valentina franco no...but I just discovered that I believe for me it is TMS(tension myiosites syndrome). You cand find Nichole Sachs on instagram and youtube with hudge info about tms. The good thing is we can be pain free but first we have to know what tms is and what to do. So I had some relief the last 2 weeks but I am in control and in progresa for no pain❤️ hope this helps
It’s so nice to hear someone else talk about the EXACT thing that has been happening to me for the last 6 years. When you said that “it’s not a migraine, migraines go away” i felt that so much. It’s so hard to explain that to other people. With my headache, it’s constant, but the pain varies. Some days are better than others. But it is true how you said that the pain can be bearable and then not be in a split second. I had to drop out of school because my attendance was so bad because i was stuck at home in pain. I don’t take anything at the moment for the pain, nothing works. The only time i do take something is when the pain is unbearable. And the medication that i take at that time, makes me sleep. Because the only time i don’t feel the pain, is when I’m asleep.
I hate to hear that someone else experiences this. I’ve had others reach out too and it makes me feel so much less alone but I wouldn’t wish this on my worst enemy. You aren’t alone in your experience, struggles and frustrations because I definitely feel what you said here too. I’ll be doing an update video soon (hopefully once I get my butt out of bed lol).
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
Cindy Jacobs I’m so sorry ! I’m in the same boat, 6 years with a bad headache every single day nonstop 24/7. I’ll pray for you as well as all others suffering like us. We will get better!!! Stay strong
I’ve had this same problem for about 4 years now. But just because I “seem fine” I’m not being taken seriously, I’ve just gotten used to living with the pain but I can’t take it
Jessica Harrison that’s literally the same as me. I’ve become good at putting up a front to everyone else because i don’t want to be a pain or a burden on everyone around me. Everyone tends to forget now and again that I’m in a lot of pain.
Watching your video made not want to kill myself, I suffer from the same, 2 years now. No answers, no treatment, no relief for 1 second no hope, nothing. You made me feel not so lonely. I'm in California too. I would like to connect with you.
i cant explain how much i needed to come across this video. i have felt so alone not only in general but also in the medical world. i have had an extreme headache that hasn’t gone away for 8 years and no one understands the pain and grief that comes with it. sending you all of my love and endless amounts of strength.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
I was recently diagnosed with ndph and when you were talking about just making it up I felt that. I have struggled with mental illness for a few years and When they don’t find anything i feel crazy.I have had the same headache now for 5 months and it really impacts my school and living life and being a normal 15 year old I just want this to end! Your video has made me feel less alone and like I can do this!
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
9 years ago I began having occasional headaches. it then became a daily headache, which some days turns into a full blown migraine and ends with an ER visit. I feel your pain.
NDPH for 15 years. Insurance is such a hassle. I get this. So odd you had a seizure. I just woke up with it one day and it never went away. No rhyme or reason. Botox didn't work for me either. The lidocaine block didn't work for me. Right now I'm on Emgality. No change yet. You poor thing. I'm so sorry you're dealing with other issues as well. Prayers for you. Your positive take on it will get you far.
I'm with you girl...tomorrow is the six month mark on the last day I was without a headache for more than 1-2 hrs. While they did find that I have a pituitary tumor, it supposedly has nothing to do with my headaches. I have seen a PCP, ENT, audiologist, endocrinologist, neurologist, and neurosurgeon and have failed MANY medications. Mine is a chronic tension headache in my forehead and the pressure changes throughout the day then migraines hit. Oh and now the chronic tinnitus, fatigue, and lightheadedness. I'm afraid this will cause neuro/cognitive effects in my future. The mental health is another topic on its own! Good luck to you!
I really understand what you are feeling, I am in exactly same situation for 5 weeks in row and in the first time in my life I have a health issue I am a really fit person that follows a really healthy diet, all my medical exams come outstanding (blood works and CT Scans) the doctors say it’s tension headache and give 1 medicine that I not take because I never take medicines so I try to control the daily headache with Moringa powder, CBD oil and Ginko Biloba, one of the thing that I really think that this situation come from it was when a lady lost the control of her car and smash my side of my Mercedez car on the motorway but that it was in 2016 and I really didn’t get nothing no health problems related to that accident even a single scratch. But now 2019 5 weeks ago come this out from nowhere, a headache is always there a the pain go from 2 out of 10 to 6 out of 10, I don’t have aura with the headache but some movement sometimes make it worse, I was a gym and running person and I was force to stop, I will do my investigations and try to research more to see were thins come from and I really understand you when the Doctors think that we are creating this like a fiction bad movie. All of the best luck for you and others that are in this situation.
Mine just started 9/30/23 and now nonstop. Had migraines for decades and finally, finally got relief about 14 months ago due to Vyepti. Placed on high dose prednisone helped but pain came back after doses tapered. This sucks big time. People keep asking me if this is a migraine and I tell them NO!!! People who have migraines know exactly what their migraines feel like. This is not a migraine,. I did research on this and they are doing a lot of research to find out what is causing this.
have had a headache for 27 days. Had a CT scan, everything was fine with that, other than a small cyst on my left maxillary sinus. Went to an ENT, he said that wouldn’t cause this headache...he cleared me and suggested a neurologist. (Before going to the ENT, my regular doctor gave me prednisone and a z pack bc he thought the cyst might have been the cause of the headache. Of course that didn’t help) Skip ahead to last Friday. Went to the neurologist and he just prescribed amitriptyline. I am not taking it. I took it once and couldn’t get out of bed for a day and a half after. I was completely knocked out! I should add, my general doc tried a new migraine medication too, just to rule that out and that didn’t work. I have no idea what to do. I am absolutely miserable. Do you have any suggestions? I am just feeling awful, I can completely relate to this video.
Hi there! We do have a discord where people with NDPH congregate and discuss what’s helped, what hasn’t, our experiences and any information we find. Here is the link discord.gg/JZHwDz
Hi, I was amazed at how much I related to your story. I can relate to feeling like the doctors aren't taking my pain seriously especially at my age (17) I'v struggled with chronic persistent migraines, I guess you'd call them, since I was 9. Though I never had a any seizure. I'v been on so many medications and I to struggle with mental illness. I wanted to make this comment to thank you for making this video. I dont feel so alone in this anymore.
I am so sorry for your experience. Chronic migraines are crippling. It never ceases to amaze me how doctors get into their profession, their job being to help people, and the majority seem to do anything but do that. It’s so frustrating. Good, compassionate doctors are out there and they can really change everything. Keep on trying and keep on taking care of your mental health. Thank you for leaving this comment. It really made my day. I feel less alone now too.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
Can you describe your perma-headache? Im in the early stages (4 months) and am terrified this is the rest of my life. I feel you when you say "I dont have migraines". This is not a migraine. This is a dull, aching, nauseating heavy headache. 100% in the back of my head/neck at all times. Often in the sides of my head and forehead. A "good day" is when its not in my forehead for 15 minutes. I dont want to be another one of these people who go from specialist to specialist, burning through money, and never figuring out what the problem is so we can effectively treat it. There is NOTHING positive about this. However it does put life in perspective. I cant believe the things I use to worry about. Unbelievably petty and unimportant BS that I now regret spending so much time and energy on
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
I have had NPDH since 1997 after getting a staph infection that got in to my brain since I have a Vp shunt for hydrocephalus . After I recovered from the staph infection and following surgery I became aware that I had a headache and it wouldn’t go away. The first doctors treated me like it was all in my head. I did go to a specialist and he tested the pressure inside my brain and it said it was normal but he said he had seen a few cases by female teenagers that after trauma developed constant headaches and they did eventually go away when they were in their 40-50 years old when hormones go down. He suggested I go to a pain specialist and that was the first thing that helped.
I hate that you have had to deal with this for so long. But it is comforting to hear you so perfectly put into words exactly how I have felt about so many parts of dealing with this in the almost 7 years that I have had it. It has completely flipped my families world upside down and we have had to accommodate to a “new normal”. It just sucks because I am the most unreliable person ever because I never know whether it will be a day that the headache is too bad and causes me to be bed bound in a dark room, or if the headache will only be a minor “baseline” headache where I am actually able to push through it and be functional. Thank you for sharing your story and I am excited to meet others on you discord!
It’s 1 AM and I’m sitting in bed crying! I think I’ve been dealing with NDPH for eight years… 10 if you don’t count the eight months I was headache free. I can’t remember the date when the headaches started again after that eight months, but I remember exactly what I was doing and ever since I’ve just been praying for answers.
I have this. I also i have mental health issues have had them since i was a child. I have had this condition since i was 5 years old. They couldnt find anything for me either ive been on so much medication. I am 22 now when i was pregnant with my daughter now 2 it was worse. The only thing that helps me is cannabis. People do tend to look down at you when you use this. I never smoke it around my daughter only when she goes to sleep and i get up before she gets up to smoke one. I use cbd oil aswell which helps a little bit. Its been a life changer. I didnt remember what it felt like when i didnt have this pain n when i smoked my first joint i cried my eyes out coz i wasnt in pain for the first time in years. You should try this coz it really helped me. I dont use it to get high i only smoke a little one i use it as an escape n use it to make sure i can be the best mother i can be. Your not alone. I dont take medication coz it only made me feel worse xx
Don’t feel guilty or judged about using medical marijuana and cannabis products to treat your pain and symptoms even though I know it’s hard not to. You don’t have to explain yourself here I totally know how it is. You aren’t judged here. I actually live in a state where medical marijuana has been legalized for a while and now it’s completely decriminalized. It took a long time for me to take the dive and try it because I’d always been so scared to take anything mind altering because of my past. I do use it on and off because I do notice if I use it for too long it effects my mental health. I’ve recently been using again because of a doctor, pharmacy, health insurance mishap which left me with my usual health problems worsened while dealing withdrawal from tramodol I was taking 3 times a day. I’ve decided not to take the tramodol anymore even though I did notice it did help cut down the pain mildly because of how addictive it is and the hell I went through recently with that experience. My pain has been worse recently daily because of this but I have been using cannabis and cbd recently. I do smoke indica occasionally when the pain is really bad. I eat an edible (around 10mg indica 2mg cbd) every night to go to sleep and that is so helpful for sleep for me. I’m on a lot of medication at night, but I still need extra at night or else I won’t sleep. I try not to take any during the day if I can help it so I can try to take care of some responsibilities because I know I’ll be useless if I don’t but the pain relief is worth it. I know there is still so much stigma about cannabis use for medical conditions. Just know that we all just do the best we can do. There is no judgement here. I hope you and yours are doing well. I’m so sorry you have this, you aren’t alone. We are all trying to sort this out together and finding ways to cope.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
I had a Thunderclap headache on Jan 5th 2023 and have had daily headaches since. Finally a video that covers what I have been dealing with since that day. I was thinking I was the only one on the planet going through this nightmare. 😔
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
Thanks for uploading this. I've had ndph since I was 11, I'm now 27 and I'm only now getting taken seriously as I have a new dr. I also have chronic migraine on top of this plus a few other chronic illnesses. So far I haven't found anything that helps. Hope things improve for you!
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
I’ve had ndph since I was 12 and since then I’ve been back and forward to hospital and I’ve had lots of operation for it that hasn’t worked. It’s nice to hear that’s you’re not alone❤️
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
I've been having a chronic daily headache for 18 months now (from 15 y.o), which might be NDPH. I can do some of the things I had been able to do before, but enthusiasm is a complete 0. All my thoughts feel clouded. I feel it won't be long until school becomes too much to handle with it there. If only I could sleep forever...
I am 4 years in with my headache I have tried way to many drugs to even keep up with. I see a fantastic headache specialist so I was lucky to not have the same many doctors experience. I also have never has insurance so I understand the pain of the US Healthcare system. I finally found nasal ketamine will greatly reduce the pain but nothing has ever taken the pain away completely. Good luck to anyone with NDPH just know that you are not alone and try to stay positive.
Hey Guys I forget to tell you Who is suffering from this type of headaches they must have to stop smoking and drinking because when I drink or smoke then after that more headaches and nausea please
Oh my goodness I never thought I would see someone else with this problem. 5.5 years now. Even Mayo Clinic doesn’t really know what to do. I hope you find a cure!!!
Hi! I feel for you! I also suffer from very frequent headaches. I was first treated from migraine, which didnt help. Hedache frequency was sometimes increasing, simetimes decreased.. But often when it started it lasted for a week or so... This month I went to ER because I had headache many days in a row and painkillers and triptanes gave only short-term relief.. So after ER I was hospitalised, spent 12 days in hospital and checked thoroughly. They gave me opioid painkillers there, they also helped just for a while. Finally, the neurologist in a hospital came to the conclusion that it's not migraine, and after all possible serious reasons was ruled out, I was diagnosed with Hemicrania Continua. There is a medication which is helping for this rare type headache - Indomethacin. I just started treatment with this medicine, it gives some relief, but my doctor said I need to take it for a week or two before I get full effect. Also I had gone through spinal puncture, and now experience spinal headache in addition to my regular headache, but it should go away soon... I'm writing this comment because maybe your doctor need to see if you maybe have a Hemicrania Continua too? It is headache that is very similar to migraine (one sided, combined with light and sound sensitivity, worse when moving, nausea etc.), but unlike migrsine it lasts for many days and sometimes it's constant.. Maybe you need to look into it.
I’ve only been on the team since 2018 but I feel for all of you. No doctors nor neurologists have been able to explain why or treat it though I have tried many things, I too was told it was NPDH which my doc said was a blanket term for these strange long term issues.
10/4/17 is the date my ndph started. Mine started after a brief illness. I have been through so many meds, diets and even had sinus surgery to try to fix what is going on. You wont be surprised to hear nothing worked, i even have had it worsen lately getting a sinus style migraine in my nose, sinus and upper teeth on top of my daily forehead pain. Thankfully i live near the Cleveland clinic and a neurologist there diagnosed me and is knowledgeable about the limited studies done on this disease and we have a game plan to try to fight this. I hope one day something can be done for this condition.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
I have had my headache since 2009. I call it atypical trigeminal neuralgia. My left ear aches and aches plus I have severe debilitating tinnitus in my left ear.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
Shit! And just heard you mention you’ve decreased coordination and depth perception! That is me! This all was in the first year, then that improved, but now it’s back due to the turbinectomy I just had (And as per my recent post)- I hope it fades as my nose heals. For me, I believe my nasal mucosa is highly sensitized and is the source of the afferent signals- after responding to anesthesia.
I’m 4 years in and can’t drive due to migrainous features. I’ve been through it all (like you), I even flew to sth Africa for surgery (didn’t work) However, an ENT there soaked gauze with anesthetic and stuffed it up my nose= goodbye pain! I had contact points surgically removed and I’m actually worse atm 9 days post op. I’m seeking someone to isolate the nerves in my nose responsible and I want them permanently destroyed.
Doctors are useless sometimes... I have something that also never goes away. Not a headache but it's a similar story. It's a drugged feeling with a visual aspect to it that is terrible. I had MRI's EEG's a PET/CT scan and a ton of blood tests and all of it came back negative. The only thing that showed up was slight elevated protein from my spinal tap. But they said there wasn't anything they could do with it. I had this problem for 20 years so far, but it gets triggered by certain things (anxiety, viruses) every several years that go by. It has come into my life and gotten worse 3 times. I keep digging for answers but there doesn't seem to be any. Unfortunately there is only so much that a person can take before they kill themselves. It's pretty scary actually. It doesn't really fluctuate in intensity either, it just gets worse many years after the onset and stays like that. It makes no sense at all. I would do anything to get rid of this horrible thing.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
It's great to find others who suffer from the same condition I do. I am hanging on but it's so hard got my headache July 23rd 2016. Had dickhead doctors. I'm on lyrica because of my fibromyalgia but it helps my headache , and I take a opioid medication. Both help but no luck on a cure yet . Hope you wake up one day without a headache omg what a day that would be for people like us !
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
Like you I have had many procedures, even brain surgery, but it didn't help. I think we have a nerve compression that they can't find or see on a scan.
i have been experiencing daily headaches and i never had a history of headaches. i'm going to see a neurologist next week it started in May. but i think it's my neck causing this ummm it feels like a dull persistent headache sometimes a sharpness in the back of the head. i did a MRI without contrast it showed sinus cysts and a 3 mm perivascular space vs a partial volume averaging artifact. idk if that's what causing it i also have dry eyes/mouth. i took some ibuprofen and reglan i believe those drugs cause the dryness. it's been hell for me i never had all these neurological problems before.
I was an x-ray tech when I got sick and now I'm on total disability. I have depression from this because I am so limited in what I can do. May I ask what meds you take that help? I will try anything.
I’ve never been diagnosed with epilepsy per say and unfortunately the EEG tests I’ve taken didn’t “catch” any seizure activity and I think that’s ultimately what they use to categorize a seizure. I recently had a seizure a month ago, my fiancé did call EMS not wanting to take any chances this time. Even though EMS and hospital staff witnessed the other symptoms of the next 2 seizures I had, they didn’t tell us what classifications of seizure it was. Like, whether is was a grand mal or something like that. I did become rigid, contorted, and my fiancé kind of described it like a “fish out of water” almost. My headache (and whole body) hurt worse for almost a week but thankfully my pain level went back to its average and still varies day to day.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
I relate to every word you say, its depressing but im glad im not the only one. Especially with shitty doctors giving migraine meds for what is clearly not migraine lol. You wait several months to go see your doctor and he just gives you more meds that wont work and tells you to come back in several more months. The only thing ive tried that helps is opioids lol. the only meds i havent tried are beta blockers and i havent tried botox. And i literally had the thought "is this all in my head" too lol. Im only halfway through the video but yeah
What medication do you take that helps? Ive had this horrible disease going on 8 years now. Ive tried so many things its insane. I have struggled to find people who will treat me AND believe the pain that im in. It's so difficult to explain to people this migraine/headache is 24/7.
Honestly I’ve tried so many medications at this point and unfortunately for my situation I haven’t found one that’s provided me with a significant amount of relief. Right now I take gabapentin 4 times a day, topomax, lamictal and ultram for the headache. Ultram has by far been the most successful “pain killer” and I find it dulls the pain down without wearing off super harshly and making my pain worse afterwards. Since it is classified as an opioid doctors are hesitant to prescribe it especially for chronic pain now because of how addictive it can be but I know the struggle. I’ve been waiting for 11 months for a new neurologist now. I’ve heard this quite a few times and although I’m glad to feel validated and not crazy that doctors aren’t taking me seriously it’s really concerning that almost every person I’ve talked to who has had something almost identical struggles with doctors not taking us seriously. It’s frustrating.
@@thea13 I now take norco. I did take tramadol for quite some time but i found it to be too habit forming for me and beyond that, its very hard to stop taking without issues. I have to argue and fight every single month to ensure I have what I need and I am sick of it. I dont know if i should be happy or sad that I know an auto immune disease has probably caused a lot of issues for me too. I am sick of doctors. I have had doctors tell me to my face, that its all in my head, that I need to just accept that im not getting better, I have even had them tell me im making everything up just for attention. The sad thing is with these types of migraines people dont get how depressed we can become. I told them at one point id rather just be dead than have to suffer day in and day out AND have to worry about what people say and what they think of me. I cant count how many special/important things I have missed in fear of a flare up. It takes way too long to even be seen by a neurologist and when I do finally get in they have such a God complex they always insist i retry things that I already know wont work for me. I was "triggered" by the Ebstein Barr virus! I was told that most of the time with these headaches you get them after being sick... I too have had a spinal tap. I cant get botox because my migraine is every single day. Tried the nerve block thing too. It was horrible! I have noticed that I dont seem to have triggers. Nothing really makes me worse and not much makes me better. I went to the Cleveland Clinic Imatch program. It was useless. Doctors were rude and condescending. They all pretty much told me to just deal with the pain because it's not going away. When i started getting anxiety really badly i took Xanax. Eventually, i tried ativan and its my preferred anxiety medication because i am terrified of getting hooked on things. The crazy thing is we are the least likely to actually abuse medications but we are often treated worse than a person who actually is just seeking to get high.
Canabeera Kingdom I suffer from eye allergy since I was 7 and I’m 23 now. Since I started college I’ve suffered from chronic headache and it worsen by strong smells such as perfumes, dyes, dust and sometimes sun and lights. I don’t know where to go? Immunologist or neurologist? What do you think? I’m currently visit a psychiatrist.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late. Here is the link if you are interested: discord.gg/rdP6ea8
I am a 24 yo with NDPH for a year and half now- how are you doing? i am planning on taking a medical leave from grad school now and it feels terrrrrible
I’ve never gotten any numbness or tingling but I do get restless feet especially at night so I think that’s more to do with possible medication side effects.
I’m not a doctor and I still have the same fear but everyone who’s experienced this (and even for really long periods of time) has been cleared of tumor.
@@thea13 hi, I'm still hoping to get an MRI scan after I see the neurologist. I started a healthy diet (almost no sugar and lots of veggies), lots of sleep and exercising and it cured my headaches! :) I suggest you do the same.
I can't believe this is real!!! I have one year of daily headache, every hour,minute, second. Only when I sleep I don't feel it.
Hi i have 6 moths with it, are you better yet?
valentina franco no...but I just discovered that I believe for me it is TMS(tension myiosites syndrome). You cand find Nichole Sachs on instagram and youtube with hudge info about tms. The good thing is we can be pain free but first we have to know what tms is and what to do. So I had some relief the last 2 weeks but I am in control and in progresa for no pain❤️ hope this helps
I'm sorry for people that suffer from this.
Were you able to get rid of them denise
@@valentinafranco1569 not really. Some days is really bad, some not sa baf but still with the headache
It’s so nice to hear someone else talk about the EXACT thing that has been happening to me for the last 6 years.
When you said that “it’s not a migraine, migraines go away” i felt that so much. It’s so hard to explain that to other people.
With my headache, it’s constant, but the pain varies. Some days are better than others. But it is true how you said that the pain can be bearable and then not be in a split second. I had to drop out of school because my attendance was so bad because i was stuck at home in pain. I don’t take anything at the moment for the pain, nothing works. The only time i do take something is when the pain is unbearable. And the medication that i take at that time, makes me sleep. Because the only time i don’t feel the pain, is when I’m asleep.
I hate to hear that someone else experiences this. I’ve had others reach out too and it makes me feel so much less alone but I wouldn’t wish this on my worst enemy. You aren’t alone in your experience, struggles and frustrations because I definitely feel what you said here too. I’ll be doing an update video soon (hopefully once I get my butt out of bed lol).
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
Cindy Jacobs I’m so sorry ! I’m in the same boat, 6 years with a bad headache every single day nonstop 24/7. I’ll pray for you as well as all others suffering like us. We will get better!!! Stay strong
I’ve had this same problem for about 4 years now. But just because I “seem fine” I’m not being taken seriously, I’ve just gotten used to living with the pain but I can’t take it
Jessica Harrison that’s literally the same as me. I’ve become good at putting up a front to everyone else because i don’t want to be a pain or a burden on everyone around me. Everyone tends to forget now and again that I’m in a lot of pain.
Watching your video made not want to kill myself, I suffer from the same, 2 years now. No answers, no treatment, no relief for 1 second no hope, nothing. You made me feel not so lonely. I'm in California too. I would like to connect with you.
i cant explain how much i needed to come across this video. i have felt so alone not only in general but also in the medical world. i have had an extreme headache that hasn’t gone away for 8 years and no one understands the pain and grief that comes with it. sending you all of my love and endless amounts of strength.
I m also struggling from this chronic tention daily headache from last 10 years..,....
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
me too
I was recently diagnosed with ndph and when you were talking about just making it up I felt that. I have struggled with mental illness for a few years and When they don’t find anything i feel crazy.I have had the same headache now for 5 months and it really impacts my school and living life and being a normal 15 year old I just want this to end! Your video has made me feel less alone and like I can do this!
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
9 years ago I began having occasional headaches. it then became a daily headache, which some days turns into a full blown migraine and ends with an ER visit. I feel your pain.
Nothing at all like the headache this poor girl has.
NDPH for 15 years. Insurance is such a hassle. I get this. So odd you had a seizure. I just woke up with it one day and it never went away. No rhyme or reason. Botox didn't work for me either. The lidocaine block didn't work for me. Right now I'm on Emgality. No change yet. You poor thing. I'm so sorry you're dealing with other issues as well. Prayers for you. Your positive take on it will get you far.
How are you now? Did it start with neck problems (soreness/stiffness) for you too?
I'm with you girl...tomorrow is the six month mark on the last day I was without a headache for more than 1-2 hrs. While they did find that I have a pituitary tumor, it supposedly has nothing to do with my headaches. I have seen a PCP, ENT, audiologist, endocrinologist, neurologist, and neurosurgeon and have failed MANY medications. Mine is a chronic tension headache in my forehead and the pressure changes throughout the day then migraines hit. Oh and now the chronic tinnitus, fatigue, and lightheadedness. I'm afraid this will cause neuro/cognitive effects in my future. The mental health is another topic on its own! Good luck to you!
How are you now?
@@connorwogen8106 Still have the headache.
I really understand what you are feeling, I am in exactly same situation for 5 weeks in row and in the first time in my life I have a health issue I am a really fit person that follows a really healthy diet, all my medical exams come outstanding (blood works and CT Scans) the doctors say it’s tension headache and give 1 medicine that I not take because I never take medicines so I try to control the daily headache with Moringa powder, CBD oil and Ginko Biloba, one of the thing that I really think that this situation come from it was when a lady lost the control of her car and smash my side of my Mercedez car on the motorway but that it was in 2016 and I really didn’t get nothing no health problems related to that accident even a single scratch.
But now 2019 5 weeks ago come this out from nowhere, a headache is always there a the pain go from 2 out of 10 to 6 out of 10, I don’t have aura with the headache but some movement sometimes make it worse, I was a gym and running person and I was force to stop, I will do my investigations and try to research more to see were thins come from and I really understand you when the Doctors think that we are creating this like a fiction bad movie.
All of the best luck for you and others that are in this situation.
Are you feeling okay now?
Mine just started 9/30/23 and now nonstop. Had migraines for decades and finally, finally got relief about 14 months ago due to Vyepti. Placed on high dose prednisone helped but pain came back after doses tapered. This sucks big time. People keep asking me if this is a migraine and I tell them NO!!! People who have migraines know exactly what their migraines feel like. This is not a migraine,. I did research on this and they are doing a lot of research to find out what is causing this.
have had a headache for 27 days. Had a CT scan, everything was fine with that, other than a small cyst on my left maxillary sinus. Went to an ENT, he said that wouldn’t cause this headache...he cleared me and suggested a neurologist. (Before going to the ENT, my regular doctor gave me prednisone and a z pack bc he thought the cyst might have been the cause of the headache. Of course that didn’t help)
Skip ahead to last Friday. Went to the neurologist and he just prescribed amitriptyline. I am not taking it. I took it once and couldn’t get out of bed for a day and a half after. I was completely knocked out!
I should add, my general doc tried a new migraine medication too, just to rule that out and that didn’t work.
I have no idea what to do. I am absolutely miserable. Do you have any suggestions? I am just feeling awful, I can completely relate to this video.
Hi there! We do have a discord where people with NDPH congregate and discuss what’s helped, what hasn’t, our experiences and any information we find. Here is the link discord.gg/JZHwDz
@@thea13 u have a new invite 4 this?
Hi, I was amazed at how much I related to your story. I can relate to feeling like the doctors aren't taking my pain seriously especially at my age (17) I'v struggled with chronic persistent migraines, I guess you'd call them, since I was 9. Though I never had a any seizure. I'v been on so many medications and I to struggle with mental illness. I wanted to make this comment to thank you for making this video. I dont feel so alone in this anymore.
I am so sorry for your experience. Chronic migraines are crippling. It never ceases to amaze me how doctors get into their profession, their job being to help people, and the majority seem to do anything but do that. It’s so frustrating. Good, compassionate doctors are out there and they can really change everything. Keep on trying and keep on taking care of your mental health. Thank you for leaving this comment. It really made my day. I feel less alone now too.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
Can you describe your perma-headache?
Im in the early stages (4 months) and am terrified this is the rest of my life. I feel you when you say "I dont have migraines". This is not a migraine. This is a dull, aching, nauseating heavy headache. 100% in the back of my head/neck at all times. Often in the sides of my head and forehead. A "good day" is when its not in my forehead for 15 minutes.
I dont want to be another one of these people who go from specialist to specialist, burning through money, and never figuring out what the problem is so we can effectively treat it.
There is NOTHING positive about this. However it does put life in perspective. I cant believe the things I use to worry about. Unbelievably petty and unimportant BS that I now regret spending so much time and energy on
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
I have had NPDH since 1997 after getting a staph infection that got in to my brain since I have a Vp shunt for hydrocephalus . After I recovered from the staph infection and following surgery I became aware that I had a headache and it wouldn’t go away. The first doctors treated me like it was all in my head. I did go to a specialist and he tested the pressure inside my brain and it said it was normal but he said he had seen a few cases by female teenagers that after trauma developed constant headaches and they did eventually go away when they were in their 40-50 years old when hormones go down. He suggested I go to a pain specialist and that was the first thing that helped.
I hate that you have had to deal with this for so long. But it is comforting to hear you so perfectly put into words exactly how I have felt about so many parts of dealing with this in the almost 7 years that I have had it. It has completely flipped my families world upside down and we have had to accommodate to a “new normal”. It just sucks because I am the most unreliable person ever because I never know whether it will be a day that the headache is too bad and causes me to be bed bound in a dark room, or if the headache will only be a minor “baseline” headache where I am actually able to push through it and be functional. Thank you for sharing your story and I am excited to meet others on you discord!
It’s 1 AM and I’m sitting in bed crying! I think I’ve been dealing with NDPH for eight years… 10 if you don’t count the eight months I was headache free. I can’t remember the date when the headaches started again after that eight months, but I remember exactly what I was doing and ever since I’ve just been praying for answers.
I have this. I also i have mental health issues have had them since i was a child. I have had this condition since i was 5 years old. They couldnt find anything for me either ive been on so much medication. I am 22 now when i was pregnant with my daughter now 2 it was worse. The only thing that helps me is cannabis. People do tend to look down at you when you use this. I never smoke it around my daughter only when she goes to sleep and i get up before she gets up to smoke one. I use cbd oil aswell which helps a little bit. Its been a life changer. I didnt remember what it felt like when i didnt have this pain n when i smoked my first joint i cried my eyes out coz i wasnt in pain for the first time in years. You should try this coz it really helped me. I dont use it to get high i only smoke a little one i use it as an escape n use it to make sure i can be the best mother i can be. Your not alone. I dont take medication coz it only made me feel worse xx
Don’t feel guilty or judged about using medical marijuana and cannabis products to treat your pain and symptoms even though I know it’s hard not to. You don’t have to explain yourself here I totally know how it is. You aren’t judged here. I actually live in a state where medical marijuana has been legalized for a while and now it’s completely decriminalized. It took a long time for me to take the dive and try it because I’d always been so scared to take anything mind altering because of my past. I do use it on and off because I do notice if I use it for too long it effects my mental health. I’ve recently been using again because of a doctor, pharmacy, health insurance mishap which left me with my usual health problems worsened while dealing withdrawal from tramodol I was taking 3 times a day. I’ve decided not to take the tramodol anymore even though I did notice it did help cut down the pain mildly because of how addictive it is and the hell I went through recently with that experience. My pain has been worse recently daily because of this but I have been using cannabis and cbd recently. I do smoke indica occasionally when the pain is really bad. I eat an edible (around 10mg indica 2mg cbd) every night to go to sleep and that is so helpful for sleep for me. I’m on a lot of medication at night, but I still need extra at night or else I won’t sleep. I try not to take any during the day if I can help it so I can try to take care of some responsibilities because I know I’ll be useless if I don’t but the pain relief is worth it. I know there is still so much stigma about cannabis use for medical conditions. Just know that we all just do the best we can do. There is no judgement here. I hope you and yours are doing well. I’m so sorry you have this, you aren’t alone. We are all trying to sort this out together and finding ways to cope.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
I had a Thunderclap headache on Jan 5th 2023 and have had daily headaches since. Finally a video that covers what I have been dealing with since that day. I was thinking I was the only one on the planet going through this nightmare. 😔
I HAVE THIS OH MY GOD IVE BEEN LOOKING FOR SOMEONE ELSE WHO HAS EXPERIENCED THIS AND OH MY GOD IM ONLY TWO MINTUES IN
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
Thanks for uploading this. I've had ndph since I was 11, I'm now 27 and I'm only now getting taken seriously as I have a new dr. I also have chronic migraine on top of this plus a few other chronic illnesses. So far I haven't found anything that helps. Hope things improve for you!
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
I’ve had ndph since I was 12 and since then I’ve been back and forward to hospital and I’ve had lots of operation for it that hasn’t worked. It’s nice to hear that’s you’re not alone❤️
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
I've been having a chronic daily headache for 18 months now (from 15 y.o), which might be NDPH. I can do some of the things I had been able to do before, but enthusiasm is a complete 0. All my thoughts feel clouded. I feel it won't be long until school becomes too much to handle with it there. If only I could sleep forever...
I am 4 years in with my headache I have tried way to many drugs to even keep up with. I see a fantastic headache specialist so I was lucky to not have the same many doctors experience. I also have never has insurance so I understand the pain of the US Healthcare system. I finally found nasal ketamine will greatly reduce the pain but nothing has ever taken the pain away completely. Good luck to anyone with NDPH just know that you are not alone and try to stay positive.
i fear a tumor as well but a brain tumor accompanies other symptoms it's just been the headaches no speech, sleep problems, nausea etc.
Hey Guys I forget to tell you
Who is suffering from this type of headaches they must have to stop smoking and drinking because when I drink or smoke then after that more headaches and nausea please
Oh my goodness I never thought I would see someone else with this problem. 5.5 years now. Even Mayo Clinic doesn’t really know what to do. I hope you find a cure!!!
How you were treated in Mayo clinic, please?
Hi! I feel for you! I also suffer from very frequent headaches. I was first treated from migraine, which didnt help. Hedache frequency was sometimes increasing, simetimes decreased.. But often when it started it lasted for a week or so... This month I went to ER because I had headache many days in a row and painkillers and triptanes gave only short-term relief.. So after ER I was hospitalised, spent 12 days in hospital and checked thoroughly. They gave me opioid painkillers there, they also helped just for a while. Finally, the neurologist in a hospital came to the conclusion that it's not migraine, and after all possible serious reasons was ruled out, I was diagnosed with Hemicrania Continua. There is a medication which is helping for this rare type headache - Indomethacin. I just started treatment with this medicine, it gives some relief, but my doctor said I need to take it for a week or two before I get full effect. Also I had gone through spinal puncture, and now experience spinal headache in addition to my regular headache, but it should go away soon...
I'm writing this comment because maybe your doctor need to see if you maybe have a Hemicrania Continua too? It is headache that is very similar to migraine (one sided, combined with light and sound sensitivity, worse when moving, nausea etc.), but unlike migrsine it lasts for many days and sometimes it's constant.. Maybe you need to look into it.
Thank you for sharing that with me! I will definitly bring it up with my doctor.
I’ve only been on the team since 2018 but I feel for all of you. No doctors nor neurologists have been able to explain why or treat it though I have tried many things, I too was told it was NPDH which my doc said was a blanket term for these strange long term issues.
20 years for me. Hard struggle. We will Keep on fighting. ✊
I relate to this so much, the headache pain, the doctors, and I studied anthropology as well :) I hope you are well
10/4/17 is the date my ndph started. Mine started after a brief illness. I have been through so many meds, diets and even had sinus surgery to try to fix what is going on. You wont be surprised to hear nothing worked, i even have had it worsen lately getting a sinus style migraine in my nose, sinus and upper teeth on top of my daily forehead pain. Thankfully i live near the Cleveland clinic and a neurologist there diagnosed me and is knowledgeable about the limited studies done on this disease and we have a game plan to try to fight this. I hope one day something can be done for this condition.
I’m sorry to hear that you are going through this as well. Please keep us updated with your progress :)
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
How you getting on treating it?
I have had my headache since 2009. I call it atypical trigeminal neuralgia. My left ear aches and aches plus I have severe debilitating tinnitus in my left ear.
I’ve had this for 2 years now.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
Canabeera Kingdom thank you so much x
How are you now
@@maddywilliams9040 how you getting on with treating your headache, any improvement?
Shit! And just heard you mention you’ve decreased coordination and depth perception! That is me! This all was in the first year, then that improved, but now it’s back due to the turbinectomy I just had (And as per my recent post)- I hope it fades as my nose heals.
For me, I believe my nasal mucosa is highly sensitized and is the source of the afferent signals- after responding to anesthesia.
I’m 4 years in and can’t drive due to migrainous features. I’ve been through it all (like you), I even flew to sth Africa for surgery (didn’t work) However, an ENT there soaked gauze with anesthetic and stuffed it up my nose= goodbye pain! I had contact points surgically removed and I’m actually worse atm 9 days post op. I’m seeking someone to isolate the nerves in my nose responsible and I want them permanently destroyed.
Doctors are useless sometimes... I have something that also never goes away. Not a headache but it's a similar story. It's a drugged feeling with a visual aspect to it that is terrible. I had MRI's EEG's a PET/CT scan and a ton of blood tests and all of it came back negative. The only thing that showed up was slight elevated protein from my spinal tap. But they said there wasn't anything they could do with it. I had this problem for 20 years so far, but it gets triggered by certain things (anxiety, viruses) every several years that go by. It has come into my life and gotten worse 3 times. I keep digging for answers but there doesn't seem to be any. Unfortunately there is only so much that a person can take before they kill themselves. It's pretty scary actually. It doesn't really fluctuate in intensity either, it just gets worse many years after the onset and stays like that. It makes no sense at all. I would do anything to get rid of this horrible thing.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
I had this for about 2 years but recently the pain intensity has lowered and i feel better. I don't know how this happend tho.
That’s amazing, are you still pain free?
It's great to find others who suffer from the same condition I do. I am hanging on but it's so hard got my headache July 23rd 2016. Had dickhead doctors. I'm on lyrica because of my fibromyalgia but it helps my headache , and I take a opioid medication. Both help but no luck on a cure yet . Hope you wake up one day without a headache omg what a day that would be for people like us !
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
Like you I have had many procedures, even brain surgery, but it didn't help. I think we have a nerve compression that they can't find or see on a scan.
I’ve been having headaches for the long time and I have them everyday and they never go away
I hope everything is ok for you now only just seen this is a few months old xx
i have been experiencing daily headaches and i never had a history of headaches. i'm going to see a neurologist next week it started in May. but i think it's my neck causing this ummm it feels like a dull persistent headache sometimes a sharpness in the back of the head. i did a MRI without contrast it showed sinus cysts and a 3 mm perivascular space vs a partial volume averaging artifact. idk if that's what causing it i also have dry eyes/mouth. i took some ibuprofen and reglan i believe those drugs cause the dryness. it's been hell for me i never had all these neurological problems before.
How are you now? Did the headache go away? What has helped?
Look into tension myosotis syndrome and pain reprocessing theory. Im now cured so ignore at your own risk.
Michael I think I see you on Reddit threads as well possibly I'm curious how long it took you to be cured
Just joined your discord! Wishing you all the best
please tell me it can get better please
I was an x-ray tech when I got sick and now I'm on total disability. I have depression from this because I am so limited in what I can do. May I ask what meds you take that help? I will try anything.
Everything you describe I have too. I never thought I would see another person that suffers like me. You have to apply for disability.
How do you do it did you get help from the dr
I've had headache for past 6 months and it's driving me nuuuuts. When you say seizure do you mean like an epileptic seizure or how is it?
I’ve never been diagnosed with epilepsy per say and unfortunately the EEG tests I’ve taken didn’t “catch” any seizure activity and I think that’s ultimately what they use to categorize a seizure. I recently had a seizure a month ago, my fiancé did call EMS not wanting to take any chances this time. Even though EMS and hospital staff witnessed the other symptoms of the next 2 seizures I had, they didn’t tell us what classifications of seizure it was. Like, whether is was a grand mal or something like that. I did become rigid, contorted, and my fiancé kind of described it like a “fish out of water” almost. My headache (and whole body) hurt worse for almost a week but thankfully my pain level went back to its average and still varies day to day.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
I relate to every word you say, its depressing but im glad im not the only one. Especially with shitty doctors giving migraine meds for what is clearly not migraine lol. You wait several months to go see your doctor and he just gives you more meds that wont work and tells you to come back in several more months. The only thing ive tried that helps is opioids lol. the only meds i havent tried are beta blockers and i havent tried botox. And i literally had the thought "is this all in my head" too lol. Im only halfway through the video but yeah
Have you investigate your spine? Or to go to a specialist who knows about temperomandibular muscle etc.
What medication do you take that helps? Ive had this horrible disease going on 8 years now. Ive tried so many things its insane. I have struggled to find people who will treat me AND believe the pain that im in. It's so difficult to explain to people this migraine/headache is 24/7.
Honestly I’ve tried so many medications at this point and unfortunately for my situation I haven’t found one that’s provided me with a significant amount of relief. Right now I take gabapentin 4 times a day, topomax, lamictal and ultram for the headache. Ultram has by far been the most successful “pain killer” and I find it dulls the pain down without wearing off super harshly and making my pain worse afterwards. Since it is classified as an opioid doctors are hesitant to prescribe it especially for chronic pain now because of how addictive it can be but I know the struggle. I’ve been waiting for 11 months for a new neurologist now. I’ve heard this quite a few times and although I’m glad to feel validated and not crazy that doctors aren’t taking me seriously it’s really concerning that almost every person I’ve talked to who has had something almost identical struggles with doctors not taking us seriously. It’s frustrating.
@@thea13 I now take norco. I did take tramadol for quite some time but i found it to be too habit forming for me and beyond that, its very hard to stop taking without issues. I have to argue and fight every single month to ensure I have what I need and I am sick of it. I dont know if i should be happy or sad that I know an auto immune disease has probably caused a lot of issues for me too. I am sick of doctors. I have had doctors tell me to my face, that its all in my head, that I need to just accept that im not getting better, I have even had them tell me im making everything up just for attention. The sad thing is with these types of migraines people dont get how depressed we can become. I told them at one point id rather just be dead than have to suffer day in and day out AND have to worry about what people say and what they think of me. I cant count how many special/important things I have missed in fear of a flare up. It takes way too long to even be seen by a neurologist and when I do finally get in they have such a God complex they always insist i retry things that I already know wont work for me. I was "triggered" by the Ebstein Barr virus! I was told that most of the time with these headaches you get them after being sick... I too have had a spinal tap. I cant get botox because my migraine is every single day. Tried the nerve block thing too. It was horrible! I have noticed that I dont seem to have triggers. Nothing really makes me worse and not much makes me better. I went to the Cleveland Clinic Imatch program. It was useless. Doctors were rude and condescending. They all pretty much told me to just deal with the pain because it's not going away. When i started getting anxiety really badly i took Xanax. Eventually, i tried ativan and its my preferred anxiety medication because i am terrified of getting hooked on things. The crazy thing is we are the least likely to actually abuse medications but we are often treated worse than a person who actually is just seeking to get high.
Canabeera Kingdom I suffer from eye allergy since I was 7 and I’m 23 now. Since I started college I’ve suffered from chronic headache and it worsen by strong smells such as perfumes, dyes, dust and sometimes sun and lights. I don’t know where to go? Immunologist or neurologist? What do you think? I’m currently visit a psychiatrist.
Hey there, I'm letting everyone know who has commented on this video that I've created a discord server to act as kind of a support group type thing where we can all talk about our symptoms, treatments, frustrations etc. with having this condition because I know how isolating it can be and I also know I am absolute shit at getting back online to read comments as of late.
Here is the link if you are interested: discord.gg/rdP6ea8
I am a 24 yo with NDPH for a year and half now- how are you doing? i am planning on taking a medical leave from grad school now and it feels terrrrrible
I can’t do this anymore
How are you coping? Its been 5 yrs for me and my life is completely upside down now.
@@thegreatancientone207 about 6 years deep now and I just play video games and do whatever else I can to distract
Have you tried LDN?
With your headaches do you also have muscle weakness or numb and tingling in your hands and feet?
I’ve never gotten any numbness or tingling but I do get restless feet especially at night so I think that’s more to do with possible medication side effects.
I hope i dont have a brain tumor.
I’m not a doctor and I still have the same fear but everyone who’s experienced this (and even for really long periods of time) has been cleared of tumor.
@@thea13 hi, I'm still hoping to get an MRI scan after I see the neurologist. I started a healthy diet (almost no sugar and lots of veggies), lots of sleep and exercising and it cured my headaches! :)
I suggest you do the same.
4 years
30 years everyday every second pain
NDPH is hell. No one deserves it.
hey you still around on discord? was trynna contact you!
Hi I’m so sorry! Yes I still have it! I’ll be sure to go back on there today :)
1year old haha xx
You probably already heard this but anything that messes with your serotonin levels such as Proza_c can cause sever headaches.