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New Here and Looking for Help (Read 1471 times)
TNBecca
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New Here and Looking for Help
Nov 9th, 2009 at 11:07pm
 
This is my first post here.  My name is Becca.  I had my first experience with cluster headaches when I was in college 13 years ago.   My roommate at the time kept trying to make me quit smacking my head with the heel of my hand and lay down because she thought it was a migraine.  I've had sporadic bouts of cluster headaches with cycles of migraines with aura and lots of neurological symptoms in between.

A few weeks ago I began cycling through migraines again--aura, facial numbness, loss of balance, etc.  Today the first cluster headache hit.  I was fine and then the next thing I knew it felt like someone stuck an ice pick in the left side of my forehead, my eye started watering and my nose started running.  The pain was so bad it would have brought me to my knees had I been standing.  All I could do was press the heel of my hand against my forehead as hard as I could, rock, and make a point of not screaming like I felt like doing because my two year old and five year old were standing there.  I know at about 5:00 tomorrow afternoon--while I am in a graduate class-- it will hit again.  As I told my husband today--if a gun had been nearby I would have shot myself when the pain hit. 

I don't want to do this again.  I don't want to end up back at the neurologist, on Topamax and having to get a MRI done.   I just don't.   Can anyone suggest anything I can do in terms of diet, exercise, etc. that will help?   

Excuse me if I'm whining but this is a part of my life I never, ever, ever wanted to revisit.   Cry
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Joni
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Re: New Here and Looking for Help
Reply #1 - Nov 10th, 2009 at 12:21am
 
TNBecca wrote on Nov 9th, 2009 at 11:07pm:
This is my first post here.  My name is Becca.  I had my first experience with cluster headaches when I was in college 13 years ago.   My roommate at the time kept trying to make me quit smacking my head with the heel of my hand and lay down because she thought it was a migraine.  I've had sporadic bouts of cluster headaches with cycles of migraines with aura and lots of neurological symptoms in between.

A few weeks ago I began cycling through migraines again--aura, facial numbness, loss of balance, etc.  Today the first cluster headache hit.  I was fine and then the next thing I knew it felt like someone stuck an ice pick in the left side of my forehead, my eye started watering and my nose started running.  The pain was so bad it would have brought me to my knees had I been standing.  All I could do was press the heel of my hand against my forehead as hard as I could, rock, and make a point of not screaming like I felt like doing because my two year old and five year old were standing there.  I know at about 5:00 tomorrow afternoon--while I am in a graduate class-- it will hit again.  As I told my husband today--if a gun had been nearby I would have shot myself when the pain hit. 

I don't want to do this again.  I don't want to end up back at the neurologist, on Topamax and having to get a MRI done.   I just don't.   Can anyone suggest anything I can do in terms of diet, exercise, etc. that will help?   

Excuse me if I'm whining but this is a part of my life I never, ever, ever wanted to revisit.   Cry


Hi Becca-
I am sorry you are having to revisit this again, but the truth is that if you do have cluster headaches, it was probably inevitable. 

Some questions...Have you been pain free for 13 years?  Have you been diagnosed with Migraines AND Clusters?  What do you mean by cycling through Migraines?  I don't understand your Migraine comments, but your cluster comments sound familiar. 

If you have been diagnosed with cluster headaches, you will need a neurologist.  I agree with you on the Topamax because I don't like it either.  Thankfully, there are many other choices, but you will need something!  Read, read, read here to get ideas.  Scan the topics and click on them as well as checking out the list to the left of your screen.  People here will help and support you, but you must get to a doctor as well and educate yourself because if it is Clusters, it is not likely a short term problem...I have had them for 25 years.  But I am okay and they do not define me and you will be okay, too.

A good diet and exercise program is good for us all, but it is not a cure for Cluster Headaches as there is no cure at this time.  I take Verapamil and to abort...I take Zyprexa, but as you will see, there are many ways to skin a cat.  Others will be along to give you some tips and support.

No problem on the whining.  It is so discouraging when you begin a new cycle and it is good to just let it out.  We all know what you mean!  Get to a neurologist!

Good luck!
Joni
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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bejeeber
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Re: New Here and Looking for Help
Reply #2 - Nov 10th, 2009 at 12:29am
 
Oh there's a ton of stuff (including drugless ) you can find out about here for fighting this beast back.

As far as diet and exercise are concerned, yeah those'll work great for avoiding the top killer diseases but pretty much aren't going to do jack squat for you right now as you start this CH episode. That part is just my opinion.

Soooo...how about starting with the latest approach to using O2 to abort headaches? No drugs involved there and there are now legions of cluster heads here who swear by it. The site here unfortunately presents a technical glitch for some visitors - I'm going to provide a link to the oxygen info, since the link may or may not already be showing up in your left hand view, arbitrarily depending on how you navigated here:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

For other natural remedies, some folks report encouraging results with melatonin, the herb Kudzu, and amino acid taurine.

Others feel they have knocked episodes out entirely with mother nature's own Rivea Corymboa seeds.

Personally, I still find myself needing to rely a bit on meds (imitrex for the big hits that nothing else will touch, Neurontin as a preventative to lessen the frequency of hits), but hey I like to just go ahead and abort 100% of my CH hits, and I have done just that for 2 out my last 3 episodes.

PS - Glad you're not into just blindly following what some neurologist tells you to do for this go 'round. You have to go into your appointment well informed because someone in the room has to be.




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« Last Edit: Nov 10th, 2009 at 11:46am by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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TNBecca
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Re: New Here and Looking for Help
Reply #3 - Nov 10th, 2009 at 8:23am
 


Some questions...Have you been pain free for 13 years?  Have you been diagnosed with Migraines AND Clusters?  What do you mean by cycling through Migraines?  I don't understand your Migraine comments, but your cluster comments sound familiar. 

Thanks for your response.   No, unfortunately, I haven't been pain free for the past 13 years.  The cluster headaches have been acute for me rather than chronic.  The last bad bout was a couple of years ago.   At that point they were waking me up in the middle of the night.  I say cycling through migraines because instead of getting one here and one there they tend to come every day for a period of time, go away and then come back.   "Cycling" was the term the neurologist I was seeing used.

I was officially diagnosed with clusters about 5 and a half years ago after my oldest daughter was born.   I had been told before then that I was getting them but the doctor at the student health center was a quack so I took it with a grain of salt.  At the time I was diagnosed I thought I was getting horrible sinus headaches because I have really bad allergies.  The doctor questioned me and told me that sinus headaches don't lay you out like that or show up at the same time every day.   He was the first to tell me to get on Topamax.  The last time I took Topamax I had a really hard time with it once the dosage got the point it needed to be (I want to say it was something like 1500 mg) because I started getting a lot of pain in hands and feet.

I do have a couple of other questions.  First, how many of you also get migraines, particularly with aura and neurological symptoms (slurred speech, loss of balance, confusion, etc)?    Second, how many of you have bad allergies?   Third, do any of you find you have some degree of residual headache for several hours after being hit with a cluster headache?  I don't mean that want to bang your head against the wall pain but pain that just kinda lingers.

Becca
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lorac
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Re: New Here and Looking for Help
Reply #4 - Nov 10th, 2009 at 9:01am
 
Becca...welcome.
   Sorry you have to be here, but glad you found us.
Have you tried the Oxygen route yet.  It works, without all the nasty side effects.

   Don't just go along hoping for the best....take action girl...there is no need to suffer more than you need to. Especially with little ones to care for! Wink

     Do a bunch of reading in here, and you will find all your answers.  I think there are many who also have the migraine here too, and they will likely be along soon.

  I see a TN in front of your name,,,,are you in Tennessee.?   I am. that's why I wondered.
                             hang around, we'll be here, no matter how much you beat yourself in the head Grin

        I do that too.               Lorac
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Joni
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Re: New Here and Looking for Help
Reply #5 - Nov 10th, 2009 at 1:40pm
 
Becca-
Yes, I sometimes have a mild headache including my ear, eye, and neck between headaches especially in the middle of my cycle.  From time to time, I also feel dizzy, have facial numbness, feel almost slurred in speech, feel disoriented, and slightly unbalanced.  I don't know to what extent your symptoms are, but mine are just enough to make me wonder about them and then they disappear for awhile before returning which comforts me.  For these particular symptoms, I go to my chiropractor and it helps some, but she is great.

Hope this helps,
Joni
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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RichardN
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Re: New Here and Looking for Help
Reply #6 - Nov 10th, 2009 at 2:58pm
 
Hi Becca

  Sorry the beast is at your door . . . but you've come to the right place.

  I'm in Tennessee also (Crossville) . .  chronic since 1/01 . . . . by the time my wife found this site for me 2/02, was having 6-8 attacks daily, sometimes 3-5 at night, Kip 5-9s, most 20-40 min. long and the occasional 1 1/2 -  2 hr+ horror. . . . was a basket case, exhausted, afraid of sleep, always afraid of the next one (how soon will it come, how bad will it be, how long will it last?).  This place gave me the info/ammunition to finally have some control over this beast of ours.

  You need a preventative and abortive.  Verapamil worked for me and I had my first PF day in over a year within 3 weeks of copying the info off this site and taking to my doc (had three attacks that night, but had 02 to kill them).  Verapamil is a taper drug . . . the doc will increase the dosage until it reaches effectiveness . . . it is a blood pressure med, so your BP needs to be monitored.  I didn't get the PF day til I reached 240mg . . .got as high as 480mg, then reduced to a 360mg maintenance dose . . .  many take much larger doses and sometimes combined with other drugs like lithium.

  Oxygen is a MUST!  It works for 70%+ to abort an attack.  If used early-on in the attack, I can kill the beast in 5-10 minutes . . . been going through a lot of tanks ("E" tanks . . . $10 ea . . ) lately.  It's cheap if insurance won't pay for it.

  Imitrex injectibles work in minutes . . . the pills take too long to take effect . . . inhalers quicker, but take several minutes more to work . . . I can't use any form of Imitrex due to some artery blockage and high cholesterol . . . VERY dangerous for me. . . so 02 is my only abortive . . . a real miracle for us.  I think most here abort most of their attacks with 02, and save the trex for the attacks the 02 doesn't reach.

  Please read the "water X 3" link on the left.  The last four years or so, that has been my preventative.  I stopped the Verap because my BP got uncomfortably low.  Other medical conditions made it mandatory to consume large quantities of water . . . attacks reduced in frequency and intensity . . . and of course I always have 02 handy to use quickly.  IT IS NOT EASY TO DO!  . . .  a sharp reduction in water intake will usually set off a series of attacks for me.

  If you haven't already, identify your triggers.  For me, alcohol in any form, exhaust fumes, certain chemical odors like carb cleaner of other solvent type solutions.

  Start keeping a journal of your attacks.  Note the time, duration, intensity (use the Kip scale . . link on left) and take your journal and a copy of the Kip scale with you when next you see your doc . . .and don't for get to take the info to aid in getting an 02 script.

  You have much reading to do and many questions to ask . . . fire away.  The info/caring/sharing you will get here comes from folks who truly know your pain. 

   Be  Safe,     PFDANs

     Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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