My neurologist scheduled me for the 3 day infusions starting on Feb 1st — New Daily Persistent Headache

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  • My birthday is Jan. 30th and my head pains birthday is Feb. 1st! Prayers, I hope an infusion is the answer for you!

  • First- bring music! My infusion treatments were three days of 8 hour sessions. While the drugs generally knocked me out, the music helped me relax.

    Secondly, if your treatments include the drugs that knock you out.. you'll prolly be drooling for a few days (I barely remember the week of the treatment sessions).

    They did help me out, but not enough for the doctor to continue with them (two weeks of 2/3 level pain instead of 6 weeks like they said it would last).

  • Honestly, I know he told me DHE and 2 other meds. I think a steroid. The conversation was a blur...my BP was 178/122 from pain & my docs won't refill my pain meds until I get a 2nd opinion at Cleveland clinic. They are doing infusions to "tide me over" Until the new doc assesses me. I don't understand their logic....hopefully I don't have a BP related stroke in the mean time if I have another bad migraine.

Hello everyone I m new here I wonder if any of you have migraines which don t... — Official Migraine Support Forum

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  • Sounds more like sinus issues causing a headache/migraine

  • Shamin, I've had sinus issues before, but this feels like a migraine spell. I will keep your idea in mind however. My spells seem to present with more neurological symptoms and the headache phase is often vague. Thanks for replying!

  • What you are experiencing sound like what is described in this article. If it doesn't seem to fit, on the second page, there is a list of other headache/migraine types. Sometimes, you just have to research and do some reading to find out. Go through those until you find something that fits: http://www.healthcentral.com/migraine/types-of-hea daches-38003-5.html

A few years ago my dr recommended that I read the book Chocolate and Vicodin — New Daily Persistent Headache

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  • My favourite book! Excellent read and very relatable.

  • I got that shortly after the pain began. I should read it again now 6 years later.

  • I was 1 year and 2 days in before I was diagnosed at my first appt at Carolina Headache Institute. He recommended it at that visit. He's met the author multiple times. Not sure if she's a patient or not.

Anyone who has gone to the ER for a migraine what do they usually do to help... — Official Migraine Support Forum

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  • It has been over ten years now, but mine were pretty extreme, (as I've found most people on these sites are). At my worst I would go blind, deaf, stop breathing, then go into seizures. At that time the docs would go with an anti seizure med (?), Thorazine and Morphine, plus I.V. fluids, once in a while they would also add O2 by nasal cannula. They would keep me there til I became more stable, then send me home. Of course I could not drive during these episodes, so I always had someone with me who knew my history and the medical routine ... especially for the new doc's that had no idea what was wrong with me and would "Fritz Out!".

  • Sounds like a doctor that i need.

  • Iv toradol and benadrly and something for nausea. Works great

For any of you that pray I would appreciate your prayers as we are currently... — Parent support forum of children teens suffering with migraines

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  • Migralief

    D3

    Calcium

    Manesium

    Some more herbal suggestions

  • My son has been doing AMAZING since being taken off of all prescriptions.He was on Gabapentin, Naratriptan and Zofran for years and before that Amitriptylene and Metroprolol. (He used to get 2-4 per week with vomiting and now has only had three since Thanksgiving - 1 with vomit) He now takes B2 and magnesium citrate twice a day - praying for your child to find some relief soon.

  • We are going through the same. Going on neurologist number 3 on Monday

New year new hope for a treatment that might cure my headache I m hitting it... — New Daily Persistent Headache

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  • You might be clenching at night while you sleep too.

  • I do. I wake up like that, even though it hurts.

  • I'm going to the headache clinic for botox so i assume they will do it in my jaw too. My orthodontist told me that i will need to where the bite splint 24/7 for 3 to 9 months and if it helps then braces will work. If it doesnt help then no point in wasting money on braces.

— Botox for Migraine support information

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  • She has a neurologist. She's tried sumatriptin, propranolol, torpirimate, gabapentine, indo, carbomazapine, lamotrogine, naproxine, nortriptaline,diclofenac. She has a background pain 24/7 for last 5 years and stabbing pain that comes and goes every day.

  • then she will be eligible unless you live in Scotland where its not part of the NHS treatments.

  • Oh that's sounding good then as we not in Scotland. Quick question. How painful are the injections?

I d like to introduce you to the fellow admins guys — Australia New Zealand Cluster Headache Support

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  • ^ that. From a personal perspective I'm wondering if your husbands cycles have had a particular structure to them, how and why you diagnosed him and who else he'd seen, and why you feel osteopathy was responsible for the ending of a cycle that is normally cyclic anyhow. But if that seems too intrusive, then can I just say "welcome!", and you are welcome here.

  • Xxxxxxx Yzzzzzz see my long post :-)

  • Hi all, I'm Abi's other half, she likes to talk LOL.

    John, I was episodic for around 10 years before I met Abi, my cycles would come (usually) once a year and last around 3 months (again usually) during spring. I'd have anywhere between a couple to a dozen attacks during these cycles. I had been to see many GP's, Physios etc about these weird migraine headaches - no one ever pick it up, I had no idea it was CH, never heard of it until shortly after we started dating I had an attack while she was staying over and afterwards Abi looked me in the eye and said "you have Cluster Headaches - I studied them at Uni, I'm so sorry".

    After Cranial Osteo treatment (which was REALLY FULL ON!) when I was in cycle, my cycle ended early and I didn't have another cycle for roughly 5 years after her treatment. So it didn't just end my cycle (much earlier than usual) it also stopped the cycles returning as they normally would every 12 months or so.

— Australia New Zealand Cluster Headache Support

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  • Welcome to the group Tanya, and glad you found us. How long has your husband been suffering from clusters? And how are you coping with his suffering?

    I'm certain you'll find help and support here - our members are a veritable trove of information and experience!

  • You are definitely in the right place then

  • he has been a sufferer for nearly 30 years at first the docs said it was migraine. but 2 years ago we found a wonderful neuro who finally said it was chronic migraine and clusterheadche at the same time he takes replax and we are trying botox for 2nd time this friday. the botox seems to be helping

So first annoying question from me. What exactly is a shadow . Thanks — Australia New Zealand Cluster Headache Support

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  • Wow, never had that.

  • To me, shadows feel like cigarette smoke in my eye, but deeper behind the eye. Its a burning sensation. I never really experienced shadows until i started the D3. My shadows are enough to wake me but depending on the severity, i am usually able to get back to sleep.

  • Thank you all so much x

Hey guys if you could spare a minute could you follow the link to my public... — Australia New Zealand Cluster Headache Support

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  • Thanks Dan, just watched Mitch's youtube on Dalt. One very interesting point that clicked for me was that some who take Dalt experience cold shivers. I've seen four different acupuncturists/Chinese herbalists during my journey with CH and each once of them has come up with the conclusion that the flow of energy in my body has a blockage. Meaning that the heat that flows around gets stuck in the upper part and doesn't go back down, therefore the build up of heat stays in my head and causes the problem. I've had bucket loads of Chinese herbs and acupuncture treatments which were expensive with ongoing appointments, sometimes it helped, sometimes not. Perhaps when the Dalt hits the receptor it releases all this built up heat and the shivers are a sign of this. Just a theory. Nearly detoxed and ready to begin my Dalt journey.

Hey all Just updating on my new LYRICA journey Well it s kind of sucking... — New Daily Persistent Headache

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  • I have similar issues with my medications. Between the Dr's office not submitting my paperwork to insurance, or to the pharmacy, or the pharmacy not doing their part by filling the script on time, ordering the medication in time. Etc. Even insurance losing or holding up things. Smh. I've had many issues. Even when I've called in advance to insure that things go well. It can be a real pain. People don't understand unless they've been in a similar situation. I do feel for you, we shouldn't have to go through so many hoops to obtain medication or medical treatments.

  • I take Lyrica or my fibro, although it started out being prescribed for my headache, and I didn't realize how much it had helped my fibro pain(since it had not helped my headache at all) until something went wrong at the pharmacy, it was after I had been taking it for at least a few months... Anyway my prescription ran out and they couldn't seem to get it filled and it took a whole week! I literally thought I was dying or something, the whole week I was in horrid pain, felt like the worst flu-achy was I had ever had and then some... Finally got my scrip, and felt completely better the next day, and I was amazed at how it was like night and day difference! Since then I have forgotten to take me meds in the morning or something similar, and thought I was getting sick or had overdone it (which is hard to do when you do nothing all day) but then later would realized I never took my meds! Lyrica is amazing for those who it works for, then there are also people like my mom who took it forever ago for her fibro and had whole days or nights or important things that she had no memory of, stopped taking it and was fine, swore it off forever... Lol... I hope once you get things all straightened out that it works well for you!!! :3 (P.S. Sorry for the choppy-ness of this paragraph, I have a cold and it is making me less functioning as usual)

  • I never did understand the need for a pre-authorization.. I have two medications that refill monthly and every month I'm two weeks late on receiving them because of this....

Heya family i haven t had much time to post anything but I m on a break at work... — Australia New Zealand Cluster Headache Support

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  • Lachlan I'll have some files added by Saturday mate you will find very helpful. Luke could you post the link to batches d3 thread in clusterheadaches.com with a photo of the supplement table? Maybe in the files section if you have the chance. Otherwise I'll do that tonight when I'm home. I got to run friends I'm late for work.. again

  • Dan I uploaded the doc and picture of the regime to the files section. Lachlan check out the Files section in this group to read up on D3. (y)

  • Love your work brother

Hey guys I m sorry have been quiet lately My man hasn t been hit this usual... — Australia New Zealand Cluster Headache Support

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  • No apology needed! We all have our 'normal' lives, filled with family, work, projects etc, and no one is going to hold it against you when you prioritise!

    I'm glad to hear your mum is stable!

  • Exactly what Alex said Cathy, You don't always have to be active within the group. Sending wishes for a speedy recovery for your mum.

  • Jeeez that's terrible, your poor mumma

Hey friends I am just popping in briefly to say hello and offer some... — Australia New Zealand Cluster Headache Support

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  • Well said and 100% agree Mitch. I can't see the same thing happening to this group. Not with dan in the drivers seat.

  • That's right Mitch. Thanks for supporting us. And constantly giving your time to help others.

  • Totally. Spot on.

Well hi there looks around tentatively That group was good because of the... — Australia New Zealand Cluster Headache Support

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  • I'm not active there but I am a primadonna.

    My 17 yr old is the CH sufferer but I'm the princess. Laughs are good too.

  • Laughter is the best medicine for sure, and I'm not saying we should have no interest in each other apart from CH.. just to try and avoid bringing personal garbage here that should not concern fellow members.. keep the focus on what the group is for.

  • I wasn't there long but did start to notice the tension - hence not posting or commenting often lately . I enjoy being part of a group on this side of the hemisphere . I look forward to this group and all everyone has to offer xxx

Hi all I m under the care of a neuro in Birmingham So far I ve tried all sorts... — Botox for Migraine support information

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  • I saw Jackie for a while but she referred me to Dr Sinclair x

  • Due to see Dr Sinclair on Monday and I know she wants to discuss botox with me. As she mentioned if last lot of meds didn't work then I would be an eligible candidate for it xx

  • She is very good. I'm currently using the Gammacore and just started Candesartan. Let's see how these meds go x

how s detox going in prep for the LSA experiment — Australia New Zealand Cluster Headache Support

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  • That's unreal Dan Bailey! Imagine that, they just buggered off forever! Thank you Dalt!

  • If anybody wants a sign of progress in the fight against CH, here it is. . .Dan is actually TRYING to bring his CH back, and can't do it! Hahahahahahaha!

  • Baaahaaaaa that just doesn't sound right haha. It's too early to tell right now Mitch but I'm feeling good mate

Evening all. What did I miss — Australia New Zealand Cluster Headache Support

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  • I dont know why people dont like me Michael. I reckon im pretty funny?! Lmao

  • Ooohhh so it was you who he threw a tantrum over? Im sorry...some children need a proper spanking for misbehaving (not you lol) you can be banished forever here with the rest of us crazies :)

  • Sorry just seen this comment now. Yeah it was me lol

Has anyone tried Cephaly I got a RX for it because why not Anyone tried it or... — New Daily Persistent Headache

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  • Can't. Because it is a medical device, it says in the cephaly booklet that federal law restricts its sale by or on the order of a physician.

  • I also think it might be of better use to migraine sufferers. It can be relaxing which is of some value. The nurse practitioner at Jefferson told me they were not receiving positive feedback from patients using it.

  • I have one and it didn't help me, but neither did the implanted stims. I'm a NDPH/ON/Chronic Migraine patient.

Hi everyone — New Daily Persistent Headache

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  • I've had multiple facet injections in my neck and they didn't help. I was told that it was because it wasn't the source of my pain. I had a few discograms done that revealed that was the source of the pain. Over time, this resulted in 3 surgeries and a 3 level fusion.

  • What surgeries did you have ? Did they help ?

  • I had an anterior discectomy and fusion of C6-7 with cadaver bone and a plate in 2008. An anterior disectomy and fusion of C4-5 & C5-6 with cages and plate removal of C6-7 in 2010. A posterior repair of C6-7 with a rod, bilateral enlarging of nerve root openings from C4-T1 and bone removal in 2011. Unfortunately, it had no impact on my headaches at all. I was told because the surgeries were too low in my neck to be the source of the headaches. Fast forward to 2015, I have neck pain that is now the result of the previous surgeries from scar tissue and what not. No further surgeries until something else presents. Although, I do believe the the upper levels are now compromised because of the surgeries and are causing me grief although MRI's don not indicate anything. I did need to have the surgeries and don't regret having them done. My pain is located in the surgery areas and not being referred to my arms and hand . I do have constant pain in one arm and hand that is probably the result of scar tissue in those areas.

— Cervicogenic Headache Support Forum

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  • Which time! The effective one was myofascial release on upper shoulders and back after nerve blocks on neck.

  • That is good it helped. What do you do for muscle tension spasm relief? Any use of medication, muscle cream, magnesium oil, turmeric, other herbal supplements, type of mint oil, daily stretch routine, epson salt bathes, any other helpful stuff?

  • Skelaxin and medical marijuana right now. Can't use NSAIDS. Yoga has been helpful in the past, too. Need to get back to it.

Feeling a bit gutted and can t stop crying David Bowie is one of my all time... — New Daily Persistent Headache

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  • I'm so sorry. I can understand. I listen to music constantly and have those select artists who I really lean on (some more so than others) when I'm feeling down and/or in tons of pain (my headache isn't effected by music or loud noises). I would be devastated when/if any of them died.

Just out of curiosity anyone have any favorite hobbies Are you able to with... — New Daily Persistent Headache

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  • I play on my phone and ipad, I like to listen to music and watch TV. I just started color an adult coloring book. I used to love reading but its really hard to do now with headache . I also used to love swimming and graphic design. I find coloring very relaxing. I got a 5 dollar adult coloring book at target . I used to cook all the time all kinds of things , but no so much anymore :\

  • I love gym classes and aerobics, which I can mostly do with my headache (depending on the day) but I can't with my other health problem, which I'm hoping to get improved this year would surgery.

    Also a mum to a 4 month old and I love taking him swimming, baby groups, the zoo ect. I'm not letting my headache affect him, he keeps me motivated! X

  • They are lots of fun :), mom and I like to color together too