Aa
Hemicrania Continua (Right Side Hurts Always)
I have just been diagnosed by my Neurologist with a type of headache called "Hemicrania Continua". The right side of my head hurts all of the time. It is a pressure pain and it is constant from the time I wake up to the time that I go to bed. I have been on short term disability from my job since March and I am desperate for answers from someone who has battled this same problem to get back on my feet and get my life back. I am currently taking Topamax 25mg (2x daily) and Indomethacin up to 3 times daily. It helped for about a week, but my headaches came back 3 days ago. I am scheduled to go back and see my Neurologist in about a week. I am sure he will up my medication which is fine as long as it gets rid of the headaches, because they are quite debilitating. What I wonder is if the side effects that I suffer from with the meds - loopiness, out-of-it, can't hold an intelligent conversation kind of things will go away. Can anyone help me???
I have also been diagnosed with hemicrania continua. I have been very successful with indomethacin. I take 50 mg, 3 times per day. If I miss a pill or run out, the headaches return immediately. My doctor also put my on topomax today to see if that, along with melatonin can decrease my dosage of indomethacin. I am very concerned about the side effects of topomax. I am a business analyst and need to be able to have an intelligent conversation. Has anyone here had good results with Topomax? My Dr. is a neurologist, migraine specialist and sleep specialist which i have found to be the perfect combination to help me deal with this. I was at a point where I was becoming very depressed and hopeless. I even had a root canal that I didn't need! He has suggested that people show some signs of remission when their sleep patterns are healthy and they wake up refreshed and rested.
Indomethacin is the golden standard of treatment for this. I don't think topomax has any effect on it, it is a migraine drug. Naproxen can also work, it is also a NSAID like indomethacin but a bit milder.
It is not completely easy to distinguish between hemicrania continua and chronic migraine in some cases, so you need to be humble and prepared to reevaluate the diagnosis if the treatment does not give you complete relief.
Indomethacin should take away the headache completely.
It is not completely easy to distinguish between hemicrania continua and chronic migraine in some cases, so you need to be humble and prepared to reevaluate the diagnosis if the treatment does not give you complete relief.
Indomethacin should take away the headache completely.
OMG this may sound brutal, but it is somehow gratifying to hear that there are people out there living with these headaches like I am. Only you people can understand how hard it is to cope with everyday tasks. I try to explain to family and friends what I have to live with on a daily basis. SO many people just don't understand the amount of pain and just trying to get through the day at times just seems impossible. I have had these headaches for 5 yrs. now. Was finally diagnosed last yr. with Hemicrania Continua. For years I really felt like a guinea pig. For me, along with the pain, it also affects my concentration, ability to focus and at times my speech is slurred noticeably. A normal way of living I feel is in the past.
How is the occipital stimulator working for you. I've been through h--- and back the past five years without a diagnosis and/or meds that seem to help except for narcotics, and those will cause rebounds i know, but...what am I to do when I can't find someone who is willing to help me work to find a reason? I've done the round of topamax, verapamil, Lyrica, botox, chiropractic, torrodal IM injections and pills, accupuncture, and nuerotin. I see my pain mgmnt drwho is helping me balance both sides of the two evils (no narcotics and pain...or...narcotics giving me some sort of life functions yet possibily rebound headaches. I've also started having seizures which has complicated things, but "they" cannot find any reason, except that I'm "fine". If anyone out there has had success somewhere I'd LOVE to know. I've been to Wake Forest Baptist Hospital, Emory Hospital, and even spent an ENTIRE month at the Cleveland Clinic. (We live in Asheville.) My husband and I are both teachers, but I've been on long term disability for 5 years now. I'm "homebound" b/c of the seizures (we live in the woods WAY outside of any type of public transportation), and this is getting SO hard to keep dealing with day to day.
I'd be VERY appreciative if there's anything that anyone could suggest.
Thank you - Eyrin
I'd be VERY appreciative if there's anything that anyone could suggest.
Thank you - Eyrin
I too have hemicrania continua - since Dec 2007. I now have an occipital stimulator which is assisting with pain control, but still have some pain - daily bouts of swift extremely pain jolts of pain that come in bunches and disappear.
I am wondering how the oxygen is working for your headaches. I am always interested in non-drug solutions if I can find them!
I am wondering how the oxygen is working for your headaches. I am always interested in non-drug solutions if I can find them!
Hi
I have just found that I may have Hemicrania Continua also.
I have suffered 9 months of constant eye pain - no break. Then I saw a neurologist around 5 weeks ago with the possible cause of HC.
At this point my pain shifted to the left side, moving from my jaw, neck, teeth and eye. Pain is always worse in the right side. I also suffer horendous migraine type pain and find that as the pain differs day to day, it is impossible to cope.
However, I strongly suggest you contact an organisation called OUCH. They have a website called www.ouchuk.org
They have been a godsend!!!
Don't be frightened to leave them a message. The organisation is new and they are working on letting all practitioners know about our condition and those that are similar, like Chronic Paroxysmal Hemicrania and Cluster Headaches. They have a brilliant forum and have helped me immensley, particularly with getting the right treatment.
I have now discovered that as these conditions are so rare, you may be up against a brick wall with your GP and possibly your neurologist, who isn't a specialist in this field.
I am now with their help about to start a new treatment called Verapamil. My GP has also organised oxygen to be sent to my home. This I beleive can abort around 90% of the attacks. The Verapamil is their to prevent further attacks. I have also been given Immigran injections from my GP which are also a good way to prevent particularly if you are not at home and may have started work.
Like you I am still not working, but by following their advice and hopefully starting the Oxygen treatment I will have a far happier outlook.
The other main thing to mention is, that you MUST see a specialist in Headaches. I beleive the marjority of these neurologists, are based at Queens Square. However, OUCH have found one that operates at Hull Infirmary not far from where I live so my GP has sent a referral to them. Because patients now have the ability to choose where they want to be treated and by whom, under the book and choose scheme you can be referred to someone who specialises in headaches. Hull Infirmary has a headache clinic so I am just waiting for my referral appintment to come through.
I have also had many diseases ruled out before reaching where I am now. As I initially went through eye pain my eye consultant ruled out any eye related diseases, and I underwent an MRI. Hence the conclusion that I have some form of Headache possibly Hemicrania Continua.
I really must urge you again, to contact OUCH. They will soon make you feel like you are not alone. The other part of dealing with this condition is the lack of knowledge and understanding by the medical people, including your GP. They are not trained in this and you have to find a GP which understands you and is willing to learn about your condition.
Happy to be of help and hope you find help with OUCH.
Maria x
I have just found that I may have Hemicrania Continua also.
I have suffered 9 months of constant eye pain - no break. Then I saw a neurologist around 5 weeks ago with the possible cause of HC.
At this point my pain shifted to the left side, moving from my jaw, neck, teeth and eye. Pain is always worse in the right side. I also suffer horendous migraine type pain and find that as the pain differs day to day, it is impossible to cope.
However, I strongly suggest you contact an organisation called OUCH. They have a website called www.ouchuk.org
They have been a godsend!!!
Don't be frightened to leave them a message. The organisation is new and they are working on letting all practitioners know about our condition and those that are similar, like Chronic Paroxysmal Hemicrania and Cluster Headaches. They have a brilliant forum and have helped me immensley, particularly with getting the right treatment.
I have now discovered that as these conditions are so rare, you may be up against a brick wall with your GP and possibly your neurologist, who isn't a specialist in this field.
I am now with their help about to start a new treatment called Verapamil. My GP has also organised oxygen to be sent to my home. This I beleive can abort around 90% of the attacks. The Verapamil is their to prevent further attacks. I have also been given Immigran injections from my GP which are also a good way to prevent particularly if you are not at home and may have started work.
Like you I am still not working, but by following their advice and hopefully starting the Oxygen treatment I will have a far happier outlook.
The other main thing to mention is, that you MUST see a specialist in Headaches. I beleive the marjority of these neurologists, are based at Queens Square. However, OUCH have found one that operates at Hull Infirmary not far from where I live so my GP has sent a referral to them. Because patients now have the ability to choose where they want to be treated and by whom, under the book and choose scheme you can be referred to someone who specialises in headaches. Hull Infirmary has a headache clinic so I am just waiting for my referral appintment to come through.
I have also had many diseases ruled out before reaching where I am now. As I initially went through eye pain my eye consultant ruled out any eye related diseases, and I underwent an MRI. Hence the conclusion that I have some form of Headache possibly Hemicrania Continua.
I really must urge you again, to contact OUCH. They will soon make you feel like you are not alone. The other part of dealing with this condition is the lack of knowledge and understanding by the medical people, including your GP. They are not trained in this and you have to find a GP which understands you and is willing to learn about your condition.
Happy to be of help and hope you find help with OUCH.
Maria x
If time and money permits, I would suggest you take opinion from other specialists in the field as well.
Its because headache can be a symptom of many "things", and the neurologist is usually not enchanted by anything outside the skull, he feels happy by finding the brain okay.
Since the headache is always present (how long you didn't mention; may be it is already gone?) and is to one side, you may visit the dentist to see if any of the teeth on that side is causing the problem, an ENT to rule out causes in the ear, nose & sinuses and throat, an orthopaedic surgeon to rule out a cervicogenic (caused by neck vertebrae etc) headache....
But many are not aware of cervicogenic headache (is there any neck stiffness or change in the pain or its severity if you move the head to sides or tilt it up or down?), leave alone check for the same. May be the neuro has ruled it out.
This is because it is not unusual to find a cause for the headache, initially thought to be primary (without cause).
It is a sad reality that the medical community haven't as yet exhausted the list of causes of headache. If no cause is found, it is given a label of primary headache, and treated as such.
Wish you the very best,
Tomsant
Its because headache can be a symptom of many "things", and the neurologist is usually not enchanted by anything outside the skull, he feels happy by finding the brain okay.
Since the headache is always present (how long you didn't mention; may be it is already gone?) and is to one side, you may visit the dentist to see if any of the teeth on that side is causing the problem, an ENT to rule out causes in the ear, nose & sinuses and throat, an orthopaedic surgeon to rule out a cervicogenic (caused by neck vertebrae etc) headache....
But many are not aware of cervicogenic headache (is there any neck stiffness or change in the pain or its severity if you move the head to sides or tilt it up or down?), leave alone check for the same. May be the neuro has ruled it out.
This is because it is not unusual to find a cause for the headache, initially thought to be primary (without cause).
It is a sad reality that the medical community haven't as yet exhausted the list of causes of headache. If no cause is found, it is given a label of primary headache, and treated as such.
Wish you the very best,
Tomsant
Hi,
I have this disorder and I have tried everything you can imagine in 4 years (Verapamil, Topamax, Lyrica, Acupuncture, chiropractor, therapeutic massage, etc). Now, I live a normal life, going to work daily. My cocktail includes: Indomethacin ER 75mg twice daily, Gabapentin 300mg twice daily and Trazodone 100mg at bedtime to make me sleep good. The pain still comes rarely but I take a Tylenol when starts and that resolves it. Neither one of these medications work alone but the one that helps mostly is Indomethacin.
I have this disorder and I have tried everything you can imagine in 4 years (Verapamil, Topamax, Lyrica, Acupuncture, chiropractor, therapeutic massage, etc). Now, I live a normal life, going to work daily. My cocktail includes: Indomethacin ER 75mg twice daily, Gabapentin 300mg twice daily and Trazodone 100mg at bedtime to make me sleep good. The pain still comes rarely but I take a Tylenol when starts and that resolves it. Neither one of these medications work alone but the one that helps mostly is Indomethacin.
Hi. I feel your pain and have been diagnosed with chronic paroxysmal hemicrania continua. I was on Topamax at one time too and I couldn't hold an intelligent conversation either. Most of the time I was unable to think of words for simple things such as door or pencil. The neurologist put me on Verapamil and Indocin instead. I have been suffering bouts of this for nearly 2 years and am off of work for the 4th time now. I am also taking oral steroids and had a steroid shot to try to break the pain cycle. I went to see a chiropractor today to see what he can do for me. I am trying to search all of my avenues since long term treatment so far hasn't been working. I will let you know how it goes.
Hello,
I have a "cousin" headache of yours called Chronic Paroxysmal Hemicrania. It takes awhile to increase the indomethacin/indocin to the level where it works. Do not be afraid to ask about this, and ask your Neuro how to self regulate this! Also, be sure to get BOTH the sustained release (SR) as well as the regular release. I also found that the generic did not seem to work as well as the brand name! UGH!
Also, ask if oxygen would be helpful? I find that switching from ice packs to hot water bottles brings the pain down as well. Be sure to take your B vitamins, and especially magnesium. I find that Melatonin is also quite helpful at night.
Take this page to your Neuro and discuss it with him. You have a VERY RARE condition, and not too many doctors ever encounter it. Read as much as you can on-line. Blessings!
I have a "cousin" headache of yours called Chronic Paroxysmal Hemicrania. It takes awhile to increase the indomethacin/indocin to the level where it works. Do not be afraid to ask about this, and ask your Neuro how to self regulate this! Also, be sure to get BOTH the sustained release (SR) as well as the regular release. I also found that the generic did not seem to work as well as the brand name! UGH!
Also, ask if oxygen would be helpful? I find that switching from ice packs to hot water bottles brings the pain down as well. Be sure to take your B vitamins, and especially magnesium. I find that Melatonin is also quite helpful at night.
Take this page to your Neuro and discuss it with him. You have a VERY RARE condition, and not too many doctors ever encounter it. Read as much as you can on-line. Blessings!
Thank you so much!!!
I am anxious to get back to work and resume a normal lifestyle!!! My husband is deployed and due to come home for a visit in about 3 weeks and I hate the thoughts of him seeing me like this. The other thing breaking my heart is my 8 year old daughter has watched me lay on the couch in pain all summer. Although, she has tried to be understanding about it, she is more than frustrated. I am ready to be Super Mommy again. Your words are encouraging and that is what I am pushing for!!!
I truly appreciate your help, Dr!!!
I am anxious to get back to work and resume a normal lifestyle!!! My husband is deployed and due to come home for a visit in about 3 weeks and I hate the thoughts of him seeing me like this. The other thing breaking my heart is my 8 year old daughter has watched me lay on the couch in pain all summer. Although, she has tried to be understanding about it, she is more than frustrated. I am ready to be Super Mommy again. Your words are encouraging and that is what I am pushing for!!!
I truly appreciate your help, Dr!!!
Hi,
It has been observed that with daily medication and proper medical attention patients can obtain a near complete relief from their symptoms.
The prognosis is especially good in patients who respond well to indomethacin.
Hope this helps!
It has been observed that with daily medication and proper medical attention patients can obtain a near complete relief from their symptoms.
The prognosis is especially good in patients who respond well to indomethacin.
Hope this helps!
Thank you for the information!!! I will check out the link that you have posted and see what information I can find out.
You said complete remission is not possible. I am curious what kind of quality of life other people with the same condition have. Are they able to work, etc. Right now I am lucky to make it through a full day at home, let alone make it back to my job. Ironically I am a pharmaceutical rep. I have to have my faculties about me all day not only to drive safely in the company car, but to be able to have intelligent conversations with the physicians that I come in contact with on a daily basis and depend on me for the information that I bring them for their patients. Since the beginning of these headaches, it has never occured to me that I woudn't go back to work, but now, to be honest I am more than a little nervous. Is there hope for me???
Thank you so much for all of your help!!!!!
You said complete remission is not possible. I am curious what kind of quality of life other people with the same condition have. Are they able to work, etc. Right now I am lucky to make it through a full day at home, let alone make it back to my job. Ironically I am a pharmaceutical rep. I have to have my faculties about me all day not only to drive safely in the company car, but to be able to have intelligent conversations with the physicians that I come in contact with on a daily basis and depend on me for the information that I bring them for their patients. Since the beginning of these headaches, it has never occured to me that I woudn't go back to work, but now, to be honest I am more than a little nervous. Is there hope for me???
Thank you so much for all of your help!!!!!
Hi,
How are you?
Hemicrania continua is a primary headache disorder which is not caused by any thing. It is characterized by one sided headache and responds to indomethacin.
Usually indomethacin helps to control it to a large extent although complete remission is not possible.
GIT side effects are a common problem with indomethacin, generally antacids are given to counteract this side effect.
NINDS is conducting a lot of research for headache disorders. Please check the link below for more details.
http://www.ninds.nih.gov/disorders/hemicrania_continua/hemicrania_continua.htm
How are you?
Hemicrania continua is a primary headache disorder which is not caused by any thing. It is characterized by one sided headache and responds to indomethacin.
Usually indomethacin helps to control it to a large extent although complete remission is not possible.
GIT side effects are a common problem with indomethacin, generally antacids are given to counteract this side effect.
NINDS is conducting a lot of research for headache disorders. Please check the link below for more details.
http://www.ninds.nih.gov/disorders/hemicrania_continua/hemicrania_continua.htm
Have an Answer?
You are reading content posted in the Migraines and Headaches Community
Top Neurology Answerers
Allentown, PA
Queen Creek, AZ
Queensland, Australia
Trinity , TX
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
