Hemi-crania continua

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

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

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.

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. 

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.

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.   Good luck.  More research really needs to be done into finding another treatment for this terrible disorder.

 

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).

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

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.

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.