My Behcet's headaches - "Atypical migraines" - Behçet's UK

I don't know about the availability of perfusion MRI's at the Behcet's Centres of Excellence, but it might be helpful to print out the full color version of the article I gave a link to and discuss it with your neurologist. It's common for Behcet's patients to have "normal" MRI brain scans when evidence of the problem could be found with p-MRI's or SPECT scans.

Headaches in Behcet's can be severe, like vascular migraines, and can cause cognitive (thinking) and balance problems. I suffered from these for years and was treated with migraine medicines, high dose prednisone, Enbrel, Remicade, methotrexate, Cellcept, Imuran, you name it. Caffeine, either via coffee or caffeine pills, are also helpful to shrink swollen brain blood vessels. All these drugs would help somewhat, but the Behcet's migraines kept coming back.

My Behcet's headaches struck in the lower back of my head and even made it too painful to rest my head on a pillow. They had a sensation of warmth and the pain would spread up from the back to the top of my head all around, not limited to one side. Mine did not cause photophobia (sensitivity to light) or sensitivity to noise, but sometimes the pain was so bad I also vomited. My neurologist called them "atypical migraines" and agreed that they were caused by my Behcet's even though my MRI's were normal.

When I had these headaches I would become confused and had trouble thinking, talking, and typing on the computer. I could always tell the difference between these Behcet's headaches and my sinus headaches, tension headaches, occipital neuralgia, and exertional migraines. Fortunately after years of on-and-off Behcet's headaches, I get them very infrequently now. Before I developed these severe Behcet's headaches, I was still able to work, but after they began, I was approved for full disability benefits.

18 Replies

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andreafm

6 years ago

Thanks Amietamant.

Your headaches seem pretty much like mine and in the same place alougth lately I have been getting new one's in the frontal lobe area which are more accutely affecting speech, vision, memory, working familiar items [computer, setting up TV recordings , oven timer etc] and behaviour/personality....I also have ptosis down one side of my face and this also becomes very aggrovated at this time.

The MRI picked up lots of tiny live lesions in this area and so I would think the p-MRI's or SPECT scans would be useful and more indepth to locate the specific areas this is affecting.

The behaviour/personality problem is really quite distressing at times and at these times, I have to work hard to keep this on an even keel.

Do you happen to know where these scanners are available and is there easy access to them. I have heard of the SPECT scanners which I think are more widely available but haven't heard of where the p-MRI's are located. I live near London and so would think if thet were available it might be near here.

Andrea

AusBehcets

My Neuro did not want to subject me to any more radiation in the form of a perfusion brain scan. Maybe he had some wisdom. He said such a scan would just show low blood flow and the depression...which I have already told him I have. Then he promptly said "and we don't know exactly what depression is yet"....ahhh the wisdom of modern medicine with the brain as the last frontier!!!!

He happily referred me on to see the Neurogeneticist (Mitochondrial Diseases expert) more because I had made a case on paper. She decided to do her work-up...and part of it was 2 radioactive nuclear med gut motility scans!!! These provoked a bad reaction in me that I am still getting over...my gut must be fragile & I ended up with an episode like peritonitis/serositis needing Flagyl then Doxycycline.

The Mito Prof has done a brain MRI/MRSpectroscopy - Lactate to exclude MELAS. That was non-invasive, just need to survive the noise & claustrophobia...and not have any metal implants.

I'm confused about SPECT scanners...do they involve CT as well???

Michja

Hi Amietamant,

I can not believe I'm hearing the word "Atypical migraine". In fact I feel sick about it and the pain those words put my daughter and our family through for two years.

When my now ten year old daughter was five she started with these horrible headaches. As the months went by these increased in pain and frequency. After one year she was having three attacks per day and vomiting and passing out in pain. After a neurologist placing her on all different types of medicine and clear MRI's, I turned to the Internet for help. As it turned out our daughter had trigeminal neuralgia. She only ever had the pain in the side on the nose then travelling up the side of the nose and around the eye socket. Tegretol was used to prove and treat the symptom. She was perfect until she had a bad reaction to the medication. But it proved that she had TN. Then she went on Gabapentin and vitamin B12. Both wonderful but we thought they were creating ulcers, now we know it to all be related to BD. TN is a blood vessel or vein tapping on the nerve at the base of the brain, now it's all her veins. She is on many medications including Gabapentin. When her head is bad is stops her in she tracks. But after getting out of hospital today due to her bowels not working, I truly can not say one thing is harder than the other for her to cope with.

We all may vary in our beginnings but unfortunately BD has been the end result.

Good luck.

amietamant

in reply to Michja

Trigeminal neuralgia is diagnosed if the severe headaches are accompanied with specific facial symptoms, as you learned with your daughter. As I described above, I've had a number of different types of headaches plus other weird head pain problems such as nummunlar headaches and burning scalp syndrome; I also had an episode of Bell's Palsy.

It's difficult even for neurologists to determine which headaches may be related to our Behcet's and what are separate headaches (sinusitis, for example). Keeping track of whether our headaches flare up along with other Behcet's symptoms can be useful, as well as noting what types of treatments improve our headache pain.

The years during which I struggled with frequent Behcet's headaches was truly the worst time with my disease, except for when I nearly died from fungal infections due to taking immunosuppressants and anti-TNFa drugs. I recall thinking that I would be better off if I just cut my head off. Those were dark days...

Jackie_1234

in reply to amietamant

4 years ago

Hi my name is jackie and my daughter is 17 she has been diagnosed with behcets she almost died this summer while on vacation due to infection and lesions in her lungs she deals with the mouth ulcers the ulcers on her vagina. But as of Friday she has been hospitalized at the children's hospital with severe pain in her head going down her back and throwing up they have done spinal tap MRI exrays ct scans and nothing is showing up but it has been 6 straight days her pain and symptoms have not changed the drs are saying bad miagrane but I really don't think it is my daughter says it's something wrong but no one is listening to her coukd this be her behcets in her head causing this pain and MRI not picking it up ???

I'm desperate I have wTched her suffer to much since she has been 12 , they removed her large bowel thinking it was ulcerative colitis but not recognizing it was her behcets all along that they couldn't detect at the time due to a lack of symptoms

If u have any advice or information for me it will be so greatly appreciated !!!

in reply to Jackie_1234

Hi there Jackie....such a sorry story about your daughter....I am guessing she is being dealt with in the UK but please tell us if I am wrong.

I wonder if you could get her Specialists to contact the Centres of Excellence Specialists to help with this. You can ask them to and this is the link to the 3 Centres in the UK.

behcets.nhs.uk/

it will give you the details of the 3 Centres of Excellence in England and the Doctors that are dealing with your daughter can contact direct and get advice.

I myself have neurological symptoms with head pain etc but they didn't show in an MRI or spinal tap. I was lucky that my neurologist decided to treat me anyway with the idea that the inflammation can be so defuse that it doesn't always show in the tests. I was in a very poor state but now am picking up [I believe] because of the treatment I am being given.

Dr Desmond Kidd is in my opinion, the best neurologist in England for your daughters specialist to try and contact as he has had lots of experience with Behcets and can advise them. Also all the Doctors who work for the Centres of Excellence have experience on how it affects us.

You sound like a very proactive mother, which is good because you can fight for the right attention that your daughter needs.

good luck with this and I hope she gets the right treatment soon.....please post any questions and we'll do our best to answer

PS you might like to put up a new posting as this one is over 2 years old and may not be picked up by everyone in the group

sneakyblonde

2 years ago

Hi, it's Cindy, again,

{{{{ I just proof read this Darned thing! It ended up a BOOK! Sorry. Also, it may be considered Graphic or Explicit by some readers. I apologize, if anyone finds it offensive. But, Behcet's disease IS Graphic, Explicit and Offensive, due to the nature and location of the Ulcers, etc.

I started to write about Neuro-Behcet's head aches, my personal story about Neuro-Behcet's HEAD ACHES - and WHAT has worked for ME...

Have you tried the Nicotine Patch? It is expermental and being studied even more, right now, by Dr. Yazici, et all. Dr. Yazici, IS a "world renouned", "fore most doctor", on BEHCET'S disease!! He is Turkish - where the most cases of this "Devil Disease" occur. His Dad is a Doctor in Turkey, while he and his brother, shuttle back and forth - working on World Class studies, research and more! ( If any of you do independant research of medical papers, look for his name. He is at the New York hospital, for Behcet's diagnosis and treatment.

Now, My Neuro-Behcet's head aches and what worked for me. (Besides the Blessed, Morphine or Demerol, I got a shot of! This is not the first or last head ache - Just the most memorable... (I was not yet diagnosed and the hospital said they were, "Tension head aches." I had been to the hospital and gotten a pain shot several times over the years, but never THIS BAD!

I would be in the corner of the couch, in my robe... So sick, I prayed to die! I couldn't eat, sleep or shower. When I got up - I heaved my guts from just moving around.

A BEHCET's Headache, at it's very WORST!! I desribed it as feeling like I had been hit in the back of the head /neck, with a Baseball Bat! Brain Shattering. I still have them frequently, but not THAT BAD!

My third husband, (Now Ex), took me to the Doctorr's office for an "Emergency Call". On the way, (about 30 miles each way), I had my hands over my eyes, with my eyes shut tight, the "Photo Phobia" was so bad- my stomach would roll and lurch from on coming head lights...

At the doctor's office, on an "Emergency Office Call", the doc took one look at me - and KNEW - I was in very bad shape. (I was NOT a "Drug Seeker", looking for a free "High").

He filled a syringe and ordered, "Give me a hip." And give him a hip, I did! I flipped my robe back...

Well, there it was, my NAKED, white backside - right there for the whole world to see... I only had on a robe, no pajamas. NOTHING under that big, terry robe... (My husband later said, "That poor doctor's eyes, bugged out, at the shock of my unexpected nudity!" {{{ At that point - I would have offered "Sexual Favors", just to make the pain STOP for a whille!! }}}

I don't know what that wonderful Doc "shot" me with. In about 10 minutes - I felt nausous, then dozed all the way home. I was out of it, I slept or dozed for about 2 1/2 days before I came completely awake. . Only waking up to eat and use the bathroom. My head ache was finally GONE!

Years later - I was diagnosed with Neuro-Behcet's disease. I found out about QUITTING SMOKING, it causes "Flares". With worse Oral Ulcers, Vaginal Ulcers, Head Aches and exaustion, getting much worse.

(Only ONE article about the Nicotine patch & quitting smoking was on-line when I was searching for answers years later. Now there are many. With a larger study on-going right now. What is the connection? Only studies will tell - BUT THERE IS ONE!

This is the first time I have ever shared this true story, of how bad these head aches ARE. I want people to KNOW, they are THAT bad! We are not faking for sympathy.

I found out I am Allergic to the Nicotine Patches, (I get hives under it).{{{ This is not the BEST option for anyone! But it works for ME... I use "Chewing Tobacco." Just a Pea sized pinch, between Cheek and Gums. NOT a HUGE "WAD", like some sports figures use). It keeps both types of Ulcers to a minimum for ME. With very few head aches, that are not as bad or as often. (I also drink Coffee AND Espresso, with some sugar and milk - no frothing. I like it Iced in summer.)

So, the Tobacco and Caffiene, works for ME. I think we ALL have to search out our OWN Studies and Treatments, within reason.

The Nicotine Patches and Gum, comes in different dosages. Try the lowest possible one, if you want to try it. Make sure your doctor knows and it does not interfere with any meds.

After diagnosis, I was started on Prednisone. That helps so much - but I have gained 40 pounds! (Why are they called, "Love Handles"??? No one loves them - and no one wants to handle them!)

I am allergic to Wheat and Corn makes my joints hurt, I crave Hot Sauce when in pain or a storm is coming, (Barometric Pressure).

{ I am so sorry, this is soooo long and somewhat graphic. I hope I have NOT offended anyone. That was NOT my intent.}

If just ONE person, can show THIS - To a loved one, friend, co-worker or ANYONE, who thinks they are faking, whinning like a Mosquito and grossly exaggerating the PAIN of Behcet's head aches or Ulcers; Then I have had a small impact on someone's life and helped a fellow sufferer!!!!!

Bless you all and be healthy,

Cindy,

Central California, USA

P.S. I am off to check out other people's, Neuro-Behcet's FALLS and DEMENTIA. Yep! Here it comes for me.... I fell yesterday and wrecked myself! Maybe there are meds for it? I am going to find out. Wish me luck!