# post mono headache



## marytx (Dec 4, 2002)

My 20 year old son had mono at college last February, not properly diagnosed until we did bloodwork in May. Since then his headaches have continued, and gotten worse. Now he has them 24/7. Most of the time he can function, but often when he comes home from classes (he is only taking two now, because of this), his headaches are severe. He will lay down in severe pain and be unable to function, sometimes for hours. He also has no appetite. Previously I could hardly keep him fed!

Pain meds do not help. He has been to the doctor several times, and has tried a few different prescription meds, none of which helped. He has had an MRI, which did not show any issues there.

Has anyone had this problem following mono, or do you know of anyone who has? Do you have any suggestions for relief? 

It is going on a year now since his infection with mono!


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## jlxian (Feb 14, 2005)

I don't have any ideas for you, I'm sorry. Just wanted to offer my positive thoughts in his direction. :grouphug: I hope the doctors can find what is wrong --- it does sound like he either still has the mono or it has morphed into something else. Have they checked him for tick born illnesses?


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## Terri (May 10, 2002)

Are his headaches on one side, or on the back of the head? Does he have any sensitivity to light during a headache, or vomiting?

I am wondering if he is having migraines or cluster headaches, or if he is having trouble with his neck.


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## Tracy Rimmer (May 9, 2002)

Mary, are you absolutely sure it was mono? Is it possible that he was misdiagnosed? 

If it WASN'T (just looked like it and was diagnosed accordingly), the doctors could be having a problem now diagnosing his headaches because they THINK he had mono before, but that may have been symptoms of something else manifesting then.

It may just be that being ill before twigged an already present predisposition to migraines, but the fact that they've been getting steadily worse and increased in frequency until now that they're pretty much constant worries me. I'd be questioning the original diagnosis and having him checked by a specialist.


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## marytx (Dec 4, 2002)

His neck is fine, though his muscles were quite tight when I rubbed them the other day. He told the doc his headaches were to the back sides of his head. He always wants me to leave the light on, so he doesn't seem to be light sensitive.

He does not throw up, but does complain of nausea when the headaches are worst.


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## marytx (Dec 4, 2002)

Tracy, when he was sick in February, the doctor told him he had an "adenal virus," and sent him home with meds and a humidifier. No testing was done then. At that time he was so sick he could barely get out of bed for a few days, then fought to catch up on schoolwork the rest of the semester.

When he came home the end of April,he was still very fatigued, and complained of occassional headaches. At that time we had bloodwork done, and checked specifically for thyroid function, diabetes, and mono.

Mono was the only test that came back positive.

The headaches have gotten progressively worse and more frequent since that time, so that they have been constant since the fall. The doctor thinks it has been too long to be post viral, which is why he had the MRI done. Then he prescribed another med, which hasn't worked any more than the others.


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## Tracy Rimmer (May 9, 2002)

My understanding of the mononucleosis virus is that once you've had it, you'll always test positive. 

An MRI won't always show a problem. Ask me how I know.


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## marytx (Dec 4, 2002)

I understand that he will always test positive, but am sure that is when he had it.

So, what would you do next? (I'm afraid to ask how you know.)


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## marytx (Dec 4, 2002)

He did also start the Hep B shot series during the summer, which I have read may cause headaches, so we have not gotten the final booster. (These were supposed to be preparatory to serving a mission, but he has not been able to go because of the headaches.) The doctor does not think the Hep shot would cause a headache lasting so long.

He also had viral meningitis as a newborn. I have been reading that some rare cases mono can lead into encephelytis. But I'm thinking that would not last for so long without other symptoms.:shrug:


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## Tracy Rimmer (May 9, 2002)

I have had multiple MRIs in the past eight years. The doctors keep telling me that MS cannot be diagnosed without clear indication of lesions, which should show on an MRI, yet I continue to have symptoms that don't really have any other explanation. I've been chasing my tail on this for years. Obviously, my faith in MRIs has been less and less as the years pass.

You say he has no other symptoms, but what about the nausea? What about the lack of appetite? Being a migraine sufferer myself, I know that the headaches can easily cause this, too -- but you have to look at everything as a symptom until it's proven that it's not. Taken in a different context (the lack of appetite as a symptom rather than an effect), might make things look different. 

You might try having him keep a journal of everything. What he eats, what he does, where he does it. Any stress he feels, or other emotions -- unexplained depression, deadlines, activities, and everything he consumes and where he consumes it. Keeping a journal may help him make correlations that indicate cause. This is the only way I've stayed sane.


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## HOTW (Jul 3, 2007)

It sucks when somethign si wrong and Dr's don't have aclue. I think sometimes they rely too much on tests and not on instinct. My daughter had mono and once you have it you cannot donate blood-she gets a lot of garbage from people who tell her she should and she tells them she can't they think its because of her fear of needles but she has learned to just tell the flat truth and it stops it. PTSD can't be seen but it exists. Mono is also linked to the disorder that makes you tired all the time can't rememebr the name. He might need to take it very easy and drop the college classes til he recovers. That was the one thing my DD Dr told her. Absolute rest with minimal stress. Wish we could help more


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## Pink_Carnation (Apr 21, 2006)

Has he been to see a nuerologist? If the regular Dr. can't figure it out that would be my next stop. So many things can cause really bad headaches...one I had they said was an allergic reaction to medicine.


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## marytx (Dec 4, 2002)

Tracy Rimmer said:


> .
> You say he has no other symptoms, but what about the nausea? What about the lack of appetite?


Yes, I meant to be mentioning it as a symptom. I may not be expressing myself well.


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## Canning Girl (Jan 13, 2010)

I had mono as a senior in high school and was hospitalized for dehydration. For YEARS I woke up every morning with a sore throat and was easily fatigued. I don't remember having headaches, though. I would keep after the doctors until I got some real answers, if I were you.

HOTW, I've donated blood many times in the 20 years since I had mono. Never has it been on the list of questions they ask that preclude someone from donating.


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## TheMartianChick (May 26, 2009)

HOTW said:


> It sucks when somethign si wrong and Dr's don't have aclue. I think sometimes they rely too much on tests and not on instinct. My daughter had mono and once you have it you cannot donate blood


My sister donates blood on a regular schedule, as often as they will allow her to. She had mono during her sophomore year of college. Having had mono has never been an issue...Now if she'd had hepatitis, then that would be a different story!


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## marytx (Dec 4, 2002)

I thought of another symptom. His eyes sometimes bother him with the headaches, which I think would be normal. But when he first started complaining more about them, he would say that his eyes "itched" a lot.
We have, also, had his eyes examined.


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## Tracy Rimmer (May 9, 2002)

I take it the eye exam was normal? Did he see an optometrist or an ophthalmologist?

Has he seen a neurologist?


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## HOTW (Jul 3, 2007)

TheMartianChick said:


> My sister donates blood on a regular schedule, as often as they will allow her to. She had mono during her sophomore year of college. Having had mono has never been an issue...Now if she'd had hepatitis, then that would be a different story!


Well my daughter had it about 5 years ago and the Dr's told her she was not able to donate blood.


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## Terri (May 10, 2002)

A headache at the back of the head is usually a sign of muscle tension.

Muscle tension can be a sign of a problem in the neck, emotional stress, or?????

Severe pain can depress the appetite and cause nausea.

Alas, that is most of what I know. I think a consultation with a different doctor is in order. SOMETHING is goin on, there!


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## marytx (Dec 4, 2002)

I think at this point the tension is feeding the headache and the headache is feeding the tension.


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## Tracy Rimmer (May 9, 2002)

mary said:


> I think at this point the tension is feeding the headache and the headache is feeding the tension.


ENTIRELY possible!!


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## wogglebug (May 22, 2004)

I'd be inclined to ask for a second opinion, but not in any nasty way. Just that sometimes fresh eyes and fresh opinions bring new insight.


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## Macybaby (Jun 16, 2006)

I have siblings that had mono, my daughter had mono(she was hospitalized for five days) some of my coworkers had mono (all of them as teens or young adults). - but not one had problems with headaches after wards. 

I'd be inclined to think the headaches aren't related to Mono but something else, or if it is related to mono, it is because something got damaged and needs to be dealt with. 

Cathy


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## marytx (Dec 4, 2002)

From what I have read, only a small percentage of people have these longer term effects from mono. Since he is also the one who had viral meningitis as a newborn for no apparent reason, I'm thinking he is one of those people, and his body just deals with things differently.


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## ANA (Apr 22, 2020)

Hello Mary! My nephew has exactly the same symptoms as your son. He is 24 and had mononucleosis early last year. Since then he has had severe and frequent headaches, often disabling. Did you get any help for your son?


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## Grandmotherbear (May 15, 2002)

I had awful migraines- my first time trick or treating, and the first time I ate chocolate. New food allergy? 
I am suspicious of chiropractors claiming to cure everything including cancer, mine really helped my bad back


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