i had three or four days where i had extreme attcks but breif ones hit everyday... — Cluster Headaches Exposed

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  • I always inclood coffee in my daily diet,the caffine helps to keep me awake in the day so hopefully the melatonin works better on the night

  • Can of monster for breakfast one for lunch

    Coffee throughout

    Keeping highly caffinated helps keep it at bay I've found

  • i am the biggest coffee drinker i know, and energy drink remind me of cough syrup. i have tried them but to no avail. my sleep cycles is currently screwed all to beat heck with no hopes of normalizing any time soon.

Any other MHNI patients on here. Just curious — New Daily Persistent Headache

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  • I go to school in Holland, looks like we actually have some mutual friends!

  • It's called CSF Leaks (cerebrospinal fluid leaks). There's a public and private group. You guys want the private. Just request and they'll add you very quickly. Their file section is amazing. They also have lists of Dr's who actually understand Csf leaks and other Csf pressure issues. Nicholas J. just ask about the Michigan headache clinic and people will tell you their experiences.

  • Used to be. From 2007-2009. Two inpatient stays.

So I have suffered with migraines and headaches for nearly 5 years now been... — UK Migraine Support And Advice Forum

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  • I am 21 myself been having botox for about a year you have to have a so many headaches and migrane to get the funding for it on the NHS x

  • Ah okay :) Yeah I've had them for 10 years but its only the past year- 2 years I've actually been in the nurology Department at the hospital and not just the GP. They've been diagnosed as chronic and I've tried a lot of medication over the years. So I get two migraine free weeks every two months or so, which sucks. Right now I go to the chiropractor once a week and go to acupuncture just to try and get by but I really need to try something else. Got an appointment in August but the GPs trying to bring it forward for me to hopefully I can discuss my options with them.

  • I had acupuncture but don't feel like that helped when I went to the neurologist the botox was my last thing to try just push then they don't want to give it out to people that much as it is expensive but once you have had the first lot it's easy to get more just have to fill out headache diary sheets try do theses now if u can to show them how many you are having x

I want something to fix me for real Right now I m taking long acting narcotics... — Cervicogenic Headache Support Forum

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  • I am on muscle relaxers and nerve pills also. Just took time to find the right combination for me.

  • I just started going to MHNI and was diagnosed with CHA. They are wonderful doctors and very compassionate. I went there after my neurologist told me there wasn't anything else to try for my chronic daily migraines. It was MHNI who discovered that I had two different types of head pain. I finally have hope for relief.

  • Yay for you!!! Glad you checked it out!

I am excited to start trying some more alternative treatments for my headaches — Australia New Zealand Cluster Headache Support

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  • I use doTerra essentiols n creams n vit D is great also include magnesium n melatonin for sleep..all these are part of my go to pack including a heat bag n freeza coola block along wiv otha odds n ends that are useful to me..otha people have different needs so good to try n if its successful or gives sum relief then make yr own go to kit..also have migrastik in mine..or use peppermint oil which i dilute with coconut oil n use this all ova my head neck temples n the daf spot in yr ears a little like acupressure but it seems to help n then peppermint isnt so intense. Even drink peppermint tea to settle my tummy n helps to calm xtra anxiety. Good luck..let me know how u go making up yr own go to remedy bag. Ali :)

  • Ah yes the other thing is a cooling mat

  • Yep..thats terrific too!! All the best x

Hello I was wondering about everybody s experiences with botox at this stage... — Botox for Migraine support information

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  • I know exactly what you mean, with my husband was the same: "Oh okay, so you just have bad headaches", until he saw my episodes, he couldn't believe it. He is a great support, sometimes I feel sorry for him though, he doesn't deserve this burden! I'll let you know how I go! Sending positive vibes to you! x

  • Mari Lloyd I have them every 12 weeks. I just ache, feel weak no major problems with head. Just 'normal' auras. It is worth trying as they certainly aren't as bad as a migraine. Let me know how you get on xx

  • Best thing I ever did I have had bad headaches but not migraines, before I was getting loss of speech and numbness down one side along with poor vision in my eyes. I'm having 3rd round tomorrow X

New stuff works good — Cluster Headaches Exposed

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  • Never

  • i find that nasal and injectables do not have a high enough mg available to work on my attacks, i usually take 100 mg. wonder if i could snort a pill and get better results?

  • I heard a while back someone's dad did this or something...I can't say what it'd be like though...harsh I'd imagine but I don't know for sure

Wondering if anyone here can tell me whether this is common Last Friday I had... — Official Migraine Support Forum

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  • That's awesome! :) And diet changes sound like a good idea too.

  • I think it's time I make some diet changes too

  • I know this is said to be a sign of a stroke or something but twice I could smell toast burning. The first time I jumped up and searched through my house to find where the smell was coming from as it was so real. The second time I was questioning my sanity thinking that I was just going crazy. I told my family doctor but she just blew me off.

On a six day migraine. How can I get the er doc to give me something for pain — Migraine Chat Room

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  • ER docs are the worst. When I get to that point, they make you feel even worse! You are not looking for a script just some relief! Sending love and prayers your way!

  • Pain meds don't work for my migraine headaches.

  • Sometimes it has worked for me. Only when I take the pain med when a migraine begins. I used to take the pain meds when I felt dull pain around my eyes or temple. I take that as a warning signal and pop a pain med immediately.

Well apparently I did something that triggered a CH attack Now every flipping... — Cluster Headaches Exposed

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  • Ah I've just read a bit about it and realise that I had read it before. My memory sucks.

  • I believe kudzu acts as a natural calcium channel blocker similar to verapamil without the sides

  • Xxxxxxx Yzzzzzz I think you're absolutely right on your comment above. I read a similar statement on a web site when I was researching the stuff. Some people think that just because something is "natural" it's safe. not always, so I research before I swallow something new. The kudzu has done astounding things for me. I spent almost 12 years having 6 headaches a day, lasting an hour and 15 minutes each. I used the kudzu powder 3 times a day, buy the end of the second day, the pain level had gone from kip 9 to 10 to kip 4 or 5 and oxygen knocked out the headache in 5 minutes. now, I go whole days and nights without a headache. So, the stuff works for me. Powdered, not pills, the pills didn't work. And, I have also learned that if I don't use it faithfully 3 times a day, the headaches are right back, in full force. I'm thinking that, along with keeping blood vessels mildly dilated, it is also removing the excess nitric oxide from my blood stream, and it's got a limited half life. I used verapamil for a few years, and I don't think it really did anything for me. It was more out of desperation that I used it. When the doctor wanted to up my dose, I researched the side effects, found all the heart problems it cause and discontinued it. I'm thinking there is a lot more to what I found about CH people having much higher than normal nitric oxide levels in their bloodstreams...there's a link here, I think. Kudzu is known to reduce this. I think that is where most of it's value to us come in.

So tired of migraines controlling my life. Woke up at 345am with this one — Migraine Chat Room

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  • I have. I even showed him a story on Botox that was on the news recently. He wasn't even interested.

  • I have not tried an SPG block yet. I have not heard of that. Will do some research on that. I do take Maaxlt. But wait until last minute sometimes insurance only pays for 12 a month now, not nearly enough. I don't understand why nothing works.

  • I got enough meds in me that I didn't miss baseball.

I ve been wondering Since triptans have an opposite affect on me intensifying... — Official Migraine Support Forum

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  • Ps: Google nightshade vegetables to avoid for RA. They really make a difference in aggravation by avoiding them. Best wishes

  • I've also been taking milkweed thistle as a liver cleanse. Looking at my liver panel, you'd think I was a lifelong alcoholic. I never drink, aside from a shot of Jack Daniels for pneumonia (once every couple of years).

  • Tess Welbourne Jordan http://www.arthritis.org/about-arthritis/understan ding-arthritis/when-to-see-a-doctor-about-arthriti s.php since you've seen your GP it may be time for a specialist Rhuemetologist. My spelling yikes! Have a good weekend and keep us posted. Xo

Praying Lord Jesus break this awful cycle before i go insane. so exhausted — Cluster Headaches Exposed

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  • I take sumatriptan, oxygen, cromolyn sodium, vitamin D, calcium/magnesium/zinc combo, melatonin and Quercetin bromelain. This combo has made mine easier to bear. They aren't gone for sure, but since using this combination I haven't screamed.

    I hope something new is found because today, with a storm front moving in, I can't walk on my own, can't stay conscious and I can feel my brain swollen on the side of my head. My eye has been watering all day so I'm afraid for when I wake up tomorrow.

  • Terry I am praying praying praying to The Father for strength an to stop this horrible cycle ..Yes Lord in your Holy Holy Name!

  • feeling the same way, monster is robbing me of my life and family are beautiful people to tolorate this disabling monster. hang in we will live, thrive and appreciate life more when it passes.

Jake Thank you so much for letting me in I was a severe migraine sufferer... — Migraine Chat Room

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  • Hi Uma,What kind of doctor helped you discover it was your neck and back? And what helped?

  • A Neurologist is the one who discovered the cause. But even after taking the pain meds he prescribed for a month and visiting a physiotherapist, as he suggested it didn't help me. I was on the verge of committing suicide. The pain was so worse. One of my friends suggested me to try natural healing methods and referred a local Yoga Therapy Clinic. And thank god, I heeded his advice. It is working for me. The exercises are not so difficult.

3 weeks since my last big dose of vitamin M and one micro dose Not a single... — Australia New Zealand Cluster Headache Support

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  • My migrains are alsi chronic especially last five yrs n between those n my cchs i get no let down or any time..n yeh i got depression high anxiety ptsd otha sleep disorders n now dealin wiv chronic body pain..im glad i havent lost my mind completely but to alsi wait soo long for any meds otha than topamax repax n dihydergotamine injections wen they were available...I do Wonder Who I Am..ive lost my identity completely n feel like im just a number waiting to be called up for yet anotha assessment n if i Get Told "its All In My Head n Further proceed to Tell Me I havent done Enuf for Myseelf i just might hurt someone else...ive taken this out on all my family n friends colleagues n lovers not too forget my two boys...simplu From Complete Invalidation n peoples own Denia/n subjective focus n running commentary that continues No Matter What Else Happens in My Life ..."im doing it all for attention" biases n That their lives n how what they do or have are used like Tongue Lashing Assaults n any little acheivement or change..good or bad in my "illnesses are Construed As if Doneon purpose n All i Do i Cry Wolf!! Further complicates all my conditions n its given me anotha kind of pain..I Cant Even Have A Simple Hug cos My sensitivity to touch anyhere on my body is as painful as burning lnives or being frostbitten..I Hurts Too Much n Otha than my mum n in part my Dad No one I Know Understands Just How Cruel a Life i Leadn ITS NEVA BEEN BY CHOICE..so the scars are my only measurement of even Untold Matters n The Contiual Disbelief i deal wiv every day/nite hrs mins seconds milliseconds etc

    Sorry..Venting even the people who may naturally be drawn to me..i destroy them first cos i wont have anyone else destroy me..Cos i Cant Find Me in this Totally tangled hermit like life i live. So for All hose who still dont wanna know but for gossips sake theyll take Anything..so read the above n this Fuk you All til u spent 2mins in my body n brain n Not Know Who You Are Anymre. It scares me Shitless. Sorry for my language everyone but tonite is one of those nites that every movement fills me wiv total pain i can only wrap myself in those soft microfleece blankets cos even pjs Hurt my Skin!!n i cant cuddle my lovely ever watchful n unconditional little JackRussell..a real Angel n fear my illnesses are unfaireven to her.. How do i keep living wen All The Pain takes ova...thats my biggest Loss..but its All the Losses ova the years too! Dumbfounded by illnesses that take n make a collective toll thruout ppls lives n on them. Mighty Angry Tonight.n off topic i suppose or inappropriatr of me..All I Can Ever Do is Say Sorry. Ali :(...

  • Feeling for you...

    Of all things I miss because of this illness, I miss myself the most.

    You're clearly having a rough time, no need to apologise.. This is a safe place where you can.vent and be understood...

    Ive had ch and tn since.I was a kid. Fairly early on it was suggested that the pain was all some attention seeking, thing all in my head... So, for about 20 yrs I never said anything in case they thought I was nuts. Hell, I thought I was nuts..

    Many of us have similar stories of the joys of dealing with dickhead docs and their ideas or worse...

    Goodluck luv, hope tomorrow is a better day.


  • That's awesome news Dan. Fingers n toes crossed it continues :D

What is your International Classification of Diseases. ICD 9. Migraine Code — Official Migraine Support Forum

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  • I was diagnosed with "cluster migraines" when I was younger. I don't see it on the list, but it had a lot to do with my eyes. I felt pressure in my eyeballs and it felt like someone was gouging them out with a spoon or melon baller (like there was a suction to it). Tunnel vision and bright auras as well. I actually went to an ophthalmologist because I felt like my eyes might really pop out. He is the one who gave me this diagnosis.

    However, I have experienced MOST of these on the list, and some of them more frequently. The "melon baller" doesn't come around much anymore, but I do still get auras and pain in my eyes and temples. Those are the most common for me, and some do trigger anxiety attacks when I'm stressed.

  • He also gave me a prescription for Tylox (with codeine). That stuff was great! I had a good 3 day nap while it passed!

I know this is a strange question Does any one smell a burning smell before... — Official Migraine Support Forum

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  • Ty, Tess! I thought i was going crazy?

  • I've actually heard of someone who said they hear whispers. Creepy! I do get tinnitus sometimes. Anything from a light hiss to a loud rumbling roar like a big rig or helicopter. Sometimes it's migraine, but I've also been diagnosed with Ménière's disease. That's an inner ear disorder that causes everything from tinnitus to vertigo. My ENT said it flares when I have too much salt, causing my inner ear to retain water. Bad thing is I crave salt during a migraine. Can't win for losing.

  • I have cravings before migraines!

I m wondering if anyone here has had a similar pattern as mine About 13 years... — Official Migraine Support Forum

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  • Oh, sorry to hear bout the migraines. :(

  • Yes! Doctors don't always know everything! And when you tell them what you think it might be, they look at you like you have google-itis. I had the same problem with my dermatologist when I suggested the blisters on my face were an RA flare. She had no clue that RA can attack any system or organ in the body, including the skin.

  • After a biopsy of one of the blisters came back as nothing diagnosable, she finally somewhat agreed with me. But by then I had switched doctors. Her associate was much more knowledgeable on the subject.

Getting ready to drive into a high trigger area. Prayers appreciated — Official Migraine Support Forum

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  • Me 2! I cant stand the sneakers with the flashing lights!

  • My dear husband bought colored LEDs for our Christmas tree the last few years. I pulled the blue ones out.

  • My oldest daughter doesn't drive at night either. She has a non-epileptic seizure disorder and those light can trigger a seizure.

At last I got my bar changed today at Camberley tattoo studio on the London... — Daith piercings to help with Migraines

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  • You don't have to but I can't see mine to do it and I would rather get it done by someone professional as he had to use pliers to open and close the heart x

  • Ahh ok. That makes sense! Definitely better to be on the safe side

  • Xxxxxxx Yzzzzzz I think so and its only £5 x

Has anyone been on gabapentin and it made the headaches worse instead of acting... — Migraine Chat Room

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  • I took it and it didn't help ...my doctor kept increasing my dose... Then I said this isn't working let's try something else. Then I was allergic to all the other meds... Botox is the only thing that has helped me.. Good luck

  • I took it for 2 yrs. Didn't make mine worse but it sure didn't make them better. I lost 3 very good jobs bec I was so stoned all the time that I had a hard time remembering things and staying awake.

  • I tried it I couldn't tell it help migraine but my husband said I turned into satan I had to stop

I have had a migraine since Wednesday Anyone have any ideas how I can get rid... — Migraine Chat Room

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  • I agree. Cold head, warm feet and hands. Dark room. Drink water.

  • I would see doctor

  • If this doesn't fit your pattern then you should see you primary care. Until that point do what you're doing and some of these tips^ (also love a cold head) add some mindfulness exercises. Sometimes breathing exercises or loud noise with mindfulness result helps me (really really loud heavy metal or big classical like Wagner) focus on all the other parts of my body.

    Usually with me I've been neglecting my magnesium. After a couple more days feeling terrible whilst the magnesium works I'm back to usual.

    Half a banana in the morning, half in the evening is a great way to do it naturally. Bananas used to be a trigger for me but I noe know it wasn't the banana itself but the folic acid that my body was fighting. Magnesium kicks off the methylation cycle and if it's blocked applying pressure from the top with magnesium isn't going to work!

    I use magnesium oil rubs on my arms once a day. I still remain skeptical but if I forget soon know about it.

Does anyone out there happen to have Hemicrania continuous and Hashimotos... — Migraine Chat Room

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  • Doctors don't know what they're talking about in most cases.

  • My daughter was put on that medicine a week ago and her headaches were horrible. She has an under active thyroid and we called the doctor and he said to stop the medicine. The headaches are better but not gone but I truly feel the medicine was making them unbearable. She has other things that cause her migraines but the medicine I truly feel was making them worse. I would try to talk to them again or see if you can slowly whine yourself off. It is your body, life and decision.

  • I recently had an increase of migraines due to too much T3, first time ever, from overtreatment with Nature-throid. Have you had your T3 & T4 levels tested? I am doing much better since slowly decreasing my medication down to have normal levels again.