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Elrik138

My Face Hurts

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This time it started on October 17th, 2018. I went to the ER on the 27th. I was told that these are cluster headaches by the doctor working at the time. In 2016 I was diagnosed with Trigeminal Neuralgia, then in December 2017 Optic Neuritis in the Left Eye. Blindness lasted 3 days peripheral vision still has not returned. I have had chronic migraines since I was 8 years old. Always through my left eye. This "Cluster Headache" is on the left upper side of my head encompassing my left eye. From my temple to the bridge of my nose than straight up through my hairline than back down the side to my temple. My eye and temple have it the worst. Always my @#$%# left eye. Anyway, at the ER they were able to kill it with 100% oxygen and a three-drug mixture all I remember is that Benadryl was one of the three. I slept for about an hour the nurse woke me up put a steroid in my IV which almost immediately brought back the headache. But they released me anyway. I already have neuralgia which I am maxed out on gabapentin for, so my doctor not knowing what else to do has just added nortriptyline. I am also on carbamazepine for the TN I called my Neurologist and he upped that. I have had this sort of thing happen several times before lasting up to 30 days. I usually take a lot of Imitrex for it hoping it will help but it does not. Nor does the shots of Toradol from the Dr. It gives me an hour or two pain-free in the morning BUT, only if I am able to sleep. Then it kicks in, in its full glory. My face really hurts bad right now and I don't know what to do. The beginning of next week I see both my family Dr. and my Neurologist, as that was the soonest I could be seen. I can't live with this I don't know if I can make it till next week.

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I'm sorry you are suffering so much. If you have CH, there are lots of things you will be able to do to manage the pain. Since I'm puzzled by several things here, I'm not committed to a CH diagnosis, but if you do have CH, a prescription for oxygen, is what you want first -- particularly since it helped you in the hospital.   Oxygen is the #1 game-change and indeed life-saver for people with CH.  I'm guessing when you say you "take a lot of Imitrex" that it must be pills.  Those pills don't work with CH.  Injectable Imitrex typically does work, and sometimes an oral triptan will work.  [Edited to note that this should have said "sometimes a triptan nasal spray will work.] Gabapentin is often prescribed for CH, but it's a kind of secondary or tertiary option.  Usually gabapentin is prescribed for TN, and I don't know -- making it clear that I ain't no doctor -- what the additional anticonvulsant, carbamazepine, is adding.  Toradol generally won't work against CH pain. Corticosteroids can at least temporarily stop or significantly reduce CH pain (one of my puzzlements, given your hospital experience). If you google [goadsby treatment of cluster headache] you'll find a straightforward description of pharmaceutical CH treatments. 

Many people here would tell you that aside from oxygen, pharma and prescription meds are far from the best way to treat CH, although they can get you through a rough spot, which is probably what you need right now. The vitamin D3 regimen, energy drinks, busting, Benadryl, and a bunch of other things can help more with fewer or no side effects.  Given the cocktail you now are taking and the unclear (to me) CH diagnosis or possible multiple diagnoses, I'm reluctant to suggest anything except trying to get some kind of definitive diagnosis, demanding an O2 prescription, and perhaps getting a different pharma treatment plan.  You are not now receiving any kind of sensible first-line treatment for CH. I don't want to minimize what you're going through, but lots of people here have been where you are and come out the other side, so I'm hoping you will hang in there.

Edited by CHfather

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I have had chronic migraines since I was 8 I am now 48. Over the last 10 years, they have started hurting my face and started lasting 10-30 days. Yes, there are multiple diagnoses going on. February  26th, 2016 I was diagnosed with MS. In January 2018 Optic Neuritis. Somewhere in there the decided I have all over body Neuritis hence the gabapentin. Within the last 6 months Trigeminal Neuritis was diagnosed, and on October 27th, 2018 Cluster Headaches. The carbamazepine is for facial pain supposed to work with both TN and CH as CH hit the Trigeminal nerve. The nortriptyline is being added to the gabapentin as I take the FDA maximum allowed dose and it is becoming not enough.

The Imitrex is pill form. Morning and night I take Topamax to try and stop migraines from occurring. And Imitrex once I have one. Toradol usually knocks out a migraine that is Imitrex resistant. So this is not a long lasting migraine and it lasts way too long for TN. But 100% oxygen, Benadryl, plus whatever the other two drugs were knocked it right out. I did not come up with a Cluster Headache the Dr. at the ER did. He treated it as one and was successful until adding the steroid right before I was released. For an hour I was good.

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I would like CHfather said do whatever it take to get that prescription for high flow oxygen. Regardless if you have Cluster headaches or not it sounded like that did the trick in the ER. If you can abort a few headaches a day with the O2 and get off the other meds you may decrease some of the rebound headaches caused by the other medications you are now taking. 

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11 hours ago, CHfather said:

sometimes an oral triptan will work

I made this significant mistake in my earlier post.  I should have written sometimes a triptan nasal spray will work.  

You could probably contact the ER and find out what was in the three-drug cocktail, but I am guessing it was probably something like the Benadryl you mentioned plus Compazine, and Toradol.  Benadryl is helpful for CH, but it is not going to have quick results to abort an attack.  Compazine and Toradol are usually ineffective against CH.  I'm saying that O2 often knocks out a CH attack on its own.  One of our CH citizen scientists discovered that Benadryl taken as directed (I think that's 3 times a day at 25mg and 50mg at bedtime) will significantly affect CH.  Many people now add it to their treatments.   

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Hey Elrik,

You're likely vitamin D3 deficient and that deficiency contributes to the frequency, severity and duration of your migraine and cluster headache as well as your other related medical problems including MS.  See your PCP for the lab test of your serum 25(OH)D.  This is the first metabolite of vitamin D3 that's used to measure its status.  The normal reference range for this lab test is 30 to 100 ng/mL.  Migraineurs and CHers need to maintain their serum 25(OH)D ≥80 ng/mL.  That will require 10,000 IU/day vitamin D3 or higher.

You can find the anti-inflammatory regimen CH preventative treatment protocol with 10,000 IU/day vitamin D3 at the following link.  Be sure to take a copy to your PCP to discus when you ask for the 25(OH)D lab test.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Your MS Dx is a related story.  It's best you read up on the Coimbra protocol developed by Dr. Cicero Coimbra, MD in Brazil.  95% of is MS patients on this protocol are reporting a 95% complete remission.  The following link will take you to the Coimbra protocol

https://vitamindwiki.com/Interview+of+Dr.+Coimbra+-+Vitamin+D+protocol+for+Autoimmune+diseases+–+2016

There's also a Facebook MS group taking this protocol

https://vitamindwiki.com/Multiple+Sclerosis+Coimbra+Protocol++stories+on+Facebook

The Coimbra protocol is very similar to the anti-inflammatory regimen CH preventative treatment protocol with a couple major exceptions.  Where we suggest 10,000 IU/da vitamin D3 to prevent CH, Dr. Coimbra suggests 1000 IU of vitamin D3 per Kg of body weight/day.   A sleek rascal like me at 81 KG would need to take 81,000 IU/day vitamin D3 on the Coimbra protocol/

The Coimbra protocol calls for a complete avoidance of calcium rich foods and supplements.

You'll need to consult with a physician trained in the Coimbra protocol before starting it.  The following are physicians so trained.

Dr. Brian Lamkin DO
Address: 120 North Bryant Suite A9
Edmond, OK 73034
Phone: 405-285-4762 Fax: 405-285-4352
Website: http://www.lamkinclinic.com

Dr. Edward Les Cole, MD
Address: St. Petersburg Health & Wellness
2100 Dr. MLK Jr. St. N.
St. Petersburg, FL 33704
Phone: (727) 202-6807  Fax: (727) 498-6642
Website: http://www.stpetehw.com

Dr. Suzana Tanimoto, MD
Address: L 77  8th Street South
City: Naples, 34102, FL

Phone: (239) 325-2015

Take care and please keep us posted.

V/R, batch

Edited by Batch

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I have been Vitamin D deficient  for years. I am currently on 5,000 units of D3 a day. That seems to keep my D about normal. I ended up in the hospital being admitted for 3 days as they initially thought Optic Neuritis and I was given an IV dose of 500mg Solumedrol. But a Neurologist and his PA came into my room and changed the diagnosis back to cluster headaches. He also re-read my old brain MRI and said that he did not think that I had MS but that the lesions were made by migraines. I was given high doses of O2 and nasal Sumatriptan. For other reasons the nasal spray was a bad idea, tried to warn them about nasal sprays, but oh well. I ended up back in the ER two more times since then, both times they told me that it is also me Trigeminal Neuralgia acting up. I was told by all three visits that I should drop my current Neurologist in favor of the one who saw me in the hospital. 

So I have made an appointment with the hospital Neurologist. Even with just seeing him in the hospital and having a pending appointment he has already prescribed O2 and injectible Sumatriptan. My insurance would not pay for the tank wanting me to do some sort of trials is what the med supply said. But they are letting me rent the tank with my rental fee going towards purchase if I want it. Looking at the mask in your files they gave me the wrong type just a standard mask, and the regulator goes up to 10 then jumps to 15 and stops.

But I think that my cluster headaches are/were seasonal usually starting around October going for 1-2 months but I am now on my 3rd month and the O2 and the Sumatriptan injections are giving me a little relief, but not taking them away.

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Elrik138,

Does your mast have a bag on it below where the oxygen tube comes in?  Please post a picture and we'll make sure you're using the right stuff.  Also, on the regulator that's a pretty standard 15 LPM regulator.  You can buy a 25 LPM off amazon for pretty cheap.

PFW,

J

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Elrik,

5,000 IU/day vitamin D3 is fine for healthy adults...  That said, it is too low a dose for CHers with active bouts of CH.  10,000 IU/day has been the go to daily maintenance dose of vitamin D3 following a 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day for 12 days.

The following graphic illustrates the rational for this dosing schedule.

AFvZz5p.jpg

As you can see, the 12-Day loading schedule elevates serum 25(OH)D rapidly into the therapeutic range around 80 ng/mL where most CHers respond to this regimen.  At just 10,000 IU/day it could take 2 to 3 months to elevate serum 25(OH)D to 80 ng/mL.

Again you can pull down the anti-inflammatory regimen CH preventative treatment protocol at the following link.  Take a printed copy to your new neurologist to discuss.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Take care and please keep us posted.

V/R, Batch

 

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Would something else say flaxseed oil work in the place of fish oil (I am a vegetarian).   Also this from the page you linked to "The standards of care recommended treatments address the neurological symptoms of CH as a trigeminal autonomic cephalalgia (TAC) with neurogenic origins in the hypothalamus and manifestations in the trigeminal nerves." Could this affect say Trigeminal Neuralgia in the jaw? As this is the worse that it has been for that as well.

As far as the oxygen mask from what I have seen here looking at the files what they gave me is wrong. It is a basic mask, no re-breather. Looks just like what is pictured below.

s-l1000.jpg

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I am really trying to make sense of all this. I am having a hard time thinking at this point. Before at most the longest my headaches would go is a month or just over that. With this one, I am starting on my 3rd month. And it seems like thought and reason are going out the window. I have gone through the ER 4 times and to an Ophthalmologist once as well. I guess now I am closer to the new Neurologist who was the one to diagnose this correctly, the 18th is closer now. I just can no longer think right. So please bear that in mind when explaining things to me.

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Elrik',

As ThatHurtsMyHead had suspected, this is the wrong mask.  Non-rebreather, as you say, is what you want.  Your oxygen supplier should have one.  A basic one is about quite inexpensive at amazon. For example: https://www.amazon.com/Dealmed-Non-Rebreather-Oxygen-Mask-Adult/dp/B079HDP62H/ref=sr_1_3_a_it?ie=UTF8&qid=1544374018&sr=8-3&keywords=nonrebreather%2Boxygen%2Bmask&th=1   

There is probably a way to adapt your current mask, but I'm not clever enough to know what it would be.  This is a link to the mask made specifically for CH, which people have very good experiences with: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

With a tank and a regulator that goes to 15 as yours does, you should be able to get success with the right mask.

I know there are Omega-3 pills made for vegetarians.  It's possible that Batch has advice related to the most desirable EPA/DHA amounts and ratio.  In his post, Batch is saying that the 5,000IU/day of D3 you are/were taking is not enough to get your D level high enough, and even 10,000IU/day will take a long time. He's encouraging you to do the 50,000IU/day "loading" regimen (and to be sure you take all the other ingredients).

Jaw pain is not uncommon with CH.

It's slightly troubling to me that a sumatriptan injection doesn't stop an attack for you.  Maybe that happens with some people with CH, but I'm sure it's very rare.  Important information for your neurologist appointment.

Edited by CHfather

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The first time in October that I went to the ER, the doctor there suspected a cluster headache. I don't know everything that he gave me other than Zofran, Benadryl, and three other drugs in an IV solution, with high pressure o2. It was gone right until the nurse added a steroid, is what she said, then released me. That steroid brought it back a little. I was able to stay out of the hospital for about a month. When it got bad enough to return my face, eye and head were in pain. This time the doctor that I was assigned to decided that it was optic neuritis and gave me 500mg IV Solumedrol and admitted me. The next day a neurologist came in said that it was a cluster headache and did some med changes but gave me high pressure o2 and it killed it enough for me to go home. Now it is hitting me again but more temporal and my left eye is really affected. I get side by side vision. I just went to my ophthalmologist who looked at my eyes called it all good and told me that it was probably the cluster headache. It is now tha6t I am questioning the med change done by the neurologist. Stopping Nortriptyline (for facial pain), and instead having Verapamil which is some sort of blood pressure med. Maybe that is why I am having more facial pain and new types of visual disturbances? I guess I will find out next Tuesday when I am seen in office.

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Verapamil is standard preventive treatment for CH.  Usually people start pretty low and increase dosage (with heart monitoring). It usually has no effect at first, which is why people are sometimes given a course of steroids to ease the pain while the verapamil (hopefully) kicks in.  I know you said you think steroids made your condition worse, and I'm not doubting you, just saying that's the standard course.  Many people here have had relief from verapamil at high doses (using the immediate-release kind, not extended release), and many people here feel that verapamil was harmful to them in other ways.  Sometimes the dosage has to get up over 900mg/day before it becomes effective.

Nortriptyline is a tricyclic antidepressant.  It's sometimes prescribed for tension headaches, but is not any kind of standard therapy for CH.

I hope you get your O2 sorted out and that it helps, and that you get some clarity and appropriate treatment on Tuesday.

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I can't take the Verapamil. It was tanking my BP way too low, double vision (side by side) and woke up twice to what I had described to the doctor as convulsions. What I now believe that those were the tail ends of seizures from having my BP way too low. Also I couldn't stand to ride as a passenger in a car double vision and motion sickness. That all went away when I quit the Verapamil. My Wife used to be a CNA way back when, but she had trouble measuring my pulse one night.

 

The Nortriptyline wasn't for headaches at all, but for my facial pain. Trust me when I say there are times when I seriously don't know what is worse to have this headache or to have facial pain. When that flares I cannot even lay my head down on my pillow as it will cause the facial pain to spike so severely in pain. So I just stay up all night again.

 

I just had to refill my o2, an E tank. When I asked about the rebreather mask they flipped out saying that they would not give that mask to me unless the prescription said so, as they don't want to be responsible for killing me from a build up in the mask? Does any of that make sense?

 

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I’m not the only one that had vision problems. If I stay at 160mg per dose and spread it out by a couple of hrs before next dose and I was able to get rid of vision problems. But my BP is fine. 

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1 hour ago, Elrik138 said:

I just had to refill my o2, an E tank. When I asked about the rebreather mask they flipped out saying that they would not give that mask to me unless the prescription said so, as they don't want to be responsible for killing me from a build up in the mask? Does any of that make sense?

It's a NON-rebreather mask that you want, not a rebreather.  I have no idea whether something bad builds up in a rebreather mask, but nothing builds up in a non-rebreather.

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A professional, competent, PATIENT-oriented  oxygen supply service will NOT make a new patient's life even more miserable (just because they used the "wrong" terminology) by throwing out ridiculous comments like a rebreather mask will "kill you". A rebreather simply gives you a mix of O2 and room air....which won't work for CH....but lots of other valid uses for folks WITH a prescription for same. And which, BTW, will not kill THEM either!   Sounds like something a person or company in the wrong business would say.....instead of RESEARCHING what CH PATIENT requirements are...then providing THAT....and explaining away any confusion. Seems like you need to educate them...just like many a clusterhead has had to educate their treating Doc. We have to be our own best advocates...…………...

Best

Jon

PS If all ya got is the mask pictured above...tape over the holes so you are not getting any room air (slightly lift mask to exhale)....or just breath directly from the hose sans mask...

Edited by jon019

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The company that just took over for VA outpatient oxygen here is similar.  They won't do anything unless it's on a script from the VA.

It's cheap and easy to buy your own non rebreather masks off amazon.  I think someone posted a link recently that they were about $6 each for a basic mask.  Also, make sure you do as Jon above recommended.  Tape over or install one way disks (if you can) over the open holes on the mask.  

J

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I went to the neurologist. He agreed that in my case Verapamil won't work because of my particular blood pressure issues. He gave me a script for Indomethacin, upped my Topomax, and wrote for the Non-Rebreather mask. He said that I have CH and TN sending me for gamma knife to fix the TN. I really don't know why the med supply told me what they did that is why when I quoted them I put a question mark at the end. I think I can get credits on my taxes buying from the med supply vs Amazon not sure though. The price will depend on which way I go.

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Elrik,

I'm unsure if your doc doesn't know what he's doing or he's trying an experiment on you.  Indomethacin doesn't work on CH.  That's not opinion, just fact.  It does work on a similar condition called Hemicrania Continua.  Some doctors use a short script to see which condition the patient has.  If it works you don't have CH.  If it doesn't work, then likely it is CH.

https://en.wikipedia.org/wiki/Hemicrania_continua

If he says you definitely have CH and prescribed Indomethacin then he's not done his research.

J

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This recently updated article (September 2018) contains interesting information about indomethacin and CH.  http://www.medlink.com/article/indomethacin-responsive_headache_syndromes   The authors conclude, "All patients with strictly unilateral headache should receive an indomethacin trial."  Kind of makes sense (although they say that in cases when CH is responsive to indomethacin, larger doses for longer periods are required, so I'm not sure what the proper "indomethacin trial" would be.

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CHF,

Interesting read, though it seems the article may be grabbing at straws when it comes to CH.  There's only a handful of individual cases and the writer's terminology uses "may be responsive" several times.  Just based on this article and others that have tried it, I'd guess the responsiveness is no better than placebo.  IMHO.

J

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THMH, I agree that there are a lot of qualifiers in the article related to CH.  And I'm not sure how they concluded that some people who were diagnosed with hemicranias had actually had CH.  Guess I'd have to read some of the other articles they mention.  Interestingly, here's the title of an article from 2010 that I found while looking for others: "The prevalence of headache may be related with the latitude: a possible role of Vitamin D insufficiency?"

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