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sugarplum89

needing some advice and help

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hello I'm new here and ive been struggling with headaches for a long time now. i get such a pain around my eye that spreads out to my forehead, nose and cheek. its nothing ive ever felt before and this normally lasts about two hours, 1-2 a day for about 2 months then disappears for roughly a year and a half then comes back. its really affecting my life and making me so depressed. the headaches started back up last week and I'm really struggling. ive been to my doctors loads for this and they tell me its a migraine event? but ive tried various painkillers, amitriptryline and now on propranolol which are making me feel very sick and nothing seems to help at all. I'm convinced this is cluster headaches but the docs wont treat me for it...is there anything i can do to get them to help me more? or could this be migraines? I'm at a total loss for what to do and the pain is unbearable, i dno how much more i can take of it. my thoughts are with all you people suffering this awful thing! any help, advice or tips on how to deal with this would be very appreciated. thank u  

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There's a recommended doctor list as the first post in this General Board.  You ought to at least look at that and see if there's anyone near you. At the least, try to get to a headache center, since many other docs, including neurologists, are quite clueless about CH (which sounds like it definitely could be what you have).

Standard meds for treating migraine are the same as for CH -- verapamil as a preventive and sumatriptan (preferably injectable) as an abortive.  Have you been prescribed those?  (Of course, oxygen works for CH but not well for migraine.  Oxygen can be prescribed, but you can set up an oxygen system on your own using welding oxygen if it comes to that.)

The vitamin D3 regimen, described in the ClusterBuster Files section, is very helpful for CH and for migraine.  You should very seriously consider doing that.

You can try quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack.   Melatonin at night, starting at 9mg and working up if you need more, helps many people with CH.

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The best advice I can offer is to read everything on this site. Find all the evidence you can that points towards cluster headaches. Then once your armed with knowledge make a decision that you feel comfortable with as to a treatment options. Of you find you have clusters thou you must obtain o2. As for the depression I've been there and I find solace knowing the situation is only temporary and there is hope and the people here can help.

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What they said. And as far as diagnosis is concerned I'll just re-emphasize the part about getting to a genuine headache specialist. Lots of CH'ers, especially females, have been done wrong by non headache specialist types, and been denied a CH diagnosis with disastrous results.

If you do have CH, well on one hand that sucks, but on the other hand you've found a place where you can get some super helpful input, and potentially beat this thing back dramatically, which lotsa CH'ers have done. 

 

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hey thank you so much for your replies. sorry I'm only just getting back to you all. ive had a pretty bad few days with them but I have been backwards and forwards to my doctors and hospital. I just cant not take the pain of them and he finally agreed cluster headaches. I was on propranolol and nefopams which as I'm sure you understand doesn't even touch the pain of them but I did get prescribed some verapamil (only just started today, how long do they usually take to start working?) and some nasal spray which did clear my pain in about half hour last night so that was some relief, I'm going to ask about injections. would you guys say they are better? also I was really sick with the taste of the nasal spray has anyone else found this? any tips on how to help with that taste?

its nice to finally be treated for what I have so I am feeling abit more positive. its great to have somewhere other people know exactly what your going through. ive had all sorts of diagnoses. I was told migraine, sinus and trigeminal neuralgia. when I looked that up and joined a forum, it just didn't fit with what I went through so I did more researching and saw cluster headaches, I knew that was it but trying to convince a doctor is much harder! one lady basically told me that men in their 30's or 40's get it so that cant be right. I started to doubt myself too but as ive found theres lots of young woman who also suffer it!

sorry just ranting on! hope you are all doing ok.

 

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Hi Shoog, Sorry I don't have much time for elaboration right now, I'll try to get to the point with my thoughts:

  • Triptan spray: If you're tasting it you're probably "sniffing" while using it, a mistake most of us make unless instructed otherwise. I recommend researching the instructions for it. Last time I checked, it's just supposed to go up into your shnoz, with no sniffing, not used like an actual inhaler.
  • Injections are widely known to work quicker, plus there's the major advantage of being able to use partial (but still very effective) doses, and stretch your supply / reduce your side effect risk dramatically
  • 100% O2, as you'll be instructed on the use of here, aborts attacks well without side effect risk or blocking other treatments.
  • Verapamil can work for some. More effective is "busting". It will sound crazy at first (well it did to me), but see the Harvard and (currently underway) Yale studies, etc., plus tremendous amounts of CH'ers who've found long lasting prevention relief with it, sometimes from a single dose, and you'll start seeing what a breakthrough it can be.
  • There's a "D3 regimen" that some find relief from, and it shouldn't interfere with anything else you're throwing at the CH.
  • You were discriminated against due to your gender, denied proper care, and left in unspeakable pain. That's horrible. Not that it was done intentionally, it was due to an old, stubbornly lingering misconception, but that kinda %&^$ has really gotta stop!
 
-Jeebs (not female, but still outraged. My dear mama taught me about gender discrimination :D)
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Jeebs has covered it exquisitely.  Read about D3 regimen and busting in the ClusterBuster Files section (busting is the numbered files).

Verapamil has to be monitored for effects on the heart when you start taking it, so the initial doses that are given are low -- usually too low to really help, although some people get good quick results.  Often a course of corticosteroids (prednisone, usually) is given to try to stop or reduce the pain while the verapamil takes effect.  See my google/goadsby reference two paragraphs down.

OXYGEN, OXYGEN, OXYGEN. Best and safest abortive.  Prescribed maybe 50 percent of the time by doctors, which is more of the %&^$ that's got to stop.  Insist on OXYGEN, or set up your own system using welding oxygen (if you decide to do this, we will advise you).

Google this (without the brackets): [goadsby treatment of cluster headache].  You'll see all you basically need to know about medical treatments.

A usual prescription for trigeminal neuralgia is Neurontin (gabapentin).  That also sometimes/often helps people with CH (though for most people the side effects suck).  Was that prescribed to you?  Did it help?

:):):) GOOD FOR YOU for persisting! :):):)    You are on the right path now.  A decent doctor would help.

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I see from your post elsewhere that you're in the UK.  A resource there is OUCH-UK (https://ouchuk.org/).  They post the European standards for CH treatment here:  http://pathways.nice.org.uk/pathways/headaches#path=view%3A/pathways/headaches/management-of-headaches.xml&content=view-node%3Anodes-cluster-headache

It's my understanding that they have helpful advice at that site for being sure you get oxygen.  You'll have to dig for that on your own, but I think you'll find it.  Maybe some of our UK members here will pitch in with advice.

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You all have such good advice and know exactly what your talking about! I'm guna do some reading on the d3 thing and check that out. If I'm confused i will come back to you with questions. Making my own oxygen set up sounds like it might be quite hard? But I have heard of ouch from looking up cluster headaches so I will go back and get the info for the oxygen and take it with me to the docs on Tues. 

Your right that this stuff needs to stop cos it's holding back pain relief for people. And this is not something anyone should be left to suffer with. I'd never heard of it before any of this and most people haven't and the doctors seem clueless to it! I know it ain't life threatening but it certainly affects your whole life while your in a cycle, I can't imagine how chronic people manage. 

I did read the instructions to my nasal spray lol and it does say to spray and breathe in through your nose, out through your mouth, I think I was just worried it would run out my nose and not work! I'l really try not to sniff it back so much and see how I go but I will also ask on Tues to have injections, they sound much better. Just take the bad taste for a few days, better than the pain! Thank you

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Jeebs mentioned that the injections can be split.  That's true.  The point there is that most people need only 2 or 3mg to stop an attack, but the autoinjectors hold 6mg.  (More %&^$  that serves the pharma industry wonderfully but harms patients physically and financially.)  Taking the autoinjector apart seems to be easy for some people but quite challenging for others (me, for example).  There are autoinjectors with 3 or 4mg, and it is also possible for a doc to prescribe vials of sumatriptan and syringes, so you can measure out your own doses.  If your doc is at all amenable, ask about these options.  I have the impression that there might be a new kind of autoinjector that uses no needle (???), and that can't be split.  You definitely don't want that.

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Sugarplum, you probably experienced what a lot of women do... Doctors like to deny that women get CH because it's a 'man's disease'.

Just like they claim men don't get migraines as often as women. It's not known exactly what the ratio is, probably because a hell of a lot of women are misdiagnosed or UNDERdiagnosed.

I've had excellent neurologists try to tell me how rare it is for women to have CH years ago. Like, seriously? You don't see that many of me?! What the hell are you doing, bro?! I've had doctors straight up tell me that women don't usually get those. So yeah. It's normal for us not to get diagnosed right away.

Call your neurologists office and ask for the Oxygen. They should know how much to prescribe.

You should also get an MRI or CT scan if you haven't already, to rule out other issues. Just in case. I know it sounds like a pain, but if you haven't done it, it's good to do. There might be something causing cluster-like headaches and your problem could be completely fixable. Or it might be an indication of an illness that they need to treat and just haven't discovered yet.

Much love, and I hope the Verapamil has kicked in, dear.

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Also, energy drinks to abort!! If no one has mentioned it, you can drink one pretty quick. Energy drinks or shots. Just make sure it has caffeine and taurine in it, so long as you don't have heart problems!

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I've found 200mg caffeine pills to help abort...along with an NSAID pain reliever. Just don't take on an empty stomach.

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