I know all our heads feel like that but my head always feels that or like it has just exploded or will just explode any minute. Has anybody out there failed to respond to pretty much everything that has been thrown at them and yes I am seeing a neurologist that specialises in cluster headaches and he has even drafted in a colleague I am still waiting for botox but not really too willing to do it. I have tried the 123 Batch thing and followed it religiously nothing yet and it's been 3 weeks, my nose is killing my from the oxygen that I am guzzling in an attempt to survive. Right now I'm on Topamax and Imigan injections it just about stops me going mad

Anyone else out there had a similar experience?

I have been through all the usual meds and none of them work. I have chronic cluster all day every day coupled with chronic daily migraine I am just a walking headache at this stage

Cailin

Hi Cailin,

Quote:

Has anybody out there failed to respond to pretty much everything that has been thrown at them

Yes,your not alone. My heads exploding is part of the wonderful expierence. :D Try to keep your attitude from sinking, it's tough but you are stronger than you think. Wished I could help more..but my heads exploding.....lol  Are you aware of the alternative medications available....clusterbusters.com It may be an option considering nothing traditional is working. Hang tough dammit. [smiley=bath.gif] Had botox injections...hey something else to try. No action yet...cept I look 20 again. :D
all the best
the bb

Hiya! 

Welcome to the club ...

I have been walking around in a haze just shy of two months now.  It goes anywhere from a 1 to a 10 back to a 1.  I'm sure you can relate! 

I've tried many medications and OTC remedies, some with minimal luck, others with ZERO luck.  Then I found this site.  So now, I'm trying things on here ... If they work, SUPER!  If not, well, I'm not any worse off than I am now. 

It gets hard, the depression and lonliness is the worst.  Crying because life outside the 4 walls of your home still carries on with or without you is the hardest for me.  I've missed birthday parties, holidays and even spent a vacation in the hospital because I couldn't stop vomiting from the pain.  I just wanted to go home, but driving 12 hours home was out of the question.  So I had to stick out a miserable week! 

I like to buy myself flowers when I go to the grocery store.  Or buy myself something good to eat ... just for myself.  It's the little things that we need to get us through the day.  I'm not talking about spending a ton of money every day .... just take time to smell the roses!  Tomorrow is another day and we'll have to find something else to get us through that day too. 

It's the little things ... one day you will get there too.  You'll find something that gives you relief! 

I wish you the best!
-Melissa

Quote:

I have chronic cluster all day every day...

"All day every day" sure doesn't sound like CH to me. Have you had an MRI of your head to rule out anything more nefarious?

If you do, indeed, have CH syndrome, and you've had enough of doctors throwing everything they know at it with little to no result, go here:

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and

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They're turning some heads and saving some lives. They saved mine.

Some of what I am about to write is unrelated to anyone else in particular, but not the end result. That is pretty much on point.

In November '11 I was in a car accident. Rear ended. Up until that moment, the beast was under control. Got hit at most 1 or 2 times a day, often with days offf, and seldom during REM. After the accident, well...it's been a party for the beast. Back to every day, 2-6 times a day, with 2 or 3 during REM. I've been going to PT for a sore neck hoping that would help bring the beast back under control as well.

So far? Nothing. In fact, yesterday the therapist manipulated some neck muscles near my occipital and within seconds a hit came. It lasted all day and persisted even with an imitrex shot. I aborted each new hit, every 45 minutes, with O2 but they persisted until I took another trex injection at night. Did sleep through the night but I wonder what today will hold.

While all dayers aren't the norm, I do understand and have had them in the past, with yesterday the most recent. For me they seldom rise above a KIP 3 or 4 but persist and drive me nuts. But a good nights sleep and I'm ready to take on the day, and the beast, again.

We are eternal warriors in the conflict over pain. Blessings. lance

Hi

Lance that's exactly what I mean by all day every day it's not over KIP 5 but it goes on and on and last night it culminated in a full blown 10. Other days are just constant shadows with hit after hit spaced out by maybe 3 or 4 hours they are clusters of varying intensity and they wear you out. I have had MRIs as I have myself said there must be something else to this but there's not and that's good but it also means that I sometimes think Oh God will this ever end and I must be only one of very few people in the world that craves episodic cluster headaches! High cycle low cycle whatever way you look at it it's just wearing me out day by day I'm only 37 and I feel about 77 :'(

bring on the botox I say ;D

I'm with you Cailin. Just came back from the HA specialist on Tuesday with (in addition to my Topamax, Cambia and Sumavel) a script for Verapamil and Prednisone. After a brief 4 week cycle in October, I started a cycle Dec 1 that has been the worst I have ever had, with the worst pain that lasts 18 hours a day, with brief periods of relief mid-day, coupled with migraine-like symptoms. Maybe many of us are experiencing the effects of the bizarre weather patterns.....

My pain is really made a lot worse by High pressure and it goes nuts when there is Polar air which is exactly what happened over Europe last night with a big sweep of Siberian air and it was like it swept right through me!
On a positive note it's Friday tomorrow!

:D :D

MeL wrote on Feb 1^st, 2012 at 6:40pm:

I like to buy myself flowers when I go to the grocery store.  Or buy myself something good to eat ... just for myself.  It's the little things that we need to get us through the day.  I'm not talking about spending a ton of money every day .... just take time to smell the roses!  Tomorrow is another day and we'll have to find something else to get us through that day too.

What a lovely, lovely thing to say, especially to another who could use it so much.

Ah, ch.com.  Where else would you live?

Cluster is a nasty beast in that it's really hard to say what will and won't work. Even if something is working for a while, nothing says it will stay that way. The beast likes to change the dance from time to time, and you'll just have to learn new steps to keep up with it.

That being said, things also do change for the better from time to time. Keep your head up and look forward to the pain free days that lie ahead!

Hey Cailin,

How much vitamin D3 are you taking and did you manage to see your PCP or Neurologist about the test for 25(OH)D?

We've had at least three CH'ers take up to a month before they responded to the anti-inflammatory regimen and they were taking up to 30,000 IU/day vitamin D3.  Their 25(OH)D levels were also down around 30 ng/mL when they started the regimen.

Have you tried taking the anti-inflammatory regimen at night before bed along with a glass of lemonade or fruit juice high in citric acid?

What's up with the sore nose from oxygen therapy?  You should be inhaling and exhaling through your mouth.  If you've got one of the O2PTIMASK™ kits, remove the face mask and breath straight from the green "T" manifold 22mm coupler.

Hang in there and please keep us posted.

Take care,

V/R, Batch

Hey Batch

I'm still doing the vitamins but nothing yet as for the nose I find oxygen very drying on my whole system my eyes and nose seem to really suffer I'm not breathing through it, I get dry everywhere skin hair the lot It's just the way I react to it an irritating side effect you might say better than the rhino in my head but irritating at the same time.

I guess you could say it's something to take my mind off the headache so that's a plus ;D

Funny how Friday brings out the bright side eh?