spiny

From my reading, yes. The guys have discussed it on occasion. Personally, just getting started I get slammed if it is night time. Day time - nope.

Welcome Marcelo! Very happy that you found us. There is a lot of info to read and absorb. Ask all the questions you want. There is a banner at the top of each section 'New Users - read here first' That will give a great start. What meds are you taking and do you have O2 with a non-rebreather mask? High flow? That is the main game changer. And check up on the D3 Regimen. Cheap, easy, and all good for you vitamins. It can lower your pain levels and slow down the ramp up. Living on two hours sleep for months will make you feel pretty rotten. Posts are not 'boring' nor are there any stupid questions. ATB!

Yes, it is an emergency. There was a PA or NP, I don't recall exactly, at the conference who wanted to treat CH in her own practice. Well, she went through a lot to get licensed and some additional education to allow it and a Neuro to attach to in whatever way they insisted on for licensing. She treats every Ch'rs call as an emergency! I call that very awesome! I think that she just does Ch, but perhaps other headache issues too. She was great. Patient first - this is an Emergency! They always get seen the day they call her office!

I have been on it for at least 5 years now. It has been a huge help!! The 10,000/day keeps me at about 103-105ng/ml year round. I used to drop it down to 5,000 during the gardening months when I was in the sun a lot. Now the sun sets off my head, so I don't get out there in the heat of the day anymore. My blood work will be repeated next month and I don't expect my levels to have changed much. I am not sure about the raising of the blood value. To date, 10,000 has worked out very well for me. If I want to see if it is really working I just need to miss taking it for two days. Then the beast returns!! Normally the vitamins are missed if my house goes crazy or something. I only test drove it once on purpose!

I posted a bit in Research Thread. It is two years old, but it is a lot more up to date than your Neuro! The Dr. McGenney is a member here. I would print it out, take it to that 'doc' and let him read it while you watch!!! The guy is killing you slowly with a ton of meds like that and no O2!!! He needs to get it together and know the proper way to treat CH today. O2 is the #1 abortive, triptans are there too, but in injection form. Or the nasal spray if shots can't be handled by the patient. Verap is the main preventative, and Pred is used in a short burst til the Verap kicks in. This is all stated in Ch treatment protocols!! If it is not working, dump it! Some have to be tapered, so do it with care if you decide to stop taking them. Is the doc doing EEG checks when your dosage was upped on the Verap? That is a hefty dose. What is your blood pressure now? Please read that piece and keep reading and asking questions! ATB

The TSA is very specific these days about what they are checking for -explosives! Not any meds or other stuff. Once you are through the TSA checkpoint, you can buy drinks in the shops on the concourse that you are allowed to take on the plane. I recently took on this hurdle after avoiding flying for 15 years. Got through just fine. Had shadows all one day after the flight, but that was it. It was over the Equinox which is my traditional start date, so, pretty scary! However, I was not in cycle nor did it precipitate one. Good luck! If you have a SPUT, take it as a preventative. It isn't explosive!

Welcome Seth! Read and read! Ask all the questions that you have. Someone will have an answer likely. ATB

This is two years old, but Boston Headache Doc is quoted several times regarding current therapies for prevention and treatment of CH. A good read!!! https://www.neurologyadvisor.com/topics/migraine-and-headache/treating-cluster-headache-weighing-current-therapies/

And the Target Bulls Eye? Seems like the remaining one used a peacock. Yes, I used to sit and stare at the symbols on Saturday morning waiting for the cartoons to begin! Here's a bad one. I also remember waiting at night for programming to start! We watched one that panned in thru a keyhole. That was pre Mickey Mouse Club days for sure! It began programming about 6pm I think. And went off about 10pm.

I loved that show!!! I did not remember his characters name. Good catch!! How about My Favorite Martian? Remember that one?

Batch does suggest separating the Calcium from the Verap if you are taking it. Offset to prevent issues as stated. And that is the likely reason for using K2, not K! You copied this from the site Batch has? Can you post the link to that? Thanks Brain!!!

Excellent CHF. Not working on the board for me either! Did he get an email or PM from here? I'll pm our wonderful IT wizard about it.

Yes, it is. If you look it up, that nerve covers half your face and 1/4 of your head. That includes everything on your face and those teeth and sinuses. It even includes the hair on your head in my experience.

Sounds like a good plan you have. I have had and read of people having a reaction to the fillers in some meds. Like a name brand will have Y fillers and the generic will have X fillers. So, some people can take one and not the other. So, you might consider a different multi. Just a thought if changing the fish oil does not solve the issue. Are you taking the Benadryl? Batch is indeed not getting PM's at this point. Not sure why. But, he is very devoted to helping all and will show up when he is available. He never has let anyone down who PMed him to my knowledge. But at the moment that is not an available route to follow. We will wait to see if CHF's mail got to Batch.

Also possible CHF. And can be checked with a trial run of Indomethacin rather quickly!

Ilya the vitamins will be a big help. As you know, your D is in the trash and really needs to come up! And I share the Equinox date with you! Many start a cycle at that time of year. Sucks, but at least you have an idea of when it is coming and can prepare to battle if needed! Let us know how breaking them up worked for you! Oh, are you using 'burpless' fish oil? I could not stand the other one. Going 'burpless' helped me a lot. I'll see if I can reach Batch too.

Hi Dlions and welcome. Just tiny bit to add. Often we have what we call 'shadows'. They can last all day. A low grade head pain compared to a real hit. I think this may be what you are describing. It makes your head sore and ache too. Things like bending over to pick something up tends to make them worse for me. They are quite common. So, if you look at it that way, you are getting hit 2-3 times per day. That would be very consistent with CH. The rest of the time you are suffering shadows - which hurt. A lot of us take some caffeine for that part as well as a true hit. You can do energy drinks or coffee. Tea is not strong enough. Taurine in the Energy Drinks is thought to aid the caffeine in ditching the pain. But some, who can't take Energy Drinks, use coffee to great benefit. I too strongly recommend the D3 Regimen. All good for you vitamins that fight inflammation. It has been a major game changer for me and many others too. If I go off of it for more than two days, I will begin to get hit. So, yes, I am convinced it works. For me and many others too. And no doctor needed to do it. You do need to get up to date blood work. But, you can begin while waiting for that appointment. ATB

Glad to hear that. If you up your dose, do re-checks, okay? Unfortunately fatigue can get you with CH. It just wears you out! Like being in battle with your head for hours a day!!! Exhausting after a while.

Yes. Information is power over the beast we live with.

It lowers your blood pressure. That can be too much. What is your BP currently? 240 per day lowered mine to 80/60 at times. Needless to say, I quit taking it. I could not take enough to help. When it gets too low, I get very fatigued. A cycle will make you tired as it moves along. Especially if you get nocturnal hits. They keep you up at night and then you can become prone to getting a hit if you try to nap. The D3 Regimen is awesome! It helps many patients on this board. Some go pain free and others get lower intensity hits and slower ramp up times. Both are a huge help in controlling the pain.

It is hard on your guts. Many take a something for that. The symptoms you are experiencing are rather common. If it is giving you a headache, why take it at all? It is used for Hemacrania's, not clusters. Sometimes they give it to rule out hemicrania. Since you are having such a rough go of it and do not feel that it is helping, you might stop taking it and wait till you see the Neuro. Tell him about your experience! It is a very powerful NSAID and not to be used lightly. Especially if you will not benefit from it. And Pebbles is correct about it not helping Clusters - at all. Hang in there. Tomorrow is coming soon!

I am an Equinox person. Fall one in September - the 22nd or so. Never changed sides. At first they lasted a month or six weeks. Then it got to where they lasted till the Spring Equinox. And there was one year where I had surgery and the doctor was not at all helpful with the storm he stirred up in March. Not a Neuro and did not care. That one lasted eight months, not the normal six. Just keep in mind that they morph over time, They can change for the better or they can change for the worse. If you meant that they began in September rather than November, that fits a common profile. The Equinox. This mess can change sides and dates too. It just changes on us! I highly recommend the D3 Regimen!! It really helps a lot of CHer's.

CHF has all the great links for anyone here. He is great at providing that input to our members. The D3 can begin to work quickly for some. Like seeing results in the first week. Others can expect to have a reduction in about two weeks from what I have read here. The loading really gets your D up quick and that is what many need. It is known for stopping Ch for some and reducing the max pain level and slowing the ramp up for others. Most will take either with a big smile. Pain Free is the best of course. Take all your papers and push for your O2 even if you feel better now. Then you will be prepared if you need it again! ATB!

Well, if it is not safe, a lot of us are in trouble! Not covered by Medicare and often not Medicaid either. Other companies will attempt to deny it on occasion too. It is the expense. I believe that O2 toxicity was observed in ICU patients who were on O2 24/7. Big difference. So, you are not using it 24/7 and you do not have COPD that limits you. Let them know that primarily it is an issue of expense so far as insurance is concerned. The doctor will tell you it is safe, just hard to get approved! If it weren't safe, why would it be the primary abortive we use? Which is approved by regulatory agencies for this use. Which is the primary abortive according to the medical community. Sometimes, some people need 20 to 30 minutes until they get 'their' method down pat. Then it is down to 5-10 minutes.Our fighter pilots use it when they fly and that is over 15 minutes continuous use. And here is some food for thought. Premature infants who spent a lot of time in an incubator with super pure O2 went blind. Well, back in the 80's I think it was, they had a shortage of the super pure form for these babies. They had to use the 'regular' O2 used by the rest of the hospital. And the result? Those babies did not lose their sight. So, lesson learned there and eye sight of future infants was saved. You are not 'spamming' the board!

That is the 64K question. We are the same, but different too. For me, I wake up one morning and realize I had only three hits during the night, not the standard four. Then, one morning, I wake and realize I did not get hit at all. I do have some issues with continuing to wake at my standard 'hit' times for a week or more. But, they are painless awakenings. What dose of Verap are you taking now? Two or three times a day? Chers can go pretty high on that stuff. Your BP may be a limiting factor. Yes, that last day or two of Pred often finds the beast rising again. It sucks! Hopefully your Verap kicks in soon.