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Yawppy

Oh 3 yr attack...They're back!

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Hello, been a while since I had Cluster attacks, was 2014 . I remember joining a group back then, but soon the attacks stopped, all seemed well, just a fluke, so I have been quite content. Even so, last week, these things came back. Landed at the EMC room twice, before I could get to see the Neurologist, As I did not keep appointments all this time, so now had to be a new patient, ouch! Lesson learned.

I had some old sumatritan hanging around in the cabinet, but finally ran that out quickly, 4 pills two days, 100 mg. EMC gave me a 25 mg script, would not give me the 100, the ol bad for the heart thing, second visit, they must have felt okay, and went to 50 mg. Finally got a bottle of 100 mg, 9 pills, all I get for now till like the 20th, insurance won't pay for it till then,

Guess I have many many questions, but right now, scared I won't have Suma to fall on, what do I do then, It is the only thing that seems to work, , any suggestions (Even any home remedies?) on how to work around it, I do not see much, found a coupon at the drs office, will still be $66 that I really do not have, but would pay before the electric bill, (Scarey thought there!), Wife says AAA has similar options as well. I try to extend the Suma by not taking it till last moment type deal, but , well just scared at having another EMC room visit as well.

Glad to have found this board tonight, got alot of questions, and just wanted to say hello , so see everyone on the other side!

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Sumatriptan pills are nearly worthless.  I'm glad they seem to be helping you, but you really want injections or at least the nasal spray.  I know that's not good news with your current situation, but it's fact.

You don't have oxygen!?!   You need to demand oxygen, or you need to set up your own system using welding oxygen.  Oxygen is ESSENTIAL.  If you don't have a competent neurologist and won't be seeing one any time soon, you should really consider going the welding route.  To repeat: oxygen is ESSENTIAL.

You should have been prescribed a preventive medication, not just an "abortive."  Verapamil is the most commonly prescribed preventive.

Read about pharma options so you know what's available.  Google [goadsby treatment of cluster headache] for a simple listing.

Plenty of coupons on the internet.  For example, www.goodrx.com.

Start the vitamin D3 regimen, which you can read about in the ClusterBuster Files section.

Try drinking an energy shot such as 5-Hour Energy at the first sign of an attack.

Try melatonin at night, starting at 9mg and working up as needed.

Some people find that putting their feet in a tub with water as hot as they can stand helps calm an attack.

Read the list of triggers in the ClusterBuster Files section to be sure you're not creating any unnecessary attacks for yourself.

Consider busting (read the numbered files in that CB Files section).

 

 

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Sumatriptan pills - thus far have been effective for me, and yes currently am on Verapamill, this combo worked three years ago, hoping it will again work out fine, still no idea what triggers these. But am feeling the need to find alternative remedys, ty, a long list, and thank-you for a starting point.

No the neurologist never mentioned even or if any of these things, wont be seeing him again for about three weeks, not once did he mention the need for o2, however the, EMC room had me on oxygen, did not seem to do much for me, but the ride there did, , still though the neurologist has not mentioned it, and have no idea how to make one myself, will ask for sure. I tend to head outside, that currently is my Oxygen, wonder if insurance covers that, if not ... could you elaborate on this welding o2?

Goodrx, --that was the coupon I saw at the dr office, hoping insurance will work, but not sure. Just been perusing the clusterbusters files, so much info everywhere, not sure where to start , D3 regimen, what is that, have been taking magnesium per the wifes research that it helps as well. I am currently grateful my episodes are not as chronic as some I have read thus far this evening.

Five hour shots, , will give that a try, cant hurt, should not effect the suma, ty for the response, just about to head off, again thank-you!
 

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As far as welding oxygen goes it's pretty straight forward. Purchase your own tank or rent from a welding supply company. The oxygen is produced in the same manner. 

When you purchase the oxygen you will need a "story", they won't knowingly sell you it for medical reasons. More liability reasons than anything. Tell them a buddy is teaching you welding, or glass blowing. You don't need any other equipment, just extra 02. Buy a regulator online or one at a tool supply store. Need one with a CGA 540 style regulator to fit a welding oxygen tank. Then purchase a non rebreather mask. This is a good one:

http://www.clusterheadaches.com/ccp8/

Then check back and someone gave you best practices on how to use it. 

If your doctor can't give you a valid reason(respiratory conditions) for not using oxygen you should be fine. 

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Usually oxygen isn't administered very effectively in emergency room, plus by the time you get there you've missed the time to get on it, which is at the first sign of an attack.  With very few exceptions, a proper oxygen setup and technique will abort an attack in something like 10-15 minutes. An energy drink as you're starting the O2 can reduce the abort time.  Roughly 15-20 percent of people with CH use welding O2, either because stupid or uncaring doctors don't/won't prescribe it, or just because over the long run it can be a lot cheaper.  Check back with us if you decide to go that route.

A neurologist who doesn't mention oxygen and prescribes sumatriptan pills is essentially treating you for migraines.  What level of verapamil are you taking?  During a cycle, many people find that they only get results from something in the 900mg range.  Another big difference from migraine treatment.  I'm not saying you have migraines, or even that your neurologist thinks you have migraines and not CH; I'm saying that CH, excruciatingly painful as it is, needs to be treated aggressively with the best possible methods, not with a casual "Let's see what happens" approach.

The D3 regimen information is in the ClusterBuster Files.  Lots and lots of people are certain that it has either prevented or significantly reduced the severity of their attacks.

 

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40 minutes ago, CHfather said:

I want to explore this O2 option, but am having finacail issues, may be soon living out of a van, and am not sure how I will survive with these attacks. I will say I feel blessed thus far, as I do not have a chronic case, last episodes were like 3 years ago, and last time was on 320 mg Verapamil, and 100 mg suma, which seemed to work back then, and currently what I am doing now as well. I have an appointment with my Dr next week, and am bringing up O2, see what happens will keep everyone posted as well to be sure I head the right direction.

I have a lot of medical issues these days, was just told I am diabetic as of last week, high blood pressure, and cholesterol, have virtigo attacks as well as sleep apnea, what the heck next!I So I  looked over the D3 regimen information in the ClusterBuster Files. sounds and looks really complicated, just so much info, trying to study it, and figure out how to get the right stuff dosages etc. Also want to discuss further with dr next week as well, also still trying to figure out triggers and such as well. One thing of curiosity came to mind, noticed shrooms have been used, and am thinking maybe medical mary jane would also. 

Well got to go, feel another attack, will check back later.

TY

 

 

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Marijuana, medical or otherwise, does not really help with CH symptoms, except in very rare cases.  I get very confused by the initials things (THC, DMT, CBsomething), and I don't really know which if any of those are marijuana derivatives, but I have a vague feeling that some MJ derivatives have helped some people.

The D3 isn't really all that complicated (though I agree that reading about it definitely makes it seem that way).  We can tell you exactly what you need to take and when to take it, and folks here can tell you how to get it.  There's a good chance that your doctor will be freaked out by the "high" dosages of D3 and advise you not to do it.  In our opinion that's wrong.  If he/she is not freaked out, you might try to get a simple blood test that will tell you your current D level. 

I'm so sorry for all the mess you're in.  I can tell you, and I think most others here would agree, that oxygen and D3 are your best core strategies for managing CH.  On the other hand, if you can realistically expect to only have relatively brief CH periods with extended remissions, then I suppose some would say to go with the pharma (particularly insofar as it's covered by your insurance).  I think we might suggest upping your verapamil, doing a steroid taper, and riding it out with triptans and O2 if you can get it.  I still think it's nuts to be using suma pills, but that call is yours and your doctor's.  There is a lot of evidence from people with CH, and from some research studies, showing that triptans create rebound headaches, make attacks worse, and make cycles longer.  (BTW, if you get injectable sumatriptan (Imitrex), you can split your doses from the autoinjector so you get two or three doses out of each injector.  That reduces the cost somewhat (still obscene) and enables you to use more injections without running into the daily limits.)

Also BTW, the silver bullet massager that you mention in another post is used by many as an actual massage tool for the neck and shoulders during an attack, with what some have reported as very positive, or at least soothing, results,  That silver bullet hasn't been brought up here in probably five years, so I am reporting from distant history about that.

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I agree with CHfather, the tablets don't help me quick enough at all. ive only just been prescribed some nasal sprays and used the first one last night and it did help in about half hour but it don't taste great. I'm going to ask about injections and I think you might find a quicker relief from either of them aswell. def find out about the oxygen, I'm going to do the same! I'm in the uk so I'm not sure how your insurance and stuff works. I know how you feel tho, ive been suffering and feeling so depressed...I bet most of the people on here have been through that but I just joined and its nice to have support from people who know exactly what its like. its awful but you can push through like all the other times :) I keep thinking about when they are gone and how I'm going to celebrate! keep strong!

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