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

Posted by sgrenier100 @sgrenier100, Aug 30 7:19pm

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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Hi….. Sounds unbearable. I've had a lifetime of headaches. Found lots of possible reasons. Never answers from any doctor. Had much improvement when I got an infected root canal pulled. Which was an incomplete root canal done over 25 years earlier. No doctor ever noticed. Luckily, a specialist noticed when he was doing root canal on tooth next to it . Also had much improvement of severe cough from constant sinus drainage at same time. Seems docs also ignore sphenoid sinuses which can cause severe headaches. Docs seem to only know about pain from frontal sinuses. Did you happen to get a covid vaccine or booster just before your headaches started. Seems to be another possibility docs are sworn to ignore. Allergies or ( sensitivity) to some foods got worse after my vaccines . Setting off new headaches. Such as nuts, dairy, processed meats. Did you get tested for parasites? A simple infection is also ignored by docs if you don't have usual symptoms in blood tests or no fever. Antibiotics always cleared my sinus drainage, without usual infection symptoms. Docs always refuse to give antibiotics for months, claiming it's always viral. But for over 25 years, was the only thing that fixed my cough, headaches,drainage. Constantly not noticing the constant infected root canal.
I believe you'll find some answers. Keep a diary. But don't expect any doctor to believe you, even if you have the exact same thing happen , year after year. Because they don't believe infections exist without a fever.
Good luck. Praying for you. Keep looking. T

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@taml

Hi….. Sounds unbearable. I've had a lifetime of headaches. Found lots of possible reasons. Never answers from any doctor. Had much improvement when I got an infected root canal pulled. Which was an incomplete root canal done over 25 years earlier. No doctor ever noticed. Luckily, a specialist noticed when he was doing root canal on tooth next to it . Also had much improvement of severe cough from constant sinus drainage at same time. Seems docs also ignore sphenoid sinuses which can cause severe headaches. Docs seem to only know about pain from frontal sinuses. Did you happen to get a covid vaccine or booster just before your headaches started. Seems to be another possibility docs are sworn to ignore. Allergies or ( sensitivity) to some foods got worse after my vaccines . Setting off new headaches. Such as nuts, dairy, processed meats. Did you get tested for parasites? A simple infection is also ignored by docs if you don't have usual symptoms in blood tests or no fever. Antibiotics always cleared my sinus drainage, without usual infection symptoms. Docs always refuse to give antibiotics for months, claiming it's always viral. But for over 25 years, was the only thing that fixed my cough, headaches,drainage. Constantly not noticing the constant infected root canal.
I believe you'll find some answers. Keep a diary. But don't expect any doctor to believe you, even if you have the exact same thing happen , year after year. Because they don't believe infections exist without a fever.
Good luck. Praying for you. Keep looking. T

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Great tips, @taml, that @sgrenier100 can use for further investigation. I especially like the tip about keeping a journal. Noting symptoms, when they happen and what other things were happening at the time can help communication with doctors. You may notice patterns or triggers that can be further clues.

@sgrenier100, my niece has chronic lyme disease and your symptoms sound quite similar.

Here are some related discussions that may interest you:
– Diagnosed with Chronic Lyme Disease: Anyone else? https://connect.mayoclinic.org/discussion/lyme-disease-thank-you-all/
– Lyme disease and neuropathy https://connect.mayoclinic.org/discussion/lyme-disease-and-neuropathy/

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If you haven't seen an infectious disease specialist, it might be a good idea since you were in Mexico and there are myriad tropical bugs one can pick up.

My brother spent time in the Caribbean and, unbeknownst to him, picked up a semi-rare parasite. He had a lot of low-grade symptoms, and extreme fatigue, and saw multiple doctors when he got back to NYC. To no avail. Finally an infectious disease specialist diagnosed and treated the condition, thought to be caused by a bite from a waterborne insect that thrives in some lagoons near where he stayed.

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@callalloo

If you haven't seen an infectious disease specialist, it might be a good idea since you were in Mexico and there are myriad tropical bugs one can pick up.

My brother spent time in the Caribbean and, unbeknownst to him, picked up a semi-rare parasite. He had a lot of low-grade symptoms, and extreme fatigue, and saw multiple doctors when he got back to NYC. To no avail. Finally an infectious disease specialist diagnosed and treated the condition, thought to be caused by a bite from a waterborne insect that thrives in some lagoons near where he stayed.

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did he have a headache?

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@sgrenier100

did he have a headache?

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I don't remember all his symptoms, mostly the fatigue and general malaise.

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Have your doctor check your intercranial pressure.

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As mentioned previously, see an infectious disease doctor. Has anybody suggested a bal? In layman's terms, they take samples of stuff that is inside your lungs. I had one done last summer and they found multiple things that were making me ill.

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I am so sorry that you are experiencing this 😢.
While I have no idea of the root cause of your suffering, I would like to pass on what my neurologist said to me that has dramatically changed my life.
Add extra B2 and Magnesium to your vitamin regimen. I now take my multi which has lots of B's, in the morning, a multi B with lunch and B2 & Magnesium glycinate at bed time. Wow! What a life saver for me!
I hope this can help reduce the number of your headaches as well as the intensity of the ones that may still happen.
With love ❤️

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