Hi I don t post much here but all the things I ve read have really had an... — New Daily Persistent Headache

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  • I have never been to a counselor or therapist. I dont feel like i have depression issues, but my physical therapist did go over some visualization and pain coping strategies. I also had a PSY stress and tension control class in college so i was already familiar with his techniques. Funny thing is, visualization helps with migraine, but not my constant headache.

  • I had chronic headaches since a car accident in 2003, I wouldn't take any meds besides ibuprofen because I drive a school bus, I have also been on anti anxiety meds, I was also supposed to do Botox injections but changed my mind, I am happy to say that I do not have daily headaches anymore maybe one per week if I do too much but it is all since changing my diet, I was so inflamed that I could barely hold my head up and I have been more active now and strengthening the muscles...I really hope you find relief soon!

  • My daughter has NDPH and a therapist has helped. Recently she was referred for cognitive behavior therapy such as bio- feedback and that has helped her immensely by giving her coping tools and helping her to recognize when she needs to calm herself and/or pave herself. Highly recommend it!

Just wondering if someone could point me in the right direction I am having to... — New Daily Persistent Headache

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  • Xxxxxxx Yzzzzzz I am having to have a diary for them to see if I am a candidate for Botox which my consultant knows I am but for the NHS to fund it they have to see evidence that I suffer the migraine episodes on top of NDPH it is thoroughly annoying that my 4.5 yrs of medical records don't seem to be enough, but nothing much I can do other then carry on.

  • If u go into files within the group there is a scale there x

  • It's a good idea to add a descriptive pain scale with your charting as we've seen on groups, each person rates pain differently. On some scales, a 10/10 would be like having acid poured on you burning you alive until you went unconscious. I've seen many people argue in the groups when someone is online saying they are 10/10 and other people are saying that's not a 10. Some people rate it based on their own experience of pain so being functional and 10/10 can still coexist. My headache clinic asks all patients to use a specific scale- my ratings on that scale were about 2 points higher than how I rate pain comparative to what I imagine the worse pain ever. My head gets really bad at times but I'm positive it would be more painful to have my arms ripped off. Lol.

Headache has been worse than ever these past few days. Nothing is touching it — New Daily Persistent Headache

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  • Me too, mine spiked mid week after 2 weeks of more bearable levels :(

  • Last night. Thought I was going to die. I woke up this am. Thank God. I thinks it's the moon. A lot of my friends couldn't sleep last night & or had bad pain.

  • I woke up today feeling a little bit better. I feel like I lived a nightmare for a few days. I'm kind of in shock.

Does anyone have more than one child that suffers with migraines — Parent support forum of children teens suffering with migraines

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  • My sons started at age 7 and my daughter when she was 11.

  • I have 4 daughters, 3 with varying degrees of migraine. Oldest has maybe 1-2 a month. Second daughter is migraine free. Third daughter has been chronic daily for almost 8 years now, and 4th daughter averages 1-2 a week (and hoping she doesn't become chronic). STRONG FAMILY HISTORY.

  • My son 8- has had since he was around 2...my daughter 11- aren't as severe but had them since around 5 or maybe a little before

This book is quite difficult to understand in terminology at times but its got... — Cervicogenic Headache Support Forum

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  • Penn, I was so shocked! He sends a vibration through with a tool and you can't even feel it. I was amazed that it hurt me so much.

  • Thanks Mandy...I need all the info I can get, especially now I'm doing this twice a week

  • I felt that way Julie, with the last Occipital release my PTherapist tried.

I just read that people with NDPH are usually tall and thin with long necks — New Daily Persistent Headache Support

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  • I'm 5'9 I believe, and I have an average neck. I think definitions of thin change, but by what I think you mean I don't think I fit into that category. However I'm in a healthy BMI

  • Thats me :) x

  • 5'3, average build , average neck.

UK sufferers I think the ONS has been approved. I found this whilst googling — New Daily Persistent Headache

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  • Write a list of the kind of work u would like to do and get ure self out for just 1hr a week. It just allows u to escape for a short while and if u like the escapism it will help with the feelings u have at the moment. Sending hugs. Remember it's ok to have a bad day just make the good days extra special. U r worth more than NDPH so let's give it the two fingers xx

  • Will try writing a list tomorrow. Thanks for the advice :) I will try to! Xx

  • Just start with adding one a day for a week and then take it from there x x

Sorry for the rant but I need to vent as I haven t managed to calm down from... — New Daily Persistent Headache

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  • I'm so sorry you had to deal with this!! Hopefully you'll get in with someone who will actually help you

  • I'm so sorry! I understand what you are going through. I'm on my 10th Neurologist in 4 years. I do not think that they know how to help anyone that does not fit in the box. Keep your head up and don't let stupid people bring you down! Stay strong!

  • So sorry it didn't go well for you. I sometimes wonder what is the most frustrating aspect of this condition as the treatment from some of the medical profession is right there at the top. I contacted my headache clinic today to find out what was happening now I had completed my 3mth diary to prove I have a chronic headache condition ready to be put forward for Botox only to be told that it was in my notes that an appointment will be made to see the Consultant, she said this should be for end of July/beginning Aug, but as he has a long waiting list this could be more around end of Aug, I can't understand why this appointment couldn't have been made 3mths ago as they knew that I would be needing it then. In the 18mths I have been at this clinic I have seen a Dr once the rest have been phone consultations. Hope your day picked up bit.

Morning everyone I hope y all are having or will have a low pain day I wish I... — New Daily Persistent Headache

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  • Xxxxxxx Yzzzzzz!!!

  • Good news on my side. Saw my neuro yesterday and he confirmed that from previous MRI that I had there is no possibility for MS. Upon my suggestion, he simply increase my Metadone to 24 T.I.D. Life goes on.

  • Sad for your sisters Patti but glad that you came out negative. Chances weren't on your side but life is. I hope that your sisters don't have bad headhaches or NDPH.

I have just finished my first week at the Diamond Headache clinic — New Daily Persistent Headache

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  • My son was treated with DHE cocktail for 3 days approximately 4 months after his onset. He has now been headache free for 2 months.

  • Great news David Larson. I think early diagnosis is one if the keys to recovery.

  • I was there for two weeks. I just felt like a zombie the whole time but my headache didn't really get any better. They just kept giving me DHE which makes me super sick with phenergan and zofran and then the Benadryl so I was sleeping pretty much the entire time I was there. They didn't really help me. But I hope they find something for you.

This is going to be a very hard week — New Daily Persistent Headache

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  • Hang in there Susan! Sending wishes for strength to you and your mom this week. Although a spontaneous recovery from ndph sure would be nice too!

  • Witnessing. Sounds difficult and wishing you and your mother well.

  • Yeah Susan Thompson, I know I have 6 siblings and no help, they get offended if I ask like I'm asking them to do something that is totally unreasonable. I understand exactly I wish I was there because I would help I surely would. Mine yesterday made me so mad if I could I would send her to your house I would have switched with you for a day but we don't get that choice there are no vacations from life and when there are we wish there weren't good luck

Anyone have any experience with CSF leaks I ve been having a random clear... — New Daily Persistent Headache

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  • A friend of mine had the same symptoms and she was able to collect the fluid so they could test it to tell for sure.

  • You can have a pledge study done if you don't have a lot of drainage.

  • Pledget... I think that is what it is called.

This stormy weather we ve got in the UK at the moment is playing havoc with me... — New Daily Persistent Headache

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  • Claire is there any update on the funding situation that you know of?

  • Nope but I'm down on August 5th with Mr Watkins so will find plus I am seeing my neuro tomorrow up here so will ask if he has heard anything

  • Ah okay, let me know if you find anything out. Hope the appointment tomorrow goes okay!

Not sure if I can ask here I m new to this group Want to try cannibas but it... — CMA - Alternative Approaches and Gluten Free Diet for Chronic Migraine

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  • I'm in FL and no, it's not legal

  • There are some states it is legal but federal it isn't.

    Many have found that it helps. It is one of those things you have to try for yourself to know. Colorado is a good place to go.

  • I tried in Seattle a few times. For me, it made my migraines twice as bad. And nausea was gross.

Brutal couple of days Headache s been coming on so fast and furious 2 3 times... — Cervicogenic Headache Support Forum

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  • It sucks to be at work with this pain. Especially because are condition is so unpredictable in range of symptoms uprise

  • Julie, are you then setup for Botox injection series in August?

  • Mine was administered by neurologist #2. Have to stay, he was diligent about getting approval paperwork to Allergan and insurance. The process took about 10 days prior to application procedure. I also had to sign a few documents pertaining to Black Box warning

Hubby and I are hosting family friend holiday weekend barbecue I m alone in... — Cervicogenic Headache Support Forum

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  • Good for you, Julie. I'm in GA and so many family members travelled from MD and South to bring my "babies." I'm so grateful.

  • Thanks, LeeAnn Sutton Barnard. Enjoy your family and time together. We learn to do our best.

  • I was with family on Thursday. My parents are SUCH triggers--they quibble and talk over each other. But my little niece and nephews were such a delight.

My doctor prescribed depakote. divalproex. to add to the elavil. amitriptyline — New Daily Persistent Headache

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  • It took me a little to figure out it was the medication. Just clumps were falling out every time I brushed my hair. It stopped falling out about a month after I stopped the med.

  • My son was on both of them together for a short time. When Dr added amitriptyline to his depakote he started eating everything! Gained 20lbs in a month so he went back off of it.

  • That was one of the first combinations of drugs they tried for me. It didn't really help, but I didnt experience any of the negative side effects the others had.