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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New with questions 
        
(Message started by: Friend on Jan 31^st, 2005, 2:43pm)

Title: New with questions
Post by Friend on Jan 31^st, 2005, 2:43pm

Hi..Im Angela and have a few questions...I have been getting headaches for about 4 years now. I cant understand why I get them. I have seen a doctor and he said I suffer from migraines. He didnt say cluster headaches but they seem to be similar to some of the pain I have been reading about. However, mine just seems different. I have pain in the eye, cheek, head, and jaw. I think it may be something with TMJ. Has anyone been tested for that? Because when I went to some of the sites it says that it can cause those types of headaches. Does anyone get or have jaw pain with their headaches? I made an appt to see an oral specialist so he can check it out. I am hoping that is what the problem is because the pain is unbearable and I have children that need my attention and an infant that needs my 24 hour care and its really hard!! Any info would be appreciated. Thanks!!

Title: Re: New with questions
Post by Filbert on Jan 31^st, 2005, 2:52pm

Hi Angela welcome to the board! I would start by taking the cluster quiz on the left.That should give you a better idea. I hope for your sake it turns out that you don't have CH.

All the best Filbert.

Title: Re: New with questions
Post by nani on Jan 31^st, 2005, 3:14pm

Hi Angela...welcome and sorry you're having such a hard time. I have CH and TMJ and it can be debilitating. I have found that they often trigger and make each other worse. Go see an oral surgeon. He can help with TMJ if you have it. Go see a neurologist...he can help with CH. Read everything you can about both. For now, at least, I can tell you that for me...ice on the headache and moist heat on the jaw offered some relief. Pain free wishes to you, nani

Title: Re: New with questions
Post by Friend on Jan 31^st, 2005, 5:14pm

Well thanks for all the info...I have taken several tests and some say CH and another sinus and another TMJ so I am just as confused as the doctor. I do apply moist heat during the day on and off and hope I dont get a headache. Since I read the info on TMJ and did some preventive things such as moist heat I havent gotten one in 2 days but that could be because the CH is not present at this time. I am so tired of the pain but keep telling myself since I have dealt with it for years I can continue but when they come I cant take it!! Well I will keep ya'll updated. I wish you all pain free days and restful nights!!

Title: Re: New with questions
Post by AlienSpaceBabe on Jan 31^st, 2005, 5:19pm

on 01/31/05 at 17:14:03, Friend wrote:

I am so tired of the pain but keep telling myself since I have dealt with it for years I can continue but when they come I cant take it!!

You've made it this far, Angela... you can continue to handle it. We understand....

Welcome to the board.

As for whether or not it's TMJ - I can tell the difference between TMJ-related headaches and CH shadows. An appointment with an oral surgeon is a good idea - there's a lot they can do these days including making a night splint. And, as nani said, going to see a neurologist would be a good idea - it will help you get a proper diagnosis.

Lizzie

Title: Re: New with questions
Post by Friend on Jan 31^st, 2005, 5:24pm

I dont know what you mean when you say shadows? Do you mean you see something? When you have this cluster headache do you have jaw pain?

Title: Re: New with questions
Post by AlienSpaceBabe on Jan 31^st, 2005, 5:49pm

Shadows are like... CHs that don't quite hit... it's like the beginning of them. They sometimes last most of the day and are like pesky gnats or something - irritating and tiring, but not very painful.

I don't usually get jaw pain during a CH... mostly cheekbone and eye area.

Hope this helps, Angela.

Lizzie

Title: Re: New with questions
Post by Friend on Jan 31^st, 2005, 5:59pm

I have never had a shadow feeling. But everytime I get a headache I have the jaw pain so that is what make me think its TMJ or maybe its just wishful thinking because I believe TMJ can be corrected.

Title: Re: New with questions
Post by lionsound on Feb 1^st, 2005, 9:59am

Hi Angela,
You sound really frustrated and I don't blame you. I'm a mom too...I understand how hard it is to have pain and care for others. Remember that your kids love you no matter what.

I have Migraines and CH and some ice pick type headache, and other health issues as well. I don't have TMJ, but I know how frustrating it is to try and get everything sorted out.

It is important that you continue to try though, because it will help your treatment and your peace of mind too.

try to get an appt with a neuro, if you can...and the other specialists as well. And please let us know what happens.

Be well,
lionsound

Title: Re: New with questions
Post by floridian on Feb 1^st, 2005, 11:41am

Occasionally, the cluster pain creeps down a nerve into my jaw. Others have reported the same. That does not necessarily mean that someone has TMJ (though they could).

Its common that people with CH get diagnosed with TMJ or sinus problems before someone recognizes that there is something more.

Sinus and TMJ can co-exist with clusters, and they probably aggravate or trigger clusters in some of us. If you do have TMJ or sinus problems, it is worth dealing with those. It may or may not help with the clusters - no guarantees.

For TMJ, check out hot packs and various relaxation/range of motion exercises before you think about surgery. Also, something like glucosamine or MSM may help the connective tissue there.

Title: Re: New with questions
Post by sandie99 on Feb 1^st, 2005, 1:52pm

Hi Angela...

Welcome aboard! I hope that you don't have CH... I have both CH and migraine and it's not fun. I have noticed that when I've been to the dentist, I get easily CH. I had lots of attacks - bad ones - after my wisdon tooth was removed. I've read that often CH is mistaken to be solely related to dental problems.

PFdays,
Sandie

Title: Re: New with questions
Post by Friend on Feb 1^st, 2005, 3:03pm

Well thanks for all the advice!! I dont know why you all have to go through this. I keep trying to make sense of this and wonder how there could be such a headache. These are my symptoms I have eye pain, cheek, jaw pain on one side and that nostril drains. I do clench my teeth and that is why I guess they think TMJ related. All I know is that I want this problem diagnosed so I can get some relief. So those with TMJ do you have all that pain and those with CH do you have all that pain? Any info is appreciated. I just wish you all didnt have to go through this because it really blows!!

Title: Re: New with questions
Post by myfreaknhead on Feb 1^st, 2005, 8:52pm

on 02/01/05 at 15:03:49, Friend wrote:

So those with TMJ do you have all that pain and those with CH do you have all that pain? Any info is appreciated. I just wish you all didnt have to go through this because it really blows!!

Hi Angela,

I have both TMJ and CH (cluster-tic variety) and because of the TMJ it took years for a proper diagnosis on the CH. For nearly 10 years, my pain was blamed on the TMJ, and I spent thousands of $$ on useless dental treatments, meds and appliances. Finally I found an oral surgeon who LISTENED to my description of my "TMJ attacks" and told me there's no way in hell TMJ hurts *that bad. He referred me to a Neuro and the rest is history.

So my advice is to read up on the pain associated with both disorders, and get some medical evaluations. I hope you don't have CH, but good luck to you either way. I know how hard it is to do the Mom thing in such horrible pain. Hang in there :)

~Teri

Title: Re: New with questions
Post by Friend on Feb 2^nd, 2005, 4:05pm

Hi Teri and thanks for the info. I found someone in my area who also suffered from migraines and said she started to take vitamins like mag., b2 (b complex) and additional b12 and never got another. So I took a double dose last night and was not woken up with a headache. I dont know if its because I was free for a day or if the cycle is over or if the vitamins worked. I was actually able to get up with my infant and not be in pain. It was great. I have an appt with the oral tomorrow and then neuro on Feb 15th. They wanted me to wait till April (can you believe that). I told them no no no I want something sooner!! Im sorry that you suffer so much pain with both CH and TMJ. I was reading all the info on both and it seems that I have CH but still want to be checked for TMJ. Well I wish you the best!! Angela

Title: Re: New with questions
Post by Friend on Feb 4^th, 2005, 9:29am

Well I went and they said its not TMJ so I dont know if that is good or bad. I am taking a bunch of vitamins and didnt have one for 2 days but last night I got one that wasnt as bad. So I dont know if they make them less intense but I dont want them at all. I also had an MRI and sinus x-ray and all is ok there..so I have nuero appt on Feb 15. We will see what he has to say. I just have a few more questions. Does anyone know of CH just going away? Does everyone find meds or treatment that works? I only get them like 2 months a year and last year didnt get any...can that change to never gettting a break? How do people work and live life not knowing when they will start?? Thanks for all your help!! Angela

Title: Re: New with questions
Post by EmpressJMB on Feb 4^th, 2005, 10:34am

Hi Angela. So it's not TMJ? I hope it isn't CH either but I noticed you mentioned you weren't woken up with a headache the other night. Is that when most were coming? When in cycle, I get a CH every 1 1/2 hours during the night. The worst part for me was not knowing WHAT the headaches were. Now it's just the fear of WHEN they will come. You learn to live with it. It won't kill you and there are treatments available once you know what it is. Keep searching and don't give up. (And don't let any Dr. tell you women don't get CH). If your headaches come at night, try taking 6 mg of melatonin before bed. It is OTC. I used to get jaw pain and don't any more. Who knows why? Maybe because I'm not so tense about it as I used to be. Now I know that they will go away, they have a beginning and an end. Take as much info with you as you can to the neurologist, some know about CH, some don't. Chances are they will send you for an MRI to rule out other possible explainations. There are many possibilities why your head hurts. Let us know how it works out with the neuro. I have 2 little boys so I know how hard it is to function between the HA's and the exhaustion that follows. Best of Luck! Janet

Title: Re: New with questions
Post by Friend on Feb 4^th, 2005, 2:49pm

Janet, Yes the headaches come mainly at night. Usually at like 3am and 5am. They usually last from 10 mins to 1 hr. They seem to be less intense with the vitamins but still hurt. I will try the melatonin, I hope it works. My family doc says its migraines and gave me pill form imatrix (spelling) and vicoden. Neither seem to help because its over before the pills kick in and then I feel more like crap because of meds. I just want some type of meds that work so I can start to live a semi-normal life. I normally get them starting in like Dec. but I was pregnant in Dec and then Jan 1st when I delivered they came within a few days. I didnt get any last year so I thought it was over. Do you think they can ever go away? They really put a strain on you and your family. How can they give you meds or test you if your cycle is over? Thanks for your response and im sorry you have CH. Angela

Title: Re: New with questions
Post by EmpressJMB on Feb 5^th, 2005, 2:02pm

Hey Angela! Imitrix pills don't work fast enough on CH so most use the stat dose which is injected at the first twinge. I've never used Vicoden. Yes, this condition can go away. It can also go away for many years and then return which is what happened to me. As far as I know, there is no way to tell when a cycle is over other than "wait and see". Anyway, I know you want relief, but you need to wait until you see the neuro and get a diagnosis. You only have just over a week until your appt. right? In the mean time, try the Melatonin, ice packs, hot showers, drink lots of water. Let us know what happens. Janet [smiley=hug.gif]

ps-You have a New Years baby?!

Title: Re: New with questions
Post by Redd715 on Feb 5^th, 2005, 4:31pm

Friend...

If you haven't yet..take the cluster quiz over on the left hand side

<<<<right overe there.....fourth button down.

I've gone threw mis diagnosis after mis diagnosis for years. Had braces and splint for TMJ...but the HA's just kept coming. Allergies were diagnosed too saying sever allery to mold, and was scripted every allergy med and nasal spray there was...still got the HA's.

Please read and print out the pertanant info here and take it with to the Neuro along with the results of that quiz. From there....if you have CH....welcome home...

Title: Re: New with questions
Post by Friend on Feb 5^th, 2005, 8:21pm

Yes, a new years baby...and that was nothing compared to these damn headaches. I got one today and it was during the day. I dont know why its happening during the day when they normally came at night. I did get the melatonin and I am going to take that tonight. What happens if I start to take it then stop will they come instanlt? Well that is good news that they can go away forever. I'm sorry that yours came back. Mine went away for abt a year and then came back. You all are great and really supportive and all the info on this site has really helped me...im very greatful!! Yes, I have taken the cluster quiz and it said yes...so now the nuero on the 15th. Thanks again!! Angela ;)

Title: Re: New with questions
Post by dannyboy on Feb 6^th, 2005, 5:05am

Ode to Peripheral Nociceptive Inputs

Some say Clusters
have a center
located in the brain

Some say Clusters
can be a circle
of electric current pain

Some say Clusters'
'brain epicenter' is stimulated
by 'electrical' (neural) inputs from other structures of the head face and neck, like the TN, which services the face, for example.

Some say the 'cluster epicenter' in the brain and the 'electrical' inputs via the TN and other nerve systems of the head face and neck, form parts of this circle.

This may be the reason that by stopping one or another of these inputs from firing impulses at the 'cluster epicenter', a cycle can sometimes be aborted . Nerve block injections which interrupt cluster cycles in some instances, may be an example of this theory at work.

the theory Friend, may be one way of explaining why the TMJ and the Clusters may seem to aggravate each other. Or why a sinus condition and clusters may seem to aggravate each other. Or why some sufferers may find temporary relief from ice or heat packs

And it provides one possible explanation of why an overlap has been recognised between Clusters and Trigeminal Neuralgia in the last couple of years, where there was strong opposition to such suggestions in the past.

Bear in mind that no suggestion was made (or accepted) that the TN and Cluster conditions are the same. Only that there is a group of people in whom the symptoms overlap each other significantly, making the two conditions difficult to separate in those particular patients. This has resulted in an additional classification. What was it called again? Doc Tom from Munich has some material on it.

The idea of the 'cluster epicenter' being aggravated by peripheral inputs, still allows expressly for those Cluster headache sufferers, perhaps in the vast majority, who will experience no relief what so ever from stopping or interrupting these impulses from peripheral structures. In these unfortunate souls, that central 'sensitivity' in the brain is just too great for any change in impulses from peripheral structures to make any difference at all.

The theory of course doesn't explain the clusters themselves at all either, because with out that 'cluster epicenter' in the brain, no-one would suffer with Clusters no matter what impulses where being sent along the TN or other nerve structures.

Given that I don't suffer with clusters myself, it also annoys me no end, that the theory also fails dismally to offer any explanation as to what that white stuff in bird shit may be. Which is the chief area of my research.

But I seem to have gone off track with my song here

I thought of another section Deej, a flirting section, you know, a pick up chicks section, for singles and adulterers like me... c'mon man, I'll promise to visit more often

Good grief

Title: Re: New with questions
Post by Friend on Feb 7^th, 2005, 9:26am

Well its 2 days on the vitamins and melatonin and no headache. So maybe it worked. I hope thats all I need to do to make them gone. I wish it was a processed that could be fixed because I just keep waiting for it to happen and dont want to do anything because im afraid of it just happening, like when i took my daughter for a haircut it happened and i felt like crap because we had to go to Burger King to get ice and then sit a parking lot. Its just something aweful because i never know when it will happen next. Wish you all well!! Angela

Title: Re: New with questions
Post by nani on Feb 7^th, 2005, 9:39am

I know what you mean. My kids and I have spent many hours in the car waiting for a CH to pass. I bought some of those first aid cold packs that get cold when you break them. So I could stop having to go to restaurants for ice. I keep some in the vehicles at all times.

Title: Re: New with questions
Post by cherylc on Feb 7^th, 2005, 5:52pm

Hi Angela. Congratulations on the little one. Clusters are hard enough to deal with, and evener harder when you have an infant to care for. I've been there with all 4 of my babies. My latest cluster hit about a week ago and I have returned to this site and found so much more information and help. Have you tried oxygen? I have found it really helpful . I went to my doctor with all the info I found here and got the prescription I needed. I am going to try Melatonin tonight to see if it helps my sleep. Let me know how you are doing with it.
Cheryl

Title: Re: New with questions
Post by Friend on Feb 8^th, 2005, 2:42pm

Hi Cheryl..thanks...he has been a joy as well as lots of work!! My aunt who is an ER nurse said that some do come in and they give them a shot of something...i dont remember what and O2 and it most of the time works. So my father is on O2 for breathing and he gave me a take but i dont think it worked. Its only the kind that goes in your nose so maybe i need a mask for it to work. When i was reading the different posts they all said they use a mask. I am going to the doctor on the 15th so i am going to be sure to request it and all have all the cluster headache info with me. I am still taking all the vitamins and melatonin but did get a headache which hurt but not as bad as usual. I applied ice and it was gone in about 20 mins. If they come as they have been in the past week then I can deal with it, i guess. It just sucks when i have one and he wants to eat or needs me. I try to feed him and hold ice on my head. I wish you all well...Angela

Title: Re: New with questions
Post by Boyce on Feb 9^th, 2005, 10:01am

on 02/08/05 at 14:42:33, Friend wrote:

Angela....

10+ lpm and a non-rebreather mask is what you need.....don't let them give you nasal cannules or a regulator less than 10 lpm.....

--Boyce

Title: Re: New with questions
Post by Friend on Feb 10^th, 2005, 4:17pm

Thanks for the info Boyce!! You all are so helpful...atleast I know there are people out there who could relate because I thought I was going nuts!! I still dont understand how something like this could be happening and dont understand how they can clone animals but cant figure out a headache problem.

Title: Re: New with questions
Post by dannyboy on Feb 25^th, 2005, 2:01am

No money in figuring out headache problems

Sorry

Not Cluster's anyway... too few Cluster suffers to justify propper research expenditure

Now if they could clone me a new pair of lungs on the other hand, I'd start smoking again!

All you've got is each other, and you gotto figure it out yourselves.

Bummer.

Now get of your bummers and go figure something!

Title: Re: New with questions
Post by Margi on Feb 25^th, 2005, 9:57am

Dannyboy! Your pearls of wisdom have been missed around here.

I think this is the first post of yours I've agreed with 100%. Some, maybe 30%, but most of them maxed out around 5%.

;)

Title: Re: New with questions
Post by Lost_in_cluster on Feb 25^th, 2005, 11:25am

There is also a Disease of the cranial nerves Called Trigeminal Neuralgia... Signs and sympt. are excruciating, sharp, shooting, piercing, burning, jabbing pain. Sec. to min. between bursts of pain.
Does it bother you too talk , smile, eat, washing face, or brushing teeth?
Unilateral???
Meds...amitriptyline,Dilantin, baclofen, diazepam... just to name a few. Then again if non of these jump out then maybe it is TMJ...
Good luck with your diagnosis. Wishing you PF days soon. Hang in there

Title: Re: New with questions
Post by dannyboy on Mar 2^nd, 2005, 7:48am

Hey Margi, if you consider the fact that you've always been a bit of a fringe personality with wayout views... I'd say those percentages ain't bad!

how do you do those smiley winky things again?!

Wait, stop, what was I thinking? All self respecting Den-wannabes have a code of honour...

Title: Re: New with questions
Post by BobG on Mar 2^nd, 2005, 9:51am

Hey Margi ;)

Hi dannyboy. ;;D

Title: Re: New with questions
Post by Margi on Mar 2^nd, 2005, 10:24am

LOL Dannyboy - I'm gonna tell Den you're secretly a smiley wannabe.

[smiley=lick.gif]

Title: Re: New with questions
Post by jokrs2 on Mar 3^rd, 2005, 2:47am

Hi Angela. First of all welcome and sorry to hear about your pain. I am in somewhat the same boat as Nani and her recommendations are great. I have TMJ as well. Facial, Jaw, cheek bones, seems like it's everywhere at times. For the TMJ I put my tongue against the roof of my mouth, makes it hard to grit the teeth and kinda forces the jaw into a relaxed position, and moist heat and/or ice if there is any swelling. I can't seem to sleep with a night guard for my teeth, but Bruxism, (do you grit or grind your teeth, some people do it while they are asleep and don't even know it), might be involved too. Good luck with your situation. Joe

Title: Re: New with questions
Post by TonyG1 on Mar 3^rd, 2005, 8:49pm

on 01/31/05 at 17:14:03, Friend wrote:

I am so tired of the pain but keep telling myself since I have dealt with it for years I can continue but when they come I cant take it!!

Hi and welcome to the board Angela! Sorry you have to be here for the sake of the beast but if you have to be somewhere for that reason, you are in good company. Just a comment on the quote, I do the same thing EVERY cycle ... tell myself I can deal, have my sleep (battle) plan ready, and then BAM I'm reduced to whatever we become during an attack. [smiley=JAW_DROP.gif] So I totally understand what you're saying. Good luck to you and I wish you many PFDANs!

Tony

Title: Re: New with questions
Post by Cooked Brain on Mar 4^th, 2005, 8:27am

on 02/01/05 at 15:03:49, Friend wrote:

and those with CH do you have all that pain?

oh yeah, that's the pain!

sorry you had to find this place friend, but glad you did...

Title: Re: New with questions
Post by Friend on Mar 11^th, 2005, 12:24am

Well it is CH's...They put me on an elavil (spelling?). I cant take it though it makes me so tired and I have to be alert to care for my newborn. I am out of the cycle but am thinking of the all natural method that I have been hearing about but am a little nervous about that. Well thanks for all your help and wish you all pain free days!! You are all a great help...now I just need a stress site where I can vent as well!!