Thank you, Jean, I'm glad you are doing well. Pain free wishes for you, Hope it continues. xo
I have one sided ndph. I have the exact same symptoms as you do David Warren Burdine! I have just been prescribed medical marijuana.
Is the marijuana working for you?
Ginger Thomson I've been using the medical marijuana for about two weeks. It is improving my mood and definately helping me sleep but not noticing any significant pain relief. But with all things ndph you have to try different strains and amounts and it does not help everyone.
Well it did, but then I got worse and Doc. and I decided time to go off of it. And it has been a journey of trial and error and A lot of hospital stays with PICC lines and with many other meds
A ha. Year I've been in most of the meds you have, except phenergan..I'm allergic. And I haven't tried botox yet. Are you finding success?
Yes!! This last round is pretty much the max dose.. I'll tell ya I went from 30+ migraines a month and that just chronic migraines!! To about 20. Now I did just get my Daith pierced on the 1st of June this year and only 10 since though, I just got over a 3 day span of what was "Almost" a Status Migraine..
Great idea. I use a cold pack like yours on my forehead and back of my neck when I get a bad migraine. Really helps. But of course putting a cold cold pack on my forehead during a headache feels alot like I ate cold ice cream too fast and gave myself an ice cream headache LOL.
I remember when I first started suffering I was looking for gel packs. And found a guy on eBay who sells packs in crazy dimensions. I bought a pack that was extra long so I could wrap it around the back of my head from one temple to the other. Lol
To those whom have trouble with the cost of Osteo http://www.health.gov.au/internet/main/publishing. nsf/content/health-medicare-health_pro-gp-pdf-alli ed-cnt.htm
Summary: A Medicare rebate is available for a maximum of five services per patient each calendar year. Additional services are not possible in any circumstances.
If a provider accepts the Medicare benefit as full payment for the service, there will be no out-of-pocket cost. If not, the patient will have to pay the difference between the fee charged and the Medicare rebate.
Patients must have a GP Management Plan and Team Care Arrangements prepared by their GP, or be residents of a residential aged care facility who are managed under a multidisciplinary care plan.
Referrals to allied health providers must be from GPs.
Allied health providers must report back to the referring GP.
they do but i am currently using them to see a dietician
Sarah he was doing great. 2/10 pain and back to school full time since Christmas but these last 4 weeks pain is back to 7/10 and no school. We think a virus has set whatever is going on , off again. Back to biomed doc Thursday to work out where to go next
Oh no. That must be beyond frustrating! Let us know if you figure it out! What was helping the most when he was down to 2/10?
Vitamins and minerals. Vit D, selenium a, zinc , b6 , Curcumin and lots of other goodies in his vitamin mixtures. Oh high dose magnesium as well. He had lots of deficiencies. Have just done a gut biome test so keen to work out what gut bacteria we need to work on as well. His seems to be very much connected to his gut health.
Is that 2 oz for $14.95?
yes. it doesn't sound like much, but it is. it's really light by weight. the 2 oz bag lasted for me more than a week, maybe 2 weeks, using it 3 times a day. For perspective, I think what comes in the bag would half fill a zip lock sandwich bag, and the scoop you use it about 1/4 teaspoon. I ordered a bigger one the next time so i don't run out.
I know what you mean. Right now my brain is just cycling on off the meds
That's what I found too. I cycled off the relpax cause I was taking it every day. Sad as it was, when I got a really bad migraine (level 11 I call them), I stayed home in bed for 3 days and suffered through because I knew nothing would completely knock it out. That finally broke my rebound cycle and now I can pretty much take an advil and or muscle relaxant when I start to get tense and that deals with the lower level pain. Anything over a 5-6 I go to the serious stuff.
The only answer to that is not taking the meds. I'm searching for a lifestyle change solution. Meds cause residuals.
I neglected to use ice yesterday but did put a cold rag at the back of my neck while sleeping. I will have to ice it when I get off work today. So hard to work when in so much pain :/
See if your work has a first aid kit. They may have a crack and use ice pack in it. (Most do) on your way home buy strap on ice packs. (Walmart,Walgreens, you name it) Walmart comes in a two pack so you have one for your head and a larger for behind your neck. Laying down with those is pure heaven
Thank you for this idea. I will check it out when I get off work.
Just Friggin WOW!!!
I woulda straight up called him a quack and asked him if the book he wrote was in the fiction isle. What a disgusting excuse for a doctor.
Yeah I haven't been able to find his so called "headache book" anywhere! And I have access to medical books through college that you wouldn't be able to find somewhere else! What a quack! His Yelp reviews are horrible as well!
Welcome, Ariana. If you have read the earlier posts on daith piercings, then you will find out that it has helped some members of this group. You can use the keyword in the 'Search this group" text box just below the cover image at the right side and find out the earlier responses. :)
Ariana,if u want to get reed of Migraine,plez call me on 9822414555,India
I'm up for my 2nd round next week. It help me slightly, I mostly notice less headache in my eye/face region and it feels like the overall baseline is a bit lower. It was worse for the first week or so, don't let that worry you - I think it's normal. Ive been told you need three rounds to see the full effects.
I've been doing Botox for almost 2 years now. Between that, Candestarten and Doxepin I very rarely have days above a 5 on the pain scale anymore. Going in again in about 2 weeks.
No dice with tons of Botox and Myobloc.
I have had it several times and it is very relaxing and helps alot to take the pain off of my mind, but as soon as I leave it goes back to the normal feeling.
I also had craniosacral therapy. During the time i was having therapy, i had more migraines. Same with acupuncture.
I've had good experiences with craniosacral therapy. It didn't take pain down, but I just all around felt better. The only problem is the cost and not being covered by insurance.
It's a neurostimulator implant that has leads that sit across the occipital and peripheral nerves. I've been told it kind of feels like a tens unit but in your head. There is a trial before the battery is implanted to make sure it will actually help so that you aren't put through an unnecessary surgery.
Are you currently working with Dr. Scott Glaser (Burr Ridge/Hinsdale) now? We ( my daughter) used him aa he was just getting started with Reed back in 2011/12. She had the trial stim and it didn't work for her. We never got insurance approval despite going through the whole multi appeal.process.
Yes I'm currently working with him. Did you do the trial without insurance approval? I'm working on my first appeal now. My insurance wouldn't cover it claiming my condition "isn't severe enough". As though not being able to hold a job or go to school or have a life is just something I do for fun.
You don't want to hear this, but he's right. There's a lot you can do to help yourself. The doctor can't fix everything, he needs you to help yourself as well. After 50 years of migraine, about 15 of which in a chronic, stasis state, I'm down to about five a week. I did it by changing my lifestyle. I exercise as much as possible, eliminated alcohol, processed food and all carbonated drinks from my diet. I used massage, chiropractic, acupuncture and acupressure. A weekly or bi weekly massage did a world of good to relieve stress, and keep my back and neck supple to avoid any associated triggers. I stopped watching television, going to movies, and limited my time in front of computers and cell phones as much as possible. Yoga helps a lot, and I started sleeping the same hours every night, not just the same number of hours. Every single day is about preventing migraine or dealing with it. It's the first thing that comes to mind when I get up, and my last thought when I go to bed, and it has been so since 1999. Read everything you can about it and make every recommended change you can. Good luck, and ice against your head or neck helps a lot!
Ouch! And you look terrible in that picture (meant in the nicest possible way) I totally understand how you feel. Mine have been chronic since Christmas and have changed over the last few months with numb left side, no speech and weakness. Roaring pain that all preventative Meds have not touched. I can only pass on my sympathy and hope you can find a doctor that can help you xx
See if the chiropractor can help. That broke mine before and since going to one every week after has helped tremendously
Hi, yes that's why I've been worried about doing it before now. My little boy was born with an exomphalos and as such struggled to feed and put on weight in and out of hospitals and his main source of calories was milk and cheese and fromage frais. So the first time we tried cutting it years ago I replaced milk with soy milk and found him soy chocolate desserts etc and after a few weeks he was no better so I assumed it wasn't dairy. This time we cut out ALL dairy and all soy (because of the sinus congestion and soy has the same contesting properties) He is eating better than ever before, once you find alternatives your little one likes it's not that hard. Elliott likes cashew milk and a chocolate almond milk, there are a few cheeses that are dairy and soy free and a pure sunflower spread that is fine in sandwiches etc. I was worried about him losing weight as he's always been on the 2nd percentile but he's put on weight in the last three months and is up to the 9th. It's defiantly worth a try but I'd say you have to do it 100% to know for sure and then can always try to add small amounts back in to see if he has a tolerance level later on. I was told it would take three weeks to know if it would make any difference but I knew after a week. X
That's brilliant that your husband is doing that! I find it irritating that so many doctors don't accept that what you put into your body every day can such an impact on health. Surely it's common sense, if you put the wrong petrol in a car you wouldn't expect it to run. I was made to feel a bit silly before when I suggested food intolerances and I looked into a 'failsafe diet'. It wasn't until his paediatrician suggested milk may be a trigger that I felt confident enough to go for it 100% and I'm annoyed with myself for that!
How old is your son now and what preventative does he take ? Xx
Aww poor things aren't they ! Hope she gets some support and relief from the migraine clinic ! Xx
Tasha Smithson my son will soon be 13. No preventive medicine has helped much. Presently he is on depakote. He also gets Botox every 3 months.
Great update and good to hear from you, Alex.
So glad you are 'moving on' with your life and most of all, pain free!! Really happy you don't need to be here. Be sure and stop by occasionally and give us an update.
Remember - PICTURES ... we want pictures!! Wife, kids, house, Holden. We want it all :)
Good to read a happy comment for a change... Glad someone's getting on and LIVING again... Stoked for ya mate...never look back..
We'll expressed !
I'm 13 months pf and I too feel the way you do .
I've been admitted several times and they always give me DHE for 8 doses every 8 hours. The last time that did not work so they ended up giving me steroids by iv until the migraine broke. I'm about to be admitted again if this one doesn't let up.
Admitted, meaning for several days?
I've only been in the ER for a few hours for migraines and it helped tremendously. I hope you feel better!
I received I think 5 doses of DHE
I bought something similar from Fisher-Wallace, (FDA approved for depression, anxiety, insomnia and pain). It greatly diminishes the pain WHILE I'm wearing it. (40 minutes 3X a day is the max allowed). But the pain comes back immediately. Still, I look forward to those three 40 min pain break each day.!They have a 30 day money back guarantee and your insurance may even cover it.
Hmm. I am in the US. I think they might have already approved SCS for headache...they have a couple different procedures they do. I could be totally wrong about that though. I should go do some research. I will go check it out.
It helps me when it's on.. And for about 10-15 mins after the treatment. Lessens the pain , doesn't take pain away. I still think it's worth it! Relaxing too but takes awhile to get use to high levels
I've not read the academic paper but will find it. I live in hope for anything.
Xxxxxxx Yzzzzzz i remember getting from this link to a presentation summary at an american Neurology conference - it was a preliminary paper rather than a full research thing. http://www.ctvnews.ca/health/experimental-migraine -drug-starts-working-in-days-study-1.2938628
Aah thanks Lesley. That saves some research.
Diet has worked wonders for me and many others. This group is dedicated to a migraine-oriented elimination diet to identify food triggers and get you at least a little better.
Yes!! The food triggers are huge!! First Google migraine headache food triggers.. I avoid egg yolk, nuts, turmeric(this is a big one for me.. It is found in donuts, mustards, chicken bouillon cubes and more), vanillin(artificial vanilla flavor found in vanilla wafer and many other products including chocolate flavored rice cakes?!!!) food dyes(yellow 5, red 20 etc), all fake sugars,
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I have been diagnosed with trigeminal and occipital neuralgia, Stephen Wilson, but, yes, my headaches do seem similar to SUNCT headaches. In the past, they have been wrongly diagnosed as sinusitis, cluster headaches, TMJ, migraines, etc. I have tried various meds already. Hope the tegretol will do the trick for me! And, apparently, an MVD (brain surgery) has a 90% success rate, so I do remain hopeful.
Hi I hope you have luck , Tegretol is mainly the 1st potion used for Trigeminal Neuralgia , neurologist usually prescribe . Its always a pain as you see them 1st, try this then go back wean off and then try that and so on , often being a disappointment
I know, this thing has been going on for many years now, first with my migraines and now with TN/ON as well. It drives me mad sometimes! I am also seeing an integrative doctor now, in an attempt to break the seemingly perpetual cycle of meds and side effects...