Jump to content
ClusterBusters
Sign in to follow this  
GoldEnBars

"Me, Myself, and My EYE"

Recommended Posts

I can remember being a teen some years ago when I first started to get these sharp pains in my right eye. Once the pain would emerge from the darkness, my body would weaken until I was laying down somewhere trying to get some sleep -- hoping I"d awake painless. Somehow, someway that seemed to work for me back then but, I was not always in the ideal situation in which laying down was an option. These random attacks of excruciating pain had no regards for my whereabouts when they decided to pay me a visit, they just seemed to appear unwarranted. I can recall them showing up while in class, while recording in the studio, while riding to some random destination, while conducting a group at work, while playing video games, while sitting in a movie theatre, while attending a function with friends, and even while playing pick up basketball at the neighborhood park. The majority of the time that these attacks would occur my only therapy/weapon was mind over matter. I had no insurance, i had no medication, I had not been diagnosed, and I had no idea of what was causing this traumatic experience to take place.  Therefore, I was left to fight the problem head on ( eye on my mind or mind on my eye -- either or the irony being; it was all in my head).  Luckily for myself, I am an episodic target -- one who was  randomly targeted by a pain so priceless that only 1 in 1,000 of us are actually indebted to it. The gift in this curse is that I am not a chronic sufferer, ( my deepest and dearest sympathies and condolences for all of you because i don't know how i'd manage). The curse is that I am paying a price for something that I do not want. Years and years had passed me bye and I'd gone on and off of this cluster coaster like an amusement park ride although, I could only find myself amused when I was as far away from the ride as possible. My cycles would last at least 3 months out of the year starting around September of every year. Strangely, while young i didn't pay any attention of how many i'd experience in a day because i didn't seem to care ...I knew it was a factor but, somehow it wasn't my focus -- I was to busy being overly consumed with being a teenager. Sex, drugs, and violence, had become my coping mechanisms  at that  point and the clusters were just pushed to the back of that line. At the age of seventeen my body took on a pain that would rival that of my cluster outbursts. This was the result of me being shot in my lower right thigh in a car jacking incident. The bullet bruised something in my right leg resulting in a paralyzed right foot for a year. Picture flailing your arms around and notice that you have no real control over your flapping hands. Well, that was my foot if i decided to shake my leg. Any way the painful result of the incident was severed nerves in my right leg and foot. I can still remember the day I was released from the hospital and I smoked some marijuana for the first time in a week. It felt as if I had ten to twenty different cluster headaches going on at the same time in my foot ( mainly my big toe ) and to top it off I got a cluster headache to go along with it. I can recall being provided with a heavy dose of Ibuprofen for the pain when I'd left the hospital but, it wasn't a factor for my foot nor my eye so, I didn't take it. Ok so lets fast forward to now. Well maybe I should tell you'll that I were diagnosed by a doctor at some point in my mid twenties... He questioned my symptoms and before I left he told me that I had cluster headaches. Then he provided me with information that I've never heard or read anywhere since that day. He told me that cluster headaches were a bunch of headaches all occurring in one place at the same time. Huh? I was sold, didn't know what else to think -- don't even know if I went home to do the research, i just took the info and ran with it. He also provided me with some type of steroid.  The steroids came in a small pack in which you probably took six the first day and each day after you'd take one less until you ended with one on your last day. Pretty sure you'll know what these steroid are; as of now I do not. So, between then and now I would come up my own remedies to help fight off an oncoming attack. The main thing I'd do still to this day is apply cold water to my face while leaning over a sink. This assists in relieving some pressure, and has assisted in stopping some oncoming attacks when caught in time. If at home when I feel an onslaught I can do my cold water theory and a set of twenty push ups and the pressure will go away sometimes. Last but not least, i can apply cold water and sit under or in front of a fan to get relief. Allowing my body to get as cold as I possibly -- can when under an attack or when one is coming -- either stops it or assists me in getting through one. These are the only ways that I have been able to cope in my 20 something years of being a sufferer. Sadly, at this point in my life I seem to focus more on the eye pain much more than I did when I was younger. It seems like I was in remission for the last year and a half but, that ended sometime last month. I've basically been confined to the house lately --  I haven't been to work since the 10th of this month. Strangely, the cowardly clusters are attacking me in my sleep more than ever now. 3 a.m. , 5 something a.m. , and 7 something a.m. is tearing me a new one. Doc has got me on Varapamil, naproxen, sumatriptan, and metoclopramide . None of these are doing me any justice right now so, they've been pushed to the side. Researching the net I stumbled across Vitamin D3, Omega 3 fish oil and Calcium Citrate. My calcium citrate also has magnesium in it. I've taken these suppliments today minus the prescriptions and Im getting through the day okay. Of course I've considered the cluster buster approach after reading and researching others stories and how its assisted them so, im here in hopes of breaking a cycle... If not venting my frustration is good as well because everyone needs a vent... Funny thing is that this is the first time in my life that I've been prescribed medication that's supposed to assist because its the 1st time I've had insurance. But still can't get two the neurologist because the Doc wants me on these meds that don't work for a month 1st... Yippie!!! Truly believe that the Neurologist will only prescribe more expensive drugs that won't work, or I won't be able to afford... SMH...Me,

Share this post


Link to post
Share on other sites

Hi,

sorry for you hearing such a bad story... 

where the hell is your OXYGEN? Probably the main abortive and very efective tool for many of us. You may also go into imitrex instead of sumatriptan. As cold water is giving some relife to you, Ergotamin may be the better choise. Check it out.

also I guess you do not take enough verapamil, people are used to take up to 1gr. per day which may be considered insane by your doc...

I'm pretty shure you'll get a lot of feedback and support from this portal and a great volume of relief, as most of us do so. Give it a Try

:)

Edited by urs
1mg should be 1gr

Share this post


Link to post
Share on other sites

GoldEnBars thanks for sharing your story, sorry you share the experiences of many of us. 

First off on the supplements you didn't say how much you were taking? Look into this:

http://www.vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people+

By a member here(Batch) that really knows what he's talking about. I stay on it at lower doses even when not in cycle and has helped with other inflammation issues. I also add turmeric curcumin(500 mg daily) to mine. 

Get your regular doctor to prescribe high flow oxygen to you why you wait for neurologist appointment. If he says no, ask why? It is safe and effective, so unless you have some type of respiratory condition call b.s. on him and get your own.

Yes your neurologist might just try to prescribe more medication to you, but it is still a good idea to see them just to rule out other possible health concerns. You also might luck out and get one that knows what he is talking about and/or is open minded. If you haven't started already, start a log so you have information to share with them and if something is not working for you. 

Share this post


Link to post
Share on other sites

Excellent advice from urs and amon.  As they say, OXYGEN, OXYGEN, OXYGEN.  I think urs meant to say "up to 1000mg/day" regarding the verapamil (or maybe he meant up to 1 gram)

I assume the metoclopramide that your doctor prescribed is to protect your gut from the naproxen.  Since the naproxen won't help anyway, I think you might consider dropping those two, unless the metoclopramide is for some other condition.

What form is the sumatriptan in -- pill; nasal spray; injection?

You could try melatonin at night, starting at about 9 mg and working up if necessary to find an effective and acceptable dosage.

You could try an energy shot, such as 5-Hour Energy, at the first sign of an attack. That works for many people to reduce or even abort an attack.  Several people have found that putting their feet in a bathtub with water that's as hot as they can stand will make an attack more tolerable.

Busting could well be the best thing for you, as it has been for so many, but unless you can get your hands on a busting substance right away and you've been off the sumatriptan for 5 days, you need something to get you by.  That something is primarily OXYGEN.

 

 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×