Unsure, can anyone help?

13 Sep, 2012 - 3:13 pm

Hi there, I am really unsure if I truly do suffer with cluster headaches and Im wanting your opinions.
I finally got into see the Neuro back in July and she said without a doubt they are clusters... I have suffered the same type of "headache" since I was 19/20, I am 26 now.
It has always been the same type of pain; intense pain on the right side back of my neck, blinding pain just above my right eye, block right side nostril and sometimes my right eye is watery and feels droopy.
This month I have had 6 attacks; last month 11, July I had 17, June 12 attacks and so on, the thing that makes me unsure is that my attacks can last the whole day and not in short spurts or several times a day, at the most I have two attacks in one day.

I can handle the intense pain above my eye but its the neck pain that is unbearable, its hard to explain the pain in my neck, but its like something in my neck just squeezing my muscles and tendons.

The only things that seem to get rid of the pain is Relpax 80mg and Endone 5mg. My Neuro put me on Verapamil 180mg once a day.
This week has been unbearable on Monday it took 3 Relpax and 2 Endone to disperse the pain, only to come back the next morning.
On Tuesday my reg GP put me on Endep 10mg - 30mg. I have been in hospital endless times only to get Morphine, great at first but wears off after 2 or so hours.
The pill combo I am on at the moment seems to be the best, not going to list the other endless drugs I have tried, I am beyond depressed and so scared that the headaches are getting worse and worse and there is nothing out there that will help me.

I am considering Botox, at this point I am willing to try anything.

I feel so alone and my poor partner deserves so much better and to have a happy, fun loving girlfriend. Sorry this post is so long, I have so many questions and so much to say, just wondering if there is anyone out there that can help me? This post was edited on 15/09/2012 at 11:47 am

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14 Sep, 2012 - 7:11 am

Hi Tasha,
very sorry to hear you're in the wars. i don't know if we can help you per se, but we can give you some support and a shoulder to cry on.

First, you should understand that suffering from one type of headache doesn't exclude you suffering from another type (or more), so there could be some other type of headache on top of CH. CH can cause tension type headaches, but they must be treated differently.

There are many different drugs for treating CH, if one doesn't seem to be doing any good, ask your doctor to try you on another one. For example- you take Relpax, which is eletriptan. The triptan group of drugs is commonly used for treating CH, but not all of them work for everybody. Ask your doctor to switch you to Sumatriptan (Imigran), which is the oldest variant, and is available in fast acting pills, nasal sprays and injections. Beware though- You MUST wait at least 24 hours when swapping between one triptan and another.
Ask about oxygen. If you take oxygen at a very high rate, right when an attack starts, it can stop an attack in it's tracks- but this will only work for CH.
If you don't already, start a diary tracking your headaches. When they start, when they stop, what meds you took, intensity and location, other factors such as bushfires in the area, a fuel spill; all that sort of thing. You must be totally honest and accurate though. The more information you can give your doctor, the better decision they can make.

Be VERY careful about using narcotic painkillers. They usually don't do much to help with CH, but addiction is the same for CH sufferers as for anyone else, and you don't need that extra problem on your plate too.
Lastly, read up on as much information as you can- perhaps there's something your doctor has missed; your knowledge might help them help you.

That's it for now- good luck to you Tasha.
cheers peter.

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14 Sep, 2012 - 5:23 pm

Hi Tasha,

Sorry you are in such pain.
You reported relief from using Endone, morphine and you say most pain is in your neck, which says to me that you may not have CH, but it sounds like terrible pain, nonetheless. Most CH does not respond to Narcotic or Opiod treatments. I have had attacks cut straight through morphine and Endone like it was not there. Narcotics are a waste of time treating CH, a Neuro worth their salt would know this... Attacks that last the whole day are not usually diagnosed as CH either.
Strong opiods can also make the problem worse and more difficult to manage, introducing the possibility of "Analgesic rebound headache" and Opiate withdrawal into the equation.

IHS diagnostic criteria says a CH attack is a shorter event and most of us patients report CH attacks of duration between 30-180 minutes.
As Peter says there are many different types of headache.
I don't want to sound dismissive and I may be wrong, but Neck pain during an attack is not something I hear reported by CH patients.
It may be a Cervicogenic Headache (of neck origin).
It could be a tension-type headache, or one of many others.
Then again, it could be one of those wonderful CH variants that causes referred pain in the neck, but usually, trigeminal autonomic cephalagias occur at supraspinal level (above the spinal chord).
No 2 of us seem alike.

It would be interesting to see if your headache responds to Indocid.
Other headaches of longer duration like Paroxysmal Hemicrania or Hemicrania continua can have CH -like symptoms, but attack frequency and duration are different to CH. A Neuro can make a differential diagnosis by using Indocid (Indomethacin), if appropriate. O2 could help in correct diagnosis too, if you respond well to O2, it may well be CH. It looks like your Neuros have some diagnostic work ahead of them!

Scans should also be done, to rule out any anomalies.
A Head CT, usually does not include the neck, I have had to have separate CTs each for my Head, Sinus and Neck in order to rule out other causes.
I think it would be important to rule out neck involvement in your particular headache.

The Endep is pretty standard chronic pain treatment these days.
It has the added bonus that many people report some CH relief from low-dose Endep 10-20mg. I have cranked Endep up to 250mg before, still with blinding CH, but 20mg seems far more effective for me. At least you can get some relief from depression and maybe a better sleep at night.

Check out the IHS headache types: http://ihs-classification.org/en/
You may see a list of symptoms exactly like yours, which will be very helpful in correct diagnosis. Unfortunately, a headache symptom can't be picked up in a routine scan or a blood test. Diagnosing Headache conditions can only be done by a Doctor who is listening carefully and taking a detailed patient history, they can only work with the symptoms you report to them verbally.

Hope this is of some use to you.

Cheers, Ben.

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15 Sep, 2012 - 12:12 pm

Hi Tasha
Welcome to your new home.

You have been given some very good advice by the others especially Ben, he's our built in bible as far as meds go.

There's a heap of info on here so read up, an educated clusterhead hurts less.

Cheers
Barry

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18 Sep, 2012 - 4:28 pm

Tasha said:
"Hi there, I am really unsure if I truly do suffer with cluster headaches and Im wanting your opinions.
I finally got into see the Neuro back in July and she said without a doubt they are clusters... I have suffered the same type of "headache" since I was 19/20, I am 26 now.
It has always been the same type of pain; intense pain on the right side back of my neck, blinding pain just above my right eye, block right side nostril and sometimes my right eye is watery and feels droopy.
This month I have had 6 attacks; last month 11, July I had 17, June 12 attacks and so on, the thing that makes me unsure is that my attacks can last the whole day and not in short spurts or several times a day, at the most I have two attacks in one day.

I can handle the intense pain above my eye but its the neck pain that is unbearable, its hard to explain the pain in my neck, but its like something in my neck just squeezing my muscles and tendons.

The only things that seem to get rid of the pain is Relpax 80mg and Endone 5mg. My Neuro put me on Verapamil 180mg once a day.
This week has been unbearable on Monday it took 3 Relpax and 2 Endone to disperse the pain, only to come back the next morning.
On Tuesday my reg GP put me on Endep 10mg - 30mg. I have been in hospital endless times only to get Morphine, great at first but wears off after 2 or so hours.
The pill combo I am on at the moment seems to be the best, not going to list the other endless drugs I have tried, I am beyond depressed and so scared that the headaches are getting worse and worse and there is nothing out there that will help me.

I am considering Botox, at this point I am willing to try anything.

I feel so alone and my poor partner deserves so much better and to have a happy, fun loving girlfriend. Sorry this post is so long, I have so many questions and so much to say, just wondering if there is anyone out there that can help me? "

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18 Sep, 2012 - 4:33 pm

Just for interest sake... I am on 980mg of veracaps, 500mg of tegretol, 10mg naramig. I only oxygenate once a day, if that. Just had Botox this Arvo from my Prof for the first time. Let's keep the fingers crossed...

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18 Sep, 2012 - 4:50 pm

Hi Guys, wow great advice thanks so much! Ben thanks for your great post, will check out that site! I was able to have break on Sunday and Monday from the attacks, which was great, had a mild one today but the Relpax did the trick. I'll get back to you about the meds I have tried, just cant think atm. Its just great to know that I have someone to talk to, thanks guys I feel like part of the family already LOL!!!This post was edited on 18/09/2012 at 4:53 pm

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17 Oct, 2012 - 9:14 am

If it helps - I get neckpain with mine too but it's not directly associated - more I hold my head at weird angles and tense neck/shoulder muscles unconsciously when in an attack and so after a a week or two of doing this almost 24hrs a day I end up with a secondary lot of pain that is harder to deal with than the damn headaches. I've found stretching/yoga, massage (some of my front of neck pain is actually referred pain from my shoulders) and taking anti-inflammatories for a few days helps manage it.
Best of luck xo

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18 Oct, 2012 - 9:05 pm

Hi Archgirl, welcome to the forum.
You raise good points. I've found the same thing, although I can't say it's worse than the original CH attack.
cheers peter

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19 Oct, 2012 - 1:23 pm

thanks for the welcome - I guess I find it worse because Imigran works pretty well for me as long as I'm taking the preventatives but nothing touches the neck aches!

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