Hey just wondering if anyone has had radiofrequency rhizopomy surgery for CH — Australia New Zealand Cluster Headache Support

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  • Have tried preventives, verapamil ony helps at 960mg with a tonne of side effects. Lithium and topiramate don't help at all. Prednisone is great but only at 100mg obviously can't keep on that dose. Abortives, O2 don't work. Sumatriptan injects work great but can only use 2 in 24hrs where I'm getting 6-8 CH. Am currently trying the D3 regime. I have read up on the surgical procedure. That's what has put me off going for it, plus no guarantee it will even help. Thanks for your input!

  • If you just started the regimen, make sure you do the loading doses. It helps get your levels up quickly.

  • Radiofrequency rhizotomy is a procedure that is useful for trigeminal neuralgia but not for CH... I have CH, CM and TN and had MVD about 3 weeks ago, which is why I'm aware of all the procedures that exist to trreat TN. As far as I know, this is a nerve damaging procedure and, as mentioned above, the cause of CH lies in the hypothalamus, hence the procedure will not be very useful, I'm afraid... Best wishes.

Hi all I m Jon 33 new to the group Just in the middle of my 3rd cluster first... — Cluster Headaches Exposed

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  • Xxxxxxx Yzzzzzz imigran pills will not work fast enough to abort clusters. Imigran nasal sprays or injections enter the bloodstream quickly enough to abort. The pills are likely never to work for you.

  • Had the worst attack ever last night. Lasted about two hours. I was vomiting from being in so much pain, can still feel shadows this morning.

  • Hi Jon...i never had nite terrors as a child..but i battle them constantly now if that helps..i wonder if anyone has nite terrors wen not chronic with clusters??

I was just diagnosed with this awful demon in October after months of pain and... — Cluster Headache News

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  • Tracy, Omega-3 is clinically proven for heart health maintenance. Supports joint health, brain and eye health and general wellbeing.

  • I guess I didn't ask that question right . do you know why we specifically include it in "Batch's" supplements? or do we just do it so we can be healthier? I'm curious now, think I'll go Google and see if it does anything for a hypothalamus or histamines!!

  • i know exactly how u feel pal been there seen it done it

I m seeing this a lot so I just want to put this out there especially for the... — New Daily Persistent Headache Support

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  • I also have accommodations at college, albeit those are easier because there's an entire office devoted to them. As long as you have the tenacity and the paperwork/tenacity, it will be done.

    And as with below, please feel free to put her in touch with me!

  • Thank you :)

I see so many posting about getting there children to school My guy is 11 been... — Parent support forum of children teens suffering with migraines

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  • Hi everyone, I hope you all find some ways to change seating/computers/lighting at school to help. Other suggestions for 504s etc can be found at www.photosensitivity.info

  • Xxxxxxx Yzzzzzz what equipment is there in is classroom? Do they work off a projector (potential noise trigger) or flat screen board (potential trigger if it has a low refresh rate - I am told 60 is too low but 60 can be quite common)?

  • My daughter is homeschooled and also seems to have worse headaches when school is in season. I suspect that she let's herself get emotionally stressed over school. I try to make it very low-stress, but she does not like school, so I still wonder if that's it.

— New Daily Persistent Headache Support

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  • Much therapy, coping skills, mind/body skills, some biofeedback at Cleveland Clinic PED pain rehab. Definitely worth 3 weeks in Cleveland, Kelley Ashcroft. As I said, my daughter is attending school, not miserable, and very functional now. She still has a pain level of 4-5 daily but she doesn't complain. She's a tough cookie. The Neurologist we see at Cleveland clinic, Dr. Rothner, is excellent, too. He said she should have seen him first, then done the pain rehab program. We did it backwards, but either way, best use of our time. I'll never give up that there may be a miracle for Colleen, but I take comfort in her acting like a mostly, "normal kid" and not pitying herself. She bonded with other children/teens in chronic pain. Very, very helpful. They also help the parents to cope.

  • That's great information, thank you so much!

  • Xxxxxxx Yzzzzzz's helpful to know your daughter benefitted from going to the Cleveland Clinic. I will probably be pm'ing you a list of questions if my daughter goes to the clinic. She has done four weeks of CBT with biofeedback and we're seeing nice results. It'd be nice if the CBT with biofeedback took care of the ha's and that's all that's needed.

Question I find that as I get older my migraines and triggers change Like the... — Migraine Chat Room

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  • I will sometimes force myself to be sick because it relieves the pain a lot

  • It used to for me, but after awhile it started intensifying them.

  • Hmmm sometimes it doesn't relieve the pressure and sometimes it does. But majority of the time it at least takes the edge off. Lately I notice I'm SUPER sensitive to artificial light (anything but the sun), and after I get a migraine I find keeping the room as cold as possible helps, I put cold compresses on my forehead to, for added comfort. But it seems like no matter what I do or don't do, they keep changing. I'll go weeks without one but for 2 weeks straight afterwards I get one every other day. And i hate the look I get when my husband or family ask me to go somewhere and I say I have a migraine.... That look of 'oh ya...Sure ya do' like I'm avoiding going out. Wish they could live a month in my head....When it feels like my skull is going to splinter into a million peices from the pounding sledgehammer I swear is destroying my brain. Sometimes when they look at me like that, I feel....Weak...Like I should just deal with it....But little do they realize, by not going out and by staying in a dark, noiseless, cold room, I am dealing with it the only way I know how. Wish the puking thing worked everytime.

Does anyone have experience with Verapamil — New Daily Persistent Headache Support

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  • Look at the contraindications for other meds. I think you shouldn't take it if using pain killers or something like that. It's written in the insert.

  • Verapamil did nothing for me. Lisinopril was next and actually made my headaches worse... fail again, My next step is botox as well but not much optimism there... Only thing that works is prednisone. But the prednisone has caused a ton of side effects including cushings syndrome. fml.

  • My daughter is currently on Verapamil, but I'm going to talk to her neuro about getting her off it. It hasn't helped her headache at all. ☹️

I am fighting a round of headaches again since Saturday with no relief... — Cluster Headaches Exposed

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  • There are other triptan meds so ask for a different one. I take Axert but it does take one hour to kick in but my ch's can last up to 3 hours also though it stops any others from happening for up to a day. It also doesn't have any really bad side effects.

  • The best thing you can do is find a mix of meds that works best for you to manage your cycles once you get there life is much more livable so keep striving for that until you get there.

I have had daily chronic headaches for years and have tired everything under... — FasciaBlasters Migraine, Tension and Cluster headache support forum

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  • Where do you get extensions? I did t see them on the website?

  • Dear ladies! You need to be blasting your whole body!! It is all connected! Like a big rubber band. So if you are only working one part of the rubber band that is a big ball (aka your body) it wont loosen it up. It can evrn make things worse as you tey anf loosen just one tiny area and the rest of your body is tight..:: then it pulls that new area even tighter. Multiple migraine series theough the week is important. Do at least one light and brisk whole body blast from head to toe once a week ( should take about 10-15 minutes). Pay special attention to your back along with the migraine protocol since so many trigger points in back affect the head. I have also gotten immense help with my migraines and vertigo from blasting my face: my face is sooooo full of bad fascia. Blasting my face and neck helps loosen up my scalp ( which was a nightmare). My scalp is finally starting to loosen up . I use the nugget on my scalp for pressure points and doing crayon work on it too! This realllllly works for migraines but you cant ignore the whole body if you want improvement .

  • Thank you for the information! I had been doing sections of my body on different days of the week because I didn't have stamina for whole body, but I'll give it another try... Doing full... and add more migraine protocol sessions. Again, thank you!

Any info would be so grateful — New Daily Persistent Headache Support

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  • My 11 year old with NDPH was in the Cleveland Clinic Pediatric Pain Rehab program last August. She has now been going to school successfully since September. They helped her become functional. Their program is amazing!

  • No way! Happy there? His manner of teaching us about NDPH has been unparalleled!

  • Yes. He's excellent with Colleen. She loves him, too. So far, his way of topamax has helped her. She doesn't have many migraines on top of her regular headache. We saw him first in September. We go back to him next week. Cleveland is 4.5 hours from home and totally worth the trip. She did great in their pediatric pain rehab program in the summer. It turned her life around.

We are sure getting alot of friends in our group Not a good illness sure would... — Head Pressure or Migraine and sinus related along with dizziness

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  • I'm ok, struggling on but think I'm getting close to a diagnosis that may well help others on here.

  • Thats good, still could be better thow I take it ? Do they have u on meds ?

  • It's mostly figured out, everyone wants a magic pill, or thinks they have some tumor or physical defect that needs surgery. Those people that have that do not make it to this group, long since figured out. People here have invisible issues, muscular issues either causes by emotional trauma, secondary issues from complications from others problems, or looking down at their handheld device to much. There are other missed diagnoses or subtitle problems.. but yea..

Hi — Parent support forum of children teens suffering with migraines

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  • Wow, this is my daughter's story almost to a T. She was diagnosed at 20 months after MRI, EEG, and metabolic testing. We were happy if she only had 3 a week. Cyproheptadine did not help her either. Triggers were very hard to figure out, really just overstimulation is all we have figured out. She had times where she would go 25 days without a break. She is now 4 and after multiple drs, we found a great pediatric headache specialist that started her on new meds that actually worked! While she struggles with a lot of aura symptoms still (to the point of not wanting to walk), she hasn't had an actual migraine in almost a year!!! It is possible to find relief, it just may take a while. This is a great group to get support from.

  • Thank you so much for your reply! It's so nice to know their is hope! Do you mind sharing what medicine was successful for your daughter? We are increasing his dose of cyproheptadine and will give that two weeks before his neurologist changes preventative meds. Even with advil they sometimes still get away from him that causes hours and hours of napping and vomiting. I'm so happy your daughter has been migraine free for almost a year! That is truly amazing!!

Does anyone use sumatriptan injections what are your thoughts also does... — UK Migraine Support And Advice Forum

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  • Have u ever had any reactions x

  • No hun only the sumatriptain gives me an aching jaw and sensitivity to hot and cold. I've took both medication for over 10 years but everyone is different x

  • I use them, and I think they are the best thing. I have 99% success rate in getting rid of my migraines. They come in a pen form, so you load them and then press against your thigh. It triggers it into your leg. Brilliant no fuss, the migraines gone in no time.

Well Yesterday sucked big time Migraine hit like a lighten bolt around 7 — Migraine Chat Room

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  • How many times have you done the full set of Botox injections (30+)? I did 3 rounds and no relief with the final round resulting in swallowing difficulties. All with noted difficulty with holding my head up, a common side effect.

  • I have done 3 rounds of 30+ first time there was no difference 2 time I got 4 days spread out over the 3 month time but with the 3 round I have had 5 days in a row then 3 days down then the 12 day run. I have been at a pain level of 4 all day and just shaky and super sensitive to light and sound and my head feels like it weighs a ton.

  • Thanks for sharing your experience. Sorry you're in so much pain. It does feel like we're in this boat together.

Hi all I feel guilty but I need to vent And would also appreciate any input... — Cervicogenic Headache Support Forum

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  • That is exactly what happens to me. Started almost 14 years ago. At first I had to learn what triggered the vertigo, I was bumping into walls and people all the time. Now I know what triggers the vertigo, so I don't have it constantly. I still get it with neck movement, lying down, etc... Its movement for me, I just don't do things that cause movement as much as possible. No running, bouncing, lifting over head, etc.... I have seen 30 + specialist and have had no help. Theropy makes it worse. the heavy head feel is not as bad as it was at first, but still there. I wish you the best of luck, let me know if you find a miracle cure :)

  • Do you have a lot of tension or emotional stress baggage? My neuro thinks it's all related to anxiety issues.

  • I did 14 years ago. Have changed my life completely and have zero stress and still pain and vertigo. I have had many Drs say it was stress, that is not it. Although emotional issues does add to pain, such as crying or laughing

I live with chronic migraines due to a carotid artery dissection Fioricet... — Migraine Chat Room

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  • Fioricet is a pretty benign drug, I have taken it for years (over 10). Others are right, the more you take the less it works. Never ever take more then 3, the acetaminophen is hard on the liver and you can do perminant damage. I only take it once a day, and when it wears off I am just down for the day if my ha reintensifies. I also have a self imposed limit of no more then 3 days in a row. This has worked for me.

  • I take it. It works great but every doctor I have had will not give more than 30 a month. Wish I could get more.

  • Are you able to take DHE?

Well I guess I ve been lurking here long enough that I should introduce myself — Migraine Chat Room

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  • Thanks! I get quite a few of weeks, but a majority of them I can work through. Once a month though they just hit me like a truck

  • I work in the medical field and it makes me so upset when I hear about doctors that don't believe migraine pain. I really hope you find a good neurologist

  • Xxxxxxx Yzzzzzz I wish I could say I did but I'm on day 150 of a migraine that just won't quit. But here's to hoping!!

Ok saw a pain management specialist and he thinks my migraines are... — Migraine Chat Room

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  • I had that done in 2015 and didn't help me at all..

  • I had it done this past July and it has helped with some migraines. Recovery time was quick, very little pain afterwards. This helped with neck pain and stiffness for sure.

  • I've had steroid, facet injections then finally radiofrequency ablation at the mayo clinic. Amazing results had it done it Sept and I am enjoying life again. Best of luck to you

Hi all Anyone here familiar with Sumatriptan If so how well does it work for... — Migraine Chat Room

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  • I usually get migraines annually, but when I get them, look out. I'm as sick as anything.

  • It works great for me

  • It made me feel weird also. Plus he made me very sick throwing up so much it made the headache worse. I found I cannot take any of the meds like that. Did not work for me either.

hey. first let me apologize for my crapy english — Migraine Chat Room

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  • I have gone back on Propranolol (GP prescribed) and find taking just 1 tablet has improved my migraine headache pain considerably. Wouldn't try marijuana due to nature of my work.

  • Only thing that works reliably for me. I just wish that jobs understood this.

  • yes.

Anyone available to do a daith piercing tomorrow near camberley or surrounding... — Daith piercings to help with Migraines

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  • Danielle it's not something I've heard whether is helps or not. To be honest if you are desperate as a lot of our clients are then have it done. The worst that could happen is that it doesn't work so you take it out and let the piercing heal. It's worth thinking about

  • Hi Alison Milward does it matter what ear you have it done in? X

  • Lianne from what we are seeing with our clients and from this page most seem to find that the left is the one to get done

Has anyone had both ears pierced I ve had my right ear pierced last Feb and... — Daith piercings to help with Migraines

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  • When you feel a migraine coming in so you gently move you piercing jewellery?

  • It is just that the jewellery passes through the acupuncture point that seems to be the key, moving the jewellery can help, but it depends on what the source of the migraine is. If it is from preservatives it wont stop it.

  • Yes knew the reasoning behind the piercing but also know that a number of clients have mentioned that if they move the jewellery slightly it can help alleviate the migraine. Unfortunately we can on pass on information that we get from clients as neither of us suffer :-)

Wondering if anyone has any advice my migraines are getting worse n affecting... — UK Migraine Support And Advice Forum

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  • Get the mini pill, it may make your migraines worse or it may not affect them or it may make them better! It's trial and error x

  • The trouble with keep going is eventually you crash and burn - I now have daily headaches with excruciating migraines and have not worked for 9 months

  • Hi Naomi if you are local you are welcome to join my free migraine event on Thursday 12th Jan 7-8.30 pm at the Wishing Well Bromsgrove

Yesterday I went to have my mri scan last night I felt awful this morning I... — UK Migraine Support And Advice Forum

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  • Yes it's the affect off the MRI Scan. I have had three done and all three have left me in so much unbearable pain, good way to ease it is block the signals to your brain. Push your fingers in two the nave of your neck and tilt your head back X

  • I have a MRI tomorrow .. i do hope i dont suffer afterwards. head bad enough today.

  • I had terrible migraine after my mri - why have you had 3 mri?

created a poll in Migraine Freedom. — Migraine Freedom

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  • I've tried everything under the sun. Medical and holistically. The only thing keeping me pain free is Botox. Actually I had my fabulous Neuro add a few extra injections to the left of protocol and I think it's prevented a few migraines that would usually break thru. No migraine during my vacation. No menstrual migraine yet. So excited. Can't wait to track this latest round. Ps I'm severely phobic to needles but it's my saving grace. Happy New Year!

  • That is very exciting!

Hello I recently started taking sumatriptan for my headaches and I have some... — Migraine, Cluster, and Chronic Headache Sharing Community

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  • I get the exact same side effects. Especially the weird ache in my neck (usually the back of it) and sort of behind my ears. Please see ur doctor if your worried to settle ur mind x

  • These are standard side effects for sumatriptan. They happen to me almost instantly after the injection type. Same for my son. My understanding is that it is because of the sudden openings of your vessels and capillaries.

  • I stopped taking it because of the way it makes my head feel. I don't know how to describe it but it makes my head feel worse than the migraine did. I'd rather deal with the migraine than how the sumatriptan makes my head feel.

So my son is 6 and has had migraines with vomiting for 2 years We ve been to a... — Parent support forum of children teens suffering with migraines

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  • Xxxxxxx Yzzzzzz Any reflux issued? I ask because of something called EoE (Eosinnophillic Esophagitis).

  • He had colic and reflux issues when he was a baby

  • We had his tonsils and adenoids removed 3 years ago because he had sleep apena from them being constantly swollen and blocking his airway

My son is 14 and suffers from severe chronic migraines. abdominal and head — Parent support forum of children teens suffering with migraines

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  • Thank you very much.

  • I am a teahcer. I know that my son and I wouol work well together. He's bright and picks up quickly. I still dont like the idea of home schooling because there are so many experiences he would miss out on. I could never recreate the environment he has at school. There is the social, but also all of the experiences that each teacher he has is able to bring him. Just wish he could go more.

  • Thank you for your thoughts. I understand where you are coming from and envious of your teaching skills Kathy slater. Cathy Maher Romero, my sons neurologist has been telling me the exact same thing. It helps to know that others are as conflicted as I am. Thank you

Has anyone tried hypnosis to help deal with the pain Years ago I used hypnosis... — New Daily Persistent Headache

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  • Tried, but strictly for pain (not for triggers). No benefit, but no harm done and relatively (in the grand scheme of NDPH treatment) inexpensive.

  • In general I would think that anything that reduces your likelihood to encounter triggers would be a good thing! Honestly it never hurts to try something just once to see if it does help, because if it doesn't then no harm done, but if it DOES help then it's a huge win! I would go for it if you have had good experiences with it in the past :)

thanks — UK Migraine Support And Advice Forum

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  • Have you joined the TN UK Facebook page? Someone on there who's had the same surgery may be able to help

  • Yes, it's been so invaluable

  • They're a cracking bunch

Have any of you ever had Benadryl through an IV I had to go to the hospital... — Migraine Chat Room

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  • Same thing has happened to me, so usually they give me Ativan with those other 2 meds to help with feeling anxious

  • I hate Benadryl, but I have a food allergy so I HAVE to take it sometimes. I get jittery, but tired, then wake up with a massive headache the next day.

  • I have been using Benedryl Andrea compozine tablets as a self administered abortive for almost a year now. While not as effective as the iv combo, I don't get the terrible feeling your describing..... good go-to that has cut down on my er visits quite a bit.

Has anyone else had any experiences like this — New Daily Persistent Headache

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  • Bless you Krista Grams makes me sad to hear you suffering so much when your so young. I really hope you get some answers and relief so you can live your life like you should be able too xx

  • It's horrible especially the pain and anxiety! Did you try lyrica?

  • Thank you :) I just hope we all get relief someday soon!