Another newbie here

[Berkonic]

Hi,

I was directed here by from a friend who suffers from CH. I have been having headaches on only my left side for about 4 years now and presumed they were sinus related (caused, I thought, by the fact that I had some badly rotten molars removed on the left side about 4 years ago). My new PCP suggested yesterday that they were trigeminal neuralgia, but when I researched that online the symptoms didn't add up; as a result I stumbled on CH descriptions and man, did they fit the bill!

I would appear to be a chronic—though random—sufferer. I can go a month or two sometimes with no CH, but then I have periods when I will have 2–5 bouts in a week, or even 2–3 in a day. I've had a few horrible nighttime "wakey-wakey" attacks also. Usually my CHs hit in the evening, around 8–9 PM, but there's no distinct pattern; I occasionally get them in the morning or midday. Some weeks are agony with repeated CHs; other times I can go a month or two w/no attacks at all; again, there never seems to be a discernible pattern, and I'd be hardpressed to pinpoint a "trigger." I am a smoker, though, and I gather that that can be a huge overall trigger. (Am contemplating quitting soon, for a host of reasons.)

I've read Les Genser's 13-page licorice root treatment protocol with great interest, but I'm unclear on two things:

1. Because my CH attacks don't follow any distinct pattern and are so random, how and when should I implement the protocol, and how/when should I taper it off? Unlike some people, I don't get long-term warning signs per se, other than that 10 minutes or so at the beginning of a CH; and I can't "clock" on a monthly/yearly/seasonal basis when I will have a CH.

2. I'm on some prescription medications, and at least one of these I can't discontinue: Lipitor, for my sky-high cholesterol. Would that be contraindicated with licorice root and/or skullcap? Other scrips are for Nasonex spray for sinuses; Protonix stomach acid reducer (as needed); and Ativan (lorazepam; as needed, for occasional anxiety/sleeplessness—not very often lately); and OTC Zocor or Allegra (alleries, as needed) and fish oil (heart health/cholesterol); any of these I could probably discontinue for a period of time for the licorice root treatment, but not the Lipitor or fish oil.

As an aside, I did once or twice take an Ativan during a CH attack, thinking if I could fall asleep the pain might be lessened. It seemed to help—not only in easing me to sleep but also in that it seemed to relax me and thus ease the pressure/pain in my skull. Has anyone else experienced this?

I'm blessed on one level: though my CH attacks are most often excruciating, they almost always last only about 20–30 minutes, so I sit upright (lying down def. seems to make them worse), turn the lights down, minimize noise/sound, and sit the attacks out, knowing that in a half hour I will feel better.

Any and all advice much appreciated; will also look into oxygen treatment if I can convince my PCP of it (and assuming my insurance will cover at least part of it).

Thanx,

B.

[CHfather]

B, just a couple of quick thoughts.

1. You should probably send a PM (private message) to Les to get answers to your licorice root questions.  Can't say for sure that Les will respond, but here's the way to send that PM: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=imsend;to=464F59754D4F44594F582A0

2. (This actually should be #1)  Since your new PCP didn't know the difference between TN and CH, you want to see a headache specialist ASAP. (Not just a neurologist, but preferably a headache specialist.)  If you have CH, you will, as you say, want to get oxygen prescribed right away.  For most people, it's a very effective abortive.  But there are other conditions that look like CH but are something else, and require different treatment.  So a good diagnosis is absolutely essential.  Here's a US list of doctors recommended by people with CH: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2001-27-2012.pdf

There are separate lists of Canadian and "worldwide" doctors at the same site.

(BTW, my daughter lived with a TN diagnosis for several years before we researched and found she had CH, not TN. Also, in the beginning, my daughter's experience was like yours -- she could just endure her attacks, which didn't last too long.  Then they stretched to hours.  So get on top of this now.  We're all hoping that a "cure" is on the horizon, but in the meantime, you want to be fully armed.)

3. There are some documents in this file that might help your PCP--if you want to go back to him/her and request oxygen--to understand how fundamental O2 is for treating CH (you could print out the JAMA article and bring it with you, for example): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

4. Did your doctor prescribe anything for the TN?  Some drugs prescribed for TN (such as the antiseizure drugs Neurontin and Lyrica) can also sometimes help with CH.  Not many people would recommend them, if only because the side effects are so awful, but you might consider trying them if you feel the need for something in the short run that might help.

5. Smoking isn't good (in case you were wondering ), and some people (including Les Genser) argue strongly that stopping smoking is important for a systematic treatment of CH.  So quitting is a good idea.  But most people who have quit have not found that it affected their CH much.  Alcohol is a much more common trigger, but lots of things are triggers for lots of people.

5. If your system can handle it, drinking an "energy drink" at the start of an attack can be quite effective for quelling them.  RedBull or Monster, for example -- something high in caffeine and taurine.

Good for you for finding this site and reading and asking questions!  Keep it up.  The great folks here will help you.

[Berkonic]

Thanks, CHfather, for that wealth of info!

No, my PCP didn't prescribe anything for TN—in fact, he seemed reluctant to do so. He suggested I keep a journal of my supposed TN attacks/circumstances/triggers, etc., as he did for periodic bouts of vertigo in recent months, which seemed to have stopped as of this month (of course, that brings me to another question—whether any CH sufferers have also had problems with vertigo). He did mention antiseizure meds as a possibility for the future, though, if the TN was bad enough.

As a result of the vertigo I was experiencing, my PCP ordered a CAT scan of my sinuses, and there was no sign of sinusitis/inflammation—which I had long guessed to be the culprit in my headaches as well as the vertigo.

I will schedule another (sooner) appt. with my PCP, and discuss headache specialists, oxygen treatment, etc. Now that I have an inkling that these headaches are actually CH, I don't think I want to wait until my next scheduled appt—in May. In the meantime I think I will try the licorice root, as I stand nothing to lose from it, it's affordable, etc.; it has worked very well for the friend who referred me here.

Thanks again!

B.

[Brad]

Welcome Berkonic,

Yeah, they gave me tegretol (anti-seizure) which was some nasty stuff.  I told him that I suffered from CH and not TN but he wanted to try it anyway.  I was towards the end of my cycle anyhow, so we will never know.  But I swear it triggered an attack after every dose beyond the second week.

You found the right place, there very informative and empathic people in these parts!