Well … just in case you were wondering how my day is going, my menopause specialist just informed she’s tapped out, and referred me to the Chronic Disease Clinic in Vancouver – which is a rather crazy scary name BTW. It will only take 18-24 months to get an appointment – so much YAY!
Yep, 6+ months of hormone therapy (not including the 4 months of birth control before that) and it only makes the constant headache consistently worse. Sigh.
My headache specialist is likewise tapped out, waiting on a new class of drug to be approved in Canada. Three rounds of the botox (spaced three months apart) has not helped.
So – about to roll into my twenty-fourth month of daily constant pain – all that leaves me with is eating well, exercising as much as possible, and possibly trying to cultivate a daily mediation practice. For the foreseeable future.
Maybe the Goddess of Menopause will decide I’ve suffered for long enough and ease off on the headache (and the other symptoms while she’s at it).
I’m also emailing the massage therapist after I publish this update, because as of next Wednesday I’m fully vaccinated!
In other nicer news, my house is getting cleaned for me today. 🙂 I added 1300 words to Archivist 2 before lunch and my appointment (which isn’t a lot but I’ll take it). And here is a pretty picture of my desk buddy:
Oh my gosh – I can’t even imagine. I hope you feel better, that has to be awful. Are there any drugs in the States that you could try? Is that even possible?
You’re badass for living like that for 2 years.
The drug that will soon be available in Canada is currently available in the USA. That’s how I know about it. 😊
I hope it’s available soon then!!
Fingers crossed!!
I have heard of an ear piercing with good resuits of getting rid of the headaches or lessing them.
Yes, a daith piercing. No science to back it up, likely just a placebo and it comes with a high likelihood of infection (and more pain) because it takes so long to heal. Also you usually have to respond positively to acupuncture. I didn’t. Also you need to find a piercer who know the proper placement. It’s tricky.
My friend had this piercing done, I was going to recommend it as well. She had chronic migraines until the piercing and even if it’s a placebo she has had no headaches since it was placed.
She is a nurse and has been for 20 years in various disciplines. If you’re interested to talk with her about it, I can share her info with you.
Seems that it would be worth exploring!
My cousin and I both did the daith piercing, no relief.
24 months 😱😱😱 I am so sorry that’s a long wait. I am not sure if they have CBD stores there but if they do if they have the CBD balm if you rub it on your temples or on the back of your neck it should help. Sometimes when my medication is not working I will try that and it works for me . Beat of luck to you . I feel so bad for you . Two years is a long time to suffer . 😢 Sending a big hug . 🤗
Yep, I worked with a doctor for two+ months trying to get CBD/THC working for me, did nothing for my pain but dampened the writing, so I stopped.
I suffered with chronic migraine for many years, finally trying as a trial, a low dose of an epilepsy drug, topiramate (topamax). It was amazing, I went from 3-4 migraine a week to 3-4 a year. Maybe something to explore, I empathize greatly with your situation Xx
Yeah, I have avoided topamax because of my reaction to two other ‘headache’ drugs. My system is weird. But the headache specialist might circle back to it.
Topamax moderately worked for me for a few years, but it caused kidney stones. So, off that!
When I think of socialized medicine it always seems like a great boon, but it seems there are always trade offs. Feel better and be kind to yourself!
Yes, overall Universal Health Care is wonderful. And very necessary. My case is just complex I guess. As headaches usually are.
I understand your pain in the doctor situation. My husband was in the same situation. His migraine neurologist kicked him back to our family doctor after 2 years as there is such a long wait list for people to see them (in ON). Lucky for us we have a great family doctor. Hopefully you pain will ease up soon. It is brutal to go through what you are.
Meghan, I was where you are with the daily chronic headaches along with Migraines thrown in for fun…
Aimovig, when it came out, is what my doctor prescribed, there is another but we started with this. I can honestly tell you that it works, I hope that’s the one you’re waiting on. It’s a once monthly injection that you give yourself. easy peasy.
headaches for me have been a 30+ year battle, finally there is something that takes them away.
I did four months of Emgality and three months of Aimovig. Neither helped.
I’m glad it worked for you though!!
I am so sorry to hear your latest news. I am in the US so I don’t know if this will help but I have some professional contacts at a few major medical/research centers and I have reached out to them to see if they have any MD connections at the Chronic Disease Clinic in Vancouver that could expedite your appointment. It’s probably a long shot but your post was heartbreaking. You have brought such joy to your readers, myself included. I just had to do something to try to help.
That’s lovely of you, Terry.
Meghan,
I heard back from one of my contacts. He is the CEO of a prominent neurologic institute in NY. He has a close relationship with the Director of the Djavad Mowjhadian Centre for Brain Health at UBC in Vancouver. He has asked her for help and has offered to speak to you to help “triage” the situation.
Please email me directly and I will provide further details and connect the two of you if you are interested.
Best,
Terry
Goodness, that seems like such an imposition. But I will email you for sure. Thank you!
Leo reminds me of Polou ;oD
If I woke up without a headache, I’d think I’d have died. Good luck with whatever relief you can find. It’s been decades for me but a sense of humor helps. That or being unconscious 🤷🏼♀️
Thank you for all of your wonderful stories; they help too xo
That is crazy, Lisa!! But yeah, I’m not sure what not having a headache feels like anymore.
I’m right there with you Lisa! I wouldn’t know what to do with myself if I woke up one day without a migraine!
It hurts my heart that you are dealing with this. The only help at my disposal is prayer and I will be praying hard for you!
💗
Arg, just arg. I know you’ve been through a bunch of stuff with this, suggestions and treatments, but any thought to it being related to issues with your jaw or teeth? Friend of ours went through migraines for years, and ended up getting her jaw realigned, (some teeth fixed, braces, minor surgery,) and that fixed it.
Hope you find an answer soon.
Dentist doesn’t think that is the issue. I’ve tried a night guard but it just hurt worse (for five days) so I gave up. Might have to get it tweaked?
Try tweaking the night guard. I was having the same issue. My dentist made me bring it back in and they tweaked it for me. It didn’t really help too much with the migraine, but my jaw doesn’t hurt when I use it now.
Keep trying and know we are all thinking of you. I finally got to go to the massage therapist and chiropractor today and I feel so much relief. Your writing does give us joy, but take care of yourself first!
I’m m so glad you found some relief!!!
Have you tried eliminating all hormone treatments? I also had chronic migraines which got worse when I took birth control pills. I refused to take hormones at menopause and my headaches gradually decreased. I now (age 70+) have only about one migraine a month and that one is mild.
Yes, hence the menopause specialist pretty much saying she couldn’t help me further. I’ve tried all the possible HRT (so transdermal bio identical, not pill/horse urine). I could try progesterone only but I’m pretty certain it increases the headaches as well (I tried a course of it while on the estrogen).
Traditional Chinese medicine has discovered a point in our body that when it is stimulated it promotes general well being.
This point called Feng Fu, is a pressure point that lies behind the head, at the base of the skull, at the top of the neck.
Feng Fu point
According to traditional Chinese medicine, the Feng Fu Point Method does not treat the problems of the body. In fact, this method, causes the body to return to its natural physiological balance – providing a strong life boost rejuvenating the whole body.
Feng Fu point ice app
Technique of applying an ice cube at point Feng Fu:
Choose a comfortable belly down position.
Apply an ice cube once or twice a day for 20 minutes.
If it’s more convenient, you can use a cloth or plastic bag to wrap the ice cube around.
After 30 seconds you’ll start to feel a slight heat at this point.
In the early days there is a possibility of a slight sense of euphoria due to the release of endorphins.
Feng Fu point
Changes you may feel when applying this method:
– Decreased headaches, toothaches and joints;
– Helps to regulate blood pressure problems (hypotension and hypertension);
– improvements in the digestive system;
– Improvements in your sleep and mood;
– Relief of gastro-intestinal infections and sexually transmitted diseases;
– Relief of neurological disorders and psycho-emotional disorders: chronic fatigue, stress, depressions, insomnia, etc;
– Inhibition of degenerative spinal changes;
– Improvements of breathing problems;
– Helps inhibit cardiovascular issues;
– Disposal of frequent constipations;
– Stabilization of thyroid disorders;
– Asthma attacks relief;
– cellulite reduction;
– Improvements of gastro-intestinal tract issues,;
– improvement of obesity and malnutrition related disorder;
– Relieving disorder linked to frigidity, helplessness and infertility;
– Improvements of menstrual issues.
I should have put this in with the post, i saw this yesterday and sent it to my daughter who also suffers from chronic headaches and has had no luck with conventional treatment. there was a picture also, showing the spot, but it is in that little divot where your skull meets your neck in back. might be worth a shot
I’m so very sorry you’re not getting results with everything you’ve tried. Our bodies are all different but I know it can be depressing when drug or treatment x worked so well for this person but it doesn’t help you at all. I hope your magical unicorn treatment is just around the corner for you! *Big hugs*
18-24 months is crazy! My head hurts for you! I have tried both Aimovig and Ajovy, with no success. A about a week ago, I had my second Vyepti infusion, and I’m actually getting relief. Not migraine free, but the pain level is only about a 2-3.
So sorry to hear about your headache struggle. My migraines are under control now. I’m on the monthly shot of Ajovy. In this migraine group I’m in somebody told me they take 3 Ajovy shots at a time every 2 months and thats the only way to keep migraines at bay. Maybe inquire more about other CRPGs? The triptans stopped working for me and made my headaches worse. Hope with a combinations of vitamins and good medicine you can find results like I did. HUGS!!!!!
I’m off all the vitamins except some magnesium. Nothing helped. I tried Emgality and Aimovig. The headache specialist decided Ajovy wouldn’t work since the other two didn’t.
I am simply amazed that with chronic pain you still are able to weave together worlds and adventures. May you soon feel relief from the stubborn constant headaches
I hope you get answers for your headaches. Keeping you in my thoughts and prayers that you get relief. ❤
I used to get migraines that were triggered by stress and 2 things that helped me were tennis balls and braces. (now i am picturing a tennis ball in head gear).
My PT once told me to put 2 tennis balls in a sweat sock and lay down with them at the base of your head (Feng Fu?), this helped release some if the tightness that gathered there. It helped a bit.
As for the braces, I was grinding my teeth so much that I had shifted my jaw out of place. So, got braces and now I rarely have a migraine.
Not sure if either would work for you…. but hopefully picturing a tennis ball with headgear will make you smile.
😊
I’m so sorry you’re still going through this and that it’s been so difficult to find a treatment that works 🙁