New Here On third Cycle This year

[Jennygriffbc]

Hello All,

 

My name is Jennifer. I am one of the few woman that is unlucky enough to suffer from cluster headaches. I am a lifetime migraine sufferer. They started to be manageable with imitrex and then IT happened. The worst pain of my life. I don't have to describe to any of you how I thought I was dying. I quickly realized this is not a migraine this is a whole other level. I had my husband rush me to the hospital thinking I had a tumor or aneurism for sure. I was scared really really how are my boys going to live without me scared.

 

At Stonybrook hospital they put me on oxygen which helped a bit. They did a cat scan and mri within the next two weeks and deemed it cluster. They put me on Verapamil and sent me on my way. It did not help me at all. I didn't understand at first about the characteristics of clusters and I was not sleeping at night so I would try to nap and have more. I was a wreck having constant clusters, no sleep and just a mess. I lost ten pounds in two weeks.

 

I found a great neurologist who tried Elevil which is an antidepressant and it made me weepy because I am the opposite of a depressed person. I am happy and optimistic by nature. Boy have cluster headaches tested that theory lately though.

 

I went three years cluster free. I was thinking that this horror was behind me until I moved to Florida. I cycled in for over a month had three weeks off, got a sinus infection and cycled back in. During that time I have tried topomax, propranonol (probably not spelled correctly), verapamil again, steroid shots (which made me have temporary hair loss) and botox.. Other than having a wrinkle free forehead nothing has worked. The Topomax did actually work but it made me feel really weird. I don't like not feeling like myself.

 

It appears that you are all doing some sort of oxygen treatment. It looks like I should look into that. I have tried oxygen in regular doses and it doesn't really help. Have any of you had any luck with a hyperbaric chamber? My new neurologist uses one.

 

Speaking of my new neurologist., (my last one was a real jerk,) he does seem to think outside of the box which I love. He just gave me a litacaine treatment with a catheter up my nostril. Unfortunately tilting my head back made my left aka bad side hurt more. He does think outside the  box and I do appreciate that though. Please let me know what drugs do work. I have never tried prednisone or cluster. He is starting me on Zomig I think next.

 

I have to say that I am happy this message board is available. People have no idea what we go through at night and then we wake up, pull ourselves together and put a smile on our faces. I feel like I am being tortured what I call the night stalker. I am fine all day most days and as soon as I go to sleep I wake up in hell. I have been taking imitrex and melatonin every night to sleep for months and I know I cant keep going on this way. I am the sickest feeling healthy person I know. I can't even think about touching alcohol. I look at all of those carefree people at the tiki bars sipping their cocktails and enjoying life and think why can't I just feel normal. I sure used to.

 

Jennifer

[CHfather]

Jennifer, you really need high-flow oxygen (at least 15 lpm, often more) and a high-quality non-rebreather mask.  It is very, very often prescribed wrong.  If you have CH, a system like this is almost guaranteed to help you.  Read more about O2 here: https://clusterbusters.org/oxygen-information/  The mask that makes a big difference is now called the Cluster O2 Kit: http://www.clusterheadaches.com/ccp8/index.php?app=cms&ns=display&ref=splash

 

Hyperbaric oxygen can help abort an attack, but it hasn't shown any effectiveness as a preventive.  An optimized "regular" O2 system is what you want.

 

There nothing really "out of the box" about that lidocaine treatment.  Lots of people try it. It's called an occipital nerver block, or ONB.  I don't think it helps more than 10% of CH patients, from what I've seen.

 

The medical standard for pharmaceutical treatment of CH is verapamil as a preventive, and oxygen and sumatriptan (Imitrex) as abortives.  Sumatriptan injections are the most effective form -- it also comes as a nasal spray (often effective) and pills (rarely if ever effective). Taking imitrex pills at night is not going to help much, if at all.  Zomig is the nasal spray version of the triptan.  Like I said, it's much, much better than the useless pills -- highly effective for many people. 

 

Topamax can be effective as a preventive, but as you've seen, the side effects are yucky.  I don't know what your verapamil dose was. Many people need a pretty high dose to be effective.  There are side effects there also, which need to be monitored. 

You should start the vitamin D3 regimen right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/  It just might be the most effective preventive there is, not to mention that it generally has no side effects (and is actually good for you, in almost all cases).

 

You mention "steroid shots."  Usually steroids (such as prednisone) are given in pill form, as a "taper."  They can buy you some pain-free time, but are rarely lastingly effective.

 

How much melatonin are you taking at night?  There are people here who go up close to 30mg before it helps them get relief.

 

Have you tried energy shots, such as 5-Hour Energy, at the first sign of an attack? They can abort an attack, or at least significantly reduce the severity of the attack (even in the middle of the night -- they don't keep most people up).

 

 

 

Most people who are regulars here use the "busting" method -- taking small amounts of psychedelic substances in a systematic way. Often the amount can be small enough that there are no, or very few, "trip" effects.  You can read about that in the numbered files in the ClusterBuster Files section.

[sierra]

Hi Jen, CHfather is one of the most knowledgeable, experienced people you will find when it comes to CH. Right now you need to think about the difference between aborting an attack and then preventing one. Your first priority should be to get oxygen now. Please read up on the attachments from CHfather....get the mask first then focus on the oxygen. Every area/doctor is a little different, some of us have trouble getting medical oxygen and just use welding oxygen. Once you have it you have to practice your breathing technique .....read the files and watch the videos. Oxygen is used to abort an attack, it will not prevent one. When used properly it can abort an attack within 10 minutes without side effects. Some of us have developed breathing techniques that can abort even quicker.

 

Do not waste your time with immitrex/sumatriptan pills or sprays, the injectable sumatriptan is a good abortive but leaves you feeling really lousy afterward and can only be used twice a day.

 

I am a little harder on the medical community than most here. I went through 5 different neuro's and only one provided temporary relief. Most of them have limited knowledge of CH and keep throwing hand me down drugs developed for other purposes at you while you continue to suffer.

 

Ask questions, there are plenty of good folks here who will help you. This is a damned awful disease that must be brought under control and closely managed if you want your life back.

 

Please get oxygen ASAP then come back to us with questions.....keep reading the files here you will learn a lot.

[CHfather]

sierra's post is really helpful, I would only disagree slightly to say that some people get good results from the Zomig spray, and it might be a sensible place to start if only because the injections are so expensive and you can get so few injectors at a time.  you can split the injectors so that you can get more than two injections a day . . . but really, if you have an effective oxygen system you will almost certainly not be needing so many injections

[CHfather]

sierra, are you splitting trex injections (if you're still using it)?  2 mg (out of the 6mg in the autoinjector) is enough for most people.  most people have the newer type of injector that's covered in the video at the bottom of this post: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ this type is a pain to get open at first, but once you learn how to do it, it's not so bad.  highly recommended.

[sierra]

CHF, thanks for the correction....I understand that the spray works for some people. I just tend to have a short fuse when it comes to the medical community not advising patients on the proper use of oxygen. Trex is a love/hate thing with me, I still keep some around and always take it with me when I travel in case of an emergency. However, before I found this site trex was my only weapon. When you are getting hit 5 times or more in a day it's like an addiction. I learned how to split the injectors and experimented with the dose. In my case, anything less than half (3mg) would not abort for me.

 

Thanks to you and your excellent white paper on oxygen I learned how to get away from trex. I eventually learned how to bust trying different methods. I recently got lazy in my management of CH and got caught without any busting material, I felt like a newbie struggling to get things under control. I am back in remission and trying to learn from folks here like you how to help others who have just discovered the site.

 

I think the toughest thing for a new visitor to get over is that they will find better help and advice here than they can get from the average neuro, sad but true. They may all be 'doctors' but somebody graduated last......we just don't know who.

 

I will be forever in the debt of the founders and moderators of this site who have taught me how to manage this awful disease.