my chronic illness - new daily persistent headaches
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- čas přidán 2. 04. 2022
- hi everyone, just wanted to talk about my chronic illness story. hopefully this clears up things but please comment below any questions if you have any (or even comment your own chronic illness story) :) I really appreciate every one of you supporting me, so thank you!! if you want to support me further, feel free to check the links below!
Patreon: patreon.com/chronicallyroaming
Email: lovetwice.depop@gmail.com - Jak na to + styl
I’ve been getting chronic headaches for almost 10 years now. The more I sleep the less of a headache I have. I’ve seen neurologists taken a load of medications. CT scan, MRI, spinal tap. I cannot work. I cannot go to school. I’m literally in debilitating pain unless I sleep. So I sleep all the time. Ruins my sleep wake cycle. I’m up at odd hours. It’s a real nightmare. Good luck. Thanks for sharing.
In The name of Allah you are cure now... Please search Psychosomatic sumptoms... 😃
I’m so sorry for you!
How are you doing now?
I’ve been dealing with NDPH for about 2 years. Mine also set in after dealing with chronic sinus infections. To say the least my immune system is screwed. The things that I have found that have helped the most for me are when they get bad are getting my protein intake up, electrolyte intake up, and water intake up. Vomiting and nauseous meds are there and it sucks. The fatigue and then having to do all this while being in the office and pretending it’s all fine is the worst. Get yourself some friends and family who understand. They don’t need to be perfect but someone to motivate you to get you to at least walk or cook or eat something is good. I pray that we can find a cure in our lifetime, but we’ll see. Keep strong, and don’t give up.
I’m just leaving the er with my 15 year old experience the same thing out of nowhere. She’s been healthy her whole entire life. I’m praying for a miracle.
I’m so sorry she is going through this. My best wishes for her. All you can do is support her. I hope she finds some sort of relief soon.
I’m proud of you for sharing this personal journey of yours and I hope that it helps others know that they aren’t alone❤️
In The name of Allah you are cure now... Please search Psychosomatic sumptoms... 😃
Thanks for sharing! I have had a very similar experience to you over the past two years - speaking with so many specialists and trialling lots of medications. It is really disheartening hearing the neurologist say there’s not much you can do, but it’s inspiring to see you’re still so hopeful, I defiantly was not when I first heard this message for myself. I’m trialling neuro blockers next week so I’m hopeful this helps! I hope you also find something soon.
Ah that’s devastating that you are experiencing something similar - I really am sorry :(. It definitely is disheartening but I haven’t ruled out all the options! Plus I do know people who have similar things for a much longer time and they are still hopeful! I really do hope that you find something that helps you as well - thank you for sharing too! Let me know how you go!!
Do you ears buzz with you headaches
Thank you so very much for sharing your story Well my story is extremely long but I relate to you very much I have been going through chronic pain chronic illness for the last couple years And was diagnosed with a few auto immune diseases unfortunately I thought those were bad until I started getting these serious painful migraines I was diagnosed with N DPH although I'm not sure that mine is not a migraine disorder at this point because to me I have no idea I have so many questions and so very few answers I've tried a countless amount of medications with no luck at all to be in pain every single day is absolutely draining the people around me don't believe me I think they think I'm just crazy and making this up
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
Hello, my name is also Elisa and I’m 23 years old from Berlin. I’ve got new daily persistent headache too after I had an infection in February 2020. My illness and my story with it is very similar to yours. I had a sinusitis and after I had antibiotic the sinuses infection went but the headache was still there. My headache is on the forehead between my eyebrows and it’s very similar to the sinusitis headache just that I don’t have the inflammation there anymore. My headache is there everyday and sometimes it’s better and sometimes it’s getting worse. I couldn’t finish my school and couldn’t work either. And like it I’m in my bed most of the days and sleep. I’m just hoping for better days with less pain and I’m still hoping I have a future without this illness but it’s very hard. You are the first person I’ve seen so many similarities with my illness and it makes me very happy even though I don't wish this pain on you at all and hope that it goes away for you. Thank you so much for this video and to make me feel less alone. You probably can agree that it’s just hell. But I cried after I’ve watched your video because it gave me hope. Thank you so much. Sorry for my english.
Greetings and wishes from Berlin. ❤️🩹
Hey, ich bin 20 und leide seit Juni 2020 auch an diesen Dauerkopfschmerzen. Vielleicht können wir uns ja austauschen. Würde mich über ne Nachricht freuen
@@swiftkatana hallo, das tut mir sehr leid zu hören. Wir können uns super gerne austauschen! Wie ist es bei dir dazu gekommen, falls du dich erinnern kannst ?
Liebe Grüße 🙏
@@alaskablue8934Hey, bei mir hat's am 20.06 2020 von einem Moment auf den nächsten angefangen. Nach mehreren Arztbesuchen hat sich dann herausgestellt, dass es keine organische Ursache für die Kopfschmerzen gibt, aber ich hatte sie seit dem Datum trotzdem immer konstant. Mein Schmerzlevel ist zum Glück meistens bei einer 5. An guten Tagen sogar bei einer 3-4. Leider hab ich durch die Schmerzen oder einfach zeitgleich auch Depressionen und Ängste entwickelt. Zum Glück bin ich gerade in Therapie und die hilft auch echt. Seitdem ich meine Ausbildung im August angefangen hab, werden die Kopfschmerzen auf Arbeit aber immer döller, was echt heftig ist manchmal. Deswegen werde ich jetzt nochmal zum Arzt gehe. Ich habe gelesen, dass es leider keine Heilung für diese Schmerzen gibt, aber dass man das Schmerzlevel wohl in Grenzen halten kann. Das ist momentan meine Hoffnung.
Wie geht es dir? Was hast du schon versucht?
(Sorry wenn du zwei Nachrichten von mir siehst. Die erste wird mir nicht als gesendet angezeigt)
@@alaskablue8934 Hi I’m also 23 and have the same as you. How are you doing? Do you find anything gives you relief?
Same here with similar experience. Sinus infection came and gone, but not the daily headaches. It may be related to issues with the neck, but not sure. Neck stretches with Brad are helpful.
I have have had NDPH for 13 years and it happened after jaw surgery. Thanks for sharing.
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
Good to hear your positive attitude towards this awful condition... I completely understand what you are going through, but I wonder if your condition is still in its early days... You say that you have tried so many different medicines, too many to list, but to be fair, given the short time since your diagnosis, you probably haven't had sufficient time to try each one prescribed. These drugs take time to act and aren't generally likely to have an immediate effect. In the eighteen months or two years you've been suffering, you haven't really had enough time to give each of the drugs a chance. I'm currently trialling Venlafaxin, and have been slowly increasing the dosage over a period of around 7 months so far. I am still planning further dose increases until hopefully I see a benefit... So don't feel that you are a long way into the condition, truthfully, and as unfortunate as it is, and hard to have to deal with, you may well have a long road ahead. I'm currently in my 16th year since being diagnosed with NDPH and have tried many different treatments, some of which work, but which cause side effects worse than the headache. I would suggest that perhaps you should revisit some of the treatments, but give them longer to take effect. Honestly, in the short time since your diagnosis, you really haven't had long enough for these treatments to take effect... Unfortunately it's a marathon, not a sprint... You'll need to dig in for a while yet. You may well have missed the chance to let the medication work... There is hope ❤❤❤
i’m 17 and have been living in agony for 4+ years, my whole life was flipped on its head the day i got the ‘first’ headache. i feel so alone with it, no one has or understands it where i live (even family). im so glad i found this video, you are incredible :) i feel so heard for the first time in many years. also like all of the stuff you said you went through was so relatable😭😭😭
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
For me it was very similar too. I’m 23 years old and I got it when I was 19. I couldn’t finish my school or work yet. And hearing that someone even younger then me has that too makes me so sad. I hope you doing okay. I’m very sorry it’s just hell. Sending you some love ❤️🩹
@@alaskablue8934 i just had turned 20 when i first got my headache and have now had it for 5 months straight. i get relief for a few minutes rarely and am thankful for that. working out sometimes provides temporary relief
@@alaskablue8934 I’m sorry to hear that. I got my headache when I was 22 and had it for 2.5 years. Hope you’re coping ok
I’ve been suffering this for more than a year, and got my diagnosed a few weeks ago. This is horrible. Thanks for sharing your experience. I hope it’ll go away soon, I don’t think I can do this anymore… ❤
+ I started my Botox treatment at the end of October. At the moment, I have not improved at all. Was the Botox treatment useful to you? (Sorry, my english is bad😢). Thanks! And thanks for sharing your story, I’m sorry you’re also going through this. ❤
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
For me Botox wasn’t improving too :/ at all
I’m very sorry for you too
Same story for me 4-4-2020 sinus infection in the back of my head only relief is laying down been so many doctors and nobody knows anything very frustrating
Fellow sufferer here. Have had a constant headache and tinnitus since Feb 2019. Started about 3 days after a weeklong head cold from hell. Also had a high-fever virus about 2 weeks before that, and a traumatic emotional experience a month before. Don’t know which or if all provoked it. Have had numerous MRIs, lumbar puncture, etc. I’ve seen an ENT, several neurologists, several chiropractors, physical therapists, dentists. Doing TMJ myofunctional therapy just as another spaghetti throw. Been on lots of meds. Only one that touched it was gabapentin. I think Qlipta and Botox help a little. Also fatigued and now have pain in other areas of my body, which one PT said might be central brain sensitization, and likely fibromyalgia. Bleah. Looking for any other suggestions. At least most days, the pain is manageable. Hearing your fatigue issues makes me realize that that is part of my stuff, too. I didn’t know if that was just from not sleeping well from the tinnitus.
Did you have a DSM? Sometimes spinal csf leaks can be missed on MRI. Tricky thing to catch but I swear a lot of these NDPH are missed spinal leaks
@@chanteldavidson4546 I don’t know what a DSM is? I did have a lumbar puncture early on when ENT doc thought I had intracranial hypertension, but my fluid pressure was normal.
Are you hypermobile I have fybromyalgia or migraine constant years the reason heds asperger's ADHD awaiting ADHD meds to try now after 26 years CFS pots fybromyalgia symptoms
I've been having headache since last year in April 24/7 upto date am still having headache and it's more than worse. The pain is unexplainable I can't do my daily activities or anything haven't been sleeping since last year till now. I've lost my speech because of the pain I'm struggling to breath because the pain is very worse and it's affecting my neck. I am feeling so weak and very tired. I've gained so much weight due to the headache pain and the medication that I am taking. Nothing is helping me, I don't have a break from the pain even for a 1minute. I've gone for my CT, and MRI scan and everything was normal. the doctors told me they really don't know how to help me. Please help me any how you can because I'm dying Please Please...Thank you God bless.
Do you ears buzz
I read your comment
Does your headache get better if you lay down ?
CSF leaks are rare but they can happen, you would need to get a full spine MRI because that’s where it usually leaks from
Sometimes a ct or MRI of brain will still look normal
Consider getting a new doctor
@@Fear-the-LORD. I am praying for you I hope that you have figured something to help you although I know you may not have because this condition is just awful it seems that there is no results that can help us
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
Mine started with digestive issues and I've never been the same....
Same here… digestive issues came, then COVID 19 and pneumonia then the headaches with tinnitus!! It’s been since December 2020 for me… so well over 2 years and it’s been a hard ride!!!
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
@@djbegaming5674same exact thing here. Stomach issues, then Covid followed by walking pneumonia, then headache constant for 2 years
I have constant headache (from the time I wake up to the time I go to bed). I know the exact date. It was 20 June 2021 and I had a very sad phase of around 5 days because of some reason. Since then headache remains and its not been a single second without it. It's been more than 4 months. I went to neurologist but he did not had a clue about it and advised me to get eyes checked. Eye test came out to be normal. He also advised me to see a psychiatrist and I have an appointment in few days but the thing is, I am not sad or depressed anymore. It was a traumatic experience on 20-25 June but I was not sad after that period got over. I am very eager for cure because I am not able concetrate on my college studies. If you recover from it please tell the hospital or doctor so that I can show them.
There are treatment options like BOTOX and surgical options like peripheral neurectomy and nerve decompression surgery. Consult a plastic surgeon for these.
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
@@002dakshagarwal3 In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
Your story is my story. It started 8 years ago after heavy bloodloss.
You are strong
I’ve had NDPH for a little over 7 years. I’ve tried every medication in the book and nothing worked. Gabapentin helped a bit but northing was concrete. Now for the last 6 years or so, I’ve been receiving Botox treatments and it CHANGED MY LIFE. Reduced my migraines days from every day to less than 10 a month.
Hello Brianna, good to hear botox works a bit for you! Just wanted to ask if you have ndph or migraine? As you start with ndph but later mention it reduced your migraines. Might want to try botox if it is ndph. Thanks!
My boyfriend has a headache that's lasted 4 years. Also has been on tons of medication, had to quit his job and can't really do much. It was painful to watch his decline. He's found some medications that help with the pain but still not cured. Neurologists have tried to help him to no avail and he just lost his disability because new daily persistent headaches are not enough to get disability. Really unfortunate. But we are still hopeful.
Have him check for a CSF leak if his headache feels better when lying down
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
@@gvillarreal79 In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
So glad I found you. I have NDPH too. 4+ years now unfortunately. Thank you for sharing your story.
Ah 4 years sounds so difficult, I’m sorry you’ve had to experience it. Thanks for reaching out! It definitely makes me feel like I’m not alone! Have you found anything that has helped you?
A physical therapist told me to massage two of my nerves near the intestines every hour (I do so while sitting so I can find the nerves by moving my legs) and after a week of doing so my headaches became way weaker, still here but weaker.
But the massaging hurts a bit and if I stop they go back to usual pain.
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
@@chronicallyroaming In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
@@llcoffee In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
Hi thank you for sharing. It’s good to know we aren’t alone. I’ve had NDPH for the last 2 years straight. It’s the worst feeling in the world when the doctor tells you they can’t help and we have to live with this for the rest of our life. I’m working with Mayo Clinic now trying to figure out some kind of solution and to get some kind of relief. Hope and pray one day we get a cure 🙏🏼🙏🏼
Any updates?
@@carefreelivingg16 Still working with Mayo getting a spinal tap next week. Hoping and praying for some kind of answer to these terrible headaches. These headaches ruin your life
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
@@carefreelivingg16In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
@@jcapo41 In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
I had the same thing happen except I had strep throat and then like a week after the strep I woke up with the headache and it never went away and that was 9 months ago and so far nothing has helped either
gabapentin has helped me slightly though i still have 2/3 bad days a week lol
Part 2: How to empower people with chronic illnesses.
I'm not a doctor but agree with kRaZyJ AsPaRtAmE - avoid artificial sweeteners & too much caffeine.
I never ingest artificial sweeteners, my caffeine intake is low, and I have persistent daily headaches! They started two years ago.
Sweeping generalizations are lazy thinking.
I've had a headache for a solid week now. Nothing like this has ever happened to me before. But just like my tinnitus happened one day and never went away, I'm not holding hope for this to go away at this point. I'm just starting to research what it might be. It feels connected to tension in my neck, so I'll probably at least go to a chiropractor. But as far as exploring all my diagnosis and treatment options, I've run into the US medical system where insurance costs so much that it would make it hard to pay rent, and specialists charge too much to afford. So here I am on CZcams just trying to figure out if I could die from it. Because short of that, I'll just have to deal with it.
I’m in the same boat
@@BriW444 mine did go away. Can't remember exactly how many days it lasted though.
@@mountaindew267 I’m praying mine does I think mine might be stress related and I keep cracking my neck and back to relieve the pressure
I'm in the same boat. I'm into my third round of intensive tests and specialist visits. There's a consensus that I probably have a postviral syndrome, probably long covid.
It's incredibly frustrating because they all agree that there is something wrong but nobody can put a finger on any single thing! my heart and lungs are fine but I always fail the treadmill test - I get breathless very easily. No diabetes or anywhere near prediabetes. My weight is at the low end of normal. Kidney and liver function are excellent. C-reactive protein is normal. Other inflammation markers are low.
I'm getting more and more worried. I'm afraid that I may be forced to retire early and that would seriously damage my retirement income both from Social Security and from not contributing to my retirement plan. Plus, I live in the USA - I can't afford to lose my employer- provided health insurance.
Try Nortriptyline
I have the same thing 4 years now your story matches mine so closely went through a ton of meds nothing works. Luckily I only have it on the left side of my head. I found nasal ketamine works to cut the pain in half. I hope you have found something to reduce the pain a little bit. Unfortunately I have given up trying to be pain free just less pain helps.
Hemicrania continua?
@@moxanation73 nope I took the medicine for that first and it didn't work.
Does it feel like a migraine? Or a little different?
Also how are you now and what treatment has helped?
Hey! I have had a headache since March 15 of this year. I got scared because I felt a bump on my head that I thought wasn't there before but I was overreacting and I have the same bump on the other side of my head (I was concerned that it could be a brain tumor😭). But this headache is persisting until today May 6. I can describe it as a tension-like feeling in my head, and sometimes brief shooting pain in the right or left side. Do you think it's NDPH? I need to wait until I go to the doctor since the diagnosis is 3 months minimum.
Hey! Definitely don’t wait to go to the doctor, even if it is or isn’t NDPH it is still super important to chat to a professional. You definitely could have it but I wouldn’t diagnose yourself yet. If this headache started with a “trauma” (like for me was an infection) then it is likely that it could be NDPH. Regardless you probably need to do more tests (blood tests, MRIs, CT scans etc.) to rule out things that it could be. Feel free to ask more questions but definitely go to a doctor!
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
This is what happened to me I had a burning sensation on my head and freaked out it was a tumor and then the headaches began
I'm 25, last month I suddenly woke up with heavy dizzines and headache, went to several doctors and nothing worked. I finally went to a neurologist and medication kinda worked, but I still want to get a CT scan just to make sure I'm safe.
I’m 24 and have this, how you getting on?
Also did it get better
Hello, I am also a ndph patient. I have been ill for nearly a year. Can I communicate with you? and what medicine are you taking now?
I was caused by a cold and fever. At present, I am taking amitriptyline. I feel a little helpful. How about you?
Do any natural products like eye masks help you?
Has there been stories of people having this headache for months or years then it goes away.
Did you manage to find a treatment?
So glad you are coming back. Hope you are alright! See you soon;)
Have you tried NMN/ B3 Magnesium repairs nerves B5 B12 all 3 B vitamins prevent headache if you find foods rich in these nutrients you will decrease the intensity of headache
Also Dr Joseph Jacob from Florida has an ASTR webpage explaining scar tissue and fascia tissue release techniques that may give you some help tools and tech available online for home treatment
My daughter has NDPH since 2012, shes now 24. She suffered from debilitating migraines for two years aged 11 to 13yrs old. Migraines are nothing like NDPH.
I've got it now transformed upper body no headache
@@Truerealism747hm?
Will this go away?
Did/do you have a stiff neck? Thanks
I did/do
@@connorwogen8106 I suffered from stick neck and headaches for years. This is due to MOUTH breathing. There could be a causal link here as during infection one starts to breath through their mouth. If you place your hand at the back of your neck feel your neck muscles contract when you mouth breath
Avoid aspartame x
Any updates?
Does NDPH eventually go away?
Not as far as I know. I haven't read of anyone actually being cured, but we can only hope! After 17 years I'd think maybe something could be done, but I'm still waiting, 😢😮😅
You need to work with a holistic migraine practitioner, or naturopathic migraine doctor. Heal the systems in your body that could be healthier, and it goes away. They're not cheap but worth it.
Heard most diseases begin in the gut? Pls check into this. I suspect all these drugs you've taken cause bowel problems. Idk what your diet is like but it can cause digestive issues.The brain and stomachs are closely related and when one is in pain the other sympathizes.I pray this info helps you! Thx
Where’s new content sweetie?
In The name of Allah you are cure now... Please search Psychosomatic symptoms... 😃
do you have neck pain? try a chiropractor.
Thank you for the suggestion! I have seen one but I am going to a specialist chiropractor soon :)
@@chronicallyroaming if the special chiropractor isnt helping with the headaches then maybe you are grinding your teeth at night. You'll need a night guard. I hope you find something that works!
I have got a mouthguard! unfortunately it hasn't made a difference but still worth a try. thanks for suggesting though :)
@@chronicallyroaming sorry to hear that it's not working. I hope you find something that does! Good luck and stay awesome!
@@chronicallyroaming are you still getting the pain?