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CCH and Narcolepsy???


CarAB
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Does anyone have clusters and narcolepsy or another sleep disorder? 

Im not responding to treatments, I've been refractory to treatment and now I'm having sleep paralysis and hallucinations and can't control falling asleep at odd times. Neuro said its narcolepsy until proven otherwise while I wait for sleep study but seems odd to be cursed with both. Wondering if sleep disorders and clusters are a common thing. But I do know anything I try doesn't work and frustrating and I can never understand why. Only thing that helps is sometimes is sumatriptan injections and 02 together. 

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I have sleep apnea and before I got a CPAP machine my CH was way worse. My oxygen levels would fall dangerously low during sleep which would set off CH. I could fall asleep standing up before getting a CPAP. Keep your sleep study appointment and good luck.

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I did the first part of the sleep study and I don't have sleep apnea. Its the sleep latency test (?) I'm waiting for. I've fallen asleep Talking on the phone thinking I was just gonna close my eyes while talking. 

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There's a big long discussion of sleep disorders and CH here.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4542772/

I have no idea what they're saying, but maybe you are (probably you are) smarter than I am.

From the report: >>> Up to 24 % of middle-aged males exhibit sleep disordered breathing (AHI ≥ 5) [83] and the studies suggesting an increased prevalence of sleep apnea in CH are uncontrolled [17, 20, 22] except two [19, 65]. Further, in earlier studies it is not always clear whether patients were in active bout during investigation and one study investigating the same patients inside and outside of bout does not specify how many patients were investigated outside of bout and for how long the patients had been attack-free [65]. All the patients included in the present study [51] were in active bout and we did not find a significant difference between prevalence of sleep apnea in patients compared with controls. However, patients did present more severe cases and a numerically higher apnea-hypopnea index (AHI), but it is entirely conceivable that this may have been caused by the massive over-representation of smokers in the patient group. Our patients were only investigated during the active part of the disorder and the possibility that hypothalamic dysregulation produces sleep apnea during the cluster period cannot be excluded. However, it seems unlikely that the apnea event itself is the trigger of nocturnal CH attacks, as no connection between the apnea events and nocturnal attacks were identified. Further anecdotal evidence provides no indication that treatment of the apnea alleviates the headaches [51, 65]. <<<

Here's what some doctor wrote about the possible connections, saying that narcolepsy doesn't seem to be related to CH.  Doctors and researchers seem to often be wrong about CH, of course.  http://www.mhni.com/headache-pain-faq/cluster-headaches/cluster-headache-sleep

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Thank you for finding that information. I'm a 30 year old female of average weight and even with multiple CH attacks a day I could still take my son to hockey practice. Now I can't drive there. 

First a pituitary tumour (told that was the cause of my CH, was sedated and tubed, then when I woke up told they didn't do the surgery and don't know if they were right and will see if it grows..... Yah imagine my disappointment thinking they found the cause) Then get narcolepsy symptoms.... Mushrooms don't work for me, now I'm a PTA mom trying ANYTHING to keep me awake and get rid of my pain. I'm messed up like a soup sandwich now trying to cope.

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CarAB, how often does O2 on its own work for you?  Or does it only work, when it does, along with sumatriptan injections?  I'm sorry that we (or at least I) can't help you with the sleep disorder things. (I'm sorry that pituitary tumor thing didn't work out, because as you say, that is a recognized cause of CH pain.)

Have you considered the D3 regimen (described in the ClusterBuster Files section of this board).  Has an alternative diagnosis, such as a hemicrania, been considered? Have you tried indomethacin (a strong anti-inflammatory that doesn't work on CH but does work on CH "lookalike" headaches)?

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I only get relief if I use both O2 and sumatriptan injections. Have to catch it fast. 80% of the time that works, 10% of the time redosing with sumatriptan will work still on O2 and other 10% I end up literally trying to make myself stoned so I can breath thru it and stop smashing my head on the corner of my bed. Sounds dramatic I know. I need both o2 and inject suma for relief. I've tried over a dozen meds, nerve blocks, I have a 700$ gammacore that's being used as a paper weight. 

I have done indomethacin, anti inflammatory that's hard on the guts. They had me do it for 3 weeks. Maybe not long enough? Only other thing is I have trigeminal neuralgia on the same side as clusters. I would still like that pituitary tumour removed, how do they know it's not causing my clusters. It's on the right lobe, I have right sides clusters and heck they had me sleeping but guess I'm not a doctor. 

I will look into the D3. I haven't heard of it. I take 30,000 Iu of vit D and vit K1 and vit k2 but I'll read the protocol. Thank you 

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CarAB,

Many/most people have found that they benefit from upgrading their O2 system (if you haven't already done this -- it seems like you're well on top of things).  A regulator of at least 25 lpm and the mask made specifically for CH can make a substantial difference (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit)

You might know this, too -- Many people find that quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of attack can be helpful on its own for reducing the severity of an attack or even sometimes aborting an attack, and is particularly effective if done just as getting on the O2.  There's also a recently-developed breathing strategy (by one of the best thinkers about CH treatments) that is working well for many people.  Unfortunately, I can't link to an internal thread here, but you can find that technique if you enter the phrase "red neck" into the search bar at the top right.

Almost no one needs the full 6mg of sumatriptan from the standard autoinjector (it sounds like you might); mos6t can get an abort from 2 or 3 mg.  If you want to try reduced dosage (I can see many reasons why you might, but also why you wouldn't), there's a file called "extending imitrex" over in the ClusterBuster Files section (might be low on page 1 or on page 2).

Unfortunately, I think three weeks of indomethacin is a long-enough trial period.

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I haven't upgraded my o2. My regulator only goes to 15lpm and I use 15lpm. I use a non rebreather mask and tape the little holes on the sides so no air escapes but it's not the best. I have a good medical team however I live in Alberta, Canada and there isn't many with clusters here, let alone refractory CCH so it's hard. My one doc did do a study on SUNCT and pituitary andenonas https://www.ncbi.nlm.nih.gov/m/pubmed/23197348/ and he scans all cluster patients and he says a lot of treatment resistant cases have even a small microandenoma  and removal helps, but surgeons don't wanna take them out if hormone levels are good. He has removed 2 microadenomas in CCH which resolved symptoms. But getting a ENT and neurosurgeon to do it is hard. When I went in it was on my chart I had SUNCT to get them to do it, which they backed out anyways. (Canada has Free medical so doctors have to agree, no out of pocket and long wait lists and your at your will if they say yes or no) 

it was my doc that told me to check out this forum after I was told to source and try MM. When it didn't work they had a patient who was successful talk to me and go over how much and going off suma and topamax and used them as a coach to try and get these to stop but no luck. You usually don't get a doc pushing you to do that. Another patient I talk to mentioned the forum if I wanted to fly to the US with her to a conference (??) so I am new to this forum. Not to clusters but new here. 

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Well, since your O2 seems to be losing effectiveness, I would consider all those things.  Some folks say the mask alone gives the 10-20% quicker aborts. Others have said that they get at least as good results from the "red neck" system I suggested you should look up.  Higher flow rates are mostly important if you are prevented from using a fully-effective breathing method because you have to wait for the reservoir bag on the mask to refill.

For some people, MM doesn't work but other substances do (LSD and LSA/seeds).  The seeds are easy to get and legal to possess, and simple to process, and they generally have no psychedelic effects at all at levels needs to treat CH.

The conferences are generally considered life-changing, or at least dramatically life-improving, events by people who attend.  Info in the "Conferences" part of this board.

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