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        Cluster Headache Help and Support >> Getting to Know Ya >> Hello from Beautiful BC, Cda.
        
(Message started by: Brenda on Dec 10^th, 2007, 12:51am)

Title: Hello from Beautiful BC, Cda.
Post by Brenda on Dec 10^th, 2007, 12:51am

It is a pleasure to be a part of this group and i hope to gain some understanding of the headaches that i experience.

They began about 12 years ago when i became ill for a brief period of time. I was in my thirties.
It was a viral blood infection that rendered me very ill and i was on different antibiotics for many weeks with serious inflamation appearing in my body....a sed rate of 60+ which went on for a number of months. It was the first time in my life i had ever felt seriously ill and i never fully recovered.
I developed severe muscular pain and discomfort and with that came these very strange headaches.
I tested ANA positive and was then diagnosed with FM.

A band of pressure would bind my head....a pressure would go behind one or both eyes with one side of my face and head feeling the brunt of the discomfort. Then throughout my head i would get what i described as point pain.

A sharp "lightening Strike' of pain that would hit and run in different areas of my head/scalp.....with that would come what i called ''rice crispies"....snap, crackle, pop.....little ticking noises in the area or point that was about to get struck by the "lightening bolt".
I can also describe the point pain as an area where an acute pressure would build....like a balloon blowing up, it would peak....make the ticking noises, lightening would strike, then the balloon would deflate only to come back a few moments later in another spot on my head.
This happened almost every day for years.....

I was afraid to tell people about the "snap, crackle, pop" in case they thought i was nuts!

This pain would stop me in my tracks....i was sent to a neurolagist....i described what was happening and told him about the ticking noises....he diagnosed me as having cluster migranes.
I live in a small community, this was visiting Dr. and i never did get to see him again.
These headaches were oddly bearable as they "hit and ran"......appearing for only minutes, but numerous times throughout the day. I can not even remember the medication he prescribed....i know it never helped, so i quit using it.

About 5 years ago they went away!!!
Well, almost went away.

A friend recommended a Shiatsu therapist in my area that worked on headaches. Skeptical and pessimistic, i went to see her. Dang....she helped!
That type of intense massage appeared to help lessen the pressure and seeing her every few weeks as i could afford....things eased up. She worked primarily on my neck, shoulders and then what ever else they do as therapy.

Soon, i was able to lessen my visits to once a month and eventually i quit altogether.
Only every few months would i experience a slight jolt...i would brace myself...thankfully, it would not bloom into the lightning strikes of the past. Like i mentioned , 5 years have past.

Then 2 months ago they came back with a vengence that i can not fully describe.

It began when i went to the dentist for a root canal on an abcess canine tooth.

I've had a few root canals over the past few years, but this one was badly infected.
I went on antibiotics, and began to eat advil like candy for the headache.

Finally, after about 10 days the dentist began to work on the tooth.....i told him about the headache, but he dismissed it.

They began the first part of the root canal which would need to be done in 2 or 3 sessions. He explained that this was the longest canine root that he had ever worked on.
One inch long to be exact....going up beside my left nostril.

Two days later i was at the hospital with lightening strikes that i could not bear. My head was gonna blow up.

My dr. has said that he suspects the acute root canal procedure triggered these migranes

The cranial pressure is unbearable, the snap, crackle, pop, is never ending.....the jolts of intense point pain stymie me.
They never ever go away. I have been to the hospital about once every 10 days for the past 2 months with head and neck pain so violent i can not handle it. It makes me believe i'm gonna go crazy.
At emergency, they hook me up to IV medication for however many hours and as the pressure comes down.....they send me home.

I have tried a few different medications, nothing has helped this.

Now, there are different degrees of discomfort, much is bearable....it just never ever completely goes away...i have a headache every day, all day. I am currently taking Zomig....began two days ago and Prednisone two days ago as well.....neither medication has touched this as yet.
I am also now taking a sedative at night.

This has caused my life so much upset. I am missing work....i had just started a new career. It is affecting my marriage....my husband thinks i should just "go take a few of your pills and lay down". When this head aches takes off, i can not lay down!!

I pace. I try to sit still, upright and not move.....but if i go into a full blown attack, i can not sit.....i pace and i cry. I literally pray to the powers that be to please have pity on me and take this monster out of my head.

It is behind my left eye and the left side of my face.
It is top of my neck, up the back of my head into my skull.
It is all through my forehead causing deep creases.
Both eye lids are swollen.....my nose, internal/up inside hurts.
It is the line that runs, like you part your hair in the middle, right across the top middle of my head.....pain!
It does lightening bolt pain and a constant forever pressure pain.
I am always afraid that it is going to blow up into the attack that sends me to the hospital at two in the morning with my husband who just can not feel or understand what i am going thru. He thinks i can take a magic pill and it should be all better.....that i am bringing this on myself.

I am scared....it never goes away.....its now going into a third month and i do not know how much longer i can keep up....i am becoming exhausted with pain.

This has been such a long story....thank you to anyone who has been able to hang in there and read this.

Has anyone experienced the 'ticking and popping"...what is it???????

My Dr. is sending me to a specialist in the city soon.....i'm awaiting his call.....i can only pray for relief.

My friends think they understand, they say....yeah, i get headaches too.....but, they don't get migranes....when i try to explain why i am staying home so much, about the migrane....they advise me to try Advil migrane relief. If only it was that easy.

Thank you for hearing me.

Blessings
Brenda

Title: Re: Hello from Beautiful BC, Cda.
Post by barry_sword on Dec 10^th, 2007, 7:02am

Hi Brenda, and welcome. So sorry you are going through this. Have you taken the Clusterquiz 4th down from the top to your left?

Please read and print off the info on the o2 from the left. It works wonders for most of us here. Catch it at the very first sign or twinge of an oncoming attack and use 1oo% o2 and a non-rebreather mask at a high flow rate of 15lmp and try and remain calm as possible while doing this.

I was probably one of the more skeptic one's here about o2 but showed my Neuro the info on it and asked if I could try it. He said let's do it and WOW!!! I can stop one of those hits as quickly as 4 minutes, but only if caught in time. I use Verapamil at 480mg daily as a preventative and I am now into my 2nd year with this cycle, but with very few hits getting through my barrier.

The shadows have backed off so I am in the middle of tapering off my Verapamil to see where I am at with this cycle. If wrong, I can go back to my full dose of Verapamil and have lots of o2 on hand. Kinda scary doing this, but I will see.

BC must be a very nice place to live, we have only seen pics of it. Please read all you can and I wish you all the best. Feel free to ask any questions, we are all in this together. This family is awesome!!

Here is one more thing, most of us have had a CT SCAN or MRI to make sure there is not something else wrong. I thought for years my pain was a tumor or something from previous head injuries.

Must get ready for work, so I hope you can get a Doc who really understands what you are going through. It is a lot easier to get a narcotic drug (which do not work at all) than it is to get something as natural as o2.

Take care Brenda, and will talk soon. I must get ready for work.

Barry

Title: Re: Hello from Beautiful BC, Cda.
Post by BC_Battler on Dec 11^th, 2007, 12:33am

Hello Brenda;

Greetings from a fellow BC'er! I wish we were connecting under happier circumstances - I'm so sorry to hear that you are having such a difficult time. It makes it even harder when people around you don't understand the scope of what you're suffering with.

CH's are scary as hell, quite honestly, and this board is a wonderful support for people like us when we find ourselves in painful times. When I was first hit with CH's I wondered how I would ever cope, but I have found a way to manage. My life isn't as good as it was before I started battling the Beast, but it's still pretty darn good.

I know this is your third month of pain, Brenda, but stay strong. You'll sort something out when you see your specialist, and your life will turn around. Stay strong, and know that you have support here on this board.

Let me know if I can ever offer you any ideas or other assistance - it's definitely easier when we all fight this thing together.

All the best, Brenda. Cheers

Title: What r the rice crispies Re: Hello
Post by Brenda on Dec 11^th, 2007, 1:13am

Thank you to those who have responded to my post.

One of my questions is regarding the "snap, crackle, pop" that goes on in my scalp, forehead, between my eyes and neck which appear seconds before and during a strike of pain.
Or the ticking/clicking will just be there all on its own....with no great connection to acute pain.... Just with little jolts.

This ticking or clicking noise is also quite prominent in my neck and runs up and over my head.....if i sit very still, which is hard to do during an attack....they are not too bad, but as soon as i move my head....the "rice crispies" begin.
Any time i turn my head, move my head, these ticks and clicks appear....it is very much high up my neck where my neck meets my skull?

I swear if you put your ear to my head you'd hear it.

Does anyone have these ticks and clicks?

Thank you
Brenda

Title: Re: Hello from Beautiful BC, Cda.
Post by thebbz on Dec 11^th, 2007, 2:30pm

I have ticks and clicks in abundance. ;;D The hypothalmus is the the brains brain. When being hit your sensory nerves and all of your glands....all of them are out of balance. So your sensory organs and autonotomic nerves are going be out of sorts. Clicking and popping in the ears and neck are not uncommon.
Lightening does strike in the same place. Right behind the eyeball.
all the best and welcome
thebb

Title: Re: Hello from Beautiful BC, Cda.
Post by Miz_D on Dec 17^th, 2007, 5:40am

Hi Brenda,

I'm originally from Vancouver and that is where my ch journey began...if you aren't already seeing a neuro you might want to try getting a referral to Dr. Robinson...I worked with him for 6 years (I moved away from the city last year) and he is the best!

PS: I am a chronic and he helped keep me sane and as pf as possible through those years...I sure do miss him :(

Title: Re: Hello from Beautiful BC, Cda.
Post by ttnolan on Dec 17^th, 2007, 6:35pm

I wouldn't wory about the rice crispies, that has been normal for me for 32 years. It is hard not to freak out with that kind of pain. I went through 7 years of hell, wondering when my head would just explode and kill me, but finally found oxygen and that put me at ease, well compared to freaking out anyway. For me it aborts the pain in 5-15 mins. and makes life worth living again. I wish you the best, and when someone says "ya I get headaches too" you have my permission to slap them. ;;D

Title: Re: Hello from Beautiful BC, Cda.
Post by Brenda on Jan 3^rd, 2008, 1:37am

Hi Miz_D

Thank you for your reply and thanks to everyone else who took the time to send me a message.

My Dr. is setting up an appointment for me to see Dr. Robinson in Vancouver. We have been waiting for a reply to the request for about 2 weeks now, but it is a bad time of year to try to make an appointment such as this.
Hopefully i will hear something soon.
I have been back to the hospital at least three times since my last post....my headaches are daily and becoming debilitating.
I am being treated with Maxeran and Zomig, they help slightly for a very short period.
I am starting a new medication prolly tomorrow and i can only hope that it helps .

I'll post if the new medication helps at all.

Happy New Year to everyone.....hopeing for a Migraine free New Year and for years to come.

Blessings
Brenda

Title: Re: Hello from Beautiful BC, Cda.
Post by kcopelin on Jan 3^rd, 2008, 1:48am

Welcome home Brenda!
Sounds like you have a good plan and will be praying the neuro diagnoses and appropriately treats your CH. Stick around here for awhile, best support group in the world and centuries of combined experience.

(((hugs)))
kathy

Title: Re: Hello from Beautiful BC, Cda.
Post by rocketman3104 on Jan 3^rd, 2008, 8:32am

Hi Brenda

Wish you didn't have to find this site, but welcome home.

There is alot of good information here. Try to get your doctor to get you the oxygen. Check out the link on the left. It works wonder for most of us! At least until you can get to the nuro.

High flow o2 will abort mine almost 85% of the time. Hope this helps. Good luck and again welcome.

Title: Re: Hello from Beautiful BC, Cda.
Post by Guiseppi on Jan 3^rd, 2008, 10:23am

The advice you've been given is spot on, just another welcome to the board! ;)

Guiseppi

Title: miz_d, Pete B, and others who replied.
Post by Brenda on Jan 18^th, 2008, 1:43am

Thank you to all those who sent me a message.

Thru Xmas and New Years i was inundated with head pain so severe i didn't think i was gonna make it out in one piece.

I was getting no help in the communtiy where i live....difficult to get in to see my Gp etc etc.
The hospital here is classified as a '3'...meaning great for stitches, but not much else.

So, on Fri. Jan 4th, i put myself on a bus and went to the city....i crawled into a hospital Vancouver.

They were very good to me there. Within 2 hours they had me in for a cat scan. My blood pressure was 198 / 120. They gave me medication for my blood pressure and an injection for the head pain.
The Dr. said my cat scan was good...we had a chat and he said he felt i had "cluster migraine with neuralgia".

He gave me the name for a neuraligist in that part of the City. Saturday i came home.

Sunday i was back in our hospital here. My head was gonna blow up....again my blood pressure was way to high. I was given a ramipril for the blood pressure and lord only knows what else. I was so out of it with head pain. I came home that evening.

I stayed in bed all the Monday, Tuesday i was back into my Gp.
My Dr. has put me on Flunarizine....it appears to be helping somewhat....but there are side effects which i'm still sorting thru.
My head still has pressure and strikes of pain....but it has come down quite a bit.....i have been on the medication for 9 days.....1 tab each nite.
It was also supposed to help with my blood pressure.....but, it brought my pressure down too low and i became dizzy.....106 / 70.

So, i am gonna try 1 tab every second nite and see what happens.

Unfortunatley, tonight i am having a bad night......this head pain has been the worst in a week and i am hoping it is just a bad nite and i will sleep and wake up OK in the morning.

The specialist who was recommended, a Dr. Robinson out of VGH.....i have made an appointment with him.....they said i could get in to see him next October 13th....nine months away!!! :o

I phoned another neuraligist in North Van who i was also refered to and they are putting me on their cancelation list .....they said it should only be a few weeks before i could see him???

Anyways.....i can only hope and pray that i will soon have my life back.
I will also hope and pray for all those who are suffering, however they are suffering, that they too will find some peace.

Thank you all muchly,
Brenda