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Posted 6/29/2023 11:34 PM (GMT 0)
A question for those of you who have dealt with debilitating headaches, Occipital & Trigeminal neuralgia

I have cycled through neuro drugs typically used for headaches/nerve pain. The pain and discomfort from these symptoms has become debilitating. I have tried (Lamictal, Trileptal, Topomax, lyrica) and they all didn’t work for me.

I only take Gabapentin and I’m at the max dose but the headaches have become unbearable and daily. I’ve also tried things like nurtec and sumatriptan that haven’t made a difference. MMJ didn’t help.

The only things that provide relief are cbd creams, ket nasal spray and the gabapentin.

I’ve done IV abx for months and have been on orals for months (I’m currently retreating babesia). Many symptoms have gotten better but for some reason my head pains have gotten worse and I’m looking for any advice.

Has anyone been in my position and found medications that have helped?

Thanks in advance to those who can provide any suggestions about this.
Posted 6/30/2023 1:31 PM (GMT 0)
Have you tried anything for lymphatic drainage - herbs or lymphatic drainage massage?
Posted 6/30/2023 1:41 PM (GMT 0)
“ I’ve done IV abx for months and have been on orals for months (I’m currently retreating babesia). Many symptoms have gotten better but for some reason my head pains have gotten worse and I’m looking for any advice. ”

- could be from different things - toxin buildup leading to increased inflammation or even intracranial hypertension

- I think you can talk to your doctor and get checked for intracranial hypertension.

- what are you doing to detox? Do you include binders?

- Do you take any systemic enzymes for hyper coagulation - serrapeptase, nattokinase, lumbrokinase?

Just some ideas off the top of my head.
Posted 6/30/2023 6:08 PM (GMT 0)
i think getting checked for intercranial pressure issues is worth doing

if that comes back clear - rather than taking drgs to try to kill the pain - the other angle is to try to reduce the inflammation that is likely to be the driver ( pretty much everything lyme etc al do in the body is via inflammation)

Buhner has some herbs for this
-Kudzu root
-Uncaria Rhynchophylla
-Coral root
-Chinese senega root

there may be others - I'm just going from memory
the first 2 are the ones i have used and they do seemed to have helped my sore head over time
Posted 6/30/2023 8:57 PM (GMT 0)
Thank you for your responses, I do take diamox which does treat Intracranial hypertension, so my doctor dosent feel the need to pursue that route to check on that.

I take nattokinase daily. I haven’t heard of those herbs so that’s something I could look into.
Posted 7/1/2023 12:28 PM (GMT 0)
This therapist has many instructive videos for lymphatic drainage massage. You can check out the videos on her channel.
[url]https://youtu.be/vjhOHQqkf6Y[url]

A word to the wise. If I remember right, you want to unclog your lymph flow from the bottom up, as lymph flows downward. So, your head/neck are the problem areas, but you want to work below that area first.
Posted 7/1/2023 11:01 PM (GMT 0)
Are the headaches on one side or throughout head? And does your neck stiffen when you get them?
Posted 7/5/2023 9:42 PM (GMT 0)

running wild said...
Are the headaches on one side or throughout head? And does your neck stiffen when you get them?

I get them in my temples on both sides, on the top of my head, the back of my head, and sometimes the forehead. No neck stiffness.
Posted 7/5/2023 10:29 PM (GMT 0)
I’m no use to you then. Have had bad migraines for many years and always starts on right side neck, through occipital region, then behind eye and into right forehead.

With test who answered on inflammation, toxins, etc… Wish I could do more to help.
Posted 7/5/2023 10:43 PM (GMT 0)
Headaches can be so tricky, since they can be caused by so many things, and I'm sure you've combed through your diet, ergonomics, hydration habits, supplements, meds, environmental factors, sleep, stress, lifestyle, etc. to figure out what might be triggering your headaches.

I have struggled with debilitating headaches at various points, but my most recent ones have been related to perimenopause. If you're biologically female and between 35 and 55, then hormonal changes (and possibly hormone replacement therapy) are worth considering.

Aside from progesterone for the aforementioned headache cause, I never found any drugs useful. The supplements that helped were ashwagandha, magnesium, B1, and CBD. Topical frankincense, lavender, and peppermint essential oils would take the edge off. The Curable chronic pain app also was helpful.
Posted 7/6/2023 10:55 AM (GMT 0)
Dr J talks about pain management in his patient population in his youtube videos here

https://www.youtube.com/channel/ucoon1xk3dmcrl6idxjhjgbw

i think gabapentin, ketamine and CBD/THC compounds are discussed - but also others
not sure which video - probably mentioned in several of them as its generally part of their stabilisation program that they put all patients through to get them stable before beginning abx treatment for which they use the acronym POEMS - "P" being for Pain
Posted 7/6/2023 7:20 PM (GMT 0)

Garzie said...
Dr J talks about pain management in his patient population in his youtube videos here

https://www.youtube.com/channel/ucoon1xk3dmcrl6idxjhjgbw

i think gabapentin, ketamine and CBD/THC compounds are discussed - but also others
not sure which video - probably mentioned in several of them as its generally part of their stabilisation program that they put all patients through to get them stable before beginning abx treatment for which they use the acronym POEMS - "P" being for Pain

I am a patient at JSC, so i am actively working with him/them to work on this problem, pain is certainly a huge issue
Posted 7/6/2023 7:22 PM (GMT 0)

saraeli said...
Headaches can be so tricky, since they can be caused by so many things, and I'm sure you've combed through your diet, ergonomics, hydration habits, supplements, meds, environmental factors, sleep, stress, lifestyle, etc. to figure out what might be triggering your headaches.

I have struggled with debilitating headaches at various points, but my most recent ones have been related to perimenopause. If you're biologically female and between 35 and 55, then hormonal changes (and possibly hormone replacement therapy) are worth considering.

Aside from progesterone for the aforementioned headache cause, I never found any drugs useful. The supplements that helped were ashwagandha, magnesium, B1, and CBD. Topical frankincense, lavender, and peppermint essential oils would take the edge off. The Curable chronic pain app also was helpful.

Yes, been through lots of things, trying to find something to point the finger at or numerous things. Im biologically male and these headaches really came out during heavy bart and babs treatment so whatever is getting stirred up is fighting back pretty hard even on off treatment weeks. I still have other meds to try and help for the headaches. I do use topical CBD, one of the few things that provides relief.
Posted 7/6/2023 7:24 PM (GMT 0)

bongomongo said...
Bartonella causes vasculitis including brain vasculitis.
This case report says it's uncommon but it is actually quite common.

https://n.neurology.org/content/94/15_Supplement/1002

“A Case of Cerebral Vasculitis Due to Neurobartonellosis”
It's just what bartonella does.

John Aucott’s group at Hopkins medicine have released these findingson “Post Lyme Disease Treatment Syndrome” saying they have found abnormalities in the white and grey matter of the brain.

https://www.hopkinsmedicine.org/news/newsroom/news-releases/johns-hopkins-neuroimaging-study-reveals-functional-and-structural-brain-abnormalities-in-people-with-post-treatment-lyme-disease

“Johns Hopkins Neuroimaging Study Reveals Functional and Structural Brain Abnormalities in People with Post-Treatment Lyme Disease
10/26/2022
Researchers used advanced imaging scans to observe white matter differences in small cohort of Lyme patients.
“these brain scans indicate high activation levels of white matter in the frontal lobes of participants with post-treatment Lyme disease while performing a memory task. Participants without post-treatment Lyme did not show the same white matter activations. Credit: Cherie Marvel, Ph.D., Johns Hopkins Medicine

In a study using specialized imaging techniques, Johns Hopkins Medicine researchers report distinctive changes in the “white matter” and other brain tissue physiology of those with post-treatment Lyme disease, a condition affecting 10% to 20% of the nearly half a million Americans who contract Lyme disease annually”

These findings are consistent with Brain Vasculitis.

https://www.sciencedirect.com/topics/pharmacology-toxicology-and-pharmaceutical-science/brain-vasculitis#:~:text=in%20general%2c%20cerebral%20vasculitis%20is,a%20loss%20of%20neurologic%20function.

“Brain Vasculitis
In general, cerebral vasculitis is defined as inflammation of the wall of blood vessels which leads to luminal obstruction and eventually a loss of neurologic function.”

“Brain imaging (computed tomography (CT) and magnetic resonance imaging (MRI)) is usually performed and in general, MRI is more sensitive than CT (Kuker, 2007a, b; Birnbaum and Hellmann, 2009). While some patients’ scans may be normal, most show changes such as multiple small intraparenchymal (gray or white matter)”

Bartonella upregulates Vascular Endothelial Growth Factor leading to systemic vasculitis.

https://pubmed.ncbi.nlm.nih.gov/11553014/

“Evidence of a leading role for VEGF in Bartonella henselae-induced endothelial cell proliferations”

https://jnnp.bmj.com/content/76/2/296.1

“Our results indicated that increased plasma VEGF could be a useful marker for the diagnosis of vasculitic neuropathy and for monitoring a therapeutic effect.”

That’s just what Bartonella does.

https://parasitesandvectors.biomedcentral.com/articles/10.1186/s13071-016-1547-9

“Vasculitis, cerebral infarction and persistent Bartonella henselae infection in a child”

Interesting info, thank you, gonna have to read more into these. I have had CT and MRI of brain. I am in and out of aggressively treating Bart as well.
Posted 7/13/2023 7:07 PM (GMT 0)
Dear, ltc1225:

While searching for something else, I ran across the following and thought of you:

New England Institute for Neurology & Headache
https://www.neinh.com

From the "Services" link on their website:

"Whether it’s migraine or other head, neck face or jaw pain, concussion, multiple sclerosis, ADHD, emotional disorders, Lyme disease or complex neurological mysteries, we’re here to help you get better. We are able to spend more time with you, and provide services not available at other centers, such as same or next day appointments, house calls, virtual consultations, as well as provider email and cell phone access."

You're already seeing one of the best Lyme doctors around, but maybe bookmark the above link, in case you need additional support or ideas.

Wishing you good luck and good health.

Dude
Posted 7/15/2023 4:02 AM (GMT 0)

The Dude Abides said...
Dear, ltc1225:

While searching for something else, I ran across the following and thought of you:

New England Institute for Neurology & Headache
https://www.neinh.com

From the "Services" link on their website:

"Whether it’s migraine or other head, neck face or jaw pain, concussion, multiple sclerosis, ADHD, emotional disorders, Lyme disease or complex neurological mysteries, we’re here to help you get better. We are able to spend more time with you, and provide services not available at other centers, such as same or next day appointments, house calls, virtual consultations, as well as provider email and cell phone access."

You're already seeing one of the best Lyme doctors around, but maybe bookmark the above link, in case you need additional support or ideas.

Wishing you good luck and good health.

Dude

Thank you for this link. I am seeing a neurologist soon but it’s helpful to have other options
Posted 7/15/2023 2:46 PM (GMT 0)
Hello, this is my first post. I learned a lot from this forum just by searching and reading smile

For me is helping:
Lithium orotate 5mg
Corydalis if the pain is too much
Ice hat
Homeopatic: iris versicolor and cocculus
Gingko biloba together with cayenne drinking in water
Wim hof breathing
Binaural beats to calm my brain or asmr
Gua sha or cupping
Earthing
My boyfriend can have headaches from too much histamine and also too much glutamate in his brain. Some other supplements and herbs are helping him like b6, lemon balm, turmeric, moringa, glutathione ...
Posted 7/15/2023 4:18 PM (GMT 0)
A friend of mine cured her headaches by turning off the Wi-Fi at night.
No downside to trying this for a week
Posted 7/16/2023 7:11 AM (GMT 0)

Annie23 said...
Hello, this is my first post. I learned a lot from this forum just by searching and reading smile

For me is helping:
Lithium orotate 5mg
Corydalis if the pain is too much
Ice hat
Homeopatic: iris versicolor and cocculus
Gingko biloba together with cayenne drinking in water
Wim hof breathing
Binaural beats to calm my brain or asmr
Gua sha or cupping
Earthing
My boyfriend can have headaches from too much histamine and also too much glutamate in his brain. Some other supplements and herbs are helping him like b6, lemon balm, turmeric, moringa, glutathione ...

Hi Annie - welcome to the forum.
Good to hear that you have found some relief for the pain.
Pain was the worst symptom I had from Lyme and coinfections.
Posted 7/17/2023 2:43 PM (GMT 0)
If you have been diagnosed with trigeminal neuralgia, have you tried baclofen? I too had severe headaches which eventually lead to hospitalization and a diagnosis of trigeminal from lyme. Baclofen has done the job for me and I feel great now.
Posted 7/17/2023 10:31 PM (GMT 0)

springsjean said...
If you have been diagnosed with trigeminal neuralgia, have you tried baclofen? I too had severe headaches which eventually lead to hospitalization and a diagnosis of trigeminal from lyme. Baclofen has done the job for me and I feel great now.

I’m seeing a neurologist soon and I haven’t heard of that med so will definitely ask them about it, thank you
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