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Posted 11/26/2007 2:44 PM (GMT 0)
I have just recently been diagnosed with cluster headaches.I have been having headaches on one side on and off for approx 15 years.I have been researching ch but i don't think i do suffer from these .My headaches started again a week ago after only a 1 weeks break from headaches that were on and off for 3 weeks.

My doctor prescribed 100mg imigran though it did stop the headache it gave me horrible side effects i felt like i was having a heart attack,very sore throat,and my tongue felt like someone had tried to wrench it out.This lasted about an hour and now i don't want to take it again.I have tried many many painkillers over the years but nothing works.

My questions are:

How can i tell if they are CH?

Is there anything else i can take other than imigran?

thanks

Posted 11/26/2007 3:00 PM (GMT 0)
Hi Storm,

Sorry to hear that you have CH. I work on a helpline here in the UK for Clusterheadache sufferers, although I am not a Doctor I may be able to give you some basic advice. So I have a few questions for you.

Is the pain stabbing, burning or throbbing? Whereabouts on one side of you head is the pain? Do you have these attacks during the night? How long do the attacks last? Do you want to lie down with the attack or move around? Is your eye affected on the pain side and if so how?

If you can, please answer all of these questions as it will give me a better picture of what is happening!

Imigran is the first line of treament to abort CH attacks together with high flow oxygen. Imigran sadly does not suit everyone, so talk to you Doc about oxygen.

Are you in the UK? If so please email me and I will send you some more info about help you can get here in the UK.

take care

Ann
Posted 11/26/2007 3:44 PM (GMT 0)

Hi Ann

The pain  is around and in my eye,ear and down my face and on the side of my head towards the front i also very often get pain in my neck on the same side as the pain.It does not wake me up and when i get the pain it can last all day.I just want to bury my head and be on my own when i get the intense pain.My face on the side of the pain feels hot and my eyelid looks droopy.During the time i have a headache it is a burning pain but during this time i also get what i call peaks of pain that can last from about 10 minutes to a couple of hours,but there is allways pain there for hours and hours.I have had a headache for the last week not all day long and as the days go by it gets worse and worse.

I hope this helps you.I am in the Uk i will e mail you.I spoke to my GP about the imigran but he said that was all there was for me to take.

Posted 11/26/2007 6:34 PM (GMT 0)
Hi Storm,

It is true that you seem to have many of the symptoms of CH, but your attacks go on for far too long - CH attacks usually last from 45mins to 3 hrs. Having said that you sound very much like you have another condition very similar to CH - again most Docs including my GP have never heard of it - called Hemicrania Continua.

Hemicrania Continua is a unilateral (one sided headache) of mild to moderate continuous pain with 3 -5 exacerbations of more severe pain per day. The info I have given you in my email covers this condition aswell!!!! I suffer from this condition too - it is a very rare headache!!!!

Hope this helps, take care

Ann
Posted 11/26/2007 9:04 PM (GMT 0)

Hi Ann

thankyou for your e mail.

I looked up Hemicrania Continua and it sounds exactly like it!!!

Thankyou

Posted 11/26/2007 10:32 PM (GMT 0)
Hi Storm,

If your headache does turn out to be Hemicrania Continua I am pleased to tell you there is some good news as there is treatment for this called Indomethacin, which works a treat for me!!! It is not perfect but it has given me a quality of life that I have not known for nearly 30 years!

take care

Ann
Posted Yesterday 10:21 AM (GMT 0)

Hi

The hardest thing,i think,is getting the right diagnosis and understand how hard it must be for doctors as there are so many different types of headaches.

Am i correct in thinking that if Indomethacin works it is a confirmed diagnosis of Hemicrania Continua?

I am glad you have found something that works for you,i have had 15 years like this, cannot imagine what it must have been like for you to suffer for thirty years!.

thanks

Posted Yesterday 1:40 PM (GMT 0)
Hi Storm,

From the information that I have it is diagnostic that it is Hemicrania Continua if there is a complete response to the Indomethacin The correct dosage however does have a bearing on this!!

I am on 50mg three times per day but am not absolutely pf (pain free) but near enough, but I do not have what I call the big attacks at all now!!!! When I go back for my checkup my dosage may have to be altered, or this may be as good as it gets - if this is the case I can live and cope well with what I have now!!!

This condition is best diagnosed by a Headache Specialist!!

Hope this helps, take care

Ann
Posted Today 7:07 AM (GMT 0)

  Trust me if you had this kind of headache you would know the kind of pain that should never be dealt with even though some of us have miner pain from it, it can be a head banging experience non the less and Ann really know what she is talking about and thank you Ann for giving me the info on this as this is pure hell to deal with.

   Cowboy up

Posted Today 12:59 PM (GMT 0)

freezinginAK said...

   thank you Ann for giving me the info on this as this is pure hell to deal with.

   Cowboy up

My pleasure Freezing :-)   If you need anymore Info please do not hesitate to ask!

take care

Ann

Posted 12/1/2007 5:10 AM (GMT 0)
If you do have clusster h/a's may I suggest Oxygen therapy.When I asked my neuro about it, (i only have migraines, not clusster) he said that if I had clusster h/a's he would prescribe it in a second, but its not very usefull with migraines.
Just a suggestion.
I hope you get some answers and relief soon.
Best to you,
Ang
Posted 12/1/2007 8:03 AM (GMT 0)

Hi

thankyou for all your replies.My doctor has diagnosed me with CH but the only reason i don't think i have them is because they last a long time and i don't get them in the middle of the night.

Thankyou for the tip on oxygen Ang i would rather have this instead of more pills i am on so much medication already for B12,folate and ferritin def.Injections for the B12 def.My GP had offered injections for the CH but i opted for the imigran tablets,but the side effects are horrible but i will mention the oxygen to him.

I was diagnosed B12 def 2 years ago and i thought this might have been the cause of my headaches,my B12 levels are ok now, but the headaches are still happening.


Post Edited (storm) : 12/1/2007 2:14:29 AM (GMT-7)

Posted 12/1/2007 11:38 AM (GMT 0)

annuk said...

Hi Storm,
From the information that I have it is diagnostic that it is Hemicrania Continua if there is a complete response to the Indomethacin The correct dosage however does have a bearing on this!!

Ann,

I expect that you're aware of what I'm writing about, but I feel like it's important to point out. Having a complete response to indomethacin does not prove a diagnosis of Hemicrania continua. It is one of the essential criteria that must be fulfilled for someone to be diagnosed with HC, but the person must also have 1)All of the following characteristics: unilateral pain without side-shift (although there are SOME reports of HC sufferers who do experience side-shifting); daily and continuous, without pain-free periods; and moderate intensity, but with exacerbations of severe pain. As well as 2)At least one of the following autonomic features occurs during exacerbations and ipsilateral to the side of pain: conjunctival injection and/or lacrimation; nasal congestion and/or rhinorrhoea; ptosis and/or miosis. So, if you meet those listed conditions based on your personal experience, the diagnosis for HC is confirmed by a complete response to indomethacin.

So what I think Ann's trying to say is "you will respond completely to indomethacin (aka indocin) if you have HC," not "you have HC if you respond completely to Indomethacin." You may have made this clear in prior posts or your emails, but I just wanted to make sure that it was understood.

The reason for this is because Indomethacin is indicated for all of these clinical conditions--and used for others:
* ankylosing spondylitis
* rheumatoid arthritis
* arthritic gout
* osteoarthritis
* juvenile arthritis
* psoriatic arthritis
* Reiter's syndrome
* Paget's disease of bone
* Bartter syndrome
* pseudogout
* dysmenorrhea (menstrual cramps)
* pericarditis
* bursitis
* tendinitis
* nephrogenic diabetes insipidus (prostaglandin inhibits vasopressin's action in the kidney)
* fever and pain associated with malignant diseases (tumors, bony metastases, lymphogranulomatosis)
* Paroxysmal hemicrania, hemicrania continua and migraine
* renal colic (pain due to kidney stones)

I actually took Indocin for NDPH (at least 100mg QID, though I think it may have been more) with some efficacy.

Anyhow, Ann, I looked back to your earlier post in which you said that "If your headache does turn out to be Hemicrania Continua I am pleased to tell you there is some good news as there is treatment for this called Indomethacin," so I'm sure you're aware of what I'm trying to say. It's just a potentially problematic comment that could possibly lead to misinterpretation by a reader.

Storm, if it seems like you meet the other diagnostic features, as you wrote that you believe you do, then I suggest that you see a headache specialist (it doesn't sound like your GP is qualified to handle whatever it is that you're going through) or at least a neurologist and, after explaining your condition, I'm sure they'll prescribe you some Indomethacin. I'd see someone more qualified than your GP whatever the circumstances end up being. I wish you good luck and good health! And keep listening to Ann regardless of this tiny correction, she's very knowledgeable, especially concerning this subject!

Ben
Posted 12/2/2007 10:59 PM (GMT 0)
Hemicrania continua (HC) is a strictly unilateral, continuous headache of moderate intensity, with superimposed exacerbations of severe intensity that are accompanied, ipsilateral to the pain, by at least one of conjunctival injection, lacrimation, nasal congestion, rhinorrhea, ptosis, or myosis. A complete response to indomethacin is a prerequisite for diagnosis by the classification criteria of the International Headache Society (IHS).


The above paragraph is taken from a paper that my Headache Specialist has written together with other Headache Specialists in London.

take care

Ann
Posted 12/3/2007 2:43 AM (GMT 0)

korbnep said...

[a complete response to indomethacin] is one of the essential criteria that must be fulfilled for someone to be diagnosed with HC, but the person must also have unilateral pain without side-shift (although there are SOME reports of HC sufferers who do experience side-shifting); daily and continuous, without pain-free periods; and moderate intensity, but with exacerbations of severe pain. As well as at least one of the following autonomic features occurs during exacerbations and ipsilateral to the side of pain: conjunctival injection and/or lacrimation; nasal congestion and/or rhinorrhoea; ptosis and/or miosis

Annuk said...

A complete response to indomethacin is a prerequisite for diagnosis...a strictly unilateral, continuous headache of moderate intensity, with superimposed exacerbations of severe intensity that are accompanied, ipsilateral to the pain, by at least one of conjunctival injection, lacrimation, nasal congestion, rhinorrhea, ptosis, or myosis.

Ann,
We're saying the same thing, I just thought that one of your posts made it seem like a complete response to indomethacin is a sufficent condition for diagnosing HC, by itself. I was merely trying to clear up what I thought came across as confusing so that no one misinterpreted anything.

I'm sorry if it came off as if I was trying to correct you or that I didn't think you knew what you were talking about (I tried to post that I was sure you knew a lot about the subject, far more than me). You and your headache specialist are certainly correct.

Apologies,
Ben
Posted 12/3/2007 8:32 AM (GMT 0)

Hi Ann and Ben

Thankyou,I appreciate all your feedback.

My next step is to get a absolute correct diagnosis with someone who is a headache specialist not just my GP.Whether it be HC,CH or to do with my deficiencies or something else.

Yesterday was my first pain free day in 13 days yipee!!

Posted 12/3/2007 6:32 PM (GMT 0)
Congrats! That's really good to hear storm.

Ben
Posted 12/18/2007 3:49 PM (GMT 0)
Ann,

I have ahd a headache for over 3 months and was diagnosed with Transformed Migraines. One thins what I didnt quite agree was the type of pain. It seems migraine headaches are more of a throbbing pain where mine is better describe as ;

From Robbins Headache Clinic
"Hemicrania Continua occurs in men and women at all ages. These patients have moderate unilateral dull pain, with icepick pains intermittently during the day, and three-fifths of the patients have focal, intense pain lasting minutes. The pain may be increased with alcohol or physical exertion. Typical migrainous features may be present, such as sensitivity to light and accompanying nausea. There are many patients who do not fulfill all of these criteria, but who have unilateral dull or throbbing pain on a daily basis, with migraine features. They usually also experience intermittent icepick-type jabbing pains. Autonomic features may accompany flare-ups. "

I found about HC from researching on the internet. I emailed my doctor with what I found and he prescribed the Indomethacin. Within 2 days the intensity of the constant dull headache has diminished and I have had no "icepick-type jabbing pains"

My question is what is meant by "A complete response to indomethacin" what is meant by Complete? Does this mean the headache is completely gone? Mine is diminished but maybe adjust the dosage will help. Maybe you could ask your doctor what he meant when he wrote "A complete response to indomethacin"

Thanks

God Bless and Merry Christmas

Joel
Posted 12/20/2007 9:54 AM (GMT 0)
Hi Joel,

Welcome to Healing Well. I am pleased that Indomethacin has helped you. Please check your emails.

All the best for Christmas and the New Year

take care

Ann
Posted 4/21/2012 12:03 AM (GMT 0)
Hi, I'm new to threads and forums and don't normally post things but I've found myself in a frustrating position and don't quite know what to do so I'm looking for advice.

Up until new years eve 2011 I was in perfect health other than suffering from PCOS. I have only ever had a few tension headaches in my life and a few worrying episodes in 2009 where I would go to say something and say the wrong words - turned out to be stress related as did the tension headaches.

I only take Dianette to treat the PCOS. My husband and I are planning to try for a baby at the start of 2012.

So 31/12/11 I was at home with my husband and daughter, boring really as I dot smoke or drink. I started to vomit and couldn't keep anything down all night. Went to work the next day and at 10am got struck by the most horrendous pain in the right side of my head. It got worse as the day went on and within a few hours I was unable to move and had a stiff neck and photophobia. It was mostly right sided and horrid so I went home and took ibuprofen and slept for an hour. When I woke the pain was worse. It was all behind my eyes and felt like someone had put a balloon pump in my ear and was inflating my brain.

Long story short I ended up in hospital, 18 hours on a trolley in a corridor and moved from one ward to another. Nothing they gave me helped the pain or severe nausea. After 4 days and appalling care I had an LP which had an opening pressure of 37, CT scan was clear. Doctor said it was a post LP headache and wouldn't listen when I said I was admitted with a headache. I was discharged whilst. Omitting with a diagnosis of migraine and given tramadol to take and not advised of follow up.

After trips to the GP and a 6 week wait to see a neurologist it was agreed something is wrong. I had another LP with opening pressure of 32. MRI and MRV both clear.

I then had to wait for more tests. A couple of weeks ago I was admitted to hospital to come off tramadol as I had been on it 3 months and it can causes headaches as well as other nasty problems and dependence!!! No one told me about this and my GP just put it on repeat prescription.

None the less I have suffered a non stop headache since the 1st January 2012. Mostly right sided constant pain at a 7/8 out of 10. It flares up to 10 out of 10 a few times in the day and gets unbearable when I move, cough or god forbid sneeze. It's better when I lay down and worse when I sit up. I'm irritable and want a dark cave to crawl into. In addition to this the right side of my nose runs, i hear whoosing sounds and I have such horrendous power back pain that I can no longer walk unaided.

After a week in hospital my spinal MRI, brain MRI And MRV are normal. During the week my headaches changes to just a dull pain in my head that was worse in the morning and got better through the day. My next LP was 17 which is normal so they ruled Idipathic Intercranial Hypertension out. I have had an EMG as my left side is weaker.

I have been released from hospital feeling ok just this persistant right sided dull headache. I have been given Indometacin to take three times a day and have to keep a pain diary.

I got in the car and was driven home. I sat on my sofa and within 10 minutes that horrible stabbing debilitating headache was back. 

It's been four days some I came home and I still have this headache. It's mostly right sided with the flare ups being global. It eases when I lay down and is excruciating when I cough and sneeze and move. I also feel quite sick.

I have been taking the Indometacin as this is to see if I have HC. How long should it take to work? Also with me and my husband trying for a baby we are worried. I have stayed on the pill until diagnosis but the leaflet with my tablets say it can cause fertility problems and shouldn't be taken when pregnant.

I don't know what's wrong with me! Ive been sick with this headache for 4 months and it feels like it will never go away. As dramatic as it sounds I feel like it is crippling my life - its already cost me a promotion!!! I'm also worried about the effects on my tummy. I take Omeprazole, drink a glass of milk every day and make sure I take my pills with food but this is potent medication.

I am now suspecting my home might be making me I'll. We've had damp and mould for a couple of years which the land lord said to clean off and air out so we do and it seemed to go. A pipe burst in November and the black mold in the dining room grew loads. I clean it off and it comes back. Environmental health are coming to look at it next week.

My husband and daughter both have persistant coughs so I can't help but wonder if my headaches are due to the black mold or if my brain is just broken.

At the moment I'm just scared for me and my family. I'm the bread winner and all I wanted this year is to get promoted, move house and have a baby.

If there is any insight you can offer I will gladly listen.

Thank you

Jax.
Posted 4/23/2012 7:17 AM (GMT 0)
Jax,

I am so sorry to hear what you have been going through. I am quite sure the damp situation in your flat has had an effect on your health, it will have made you vomit and the runs and will affect your chest too hence the coughing you need to get out of there asap!!!!

The headaches could have come out of no-where and be unconnected but you need to be sure. I would strongly advise you to find yourself a Neurologist who is a Headache Specialist even if you have to travel some distance, it will be well worth it. However, someone is obviously knowledgeable as they have tried you on Indomethacin for HC (which I have). The Indomethacin usually works very quickly depending on what dose you are taking???

take care

Ann
Posted 4/23/2012 7:32 AM (GMT 0)
Ann,

Thank you for the reply. I have two neurologists and a headache specialist and they have said that my symptoms are conflicting so they are unsure what
Is wrong.

I started taking indometacin last Tuesday at 25mg 3 times a day. 4 days later they doubled the doses. I'm now on 50mg 3 times a day. The headaches are better and typically stay right sided with the Migrainous aspects gone. It's now a tolerable 5/10 in pain. I thought indOmetacin got rid of them. It's been a week and I still have the head pain so does that mean I don't have HC?

I have to wait another week before I see my consultant. I don't know what else they can do to help. If they don't sort it out I will never be allowed back to normal duties at work. :(
Posted 4/23/2012 10:07 AM (GMT 0)
Jax,

It took a dose of 75mg three times a day to knock my HC out so keep trying, there's time yet. Hang in there they will get to the bottom of it but just not in the time frame you would like.

If you want somone to talk to email me, take care

Ann
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