knows which features are important for the diagnosis process and for distinguishing CH from similar conditions. If you want to dig deeper into this... turn to pubmed or google scholar. There's lots of scientific medical documentation on CH, including diagnosis criteria and data on pain levels of hits. Still in doubt? You'll find info on similar conditions through the same channels if you want to rule out alternatives.

I questioned myself because of the same reason and did not seek medical attention during my years as an episodic clusterhead because the pain levels described did not (yet) reach those epic proportions. They hurt, a lot, but I still imagined child birth to be worse for example. In fact, I used to dismiss them thinking I must be getting a cold or something. (After my diagnosis I learned they weren't normal)The worst possible hits didn't come until I became chronic and now the pain level of my hits vary greatly. Sometimes it's merely enough to inspire a lot of teeth grinding and cursing. Sometimes it's enough to produce tears. Other times it's enough to start trashing my living room out of desperation. After speaking with dozens of neurologists and reading reports of countless of other clusterheads, I've come to realise I'm not the only one. It simply varies per person. Some only get the big hits, some only get medium hits, some get a mix. Some find it varies per cycle. My advice is not to attach to much value to the pain level.The diagnosis process for CH is far more concerned with its unique and stereotypical features (such as the rhythms in which the unilateral attacks come, the symptoms etc). You can talk to your doctor about crossing similar/alternative diagnoses off the list, if you haven't done so already.

CHfather: thank you very much for the information. Exactly what I needed to know. Especially the guide is very welcome. I'm impressed. I wasn't going to aim for financial compensation but I want this on record. I just found out why I had those horrible weeks of extra pain. You see, that doctor put me on topamax and I noticed an increase in pain when I hit 80mg a day. I contacted him about it and asked if I should stop taking it. He told me its impossible for topamax to make things worse and to continue the meds and increase the dose to 200mg a day. As it turns out, eye pain, eye redness, is one of those side effects you should seek immediate medical help for when you take topamax. Which I did, I reached out to my neurologist and had my eye examined by my GP cause it just kept getting worse. Now it turns out these meds caused the liquid in my eye to increase, increasing the pressure on my eyeball which can lead to permanent damage and even blindness, if left untreated. So now I also need an eye doctor. Financial compensation might not be in the stars, which is fine. That won't fix my eye anyway. But I wanna make damn sure that the hospital is aware of how this man practices medicine and hopefully help prevent other patients having to go through what I had to endure. As if being cursed with CH isn't bad enough, nobody should need to experience the bonus level of hell you experience when an already under pressure eyeball gets a CH attack on top of it. If it weren't for you guys and the hope you gave me during that time... words can't describe.

Thank you guys for all your wisdom and support. It truly helped me hang on to the hope when bad turned into worse. Time for an update. I have good news and ... well I could use some advice on the bad news. First: the good news. For whatever the mystery reason was that my attacks increased so much, it seems they have retreated again. No not remission but... different in a better way I suppose is the best way to phrase it. Things got a little better for me when I increased my verapamil. The pressure still comes and goes all day but it's as if the attacks are blocked and only manage to get through some of the time, rather than the full hours long. Then I had a few miracle good days where I barely had any attacks at all for about two days. Decided to lower the dose back to 3x120 (due to side effects) and oh my gosh. Normally missing 1 dose would be enough for any discount on pain to go away but it's still on a managable pain level most of the time and still shows the scattered attacks as I described before. Also took on the vitamine D story. I have an appointment with my GP next week to have that checked out. Words can't describe how relieved I am. I'm still far from healthy, granted. But the horror show halted at least. Hopefully it was just an unlucky bad period that won't return anytime soon. Whatever the cause is, I'm glad things went back to normal a little. Life ain't easy but at least this is a level I've become used to handling and have a few hours in my waking life free to enjoy life again. Onto the maybe bad news. I'd really appreciate input on this one cause I'm not sure how to handle it. It seems my doctor has dropped me entirely but also made some "mistakes" in the past. For example, - he claimed verapamil and lithium do not interact and gave me both at the same time without keeping an eye on me. Now I've looked up some pharmacy info and see those two listed as interacting on most of the informative websites about verapamil. - I had a severely bad reaction to the verapamil when I started taking it in December 2013 and called the hospital to tell them what happened (a gp had to come to my house and pick me off from the floor, quite literally). I told them I needed to know what to do with the meds, continue or stop or adjust the dose or what. Never heard back and had to wait for our next face to face consult for answers. (That was a month away) Now I thought that was a one-off mistake, which he blamed on the reception staff. But lately he's showing more of that behavior. - Renewing my verapamil prescription takes him a week(!). - Despite agreement to keep in touch through e-mail due to my bad health, he doesn't reply to more than half the emails and when he does reply, he doesn't fully answer my questions or even bother to politely write a greeting and conclusion. - He actually misspelled my name when he did bother to include a greeting in an e-mail full of spelling mistakes and grammer mistakes. I'm no grammer-nazi but come on.. it comes across as pretty careless. When I asked him if it was possible to prescribe me something to help me sleep (for long term use) other than melatonine, because it's not covered by the insurance and very expensive to use. - He prescribed me something which the pharmacy warned me was meant for short term use and is addictive on long term use. Oh and it wasn't covered by insurance, either, cause he failed to add the code to make it so. No thanks doc, I don't need addiction in my life. - What also bugs me is that he spends a lot of my face to face consult time talking about MS which has absolutely nothing to do with me or my condition or the reason of my consult. He just likes to hear himself speak and bluntly talks over me when I try to get him back on topic. - he also answered a handful of calls on this cellphone during my consults with the excuse that it's a family member with health issues or something. - A big whopper is a missed consult. I really needed a neurologist's advice during my recent bad period and he just wasn't to be reached. Did not reply to my emergency email. Did not answer the phone. I booked an official phone consult, in which he was supposed to call and he simply didn't call. The staff apologizes and explained they tried to get a hold of him but he wouldn't answer their call either. So I made another official phone consult appoint through the reception for the next day and he called me half an hour after the appointed time with clear disinterest in his voice. At this point, I do not trust him anymore. I no longer believe he is fit as a doctor. But I'm stuck in the middle. The hospital he has forwarded me to, still has me in their start up procedures and haven't even assigned a proper neurologist to me yet. So technically, I don't exist there yet and have no doctor to turn to. I'm stuck in the middle. The best I have so far is an appointment next week with an intern there for the in-take before I get a real doctor. I want to file an official complaint against my current neurologist, though I'm not sure how to go about doing that. Should I? Am I being unreasonably frustrated with my doctor or are these things indeed major errors on his part? Have you guys ever experienced a doctor behaving this way? An objective view would really be great. Maybe I'm just expecting too much from a doctor but the bad period scared the hell out of me and I really want to be able to count my doctor to catch me when things take a turn for the worst.

Thank you so much for all the supporting messages! I'll try to clear things up best I can. @CHfather I haven't tried that yet but noted! It's worth a shot, even if it just ends up eliminating similar conditions. @ThatHurtsMyHead Humor is always welcome! @Ajax Thanks for the suggestion. I'm not familiar with ketamine (had to look it up) but from what google told, it sounds scarier than shrooms or RC seeds. Maybe because of the words party-drug kept popping up. @Bejeeber 1 True 2 True 3 Funny enough.. my "ch specialized" neurologist has managed to teach me an awful lot about MS during out consults (No, I did not ask him to). Which seems to be his true passion. Sigh. But at least he was very cooperative with anything I wanted to try. Definitely worth asking if I can get some sort of calming drug before the mushrooms cause I'm definitely going to be anxious about either getting a bad trip or attack. Hopefully the doctor will understand. @Tony Only The only thing I'm on right now is verapamil (4x120mg) and melatonine to help me keep a regular sleep pattern. As it happens, I take vitamin D cause I don't get out much these days but thats about 10micrograms a day. I've been signed over to a different hospital and meeting my new neurologist on the first of july. I'll put him to work right away then! Detoxing from the meds is not possible in its entire. I try meds for roughly a month and if they haven't worked then we quit and move on to the next thing to try but the one consistent thing is the verapamil. They buys me a discount on the pain intensity but not without serious side effects. If I don't take the verapamil.. if I miss even one dose, there's hell to pay, even more so than usual. Thankfully that's one phrase I don't have to explain to other CH patients. But I don't dare to let that go. Can I be on verapamil and still try the shrooms? On your second post: Yeah I had periods of intense headaches around the eye for (roughly 3) years already but these periods were short and infrequent. Till last august when suddenly those headaches came to visit again only never left. Now not only don't they leave, but slowly have been getting worse over the course of the past year. @razorPP It gives me great hope to hear it confirmed from another chronic that this Vit D3 thing is worth trying. So it doesn't decrease the amount of attacks but it does lower the pain? The seeds sound nicer as well. Preferably I can use something that doesn't make me trip. My dog stays glued to me too during attacks. @DrTy2 You said it. That is exactly my worse fear, that this keeps getting worse and worse and the meds work less and less. To answer your question: I have 5 attacks a day on average. Each lasts 3 hours lately (they used to last around 1,5h) They strike me day and night. They used to wake me up at night but that happens less often now that I use melatonine and simply sleep less hours. Every day always starts and ends with an attack in any case. They strike me around the same time every day, pretty much like clockwork, all of them. Not to the minute but within the 30min timespan. No vomiting, no shivering, no auras. I do get a runny nose and the sensation as if I had a basketball thrown against my nose and a tooth ache and or ear ache while the pain in and around my eye hits. My eye becomes watery and bloodshot and the eyelids droop a bit. I don't know about bradycardia (did I spell that right?). It never occurred to me to measure my heart rate. I get very restless and start pacing till a certain pain level where it becomes a matter of sitting and rocking and clutching the oxy mask with 1 hand and a rosary in the other. Again, thank you all so so much for the supporting messages. It put a smile on my face to read the messages and hope in my heart again to think that maybe it could be as simple as a vitamin in the end and maybe things can be better within a matter of weeks. Maybe. There has to be something...

It's been a while since I visited the forum but I find myself in a dark place where I just don't know where to turn anymore. The internet is full of contradicting stories. The doctors all say different things. The most annoying thing is all is that my doctor doesn't seem to know what he's talking about half the time. Well he admitted at this point that he's out of ideas and he's referring me to another hospital but they have a nice long waiting list. So now I'm stuck in the grey zone. Meanwhile... meanwhile things go from bad worse. The attacks sneakingly become more frequent.. they become longer.. they become stronger. The past few weeks my right eye is permanently bloodshot and under pressure. The shadows are always there. A sense of normal is long gone. I'm officially chronic and the government doctor had one look at me and said.. yeah.. no you're not gonna be expected to work. I don't get out much anymore, the attacks are too frequent and too long and when I do have a good day... well I'm just too scared to run into a trigger or being too far away from the oxygen tank. Not that the oxygen helps much, despite the mask you guys recommended. It still doesn't abort the attacks. Is this normal? That these attacks slowly get worse and worse as a few months pass by? Does anyone recognize this? We've tried several meds already. Verapamil, steroids, lithium, melatonine, topiramate... oh the topiramate. If anything that stuff seems to have made everything 10x worse. Maybe that's just a wicked coincidence but ever since I tried topiramate (Ive quit that) everything got 10x worse for me. In all honestly, the only thing all these meds have accomplished so far is make me ill and give me side-effects to endure. Everybody keeps telling me to try the shrooms. You're dutch so it's perfect, legal and everything, try the shrooms! But surely I'm guaranteed a bad trip when I'm in this bad state? I've never touched drugs like that in my life. Does stuff like that even work on a chronic? I don't know... It sucks when the hospitals put you on these idiotic waiting lists... when your CH specialized doctor looks at you and admits he has no idea what to do with you anymore. Meanwhile the CH demons are just getting stronger and the path they're on isn't a place I wanna go...

Good to know! The doc did mention he has prescribed higher doses (for different conditions). I'll try cranking it up to 20mg if 10 doesn't do the trick. Have people gone higher?

Don't worry I did. Had a meeting with him yesterday and asked if I could quit in 1 go or had to build it down, he said it was fine to just quit. I was on 2x400mg a day for 3 weeks. So far I've been off the lithium for a full day and notice nothing but improvement. No problems (yet).

That sounds like something to try before trying shrooms! I'll look into that, thanks Absolutely and today will be my first day off the lithium. Who knew something like this could make a person so happy. Lithium did nothing but make me feel terrible, I'm so glad to get rid of it!

That's right, I haven't tried them yet. Still nervous and too much of a coward :-[, anxious about getting a bad trip. It's still on my list and I often think about it, looked up where to get it and everything... but I didn't want to try that with verapamil + lithium in my system already messing me up. Shrooms is one of those last resort options for me, I need to get quite desperate before I will go through with that. Right now, melatonine is a clean thing to try so I will try that first.

I am very pleased! The optimask does a better job than the old mask in acute treatment of attacks. It's not a 100% success rate but I think that's because I'm reluctant to continue using it for an extra 10min after the pain stops or that I'm sometimes late to use it. (Still stubbornly wait to se if I can't kill it with an energy drink first, cause its faster) I showed the mask to my neurologist today. He admitted he had no idea what sort of mask we get when he prescribes oxy therapy but he was very happy to hear all this and copied the information.

So, after several weeks of verapamil and then several weeks of verapamil + lithium and still not getting any good results, the doc scratched his head. I discussed with him that I had seen melatonine on the website of the mayoclinic in their CH section. He looked it up on the spot and a few articles in Pubmed and agreed to give that a try. Very curious to see what's going to happen. It should reduce the frequency of attacks. *fingers crossed* If anyone has any experience with melatonine (1x10mg a day), please let me know. It'll be good to compare notes. Cheers!

Thanks for the tip! About the oxy, I haven't had a chance to try yet. The CH shop didn't have any on stock but my brother was able to work his doctor magic to get them elsewhere and it is being shipped to me. It should arrive sometime this week *fingers crossed* Though it would be great if I can abort attacks with the oxy, the only way to get a normal life again is to find a way to stop the attacks. I have another appointment with the doc on the 11th to discuss the meds and might wanna try busting before he tries another drug. Still nervous about it though... :-/