Jump to content
ClusterBusters
Lewisjones

Diagnosed with Cluster Headache

Recommended Posts

Hi everyone, for the past two months I've been suffering with a sever headache, trips to the local GP and to the hospital to do CT scans show nothing irregular. At first I tried some over the counter medication but nothing worked, the GP tried giving me naproxen and amitriptyline after complaining about the pain and that I was being woken up during the night with it but they did nothing. The doctor finally suggested I might be suffering with Cluster headaches. When the pain comes, my temple on the right suddenly starts hurting, my eyelid droops, my nose runs and my eye waters. The pain itself is sharp but mainly stays around the temple area and occasionally drifts behind the eye. The doctor prescribed me Sumatriptan tablets and Pizotifen which seem to help somewhat. My only problem is, after the diagnosis I was obviously curious about cluster headaches. I started to learn more about it and I can't help but feel I've been misdiagnosed. 

I've seen videos of people with cluster headaches, graphic descriptions of the pain and I can honestly say I am nowhere near. The pain I experience is debilitating and I often have to stop what I'm doing (Or do it very wrong) but I've never had to drop and scream, never once thought it was the worst possible feeling. I'm curious if Cluster headaches are a constant level of pain everytime they come about. Do they vary in how painful they are? Can you get a mild cycle? If so, is it possible I do have cluster headaches and the first experience of it is just a mild case and should I expect something much more sever later on?

If no, does anyone have any suggestions what else I could be suffering from?

 

I also asked my doctor to refer me to a neurologist only to be told there is a near two year waiting list and I've not the spare cash to book a private appointment. 

 

Many thanks,

Lewis.

Share this post


Link to post
Share on other sites

Hi Lewis, I have been suffering from ch for about 4 years. However, they do not come in clusters and have had them multiple times almost every day. They started out with pain in my jaw, teeth. Over time they migrated to my head, eye etc. They have gotten increasingly  more painful as time goes on. Your symptoms sound like ch, watering in one eye, nose.  I have tried  nerve blockers, with minimal success.  Sometimes they are more painful  than other times,  sometimes almost tolerable, sometimes the pain literally  brings me to my knees.

I hope you find something that relieves your pain. I have been resisting taking mushrooms, but just found a source and will be trying them soon.

All the best

Laurie

 

Share this post


Link to post
Share on other sites

Lewis',

You might have a hemicrania, such as hemicrania continua, which is treatable with a medicine called indomethacin.  Given that you have CH-like symptoms without CH-level pain, it would be worth checking that out, I think.

Share this post


Link to post
Share on other sites
14 minutes ago, CHfather said:

Lewis',

You might have a hemicrania, such as hemicrania continua, which is treatable with a medicine called indomethacin.  Given that you have CH-like symptoms without CH-level pain, it would be worth checking that out, I think.

Thank you CHfather, I will go to my gp and ask him if I could try indomethacin. I had Neproxen which is also a  nonsteroidal anti-inflammatory drug but that did absolutely nothing. The pain is steadily getting worse as time goes by though. Each time it comes it feels that little worse. Perhaps I'm just tired of it and responding to it more now, but any help is appreciated, thank you.

Share this post


Link to post
Share on other sites

For most people, from what I have read (which is a lot), it seems that early CH attacks are very severe, more severe than what you are experiencing.  I'm sure that for some they start out milder and ramp up over time.  Practically everything about CH is a mystery.

Indomethacin seems to be a very strong NSAID. It causes digestive-track issues that are more significant than naproxen, for example.  It is specifically recommended for hemicranias (not NSAIDs generally).  Sumatriptan tablets are generally useless for actual CH attacks.  They take too long to get into the system.  Nasal sprays work for some; injections are the most efficacious (but not without significant side effects).

As Potter said, inhaled oxygen is a highly effective abortive for CH attacks.  If you have CH, that is what you must have.  I'm hoping that maybe you don't have CH.

Share this post


Link to post
Share on other sites
4 minutes ago, CHfather said:

For most people, from what I have read (which is a lot), it seems that early CH attacks are very severe, more severe than what you are experiencing.  I'm sure that for some they start out milder and ramp up over time.  Practically everything about CH is a mystery.

Indomethacin seems to be a very strong NSAID. It causes digestive-track issues that are more significant than naproxen, for example.  It is specifically recommended for hemicranias (not NSAIDs generally).  Sumatriptan tablets are generally useless for actual CH attacks.  They take too long to get into the system.  Nasal sprays work for some; injections are the most efficacious (but not without significant side effects).

As Potter said, inhaled oxygen is a highly effective abortive for CH attacks.  If you have CH, that is what you must have.  I'm hoping that maybe you don't have CH.

During my initial discovery of the headaches I did have a trip to A&E where the doctor gave me a bit of grief for coming in with a 'headache'. He did put me on an oxygen tank then and there which did help alot. I had asked my GP about it but he asked me to take the Sumatriptan tablets when I feel it coming on and the pizotifen before bed. I will do some research into  hemicrania headaches and inform my GP. Thank you again CHfather.

Share this post


Link to post
Share on other sites

I do have a neurologist,  and am being treated at a headache clinic. I have tried sumitriptans, steroids, nasel spray, oxygen,nsaid,  nerve blockers, rizotriptans (maxalt), Verapamil, and anything else that is supposed to help.Nothing gives me any relief.  Believe me, I am in excruciating pain everyday. I have had mri and ct scan to rule out any thing else. It always occurs on left side, watery eye, nose, stabbing eye pain, and it feels like someone is drilling into my head.  Yes they are chronic CH. Sorry for posting, hoping for some support, but I guess this site is not what i thought it was.

Laurie

Share this post


Link to post
Share on other sites

CHFather, my pain is at the point where I no longer want to live with it. I have concidered suicide many times. Guess thats not enough pain for you. It has ruined my life, I have lost friends, and my family have basically disowned me, and I cant hold a job. I have these EVERY DAY! I wish they would come in clusters so I would have some relief, like others on this site. Guess I dont know what Im talking about, guess you do. 

Share this post


Link to post
Share on other sites
21 minutes ago, Laurie said:

CHFather, my pain is at the point where I no longer want to live with it. I have concidered suicide many times. Guess thats not enough pain for you. It has ruined my life, I have lost friends, and my family have basically disowned me, and I cant hold a job. I have these EVERY DAY! I wish they would come in clusters so I would have some relief, like others on this site. Guess I dont know what Im talking about, guess you do. 

Laurie, my posts were responding to Lewisjones, who started this thread.  Honestly, I can't think of why you thought I was responding to you or somehow dismissing your pain. No one here would do that.  You say that you have tried everything, and you are about to give shrooms a shot.  Lots of people have come here having tried everything, at their wits' end . . . and found that busting gave them their lives back.  I hope that's true for you.  You don't ask any questions about busting, so I'll assume you have read the files and know what you are doing.  I can imagine that maybe you have not done the vitamin D3 regimen, which has helped a lot of people, including many with chronic CH.  It's described in the ClusterBuster Files section. 

Share this post


Link to post
Share on other sites
2 hours ago, Laurie said:

I do have a neurologist,  and am being treated at a headache clinic. I have tried sumitriptans, steroids, nasel spray, oxygen,nsaid,  nerve blockers, rizotriptans (maxalt), Verapamil, and anything else that is supposed to help.Nothing gives me any relief.  Believe me, I am in excruciating pain everyday. I have had mri and ct scan to rule out any thing else. It always occurs on left side, watery eye, nose, stabbing eye pain, and it feels like someone is drilling into my head.  Yes they are chronic CH. Sorry for posting, hoping for some support, but I guess this site is not what i thought it was.

Laurie

Lighten up.

 

       Potter

Share this post


Link to post
Share on other sites

So I went to ny doctor this morning and told him about the other condition. He said it could possible be so but he wants me to stay with my current meds so that there is bo confusion if something starts to work.

 

I was in a bad way this morning though, pacing around my place swearing all sorts. Does everyone experience the same curled up in a ball, screaming and crying pain or do they vary from time to time? 

 

I discovered the kip scale and Id say the pain varies from 5 to 8. Never experienced anything less or more when they come on.

Thank you for the help guys

Share this post


Link to post
Share on other sites

Lewis', you are getting really bad advice from your doctor.  He is responsible for the way you are suffering right now.  For one thing, indomethacin works for hemicrania, but it never or practically never works for cluster headaches.  So if it worked (or didn't work), there would be no confusion.  And as I have said, sumatriptan tablets are useless for at least 85% of people with CH.  Pizotifen (which I have not read of being prescribed to a CH patient before) is not even a first-line treatment for migraine (from Wikipedia, which is actually quite reliable regarding medical conditions: "it is usually not the first choice medicine for preventing migraines, instead being used as an alternative when other drugs have failed to be effective.")  I don't know what to tell you, except that you need a decent doctor who gives a crap about your suffering. There are standard resources that every doctor has that tell him/her what effective prescriptions are for various conditions: If your doctor consulted that, you wouldn't be getting useless medicines.  There is a list of recommended doctors as the second pinned post at the General Board.  (The standard pharma prescription is oxygen to abort, injectable or nasal Imitrex for breakthrough attacks, and verapamil as a preventive. A doctor could also put you on a course of steroids such as prednisone, which often takes away the pain for a few days and serves as a "bridge" while the verapamil dosage is leveled up.)

In the short run: Many people with cruel idiot doctors are forced to set up their own oxygen systems using welding oxygen.  You could do that, particularly since O2 helped you in the ER.  You should start the vitamin D3 regimen that's described in the ClusterBuster Files section. You could try melatonin at night, starting at 9mg and working up to the level that works for you.  Try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack: for many people, that will reduce the severity of the attack or even sometimes abort it.  Some people find that putting their feet in very hot water in a bathtub during an attack helps them.  Not having oxygen, some people find that sticking their head in the freezer or up against a full-blast air conditioning vent and breathing deeply can help. 

For the longer run, you should give busting some serious thought (read the numbered files in the ClusterBuster Files section).

I hope some of the stopgaps help you, and I really hope you will find a better doctor.

Share this post


Link to post
Share on other sites

Thank you again for being so helpful. Im going to push for a oxygen tank and rebreather mask through my doctor or by any other means. He came across as having very little knowledge about it and even admitted I would be better off seeing a specialist but I dont think I can manage the two year waiting list wkth out some relief.

 

Ill be looking over the files to see what else I could use to help. Many thanks again mate.

Share this post


Link to post
Share on other sites

non-rebreather mask.  Good for you for fighting for yourself.  Remember that welding oxygen is an option that many (~20%) of people with CH use.  You get the tanks from a welding supply place and the mask and regulator from Amazon, Ebay, or another internet site. 

Why the hell can't he just look it up if he lacks knowledge.  Criminey.

Share this post


Link to post
Share on other sites

Thats what I had thought. I was asking him questions such as would oxygen affect a hemicrania as it would a cluster headache, how long hemicrania tend to last and if the bouts come about around the same time of day and night and all sorts of questions about clusters but he had no answers to give me. Im worried that once he is satisfied that sumotriptalin just doesnt work fast enough and he gives me indomethacin , then I could be left without anything while he preaches I finish them.

My head is all a bit foggy from the restless nights but I think Ill chase o2 up with or without the doctor. 

Share this post


Link to post
Share on other sites

Welcome to the community Lewisjones! 

From some of your comments and the vernacular used, I'm guessing you're somewhere in the UK under NHS care? If so, Chf's advice regarding welding oxygen may not work for you.....however, under NHS guidelines, high flow oxygen is recognized as a front line treatment for clusters......contact OUCH-UK for help getting the HOOF form sorted out and whether your doc likes it or not, he's bound to supply you with O2.

Dallas Denny 

Share this post


Link to post
Share on other sites

Thank you so much for your help guys. I'm in the process of trying to get some O2 as quick as possible. Also, I keep seeing the the word 'Shadows' thrown about on the forum. Is this referring to the mild lingering pain before/after the pain really kicks up a notch?

I just want to know so I can explain better to my doctor/employer. I've had to take time off work as I work in a shop and trying to put on a smile when I feel like banging my head is literally driving me insane, even after the pain fades I still get these little twinges and throbs afterwards that ontop of being exhausted and tired just make everything so much harder.

Thank you again.

Share this post


Link to post
Share on other sites

download the app registeryourjourney and keep track of attacks, medicine use or anything you do to feel better. This way you can inform your specialist better and you get more knowledge of how you are doing.

I made the app myself and hope you can use it.

Maybe it can spedd up any diagnose for you.

 

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

×