Have not been able to sleep again Just browsing the internet in an attempt to... — Australia New Zealand Cluster Headache Support

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  • Have you tried Maxalt? Knocked me stupid for a couple of hours but aborted the attack. I'm new to this so don't really know much other than this worked for me on Friday and I haven't had an attack since I took the meds - have had shadowing all day today though.

  • Yep, Linda Francis, I have tried Maxalt and it did not do anything for me at all! Plus: it has a disgusting mint taste... The only thing that helps a little is naratriptans or sumatriptans combined with two other painkillers. This only gives me relief for a couple of hours. Right now, no migraines or clusters but a rather long episode of TN...

  • Margo Lecompte that's dreadful. I hope get some relief soon.

Had my second meeting with dr rozan today I test positive for CMV post... — New Daily Persistent Headache

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  • Thank you for sharing your experiences. Since May, what number do you usually average?

  • Xxxxxxx Yzzzzzz I went back in December for another follow up. I would say on average I'm 2-3. Prior I was 7-9. There are flares though, that peak weather shifts and barometric pressure drops low and I feel effect which shoots me up to a 9-10. We are considering a guided spinal tap in the summer. He believes my NDPH was a perfect storm of a virus, vasospasm and response to high elevation. There's so many components to work out but I'm able to function more this year compared to the three years prior.

  • I'm so happy for you! 3-4 years is a long time to suffer!

Anyone have any positives to add about propranolol Side affects are awful but... — UK Migraine Support And Advice Forum

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  • tried different beta blockers but sadly made me feel too ill and didnt help migraine xx

  • I'm terrible insomniac, so to start with they helped get me to sleep and were fab. No sleepy after effect daytime wise. After a fortnight they had no effect on my sleep, I wa back to lying awake contemplating the universe.

  • I wasn't happy with the side effects of Propranolol so I switched to Atenolol and that seems to have far fewer for me. I do have high blood pressure to begin with though due the amphetamines that I take for Narcolepsy :-/ Also, neither stops my 'monthly' migraine, but they seem to stop most of the ones in between!

Today is my daughter s ophthalmology appointment. She is currently on day 3 — Parent support forum of children teens suffering with migraines

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  • Xxxxxxx Yzzzzzz -thanks! It was hard for sure but we made it through! My daughter finally found an amazing migraine specialist and now I get so excited reading the posts and all the helpful comments!!! If my daughter didn't have so many other medical issues that keep me going I would be trying to help in much larger ways!!!

  • You are doing a great job managing this I'm sure! I just posted about being at Mayo and one thing they stressed was that this was this was a "journey" kind of thing. I found it very helpful to talk to the chronic pain therapist because it is a third party helping you develop a plan regarding what exactly do to that was something clear to follow when you get stressed and overwhelmed.

  • Thanks!!!! Oh how I wish there was a chronic pain therapist within driving distance!!!!

Last Saturday i had some organic mushrooms i was having 200 plus tn attacks a... — Australia New Zealand Cluster Headache Support

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  • Indeeeeeeeeeedddd brother

  • I went into remission the first time in the right side. But got it on the left 100 x worse so. If it lasts 24 hours to whenever im forever greatful

  • Whatever works

    Good for you.. I know of a few other remedies in the pipeline too..

Welcome to the newest member to get our newest member title Linda Francis — Australia New Zealand Cluster Headache Support

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  • I'm the opposite, the humidity here triggers mine, no shadow or anything since the cold has set in. Welcome Linda and I know you will find the support we all need at times here, these people are the best

  • Another Canberran! Sorry to see you here though :( I actually find the cold helps me, I get extremely hot when having a CH and like to go and "chill" outside in winter.

  • Welcome Linda Francis

Welcome Monica Merriell Rachel Howland Joseph Thomas and Heyworth ShellyToby — Official Migraine Support Forum

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  • Welcome to all the new family members! I am a part-time admin, as I work full-time and am down a lot with Migraines and Occipital headaches. Feel free to discuss anything you feel is relevant to how you are feeling, whether it is specifically a migraine, migraine-related issues and illnesses, medication and side effect questions. I, myself, fight several different battles that require different approaches. I have studied natural medicine and herbalism most of my life, and currently do research on pharmaceuticals (how they interact with each other and with natural treatments). I'm willing to field any questions you might have on those subjects!

  • U forgot me, Mike! Thats ok!

So i had a nerve block done a few days ago and im showing signs of infection so... — UK Migraine Support And Advice Forum

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  • Apparently its just the infection. Oh the joys xxx thanks for responding xx

  • I thought it might be. Not fun as if nerve blocks are not enough. I hope your nerve block helps. I had that then facet joint injections and then surgery. Unfortunately none has helped. Xx

  • I find the radiofrequency pulsed treatment better but the waiting list is 2 months and he did this in clinic for me. I usually get limited relief but its better than nothing so hopefully its the same this time xxx

So part 1 refresher Prince Charles hospital northside Brisbane called me 10... — Australia New Zealand Cluster Headache Support

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  • Joe, think this might be a case of not advising Medicare of address change.. all computer these days. 'I forgot' doesn't work these days ;)

  • Medicare's advised as we had to do it for putting my kid on my card.

  • Then neuro has no excuse.. your current address was on computer.

Has anyone else here no longer able to drive I haven t been able to drive... — New Daily Persistent Headache

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  • Sorry. I hope you get some relief soon!

    I've been having some hormonal problems that's been causing increased pain the past few weeks but I'm hoping it will go back down soon.

  • I developed seizures as a result of DPH, or perhaps, some of the crappy drugs the doctors gave me and I didn't drive for over a year, until another doctor found a drug to prevent the seizures. So I can generally drive, provided I remember to take my anti-seizure meds.

  • Yikes that's scary. Glad you've found meds that work. I was tested for epilepsy due to frequent auras but whenever they've tested the damn auras went into hiding so we're not 100% certain that I'm not having seizures. Very frustrating.

    Thank you for your input!

One of my selfish wishes is for every living person to have ONE single CH... — Cluster Headaches Exposed

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  • Half of my family and friends think I am a liar and a serious recreational drug user. Some of them even work in Mental Health, NHS and in counselling. That hurts worse than the attacks at times. Sad indeed but move on from it and take the positive people with you and leave the ignorant ones behind. They will learn when they are older and have health issues, I try to rise above it but I can't imagine I will have much sympathy for them when it happens. Rant over, positive thoughts :)

  • Hear hear

  • though i wouldn't wish them on my worst enemy i agree that the lack of understanding and having the word headache attached to it makes it difficult for anyone to understand it (except those who have to watch you go through the pain) then they say things like have you tried . . . or my mom had those once, or my cousin has migraines. i often i say i'd kill for a migraine. so i may be on board with your wishes. then they'd understand that i am not a strung out heroin addict and just because the initial attack is over that i am still not ok. can take up to three days to physically recover from just one attack.

Has anybody tried kratom for migraines They make energy drinks with it but I... — Official Migraine Support Forum

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  • There must be a reason it was banned. Does it cause harm to the body? I don't want to add to my list of issues!

  • No. It's a natural pain reliever. Google it. It's a plant extract. It's only dangerous if paired with certain other substances. We just have an idiot for a governor. His approval ratings plummeted this past year. Especially with stupid stuff like this.

  • I'm in Bowling Green, KY and we have a few convenience stores that sell Kratom as a liquid concentrate (nasty) and dried herb capsules. When I take two of the capsules at night, I do notice that I don't have as much breakthrough pain as I normally would, but, as Tess mentioned, you have to research any interaction that Kratom could have with other medicines or herbals you take, as well as any conditions you have that would prevent you from taking it safely. It has been around for thousands of years. The people of SE Asia chew the raw leaves for pain relief. The Drug Enforcement Administration lists kratom as a drug of concern. Kratom has stimulant effects in low doses and sedative effects in high doses, according to the DEA. Certain ingredients in kratom bind to opioid receptors in the brain. Some advocates of kratom products say they can be an alternative to addictive painkillers. They want us all to stay on the pharmaceuticals, so, of course, they are going to try to ban it, or at least regulate it, so they can make more money from it.

I got banned from the bookies yesterday because I started having a ch so I... — Cluster Headaches Exposed

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  • the very first post if you read it will make you understand what this post is about,i never said( an online gambling site have anything to do with CH)I first said i was kicked out the bookies for having a sumatriptain injectiopn!

  • Tim how is it going with the melatonin has it helped?

  • Thanks for the clarification. While I understand your first post, I didn't understand the posted link relation to it. Personally, I would not air my beef with them using online chat. Assuming you have a prescription for the sumatriptan, what they did s probably illegal and I would see a lawyer about it.

Has anyone else experienced migraines that get worse pounding when you sit or... — Migraine Chat Room

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  • I think so.




    Fai nt



    There are times when I experience it during sex, as well. Or I end up with a raging headache/migraine after sex. That started back in 2007/2008 or so.. It's not all the time - THANK GOD!!!

  • I can't have sex, exercise or poop when I have a migraine. I can't strain at ALL. Yard work and leaning down are all no-no's

  • I get a mild starting migraine after intense, good sex, but it usually fades. I can't have orgasms during migraine times - ouch!

I spoke to my pharmacist today who suffers with migraines they have been... — Migraine Chat Room

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  • I had about 3 rounds of it I thought it helped a little for a short time

  • My experience has been that it helps calm your body and promotes a general feeling of balance. So that may help keep the migraines from getting out of control but it didn't keep them away. I invested in 4 months 2x week.... With a good practitioner. Let couple years go by and seeing another good acupuncturist and getting similar results so needless to say, I'm not going often!

  • I tried it for about 6 months and it didn't make a blind bit of difference, apart from the bank balance was noticeably smaller

I am due my 1st Botox on 24th June and as it is over an hours drive away down... — Botox for Migraine support information

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  • I always feel tired so I tend to take someone with me so that they can drive home. So if you're the passenger in sure you'll be fine x

  • That's reassuring. It's good to hear from people for whom the Botox is ok. I suspect, like all of us, the awful experiences we read on here are in the minority but those are the people who need the support this group offers. Let's hope I won't be among the number! Cottage booked last night!

  • With anything medical or otherwise we always hear the horror stories and not the positive ones. Have a great time Lesley, relax, unwind and don't worry xx

Had my second round of botox this morning and this time the pain was much worse... — Botox for Migraine support information

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  • It's hard to do things like that when you feel rotten

  • My worse was the third and honestly I think it was because I'd woke up with migraine the previous 2 days .... It was sore for at least two weeks after as well .... And my mum said she could see bruises on the sore bits .... I asked my Botox nurse why it hurt so much and she said if I'd had migraine then the muscles would have been tense and that was the reason xxx

  • Funny enough before I was called into the room I said to my husband that I had a stinking headache

Went to the drs today an he gave me nasal sumatripan i wanted to no if anyone... — UK Migraine Support And Advice Forum

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  • I take it and it's a lot better than the tablets works much quicker however you do have to take at the start. If you take it once you have a full blown migraine it won't work.

  • Also I take it then have a sleep for a bit!

  • Okay thank you hun, i was abit scared to try it with taken the propanol but dr was saying just take it xxx

Hello my friends. Hubby has been taken to hospital again — Australia New Zealand Cluster Headache Support

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  • I feel like it's a bit early for you to say nothing works for your TN. There are a heap of drugs out there for TN which have more effect on brain activity but sometimes doctors are averse to giving drugs which can affect your ability to function in society for a while (lithium, seroquel, topamax etc). There's also dihydroergotamine IV options and if lyrica isn't helping you can increase the dose massively (900mg/day or more is known for TN) or change to gabapentin and do the same. If it turns out to be atypical CH they can vanish just as fast as they turned up... so hang in there hon. You're not out of options and if it's TN there's always the MVD option.

  • I'm not gonna be the only person thinking it but if it's a primary headache disorder then lay off the Panadol, Neurofen and opiates as the physical addiction to opioids isn't worth the tiny amount of relief they give. They're great for other things but a poor choice for CH/TN.

    Has your husband tried downing a 500ml red bull when he feels an attack starting? Does it help/hinder/change anything?

  • Well, after 8 years... Sure do hope it will finally 'vanish', as you say. That would be a sheer miracle! And the neuro said that surgery is not a good option for type 2 TN... He wants to do an SPG block next week and has prescribed anti-seizure meds and a statin. Thanks, John Hancock, thanks for your support. I know I need to remain hopeful and positive but it only seems to be getting worse...

So i had dr appt yesterday at diamond Last visit dr decided to take me off all... — New Daily Persistent Headache

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  • Listen to talk radio or a pod cast. Go to you tube and see if your interested in any of the audio books they have. Good luck with surviving the boredom hope something good comes from your stay

  • Was released from the Inpatient program from Diamond on saturday. All new meds to try and get use to. I didnt get many new tests, but they did check my hearing seems i've been having constant ringing in ears for awhile. Figures that came back normal. Was hoping they would do some tests on balance and such as that has been getting worse as time goes by. Been home for 2 days now and still on the couch, fighting being lazy as i want to go do something, but my head is not allowing me too. Started mowing the lawn as no one in my house will do it, so a half hour job is going to take all day long. atleast the kids know to be quiet and go play outside when i'm down.

Is migard frova any good for treating CCH. I ve just been given a script — Cluster Headaches Exposed

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  • Sorry It didn't help you Sharon. This treatment is awful, what works for one doesn't work for another. I've heard pros and cons for it. I just don't know. If I do try it I'll have to try and be open minded about it and see what happens. But I certainly don't want to end up with more awful side effects.

  • The doctor said I could take 2 in 24 hours, Graham, and not to exceed that. I haven''t, but I had to take 2. The 2nd one was in the early hours of the morning. I can't struggle with it at night.

  • if only they would approve a treatment manufactured just for ch like barium lsd instead of having to try drugs developed for other conditions

Going to see neurologist for the first time today don t know what to expect — UK Migraine Support And Advice Forum

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  • Hopefully someone on this page has heard of the device!?!?

  • Oof sounds a bit like torture to me..! Not heard of it though, maybe it's worth speaking to someone in Holland?

  • Been on topiramate for over 2 months and free from daily migraines for 3 weeks now still get odd headache but can cope with that had this since 12 years old now 44 tried many meds over years so far so good but most meds I've tried only last a few years then wear off then back to the drawing board so I'm just enjoying the freedom at the moment.. Am suffering awful anxiety at the moment not sure if related but been referral to mental health team for full assessment

Thank you for welcoming me to the group I have suffered from ch since I was... — Cluster Headaches Exposed

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  • on a side note. do you have any idea what your current D3 levels are? D3 between 80 and 100 on a blood test is proving to be a great preventative. I"m taking that too and getting my levels up. might be something for you to think about, just to make sure these suckers do not show up in your life again. are you familiar with the ClustereBusters website? they have a wealth of information about all of this.

  • Xxxxxxx Yzzzzzz yes it was the second website I found on ch (the first being clusterheadaches. com). I still refer people to it often.I'll read up on D3. I have my latest blood tests at home and will check later today. one thing that might be connected, but not sure, is that I started taking vitamin B-complex with vitamin

    C, a multivitamin pill, and omega 3 fish oil pills, daily. Since taking all these daily the last three years, I haven't had a recurrence. Wouldn't that be awesome if ridding ourselves of CH was as simple as getting proper vitamins in our bodies. However, it's probably just coincidental, at least there is no research that I am aware of. but I will read up on the vitamin D3 thing. thanks for the tip.

  • I'm thinking there may not be any coincidence. There may be a lot more to this vitamin/antioxidant thing that we've realized. we are not going to get guidance from doctors about it because they aren't taught anything about it, AND pharmacy companies would rather prescribe stuff we pay a lot for that recommend vitamins. There is a new vitamin combination called "Batch" on the ClusterBuster site that has some of the stuff you've been taking. people seem to be getting good results from that also. I know that the Kudzu reduces nitric oxide in the blood and CH people have a high level of that. It also is a vasodilator (which is what Verapamil and the heart damaging side effects it has) is prescribed to us for. as for the D3, from what I read, you're fine if you keep your levels under 150. after that it makes too much calcium get absorbed into your bones and that's bad for some reason.

Is there any difference between SPG blocks and MiRx or is it the exact same... — New Daily Persistent Headache

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  • Here is and excerpt from the mirx website.....

    "For years scientists have known that migraine, headache and facial pain is controlled by a nerve cluster called the Sphenopalatine Ganglion (SPG) located in a difficult to reach area of the nasal cavity. The challenge has been, how to get medication or a topical anesthetic to the SPG to provide immediate headache relief without painful treatments or even invasive surgery. With the MiRx Protocol, the solution is as simple as a nasal spray. The procedure isn't painful and take seconds."

    Here is from another website for headache treatments on the spg block

    ". In a SPG block, an anesthetic agent is administered to the collection of nerves in the ganglion. The least invasive way to access the SPG is through the nose. The procedure is done in the office or clinic. The patient is instructed to lie on his/her back with the head tilted back and to the side (usually of the pain). A nasal anesthetic spray may be given beforehand to lessen any discomfort during the procedure. Then, a small applicator or catheter is inserted through the nostril to the very back of the nasal cavity. An anesthetic agent applied using a cotton swab or catheter drips onto the back of the nasal cavity, is absorbed through the bone and into the SPG, and is left there for up to 30 minutes. "

Guess what my hubby bought me today. from ALDI — Australia New Zealand Cluster Headache Support

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  • :-D Pun intended of course.

  • I thought they caused back ache! Oh, it's a wheat bag. Those trigger my headaches unfortunately!

  • Not sure whether it's going to do anything for me either, to be honest but it's the gesture that counts!