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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › yeah, this sucks :-(

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yeah, this sucks :-( (Read 1876 times)

indridcold

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yeah, this sucks :-(
Feb 14^th, 2013 at 9:28pm

so, I guess I have clusters.

I've been to urgent care, the ER, and my PCP, and along with consultation with a neurologist (only by the last two) have I been given an idea of what's wrong with me.

It's been going on for a week, started with sudden headache, my eyelid drooped, pupil in that eye is small, stuffy nose, feel like I literally got bashed by a 2x4 to the side of the head.

SO, that was today I was "diagnosed", but, I still have to get some more MRI and MRA done.

The oxygen helped at the docs office

I have a bunch of imitrex injections that I don't know how i'll be able to jab myself, and prednisone rx'd today. They gave me Toradol and zofran shots in the butt, which did nothing..

I'm so depressed, I feel like I'm going to end up losing my job over this, now will have huge medical bills, and with missing work, that works perfect.

I have two young kids (7 months and 2 years), and I can do nothing with them lately, I can't get anything done or even think straight.

I honestly feel like this is it, and the scary part was in my morning head smash, I started thinking some not so good thoughts Cry

hope I can find help and beat this, I'm really, really worried, on top of the crushing pain...

hope you guys can help me, forums are always the go to for me.

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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: yeah, this sucks :-(
Reply #1 - Feb 14^th, 2013 at 10:00pm

Hi and welcome

Getting a diagnosis from a neurologist just a week after starting is about the quickest I've seen happen for anyone. Many people have a wait of several years, so you're on to a good start, especially with a PCP and neuro who know about CHs.

Whilst the oxygen helped at the office, getting it for use at home or out and about will be a life changer. When used at a high flow rate (15lpm or higher) and with a non-rebreather mask, you'll be able to kill your CHs in a few minutes. Read up about using it at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

.

The prednisione should start to prevent your CHs in a day or so, however you can only use it short term, normally in a taper dose starting at about 60 or 80mg a day and then dropping off to nothing over about 10 days. This is normally used to give some relief while you start on a longer term preventive, like verapamil, lithium or topomax. If you've not been given something like this, find out why not.

Another good preventive which a lot of us have been getting good success with is vitamin D3. Read about it at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

. This has helped me be pain free for over a year and many others too.

Keep reading and you'll learn an incredible amount.

Also ask away with any questions, everyone here either gets CH or supports someone with it, so we can help.

And do update your profile with where you are in the world. Some information is country specific, so people can give you local information.

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djphrenzy

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Re: yeah, this sucks :-(
Reply #2 - Feb 14^th, 2013 at 10:01pm

The experts will be along soon with a metric ton of reading material and useful information, but I'll tell you the first week is the hardest, brother. It may not seem like it right now, but this IS a manageable condition. You gotta pull it together and take control of the situation, especially with two little ones in tow.

Step 1. Get a prescription for home Oxygen. The experts will be along soon with the details. There's a small learning curve involved, but stick with it. Once you get the hang of it you'll be able to knock down attacks before they go anywhere.

Step 2. Get a good prevent. My choice is Verapamil. Dosages vary widely. Anywhere from 240mg/day to 960mg/day.

Step 3. Keep energy drinks on hand. I prefer Monster Khaos but anything with Caffeine and Taurine works. Chug this just before starting the Oxygen. (If you take Verapamil, limit yourself to one drink a day).

Energy drinks help even if you don't have Oxygen or a Prevent going yet. They usually won't kill an attack completely, but it'll take it down a couple valuable notches. You can do this right now.

Step 4. Check out Batch's D3 Regimen. Again, the experts will be along shortly with details.

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: yeah, this sucks :-( Reply #3 - Feb 14^th, 2013 at 11:57pm Just as importantly, Indrid, there are shoulders here to lean on. There are shoulders here to cry on. We've all been where you are now so there's no need to explain. We truly understand. Just as we'll truly help you every inch of the way. Welcome home.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

wimsey1

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Re: yeah, this sucks :-(
Reply #4 - Feb 15^th, 2013 at 8:23am

Quote:

I honestly feel like this is it, and the scary part was in my morning head smash, I started thinking some not so good thoughts

As has been said, there is help, and there can be a learning curve on using your abortives correctly and efficiently. The O2 you heard about. Get a home setup as quickly as you can. It's the bestest for dealing with those attacks. And they are portable as well.

What kind of injectable were you given? If it is the autoinject, it's simple. I inject in my calf, it's just easier for me to do so. But you can inject anywhere. Some use a roll of skin (fat?) from the belly. Doesn't matter. Prime it up and nail the beast quickly.

And those thoughts are understandable, but not helpful. They can keep you from finding the right treatments as you dither about wanting to live or die. When the pain floods our every thought, all that exists is the pain. And we want the pain to stop. That's where the abortives come in. They give us hope, and here, we are all about hope.

Since forums are you "go to," you have found the best (along with our sister forum clusterbusters) so you are in the right place. Talk to us! Ask questions. And read everything. It will empower you. God bless. lance

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Ken_DFA

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Re: yeah, this sucks :-(
Reply #5 - Feb 15^th, 2013 at 10:43am

Indrid,

No one has mentioned triggers yet, so allow me to be the first.

Most people have certain foods, environmental conditions and behaviors that will trigger cluster headaches. Avoiding these triggers is essential.

Common triggers include (and there is a whole separate thread dedicated to this topic):
- alcohol in any shape or form
- certain types of food
- disruptions in sleep pattern
- disruptions in blood sugar levels
- stress

You should start keeping a diary that records the time, duration and severity of your headaches as well as a short description of what you were doing prior to the attack. Aggregated over time, this information becomes invaluable.

-Ken

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djphrenzy CH.com Junior Offline I Love CH.com! Posts: 93	Re: yeah, this sucks :-( Reply #6 - Feb 15^th, 2013 at 10:59am My triggers are: alcohol cheese/dairy cigarette smoke chocolate anything with lots of preservatives MSG On the plus side, my diet usually improves significantly when I am in cycle.
Back to top	« Last Edit: Feb 15^th, 2013 at 11:00am by djphrenzy » IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: yeah, this sucks :-( Reply #7 - Feb 16^th, 2013 at 1:43pm *On the plus side, my diet usually improves significantly when I am in cycle* Funny how that works with us!!! Joe
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ndhillst

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Re: yeah, this sucks :-(
Reply #8 - Feb 27^th, 2013 at 10:40pm

Even smelling alcohol is a trigger for me. I'm not sure of any others.

O2 is great at aborting an attack.

I know it can seem hopeless (it took me more than a month to get a diagnosis and another 3 to find a treatment) but never give up hope. I'd recommend starting a solid vitamin regimine (there are posted here, I use the Fish oil/D2/calcium/zinc/vit k/magnesium regime). It has helped many sufferers.

Don't give up, you aren't alone. I share your fears - the out of pocket for the drugs and doctors is adding up, and I've been on medical leave now for almost 4 months so my job is at some risk. The good news is I now have something that works (Depakote and Verapamil) and am returning to work next week. Read through the posts here for ideas and possible therapies so that you don't rely totally on your neurologist - it will speed up the process of finding something that works.

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