Hi everyone

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  • I am from the USA so I can't recommend anyone... But I just want you to know you're not alone. You CAN get through this. You CAN be strong. You CAN be your own advocate. It's hard and discouraging but we are with you.

  • Thank you so so much Kristen Hillyer... The feeling of being alone is awful and I'm not coping so well at the moment! I started seeing a new neurologist in December who sought a second opinion about my 'complex' and 'perplexing' condition. Then I was diagnosed with only botox as current treatment and it's not helping - the daily pain has gotten much worse over the last 2-3 months. I am confused about my diagnosis as I have other symptoms like severe dizziness and sensitivity to smells.

    How are you going? Who do you see in the US?

    I hope someone from Australia responds to this post!!

  • Dr Jacques Joubert in Melbourne is amazing. Cured my headache.

  • Kara where about are you? I am in Langwarrin. I found a lovely group of specialists in Kew but they work out if other places too. The best thing about them is they all consult with each. My neurologist is Ann French. Precision brain and pain centre. I hope this helps. I found Ann to be very understanding and willing to try things.

  • Hi Donna can I ask how he cured them please.

  • Oh my dear. I am so sorry. Sorry that you have dizziness and sensitivity to smells along with the headache. I get bouts of vertigo/dizziness about once a month and it's just miserable. I see a neurologist in my town but he's basically useless. He gives me Botox every 12 weeks which I think helps decrease the amount of higher intentsity headaches I have but does nothing for the constant lower grade I've had for 7 years straight. Other than Botox, my neurologist doesn't know what to do with me. I'm hoping to go to the Stanford Headache clinic at some point. Because you have sensitivity to smells I would recommend you research the Dynamic Neural Retraining System.

  • I've just been googling him as I found some online forums that spoke about him.. Thanks so much Donna Halton. I don't actually have a referral but I'll get one!

  • Also.. my parents met in Austrailia :). Still married 46 years later.

  • Hi Caroline, I am in South Melbourne... I have to be honest with you - Ann is the neurologist who gave me my diagnosis. She is so so lovely and I don't want to give up on her, but I need to also help myself as her treatments haven't helped me so far.. that's why I just joined this group to seek out help! Please don't tell her! How long have you had this and what treatment has helped you? I just figure there has to be a life beyond this severe pain every day! My headaches are more migrainous and movement makes them worse - hence my total confusion with the diagnosis!!

  • You can pm me if you prefer

  • Hi Caroline Anderson,

    This is the treatment I was on, further details can be found in my previous posts, just search my name in the group search bar to find them. treatment lasted 6 months, 2 years later and whilst i still get headaches more often than normal, the respond to normal analgesics. I also occasionally get migraines as well, but nothing close to the 5 years of pre treatment NDPH i dealt with

    Taken every single day i was on:

    sandomigran- 0.5mg in the morning, 1mg (2 tablets) at night

    sodium valproate-200mg morning, 400mg (2 tablets) night

    endep (amitriptyline)- 10mg night

    nexium- 20mg once a day.

    In terms of anti inflammatories i cycled through a few (its different if its done in hospital i think, but im not sure how)

    i started on a dexamethasone injections, 4mg, twice a day for 2 days

    then off that and onto prednisolone, 75mg a day for 3 days

    then off that and onto toradol injections, 30mg, 3 times a day for three days, and then off toradol and onto slow release naproxen 1000mg once a day every day until the treatment is over.

  • I have had NDPH fir 7 years 3 months and 9 days. I have tried lots of different meds which none have helped. Nerve blocks, dhe infusion, Botox, trial nerve stimulator and I have just had a ketamine infusion. I also tried doxycycline for 3 months but didn't work. The ketamine has lowered the intensity of my headache and changed the pattern of them. Also I have just been to a biomedical doctor who has diagnosed me with pyrrole disorder and the MTHFR gene. Still don't really understand that yet but that's another story.

    With the Botox I wish I had have had 3 lots rather then 2 as I have now read that you really need to have it 3 times to see if it works.

    I totally understand your frustration and not sure where to go to next as I am tired of being like this all the time.

  • Thanks Donna that is really helpful. I am so pleased that you found something that worked for you. It's so hard to get a doctor that understands.

  • Prior to seeing him I didn't even have a diagnosis. I highly recommend seeing him. No harm in giving it a go, and he claims he can cure 80% of NDPH patients.

  • I think I will as the specialist I have been seeing said ketamine was my last option and I have done that now.

  • Oh my heart goes out to you. Thank you for replying. My neck kills and I've recently had PRF and second round of botox. I was in hospital under Ann's care in February/March and had a Lidnocaine infusion for a few days which seemed to help at first and then stopped!

    I have seen an integrative doctor for a long time and have pyrrole disorder - but that was diagnosed ten years ago - a long time before this condition started. You need to supplement with zinc and b6 as prescribed - but MTHFR gene can make supplementation difficult (I don't have that).

    I think my exhaustion with different diagnoses and this condition made me completely crash the last few weeks, so I understand.

  • I will too Caroline! I have been lying in bed all day in severe pain (and pre this condition I did not do this!) - hence my reaching out on FB - and I was searching online and he has the best reputation for dealing with this condition. Did Ann get you to see Dr Christina Sun Edelstein?

  • Thanks so much Donna! Does he have a caring bedside manner (I don't really care about this if he helps) but as you know, this whole thing is exhausting and effects your emotions.

  • It is exhausting my gp once said to me that unlike other people we have to force ourselves to do things which can be hard. I hope you find someone that can help.

  • Yes saw Christina too but I didn't find her that helpful.

  • I hope you do too

  • Me too!! I bawled my eyes out because she basically told me that there was no treatment.

  • Ahh, kind of? He's quite friendly, but very to the point. I really liked him, and he listened really well to me, joked around with my boyfriend and didn't beat around the bush. I much rather a straight forward doctor than a super kind doctor (I've been burned with doctors who seemed lovely, but didnt listen to me or acheive anything) I would have appreciated it if he gave us a bit more information about giving the injections but otherwise it was fine. I only saw him twice, once for the diagnosis and treatment plan, and second to make see how it was going and let me know how and when to come off the medications

  • Sorry I haven't written back!! I've been talking to some lovely ladies from Melbourne on here.. I hope you can find some more help too Kristen.. is dynamic NRS a little like biofeedback therapy?

  • That's very true (wanting a straight forward doctor)... that's amazing that you only had to see him twice after the hardship you went through!! You must have been exhausted!! Was the treatment regime hard (side effects?)... again you wouldn't care if it cured you!!

  • Thanks so much Donna.. you've given me some real hope!!

  • I hope you have some hope too Caroline

  • The side effects are quite hard. I'm really resistant to sedation, but I definitely found myself feeling like a zombie, especially in the first few weeks. I continued with uni, but probably should have just taken a break that semester because I did have some cognitive impairment and was sleeping a lot. I've heard of others on the treatment that pretty much just slept the whole time, so be aware of that. Otherwise I didn't have any side effects that I recall.

  • I asked because I'm not resistant to sedation - I'm already finding myself constantly exhausted! ....but if it has to be done for a better life, it has to be done!

  • I'm still amazed you only had to see him twice!

  • Xxxxxxx Yzzzzzz, no it's a program you do at home.

  • I'm in the u.s. I'm leaving for Ireland in seven weeks to try climate territory change this see if that will help I'm afraid to fly because I think my head will blow up but you're not alone.. the force is strong with you keep your head held high many many blessings

  • Do any other doctors follow Dr Joubert's protocol?

  • Xxxxxxx Yzzzzzz , you are in Australia. Can you help?

  • I'm not sure, and I'm not in a position to ask. Perhaps Kara Martini or Caroline Anderson can enquire when they see him

  • She is in Sydney and Kara is in Melbourne.

  • I'm still interested to know who treats the condition in Sydney. I was working in Sydney but have been back in Melbourne seeking support and treatment. ...so tips from Sydney won't go astray!

  • I'm in the US as well and can't recommend anyone of course, but just wanted to echo the other comments. It does feel incredibly lonely and it's so difficult for anyone to understand, even those closest to you. It's so much more than a "headache", it's like an assault on your entire body. My headache developed very suddenly on 12/21/15 in the middle of the night. I have had it ever since. I take multiple meds including Cymbalta, Nadolol and Maxalt. I don't know how much they actually help, but I'm afraid to be without them at this point. I'm so sorry and pray that you do find some relief!❤️

  • Thank you so much Amy! Your words are so beautiful and encouraging... I'm sorry you are going through this, but also happy something is helping a little bit? Xx