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What do I do?


CrystalR
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Hi. I'm new to the forums and was just told on Wed Im having cluster headaches. I started a headache diary on Wed after going to the dr. Im having about 5 a day. Some of these get so bad that if i thought ripping my eye and temple out would do any good they would be gone. Ive been having these headaches for almost 2 yrs now. Before that I hadnt had any in maybe 5 yrs. After the intense pain is gone I'm left feeling weak and this annoying dull ache in my head and neck. I am on vicodin (not helping), Maxalt (nothing), and a medrol pack (dont see any change). im a mother of 3 and a wife. I thank god im a stay at home mom otherwise i think i would have lost my job by now. I dont know how to handle this anymore. I dont want to talk to anyone, not even my husband.  We did a ct scan on Wed both w/ and w/o contrast. Everything was normal. Im going to be seen by a neurologist this week. What can i do in the meantime. even when the intense pain isnt there i feel like shit. My thoughts are jumbled. i feel like im a mess. I guess at least I now know what my headaches are and after reading a few posts on here i know im not the only one

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Smart smart smart you are Crystal for seeking out info on your own - and you came to the right place!

1) High flow, 100% oxygen (not low flow rebreather O2 as still commonly, erroneously prescribed by doctors) is an effective, non toxic abortive for the vast majority of us CH'ers. Info here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

2) If you're going to take toxic drugs, then yep, vicodin's a joke, and Maxalt tends to be too slow for CH. Imitrex injections (and inhaler) are a much more effective abortive, but O2 is a much healthier way to go and it will allow you to detox from the drugs so you can (hopefully) prevent your CH with what nature has provided us, literally growing right at some of our feet, and more effective than any prescription:

3) Of course I'm talking mushrooms and/or RC seeds here, and so many of us long time CH'ers (30 + years for me) who have tried every drug and then some, have gotten their lives back with busting and concluded this is the best way to go.

4) If that neurologist you see this week isn't a bonafide headache specialist, proceed with extreme caution, as garden variety neurologists often, notoriously, know nothing about treating CH, but in their arrogance pretend as if they do, and proceed to unleash all manner of harm.

Lots of good stuff to learn about, and a much brighter looking future for you now that you're taking matters into your own hands.  :)

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I just want to stop hurting. I thought for the past few years they were something to do with my sinuses since the pain is always at one eye or the other. The dr just kept giving me antibiotics and T3's which would do nothing. I never heard of cluster headaches till Wed.

I have a couple questins ... How do I get the oxygen? What is rc seeds and where can I find them? How do I know if the neurologist is a headache specialist? Has anyone ever been cured?

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How do I get the oxygen?

Either via a Dr. prescription, which you may have to "beef up" by acquiring your own high flow regulator and non-rebreather mask (or ideally a demand valve system), or by just bypassing the Dr. and getting the same O2 from a welding supply place without prescription as many CH'ers do.

What is rc seeds and where can I find them?

They're Rivea Corymbosa seeds, known for their healing properties for millenia by indigenous peoples. You can legally order them online and possess them, but if you yell to a cop "hey I'm ingesting RC right now!" there's a technical illegality there. The cop might think you're just drinking RC Cola though.  ;D Many CH'ers use them with success, some don't get relief 'til they try mushrooms. RC is milder acting - if you take it before bed you'll likely only experience the side effect of improved sleep. Iamshamn.com is one of the popular sources. More info here, but the suggested first dose of 8 to 10 is way too low IMO - I'm more about 25-50 for the first dose: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

How do I know if the neurologist is a headache specialist?

I guess if it doesn't explicitly say headache specialist when you look 'em up then they're not.

Has anyone ever been cured?

The C word!  :D I think plenty of episodic CH'ers have gone into a potentially "permanent" remission with regular maintenance busting every 2-6 months or so. No actual cure is known. Chronics certainly have it tougher, with a more likely busting scenario having them going into extended remissions and reducing severity, but there may still be high cycles where attacks that need to be put down with O2 can break through.

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Is it hard to get the o2 through insurance?

Yes, that was my experience with Blue Cross at least - I was flatly denied - and I've seen others report trouble there. I've also seen others report that welding O2 is kinda cheap.

do all of those help with the shadow headache?

They certainly can, yep.

Do they make your eye feel like it slants or droops?

Do the CH attacks make your droop? Absolutely, it's a common hallmark symptom in fact.

I went through the forums and found out how to fix the rc seeds. My husband tracked them down for me. I am getting ready for my first attempt. 

Yay Crystal!  :) And you've hopefully seen the bit about the advisability of being detoxed from the meds for 5 days before busting?

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And also... do all of those help with the shadow headache? 

From an old ch.com post:

On 12-Jul-05, at 6:26 PM, Linda Howell wrote:

Powdered Ginger? After all this time I thought IÂ’d heard of everything out there, but this is a first for me. I wonder if someone could briefly fill me in.

Pinky you said it was pretty good at treating a low-level CH and even though my success with the seeds is astounding to me, IÂ’m still getting those low-level ones as well as shadows. IÂ’d sure like to hear more if anyone has the time to tell me about this.

Thanks. Linda

I've mentioned this several times on clusterheadaches. com over the years. For some reason, very few people have commented on it. I came across it in a book on migraines years and years ago. Apparently it's a pretty well-known thing among migraineurs. For some even just drinking ginger ale or eating gingersnap cookies helps.

I found that eating fresh ginger root isn't as effective (and it's a lot more of a pain in the butt shredding and dicing it besides) so I stick with the powdered ginger. Health food stores and bulk food places usually have tons of the stuff and it's not that expensive. If you just buy those little spice jars you'll pay through the nose for it.

Dosing is simplicity itself -- mix up half a teaspoon of the powdered ginger in some water and glom it down. You'll have to rinse out the glass and drink that as well since the powder doesn't actually dissolve, it just gets suspended in the water. I guess you could just eat the powder directly when it comes right down to it, but I find this method the most convenient. If after ten or fifteen minutes you feel no effect, take another half teaspoon. In my case I have found that if a full teaspoon doesn't work, taking more does no good, but you may be different.

I find the effects last between two and four hours, so I usually keep a fair bit of it on hand. Half a teaspoon isn't much, but it adds up over a week if you're taking it four or five times a day.

As I say, it does nothing whatsoever once you get to the higher Kip levels, but it's far and away the best thing I've ever come across for handling shadows and low Kip level attacks. As good as Imitrex, actually -- within its limitations. Of course, as with EVERY other medication in our arsenal, it may not work for everyone. But if it works for you as well as it does for me you'll find it nothing short of miraculous. The Chinese claim all sorts of other health benefits from eating ginger on a regular basis but I can't vouch for those -- I only ever use it during the ramp-up and ramp-down of my CH cycles.

I have no idea WHY it works. No idea of the pharmacology behind it. I just know it has worked for me ever since I started taking it.

pinky

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A friend of mine who suffers from seizures as well as CH and brain tumors does medicinal marijuana. He said it helps to some degree. Has anyone had good results with it here?

From observing the posts of other CH'ers it appears to me that there's an occasional individual who can get some benefit from it, but more often it's an actual trigger to be avoided.

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Ginger is a big remedy in my family. My grandma used it for just about everything. I've never tried the powder but I'm willing to give anything a try at this point.  :-/

So mj is like smoking period probably. I'm a smoker and ive noticed smokings makes mine worse. Hot baths seem to make it last longer too. Or maybe it just feels that way. I've taken a to bath twice now while having an attack. Instead of the usual 45-60 min attack, it caused 90+ min attack.

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Crystal,

You can slam an energy drink with taurine at the beginning of a Ch or for a shadow. If you can't handle those, strong coffee at the beginning will help too.

I now keep iced coffee like Starbucks or something in the fridge for sudden hits. Last night, got hit at bedtime, slammed a Cappacino (sp?) at 10:30 and was asleep by 11:00. When hit, the caffeine does not keep me up at all. Also, Melatonin helps, but you should not take it while on the road to busting according to many.

The head and the lack of sleep and the meds will make you feel brain dead. :( Stopping the meds was a big help with my alertness and stability. Alternatives are there that won't mess with your body and brain. 8-)

Best of luck. Read, ask, and continue to advocate for yourself. You will regain your power over your life and that will give you your life back. :)

Droopy eye, tiny pupil, and neck pain on the CH side are all very common. With luck, all will return to normal when you are out of cycle.  8-)

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I actually feel sort of ok today. The shadow isn't as bad. I have drank 3 cups of coffee. My HAs are not as often today. I think I may be coming to the end of this cycle. I went from having 5 a day, to yesterday I only had 3 and they were not as intense. Today I have only had one. I was able to sleep a little better last night too. I think I feel better just reading everyone else's posts too. Its comforting to know there are things I can do to control some of this.

I also got in touch with my nurse practitioner and she is getting to work on the insurance for O2. Here's hoping...Thanks everyone for the replies and advice

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Crystal the real beast or beotch of this thing is you just gotta find what works for you.  And I hate to say this but what works may work for few years and then not.  Some health tips, exercise, take vitamin d and magnesium.  Its better to do numerous things rather then one.  Employ medical and natural.  See Maxalt works for me very quickly but it doesn't for you.  So everyone is different.  Cold may help too.  The body over heats in an attack.  Ice on the head and what not.  Allergy meds can help as well.

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I contacted an "herbalist" near us. The lady said she has worked with a few people before that has CH. She asked me a ton of questions. She said to give her a few days and she will come up with a natural regimen. I'm willing to give anything a try. I will post once she gets back to me.

I know there are a few things I have to do on my part too. For one, quit smoking. Ive tried patches, pills, and cold turkey, but I've lasted 9 months at the most.

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That was the first thing the NP told me I need to do. That's easier said then done for me though. She said weight can be issue too. I've went from 231lbs down to 161, but still need to lose down to 130 to be in my "ideal weight". Does anyone here think weight has anything to do with it?

Another question...does stress really trigger them or is it that just another drs like to throw out at ya? The past month has been the least stressful we have had in awhile, but this still hit.

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I figure the NP is giving you critically important instructions for maintaining your general health, which you should definitely follow, but I think a lot of us haven't really seen too much of a correlation between that stuff and CH (disclaimer: every once in a blue moon we do hear from a CH'er though who feels a better diet/lifestyle/exercise has helped them).

Some of us find that an especially stressful event can trigger an attack, but as you've found, relaxing times in general often coincide with a higher CH cycle.  :-/

My guess is that the rank and file CH'er and CH supporter vets on this message board (like Bonkers/Ron) actually have more of a handle on these things than your NP does, since this isn't exactly her specialty.

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For me that seems to be the case. I've have times like these before, but never this intense, or long. Usually my HAs come and go for maybe 2-3 days and never got past level 7 for pain wise. When I went to the NP on Wed I thought I was going to find out I had tumors or something else wrong. I was also scared to go in cause I thought she would think I was faking since by the time I got an appt the worse part was over. I only had what yall call the shadow. I had seen our dr before for them and he said it was a problem with my sugar level that was causing the HAs. The NP at least listened did a little research, checked me out and figured it out.

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In the course of all this and reading different websites and such, I found out that while the dr was saying it was a problem with my blood sugar, they were CHs. I would check my sugar when I was getting this way before, find it running extremely low sometimes only 40, nothing would bring it up to normal levels. We found an article by a neurologist that says the Chs can cause false readings for BS and BP, as well female hormones if taken at the time of an attack. For me that seems the case too. I guess thats why I have been misdiagnosed for so long.

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The NP at least listened did a little research, checked me out and figured it out.

Well big 'ol kudos to the NP for going the extra mile like that!  [smiley=thumbup.gif] It would be great if we saw more of that sort of thing happening - there certainly would be a fewer misdiagnosed CH'ers out there.

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