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        Daily Chat >> General Posts >> whats in a name?
        
(Message started by: hurtzdonut on Feb 5^th, 2008, 1:29am)

Title: whats in a name?
Post by hurtzdonut on Feb 5^th, 2008, 1:29am

Guess I shouldnt be here at ch.com.. my latest Neuro says I dont have clusters Headaches, but I have Cluster Migraines.... Go figure.. Due to Light sensitivity and Noise setting off attacks. Just changed Neuros,from one that said what I have is genenic, cant be fixed, and buried me in all manner of drugs. The side effects of lithium,verapamil,etc, really did a number on me.. I now have one (in the same group of Neuros!) who is 180 degrees out from the last one!! Seems these guys dont talk to each other. Each doc has his own Idea what this is all about, and he/she knows best! Right now, Im on a water kick, and has reduced the severity of the attacks by 75 percent.. I still use coffee to cool the beast when hit.. And my neuro said to me , that he had never heard of that.. and called it "weird" whatever works..

Title: Re: whats in a name?
Post by nani on Feb 5^th, 2008, 1:40am

Maybe you should see someone who specializes in headaches. Not all neuros do.

I'm photophobic, and find that light, noise, and sensory overload in general can trigger attacks.

Have you tried oxygen?

Title: Re: whats in a name?
Post by ski2k on Feb 5^th, 2008, 2:43am

I agree with Nani.... check into finding a headache specialist. While light sensitivity is generally considered a migraine trait, it does occur in clusterheads as well. Nani said she's sensitive, and I am too. We're all a little different. Sound bothers some (like Nani), while not others. Some have a problem with strong fragrances (my sister who gets migraines is sensitive to certain scents).
I guess what I'm trying to say, is some of the "other" symptoms we get don't always add up to CH, while there are certain ones that most certainly do. Find a qualified doc!
Definitely look into trying O2 if you haven't. It's been a life saver for a lot of us!

Best of luck,
Adam

Title: Re: whats in a name?
Post by Ghost on Feb 5^th, 2008, 12:42pm

on 02/05/08 at 01:40:54, nani wrote:

Maybe you should see someone who specializes in headaches. Not all neuros do.

I'm photophobic, and find that light, noise, and sensory overload in general can trigger attacks.

Have you tried oxygen?

You cant fool us you love cameras! ;;D ;) :-*

Mike

Title: Re: whats in a name?
Post by Tiannia on Feb 5^th, 2008, 7:23pm

I've heard that. In fact I've used that word to explain it to one of my former bosses who just could not get it. His wife got migraines though, so I told him that I get cluster migraines. "That rather then once a year and last 2 days, mine sqeeze the 2 days of pain into 2 hours and them over and over every day." His eyes got big and said, "Your Husband must really hate the words, "Not tonight I have a headache", then."

Title: Re: whats in a name?
Post by Linda_Howell on Feb 5^th, 2008, 7:40pm

Quote:

one that said what I have is genenic, cant be fixed, and buried me in all manner of drugs. The side effects of lithium,verapamil,etc, really did a number on me.. I now have one (in the same group of Neuros!) who is 180 degrees out from the last one!! Seems these guys dont talk to each other. Each doc has his own Idea what this is all about, and he/she knows best! Right now, Im on a water kick, and has reduced the severity of the attacks by 75 percent.. I still use coffee to cool the beast when hit.. And my neuro said to me , that he had never heard of that.. and called it "weird" whatever works..

Sounds to me like a whole lot of Doctors who need to get their heads out of their a$$es or get fired.

I know it isn't easy finding a Dr. who not only knows what he's talking about but also cares...I would suggest that you do though. You're suffering needlessly in the interim.

Please read all there is here first..the more you know, the better.

Good luck to you and I truly hope you come back here and keep us updated. PLEASE!!!!!!!!

Linda

Title: Re: whats in a name?
Post by Gator on Feb 5^th, 2008, 8:59pm

The jury is still out as to whether "Cluster Migraines" as an actual diagnosis even exist. In the strict guidelines of the IHS's ICHD 2, there is no such thing.

http://www.ncbi.nlm.nih.gov/pubmed/17367596?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

While light and/or noise doesn't necessarily trigger all clusterheads, most clusterheads are light and noise sensitive to some degree during a cycle.

Quote:

Cephalalgia. 1998 Jun;18(5):250-6.

Quantitative evaluation of photophobia and phonophobia in cluster headache.

Vingen JV, Pareja JA, Stovner LJ

Department of Neurology, University Hospital of Trondheim, Norway.

In order to evaluate photophobia and phonophobia in cluster headache (CH), light and sound-induced discomfort and pain thresholds were measured quantitatively in 50 patients and 50 sex-matched and age-matched headache-free controls. During bout (i.e., during the active period with attacks), CH patients were more sensitive to light and sound than controls (p < 0.001). Outside bout they did not differ significantly from controls except for binaural stimulation. Patients were more photophobic and phonophobic during bout than in the remission period (p < or = 0.05). However, for those tested during bout, the sensitivity to light and sound was not related to the presence of pain during test, usual pain intensity, or pain laterality. In response to a questionnaire about their sensitivity, a significantly higher proportion of patients considered themselves sensitive during bout than outside (91% vs 46% for light [chi 2 = 5.9, p < 0.05] and 89% vs 49% for sound [chi 2 = 4.7, p < 0.05]). These results indicate that photophobia and phonophobia are important accompanying phenomena of cluster bouts.

PMID: 9673803

We are all different in what works, what doesn't and what, if anything, triggers us. I am light sensitive, but not so much noise sensitive. When driving down the road on a bright sunny day, sometimes the glare off a windshield or piece of chrome can seem like a laser beam pointed directly at my ch-side eye and can set off an attack. Never really bothers the other one. Noise doesn't bother me. Sometimes I put on my headphones and crank heavy metal on my little mp3 player during an attack as a distraction.

As has been said, go to a Headache Specialist.

Title: Re: whats in a name?
Post by Charlie on Feb 5^th, 2008, 9:27pm

Sounds to me like clusters and a bunch of crappy Neurologists. I know...I've had a few over the years.

I never found a trigger but during an attack I wanted to sit in the dark with my window open in winter. Dark, alone and cold are my thing.

Here is the technique that worked for me:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: whats in a name?
Post by hurtzdonut on Feb 6^th, 2008, 10:28am

Thanks All for the advice, about docs, methods, etc.. I keep hoping to find What started this in the first place..It seems to me that all these specialists do is put band aids on the condition, and dont really address the problem. As to light/sound , when hit, I too go into hiding as it seems to aggrevate the pain. Even if it started it..Sometimes wonder if the only thing that will solve this is, the big dirt sleep. Also getting tired of running around looking for docs who say they can "fix" me, and prescribe more and more damn drugs.. As for oxygen, dont really care to have it in the house,, with 3 gas furnaces,water heater, etc.. I get a little nervous with something thats that flammable. Again, another band aid. Oh, well, if wishes were horses, beggars could ride..

Title: Re: whats in a name?
Post by Gator on Feb 6^th, 2008, 10:50am

Okay, for now you are going to have to resolve that there is no "fix." No one knows for sure what causes it and there's no guarantee you would be able to change anything if they did. Life's a bitch, shit happens, get over it and get on with it. The best you can do right now is control and that requires treatment with an abortive to stop attacks in progress and a preventative to stop or lessen the attacks from coming. A good mental attitude is also of utmost importance in maintaining your sanity.

As to oxygen, there's no problem with having it in the house. I could see not keeping acetylene or hydrogen tanks in the house, but oxygen is not a flammable gas. I have a gas furnace, a gas stove and a wife and two sons that smoke like a frickin chimney. I have never had any problems or even second thoughts about it. As long as you treat it with just a little care (like making sure the tank can't tip over) and a little common sense (like not smoking while using it), oxygen is your best friend. Hell, I do more heavy breathing with my oxygen tank than with my wife.

Time to get your mind right for the fight and get armed with the right tools and the knowledge to use them and quit worrying about things that you have no control over.