Hi all thought I would introduce myself. I am newly diagnosed. yesterday

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  • Hi Jessika. Welcome to the group. My son is 13 and has had NDPH for 3 years. Doing ok at the moment with 3/10 pain but hasn't always been this great.

    Ne was in naproxen too but we have manages to swap that over to a more natural Curcumin suppliment. He is also getting a lot of relief from vitamins and minerals so always good to check if you have a deficiency in those. Magnesium, zinc and Vit D are quite common with headaches. We are in Sydney Australia so that was a shock. He was also low in iron and selenium.

    Cranial sacral massage has helped him too.

    He is back at school now after hardly any attendance over the last 3 years and even doing some of the school sports so don't give up hope.

  • My daughter is very similar to Kris El Bayeh. We had very little relief from drugs. They were screwing up her stomach. We currently working on vitamin/ mineral and essential oils. Added medical support by a chiropractor.

  • My son was actually messed up a bit with medication a year ago when they sealed one anti seasure med to another. Because of it we had to add an antidepressant. He is still on both as we swapped back again but they never did much beside give him lots of side affects. That's what lead me down the more natural route with a biomed GP. I have just started dabbling in oils for my daughter who has other health issues. Have you found any that help with your daughter headaches LiLinda Curtiss Hill

  • Hi Kris. In regards to pursuing the vitamin/natural treatments, did you work with your GP or see a natropath or something similar?

  • Welcome to the group Jessika, I'm just outside of Edmonton, and have had NDPH due to a spontanous CSF leak. Where are you from?

  • Peppermint. My suggestion is find somone who has the oils and let your kids smell them. If they like the smell it seems to work better for them. I do not sell any oils So this is not a sales pitch. We havebrrn buying Doterra and Young Living both.

  • Bec Driscoll I started with a naturopath. She didn't do testing other than pyrroles and found a lot of his zinc, b6 and other thing where not being absorbed. She also started him on a magnesium. Straight away pain started coming down. Mood was better. Anxiety better. My family doctor isn't great so I found a biomed doctor . They call them also funtional and intergrative doctors. She did a whole lot of tests. Blood urine and poo and a nasal swab. Looking for MARCONs in the swan but came back negative but also high staph count. Deficient in about 5 things and low in a few others. Parasite testing , celiac geology , candida, tested for the gene that tells you if mould could be a problem , all came back with clues for us to tick off boxes. I still see both. The doctor helps with finding the problem and the naturopath helps with finding the best suppliment for the problem. My son also tested positive for the mthfr gene mutation so that affects his ability to absorb folate acid and other things we haven't even really started working with that yet as everything takes time to see if it's working or not. His diet is next on our list as if naproxen a working for you then that works on inflammation so we are working towards removing inflammatory foods like gluten and dairy and also restricting high Tyramine foods. For us the key to getting my son better is to make him as healthy as possible and hope his body can heal itself one day. His headaches started 2 months after an emergency appendectomy.

  • I have fibromyalgia. I refuse to give into strong pain meds until I just can't move so....oils and alternatives is what we have been testing.

  • We also still see our Neurologist and pain team at the hospital. It's important to have everything treatable ruled out as well. The neuro is very open to my following the more natural route

  • I have a friend who sells DeTerra so have started with the Oregano on my daughter who has Symptoms of PANDAS but undiagnosed as yet. Seemed to of helped calm down her last facial tic. I didn't get any mint as I don't like the smell but might give it a go. He is very sensitive to smells as am I but I found I can smell the oils all day and no headache but if I smell someone's deodorant I get one come on.

  • For whatever reason no one in my house likes Lavender.

  • Thanks for all of that Kris. I've followed his story closely over the months as I'm from Australia too. My gp is lovely, I just think unsure how to treat, so I find I goto him with suggestions and he runs with it. I'm just trying lyrica atm but along time was medication free as the side effects were worse. Have been on alot over nearly 6 years. Cutting out gluten and sugar keeps me from spiking almost instantly, due to inflammatory reaction. I don't even eat fruit anymore. I saw a natropath years ago, who was useless, but I'm thinking of exploring that Avenue again. I might talk to my gp about a biomed gp. Also take magnesium,b12 but makes no noticeable difference. So glad to hear your son is at a more manageable level

  • Yes I understand. My gp is great too but really has no idea. My sons biomed doc is part of a network. They have a page to find others in different area. Her fee is cover a bit by Medicare too. I have no internet at the moment. Got to love Telstra but will dig up the link for you whe it comes back on. Unfortunately Lyrica was the drug that messed my son up. He was on Gabapentin and they clean swapped him and that may of been the cause of the regression and not the drug but he is back on Gabapentin again. He has problems remembering and concentrating and he was very moody but all that's kind of been better since we started supplimenting the deficiencies. I think don't know if it's him healing or the Gabapentin working better now the body is healthier. My son was on magnesium for ages too but we found a product called magnesium diosporal worked the best. Unfortunately I can only buy it through the naturopath and haven't found another supplier so it's quite expensive .

  • 1 1/2 hours outside of Toronto in Ontario.

  • Hi Jessika I am just outside of Toronto as we'll in the Niagara area. Welcome!

  • I am the other way in Peterborough, but have family in Grimsby :)