Hi everyone,

My name is Chris. I am so thankful for this message board.

A little about me.

9 years ago I woke up one morning feeling very sluggish and almost hung over. I hopped into the shower and thought I would feel better. Unfortunately, that didn't help. In fact, that's when the pain started. I carried on with my day and went to work not being able to shake the pain or the sluggishness.

My symptoms continued to get worse and worse. Each time I went to the doctor they either said I was suffering from stress, or anxiety, or depression, or a migraine. None of the doctors even made a recommendation to a neurologist. One doctor prescribed me Imetrex. Well as I am sure most you know already, that is for migraines.

Year after year, I kept getting the same diagnosis so I gave up hope and almost gave up period. Everything in my life was crumbling due to my chronic pain. I eventually fell into a depression. I dreaded waking up in the morning. There were some days where it was tolerable, but for the most part I barely made it through the day.

I have never experienced anything so painful in my entire life. And I wouldn't wish this upon any decent human being either.

My typical day was to wake up feeling groggy and the pressure in my head would normally worsen throughout the day. It got to the point that I couldn't even stand laying on my left side because it would trigger the pain to almost double what I normally felt. Vomiting, and loss of weight due to not being able to keep anything down occured because of the pain. Anyone I talked to about this said that it was just in my head. Yes it was, the pain was real and it was coming from my head.

Fast forward to last month. A new neurologist opened up a clinic in town and I thought it would be my last hope. I am so thankful for the doctor and the staff there. He informed me of CH and what it was. I googled it and line for line it was like reading a list of everything I was experiencing. I couldn't believe it. Finally someone who understood and didn't judge me.

So I was diagnosed with CH and Migraines was prescribed Amitriptyline. After my first dosage, I could feel the difference. It was like I was given back my life again. The pain wasn't gone, but it was the most tolerable I've ever been in 9 years. I continued increasing the dosage like I was prescribed but at the last day of my maximum dosage, the pain came rushing back.

Well back to the doctors I go. I was then prescribed Nortriptyline and will be starting that this evening. I had to ween myself off of the amitriptyline and I am hopeful this new medicine will help me.

I look forward to getting to know each of you and am very thankful for this forum.

Best regards,
Chris

Hello, Chris. Sorry to hear about your pain and suffering. We can't, won't or don't try to make diagnoses here but we can try to help through to pain. On the left side of your screen is a button cluster quiz, please take the quiz and let us know to results.

Thanks BobG.

I took the quiz and answered yes on #4. The rest were of the answers to 1-8 were No. 9-16 were answered with Yes, with the exception of 15 which was a No.

Hope that helps.

Hi Chris, and welcome,
To be honest they don't sound like CHs your suffering
from, and neuro's aren't up to speed when it comes too
CHs. Best you find a Headache Specialist in your area
and talk it over with him/her.

Hoppy.

Hoppy wrote on Jan 12^th, 2015 at 8:28pm:

Hi Chris, and welcome, To be honest they don't sound like CHs your suffering from, and neuro's aren't up to speed when it comes too CHs. Best you find a Headache Specialist in your area and talk it over with him/her. Hoppy.

thanks for the reply. I guess I will go back to the drawing board and hopefully find my answers. :S

Hi Chris,
Where in AK do you live?  I was just there with my son this past July.  My 7th time in AK and his 1st time for his 14th birthday.  I hope to reside there one day.  Considering my love for Alaska, I will be proud to help you any way I can.  Understand that I am not a doctor and not able to diagnose you.  However, after 30+ years, I am very experienced with the pain and suffering as well as my understanding of Cluster Headaches is something I pride myself on, so I can confidently offer you some solid advice and encouragement when times are rough.

Here is my 1st recommendation...tell us where in AK you reside.  I have compiled a list of recommended doctors who are familiar with (CH) Cluster Headache treatment and can hopefully refer you to one of these doctors.  there are not many in AK, so hopefully there is one close to you.  Where do you live?

Secondly, read the left side of your screen, as much as you can and then take a break and then read more, lots and lots to read, but you really need to understand the severity of this complex disorder if you are to help yourself.  Begin reading from the top tab titled "New Visitors" and work your way down.  This may take several days or weeks, depending on your sincere interest, but it truly is the best resource available regarding CH's.

When you finish reading, you should be more knowledgeable than most doctors.  Unfortunately, if somebody suffers from CH Cluster Headaches, they actually need to be more knowledgeable than most doctors, because this disease is so rare that most doctors are not familiar.  Which basically means that you, the patient, must be the pone to teach your doctor.

You might not even have CH's and hopefully you do not.  There are many diseases out there that are head/brain related that can mimic CH's and many people are often misdiagnosed.  This is one of the many important reason for seeing somebody who is qualified to treat brain disorders.  So, back to the basics...where do you live?

-Gregg in Las Vegas

Hi Gregg,

Thank you for your welcoming.

I am originally from Vancouver Island but moved to Anchorage Alaska 10 years ago. I am going to take your suggestions and read as much as I can.

My last visit was to Alaska Neurology Center here in town. I saw Dr John Boothby who was recommended to me as a headache specialist.

Please ask me any questions and I will answer them all to best of my ability.

Again thank you. I hope everyone here is able to find something to help them. It breaks my heart knowing good people are in pain.

Where did you go while in Alaska?

Chris, did you get any X rays done to rule out
any other nasties that might be lurking in your head? With
the Imitrex, the pills take to long too work, most folk
here are on the injectors, and they swear by them, as an
abortive.

Cheers, Hoppy.

Hi Chris,
Sorry to read you are suffering and in pain without the professional help of a doctor who truly knows how to effectively treat Cluster Headache sufferers.

It just so happens that a little over one year ago, I compiled the most comprehensive list of all doctors familiar with Cluster Headaches throughout the USA and Canada. 

Below you will find my list of doctors who are practicing in/near Anchorage.  These doctors were all recommended by other CH sufferers residing in Alaska.

Anchorage
Dr. Mary K Downs
Neurology Consultants of Alaska

Dr. Stanford W. Downs
Neurology Consultants of Alaska

Dr. Franklin E. Ellenson
Alaska Neurology Center

Dr. Robert A. Lada
Peak Neurology

Dr. Larry A. Levine
Alaska Spine Institute

Dr. Marci L. Troxell
Peak Neurology

Wasilla
Dr. David D. Buckland
Mat-Su Neurology

This completes my list of Anchorage doctors who have all been referred/recommended from fellow Cluster Headache sufferers.

Wishing you and every CH'er in Alaska good luck finding a doctor you are pleased with!   ;)

-Gregg in Las Vegas

PS...You asked where I recently went while vacationing in your great state...Anchorage, Denali, MatSu Valley-Palmer/Wasilla, and all over the Kenai...Chugach, Copper Landing, Homer, Seward.

Assuuming that your doc is still Dx a Cluster-Migraine picture, the treatment with antidepressants is quite incomplete--nothing here fo the Cluster component.

This is a rare and difficult combination of disorders to treat but commonly involves using meds which are effective for each component.

Bob Johnson wrote on Jan 13^th, 2015 at 2:52pm:

Assuuming that your doc is still Dx a Cluster-Migraine picture, the treatment with antidepressants is quite incomplete--nothing here fo the Cluster component. This is a rare and difficult combination of disorders to treat but commonly involves using meds which are effective for each component.

As someone who gets CH and migraines, I totally agree with Bob's comment. Whilst some medication will work well for both of them, like imitrex injections, there can be issues with the combination of a migraine preventive and a CH preventive, e.g. propranolol and verapamil cannot be used together.