u/im-a-freud

Hi everyone!
While changing some things with this sub I found this great resource for all things NDPH that I added to the resource tab but wanted to post it here in case anyone wasn’t aware of our resource tab. The website is NDPH.org.
- It breaks down what NDPH is, what can cause it, different avenues for self care that may help reduce symptoms or over all wellbeing while you trial treatments (a foundation if you will)
- supplements with their effectiveness, doses and how they work
- nutrition
- upper cervical exercises with instructions for improving posture and strengthening
- mind-nervous system exercises
- questions to ask your specialist or doctor

I wanted to put this out there along with the medication list from NDPHaware in case anyone needed the resources but wasn’t sure where to look. I hope this can help guide people in the direction of relief and hope. Should I find anymore websites that I think are beneficial I will add them below :)

NDPH research publications

Since June I’ve had sudden fatigue that gets worse with activities (I’m being tested for Lyme). Simply going to the store or walking my dog makes me need to nap and do nothing the rest of the day, doing anything for a whole day or any prolonged activity like playing 30 min of squash (this was only once since June and I was severely fatigued for 3 days but have played in the past and was only tired for the day I played) or walking around outside for a few hours wipes me out for 5 days I cannot do anything else but sleep. I spend most days in bed or walking my dog for 15 minutes but I still want to do the summer things I love doing with my dad bc it brings me joy and helps my mood but will likely flare up fatigue. I have POTS but my HR is well managed and I stay very well hydrated. How do I deal with the flares and make them less severe or long lasting? I’ve not been diagnosed with anything fatigue or ME wise bc all my blood work is coming back normal and bc that’s normal my doctor assumed there’s nothing wrong. I’m only being tested for Lyme bc I wanted to rule it out. I have no help from my doctors

Some background context: I’ve had abnormal fat distribution in my lower body since at least 2018 (when I was 18). I’ve lost and gained weight over the years I’ve been 140lbs at my heaviest and 90lbs at my lowest (bad med withdrawal) and now I’m 113lbs. I cut out dairy which made me lose 20lbs it reduced my inflammation and then lost another 15lbs treating my hormones and no matter how much I’ve lost it has no effect of my leg fat. I’ve had zero help from doctors near me I went in 2022 to get the heaviness and puffiness looked at and had a venous ultrasound done which showed 3 incompetent veins in my calves and was told wear compression socks (got measured) and was never seen by them again and no further investigation was done. I struggle wearing them bc they are so uncomfortable and bc my legs are sore they made them feel heavier so I don’t wear them (I know I should). I mentioned the leg pain and heaviness to my new family doctor and all he said was “heaviness is vague” and that was it no further looking into it. He wants me to see a rheumatologist for suspected fibro and said they could help with the leg issue but I don’t think that’s the person to see for it. I do have the fat pockets when I pinch my legs but I forgot to show him that and I don’t get the vibe I’ll get anywhere if I do bc he did make sure to emphasize that I’m 113lbs and that my BMI is 19 “low but not concerning yet” so I feel like if I mention that there’s fat on my legs I’ll get brushed off. (Mods I can’t read the wiki nothing shows up but I am trying to find a doctor for this in my area since it’s my job apparently to find specialist to have my doctor refer me to)

Long story short. My mom suggested I do a lymphatic drainage massage to see if that helps bc there’s a place in town. What’s everyone’s experience with it and how often should it be done? Does it give you any improvement in heaviness and pain?

For background: 7 years ago I woke up one day and my eyes hurt my head when I moved them giving me a headache so I got my eyes check and they were fine. That headache has not stopped at all since. The only time I do not feel pain is when I’m unconscious and it does not respond to treatment I’ve tried and failed 33 meds for it. I now have chronic migraines also don’t respond to meds. Since at least highschool (10 years ago, 15yo) I’ve always had some level of body pain it was mild and not constant I didn’t think anything of it bc I thought that was normal. Over the years my head pain has gotten worse and within the last year the body pain had increased to mild and moderate pain occasionally (I would say flares in my legs and arms but most of my pain was just in my back). I’ve always had a mild level of fatigue that cannot be explained by blood work and deficiencies. Now within the last few months most noticeable since June I’m extremely fatigued going out and doing anything wipes me out I have to spend most of the day napping, anything too much will drain me for 5 days and no matter how much I sleep it doesn’t fix it. My body pain (joints always a deep ache, shooting stabbing nerve pain in my arms and legs, and muscle pain) has become a constant moderate pain that doesn’t respond to meds. I have heart palpitations and lightheadedness (diagnosed as POTS). I have neck stiffness but my ROM is fine, eye floaters but my eye are fine other than sucky eyesight. I’ve had countless blood tests to check for deficiencies and all that and it always comes back clear and I have no idea what else could be causing this. My mom seems to think it could be Lyme. I’ve never seen a tick on me or had any bullseye none of that just all these random symptoms.

Does Lyme sound like a possibility and should I ask my new GP to test for it? I’ve only seen him once so I’m not sure how to suggest things to him if he’ll be okay with me doing that

For background: 7 years ago I woke up one day and my eyes hurt my head when I moved them giving me a headache so I got my eyes check and they were fine. That headache has not stopped at all since. The only time I do not feel pain is when I’m unconscious and it does not respond to treatment I’ve tried and failed 33 meds for it. I now have chronic migraines also don’t respond to meds. Since at least highschool (10 years ago, 15yo) I’ve always had some level of body pain it was mild and not constant I didn’t think anything of it bc I thought that was normal. Over the years my head pain has gotten worse and within the last year the body pain had increased to mild and moderate pain occasionally (I would say flares in my legs and arms but most of my pain was just in my back). I’ve always had a mild level of fatigue that cannot be explained by blood work and deficiencies. Now within the last few months most noticeable since June I’m extremely fatigued going out and doing anything wipes me out I have to spend most of the day napping, anything too much will drain me for 5 days and no matter how much I sleep it doesn’t fix it. My body pain (joints always a deep ache, shooting stabbing nerve pain in my arms and legs, and muscle pain) has become a constant moderate pain that doesn’t respond to meds. I have heart palpitations and lightheadedness (diagnosed as POTS). I have neck stiffness but my ROM is fine, eye floaters but my eye are fine other than sucky eyesight. I’ve had countless blood tests to check for deficiencies and all that and it always comes back clear and I have no idea what else could be causing this. My mom seems to think it could be Lyme. I’ve never seen a tick on me or had any bullseye none of that just all these random symptoms.

Does Lyme sound like a possibility and should I ask my new GP to test for it? I’ve only seen him once so I’m not sure how to suggest things to him if he’ll be okay with me doing that

Not officially diagnosed as no doctor in 10 years has thought to look into why I’m always in pain but my new pcp said my issues sound like fibromyalgia so hopefully I can get somewhere with him. For context I have NDPH (24/7 headache and migraines 15 days a month, they do not respond to any medication or treatment nothing touches my pain). They’re unmedicated bc my specialist is out of options and her suggestion was to see a pain specialist who could only do nerve blocks which caused me such severe bone on bone pain that took 6 weeks to go away and he couldn’t do anything else. Pain meds (OTC, toradol, Tylenol 2, muscle relaxers, roll ons, etc) do nothing for me. I do my PT exercises and stretches every night. I sleep on my stomach it’s the only way I can fall asleep and I don’t sleep with a pillow bc any put my neck at an awkward angle. I can’t sleep on my slide it’s uncomfortable on my shoulder. I cannot sleep comfortably I wake up constantly bc my body aches. I’m having to nap during the day bc I sleep like shit. I so badly just wanna sleep without pain. I’m hoping to ask my doctor on Monday for either meds to help the pain or sleep meds

I’ve had mild body pain for at least 15 years (since I was around 15, mild not super noticeable) and in the last year or so it’s gotten moderate daily and severe some days. My joints, muscles and nerves all hurt always. No one has ever looked into why and I’ve never been sent to a specialist. I have a constant headache and migraines that are completely refractory to all treatments (I think essentially leaving the pain untreated is what’s made the body pain worse). I cannot take any meds for my headaches and migraines because nothing works. OTC meds do nothing for my body pain, I have oral toradol given to me at a walk in clinic that does nothing for me and neither does Tylenol 2. I met with my new PCP last week and he seemed baffled that no one has looked into my pain for 15 years and said it sounds like fibromyalgia and asked if I’ve seen a rheumatologist (I said no one has ever thought to send me to one) so I’m hoping when I see him next Monday he can figure something out bc I’m in pain and can’t do anything about it. I don’t respond to meds and if codeine doesn’t work that doesn’t make me hopeful. I don’t know what his next steps will be and referral take ages in Canada so I don’t know how long I’ll be stuck in pain before I can see someone or start a med. I can’t work I’m on disability I’m only 25 I spend most days in bed bc I’m so fatigued and in pain. I’ve done 900mg gabapentin in the past for my headaches and it had no effect on my pain and took me from 5 migraines to 15-20 so that’s not an option.
Magnesium does nothing for me. I’ve done nerve blocks and trigger point injections for my back and neck pain before and it made things so severely worse it took 6 weeks for the pain of it to go away so I will never ever do that again. I sleep like shit I toss and turn bc I’m uncomfortable and in pain (I sleep on my stomach with no pillow as this causes my neck the least amount of pain, I can’t sleep on my side bc I have hypermobility in my shoulders it’s uncomfortable after a while to sleep that way). I feel so lost and have had zero help from doctors for 15 years

Any advice for someone not diagnosed? How can I manage and deal with the constant joint and nerve pain? I can’t function like this I’ve gone downhill in the last few months

I’ve had chronic pain for at least 10 years and it’s just gotten worse over the last few years I’ve never seen any specialist for it bc no one thought to look into why I’m in pain. I now have a new PCP and when I described my pain he said it sounds like fibromyalgia so I’m hoping I can get a referral to a rheumatologist to manage this bc I can’t take anything for the pain right now (OTC meds don’t work, toradol does nothing and Tylenol 2 does nothing). I wanted to be able to visually track the pain locations to be able to understand it better. I did download chronic insights but you have to pay to get the map part and I’m looking for a free app.

Does anyone know of any free apps on the AppStore for iPhone that give you a 360° of the body (I’m a visual person i wanna be able to see the pain areas on a body) and you can add where your pain is maybe in different colors and be able to log it each day?

Update: PainTrek does exactly this

I’ve always had fatigue after activities such as walking for a long time, playing a 20 minute game of squash (I don’t do this often maybe once a month and I make my dad do all the hard work and running lol), going out shopping, etc but it used to just last that day and I’d need to nap, now I’m wiped out for 2-4 days after I’m exhausted I have to spend all day sleeping, my body feels like it’s weighed down with lead, my joints and muscles hurt, my headaches get worse, etc (I can’t pin point when it happened but maybe 2025 or late 2024 if I had to guess). I have no idea what’s going on, I haven’t seen a family doctor in over a year bc I didn’t have one but I see my new one on Wednesday I’m just worried they won’t be helpful bc that seems to be a pattern with doctors where I am. My cardiologist has given up on helping my lightheadedness so I can’t do anything without feeling like I’m gonna pass out, my iron is likely less than 15 I haven’t had it checked in 4 years maybe that’s a factor idk. My headache specialist has cannot help me bc I don’t respond to medication so my headaches and migraines just continue to get worse with zero relief.

How do I go about discussing this with my doctor and how can I manage this fatigue? What are some things that help you all? I can’t work bc anything physical is dangerous for me to do with my lightheadedness and I can’t have a desk job bc of my headaches. I’m tired of being tired I never used to be like this

Hi everyone the more I read about PEM the more I believe that’s what I’m dealing with but the sub for that only has 8 people and is never used so I hope asking here is appropriate and okay to do so. A bit of backstory I apologize this may be long I’ll break it into sections.

I have had NDPH for 7 years meaning I have had a constant 24/7 headache/pressure in my head without any pain free days and have developed multiple other types of migraines and headaches over the years bc my pain doesn’t respond to any medication, I’ve tried 33 meds total and nothing touches my pain (either they did nothing, made the pain worse or side effects were too severe to continue). I’m now out of treatment options for my headaches and migraines.

I have POTS my heart rate is well managed and doesn’t go over 125 most days my max is 110-115 however my beta blocker (the only med that’s helped my HR) lowers my already low BP. I’ve tried midodrine to raise my BP and it helped but worsened my headaches so it had to be stopped then I tried Fludrocortisone to help me retain fluids and it did nothing for me so I stopped it. My cardiologist for whatever reason has no other options he can give me so I’ve been left to be extremely lightheaded and hardly able to do any activity without feeling like shit and sodium doesn’t help.

I’m hoping to get my iron tested this week bc it’s been 4 years and last time it was 23 and it was never tested before I was diagnosed with POTS. I take a therapeutic dose (150mg) but it hardly does anything I’m also celiac which makes absorbing iron difficult.

I’m on disability and currently not working bc I live in a small town and there’s not a lot of options I’m able to do since desk work is a trigger for my head and anything physical is too difficult and hazardous with my lightheadedness and fatigue.

I’m not sure if it’s related to my low iron or something else (I haven’t seen a PCP in a year bc I didn’t have one) but I’m extremely fatigued like I can’t go to the grocery store without coming home and needing to nap the whole day, I can’t play a 20 minute game of squash without needing to sleep the rest of that day and the following 2-3 days afterwards and feeling like my body is full of lead and all my bones joints and muscles hurt, I can’t walk around outside for 3 hours without coming home and needing to sleep and then being unable to do anything for 2-3 days afterwards bc I’m so tired and just need to sleep. My body hurts more the following days (suspected fibromyalgia), my headaches get worse, my body feels heavy like I can’t move, my brain feels so foggy, I feel depressed, I can’t focus on anything I just have to sleep. It never used to be like this. I’d be able to do all that and would just be tired that day. I don’t know where to go from here but it’s severely affecting my ability to function and do anything when I have to spend all my days sleeping I can’t do this.

I meet my new family doctor on Wednesday, I’ll mention the severe fatigue but is there anything that would be helpful to mention to them to pursue what the cause is or a diagnosis? Any suggestions? I have no idea how to deal with feeling this exhausted and drained. All my specialists (headache and cardiology) have essentially given up helping me since they can’t offer me any meds so I’m left on my own to figure this out to try and get the proper support I need from my new doctor

11 rounds of Botox, only the first 8 were effective. The first 8 were done anywhere between 3-6 months apart and were the only thing to ever give me relief (yes I know timeframe this is wrong, I wasn’t told it needed to be done every 3 months. Last effective round was Feb 2024), the last were done every 10-12 weeks and did not give me any benefit like they had in the past. From what I can remember (this was a year ago) the 3 rounds did paralyze my forehead movement but didn’t affect my headaches at all.

I assumed this was an antibody issue but from my understanding (which is little) if it was antibody related my forehead wouldn’t be paralyzed by it. What else could explain why it stopped working because this was never explained to me by my doctors

I had 11 rounds total of Botox and only the first 8 were effective. It was the only thing that’s ever touched my NDPH and chronic migraines since I’m completely unresponsive to medication and am out of options for treatment. The last 3 rounds of Botox (all were 10 weeks apart) did absolutely nothing for me like it had in the previous 8 rounds (last effective round was Feb 2024). I was misled by the doctor doing them and wasn’t told to come in every 3 months only when it started to wear off or my intensity would start increasing which was every 5-7 months which is why I think it stopped working bc I was going so long between rounds. Now I’m out of treatment options no medication touches my pain and it is 24/7 and a 6-7 every day. I haven’t been able to try any other types of Botox since my last 3 rounds of Botox (last round was July 2025) because I aged out of my parents insurance and wouldn’t be able to pay for them out of pocket. Now I’m on disability and might be able to try other kinds, specifically Xeomin now that I have insurance through them.

If anyone has had success on Botox and had it stop working, have you had success with switching to Xeomin? I’m at a loss of what else to do because I’m out of options and have zero help from my specialist who is likely to drop me next month since she has nothing else to offer me. I’d love to hear your experiences

25F, 5’5”, 112lbs, only taking Slynd continuous and bisoprolol.

I need some guidance on if this could be an aura and if I should see an optometrist asap. I’m currently out of province and move back home in 4 days where I’ll be able to go make any appointments with my doctors and optometrists if needed. I’d rather not have to go while here bc my disability benefits won’t cover it. I’ve never had any sort of vision issues (other than my vision being shit and having glasses). Yesterday I was washing my dishes and I had this semi translucent blue orb flash in my left eye, not covering my full vision just a small orb kinda like when you look at a light on accident and you can see a colorful shape of the light when you blink (if that makes sense). It didn’t last long like less than a minute of this blue orb in my vision . I then went upstairs sat down to eat and it was back again for about a minute and that was the last time it happened that day. Today I was in class doing a practical I stepped outside to use the equipment and came back in and again my left eye in the top left corner of my vision felt blurry but not blurry and had a yellow orb kinda like when your eyes are so dry and your vision blurs but it was an orb again that made it look blurry. I rubbed at my eye bc I was like wtf is going on it was less than half of my eye that had this yellow translucent orb and it went away within a few minutes. I can’t describe it but my left eye just feels off, I can see fine out of it, it just feels off I don’t know how to explain it. I have NDPH and chronic migraines that are completely unresponsive to meds and am unmedicated for them bc I’m out of options but I’ve never had anything like this with my eyes. I have a repeat MRI booked for September and am on a cancellation list for an earlier appointment. Is this eye orb thing whatever it is worth going to an optometrist about asap instead of waiting til I fly back home later this week? Is this something that’s concerning even if it’s short lived and has only happened 3 times? Does this sound like a migraine aura I’ve never had one.

I’m celiac so no gluten at all so my options are limited, I’ve recently learned gf oats are a migraine trigger which are in almost everything that’s gluten free foods so my options are almost non existent for gf foods. I’m dairy free so again options are limited and I’ve recently learned I’m extremely sensitive to pea protein which is in almost anything vegan or plant based making shopping a nightmare bc everything I pick up has something I can’t eat it’s so overwhelming I want to cry every time I go shopping. Not to mention Keppra has made eating impossible since April and my stomach is painful with everything I eat I can barely eat 2 meals a day I’ll get 4 bites into a meal and my stomach will hurt. I hate food I hate triggers I’m so over this I’ve failed my last medication option nothing touches my pain at all. I feel so helpless I’m tired of my non stop pain. Please don’t ask if I’ve tried XYZ bc the answer is likely yes I’m not looking for suggestions just need to vent

I’m posting this here because any of my posts on Keppra in the migraine sub never get any interaction so I’m posting it in a sub where there is more likelihood of people who have been on it. I started Keppra on April 1st for my NDPH and migraines (which have been unresponsive to all 33 meds I have tried) and have been on my max dose of 1000mg since April 23rd and my side effects are really affecting me and not improving. I have POTS so my HR is normally managed and doesn’t go over 120 rarely would go over 110 and now it’s getting to 130-140 daily even without much effort it’s likely my beta blocker isn’t doing anything, I have little appetite almost everything I eat disagrees with my stomach within 5 minutes of eating I don’t want to put anything in my body with my iffy it is, I’m so tired I nap all day I just feel awful so I’m having to leave a message for my headache specialist telling them I want off and how to do so safely (they did say I can just stop taking it which I will not be doing without clear tapering instructions). My doctors have never told me about any withdrawal side effects and I’ve had some bad reactions in the past that nearly made me take my life (topamax I’m talking about you). I haven’t been on Keppra for too long so I’m not sure if there will be any discontinuation symptoms but want to get an idea of what could happen so it’s not traumatizing like topamax was. I understand everyone reacts to things differently I just want to get an idea of what I might be getting myself into.

If anyone has tapered off Keppra what was it like, any symptoms?

I’ve been on Keppra since April 1st increased the dose once a week and now I’m at the full dose of 1000mg and have been on this for 2-3 weeks and have noticed since getting up to the full dose my stomach is almost constantly upset it’s 50/50 if what I eat will (TMI) pass through in less than 10 minutes which is causing me a lot of anxiety bc I have a restrictions for what I can eat and nothing sounds appetizing especially if it’ll upset my stomach. I can hardly eat breakfast I find this is when the stomach problems are worst especially if I eat. I can hardly finish meals bc my stomach will start getting upset or the food becomes unpleasant mid meal. I have POTS so I have heart rate issues to being with but it’s always been well controlled with meds never going over 120 most days my max was 110-115 and since being on Keppra daily just casually walking my max is 140 and easily getting to 120 doing barely anything and it fucking sucks and is so tiring I cannot stand how I feel my med for my heart rate feels like a sugar pill now. I really don’t wanna give up on Keppra yet because it’s my last option before the injectables which I do not want to have to go on bc of an adverse long term reaction I had to Aimovig but Keppra is making me feel awful.

Has anyone else had either stomach issues, appetite issues, or heart rate (tachycardia) issues on Keppra?