Most Pain deep inside cheek upper teeth! Throbbing pain. Possible Misdiagnosis? Opinions greatly Appreciated!

[Flwaters]

Hello I'm new here.   I was diagnosed by neurologist with  cluster headache / migraine, a year-and-a-half ago after having been to dentist, ear nose and throat doctor, and Oral Maxillofacial.  The only medication that touches this pain without any side effects is Relpax/Eletriptan.  What I don't understand is why is most of my pain, about 80 to 90% only located deep inside my cheek right above my upper back tooth?  Is this symptom  part of Cluster pain??  Not sure if this is common or not?  Or if it even is part of cluster headache pain??  I also just made an appt. with  a Neurosurgeon today. 

[spiny]

Hi there Flwaters! Welcome.

Many have pain in the maxillary area when they are getting hit. It is not usually the main location of their pain though. That is one branch of the Trigeminal Nerve which tends to go bonkers with CH.

Have you been put on any meds like Verapamil? That is the usual go to med for CH. Have you been offered O2? That is the main abortive for CH. You need it!!!! I hope the neurosurgeon helps. Is there a reason you are changing doctors? Or a reason for seeing a surgeon?  I am a bit lost.

[jon019]

Welcome Flwaters,

Yup...totally familiar symptoms for many a clusterhead....that's essentially the same experience I had for the entire first year of CH. Kept going to my dentist and demanding he remove "that" tooth....he wouldn't do it..."nothing wrong with it". Eventually he got frustrated...researched...and diagnosed CH himself...prince of a man...……..

Best

Jon

 

 

[Flwaters]

3 hours ago, spiny said:

Hi there Flwaters! Welcome.

Many have pain in the maxillary area when they are getting hit. It is not usually the main location of their pain though. That is one branch of the Trigeminal Nerve which tends to go bonkers with CH.

Have you been put on any meds like Verapamil? That is the usual go to med for CH. Have you been offered O2? That is the main abortive for CH. You need it!!!! I hope the neurosurgeon helps. Is there a reason you are changing doctors? Or a reason for seeing a surgeon?  I am a bit lost.

Hi there!,  I want to see a neurosurgeon because I want to find other treatment, surgery, etc.  I have been living with this pain for 5 years already....

[Flwaters]

2 hours ago, jon019 said:

Welcome Flwaters,

Yup...totally familiar symptoms for many a clusterhead....that's essentially the same experience I had for the entire first year of CH. Kept going to my dentist and demanding he remove "that" tooth....he wouldn't do it..."nothing wrong with it". Eventually he got frustrated...researched...and diagnosed CH himself...prince of a man...……..

Best

Jon

 

 

Hi Jon,  well at least you only had it for 1 year,  your first.   I've been having it for 5 years straight.  Which is why I thought I've been misdiagnosed and that maybe I should go back to  an ENT,   my nose is always stuffed up clogged up and I can't help but to keep thinking that it's a sinus related issue

[Flwaters]

3 hours ago, spiny said:

Hi there Flwaters! Welcome.

Many have pain in the maxillary area when they are getting hit. It is not usually the main location of their pain though. That is one branch of the Trigeminal Nerve which tends to go bonkers with CH.

Have you been put on any meds like Verapamil? That is the usual go to med for CH. Have you been offered O2? That is the main abortive for CH. You need it!!!! I hope the neurosurgeon helps. Is there a reason you are changing doctors? Or a reason for seeing a surgeon?  I am a bit lost.

Spiny,  believe me I am trying to get the oxygen!  But the office staff at the doctor's office never want to do their job and call the insurance company's so I've had to be on the phone all day today and I have to call them tomorrow and tell them what to do so that I can get an authorization.

[jon019]

51 minutes ago, Flwaters said:

Hi Jon,  well at least you only had it for 1 year,  your first.   I've been having it for 5 years straight.  Which is why I thought I've been misdiagnosed and that maybe I should go back to  an ENT,   my nose is always stuffed up clogged up and I can't help but to keep thinking that it's a sinus related issue

Hiya Fl...oh dear...sadly, no "at least" involved...….THAT was the start.....it wasn't the end...that particular pain has never gone away (in cycle)….it's been, well, years. We here want to make that "old news"...we'll do our best for family...like YOU!

Part of the "old news" for me included: Oxygen, verapamil, Zomig, Energy drinks, a calmness version of meditation, and vitamin D3 regimen....YMMV...there's other options right chere on THIS site too. You are in the right place...…………...

Best

Jon

 

 

[jon019]

Oh dang!...forgot to add....allergies can add to the "demon's dance" (and many MIS-diagnosed w/sinus issues (me) e.g.)....many a clusterhead has found help with old school antihistamines like benadryl…."BATCH" has many threads which discuss this...just search his name....you won't be sorrrrrrrry ………..

Best

So Late...….Jon

[Flwaters]

[xxx]

FlWater,

Saddly, there are too many CHers who were looking for relief from the terrible pain that submitted to surgical options and/or removal of teeth only to find the pain was not caused by a bad tooth or sinus infection.  It was just cluster headache.  The bottom line is try the first line cluster headache interventions before resorting to more invasive treatments.  The best advice is see a neurologist or headache specialist with experience treating patients with cluster headache. 

The standards of care recommended treatments for CH prescribed by the top neurologists and headache specialists familiar and experienced in treating patients with CH include a short prednisone taper, and verapamil as preventatives and oxygen therapy followed by triptans (subcutaneous injections or nasal spray) as cluster headache abortives.  If you're prescribed anything else, be sure to ask for the medical evidence on efficacy and safety of the Rx... I'll also add that since December of 2010, the vitamin D3 regimen has been found to be even more effective than verapamil in preventing CH and the terrible pain.  Busting with psilocybin mushrooms is also effective for many CHers. There are many experts here who will help you if you go this route.

Take care,

V/R, Batch

[Flwaters]

What do u know about botox?  I read most reviews are bad.

[Flwaters]

How many milligrams of the fish oil daily?

[FunTimes]

1000 to 2400 mg a day of the fish oil is what I think is recommended. 

[spiny]

Yep. The standard Fish Oil at the grocery or pharmacy. I suggest the 'burpless' variety. Fish burps suck!

Botox is very helpful for some, some migraine suffers. From my reading, it is not so effective for CH and the doctor administering it needs to know how to do that for Clusters, not just Migraines.

Insurance can suck when you are trying to get O2. You likely will need the help of your doc. It can be a fight, but you can win that fight.

I strongly suggest you start the D3 Regimen. It is easy, over the counter, and a huge help for many.

What preventative were you given by the neuro? None? Did he just prescribe Trex and not a Pred Taper or Verapamil? Yes, Trex works. It is also bad for you over the long haul. And if you are getting hit 3-5 times a day, which two do you treat with the Trex? Using that med alone leaves you in a bad position. Remember - two shots in 24 hours max. There is a way to split the injections that can help. You are getting injections and not nasal spray or pills, right?

[Flwaters]

I finally got authorization for O2.  I was sleeping today and missed call from O2 Co.  Already started D3 regimen 10,000 IU a day; should I take more? Tomorrow going shopping for fish oil. I tried amitriptyline as preventive a long time ago and I couldn't do it, the higher that  milligrams the worse the adverse side effects, I stopped at 30 milligrams. No, have never tried Trex.  I am chronic and the only prescription  drug that works for me to stop the pain is Relpax/Eletriptan, very expensive even with insurance ( $12.88 per one pill) never tried injections nor have I been offered them by any neuro.

[Flwaters]

5 hours ago, spiny said:

Yep. The standard Fish Oil at the grocery or pharmacy. I suggest the 'burpless' variety. Fish burps suck!

Botox is very helpful for some, some migraine suffers. From my reading, it is not so effective for CH and the doctor administering it needs to know how to do that for Clusters, not just Migraines.

Insurance can suck when you are trying to get O2. You likely will need the help of your doc. It can be a fight, but you can win that fight.

I strongly suggest you start the D3 Regimen. It is easy, over the counter, and a huge help for many.

What preventative were you given by the neuro? None? Did he just prescribe Trex and not a Pred Taper or Verapamil? Yes, Trex works. It is also bad for you over the long haul. And if you are getting hit 3-5 times a day, which two do you treat with the Trex? Using that med alone leaves you in a bad position. Remember - two shots in 24 hours max. There is a way to split the injections that can help. You are getting injections and not nasal spray or pills, right?

I have also never tried or been offered pred taper. The neuro I had, was the worst.   

[spiny]

I agree that the nuero was not helpful.

Relpax/Eletriptan is a triptan - the same as Imitrex. You were given that in pill form I suspect as it is specifically for migraines. It is not for CH according Pfizer and pills are too slow acting for a cluster. Triptans for clusters are normally in  shot form. With the old style diagnosis of cluster/migraine, he is treating you for migraines. Pretty sucky.

It is very standard for a neuro to start you with a Prednisone Taper Pack, prescribe Verapamil and often prescribe Imitrex or another triptan in nasal spray or shot form. The spray works fast enough for some. The Pred provides quick relief ( a day) while the Verap builds up in your system. Your dosage of  verapamil may wind up being quite high. That is not unusual for a CHer.

Amitriptyline is Elavil - also mainly for migraines. Never worked for me either. It is an anti-depressant.

 

Yea for O2!! Is it in tank form with a non-rebreather mask? concentrators do not work. There is info in the Clusterbuster Files on how to use it for the best relief. Most doctors do not tell you how to use it!

 

Hopefully the new guy will do better. Please ask for an MRI of your head to exclude any other problems that may be there. A scan is very important to eliminate that other bad stuff.

As for the D3, please read the D3 Regimen in the CLusterbuster Files section of the board. It includes a few other vitamins needed for the full regimen. You can also contact Batch directly. He is very helpful and give you the best D3 loading advice. It is best to get a blood test for your D3 levels when you start if possible. Not mandatory, but will give you a better idea of how much loading to start with.

ATB

[Flwaters]

JUST GOT OFF PHONE WITH OXYGEN CO.  I WAS WRONG!!! HUMANA MY INS. CO. WON'T AUTHORIZE UNLESS IT IS RESPIRATORY!!!  

[Flwaters]

I already had an MRI and a cat-scan of my brain and everything checked out fine.

[Tiaan]

Hi Flwaters, so sorry you had to join this group, but you are in good hands now. These folks gave me my life back. Do a search on this forum for “welding O2”. There are a bunch of us, including myself, that went that route for various reasons. Good luck to you. 

[CHfather]

2 hours ago, Flwaters said:

JUST GOT OFF PHONE WITH OXYGEN CO.  I WAS WRONG!!! HUMANA MY INS. CO. WON'T AUTHORIZE UNLESS IT IS RESPIRATORY!!!  

I don't think they can legally refuse to provide it for that reason. O2 is a medically recommended and clinically proven treatment for CH.  Call Humana.  The process of fighting with insurers isn't fun, but I'd at least give it a serious shot.  I'd check with your doctor's office, too. People have said that the battle seems particularly difficult in some states (Florida and New York come to mind). That might be a result of how O2 providers and insurance companies are regulated in some states -- I don't know.  If you have a prescription, you ought to be able to get medical O2 and the related equipment (regulator and mask) by self-paying, but that might be real expensive. Another thing I don't know. 

As Tiaan said, you can take the alternative route as many have done and use welding O2 (which might even be less expensive in the long run, although there's more hassle because you have to return the tanks for refills yourself rather than having the a medical O2 supplier bring you the new ones and take away the used ones).  It's hard for many people to appreciate how essential O2 is to managing CH, so either way, please don't give up.  The welding O2 route is straightforward -- buy or rent tanks from a welding supply company (look it up online), and buy your regulator and mask online.  If you decide to do that, let us know, and we'll tell you more. 

[jon019]

...had the same problem with multiple ins companies...it's almost an automatic denial to make you go away...DON'T! 

1) appeal...in writing...and phone (save copies, record all dates and names of who you talked to). If they say O2 is not approved for CH...they are WRONG...and practicing medicine w/o a license...call 'em on it....they hate that (be prepared to go to state ins agency regulators). Treat it as a game...play to win...what you learn the first time is REALLY useful and fun the next time (at least 5 times for me).

2) Finding a headache specialist neuro is CRITICAL for a number of reasons....but one really important one is to rely on this person for a "letter of medical necessity" which basically states the reason for this medically accepted treatment for YOU. I had one written for me that was almost too hot to hold...the Doc was pissed and effective...the O2 (and triptans) got approved really fast!

3) If you get your insurance through your employer...get to know the insurance broker who sold the policy to your company. This person is the actual customer of the insurance company ….they really don't want to talk to you except to say "go away"... but they WILL listen to this person. Your HR dept SHOULD be willing and able to facilitate this. Besides the necessity letter this was the most effective strategy for me....

4) be willing to pay out of pocket....it's that important a treatment...life altering actually. W/o O2 I might have been dead or insane. Got to know the manager of the O2 shop....so you are a person to them not just another name in a file. Picked up tanks myself...saving them delivery costs. I bought my own regulators, mask and tank caddy online...really cheaply too. E-tank cost was $10-14 ea over time. M tanks are about 2 1/2 times bigger...last much longer....so less trips to the oxy shop...might be cheaper per liter...can't remember. You WILL need a prescription or they won't even talk to you...……..

5) CHfather is absolutely correct...welding O2 just as good and a great option.... and once the logistics are figured out it is likely cheaper. Like he says...there are folks here who can walk you thru....

Best

Jon

[FunTimes]

I found that getting the script for the o2 from the doctor was only half the battle. The o2 company's around me either wanted charge me a tun of money per tanks monthly rental or said they do not service Cluster headache patients. I finally found one place that I could talk to and they worked with me, we found that it would cost me less money to pay out of pocket for O2 then it would if insurance paid for it. I get 2 m60 tanks filled 3 times a month for 90 bucks and I have 4 E tanks that cost 15 each fill. they come to my house and swap the tanks out. It took about a month of calling and fighting with different company's in my area but I just googled the list of places and started from the top. I drove and picked up my own tanks from a few places and tried to swap them out the next day and they upped the price because I was causing to much paperwork, I had one place that would not answer the phone when I called them after a few tank refills. You will come up against all kinds of things but if you just keep calling or have someone you know at a doctors office call for and with you you will fins someone that will work with you.