Jump to content
ClusterBusters
Sign in to follow this  
Latestarter

New to CH and the forum

Recommended Posts

I am a 61 year old woman who started with CH on 22 September this year. I gather that my age and gender makes me a bit unusual to be starting with this awful condition. I am still to see a neurologist (can't get an appointment until January), but two doctors agree with the diagnosis and my reading on CH appears that they are right.

So far none of the few meds given to me to try work and I feel overwhelmed as it is consuming my life. I awoke at 3.15 am (Australian time), with what I would say is about a Kip 7 (mildest level for a while) and got up because I can't just lay awake in bed, in pain, in the dark feeling alone and don't want to disturb my husband.

My daughter has told me about MM - she read about this somewhere, but I am too nervous yet to explore this option.

Another concern for me with my CH is what happens to my eye during the CH period. Since I started, my eyeball is permanently bloodshot and regularly swells on the outside white of the eyeball, so that it is very noticeable to other people and I can even see it looking out, if that makes sense. I wondered if anyone else has this symptom and will it damage my eye?

The pain is subsiding now and hopefully I will be able to go back to bed because I am exhausted - had a very bad week and not a lot of sleep.

Share this post


Link to post
Share on other sites

Sorry you had to find us but glad you did.

I always had the bloodshot eye, sometimes less sometimes more and it was more or less continuos when chronic. MM terminated my chronic state and brought me right on to PF living.

Here are some options to consider meanwhile you research and read more about MM

Oxygen is the best attack treatment (for attack abortion)

http://www.clusterheadaches.com/O2/index.html

Vitamin D regimen can be of great help (for breaking a cycle and for prevention)

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

And so does the Herbal Protocol (mostly for shadows and aborting attacks)

https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol

RC seeds is the featherweight form of busting (for breaking a cycle and for prevention)

https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1357378289

Ever since I broke my chronic CH with MM I have been staying PF with these options.

I have chosen them because the medications not only did not work too well, had lots of dangerous side effects most dangerous one of them was extending my episodes year by year and in the end turning me chronic. Sadly, medications are made for other conditions and treat symptoms only where as in these alternatives affect the causes.

Wishing you all the best

Share this post


Link to post
Share on other sites

Not much to add to Tony's great post . . . just a few additional things:

(Here just reinforcing Tony).  Your doctors should have prescribed oxygen.  You should insist on it.  It's treatment #1 for anyone with CH.

Drinking an energy drink (such as Monster or Redbull), energy shot (such as 5-Hour Energy), or a strong cup of coffee at the first sign of an attack can reduce the severity of an attack or sometimes even abort one.

Some people find that melatonin at bedtime helps.  Many start at 9-12 mg. and work up, even as high as 20 mg or more.

The pharmaceutical medication called Imitrex in the US (injectable sumatriptan) helps a lot of people abort attacks.  As Tony said, a lot of the prescription meds can have bad side effects with long-term use, but you're not in a position yet to be busting, so at least for now you might try some prescription stuff.  Prednisone tapers work well for some people, and verapamil also works for some. (Don't know what you have already tried.)

When Tony describes RC seeds as the "featherweight" form of busting, I don't believe he's describing its effectiveness, but its psychedelic effects.  RC seeds are a very effective way to bust cluster cycles -- but they can be taken with very little psychedelic effects.  (I have a vague memory, however, that it might be illegal to import RC seeds into Australia.  If you're interested, we can check.)

So sorry that you're dealing with this now . . . oxygen plus busting will help a lot in the long run; maybe some of these other things will help soon.

Share this post


Link to post
Share on other sites

Thanks to Tony and CHfather for your responses and encouragement. I will look into your suggestions. I am currently on Verapamil and have been told to stay on it until I see the neurologist - doesn't appear to be helping though. I had a week of Prednisone with the Verapamil when I was first hit with CH and the headaches ceased - or were they about to cease at that time, who knows. I have not been given the Prednisone since, I think due to the side- effects. I have tried coffee but may have done so too late - I did have trouble distinguishing between shadows and actual 'attacks' early on. I seem to have at least one attack per night (up to 2 to 3) and lasting from one hour to two and a half hours. They all seem to last a life-time.

Share this post


Link to post
Share on other sites
I had a week of Prednisone with the Verapamil when I was first hit with CH and the headaches ceased - or were they about to cease at that time, who knows. I have not been given the Prednisone since, I think due to the side- effects.

Prednisone is very effective at stopping headaches while you are on it. But it isn't safe to take too frequently -- that's why you haven't been prescribed again. Some doctors will only prescribe every 6 months. Others are much looser.

-Platy

Share this post


Link to post
Share on other sites

I was on prednisone 8 months out of the year and it did a total carnage. After that IV only on 1000mg amounts. Even bigger carnage. Unable to recommend to anyone for CH.

Share this post


Link to post
Share on other sites

please read the article about oxygen that tony linked to (you can also find it under the MENU tab on the left side of this page) and get back to your doctor and insist on oxygen.  you can also create your own oxygen system using welding oxygen.  oxygen is essential for aborting CH attacks.  (also, most people consider energy drinks more effective than just coffee for aborting.)

Share this post


Link to post
Share on other sites

3 last nights I have aborted every hit with Liquorice Root only (though I am taking it too much if I take it as preventative daily as well). But it truly is a powerful herb. Saving my O2.

Share this post


Link to post
Share on other sites

I just wanna back up the kind souls who have responded so far - I'm in agreement about RC being a not scary alternative for those who might find MM scary, about prednisone being extremely dangerous/damaging when over prescribed, and the value of O2, energy shots, etc.

will it damage my eye?

I doubt it. I'm not a medical professional, but it's a common symptom and I've never heard of anyone suffering sustained damage. At least that's one thing you don't really have to worry about.

I gather that my age and gender makes me a bit unusual to be starting with this awful condition.

Meh, we've seen plenty of CH'ers here who've experienced onset later in life, and lots and lots of females too. Personally I suspect the percentage of female sufferers is higher than the medical establishment believes - I think here could be a vicious cycle where MD's are taught women don't get CH, so they won't diagnose them with it. I've seen way too many females reporting major problems and delays getting a diagnosis due to their gender.

Share this post


Link to post
Share on other sites

A bit off subject but several CH patients (myself included) who have had their eye pressures measured and being very abnormally high, especially during hits and especially if being high for long periods of time relate this to poor sight in other eye and other eye conditions. I believe extremely high eye pressure is CH related for some of us (if only in the same side eye where CH is) and that it may cause damage. Neither has been confirmed by any of our doctors though, they don't believe in it.

Share this post


Link to post
Share on other sites
I suspect the percentage of female sufferers is higher than the medical establishment believes - I think here could be a vicious cycle where MD's are taught women don't get CH

and they assume woman w/ headaches = migraineur.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×