Jump to content
ClusterBusters
Primrose

New here and need some advice

Recommended Posts

I was diagnosed with chronic cluster headaches four years ago. I also have episodic migraine with aura and they are very different than CH. I have tried most of the standard preventive meds with no success. I have not tried Topamax because I weigh 95 lbs and my first  neurologist said the weight loss would be dangerous. My bp is typically 80/50 so I was unable to take high enough doses of Propranalol to be effective. Verapamil caused angioedema. I have also tried Amatriptaline, Indomethacin, prednisone and cyclobenzaprine. Sumatriptan is always effective in aborting. I split 100 mg and limit myself to 2 every 24 hrs with a maximum of 4 in 48 hrs. I do not have rebound headaches. In between those attacks I do not take anything, and have never used OTC meds. I was finally able to get oxygen but I had a terrible time with it. I was delivered a large tank on a stand and two smaller tanks. They came with a plastic face mask and a great length of tubing. My bad attacks typicically start in the middle of the night so upon awakening with one I put on the mask and turned the flow rate to 15. I must say that I have a great deal of pain in my nostril during an attack (not sinus pain per se.) The cold oxygen flowing up that nostril intensified the pain considerable and I did not experience any great relief. After trying the oxygen repeatedly over several months I concluded it just doesn't work for me. I read in these posts that if oxygen doesn't work you don't have clusters. I have been to three neurologists who are all headache specialists and each one has felt the need to diagnose me on their own accord. The unanimous conclusion has been that I do indeed have cluster headaches. I don't know that oxygen is 100% effective for everyone with CH. I do follow a strict vitamin regimen but because of small body mass I am not sure about dose. Any thoughts or suggestions would be greatly appreciated.

Share this post


Link to post
Share on other sites

Hi primrose,  Really sorry to hear of your situation, you are not alone and I think you have found the the right site for advice ,as I and many others have found clusterbusters invaluable! . First I would like to suggest looking on YouTube and compare your attack to the footage of the poor folk having a cluster attack! As I am hoping you might not have cluster! Fingers crossed for you! 

Share this post


Link to post
Share on other sites

Filacibin, thank you for your quick response. I have seen many YouTube videos about clusters - I could have made those. I take your suggestion as a sincere and kind gesture so I hope you will not find me rude for saying that I have been conclusively diagnosed and am not seeking input on that. In fact, when well meaning people try to second guess me or my drs it causes me a great deal of anxiety. If anyone else chooses to reply to my request for help may I respectfully ask that you do not try to rediagnose me? Thank you.

Share this post


Link to post
Share on other sites

Welcome to the community Primrose!

I've had clusters for 30 plus years and personally know many, many clusterheads and have only met 2 for who oxygen didn't work!!  We see many here who make that statement but it's usually due to inadequate equipment and/or ineffective breathing technique!

Like yourself, I can't tolerate breathing it thru my nose, in fact, I can't tolerate anything touching my face during a hit so I use the mouthpiece that comes with the optiO2mask.

I stand facing my large O2 cylinder and forcefully exhale and then do a mini crunch to force the last bit of air from my lungs....using the mouthpiece I inhale as much O2 as I can and hold it while the ambubag refills....repeat the exhale cycle.....I typically abort attacks in 5 to 8 minutes!!

Dallas Denny

Share this post


Link to post
Share on other sites

Thank you, Dallas Danny. I suspect you are absolutely right that I was not using the equipment effectively. I have not had much guidance from my neurologist, though maybe the direct delivery of oxygen is as different as each person using it. I imagine we have to figure that out for ourselves. I have sent the oxygen tanks back as they were quite costly. Do most people own their own tank or go through a supply company? I will talk to my neurologist to get back on track and follow your directions for use. Thank you again.

Share this post


Link to post
Share on other sites

This is the mask (of which you can use just the breathing tube) that Denny was talking about: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

The vitamin D3 regimen has helped a lot of people.  The creater of that regimen, who has followed it closely, is Batch.  I'd strongly urge you to contact Batch -- who will be happy to hear from you and will respond quickly and supportively -- to discuss the regimen for your situation.  To contact him, go to the envelope icon at the top right of the page, and type Batch on the To line.

It's very rare for sumatriptan pills to work so well.  You are fortunate in that regard -- thank goodness, since so little else seems to help you.

Many people here have ended cycles and even sometimes prevented them through "busting."  Busting is why this site was created.  You can read about busting in the numbered files in the ClusterBuster Files section of this board.  If you want to know more, all you have to do is ask (preferably at one of the closed boards, such as "Share Your Busting Stories." 

 

Share this post


Link to post
Share on other sites

Welcome Primrose!

Most neuro's don't know how to instruct you in the use of O2 unfortunately. And I do not support the idea that if O2 doesn't work, you don't have CH. That is bunk. The proper technique is the important thing. Used improperly, many do not get relief.

People who can get O2 thru their insurance use a service. Those who cannot, will often use a welding set up to get their O2.

How you use it is the MOST important part. You have gotten a lot of great advice already. Likely that pain in your nostril is from a branch of the Trigeminal Nerve - which can light up half of your face and side of your head. It runs everywhere on one side and you have one that enervates the other side. A diagram goes a long way in explaining 'Why does my ear hurt?' stuff.

All the best and hang around. :) Ah and I use the breathing tube too. Nothing touching my face please. 

Share this post


Link to post
Share on other sites

Hey Primrose,

Dallas Denny, CHfather and Spiney have given you some great suggestions that should help to control your CH.  I'm particularly interested in your case as you also have episodic migraines with aura.  My wife was a migraineur for over 20 years with bouts hitting monthly for 3 to 5 days like clockwork until she started the anti-inflammatory regimen in December of 2010.  She hasn't had a migraine since. I've sent you a PM with information to discuss with your PCP or neurologist.

Take care and please keep us posted.

V/R, Batch

Share this post


Link to post
Share on other sites

Thank you, Dallas Danny. I suspect you are absolutely right that I was not using the equipment effectively. I have not had much guidance from my neurologist, though maybe the direct delivery of oxygen is as different as each person using it. I imagine we have to figure that out for ourselves. I have sent the oxygen tanks back as they were quite costly. Do most people own their own tank or go through a supply company? I will talk to my neurologist to get back on track and follow your directions for use. Thank you again.

Share this post


Link to post
Share on other sites

Excuse the duplicate post. I am having a little trouble getting my reply to Batch to load. In the meantime, thanks to Spiny and CHFather for all of your helpful input. 

Reply to Batch is:

Batch. I can't thank you enough for taking the time to send this lengthy and detailed message. I have read the information several times and am trying to sort and process it all, at which time I am sure I will have some questions. I am wondering what you meant by allergic reaction.

I have been taking 5000 IU Vitamin D3 for many years. I also take Magnesium and Glucosamine. Drinking an adequate amount of water has never been a problem for me.  My one concern with taking high doses of vitamins is the body mass issue. What do you think of a small woman vs a full grown man taking the same dose?

I do not know how the onset of clusters was for most people, but mine may be a little different. I had about three months of sudden and intermittent dental pain in my lower right jaw. It was so extreme at times that I was unable to eat, drink or brush my teeth. The pain never settled on any one tooth, it struck different areas and would last several hours and then disappear for days.

My dentist was unable to find any cause for it, and advised me to see a neurologist as she was sure it was a trigeminal problem. At that point, the pain morphed into the first cluster episode I had. I knew right away that it wasn't migraine as it really is very different. Thereupon, I saw a neurologist who quickly diagnosed me with clusters (I did have three MRIs with contrast - head, neck and optic nerve.) Within a few months I became chronic.  I do have embedded migraine, though not chronic, so I also will consider the regimen that your wife uses for migraine.

I will see if I can get an appointment with my dr and show him the vitamin protocol and ask for blood work. 

I just really want to thank you for your help with this. In a short time you have done more than my drs and I feel somewhat optimistic and positive.

Primrose

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×