For those who have flown with this how did you do — New Daily Persistent Headache

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  • I have no problems at all with flying and have done long haul for the past three years, I do use ear plugs though in case there are noisy passengers. X G

  • No problems here either.

  • My pain level normally spikes the day of/after flying, but the actual flight doesn't bother me.

I have been researching viral infections and noted Dan has had blood tests in... — Australia New Zealand Cluster Headache Support

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  • I love the hypothalamic pituitary adrenal axis...! I have explored this with patients with functional infertility.

  • It interests me very much also

  • Went into a hospital in qld when I was 16 having daily drips and vitamin d injection was better in about 6 months just had relapses for a couple of years after.

— New Daily Persistent Headache

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  • Carefully. I let them know about the illness and what happens. They ate understanding. Don't over push yourself. Cut your hours down if need be. And if your doctor can change some meds around to help you adjust to pain relief that's even better

  • My birthday is Jan. 30th, my head/face pains birthday is Feb. 1, 2014. Glenda, I'm wondering if you had any sort of event prior to your head pain? I had a surgery 4 months prior and tested positive for EBV & CMV, treating currently with Famcyclovier.

  • Hi Lyn, happy birthday for the 30th.

    I had flu about 2 months before it started. I'd also been going through a really stressful divorce but that had been going on between January 2005 and September 2012z apart from those, there was nothing. X G

My sister sells doterra oils and is obsessed so when someone in this group... — New Daily Persistent Headache

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  • Definitely be careful ingesting anything! My oil is pure frankincense and it is an edible resin.

  • Interesting your doctor said not to ingest it. It's been ingested in Africa and Asia for hundreds of years. :-)

  • That's because some are for "aromatherapy purposes only". And they only have to have 5% of the oil to be labeled as pure essential oil. You really have to do your research to make sure what you use is pure. And most doctors are not believers. But my pcp thinks i'm crazy for eating gluten free. Even though i have sister with celiac disease. So i dont put my complete trust in someone that only wants to fix problems with prescription medicine and balks at everything else.

— New Daily Persistent Headache

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  • diamox gives you brainfog and topamax gives you VERY UNWANTED SIDE EFFECTS.

  • I am where you are at, one neurologist says intracranial hypertension, the other says chronic migraine and they can't agree. So trying for a third headache specialist. Try getting in to a headache specialist .

  • Everyone tolerates meds differently. I recommend very slow titration on and off.

Thought this might be fun what is the most drastic things you have tried for... — New Daily Persistent Headache

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  • Acupuncture was a stretch for me. I would draw the line at worms!

  • I must admit I did eat the worm in the tequila bottle .... but that was in the 70's .... worm eating was the least of it!

  • Yeah, its kind of crazy, but I'm willing to try it if there's a chance it could work. https://en.m.wikipedia.org/wiki/Helminthic_therapy

Really strange question but does anyone know if ndph could be contagious — New Daily Persistent Headache

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  • I would suspect mold or other contaminants before a contagious illness.

  • The point is no one knows for sure so VirScan would be really beneficial as it will hopefully be affordable and test for all known viruses past and present.

  • It is most likely not even an outside cause, like a virus or mold. NDPH seems to act more like an autoimmune disease. Of course, even then, there can be triggers.

Anyone read all in my head by paula kamen. My dr recommend I read it — New Daily Persistent Headache

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  • Not sure if I want to read something depressing. I feel this group is most of the support I seek/need. The beauty of sharing common experiences is immensely validating and reassuring even of there is no cure...yet. ;)

  • Thank you everyone , I'm not sure I want to read it now. I did buy the sample of the book so maybe I will read that and see if I really want to read them or not

  • I checked the reviews for All in My Head and I'm gonna get a used copy.

Beer test — Australia New Zealand Cluster Headache Support

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  • Sadly had a small visit during the night :( .. no declaration.. after all that feel like an idiot now.

  • Shit man that sucks! Mate don't feel like an idiot we have all thought the same thing many times over. It will come for you brother.

  • This sucks

Hi I had my 4th Botox 14 days ago This time I didn t get any reaction or pain... — Botox for Migraine support information

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  • That's great Lill. I've only had 1 round of Botox and after a rocky start with side effects had 12 migraine free days but am now back to square one and again daily Chronic. Did this happen to you and did you see improvement with the more Botox you had

    I'm feeling despondent but will continue with it. I also have HC and can't say I've noticed a massive improvement with that. I'm very pleased for you

    It must feel like you've got your life back. May it continue xx

  • After my first botox I was a bit dissapointed, it didn't work as good as I hoped. The first two weeks and the last two was terrible. With strong pain and migraine every day. I get botox every third month.

    I hope you will give it a change, AS it can get better!

    My HC is not getting better from botox, but it takes away migraine and pain is easier to cope with, than migraine every day. I do yoga, get a massage every week, and tak Indo. I still have pain every day, but it is bareable.

Kuj Brklyn asked if anyone in this group has successfully eliminated their... — New Daily Persistent Headache

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  • Chris, this is the magnesium supplement I have found most tolerable and effective. I find the therapeutic effect is fast. I had been taking one capsule for quite some time and recently when I noticed my head starting an amped up cycle I increase to 2 capsules at bedtime (which is recommended dose) and the next morning I noticed improvement.

  • Excellent article Chris, good post. Electrolytes can be very confusing, difficult to comprehend the difference and significance of lab values.

  • Thanks Lyn I'll consult Amazon, ha!

Sent a letter to the AMA today asking if they have a policy in place regarding... — Australia New Zealand Cluster Headache Support

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  • Exactly, what a waste... Or blow my house up

  • Having said O2 is harmless, I would compare it to the vast array of drug treatments offered by the medical profession instead, ALL of which there are countless reports of side effects, warnings and bodily or psychological damage recorded. That the medical profession can say that such treatments are preferable to O2 because of 'health concerns' is absurd.

  • You'd be hard pressed to find a GP who actually thinks outside their comfort zone. From my encounters, most are muppets when it comes to CH and have an inflated ego and closed ears.

Had my appointment today The specialist believes I may not actually have... — Australia New Zealand Cluster Headache Support

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  • Yeah? I stand corrected. Still wouldn't consider myself John.. would have to have one in my eyeball for a start haha.

  • Xxxxxxx Yzzzzzz I figured I'd admit it has helped enough that I'm going back. Despite a week to ten day botox headache, which was no fun.

  • David i was referring to the people who ive seen time and time again supporting other's and they are all here now :)

When I was diagnosed with CH my doc unfortunately left soon after to have a... — Australia New Zealand Cluster Headache Support

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  • I've had them before i was diagnosed along with periactin.

  • My pattern changes with each cycle, and I think it has a lot to do with my sleeping pattern too. Lately I've been getting 1-2 attacks per day, a small one in the afternoon and a big hit around 6pm, lasting on and off until about 9-9:30am. Then it's just shadows until afternoon again. It seems to build up to one or two days of full on agony, then leaves for a week or so. This new pain that happens when I stand up is totally different to anything before.

  • That is really not typical of CH and probably why your GP doesn't think O2 would be worth the investment.. maybe he's right about giving ambos O2 a try first, but they might object to being used for 'experiment' lol, only one way to find out eh?

Hi James Maguire and thanks for joining us in our new home I know you ve known... — Australia New Zealand Cluster Headache Support

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  • Xxxxxxx Yzzzzzz if you get the opportunity to meet another cluster head i can tell you from experience it is the most amazing thing. Keep us updated on your progress with your treatment plan if you don't mind and have a look through the files section there is some interesting information in there.

  • You know Dan, in spite of being a contributing member (off and on) in various CH support groups and networks over the years, I have never bumped into another CH face-to-face in my life.

  • I have met 4 Cluster heads now David and each meeting has been amazing. There is something that sticks with me from each experience and that is, it is hard to describe, I guess I describe it as the 'knowing' that we have for what it is we experience however different our upbringing or general lives are, and every one of those people all have a depth in their eyes, a depth of pain experienced but also a depth of fight and courage not to give in to this disease we share. They are moments I will never forget.

Lets extend a warm welcome to our newest member Tina McMaster — Australia New Zealand Cluster Headache Support

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  • what kind of alternatives if you don't mind me asking? As Drs told Lachlan that smoking would tigger them but it's the complete opposite they actually help and so do other things

  • yes Lachlan was on prednisone and it done the same thing to him and also caused him to put on a hell of a lot of weight. And the verapamil was the one that burnt through his stomach and caused his stomach to bleed which also now a re accuring medical condition aswell. It has stopped him from been able to eat a lot of foods he normally loves and also if he drinks alcohol he pays for it for days after. We have also found that anything bbq flavoured triggers his headache. Do u have any foods etc that trigger them?

  • Xxxxxxx YzzzzzzMaster take a look in the files section find the video treating cluster headaches with psychedelics and the video cluster headaches and citizen science watch them. A lot of us use these alternatives successfully including myself.

Anyone test positive for Epstein Barr virus Any neuro ever make a connection... — New Daily Persistent Headache

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  • Hi Jennifer Sheets I didnt see this message until today, I am sorry! Did you get that appointment with dr Rozen? I just call and make the appointment with no problem at all

  • I did, thanks! I had to push it out to April tho because of my class schedule but at least it's booked. Thank you, Gigi Canahuati !

  • Xxxxxxx Yzzzzzz so happy Jennifer! I will go on march 15 to see him.

Thanks for the join I was wondering what peoples experience of Pizotifen is — UK Migraine Support And Advice Forum

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  • I've just been prescribed this after propranolol not helping and amytriptaline working initially then not... I'm really worried about the weight gain, plus if I feel anymore knackered then I do already I'm not sure how I'd cope. I have three young children and I'm finding it so debilitating at the moment.

  • I decided not to take it and just try pain management. Am not finding many of the preventative meds are doing much for me and the side effects are horrific for me. I also need to function and be a mum x

  • Difficult isn't it? But I was having so many migraines a month that made me unable to care for my kids that I've had to try something. I didn't realise how scary migraines could be.

Has anyone been diagnosed with optic nerve slowing One of my recent tests... — New Daily Persistent Headache

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  • This is going to be long and I will try my best to describe all that's been going on with my vision but it's kind of difficult to explain.

    About six months before the headache started my vision started to change. I'm normally near sighted but started having spells where I could see things better farther away and having slight difficulty with things close up. I thought it was a change due to age at first and not related to the ndph. Now I think it was a sign that I was getting sick.

    Since the headache has started I've had severe problems with my peripheral vision. I will walk into a wall when turning a corner due to the doorway not being where I see it. I've knocked over more glasses in the last two and half years than the rest of my life combined because the glass is not where I see it. I also overfill glasses cause I can't gage the depth.

    I've had a couple of really weird episodes in particular. One night I woke up and the clock that is ten feet to the side looked like it was at the bottom of my feet and brighter than normal. Stayed this way for not quite a half hour then suddenly jumped back to across the room where it should have been. Then the last time I was in the hospital my door room flipped it self upside down. Everything around the door was was upright but wavy distorted. Again about thirty minutes then flipped upright again. Several months after that I started having bouts of double vision that come and go.

    I haven't been able to drive since the onset of ndph since it would be like driving drunk.

    My regular neuro is having me see a specialist neuro ophthalmologist. They've run several tests and so far the results do indicate there being something tangibly wrong. I've seen some of the results but haven't spoken to the specialist yet to get a better understanding. They did say it may be medication related but aren't certain.

    Also they redid my mri and there are some changes between the first one. My neuro said that it was structural changes due to constant pain. This has really bothered and scared me.

    Sorry for the long post but I didn't want to leave anything out.

  • I've had pallinopsia since my headache started. Its extreme and happens with any contrasting colors that i look at. I've also had some hallucinations in the middle of the night that i'm certain were not dreams. I could see them with my eyes open and shut. This has only happened a few times.

  • Are you on tizandine? Or have blood pressure problems?

Hello all — New Daily Persistent Headache

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  • When I was 15 and so just remember you aren't alone.

  • 27 years old here, onset at 14. I hear you!! <3

  • Sorry to welcome you to the club, but this is a great group. I'm a 23 year veteran and until last year, never met anyone with this kind of headache.

Really minor point of admin — Australia New Zealand Cluster Headache Support

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  • I'd like to agree to some extent but I know that sometimes the worst days are the days people need most support. It is good practice for us to recognise high pain days and how our moods change when we're stressed or getting smashed by a bad hit, and check over our interactions the next day and/or be open to accepting feedback, being wrong about things and occasionally even apologising for stuff.

  • too much in the last week I have seen people attack others for having a bad day and don't take responsibility for their own actions, rather more blame the fact they had a Ch and that was that (aimed at no one here just to clarify). Sometimes its better to take a step back and breathe before things get too bad...but yes I am all for having support on a bad ch day, just not mood wise when they can snap if you say hello.

  • And less dissolving people in bathtubs presumably!

created a doc in the group: Australia New Zealand Cluster Headache Support. — Australia New Zealand Cluster Headache Support

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  • Xxxxxxx Yzzzzzz

  • Xxxxxxx Yzzzzzz

  • We have found that when the effectiveness drops off, it does so very quickly.

    It is also reported that when properly stored, synthetic tryptamines will last many years.

    5-meo-dalt is such a new treatment that we just don't have experience on long term storage.

    However, we have seen pre-made capsules loose effect after 3 - 4 months. We have seen batches purchased or manufactured before 12/2014 loose effect. I suspect this is due to repeated exposure to air, light, and moisture.

    It makes sense to take a small portion of your supply to make caps a few at a time leaving the rest undisturbed.

created a doc in the group: Australia New Zealand Cluster Headache Support. — Australia New Zealand Cluster Headache Support

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  • hope your pain will ease off soon,

  • Haha

  • Thank you. Have had a few days without after starting verapamil but started back again 1 - 2 a day last 4 days xx got better now at coping and a lot better now I'm finding a wealth of info about CH :) hope you get some sleep yourself soon ;)

Hi everyone I m currently working on locally relevant information for cluster... — Australia New Zealand Cluster Headache Support

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  • Hi Elizabeta Hudec-Bursac :) verapamil is a blood pressure medication. Don't ask me how it works for clusters though, I believe it opens the blood vessels and creates better blood flow?? All I know is it helped me dramatically so I didn't ask questions lol! I do know my blood pressure dropped a lot when I went on it and I did get really tired but for me I'd rather be tired and pain free the in agony with clusters. I was taking 540mg per day before I found it worked for me. Started off on low dose and worked my way up until I got relief xx

  • Thank you so much! Dr just mentioned verapamil is often prescribed for heart but helps with headache! I also didn't ask many questions thinking just give me whatever to help this terrible pain in my head!

  • Lea Perrin, a lot depends on your individual makeup and how much of the substance you use. Some folk are really robust and can tolerate a lot, others less so. its also important to pay attention to recomended dosage etc. I read on another board about a guy who had horrible complications from prednisone, then I found out he had been on it, continuously, for more than two years. That's just nuts, two weeks seems to be a safe limit.