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@michq hey welcome to the forum. You’ll find the most helpful advice and suggestions on this site. I would keep a headache diary. Everything you eat or drink, if you get a headache, at what time, how long, variations in pain. Cluster headaches tend to form a pattern, so if you start to see a pattern you might be able to confirm a diagnosis. I have had constant pain myself 95%) of the time behind my left eye. Every day since last July. There have BARELY been days I am without pain. The pain is tolerable, I can sleep through the night. It’s usually always during the day. But cluster headaches can change over time. Become worse, change times, time of year, etc. look into the d3 regimen. It’s something you don’t need a prescription for. You can get ahead. Kat

Thats alot of info in just under 24 hours. As you can see you have found the best place to be with a lot of people willing to help as much as they can. I can only add some links to this for you to find the mask and oxygen regulators we all seem to use. Most people will get a E size tank and a M60 size tank, the larger M tank will take the same regulator as the M60. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

It's going to take some more time and data to know for sure. Cluster headaches can vary in pain from not too bad to horrible. People in major pain can get hot and break into a sweat but not maintain a fever. I drip in sweat sometimes. Study a list of the major symptoms and keep tabs on it, in the case of cluster headaches you will know more than your doctor. All they can really do is listen to your words and make a diagnosis.

Indo is very hard on the stomach and many who take it take a medicine to protect their stomach. They should prescribe something to protect your stomach lining. I am not surprised regarding your feelings. Any of the diseases we see here - different Headaches, can cause you to become depressed when you see no end in site for the pain that you are experiencing. Living with 'Life on Hold' is not easy. However, most of us find relief and figure out what, if any adaptations we can make to get our lives moving ahead again. It can and often does take time and can be terribly dis-heartening. By joining the community, you have found a whole new group of friends who 'get' your pain and frustration. They understand the mental burden that comes with feeling isolated and alone. They are the people who can help you with suggestions for pain relief and who truly feel your pain, anger and frustration. Use this resource by reaching out like you already did. It is there for that purpose too - so that you need not feel distressed or negative about reaching out. There is hope and there is life out there. We want you to have hope and live a full life. Just think, we all came together due to a terrible disease that most will never understand, feeling alone and pretty well ignored or deserted by the doctors who are supposed to help us. I truly feel that we have all been in that hole. And Clusterbusters and Tonys' Finnish site are both working to put people in contact and present data and personal information to help others get out of physical and mental pain too. They tend to go hand in hand with TAC's. Hang in there!

Hello Tony, I know this is though... She said she tried indometachin, but did she go far enough to see if it actually works ? For hemicrania continua and paroxysmal hemicrania, indocin response is an absolute must otherwise the conditions are ruled out. So I would say, as long as there is no confirmed indo test, the hemicrania continua diagnoses is still unsure. When I did mine, I was also very bad the first day I took it. I was very ill, and vomit the entire day and my stomach hurt terribly. But because it was so important to has this test done, I did a second attempt one week later, and what ? ... no side effects ! Just a bit dizzy and quite some stomach pain the first days. So there is a possibility if she try it a second time, the side effects will be less... it's worth a try. Another option is have indocin as an injection (if that is available in Finland, I don't know) but this way you bypass all the stomach and digestion problems it brings and with an injection, the patient is already painfree within 1 or 2 hours, while with pills, it takes a few days up to two weeks if you do it the first time. If I would be her, I would really try to get that indocin in my system somehow to see what it does. Otherwise, for hemicrania continua and paroxysmal hemicrania there are unfortunately not so many options I am afraid. Topamax can work... but I don't know about anything else. I have been so bad myself for 8 long years and it is only since I got indomethacin that my situation has improved a lot ! But it is still a trade-off between the disease and this medication and try to find the best balance. I think she must also to find a good headache expert. Some are really good (try to look up some names from published papers) and if she documents her case really well, she can be surprised how fast she will be able to get a consultation. Best Regards ! siegfried

Hello Dr. J! I can respond to the temple/cheekbone bit. My CH is a glowing hot railroad nail in my temple. It grows and the pain crawls out of my head and lights up the branches of the trigeminal nerve. Then it bores into my brain and eye. My family sees me rubbing my forehead and the let me know because I am absentmindedly rubbing while talking or watching TV. And that is the end of my evening with uncontrolled CH. They began with one a night at 8pm. Then, weeks later they began to hit at night - right after I fell asleep. As the weeks went by, it worked up to its' peak of four per night, each 2:15 long. Long and short is, as the cycle moved forward, the head got worse. Then when it was over, they vanished. When I first began this journey, a long time ago, I was a mild chronic with typical behind the eye pain. Then I had a 10 year hiatus! But, they did return as Episodic and I found out what a '10' was. It was a huge shock. However, I now have them under control and have not had a cycle in a few years. All thanks to the information you will be reading here. Verapamil is a first line treatment for CH in the medical field. Along with Triptans. Some can get good control with Verap only. Others, no. The Neuro should think of those two first, along with a Prednisone Script for short term use. It helps provide pain relief while the Verap builds in your system. Long term Pred use can cause severe bone issues - AVN. No matter what he prescribes, you want O2!! Aways, O2. It can be a problem with insurance on occasion, so push hard. If you can't get a script for medical O2, then many set up an O2 welding tank and attach their non-rebreather mask to it and huff away. It is not 'dirty' O2. Read and ask away!

...i just hafta say...as an x/food scientist....that this is the most appropriately named food extent...it looks, smells, tastes exactly as named... ...back to your regular channel...pardon the crude interruption.....

You are right, constant pain is not really a symptom of CH, and you are right -- usually the pain is not as mild as you describe it. Aside from the red eye, it's hard to know why that doctor concluded that you have CH, and even harder to understand how given that diagnosis, his prescription was an opioid, when opioids typically have no effect on CH. As xBoss said, there is often sweating along with CH, but not necessarily fever. Aside from that, it all makes sense. Here's a list of typical CH symptoms (in addition to the severe pain): "Cluster headache attack is accompanied by at least one of the following autonomic symptoms: drooping eyelid, pupil constriction, redness of the conjunctiva, tearing, runny nose and less commonly, facial blushing, swelling, or sweating, typically appearing on the same side of the head as the pain. Restlessness (for example, pacing or rocking back and forth) may occur. Similar to a migraine, sensitivity to light (photophobia) or noise (phonophobia) may occur during a CH. Nausea is a rare symptom although it has been reported. Secondary effects may include the inability to organize thoughts and plans, physical exhaustion, confusion, agitation, aggressiveness, depression, and anxiety." As xBoss also said, since there's no objective test for CH (MRI or that sort of thing), you'll want to monitor your symptoms. If things persist, you ought to get to a headache center for the greatest likelihood of a competent diagnosis and treatment (you might consider making an appointment now, since the wait to see a doc is often quite long).

Good evening, so I’ve started getting headaches again and am unsure if they are cluster or not now.. I’m currently loading D3 regimen and have looked after any way to get rid of these things. When I get a headache a knot forms in my upper back on the side of my headache, when this happens and the knot is very deeply massaged the pain begins to subside (Like someone putting an elbow into my back with all of their might). Does anyone else experience this?

Give this a shot...

Poland book is one of several relatable books showing up in this psychedelic ‘rediscovery’. They all sort of follow the same pattern adding the writers unique experience and perspective. The history and fables are all derivative from the early 60s. The value of these stories. In popular press is it reinforces the safety of psychedelics properly used and clearly shows efficacy in managing some very difficult to treat conditions. There is so much valuable info out there to understand the busting option. Most of the studies regard mental health but we have much to learn about these substances from other users. I firmly believe each person exploring a treatment which is illegal must understand what they wish to accomplish, how to use the medicine safely and effectively. Ultimately one must break from societal mores in order to try this treatment

Cl', there has been a lot of discussion here about the "cluster knot," which sounds like what you are describing. I believe a few people have had some relief from very forceful massage of that area, so you're not alone in that regard. I think most people found that even strong massage was not enough to deal with it. One prominent person with CH (Hipshot, who no longer posts here), got relief at least for a while from Botox injections into the knot and other areas around his upper spine. If you put the phrase "cluster knot" into the search bar at the top right side of the page, I think you will find at least a few discussions of it.

I have no idea what this is about but I feel so sorry for everyone involved. I feel sorry for us. I am a naive human being who wants to believe good in people and honesty is essential in everything I do in life. For the longest time I thought that having a cluster headache somehow shelters one from being or becoming dishonest, or manipulative and such. It does not. In my eyes clusterheads are more compassionate and understanding than an average joes but maybe due to our extreme, violent, mercyless and for some very prolonged suffering we have our exceptions to confirm the rule. C'mon. We are the underdogs already, big time, with all that we are up against in life. Be kind, to each other, to yourself. Respect to admins. Not an easy task you have to carry out year in year out. PF wishes !

I surf the web and bang my head sometimes.. Does that count?

Hi Everyone Just wanted to see if anyone had a recommendation for a neurologist in the Dayton Ohio area. Thanks. Appreciate any good or bad experiences