We have absolutely no idea what’s causing them. I’ve been through 6 neurologists. We’ve tried eliminating or reducing my known triggers, tried to ferret out any other possible triggers, have tried every migraine medication that I can take (and lived with a lot of side-effects), and non-traditional treatments too. I’ve had multiple CAT scans.
I stay indoors almost all of the time in dark, quiet rooms. I wear welder’s glasses (under 1% light transmission) and a wide-brimmed hat to go outdoors, even when a passenger at night (car headlights are still a problem). I wear industrial headphones (like airport workers use) because I’m so sound-sensitive. It just what I have to live with.
It reminds me of Fibromyalgia that a friend has, and I do wonder if it is something similar (she also is light and sound sensitive). Do you also have exhaustion and sour muscles after just normal activities?
I have had severe migraines. Depending on doctors to solve a problem is a joke. I had to solve the headaches myself with some help from the physical therapist:
Bed: the harder the better. Futon if you really have bad pain. The largest part of my migraines came from a soft slatted frame. I didn’t have back pain but just headaches.
Hair: probably only a woman problem. The hair was too long and too heavy for a single hair clip. Shorter hair and 2 hair clips now.
Food is hard. Test for fruit sugar, salicylates and histamine. Both the salicylates and the histamine are practically everywhere.
Desk: I had to get a really short desk because I’m too small. Similar problem like the bed. If the desk is too high I get headaches. Desk must not face to the window because headaches. Sit in 90 degrees to the desk. My main shoulder problem was that I wasn’t sitting correctly. Just a centimetre or 2 and the shoulder hurt.
Chair: needs to be just so. Got a board for the chair from the physical therapist so that another body part than the back or the head hurts.
From the description of your symptoms I’d try a practitioner of functional medicine.
I had a teacher, genius, he also used welder’s glasses. He developed photophobia (light sensitivity and migraines due it). His body changed with the years. He could take the glasses off under dimmed light, and his little eyes were fit deep into two caves as if hiding themselves from the light. He lived his entire life under such condition since adolescence. He also did not find why.
I have a friend with Fibromyalgia, who reports a vast improvement in her symptoms/condition whilst taking cannabis drops (which you can legally obtain via doctors prescription in Australia). I remember it took her a while to hit a sweet-spot dosage (number of drops per day and time of day) where her symptoms were alleviated enough for her to experience a reasonable level of normality. I am not sure whether cannabis drops are available where you are, or whether they would help your friend or Dr Scott for that matter, however I thought it was at least worth mentioning as something to explore with their doctors. Disclaimer: this is not medical advice.
I bought for my mother a device to put on the hand like watch that sends constant micro-current signals to the brain. Its to fight all sorts of Migrane, motion sickness and other related problems as well as nausea due to surgeries. Same device is used in some hospitals.
I would recommend to look on the Website of luxxamed in Germany under www.luxxamed.de. Theese are the Microcurrent Devices for professional use with measuring System and controlled by kybernetic parametrization.
There are many causes of photophobia, including ocular inflammation due to infection. In my case, I started having photophobia in my teens, possibly secondary to moderate dry eye. The photophobia got worse when the migraines began. I’ve got a pretty good handle on my own photophobia due to my (and my wife’s) background in optometry.
I’ve been using the Cefaly device for migraines. It can help reduce the severity of the pain from my migraines at times, but does not help with the nausea, balance issues, aphasia, etc. Still, it can be nice to get a break from the pain a bit, so I’m not complaining.
Hi. Thank you for the suggestions. I’ve tried a many of these, including physical therapy and biofeedback, unfortunately with no success.
As a former scientist and clinician, I’m a little leery of alternative medical practices like functional medicine, but not totally closed-minded to trying it if there is good clinical evidence for it. I will read up about it and see the scientific literature about its efficacy.
i get bad migraines too but I am not as bad off as you. I feel sorry for anyone that gets migraines. I hope “they” find a solution for you that helps you overcome some of these challenges.
Apologies for the delay in replying. The answer I received was that there was no particular branded product that was better than another. Most of the products contain a combination of what are termed Cannabinoids, referring to the different compounds found in cannabis. The most notable cannabinoid is the phytocannabinoid tetrahydrocannabinol (THC), the primary psychoactive compound in cannabis. Cannabidiol (or CBD) is another major constituent of the plant. Both CBD and THC are found in various combinations in the various products. Products with lower doses of active ingredient, especially lower THC were available over the counter in pharmacies, and higher concentration products usually require a doctors prescription. Most of the products are liquid “drops”, but some are inhaled. Following advice from her doctor my friend experimented first with the lower concentration products before finding a mid strength combination that worked for her. It’s funny how (if a thing doesn’t effect you) you have almost zero knowledge of it until you ask. The things people go through, sigh. I hope that helps your friend on some level.
In Germany they like to prescribe dronabinol as cannabis extract with thc as working component. If you want to have all cannabinoids inside you’d have to ask your doctor for medical cannabis which you can use for pain release in a vaporizer and as cakes. In Germany we don’t have many methods and the only recognized medical working component is thc but also the other components are working. My doctor prescribes medical thc against my rheumatoid pain syndrome and it works for me.
yes. When I get one I can take 100mg of Imitrex and cry in a dark quiet corner for about a day. And if I am not doing better in a day, I can take another 100mg. Which is all over the recommended maximums but it works. while in the corner, I can only hope I can force myself to sleep (so the time goes faster).
luckily I tend only get 1/quarter, so it isnt too bad.
hopefully you find something to address your soon!
–sb
