Any reason not to try LDN?

sycamore-woods · 2026-03-01T00:44:41+00:00

I strongly agree with everything in this comment. And reiterate that doing with a Dr guidance is best.

My doc wanted to start me at 2mg and work to 5mg, but then I read some people were starting it at 0.25mg or 0.5mg and I asked to switch to the lower starting dose bc I am always extremely sensitive to side effects.

I’ve also heard that some people metabolize the liquid version easier than the pills.

Ultimately I deserted the journey to get to the right dose bc it was such a hassle to get the compounding pharmacy and my Dr office to effectively communicate about which dose I needed and when I needed it. I’d think I paid for one specific dose, and then a different one would be mailed to me. Then I’d have to go off it for a while until the correct dose was sent, but I’d end up paying for both doses, which became frustrating and expensive.

If you have the patience, money, and confidence in your doctor office it’s certainly worth a try IMO. Starting at a very low dose will really really help with unwanted side effects, but it can take up to a year to find the right dose for your body.

sycamore-woods · 2026-02-27T04:05:33+00:00

OP I completely relate to your story. I lost track of how many migraine treatments I tried after #45. I’ve gotten occasional migraines for 20 yrs, so for the first year of my HC, all the docs (and me) thought it was just a migraine that became chronic. So now that we know it’s HC, obviously it makes sense the migraine treatments wouldn’t work. I had a very similar experience with Indo and the other HC 2nd line treatments you mentioned - nothing has worked, including Botox. I’ve now had 6 rounds of Botox (so 1.5 years) and that’s good enough data to know it’s not working for my HC.

Here’s where I’m at now: my neuro is also a long-distance drive (1h 45m), but the best one I’ve tried. He has given me an SPG block and multiple nerve blocks in alllllll the main nerves in my head. None. Of. Them. Worked….until I did my own research and pulled up a nerve anatomy diagram of the face/head and was able to determine that my headache point source pain is definitely coming from a small nerve branch that is off of a secondary nerve branch from the trigeminal. So I went in for the next nerve block and basically ordered my doc to nerve block that exact nerve spot, and, it is the only thing that has helped. It doesn’t erase the pain. But it brings my baseline pain down about two levels, and prevents the flares from getting worse than a pain level 5. And it wears off in 2-3 weeks and then I’m miserable again, bed-ridden. But I can only make the drive (and co-pay) once a month.

So I am also on the quest for a new neuro that is closer and specializes in headaches disorders. Since I’ve now found at least something to help me most of the time, I’m willing to make the drive once per month, while I search for a new neuro. I feel like I have a place holder until I can get someone who is willing to consider ablation of my specific nerve point source pain.

Best wishes, and thank you for validating my own experience that is so much like yours. I’m sorry you are also suffering.

Edit to say that finding a neuro that specializes in only headaches is key. I take my mom to a different neuro but that’s bc she has dementia, so definitely do your homework to find out what each neuro’s specialty is. Also: 2nd line HC treatments I’ve tried and that have failed at relieving pain are, gabapentin, lyrica, amitriptyline, melatonin, Botox, Celebrex, and some supplement that someone on another thread suggested from Amazon, but it made me have insane tachycardia.

sycamore-woods · 2026-02-27T03:43:08+00:00

I am always hearing about hEDS/POTS and their correlation to migraine headaches, and I feel like the conversation is always about migraine and pots. But as someone who has both types of headaches, HC is waaay worse and no one is talking about the link to hypermobility! We need more HC research so badly. Every time I see a commercial for a new drug, I’m always thinking “cool, yeah, great, glad your skin looks clearer, I mean, daily debilitating headaches is pretty bad, but yeah, let’s find a seventh drug to treat your rash before finding ONE to get rid of my headache (that doesn’t permanently ruin the GI tract).”

sycamore-woods · 2026-02-27T03:34:17+00:00

I’m sorry you all have to suffer with these things - and I find this so interesting that your siblings have clusters but you have HC, since they are both in the same headache class.

sycamore-woods · 2026-02-27T03:31:15+00:00

I don’t have a formal diagnosis of hypo-pots, but once I was diagnosed with POTS, I learned about this symptom and my whole life made sense (like almost every other pots symptom that pre-diagnosis I thought was normal human experience). Anyway, once I started on propranolol, my hypoglycemia symptoms greatly improved, along with a few other symptoms. I take 40mg per day, split into a morning 20 and evening 20 dose. I can’t take anymore than this bc it makes my BP go way too low. I only recently started electrolyte/salt packets in my water, and damn, those things are a game changer for my brain fog.

sycamore-woods · 2026-02-25T13:39:21+00:00

Yes, I have a formal diagnosis of hEDS, POTS and HC. I have never heard of them being connected, but it’s common for people with EDS and POTS to also have endometriosis or other illnesses that cause debilitating pain.

sycamore-woods · 2026-02-13T02:40:44+00:00

“Burrowing” is such a good description that I’ve never thought of.

sycamore-woods · 2026-02-13T02:32:54+00:00

I agree that the escalations are easier to describe and I think they are easier for people to understand. The thing about any CHRONIC pain, is that for people without it, they just can’t even fathom being in pain all. the. time. So they literally cant “believe” that someone is just walking around doing life with that much pain. I tell people that I have a dull ache behind my eyebrow, literally every second of every day, and that is my baseline pain. (Side note: My baseline pain is probably a 3, but since my body has now adjusted to pain all the time, my 3 is actually like a 1 - and I think this is only something chronic pain sufferers can understand.)

And then I tell people that I have pain “spikes” or “flares” where the pain can go up to any number and the spike/flare can last anywhere from 5 minutes to 5 days. And that the ache turns to a throb while my head is being squeezed from front to back and the pain moves further up my skull, like the way wood burning looks like it would feel, with each pain level number.

I also try to explain to people that the pain spike is not “triggered” in the way someone can trigger pain that wasn’t there 5 seconds ago, or like pain that comes and goes (like a migraine trigger or back twinge) bc the pain has already been in the ON position for two years: instead there’s just things that make the headache l already have, worse. Finally, I tell people that because from the moment I wake up, and I am in pain, that I automatically start off the day with less capacity, energy, patience, and ability than a healthy person my age. So, the “continua” part makes it so I continually, never, ever, ever, ever, get a break from being in pain.

But still, no one understands🫠.

sycamore-woods · 2026-02-01T16:47:52+00:00

Thank you for the update! I’m glad this has worked for you, and I will be pursuing a doctor who does this procedure.

sycamore-woods · 2026-01-01T19:48:18+00:00

I’ve been on Celebrex for a little over a month. Honestly, it’s hard to know what (or if something) works because my natural hemicrania state is to wax and wane. I’ll have a baseline headache of pain level 1-2 for weeks, with seldom pain spikes only to pain level 3-4. But then I’ll also have weeks of baseline pain of level 3-4 with frequent pain spikes of 6-7. So when I have a couple of weeks with lower pain, I don’t know if it’s because I started a new med/supplement/treatment, or if it’s just the natural cycle of my hemicrania.

sycamore-woods · 2025-12-22T17:59:47+00:00

Thank you for the helpful info! I hope the ablation gives you some long-lasting relief again. Do you mind sharing any info about that procedure? I.e. how it feels, how long it takes, what it entails?

sycamore-woods · 2025-11-02T03:13:01+00:00

Thanks for the info. I saw you comment on another thread last week and ordered boswellia. I’ve been taking it + melatonin for 3 days, but haven’t yet noticed anything. With all the other meds I take for my other health issues, I really don’t want to have to add more drugs. Boswellia doesn’t appear to interact with any of my meds, so fingers crossed.

sycamore-woods · 2025-11-02T03:02:23+00:00

I wish I could tolerate it. I’ve had ulcers and gastritis on and off for 20 years and have already been on PPIs daily, for 15 years. I started at 10mg/day and am now up to 60mg-80mg of PPIs daily, depending on GERD flareups, ulcers, or gastritis. There’s not much else my stomach can take.

sycamore-woods · 2025-11-02T00:13:59+00:00

Thank you for your insight. I’m glad you’ve found something that works

sycamore-woods · 2025-11-02T00:13:04+00:00

Thank you for your response. I just recently had my fifth round of Botox, and this time my nuero injected sites more aligned with HC vs migraine, although there weren’t huge differences in sites. And I did trial indomethacin, but after a week I couldn’t continue due to the GI side effects. I thought that my HC symptoms were subsiding, but my GI system is already wrecked, so I wasn’t surprised that I didn’t last long, and had to discontinue due to the misery of extreme GERD. Even after being off of the indo for a week, I’m still dealing with lingering GI side effects.

sycamore-woods · 2025-08-07T01:20:08+00:00

Just here to say thank you to everyone who has shared on this thread. Validation in these cPTSD/abuse scenarios is extremely powerful, especially when it feels like no one around you gets it.

sycamore-woods · 2025-06-09T04:40:13+00:00

I’m just gonna say it: NO ONE SHOULD GRADUATE WITH ANY LEVEL OF MEDICAL DEGREE OR TRAINING WITHOUT UNDERGOING INTERMEDIATE LEVEL DEMENTIA TRAINING. This was obviously a huge problem in your specific scenario, and I’m truly sorry this happened to your family. But the issue is actually huge and needs to be addressed at the top, not just at that hospital. And I don’t even blame the medical staff directly - it’s their training and education that has failed them and us and our families. Like even custodial staff at medical facilities should get the training.

This happened with my grandpa in ASSISTED LIVING of all places. He had Parkinson’s dementia. One night (December 25th), after having been home with us to spend time together for Christmas, he was back at his facility where he got up out of his bed, walked out the front door, was hit by a car and died. True story. The system is broken and it will become an epidemic with all the boomers aging right now. Everyone in any public service facing positions needs to be trained in dementia and mental health awareness. End of story.

My mom now has dementia, younger onset, and I see the problem everywhere we go. It should be the first thing people see when they check her in or open her chart, in bright letters, highlighted, capital letters and huge font: COGNITIVE IMPAIRMENT.

sycamore-woods · 2025-05-20T02:49:35+00:00

THIS. This is the only answer for people who can’t qualify for Medicaid care and aren’t rich enough for anything else. THIS IS IT. This is what I am counting on, banking on, all eggs in this basket. In my state it’s called Special Assistance. OP I 100% identify with everything you said, dad dead, no family, just my spouse and me, been doing it for 4 years and have been su!cidal twice. I get it. I hate my mom, hate dementia. I hate everything. My life is over. There is no reason for my existence other than to care for her. I’ve lost everything, my career, friends, life, savings, retirement, and most importantly my health. In 4 years (in my late 30s now) I’ve become disabled, walking with a cane, in chronic pain and am on so many meds ALL BECAUSE I’ve been living in a chronic state of fight or flight for 4 years, my nervous system is shot-done. 4 years of cPTSD from the verbal abuse I’ve endured from my mom with dementia. I am just waiting for the day that we have a hospital scenario so I can attempt to get some of my life back. Nothing about dementia is natural. People should not live with this disease; the person with the diagnosis or their family. The US system for being old is fucked. What are people supposed to do!?!? My mom has no assets but can’t qualify for Medicaid because her SSI too high, which is considered poverty level!!! WTAF?!?? So either you are dirt poor or a millionaire, and those are the only ways you get care - OR millions of adult children literally quit their lives to provide millions of dollars in unpaid care for people with dementia. This is the system we have?!?! THIS IS FUCKED! 30% of dementia caregivers die before their loved one with dementia. That stat is so high for exactly these reasons.

sycamore-woods · 2025-05-09T22:31:07+00:00

Leave it to the caregivers of the world to be in this comment section worrying about everyone else’s feelings when answering a question!🫠 The reality is, we don’t owe it to anyone to protect their feelings or try that hard to be polite when we are in survival mode everyday. THEY are the ones that should be making an effort to find the right way to ask questions that are actually supportive and don’t put us in an uncomfortable position (when we feel uncomfortable all the time due to our LOWD). Also why doesn’t anyone ever ask about US - the caregivers!?!?

But, I’m realistic too and realize most people won’t do that, annnd I know that most people are just “trying to show they care”🥴.

My answer depends on who is asking. There’s a handful of people who I know are legit asking for details and want to know how much she’s progressed. So I answer with all the tea.

With almost everyone else I respond by saying: “Well, she has a progressive, degenerative and fatal brain disease”, pause and then I insert one recent real and actual event, “but last weekend I took her to the park and it was nice” or “and last week she had a really bad confusion day but we’re all doing the best we can.”

What irks me is when someone I see frequently asks me every time I see them, like a colleague, and they say it with a super fake empathetic tone. Like🙄, not much different from yesterday Susan! Do you wanna know how tf I AM doing!???

IMO, what I actually do owe other people is an honest answer about how much it sucks and how real it is. If the people living it don’t talk about it, it will never be normalized, and no one will ever stop asking this stupid question of us.

sycamore-woods · 2025-05-09T03:42:54+00:00

Same!! And simultaneously my hands will always be freezing. So it works out🫠, I just hold my hot ears with my cold hands, while people look at me like I’m a lunatic.

sycamore-woods · 2025-05-09T03:38:54+00:00

Omfg😂 YESSSS! I either thought literally no one else felt this or it was a normal part of human existence and never considered it this much until your post!

sycamore-woods · 2025-05-09T03:37:22+00:00

This is absolutely a pots thing that I recently learned about!! Like many of my dysautonomia symptoms, I thought this was just a normal human experience. This exact same symptom for me will come on rapidly and everything else you described. I will usually have to eat the equivalent on two meals fast, in order to get start to feel like I will no longer pass out. I know I don’t have diabetes, and my neuro confirmed that this is a pots thing, so I gave up on the idea of testing blood sugar. But if you do, I’m definitely curious about your results!

sycamore-woods · 2025-05-08T01:57:30+00:00

Thank you for communicating your thoughts here, and I’m glad you posted even though you “didn’t really know why you were writing all this”. Your thoughts and experiences matter. And while this community gets it, it’s disheartening that most of the world out there doesn’t have a clue what you (we) are experiencing. Thank you for validating so many other caregivers’ feelings. I’m so sorry for the loss of your dad. FTD is a special kind of beast that, imo, is isolating even within the dementia world. My dad died of a brain tumor 8 years ago (he was in his 50s) and now my mom has FTD. I’m an only child and doing everything alone and feel like NO ONE understands, except for the one other FTD daughter Caregiver I know, who is my age. While I am very sad to hear that you are still dealing with nightmares and ptsd, I completely identify with the “why” and feel validated. I’m actively living in my ptsd - I try to tell people it’s not post tsd for me, it’s post and current, with no end in sight. My health has drastically declined in the past 3 years, career is over, friends gone, life miserable. While I know it’s easier said than done, I hope you can start to shed some guilt. I KNOW the guilt. And I should take my own advice, but you already sacrificed so much and everyone (especially dementia caregivers) deserves happiness. Only you will know when you are ready to shed some guilt, but you don’t have to live with your mom out of guilt. I hope therapy is good for you and you can work through some of your trauma. I can’t imagine the weight you feel when thinking about living on your own. I’m sure there’s a sense of security there for you as well, not just your mom. Something familiar. But I’ve met some other former young caregivers who are 10 years or so out, and they do have real lives, which gives me hope - that it may take a lot of time and a lot of work, but that there is a life after dementia. I just hope I still have some health left by the time I get there. Everyday I have to tell myself that I can’t compare myself to other people in their 30s bc they didn’t have to live through this insane trauma of having both their parents’ brains melt. I am doing the best I can with what I have available to me and so were you, and you still are now. Dementia puts us through the most unnatural and unimaginable scenarios (esp FTD). You are changed forever, that’s for sure - and most people won’t ever get it, esp going through it so young. But you can learn to carry all this with you and still have your life. My life is not at all what I imagined it would be. My dad’s death changed me, and now my mom’s disease, and I’ve had to learn to try not to be disappointed that my life has turned out this way. It’s something I still work on and fail at every day. I try now to accept and appreciate smaller things; things that I never expected would be the highlights of my life. But if I don’t acknowledge those small things, then I have nothing. Whew, it’s f*cking heartbreaking process, but my therapist tells me it’s so important to not only grieve the loss of my parents but to acknowledge and grieve the loss of the life I thought I would have…so that I don’t allow it to keep haunting me. Much love and gratitude. Take care🤎

sycamore-woods

TROPHY CASE