Hemi-crania continua

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yellow2
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Date Joined Jan 2010
Total Posts : 11
   Posted 1/14/2010 9:57 PM (GMT -6)   
Hi,  I am new to the forum.  My husband suffers from hemi-crania continua.  It is a unilateral migraine. he has it 24/7.  In his case, at its worst, it travels down the entire left side of his bady.  It is quite rare and eludes treatment.   I would love to hear from someone else who has it and what has worked for them.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 1/16/2010 8:14 AM (GMT -6)   
Hi Yellow2,

I have Hemicrania Continua and Chronic Migraine. I have had the HC for 21 years and the migraine for 30+ years!! I was not diagnosed with HC until 2007 and then received the right treatment as before my local Neuro said it was migraine. It took a referral to a Headache Specialist to confirm what I was going through as this is difficult to diagnose!

You are right HC is extremely difficult to treat and I have gone through all the available medications and am now no longer able to take any more preventative medication due to side effects for me personally. However, the first line of treatment for HC is usually Indomethacin (Indocin). I took this for some time with absolutely brilliant effect on the headache, but sadly had to stop because of side effects. Now some people are able to take this med indefinitely, please talk to your Doc about it.

Has your husband seen a Neurologist who is a Headache Specialist? Who diagnosed him?

For bad exacerbations of pain I take Imitrex injections, although they do not take the pain away completely they do bring it down to a copable level! I also have High flow oxygen at 15 litres per minute with a non-rebreather mask which I use for twenty minute to half an hour for each exacerbation.

The advantage of oxygen is that you can have it as many times a day as needed, whereas you can only have an Imitrex injection twice in any 24 hours!! Oxygen has the same effect as the Imitrex but affects only the brain and not the rest of the body! Oxygen is usually used for Clusterheadache but personally I have found it useful for me, together with the injections means the difference to me between coping and not!!! Neither of them are perfect!! I also have every few months a GONB (Greater Occiptal Nerve Block) which I have found very helpful!! This is an injection of local anaesthetic and steroid into the area around the occipital nerve at the back of the head - no worse than a sharp scratch!!

I am currently waiting for approval for an operation called ONSI (Occipital Nerve Stimulator Implant). This would mean implanting a small device like a pace maker and having it wired into the Occipital Nerve at the back of my head. This gives small pulse of electricity to block the pain pathway and has found to be helpful to HC sufferers!!

I hope this helps, please do not be afraid to ask me any questions you may have.

Take care

Ann
Co-Moderator of the Migraine/Headache Forum


yellow2
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Date Joined Jan 2010
Total Posts : 11
   Posted 1/16/2010 9:47 PM (GMT -6)   
Hi, Ann, thanks for your reply.

Yes, he has a great Nuero-pain specialist here. Oxygen has not worked for him, nor have the nerve blocks. His current drug cocktail is lyrica and indocin. He uses ergotomene to conquor the bad ones (at least a few times a week) as welll as highly caffinated sodas.

I have heard good things from the one person I know of that recieved the implant. I suspect eventually we will need to go that route, but get nervous about the septis (sp?). DO you know what the statistics are for that? I would like a solid percentage.

I have heard that the best doc for it in the country is in Mayo in AZ. Have you been there? WHere will you go for the implant?

Annuk
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Date Joined Jan 2006
Total Posts : 1308
   Posted 1/17/2010 3:42 PM (GMT -6)   
I am in the UK, and will have my operation at the National Hospital for Neurology and Neurosurgery in London! Unfortunately I do not know any percentages for sepsis with this operation. I know here an antibiotic is given during surgery and afterwards to prevent anything nasty happening!

Out of the six people I know who have had this, just one of them has had a mild infection in the wound site, but this has not amounted to much!

Lyrica was good for my heads but I developed too many unwanted side effects to continue with it, and Indocin the same! I wish your husband well, please keep me posted as to how he is getting on.

take care

Ann
Co-Moderator of the Migraine/Headache Forum


yellow2
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Date Joined Jan 2010
Total Posts : 11
   Posted 1/17/2010 5:00 PM (GMT -6)   
Yes, I will keep you posted, and I hope you will do the same.  The one person I know of who has had the implant really loves it.  Of all the people I know (5) with this diagnosis, she is the only one who has gotten any real relief.  I wish you well.
 
Anne

ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 3/16/2010 4:58 PM (GMT -6)   
How is everyone with hemicrania continua?  I just stumbled upon this old post.  I cannot take indomethacin any longer because of severe GI issues and I am desperate for relief!!!  There was a study on verapamil and my neuro is trying me on that but so far it is not helping. cry

yellow2
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 3/16/2010 5:38 PM (GMT -6)   
Sorry you are having a tough time of it.  Have you tried Lyrica.  So far, it has been by far the most effective medication my husband has tried (three months).   That being said, the effectiveness is beginning to wear thin, and we, too, are looking for the next solution

ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 3/17/2010 11:57 AM (GMT -6)   
Sorry, yellow2.  It is so frustrating when things stop working and you are right back to the 24/7 pain again.  It is a lot to bear sometimes for the person going through it and their loved ones. 

yellow2
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 3/17/2010 1:54 PM (GMT -6)   
Good news....after three days of pain, it has subsided.  We are suspicious that a stressful event triggered the relapse, but today he is doing fine.  As you know...every day headache free is a good day!
 
Thanks for your empathy.

Jean1024
New Member


Date Joined May 2010
Total Posts : 1
   Posted 5/12/2010 5:44 PM (GMT -6)   
Hi- I'm glad to have found this bulletin board... lots of useful information. Thank you all for sharing! I have a question- for those of you who have used indocin, how long from when you first started the medication did it take to reduce/eliminate your headache? Was it immediately? Days? Weeks? Thank you for any help you can offer.

yellow2
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 5/12/2010 5:53 PM (GMT -6)   
For the first three days on indocin, my husband's headache "rearranged" itself.  This was difficult for him.  After three days, his pain was greatly reduced.  After awhile, the success was diminished, but Lyrica added in brought the relief back.

ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 5/13/2010 5:31 PM (GMT -6)   
Once I was on a high enough dose (extended release 3 times daily) I had relief within days, but it began to fade after a few months, then I had a terrible Crohn's disease flare and ended up in the hospital.  I had not previously had this disease and the GI dr says the Indocin triggered it.  Now I am back to horrible pain daily and can never take any anti-inflammatory drugs again. cry   Good luck.  More research really needs to be done into finding another treatment for this terrible disorder.
 
 
Diagnosed w/ Crohn's 2010
Diagnosed w/Hemicrania Continua (variation of migraine disorder)fall 2009
Current meds: Pentasa, prednisone taper, omeprazole (Prilosec), zonisamide (Zonegran)
 


cgray10
New Member


Date Joined May 2010
Total Posts : 5
   Posted 5/13/2010 9:21 PM (GMT -6)   
My 10 year old daughter was just diagnosed with HC. I am curious if any of you have children that have been diagnosed with this. I have so many questions and have not had much luck finding any information on this. Thanks for any help :-)

yellow2
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 5/14/2010 6:57 AM (GMT -6)   
I believe the average age of onset is 33, and it often takes several years before a person gets diagnosed. I know of only one other person diagnosed at a young age. SHe started another forum specifically for HC.

I would consider taking your daughter to Mayo clinic in Scottsdale, AZ. They have the most advanced treatment for HC (in the US).

Clairbcn
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 7/1/2011 5:44 PM (GMT -6)   
My husband has suffered with HC since the age of 3yrs his mum and dad took him too hundreds of specialists in which he was never diagnosed. My husband headaches were so severe he used to collapse and when taken to a&e I was always asked at the hospital if he was diabetic or had been drinking or using drugs.

In 2007 we were watching a programme called "the brain hospital" where a lady who was having a operation (onsi) had all the same symptoms as my husband.

I managed to obtain the phone number for the consultant on the programme and we called, we were given appointment and after taking 75 different drugs a weeks stay in hospital oxygen at home and after 33 years he was finally diagnosed with severe HC.

In January 2010 my husband was taken into surgery to have the ONSI. It's been 16 months since having the operation and things seem to be going well But due to the fact he has to have it switched on 24 hours a day, instead of it battery lasting for 5 years he will need it replaced in 3 years, what I will say is that his quality of life has completely changed not just for him but the whole family and no more trips to a&e.

TriTracy
New Member


Date Joined Feb 2013
Total Posts : 2
   Posted 2/24/2013 12:47 AM (GMT -6)   
Hello, new to the the migraine world. On Feb. 19, 2013, I was diagnosed with Hemicrania Continua and it effects the nerves on my heart and lungs. I have it on my right side but can move to the left temple only just briefly. But, always the right eye pressure and jaw is the starting point and then spreads to the shoulder, neck and then "BAM" it stabs me in the right temple. This will cause fainting, nauseousness, tremors, twitching of muscles in the neck and sometimes the body and right leg.

Here are some of the information I gave my neurologist in Scottsdale AZ. By the way which is the BEST NINDS in the US. St. Joseph Hospital of Neurology and Barrow Institute.

Soctoma right eye – intermittent
Exercise induced right eye blurred vision with blood vessels in right eye inflamed and red. Running nose on right side and feels like nasal drip from right eye. After exercise goes away in two to three hours. Did a home Pinhole test with right eye when blurred vision occurred and eye still blurry.
Auditory distortions. Music on radio sounds slurred. Like putting your hand on a record player to slow it down.
Tinnitus. A tunnel fading away.
Weakness on right side (intermittent) from top of head to chest. Neck feels stiff and tight. Arms hands intermittently tingle and feel numb. Not full numbness. All on right side.
Excessive night sweats that are trenching (intermittent). Wakes me up. Intermittent.
2-17.2013 - another scary episode with heart. Heart rhythm had two double arrhythmia intermittent. Left side weakness and tingling. Light headed and overwhelmed with fatigue. Breathing labored. Lasted about an hour or two.

Trigeminal Neuralgia-(Feels like this)
Debilitating Intermittent stabbing pain in right side of head. Left side recently 2-16-13 episode (5-sec.episode) When it occurs I am off balance, nauseous, weak, faint. Extreme episode 02-3-2013 on Sunday evening at work. Lasted three hours. Wanted to go to ER.
Intermittent tremors in neck, shoulder, face on right side. Sometimes left side.
Intermittent extreme cold in right hand and arm.
Chills

Basilar Artery Migraines-(Feels like this)
Tight tendon and muscles in neck or range of motion restricted on right side.
Feels like back of neck and lymph nodes swell.
Pain and tender back of neck
Can be debilitating. Due to the intensity of the discomfort I avoid daily activities because fear an impending attack. Dizziness, vertigo, problems with balance, changes in hearing and speech, and mild numbness and tingling.
Excess fatigue

I hope some of this helps because I know what this scary feelings feel like. It took me a year to get the right diagnoses. Some meds that might help is a herbal supplement called Boswellia. Soon has I feel it coming on I take a Boswellia and it makes it more manageable. Also, the doctor prescribed Indomethacin that insistently takes the pain away. But, you have to catch it before it starts. Indosin (for short) can have bad side effects so the doctor also prescribed Omeprazole for stomach discomfort (Equivalent for: Prilosec). I chose to take the Boswellia first because I am a triathlete (trained to ignore pain) and don't want to stress my body out more than I need too. Also, I would like to add that taking Melatonin at night will help you sleep better. I have done extensive research and with the help of a cardiologist, pulmonary, and neurologists I just might get this illness under control.

God Bless and best wishes.
TriTracy

Sasilyah
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/7/2013 8:21 PM (GMT -6)   
Hi I have just joined this forum. I have had HC for 6.5 yrs and it is now getting me to the point I cant deal with it much longer. If anyone has any information on new treatments/drugs please please let me know.

Beachbumgirl
Regular Member


Date Joined Jan 2016
Total Posts : 61
   Posted 1/25/2018 10:36 AM (GMT -6)   
I see many people on here taking Indocin by mouth . Did you know there are rectal suppositories available? When you take them that way you avoid the stomach side effects. I tried them and Indocin did not work for me but may work for someone else.
I also have HC. I see a headache specialist and we have tried EVERYTHING,
I,m at the point where i’ve had a persistent migraine for 14 months .
Crazy! Yes, I’m not working and I may lose my job. I wonder, will I have to live like this.
I’ve decided to seek a second opinion at Michigan Head Pain and Neurological Institute.
Definitely not close to my home, by my specialist has sent a few patients to them.
It concerns me a little ( ok a lot) that my specialist is so thorough, i’m Not liking the options.

I must try! I read all of your posts of those that live with migraine. You are Brave!
I know others deal with so much worse than 9 out of 10 Head Pain everyday. God bless
Them! I hope this little bit of info helps someone.

Seagull123
New Member


Date Joined Jan 2018
Total Posts : 4
   Posted 1/26/2018 9:30 AM (GMT -6)   
I had first migraine at 16 I 70 now and get them about every 2to 3 weeks.i have tried everything over the years nothing helped but mri scan did show something migraine and temporal lobe legions .
I do have other health issues but migraine is the thing that cripples my life.It case of dark room compress and puke bucket.I unable make any commitments to anything incase get migraine and that when you get tangled ask myself am I bringing them on because I worried may get one.
you have to suffer full belt migraine to know one and I not wish that on anyone but just occasionally you get people say you only got head ache take few aspirin be ok oh how I wish.
I was once given kava kava and worked within mins.It something I was given in the States you can get it in America and Canada unfortunatly in my short sighted country That and melatonin banned.
I also found for short time melatonin did help but that may been coincidence.I just been told wild lettuces are helpful so I got some seeds from Germany instructions in German and bad.going give it ago.
I also been told place called indigo herbs it company in America and do free shipping going to order from them plus from amazon I bought emoxypine it has anti inflammatory and cognitive things so far not helped but told it takes time.
I hope that helps those few tips which got try myself

Seagull123
New Member


Date Joined Jan 2018
Total Posts : 4
   Posted 1/26/2018 9:38 AM (GMT -6)   
Just add I been given morphine tramadol codine and it do nothing.i have found if I eat load of cheap sweets and tonic water it will abort one but it got be timed to precion otherwise wont work.

Beachbumgirl
Regular Member


Date Joined Jan 2016
Total Posts : 61
   Posted 3/11/2018 12:38 PM (GMT -6)   
Hi Seagull123:
Sorry you are miserable. I am in the USA. I have had migraines on and off for 20 plus years. Worsening over the last 1.5 years. I have done Botox x 3 yrs. in the last 9 months or so , I was diagnosed with Hemicrania
Continua. I have tried multiple med combinations to stop the increasing head pain. As of December 2017, I have had a daily headache of 4-5 out of 10. The specialists around here say: melatonin works on the same
Way as Indocin. I take melatonin 30mg by mouth every night. Indocin did not help me. Did you know it comes in a rectal form? It is Indocin 50 mg daily I tried rectally. The by mouth one did a job on my stomach.
I now am seeking my third opinion on my headaches. about an hour from my home, there is a pain center and headache institute. There is a headache specialist there along with anesthesiologists. In another week, I’m try injections near my left eye to take away the pain. That’s where I always get the pain including the back of my head and neck. I also have a neuroma on the left side of my neck . Not sure about that. If it even needs to be dealt with. Snowstorms make my head hurt much more where I take pain med(Dilaudid only helps) and go to bed in a dark room with an ice pack above my left eye. If it doesn’t snow, my head is bearable. I don’t know anyone around here with headaches as bad as me. I cannot to to a restaurant because the noise hurts my head. I just stay home all day pretty much while my husband works. I have been out of work for 3 months with no close end in sight. I hope some of this helps.

Don’t give up. You will find something that helps.

Best wishes.
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