Undiagnosed/persistent headache, hopeless no one can figure it out

Posted by sgrenier100 @sgrenier100, Aug 30, 2022

Background - Went to Mexico in beginning of may and came back with rotavirus (headache didn’t start until next month). On June 3rd, had a sudden headache started out of nowhere (not prone to headache) that gradually got worse through the day and days after. It felt similar to a bad tension headache with severe pressure in my head with nausea and hot flashes. Prior to the headache, I randomly had days of nausea, abdominal pain, diarrhea, fever and chills. The headache persisted for a wee before going to the hospital and no meds helped competely unresponsive. I had every test CT, MRI, EEG, umber puncture but nothing abnormal found. They said I had a refractory migraine or abnormal migraine. Went to neuros, headache specialist, pcp, ER, and no one can figure it out. Then I got tested for lyme and I had an abnormal result - I tested positive for igg 41, 45, 66, and 39 and I’m waiting to get test back to see if I’m positive for co-infections. Other than that I have no idea what else is could be besides lyme. Many people suspect that my headache is from lyme but I’m not sure. Very frustrating to not get answers. I also have had elevated liver enzymes and autonomic dysfunction symptoms such as fast heartbeat, lightheaded, and low blood pressure, nausea, but my main symptom has been this headache. Not sure if it could be another tic-borne illness or parasite?

Headache description for reference:
Headache constantly changes with sensations of air balloon feeling, brain tingling/tickling inside my forehead, head feels full or stuffy like theres a big cloud inside my head/fuzzy around my brain, weird sensations in my head some crawling feeling, gets worse if I try to move my forehead around sometimes with sharp stabs; most of the time I have pressure and strain/tension in my head and deep muscle tension, brain freeze/ice pic headache type and deep tissue pain soreness spots everywhere, painful spots on forehead when pressing on it, muscular or vascular type of headache or bruising/hurts to touch, get bad waves of pain and it moves around my head a lot, sometimes its not painful but feels really strange, occasional brain nausea, zaps shooting pain and stabs all over nerves, vibration or buzzing sensation in head, pain on top of head (pain is mainly on forehead with 2 spots that hurt to press on, sometimes temples, and top of head, my nerves hurts and it feels like they're damaged)

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Did you ever find out what this was or how to ease it?

REPLY

Holy cannoli, that sounds awful!

I get migraines and recently purchased a head wrap with embedded gel packs that I freeze and wear to ease pain. It helps a lot.

I also get nausea sometimes and find that hyperventilating helps that. Of course Advil helps more.

And I get both hot and cold flashes.

As to Lyme, ya gotta find the right doc who will take that seriously, and who is competent to diagnose and treat it.

Also re: blood tests for Lyme, good that you got them done. But it matters if the antibodies (immunoglobulin) are type IgG or IgM, not just the numbers (they indicate when the response happened).

I thought I had Lyme but it turned out to be PMR. But the migraines continue. Mine are all, 100%, digestive. I get blocked and the gas pressure builds up (I inflate like I'm 5 months pregnant). I guess it must be referred pain because I don't feel it in my guts; I have awful headaches instead. As soon as my guts clear (ahem), the pain is gone, I deflate, my energy returns (and my stool resume their normal caliber; when I am sick with migraine they are pencil-thin).

Don't give up, but meanwhile, I hope you can find some symptomatic relief.

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