HELLO EVERYONE — Parent support forum of children teens suffering with migraines

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  • He could have them maybe once a week which is good for him and Excedrin Migraine works at that time but when it doesn't work it can go on for a day or more like a runaway train. It started out as a day but it has lasted a few days, week, or a month.

  • Chala M. Brooks, would you recommend the oils for just a headache?

  • Xxxxxxx Yzzzzzz, I'm sorry I'm just seeing this. Trying to respond to all the post I missed since I can search for them all now in each group by putting my name in.

    I have seen how the essential oils can help with headaches but since we last spoke things had changed with how they worked for my son. It's not the oils, it was his medical condition. I think I have finally found really relief for that. I had a hunch that it could be inflammation triggering the migraines for him, so I took him off milk b/c dairy is inflammatory. I tried milk first b/c it was liquid and used more often than any other dairy. We've had success so far and thanking God everyday.

So how many of you have gotten the if you would just give your life to Christ... — New Daily Persistent Headache

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  • Religion is very private here, so I've never been told that :)

    No politician here says things like 'God save us' etc :)

  • I am a follower of Jesus Christ. He is my healer and delivered and I trust him to help me every day. I believe in relationship and not the empty religion that Jesus accused the Pharisees of. I would not say to anyone just give your life to Christ and everything will be ok. I've had other Christians say to me similar things when I had depression and found it very unhelpful. There are well meaning people of no faith just as there are well meaning people of faith.

  • I agree that they are well meaning. Some people struggle to understand "invisible ailments". I often ask if they broke an arm, would they just trust in Jesus, or would you go to the emergency room to get it set?

Has anyone tried Kaplan Headache Center in Albany — New Daily Persistent Headache

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  • I live on the VT/NY border. I moved here a couple years ago from Arizona, so I'm not super familiar with the area. I see Dr. Ward and really like him.

  • I live there too! I'm in NY just across from Bennington, VT. I see Dr Ward too. Small world isn't it?

  • Yep. I live in Bennington.

Has anyone had a Sphenocath I have been in severe pain for a few weeks now and... — New Daily Persistent Headache

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  • I had the same experience as Kim and actually did the procedure twice. It's a little uncomfortable and my headache went away for about two seconds before it came back just the same as before. Good luck! In my opinion it's definitely worth a try!

  • I agree Jaycie! I don't know why this isn't tried sooner in the scheme of things!

  • Yeah I've tried thinks like it but not this exact option. Those didn't work but we'll see how this does. Thanks guys!

Completely new pain tonight. Normally have pain the the front of my head — New Daily Persistent Headache

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  • No meds whatsoever.

  • It happens to me out of the blue, it's one of those "oh, hello pain i haven't felt in a while" but remember it as it's happened a bit now - and no medicine, nothing works for me. Good luck!

  • Never had that happen. Hope it's nothing. Hugs.

Our insurance just approved our son s inpatient DHE infusions He is scheduled... — New Daily Persistent Headache Support

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  • Exactly. I have elevated ANF (a marker for inflammation) but not high enough to explain my headache or diagnose an auto-immunune disorder. Apparently there are studies about people with these disorders whose tests are negative. (Told to me by a neurologist at UCSF.)

  • I just had the DHE infusion two weeks ago. Was supposed to be three day stay, turned into 5. The DHE made me so sick. Had to have 8mg via iv zofran right before and after every 8 hour infusion. The worst part was they didn't work at all for me...

    I go Tuesday to Cleveland Clinic to start my first round of botox injections... So nervous!

  • Good luck.

Our insurance just approved our son s inpatient DHE infusions He is scheduled... — New Daily Persistent Headache

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  • I have done a DHE infusion both as an inpatient and as an outpatient through a PICC line with Home Health. The infusions don't seem to help me but the DHE injections are very effective. During the infusions I spend most of my time very nauseated so I also take a load of phenergan. As a result, I sleep through most of the infusion.

  • I have been hospitalized 5 times to do DHE. It takes quite a few days to break my headache which I have had for over 3 years 24/7. It is the only thing that has worked for me. But in a few weeks it has always come back.

  • But, the few weeks the headache is gone makes the treatment worth it.

i am so week from fighting these things Praying it eases up again before i rip... — Cluster Headaches Exposed

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  • Xxxxxxx Yzzzzzz I too have fibro and it seems all this hit me at once. At least we all understand each other and we're here for on another ♡

  • Imagine how cool it would be to be able to take a couple weeks vacation completely pain free. Even better a cure for these things. Not Just CH, TN and the primary/secondary headaches but all the things that ruin quality of life for so many.

  • A little science fiction... imagine that they could insert a small computer in your brain that filters all pain signals before they reach the brain and you feel it. It makes a determination if the pain is a nonsense pain like the ines we have. But lets the ones like being burned or straining a muscle thru like normal. Oh well.... maybe in another couple hundred years.

Hi everybody could you please describe your headaches here in detail I have a... — Cervicogenic Headache Support Forum

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  • Christine, I´m sorry, for your diagnosis-trouble, hope you will find the right solution for whatever it is. For me it looks like some neck problem too.

  • I don't know why they all can't decide.

  • neither do I :( I was misdiagnosed for 20 years and I think disinterest of doctors played the biggest role :(

Has anyone had hallucinations before getting an attack Last night was the... — Cluster Headaches Exposed

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  • I'm so sorry, Tamara. How aweful to be alone thru your pain. Please don't do anything. I'm here and care about you. I am sick of pills though. I feel nauseated and like they're making my pain worse at times. Hugs and love to you ♡

  • Yes, these meds may have purpose but they are toxic.

    Maybe put a good movie in tonight. Something wonderful like Thelma and Louise. A great kick ass chick flick to take back our spirit. I hope you get good rest tonight. ((Hug))

  • I love that movie. Hope you sleep well tonight ♡♡

One other question — Cervicogenic Headache Support Forum

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  • I have had epidural, facet nerve blocks and radio frequency ablations all in that area. Just had ablations to the C2, C3, C4 and C5 on the right side yesterday. I have had them in the past as well. I have never run into complications with any of them.

  • Linda REALLY!!

    Any surgery or PT??

  • No surgeries to that specific area but I did have nerve decompression surgery on the occipital nerves and a nerve stimulator implanted and removed (didn't help). The battery pack was implanted in my lower back and the leads ran up my spine to the occipital area. I also did a month of PT for my neck but saw no improvement. None of these made things worse. I did get some relief from the occipital nerve decompression surgery.

I m so glad to be in this group I have had a chronic headache all day everyday... — New Daily Persistent Headache

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  • That makes sense. My headaches were very positional after the LP, but over time that went away and the pain was just constant. I hope you can find something that helps, living with pain every day is very hard.

  • Absolutely. Thanks for the encouragement!

  • Following- my dr has mentioned lupus to me since I have other autoimmune and systemic symptoms that are unaccounted for but no firm diagnosis other than new daily persistent headache

— Cervicogenic Headache Support Forum

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  • Edina, I had lots of pain, my pain was similar to your pain. I had it every day.Neurologists diagnosed as migraine for about 10 years.finally, my pain management dr said that is cervicogenic headache. I hospitalized several time.They injected morphine but it wasn't useful. my pain was terrible. I became candidate for ONS operation. fortunately, he could control my headache.

  • Julie, and do you have any problems with hands? when I went to physiotherapist and related doctors, they were all automatically expecting, that I have hand-problems. But the only thing I experience in that region is tingling in my right little finger, and that happened about three times in my life. Everything happens in my head - and for the last monthes I developed also some strange scary facial pain in right cheek, looks to me like some neuralgia :-/

  • No, I have no pain in my hands, just my head.

I saw a new headache specialist today. He was extremely understanding and nice — New Daily Persistent Headache

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  • good luck :) The Botox din'thelp for my NDPH or Migrianes. I hope that you have the same uccess as last time!

  • Thanks Cheryl Bedore Strieter.. I'm hopeful that since they helped my migraines they will help the NDPH. However I know that this thing is a beast of its own

Really difficult day I had spent numerous hours preparing for an pharmacology... — New Daily Persistent Headache

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  • ah man I can totally relate. I think my instructors (masters program) think I'm imcompetent too :( I had something happen in class the other day where a teacher made me feel like a total idiot, and I was so upset. It helped me a lot to get angry (defense mechanism?) by myself later, writing down all the things that are very easy and obvious for them that I unfortunately don't get to experience. They just don't have a clue and in all likelihood would not be able to do the things you are able to do every day despite the pain. They probably wouldn't make it one day. So hold on to that character you have over them, and be patient with yourself. It sucks to not be able to live up to your potential but you'll get there! And if it takes longer that's already pretty damn awesome considering the circumstances! Heck they should put that on our diplomas when we graduate: survived school despite unrelenting, incapacitating head pain.

Thanks — New Daily Persistent Headache

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  • Sorry to hear your daughter is suffering from this too, mine started when I was 15 (21 now), know how hard it can be suffering from this in your teens, though any age is difficult. I hope you find the group useful and find some treatment ideas x

  • Welcome to the group. My son is 16 & going on 2 yrs. No relief for him either & he missed a whole year of school & is currently out again. We are in the U.S.

  • Mine started at 16 and I just hit 5 years. It's the worst. It's so hard. Navigating school and friends especially! I feel for her! I'm here if you need anything!

has anybody looked into that cluster headache treatment headband that like — Cluster Headaches Exposed

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  • i thought that to but DR said no. broke mine in 2 an back in 7 a t 12 twice . that's a whole different thing. thought that for years till I found this other group.

  • You know when you break a bone and develop arthritis later on? That's why I thought of this. I don't trust all docs when it comes to these things. As we know this thing is the most misdiagnosed disease.

  • Ya know there is a reason it is called medical PRACTICE

Its interesting what everyone does to fight the beast I dont drink coffee or... — Cluster Headaches Exposed

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  • I absolutely agree with you, Bruce Morgan. unfortunately, the steroid is the easiest fix to break a cycle for me and it's realatively quick. 3 weeks and I can be enjoying my martinis again.....hopefully.

  • So you had breaks...you're right about prednisone. It's the fastest medication out there for me too. I don't mind taking it for a couple of weeks while the verapamil gets into my system. If waking up with a full blown headache wasn't a potential problem, I'd just rely on my O2....

  • prednisone just doesnt work for me anymore, and unfortunately drinking any alcohol is out of the question.. always the designated driver .. drats foiled again... sooo O2 so far is working......but June is coming I hate the month of June we shall see if I can keep the beast at bay

I know many say drink red Bull Is this everyday Or when you re getting an... — Cluster Headaches Exposed

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  • This morning I did this with coffee. And chewed a vicoden and shoved it between my top back teeth between gums. Nerve pain. I can't take it much longer. I was at er with my granddaughter for 4 hours last night. I got home and it hit. I.been up all night and had hallucinations.

  • I have severe anxiety as well as sleep apnea and chronic ch I find verapamil, monster and medical grade og kush bring my issues to a minimum as well as location change. Just keep tryin and find what's best for you.

  • That's right. Keep trying. Everyone is different.

On occasion when I have shared the frustration and agony of constant headache... — New Daily Persistent Headache

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  • Iits healthy to share your feelings. Some people just don't know how to help and sometimes say words they think might give you strenth. Just take it as that and you get to know the people who you can talk to over time who can handle your need to have a shoulder to cry on.

  • Amen!!

Does any one here also have horrific nightmares I mean I could write Spielberg... — Cluster Headaches Exposed

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  • Now I think about it, I probably had some pretty bad dreams. Reflecting on this topic, I know I toss and turn in bed. My teeth are even being grind away without even actually having headaches anymore. The doctor only recommended a sleep study in which I cannot afford. He believes my REM is back to normal, but its not entirely "normal". Without the sleep study they cannot determine why my headaches has stopped, but I wake up more "restless" even after sleeping 6 or 12 hours. In one case the doctor prescribed Xanax for stress and anxiety, I was able to sleep a normal 7 hours and wake up refreshed. Other then normal bills and "work" there is something more underline which he believes is causing massive anxiety which might of lead to my headaches to begin with. Figured I would throw this out there because so far its not decided since I cannot afford a sleep study.

  • Often. I use to have funny dreams and wake up laughing. Now most are horrifying and angry

  • Yes I do have them all the time ,it's with your body's temperature going up I also get bad palpitations, I have always get the nightmares it horrid.

I feel like crying — Cluster Headaches Exposed

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  • Since he has made another rude and unapologetic comment, I am forced to leave the group also. I wish you all luck and pain free days.

  • Jami Robertson Widrig....I respect your decision and understand your reasoning. Best wishes to you, my friend and pray for PF days and nights xo

  • ok I am new here so who was rude?

Well here it is guys I just got it in the mail yesterday. So excited — Cluster Headaches Exposed

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  • On the other side it says, " Fight the Fear" which I think is appropriate for what we have. I'm always trying to keep the fear away as much as the actual CH. She also has keychains a too. They are made from the same. Bracelets.

  • That sounds even better :)

  • Xxxxxxx Yzzzzzz xxx

I m fighting an attack coming on. I need to be with family — Cluster Headaches Exposed

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  • What?!? Seriously?

  • Yes I saw it on one of the sites. I saw something that said the average Dr only sees 1 cluster headache patient during all of their years of practice. I saw one of the better neuros in town and rhey diagnosed me correctly but had no idea what to give me. One gave me stadol fir pain

    Ford Headache clinic put me on the right path. He was furious with the other Neuros

  • I can believe that about the average doc only seeing 1 CH patient in their career. We are the rare and beautiful unicorn!

After coming off meds in October 2013 and having no symptoms since 2 weeks ago... — New Daily Persistent Headache

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  • What made it go away the last time? I dont talk about my headache much with others. If its a bad day, i tell my family i need quiet b/c my head is hurting. I discuss treatments and prospects with my hubbie but he knows my head always hurts.

  • I woke up one day and it was just gone. It had stopped. Then I gradually came off my meds and I was fine. My partner has been reading up on it but he finds it hard to understand how it can hurt everyday. Its new for him.

  • My usual answer to "how's my head?" is "Attached." I just got tired of answering since the pain doesn't stop.

Feel free to not answer this if it s too personal — New Daily Persistent Headache Support

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  • I love MHNI too. I'm on college and have been dealing. I try to attend most classes. I'm luck my college is small. Professors are understanding and I get extensions to finish over Christmas break or go into the summer. It's been hard, but I graduate in may so the end is near. My work/internship is so nice and understanding when I had to leave for the hospital or surgery. Just take it a day at a time.

  • What is MHNI and where is it and what was the treatment you received Stacey Walsh

  • MHNI stands for Michigan Headache and Neurological Institute. It is located just outside of Detroit. After your first appointment with a neurologist, they decide whether or not to recommend you for their inpatient program at the hospital. I stayed in the hospital for 5 days where I was treated with various IV meds and other medications to try and break or at least reduce my headache. I also received nerve blocks and trigger point injections. I love that they also introduced me to effective abortive meds that aren't narcotics.