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Clusterwife06

Looking for advice

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I apologize in advance if I don't follow proper etiquette this is the only forum I have ever joined. My husband suffers from CH I read on this page 4 years ago about "busting" I am so happy to say after that cluster he did and had no clusters until 8 days ago they have returned. I remember the doctor he was seeing had him on cardia and amitriptyline but I am seeing verapamil here as well and now I'm unsure if memory serves me the verapamil made them worse so he switched to the amitryptàmine have any of you heard of this? 

We live dual no specialists and now they will not give us the imitrex injections anymore only the pills and they are less then helpful. Please any advise on cluster stopping meds, or pain relieving remedies. Thank you.

 

 

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I was diagnosed 4 years ago with episodic clusters and they are now appearing with more regularity. I have changed neuros and now have O2 with 15 lpm and a clusterbuster face mask purchased online. It has helped greatly in the past. Until this past week, all clusters were on the right and all classic migraines were on the left. Last Monday, I had a large #18 molar removed on the left (side of migraines).I had crazy pain four days later (no dry socket or infection). I thought it was tooth related until I got my classic "knife up the nostril" pain for the first time on the left side on day 5. It's now day 8 and the pain won't stop. Followed by lots of face, jaw and carotid area pain. Oxygen for 15 min and Amerge took it down. I am on tegretol, amerge, amitriptilene, and large dose of verapamil. However, now the oxygen doesn't seem to be working and I was wondering if that is usual? unusual? Does it take more than 1 or 2 sessions with oxygen to get the pain to subside>?  This is beyond painful and it's doubling my blood pressure...literally. Any feedback would be helpful. If this is in the wrong place, I apologize. It is my first post.

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Hey Clusterwife06 and Maddie3,

Take a look at the link titled "D3 Regimen for CH' in the Theory and Implementation section.  It has everything you'll need to take control of CH.  You can also click on the following link, it will pull up this same post.

Take care and please keep us posted.

V/R, Batch

https://clusterbusters.org/forums/topic/6194-d3-regimen-for-ch/

 

Edited by Batch

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Maddie

Clusters tend to come and go not give constant pain for days. If this all started after the tooth was removed and not before I would have this looked into, you could be dealing with something else. People have reported oxygen not working as well as it once did in the past. I find this happening to me but it is due to me getting lazy with my breathing tech. you can try downing a energy drink on the way to the oxygen tank to help but if your blood pressure is high that might not be a great idea. I would get checked out by a doctor and rule out anything else that may be causing the pain and rise in blood pressure. 

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I would go sun neurolgus. He comments that it was after the extraction and on the opposite side of his CR. Maybe it could be a Neuralgia by extraction. it is a continuous pain others are like discharges. It is extremely painful as a CR but more desperate because it is continuous pain with ups and downs. that is my experience since I suffer CH Tic

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Just wanted to offer an update, still no oxygen, paperwork nonsense of some sort but I do have good news, we spent 6 hours in the ER on Friday he was given methylprednisolone  dosepak and Valium 5 mg 3x a day  and he has not had an attack as of yet and no shadows. I will update in a few days if the meds are still working. What meds work and don't is for sure a crap shoot except for sumatriptan it always works, but causes heart issues for my husband he during a 2 month cluster had between 3 and 5 attacks a day, you reach for what works no matter the crappy side effects. Also caffeine is helpful mostly with shadow headaches though not really with the big monsters so we cut that out, losing sleep was not helping his ability to keep in the good fight.. Best of luck to you all and keep fighting don't give up.

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Update... day 23 of cluster he went Most of Friday all of Saturday and almost Day Easter Sunday, (pm Easter Sunday he had the worst CH he has ever had i have never seen him not be able to control himself he was in so much pain, even aside form these SOB's he has many other painful things happen to him so his threshold is high. I thought he was dying right along with him. I wonder if it was the valium or maybe so intense because he is on such high doses of the methypre. I waiting right now for the Dr. office to open I am praying she has good news about the O2 its been a week. I am so worried the next one will be that bad is there anytime I should take him to a hospital during? 

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A steroid "dose pack" is generally like pissing in the ocean and is not enough steroid to expect relieve.  If he has a cardiac condition that precludes the use of imitrex that condition should be addressed so he has the option of using when in a corner.  I know everyone is cautious about triptans and heart issues but the concern seems a bit overblown when you review the cases and the the FDA reports.  My point is if his cardiac status is so tenuous to have an absolute contraindication to triptans then there should be room for improvement.  The valium may help him cope with the anxiety clusters can bring but will not exacerbate or diminish an attack.  O2 will be very important to try...if it aborts his attacks it is much more likely he could respond to busting methods (my opinion)  Proper technique and flow are important before discounting it as a treatment.  If you want to stick to legal offerings and D3 isn't helping consider asking about CGRP injections (insist on 140 mg/month to start)  Though expensive, relatively new to market and has a few unknowns it has shown promise in treating clusterheadaches.  The general consensus is GammaCore is pretty useless although I am sure there are some exceptions.   The hospital could help if they give him oxygen properly and/or give him imitrex in a monitored setting.  Otherwise not much they can do  

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Maddie,

You probably should start a separate thread so we can focus better on your situation.  Just click on "Start a new topic" at the top of the page.

Dental surgery often involves the use of an anesthetic that flares up CH in many people.  That's not very helpful to know right now, after the fact, but it could help as an explanation, and a warning for the future. Xylocaine is the anesthetic that typically causes CH flareups; prilocaine doesn't.

This is a small thing, but it might be relevant: It is sometimes true that O2 significantly loses effectiveness when the O2 in the tank gets low.  Switching to a full tank might help.  And of course it could be that 15 lpm is just not enough flow for you and you need to get a 25 lpm regulator that allows for a more aggressive breathing strategy.  I just posted a bunch of O2 info, plus some other things that might be helpful to you, at this part of the board: https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/?tab=comments#comment-61404

 

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Clusterwife',

You've received a lot of good input, to which I have just a little to add.  One thing is that, even though I agree with Pebbles that the doctors might be being overcautious in stopping the Trex injections at all, maybe they'd be comfortable reducing the injectable dosage. The autoinjector contains 6mg of sumatriptan. It has become clear here that most attacks can be stopped with 2mg, or at most 3mg. Many people take apart the autoinjectors so they can measure out their own doses, but your doctors are unlikely to go for that -- but sumatriptan can be obtained in vials, with syringes so the patient can measure out his own dosage, and maybe the docs would let him do it that way, at lower doses.  There is also a 4mg autoinjector.  I would observe also that if his pain is constant (it's not exactly clear to me), it could well be that he has a CH "lookalike" called hemicrania continua (HC).  There are some differences, but doctors aren't usually sophisticated in these diagnoses (and your doctors don't sound great).  HC, unlike CH, responds to a medication called Indomethacin. As I say, if the pain is pretty constant, Indomethacin might be tried.

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Pain is constant during an episode but not during the entire 12 week period pain is severe during a CH itself though in fact its getting frighteningly worse, he does get shadow headaches in-between the CH's during the 12 weeks but he doesn't have headaches of any kind for the rest of the year until the seasons flip again. Thx for the input pebbles and CHfather  much appreciated. 

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Clusterwife', I hope he gets that oxygen soon, and that the D3 regimen might kick in for him.

I recently posted a list of things that people who don't have effective medical treatments can do to try to address the pain during an attack, or try to lessen or prevent it beforehand.  That list is here: http:// https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/?tab=comments#comment-61404

I'm a supporter myself (daughter).  I have some understanding of how terrible this is for you to endure, too.  Thank you for being there for him.

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