Click this link to read a post I like on the clusterheadaches.com message board...

Bfingles

CH.com Newbie

Offline

I Love CH.com!

Posts: 3

Diagnosed with Cluster headaches a week ago
Sep 24^th, 2013 at 12:57pm

Hi, nice to see there is a place to hear about cluster headaches and know that I'm not alone. A neurologist diagnosed me a week ago, I also have Trigeminal Neuralgia. My headaches come at any time of day or night and an currently experiencing about 12 headaches a day. some are small and some put me on the floor.

I can actually set them off very easily, if I sit down for more than 5 minutes or lie down for more than 10 minutes, I get a terrible headache. Does any one else experience this? I can also set one off just by eating.

I also find my self extremely thirsty all of the time now, drinking gallons of water but I still get cramps at night - is this also something else folks are experiencing?

They have prescribed 240mg of Verapamil and 600 mg Gabapentin at night, which don't seem to work. They also gave me Sumatritan which works well to stop things. Prior to getting the Sumatritan, the neurologist gave me samples of Relpax to take and that worked as well. this is solving the night problem but not the day issues.

Sorry for the long rant but just have lots of questions

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

TeeJ2379

CH.com Veteran

Offline

I Love CH.com!

Posts: 140
Central PA, USA
Gender: male

Re: Diagnosed with Cluster headaches a week ago
Reply #1 - Sep 24^th, 2013 at 1:31pm

Hello,

Please let us know where you live and what if any other treatments you have tried. Have you tried O2, energy drinks, or looked at the Vit D3 Regiment on this site?

Verapamil takes a few weeks to build up, and 240mg is going to be a starting dose - you may need to go higher, up to 1000mg but your doctor will make that call - I am not familiar with Gabapentin.

Personally, Verapamil at 320mg helped me block 90 percent of my attacks, so also add lithium to help as well. I also use Melatonin at night (10mg) to help me sleep. Regular sleep is a key factor so try to sleep regular schedule when possible. Also Energy drinks (Monster, Rockstar, Red Bull) - anything with Caffeine and Taurine are affective if you chug one at the first sensation of pressure and pain. I am just now out of my first cycle that lasted all summer - I am doing the Vit D3 Regiment still and I recommend you look into it.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Its not a cure, and it can take a few months to get your D3 levels up. Any questions let us know. Read this board and as questions.

Good Luck!

TeeJ

Back to top

Pain is a wonderful teacher and motivator...

IP Logged

Bfingles

CH.com Newbie

Offline

I Love CH.com!

Posts: 3

Re: Diagnosed with Cluster headaches a week ago
Reply #2 - Sep 24^th, 2013 at 1:53pm

Thanks for the info, I live in mountain View California. Dr. is working on getting the O2 treatment. haven't tried anything else except an ice pack when I first feel one coming on, sometimes that helps and limits it to a small one.

Big problem is not being able to sit down, which makes driving and working impossible

Back to top

IP Logged

Guiseppi

CH.com Moderator
CH.com Alumnus

Offline

San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: Diagnosed with Cluster headaches a week ago
Reply #3 - Sep 24^th, 2013 at 3:00pm

Welcome to the board. I'll second the suggestion on the oxygen, has all but eliminated by need for the imitrex shots. Here's the info link on it:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

This link will show you how to get set up with welding oxygen:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Joe

Back to top

"Somebody had to say it" is usually a piss poor excuse to be mean.

IP Logged

Bob Johnson

CH.com Alumnus

Offline

"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: Diagnosed with Cluster headaches a week ago
Reply #4 - Sep 24^th, 2013 at 4:24pm

Your at the early stage where there is no option to but adjust dosing and try new meds until the doc finds a combination which works for you.

As hard as it is, avoid playing with doses or adding treatments which you will have recommended to you here. The doc needs to be both informed and be the only captain of the ship.

I'd not be surprised if the Verap dose doesn't go up over time. Many use 600+mg. The Gap. isn't well rated but he must have some idea in giving it to you. Still, print out the PDF file, below. It's a nice tool to lead discussions with him about his thinking.

Back to top

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

(96 KB | 16 )

Bob Johnson

IP Logged

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: Diagnosed with Cluster headaches a week ago
Reply #5 - Sep 25^th, 2013 at 8:19am

Yes to everything said above, but...I'm concerned about the use of the words "oxygen treatment." Uninformed docs will try to give us cardiopulmonary levels of O2 (wrong equipment, too low a flow) thinking we can stick a canula in our nose and all is well. Read the link at left. O2 is a lifesaver but only when used properly. That's what you should demand. blessings. lance

Back to top

IP Logged

Bfingles

CH.com Newbie

Offline

I Love CH.com!

Posts: 3

Re: Diagnosed with Cluster headaches a week ago
Reply #6 - Jan 24^th, 2014 at 12:22pm

So I thought I would update everyone. First I appreciate all the folks who reached out to help and offer advise. As it turns out I was miss diagnosed. After reading all the posts on this website I realized I did not fit into the cluster headaches diagnosis. I continued to push my Neurologist and he eventually sent me to the Stanford pain clinic (I highly recommend this clinic for anyone suffering any kind of headache pain including cluster headaches) They quickly determined that I did not fit in to a classic symptoms and order a fiesta MRI, which revealed that I had cancer (missed on the 2 previous readings of my MRI), it is a rare form of Squamacell carcinoma that went in instead of out and attached itself to my Trigeminal nerve causing all of the pain. Just finishing radiation and chemo treatments now, future looks good and I'm glad I have answers. The moral to the story is keeping pushing to make sure you have been diagnosed properly and get relief form your pain.

Back to top

IP Logged

Bob Johnson

CH.com Alumnus

Offline

"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: Diagnosed with Cluster headaches a week ago
Reply #7 - Jan 24^th, 2014 at 4:25pm

Thanks so much for keeping us informed. One of the major reasons we advicse working with headache specialists is because of the potential for pseudo-Clusters to mislead both doc and patient.

If you're curious:
Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Back to top

Bob Johnson

IP Logged

Potter

Ex Member

Re: Diagnosed with Cluster headaches a week ago
Reply #8 - Jan 24^th, 2014 at 5:40pm

Bfingles wrote on Jan 24^th, 2014 at 12:22pm:

So I thought I would update everyone. First I appreciate all the folks who reached out to help and offer advise. As it turns out I was miss diagnosed. After reading all the posts on this website I realized I did not fit into the cluster headaches diagnosis. I continued to push my Neurologist and he eventually sent me to the Stanford pain clinic (I highly recommend this clinic for anyone suffering any kind of headache pain including cluster headaches) They quickly determined that I did not fit in to a classic symptoms and order a fiesta MRI, which revealed that I had cancer (missed on the 2 previous readings of my MRI), it is a rare form of Squamacell carcinoma that went in instead of out and attached itself to my Trigeminal nerve causing all of the pain. Just finishing radiation and chemo treatments now, future looks good and I'm glad I have answers. The moral to the story is keeping pushing to make sure you have been diagnosed properly and get relief form your pain.

   Well said.

      Potter

Back to top

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!