Post Viral Constant Headache
My daughter 13 years old came down with mono last Dec.--diagnosed with blood test Dec. 31st. Her headaches at that point came daily with the onset of dizziness with a level 8 headache quickly to follow. Maxalt did little. Her headaches, once they started (every day) would quickly become bad & last at the same level or more until she fell asleep. At that point in time, notably however, she would wake up headache free for a few hours before becoming dizzy and the quick onset of a bad headache.
In April, the headaches became constant at a level 8 or 9 (no break where she is headache free). She also has nausea, light/sound sensitivity and can get worse with weather changes and her period.
Her MRI is normal. She has tried neurontin, midrin, elavil, and baclofen which have done nothing for the pain and added difficult side effects to her day. She had her first infusion therapy yesterday by injection (not drip) of toradol which did nothing. She had her first Botox treatment in April which has kept her headache from going to a "10", and takes Fiorecet (not frequently) when her headaches are a "9" which brings them to an "8". Her headaches are in the forehead & temple area.
She will start biofeedback tomorrow, has tried acupuncture, is on Petadolex which helps some, has tried chiropractic adjustments with massage therapy- which made it worse. Can you recommend anything? Steroids? Prior to coming down with mono she enjoyed a great active life in and out of school. She is a very engaging, intelligent & full of life child that has exhibited amazing coping skills well beyond her years. She has been able to keep a daily happy heart in spite of her continual 6 month struggle. In summary, can you help her to break the mono induced- constant level 8 -9 headaches with nausea, light/sound sensitivity?
Thank you----we need you.Answer:
I am sorry your daughter is having such trouble but glad that anxiety has not taken hold of her because of this.
You do not mention whether or not she has seen a neurologist, preferably one who specializes in headache. It should be a pediatric neurologist, but some adult headache specialists will see children over the age of 12 due to the lack of specialists for this population. Since you are in MN, I would recommend the Mayo Clinic as they do have a headache center there.
Here is the link to the Mayo Clinic website.
It sounds as if your daughter did have a post-viral type of headache which has now moved into status migrainosus.
A headache that is that severe daily, with aversion to light and sound and some nausea is clearly a migraine.
To break a headache like this steroids would be appropriate. We have done IV infusions of steroid even for children as the small prick of the IV is far less painful than the chronic daily headache. A headache center would be able to direct this properly for you. If oral steroids she has to be on them for 2-3 weeks to break this.
Has she been on Topamax? A low dose of 50mg per day would help in addition to going back on elavil 5mg at night 2 hours before bed (1/2 tab). Yes there are side effects but these will wear off over a few weeks and the headache will settle down..it may take many weeks to months to get it under control. We find Petadolax to help with children but it must be combined with medication..do everything at once not stepwise (one after the other). Lifestyle
is really important in kids. They must go to bed and get up the same time everyday for 6 months..including weekends which I know is tough in the summer but it helps the brain settle down. No caffeine.
Once the head pain comes down in intensity, a triptan like Maxalt MLT or Zomig ZMT would start working. These are nice if a child has nausea as they are melt wafers. Fiorcet is not appropriate in my opinion.
It sounds like a lot but this really does work and the meds are on board for only a few months and then withdrawn. The key is to do everything all together. Start the Topamax, Elavil with the steroids for a few weeks and do the lifestyle changes. Biofeedback is great too.
Mary Kay Betz MS RPA-CComments:
My daughter had a headache for about 4 months and no one could figure out what was wrong with. She also had some strange vision problems. We started out going to eye doctors and having all kinds of tests run including at Emory in Atlanta. All the tests came back good but her head was still a 7 to 8 with pain pretty much around the clock. I had been to Diamond Headache Center in Chicago around 6 years ago and they had helped me so I took my daughter. In less than 1 hour the doctor said he knew what it was and it should not be any trouble to clear up. Within 2 days they had broke the headache with DHE. She still has some mild headaches at times and is on preventative medicine but overall is doing real well. In talking with other parents while we there, most all of them had good results. Even if they could not totally get rid of the headache they brought the pain level way down without pain killers. We met a lady there in the adult section who had a headache since 2001. Before we left, she said her headache was gone. I'm sure everyone doesn't get the results they want but at least Diamond is very knowledgeable about the subject of headaches and how to treat the headaches.Answer:
An excellent example of how a good Headache Center can effectively treat people. Most neurologists are not headache specialists, so treatment of migraine and headache may not be optimum.
My daughter has headaches accompanied by dizziness. This was almost daily for months. She never had mono but we did a daily journal and after a few weeks of doing that discovered that she has a terrible headache reaction to chocolate. Maybe there are things that trigger it. I don't know but may God Bless you and be your guide I know this must be frustrating to you both. Answer:
Good for you! So many times people discard the diary as a silly idea but this is a good example of how it can localize a headache or migraine food trigger.
Headaches accompanied by mild vertigo are usually migraine, although rarely seizures may also have these symptoms in children. If they return have her see her doctor for treatment.
Mary Kay11 year old with virus
My 11 year old son has also had a very similar experience to your daughter- it's heartbreaking to watch them suffer like this. He also had mono in October last year and has had a constant headache since- he's had lumbar puncture, brain and sinus scan and has gone from being a super sporty bright vivacious boy to having a constant headache, no energy and can barely have his friends call for 30 mins before he needs to go back to bed. We've tried the meds, the alternative therapies - nothing- he has a good neurology team and they have suggested topamax or gabapentin as next step- we don't know which way to go- good to share hearing your experienceAnswer
Sorry this is happening! I would recommend topamax as gabapentin in my experience has less effect on headaches. Also consider a course of steroids for a couple of weeks.
Failing all that, post viral headaches are a meningeal irritation and may require opiod meds such as lortab or fentynl for awhile. When used short term, there really a very low risk for addiction and the pain relief is good. We generally use only in these cases.
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Post-Viral Chronic Daily Headache?
(St. Louis, MO)
I've looked through your web site to see if I could find a similar set of symptoms / circumstances to mine and I didn't, but I wasn't super thorough so I may have missed something.
I'm 49 years old and before 2000, was always a healthy person, hardly ever sick. I had a viral cold-like infection in with a sore throat in May of 2000 that left me wiped out for almost a year. It originally presented with chest pain and numbness in my left arm (thought I was having a heart attack and went to the ER). I later experienced numbness on the entire left side of my body and frequent headaches originating in my right temple. I'll move the story forward here quickly went through many, many tests MRI's CT scans, Infectious disease specialists, neurologists and a long list of medications including: Neurotin, Amatripyline, Nortriptyline, Paxil and Lexapro.
No one ever found anything of substance. I was told, I had Lyme disease, toxoplasmosis, and a few other things, but they were just pokes in the dark with symptoms that didn't fit. I was never really "diagnosed" with anything official other than Post-viral encephalopathy, and that wasn't official.
Basically in time the symptoms seemed to be self-limiting and beginning in about 2003, through the help of a friend of a friend (a life saving anesthesiologist with MS), I found that diet coupled with omega 3 seemed to be effective in holding off the headaches and fatigue and I could live a normal life again. Over the years, I would transgress and get away with it for a while -sometimes years, and then either I would cross a threshold or some other triggering event would take place and I would have a relapse that would last between one and two weeks. In 11 years I've had about 7 recurrences of these symptoms, the last was in March of 2010.
That takes me to this most recent July 7th when the "old friend" reappeared again, and this time not to go away with the usual diet restrictions. Since July 7th, I've had about 10 non-concurrent days without any symptoms at all.
Here are my symptoms (no different from any past flare up in years past): "Pressure" pain in my right temple, not constant, but there a good deal of the time. Extreme fatigue (and I mean extreme, I'm really tired) and malaise "flu-like" feeling, best described as moderate carsickness, lack of appetite, occasional numbness in my left cheek. Of course depression and anxiety (I'm missing a lot of work).
My GP has put me on Topamax and I've had a sleep study to see if I have apnea (negative). Had a series of blood tests to check for ongoing inflammation, thyroid, blood sugar, infection, all normal. I?m waiting to see a new Neurologist and I'm sure he'll want to re-image my head, but as in the past, I'm sure it will show nothing, it never has. I'm also on Tramadol for pain, but am very wary of this and am trying to use it only when necessary because I've been on the rebound roller coaster before, and it's not fun.
I guess my question is, my condition doesn't really seem to fit the chronic fatigue or MS profile, nor does it seem to be cluster migraine, in fact, no one has ever offered any sort of diagnosis. When I ask (and I have often) I have never gotten a straight answer or an "I don't know" which would actually be refreshing. I don't really have much faith in the Topamax, as no medicine I've ever taken in any dosage (aside from pain medication) has had the slightest effect on the headache / fatigue, but I'm always willing to try anything, especially now as I'm getting pretty worried and a little desperate.
Should I be looking for a pain clinic? Is there some specialist anywhere in the country that you know of who has experience in dealing with this kind of post-viral chronic headache / fatigue? Should I be considering the Mayo Clinic? Anywhere else? Any and all help and or advice would be greatly appreciated.
First of all, thank you for being so thorough with your history. I do agree with whoever told you that you may have had Post-viral encephalopathy which is a fancy way of saying you had the virus affect your brain. Most often patients get a post-viral meningimus or irritation of the meninges.
Just so you are aware of your own symptoms, whenever someone has numbness all down one side of the body, it most often is a symptom of anxiety
. It is also common for this symptom to show up during a headache, particularly on the face.
I am glad that you made some lifestyle changes as clearly this has helped with your headache syndrome.
When you have a "relapse" clearly you are having episodic migraine. A one sided headache in the temple, dysequilibrium (motion sickness), anxiety symptoms during the headache and loss of appetite all spell migraine.
The loss of appetite means low level nausea. During a migraine the gut slows down and nausea begins.
I am surprised that no one has tried a triptan, such as Imitrex or Maxalt for you to take at the onset of the headache. Tramadol is OK but really not the best. I never use it for migraine. Your GP is actually on the right track as Topamax is the best option to prevent the headaches. 85% of people respond but it is dose related. Dose can range between 100-700mg for migraine prophylaxis.
I would also recommend that you try migraine vitamin therapy. Alternative therapies in migraine
really do help but you have to give it at least 90 days.
Finally, here is a list of headache specialists
in the United States. Pain management is not the way to go..get to a headache specialist who is board certified. You do have a headache center in your area, the Ryan Headache Center
so I would start there.
Mary Kay Betz MS RPA-C
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Does the scenerio above sound like you? If not, or if you think you need more information please read about different types of headaches
to find out which type of headache you are experiencing.
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