New Daily Persistent Headache Support Group

Does anyone here have swollen lymph nodes that appeared about the same time as your headache? Sarah had swollen clavical lymph nodes at the beginning, then behind her ears which led to the discovery that she had had mono. Now she has a couple in her lower back.

random occurence? normal to some with NDPH?

Once again,.....help!

Thanks!

I didn't, but as far as I know I wasn't sick with anything when my headache started. Some of the others who had a triggering infection may have a different answer.

I did but I started with an EBV (mono) infection. I think that most people who have had an underlying immune commponent could quite possibly have had swollen lymph nodes as that shows that there has been an immune response to something.

I got diagnosed with sporadic hemiplegic migraines the same time as EBV(MONO).

I really think there is something else going on, whether it is the mono coming and going (some people get constant episodes of EBV) or something else auto immune. Definitely follow up. Not in a dangerous sort of way, but I think you can eventually get some answers at least about this portion of her condition. It would be interesting (helpful?) to get some bloodwork done when she has these vs. not (assuming they went away in between). I had mono the year before my headache started and after the headache I just seem to be getting one thing after another which doctors think are in the auto immune realm. I've always wondered if the mono sort of triggered everything (although I know not directly as it was too far apart). My mom had a similar thing that she started getting a bunch of auto immune stuff starting after I was born (she was healthy up until then). Best wishes.

Hi,

I also had a swollen lymph node (one, behind my ear) right when my headache started. It, a sore throat, and the headache all came on together, and then the headache remained when the other two went away. The first doctor who saw me (maybe three weeks in? I forget) thought I had mono, but the test came back negative. I've been sick various times since then and once thought a lymph node was a little swollen again, but that may just have been me hoping for a symptom that would give my docs a clue.

Anyway, yeah, it was definitely the most notable feature of the illness that began my headache.

Laura

Didnt realize there were lymph nodes behind your ear until now but I remember having one swollen thinking it was weird acne.

Kate (tortoisegirl)- I really think you are right. The more I read, the more I am convinced that she has some sort of autoimmune issues going on with this that are perhaps at the root of this. Nothing shows up on the sed rate blood work, and so thus far, they have ruled that out. However, the cough that never goes away, the lymphnodes that come and go, and the cycles that she has when the headache increases in intensity and pain level. Also, she NEVER had any allergies whatsoever...not even to dust mites...until after the headache started, and now she seems to be allergic to everything.

I hope you can get to the bottom of it for Lisa. I think due to her age and that she seems to have something else going on gives her a better shot at kicking the headache. Ever since my headache started 6+ years ago I developed one thing after another. Often they came in groups...I developed fibro, eczema, something with my knees, and bacterial overgrowth in my intestines all within a couple weeks! Adult onset eczema is pretty rare apparently.

Sounds kinda similar to developing allergies when there weren't any before. Did they actually do an allergy test and it came out positive, or are you saying allergies based on symptoms? I had childhood allergies but was fine once I reached my teens and then a few years ago I got symptoms again. I sure thought it was allergies but everything was negative, so they call it non-allergic rhinitis (mostly presents as a chronic dripping nose, both ways).

The closest my doctors have come to an auto immune diagnosis for me is non-specified connective tissue disease. All that really means is you have symptoms which fit a few different auto immune diseases but nothing conclusive enough for a diagnosis. Often over time it develops into something such as Lupus or a connective tissue disorder. I hope you can find an immune specialist. I believe they are under a variety of specialties. I have plans to try to get in to see a rheumatologist who practices as an auto immune specialist (but mostly for the fibro). Best wishes.

these were allergies that showed up on testing. She had the total battery of allergy skin tests when she was little because of croup and asthma, but they came back totally negative for everything. In our never ending quest to find some relief, we went to an allergist and she had the whole battery done again--first on the back, and then inserted under the skin on her arm, and she showed allergic for most grasses, trees, and mold; dust mites, eggs, milk, lobster, cats, dogs. Interestingly enough, she really doesn't show classic symptoms of the sneezing or drippy nose, though, the allergist said he could see symptoms in her face.