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Quick question on CH symptoms

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Ok, I'm new here. Self diagnosed a little over a week ago, went to doctor, explained symptoms and cycles, he agreed. Been going on for 6 years episodic, twice a year and being treated as migraines until now. Supposed to see neuro soon, waiting on the appointment date now. Until recently all I had available was Rizatriptan or Sumitriptan tablets. I now have nasal spray as well though I havent used it yet and doctor gave me verapamil (which despite my objections he insisted should be extended release. I'm waiting for neuro to hopefully fix that but for now taking it a few hours before bed time.) I had a cycle start about 3 weeks ago: one headache, every night, approximately midnight, hits whether I go to bed beforehand or stay up. This lasted for 2 weeks, while I started googling and figuring out what it was finally. I quit drinking, started verapamil, got a steroid injection in doctor office (normal dose of IM steroids) and an absurdly low course of prednisone (20mg a day for 5 days). I also started taking vitamin D, magnesium and vitamin K supplements and 5mg of melatonin to help me get to sleep at night. The headaches stopped Sunday and I went all week with only shadows. 

I woke up today with a "minor" CH. It wasnt bad as CH go but it was outside of my usual cycle timing. I've never had one wake me up at 8AM and now I'm stressed cause if that starts happening I'm gonna start missing work. I'm hoping it is just a fluke because of taking the verapamil, vitamin D and magnesium. 

Anyway, when I woke up I decided to take pics because I am supposed to see a Neuro soon. I got to the bathroom to look in the mirror and these are my symptoms: 

Obviously pain. This is in the temple, and behind the eye mostly but also goes up the forehead a little and the back of my head at the base of my skull is tight and tender as well. If I had to put a number on this one I would say Kip 7~

Autonomic Symptoms:

Left eye watering/Right Eye dry. 

Left Sinus feels congested/swollen shut and yet it feels like the air is burning inside. Right sinus clear. 

Pupils seem to be similar in size. Left eye has difficulty opening. I am not sure if this is swelling or muscles spasming in response to the pain. Trying to open it fully hurts more. Not sure if because if because of pain or a sensitivity to light. If I leave the left eye shut, i have no sensitivity to light at all while using my right eye to navigate. But trying to open the left eye seems less painful in the dark. I know photophobia isnt really a CH thing but the fact that it is unilateral? Idk. Also, both eyes bloodshot. That symptom is the only one that seems to be on the right side as well. There is zero pain, watering, drooping etc on the right. Sometimes I try to focus on compartmentalizing in my head and escaping into the right side to get away from the pain.  Sometimes it helps, sometimes it doesnt. This morning I just wanted to sleep. Putting a cold wet washcloth on my eye used to help a little, now it helps, then feels like it hurts more so i decided to try the whole ice to the carotid deal. Frozen vegetables in a pillow case, wrapped around the neck, surpringly helped a bit. After about half an hour the pain subsided again and I fell asleep, waking up around noon with my shirt soaked from the condensation of the thawing vegetables lmao. Still had some shadow type pain but it was mostly gone and without using any actual medicine this time. 

 

My questions:

Is the red eye on both sides a little weird? I mean my right eye doesnt hurt at all. Autonomic symptoms are supposed to be unilateral, but from what I understand it varies a little. 

Unilateral photophobia? Is that even a thing? Anyone else experience anything like that? 

Is it normal for the meds to throw off your cycle temporarily like that when you start? I'm thinking, the quitting drinking, prednisone and influx of verapamil and vitamins maybe just raised the threshold temporarily, because I have been having shadows every evening but they never materialized into anything until this one woke me up out of the blue in the morning. 

 

I know, I know. Go to a doctor. I'm crossing my fingers that I will get to the neuro soon, but I'm not holding my breath that he will be competent. My little corner of Texas is famous for doctors that know very little about anything. While I know that you all are not doctors, I am pretty sure a lot of you know more about CH than any doctor within 300 miles of me so I would value your input tremendously. 

 

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Barcode,

I can't answer any of your questions.  I can suggest that we sometimes see that when a treatment is effective, attacks start occurring at different times.  We can hope that's what's happening here.

I can tell you that you want a prescription for oxygen, which is the best abortive with the least side effects (none).  You really want to be prepared to insist on that with the neuro, because even most neuros don't have the sense to prescribe it, even though it's right there in all their books and online resources as the #1 abortive.  Take a look at this document. https://clusterbusters.org/oxygen-information/  It's now kind of outdated in some ways, but the references are things you might want to bring with you (particularly the JAMA report).   I can suggest that you try a 5-Hour Energy as soon as you get an attack.  It will often at least lessen the severity, and sometimes abort it.  For shadows, ginger works well for many people.  Strong, real ginger, as a tea or a string candy.  Many people say strong enough that it stings when you drink it/eat it.  Verapamil dosage can need to go pretty high, as much as 960 mg/day or more, before it's effective.  Most docs won't prescribe this high of a dose, because they don't know it's needed.  It has to be monitored.

You should read about "busting" in the numbered files in the ClusterBuster Files section.

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Howdy Barcode, I'm sorry you have to be here, but welcome.

To answer your questions directly: I've had my cluster attack times change before. It can be unnerving because you can become dependent on their predictability but it does happen, and can happen from meds or lifestyle changes.  I've also had both eyes go red, though not tearing in both before. 

Regarding Vitamin D: make sure you're chowing 10,000 ius a day at least and see if your docs will give you a 25 OH blood test (basically your Vit D blood concentration).  You've obviously done your homework on various med options so I won't go into more detail there beyond saying that triptans are known to cause rebound headaches and possible increased frequency in some folks.  

Sometimes, an ignorant doctor isn't necessarily a bad thing... especially if they'll prescribe oxygen in the requisite 15lpm/ non rebreather mask amounts.  

If you haven't explored them yet, the ClusterBuster Files are an excellent storehouse of CH related information.  And if you have any other questions, fire away.  Good luck.

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Regarding the dosages. I started vitamin d loading at 40,000 IU (with coconut oil for adsorption) last Saturday. Magnesium 800mg a day started on monday. I figure the regimine calls for essentially a 600,000 IU loading dose program on the d3 so that means 15 days at that dosage then dropping down to the 10k IU a day. Vitamin K 100 mcg a day. Verapamil 240 mg ER (again, I know...hopefully the neuro will fix that for me.) Just finished the 100 total mg the doctor gave me of prednisone. 

I am hoping for oxygen. Even injections. I dont know how effective a nasal spray can be if one of the primary symptoms of CH is congestion. Either way I am trying to stay off the triptans for the moment. I have read through the "busting" articles. I have a lot of experience "busting" before I had CH. I grew my own for a long time. Hoping to regain access soon. Until then, keeping energy drinks and ice packs around and crushed ice to induce brain freezes as needed. 

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Hi BCJ...welcome....OXYGEN OXYGEN OXYGEN....you won't be sorry..........

Re nasal spray and congestion...me too...so I'd use the opposite nostril (rare that BOTH blocked)...worked just fine..99+% of the time. Zomig 5 mg....give it a try...my abort of last resort...damned expensive.....didn't quite care at the time.....

Best

Jon

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Update: Saw my neurologist today finally...aaaaaaaaaand....he actually prescribed the oxygen without me even having to ask for it. Hi flow rate was a little lower than suggested at 10 lpm but I figure I can always buy a different regulator if needed. the tank and script were the important part. Also gave me a script for injections so that's nice as well. 

So now my new problem. Oxygen has to be supplied by a DME provider. There was only about 5 in network within 100 miles. and only 1 of them has Oxygen. Their website kind of bugs me a bit though....

Quote: "

Oxygen Therapy

Lincare recognizes that each oxygen therapy patient has a unique set of circumstances based on the progression of their disease state, desired activity level and personal preference. Oxygen concentrators, stationary and portable oxygen systems, and high pressure cylinders are available to coincide with each physician's prescription. It’s our belief that when patient needs are most accurately met, patient outcomes continue to improve.

Regular monitoring of how closely each respiratory patient follows the prescribed course of treatment helps Lincare ensure compliance with liter flow and hours of use. It is this regular monitoring that increases the likelihood that patients will receive the maximum benefit from prescribed therapies. Our wide suite of services also allows for program modifications to be made quickly to accommodate fluctuation in disease condition or change in lifestyle need. As a result, patients and physicians can rest assured that Lincare is equipped to be a long-term partner in the fight against COPD and other respiratory disease. "

 

This deal about regular monitoring of patient's o2 usage to ensure compliance with liter flow and time used REALLY bugs me and seems to show a lack of inclusion to the unique needs of CH sufferers. I sent them an e-mail asking if they had experience with Cluster Headache patients before I try obtaining anything from them. I may try to convince my doc to write a medical necessity letter to the insurance to let me go out of network to find a supplier that just does their job and "supplies." Idk, is this typical of oxygen suppliers in your experience? 

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Hey BCJ...sorry to see this given to a CH patient without qualification for THAT condition. NOT uncommon for O2 suppliers to be ignorant of clusterhead needs(btw...DIFFERENT than venal or uncaring, since 'ignorant" is fixable).  I have been a Lincare patient since 1985 (tho not lately) and found the most important part of the relationship was with the store manager. Some are perfect for the position (care, concern, compassion, flexibility)...some are just droids. I suspect Lincare corporate has tightened down on options available to individual managers...and I suspect it's a) corporate paranoia (read that lawyers got involved...SHEESH, that always come out well)  and b.) the increasingly complex, confusing, and voluminous requirements that health insurance companies have visited on EVERY aspect of the health care "industry". I've had several doctors quit because of it..... and some other types of providers decline patients with particularly troublesome insurance. 

So....your first step should be developing a relationship with the manager (give 'em a copy of this: http://www.clusterheadaches.com/O2/index.html)...can't hurt....second would be to get a script with HIGHER lpm listed....AND the medical necessity letter you described (this can be PRICELESS in MANY circumstances beyond just O2).  My script said 8 lpm...I used 5-15 without any concern over being monitored for usage. Actually, I talked them into stocking M tanks...since E tanks are much smaller and lasted only a few hits for me. Kept 2 M's for home...and 3-4 E's for 'travel' and work (one in car, one at work, two in reserve.) Regulators off the internet...don't buy or...God forbid... lease them from the supplier. I got 2 25 lpm name brand  regs for $25 ea!! And a non rebreather mask from CH.com store (a PRIZED possession).

Lot of folks out there go with welding O2...NONE of the problems described above....probably cheaper...just less convenient depending on your health level and living situation (e.g. 3rd floor apt....no elevator...YIKES!). Still, If you travel out of state...Lincare has an excellent program for continuance of service in many far flung locations. I used it in Oklahoma, Nevada and California multiple times.  Kinda tough to drag a welding tank around.......................

Best

Jon

PS  Sorry for any redundancy...I failed to re read the whole thread.............................

Edited by jon019
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Hey Barcode

Yeah, I'm sorry to say that in my experience ins companies and suppliers stuck out loud when it comes to O2, especially when you're talking high flow!

I'm about to turn 71 and Medicare won't pay for oxygen for clusters period!  My work around is taking the docs, ins companies, and suppliers out of the equation......paid $321 for a large (48" tall x 9" dia) cylinder full of O2 at my local welding supply......$50 fir an oxygen regulator at harbor freight......$30 for a clusterO2mask at the ch.com store......and $21 per refill/exchange.

In 2016 I cycled from Mid May til Mid Oct and used 3 refills.....$63 and no freaking hassle!!  Welding ox and med ox comes out of the same faucet.....med tanks have to be vacuumed prior to refilling while they just do a sniff test for welding tanks.....been huffing it since 2007 with no ill effects and I know many other clusterheads who use it as well!

Dallas Denny 

 

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As Jon said, relationship with the store manager is a critical factor. We first got O2 from an "ignorant" Lincare store manager, but one who was willing to listen, read, and learn, and became exceptionally helpful. Call up.  I worry that if you don't call, you might not get a tank at all, but a "concentrator" that makes O2 from room air.  You don't want that. Also, make sure they're giving you a nonrebreather mask, not nasal cannula or a rebreather mask, and, as Jon and Denny suggest, at least one big tank for home use and one smaller tank for portability.

(We eventually went the welding O2 route and it generally has been better, except for the schlepping of tanks that Jon mentions.) 

We provided the store manager (and the respiratory therapist who worked there) with several journal articles. The bedrock one is this study: https://www.ncbi.nlm.nih.gov/pubmed/19996400  While it calls for 12 lpm, most regulators that go up to 12 will also go up to 15, which is a good starting-place. (In my opinion, you will get some relief at 12, and maybe even full relief at 12/15.)  On the right side of the page, under "Similar Articles," you'll see another article, about masks, and if you click on that one and look under "Similar Articles" you'll see several more potentially relevant ones.  But as you say, just getting a basic system probably should be your immediate priority.

Another O2 mystery: Why would a doctor who knows enough to prescribe O2 without your having to ask, write you a 10lpm prescription?  Amazing. 

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2 hours ago, CHfather said:

 

Another O2 mystery: Why would a doctor who knows enough to prescribe O2 without your having to ask, write you a 10lpm prescription?  Amazing. 

CHf....I thought the EXACT same thing...it's like offering a free car...with only 3 wheels!.....You can drive it....but it aint gonna get you very far............

Edited by jon019
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