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RiosCCRN

My sister, I"m helpless

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Hello, 

I found this by researching cluster headaches. For three years now in cycles my sister has suffered from the craziest headache symptom that comes on by slowly moving up the back of her neck on one side, then over the ear and finally hitting the side of her face. Always same side. When it's over, it recedes the same way it started. Sometimes she has mild facial drooping on the same side after it recedes. Afterwards it's like someone hit her in that side of her face with a wrench. During the attack she is hyper sensitive to touch, cold, the slightest wind against her face...  It's a pain so excruciating she can't describe it other than needles being slowly ground forward through her bone etc. We are both nurses. I am a critical care rn and she is a tele rn.

I've always been in critical care and we initially hit it hard with diagnostics. MRI, CT, Xray.. nothing. Her neurologist finally said she has cluster headaches. She gets nerve blocks done now and now they do nothing. The headaches are coming in faster periods now and longer duration. They used to be 10-15 and now they can be anywhere from 30 to 60 min long of the severe pain stage. I"m terrified for her mental health and dying inside watching her suffer because I can't help. I can't even imagine how bad it is for her, and she's what's important here. Many times they hit 20 or so min after she just falls asleep. 

I'm going to read through the forum to find anything I can, that we haven't tried. Every site I've hit so far has suggested compressed oxygen inhaled with a non rebreather mask at the start of an acute attack coming on. We have not ever been offered that. Have any of you been able to stop the attack that way? 

She gets swelling in the cervical vertebrae area and the occipital area of the same side as attack. I finally got her to go see chiropractor with the blessing of her neurologist, because I thought maybe the nerve was pinched and inflamed in the cervical collar. She does have very bad cervical curvature and most likely nerve involvement the doctor thinks. Have any of you stopped your CH or symptoms with chiropractic help? 

I'm sorry this is so scattered. We've covered so much in three years, I don't even know what to start with. I'm desperate to help her. I work nights on a Covid unit currently. She does as well. I will check here frequently to respond to any questions anyone may pose or information given. 

thank you for even taking the time to read this. Please help me help her. 

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Sorry you and your sister are dealing with this but you are in a good place for help. I see you have done all the ct, mri type scans to rule out anything else and that is a good start. The oxygen is the number one abort by most for cluster attacks. You will want the cluster mask and a regulator that has a flow rate that will go up to 15 or 20 lpm. you can read all about this. energy drinks or strong coffee are also used to help at the onset of an attack to help slow the ramp up time so you can get to the oxygen. Read up on the vitamine D3 regimen developed by a member on thie that goes by the name of XXX also known as Batch. Does she or has she tried Verapamil Sumatriptan or any other medications for this? Please read up as much as you can and ask a tun of questions you will get better help on this site then you will in any doctors office. 

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Hey welcome to the forum

im sorry you have to be here. It’s great that your sister has support with her. It’s sometimes just as hard for loved ones seeing their loved ones suffer. My boyfriend has said he wished he could take these from me. It’s mentally and physically draining. The good news is..you found cluster busters!! 

The help that I have gotten from the people on this site is something I can’t even put into words. I have been to countless neurologists and tried every medication under the sun. Cluster headaches are much harder at the beginning when you first get a diagnosis and are dealing with them. You are confused and frustrated that this is even happening to you. Especially when you read online that mostly men suffer! I think by now more women are getting this as well. At least from what I’ve seen. Once you learn how to live with them, it gets somewhat easier. 

I recommend starting with the d3 regimen. 

That’s the link directly from the cluster busters files site. I’ve been on it for a year. You need to follow the instructions very carefully. This is something you can get started on right away. I highly recommend it. You can also speak to your doctor about trying verapamil immediate release pills. It is a calcium channel blocker that helps people prevent CH cycles or lessen the intensity. 

The best abortive is going to be an oxygen tank. There is tons of info on here about the tanks, sizes, etc. I would look into that immediately. Energy drinks can be effective for shadows or even lessen the intensity of the hits you get, if taken right away. I drink ginger tea a lot. It helps with those annoying shadow headaches that linger all day. 

Lastly there is busting, if that is an option for your sister. You can read up on that as well on the “new users read here” banner. 

Everyone has been in your sisters position at some point, she isn’t alone. It’s very important that she understands that. It really helps with mentally coping. I am a cluster newbie myself. I have so much respect for everyone on this site. Best of luck, keep us posted. 

Kat

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Here's an overview of CH treatments. It also has a link to the D3 regimen.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

I'm not completely certain that what she has is CH, but you might as well try the recommended treatments and see what happens.  Maybe it won't be too hard for her to get her hands on a cylinder of O2 with a non-rebreather mask and a regulator that goes up to at least 15 lpm?  (She could try 12lpm if that's all that's available.)  

Thank you for being there for your sister!

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OXYGEN...OXYGEN...OXYGEN.....life changing/sanity saving....and since she in a hospital setting the opportunity is there to try w/o going thru all the hoops most of us do...

.....15-25+ lpm at first sign of hit, make sure only O2 (no room air, plug any mask holes), energy drink/caffeine first and quickly improves efficacy for many, stay on for 5-10 min after hit subsides, try various breathing techniques: hyperventilation, breath and hold, slow deep breathing ...or a variation. we each find our own "style" that works best...

....and find a headache specialist....she is being poorly served

best

jonathan

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Hi Rios! I see that you have gotten some great advice already!

Has she tried Prednisone? Like a 5 day taper pack? It will kill the CH while she is on it. Not good for long term, but great to give her a much needed break. While on that, she could be starting with the Verapamil short acting and let it get to work. As you know, any physician can prescribe those for her in the short term. It would be a start. Verap should be titered up with checks for blood pressure and heart monitoring to perhaps.

She is having a lot of Trigeminal  Neuralgia Symptoms I see. When mine gets fired up, warm heat really helps a lot. I would hold my face over a heat source and be soothed enough to lie down after a while. I don't want anything to touch it either! Cold made it worse. Those were the early days of my trip down this path. I slept on my back on the sofa to prevent rolling over on it and setting off another attack.

While not the most common form of CH, some of us get hit thru the temple area the hardest. Mine feels like a hot railroad spike is being driven thru my temple and into the nerve of my eye. It feels light lightening strikes crawling further and further across your face as the branches light up. I try to 'push' it back by lightly stroking the ends of the tentacles that are invading my face with a screaming hot nerve pain. Then, it reaches the point where you cannot touch any of it and just rock in agony, praying for that damn octopus to move back where it came from. It leaves the whole area sore. And leaves you exhausted after. 

Even if her symptoms are not the most prevalent type, it likely is CH. Just a variant. They might want to treat her for the neuralgia first, but I suspect that it is not at the bottom of the problem. Perhaps that is why the shots are not working. And getting hit right after falling asleep is classic!!!

Hugs to you both and many thanks for being her supporter!! We love our supporters! :wub: 

And thank you both for working in the COVID conditions!! My heart goes out to you. 

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High flow o2 at onset.  Sumatriptan injections when that doesn’t work. Hot shower directed at my head.  I’ve been having success with micro dosing.  I wouldn’t  wish this on anyone and I’m sorry it is happening 

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HI Rios,

I had clusters for about 4 years before I signed up here. Like your sister, I had tried everything doctors could give me. The last doctor med I was on made them worse (Topiramate, nasty stuff). At the time I came here, I was having 2-5 attacks every 2-3 days for nearly a year. I was actually, and quite literally, picking a date in my calendar to exit planet Earth. I'd decided to give myself 1 more year to find a solution, and that's when I remembered once being told about this site. 

I spent the following 6 weeks doing two things: 1, weened myself off Topiramate, and 2, read everything I could on this site. I think I read the key files in the Files section 4 or 5 times. I asked questions and made friends. 

It took some work, and wasn't an overnight fix. After my first bust the post traumatic stress attacks stopped. They just completely went away. The year prior to using these methods I had had 257 cluster attacks. The following year that dropped to 169. That's still a big number, but was much, much better. Last year, I had a whopping 37 attacks, all but three of those lasted less than five minutes. 

There is hope. There are solutions. You have to be your own doctor, researcher and test patient, but you can make these better. The Vitamin D3 regimen is a good place to start, along with a deep dive into the File section.

We are here to help.

Mox

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PS.

I often think these headaches are equally difficult on those that care about us. My best friend used to get so frustrated watching me in pain and unable to help. We eventually agreed that when the cluster started, she'd just leave me alone and get one with it. But, as it ended, I would always want 2-3 glasses of cold water and a blanket or bathrobe, and she'd always have these ready. 

Mox

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