Migraines

Hello @annie2000, welcome to Connect. I see that you posted in the Chronic Pain introduction as well, and I am glad to see that you found your way to a relevant discussion to your experiences. You said that a mindfulness class and now practice that most days. Do you mind sharing a bit more about that? What was the class, what sort of things do you practice?

I have suffered from migraines since I was 10 (that's 39 years ago), I was put on so many different drugs that I would go to the pharmacy and the pharmacist had not yet heard of the medication!! That is when we finally said they are using me as a guinea pig and I continued just to suffer through them for years. Then when I started seeing a pain doctor for my CRPS (Complex Regional Pain Syndrome) he saw that my chart said that I suffered from migraines and we had a discussion about ALL of the new meds that were now available that may help. He convinced me to try Botox, that did not work for me. He then asked if I would be happy if I could just nip them in the bud before they became full blown. I of course said anything that keeps from causing me days of migraines would be great. He then prescribed me Cambia (Diclofenac), it's a powder that comes in separate envelopes per dosage that you mix with a defined quantity of water....I take 50MG with 50-60 ml of water (sorry that's metric). It honestly tastes like drinking Alka Seltzer!!! But I would say it works for me about 90% of the time (actually could be a little higher because I don't always get to take it in time. You need to take it at the very onset of the migraine otherwise it won't work). It is not always possible to mix the powder when the migraine first starts, is the only drawback, but I will take that over having nothing to take that is that effective!!! As with most medications, it will not work for everyone, but in case you haven't found your relief and have not tried it.....may be worth checking it out. ...
BTW if anyone can find the same relief for me for my CRPS that would be better than winning the lottery for me!!! Like a lot of you who rely on pain meds for your chronic pain...I do as well, along with about 15 other medications that either address other issues caused by CRPS (i.e. leg cramps) or to manage the side effects of other medications!!! We too are suffering from the current epidemic use of opiates, narcotics & just recently heroine in some of the major cities in Canada. As a result I have personally been treated like a drug addict on two occasions that I was taken to hospital by ambulance, both by the EMT as well as the emergency doctor! They had not heard of my condition so they treated me like it was fictitious instead of asking me more about it or doing a little research. They treated me terribly each time I went! I also at one point was shopping for a new family doctor (which is not an easy task in a lot of areas in Ontario, we have had shortages).
I went to two doctors and they both said after reviewing my meds, that they would have to take me off all of my pain meds first before they would agree to see me!!!!!!! Again they did not even take my condition into account. I asked the first one if she knew what CRPS was and she said she knew all about it. If that was the case she would not have asked nor expected me to agree to go off the pain meds. As someone mentioned in this thread a while a go people with chronic pain do not get the "high" that other people may get from such medications. I am not sure what the reasoning is behind this but they just don't!!! Though sometimes I wish you could get some kind of "high" because sometimes I just would like to escape the pain!!!!
My girlfriend keeps asking me if I have tried the medical marijuana but I keep rejecting it because i figure I am already maxed out on the amount of pain meds (including dosages). Actually with the latest guidelines I am way over!!! I think I currently am only getting away with it because I have consistently been taking them for years ( Hydromorphone - long acting and breakthrough, Fentanyl patches, in conjunction with Duloxetine & Pregabalin.) I am not sure also if they are extracting the THC prior to prescribing up here or not.
The only thing that I do know is that I CANNOT live the rest of my life with this condition, especially if they withdraw the pain medication. Even in knowing this the Neurologist I was seeing in trying to get approved for a surgery that may have eased the pain greatly, turned me down, after originally accepting me and even had the MRI so he knew the condition of the spine and location of my L ? can't remember which one. Mainly I believe due to a new doctor that got involved that did not believe in CRPS. She told me first that I had RLS....which I have no relation to at all!!! Then she said that I definitely had "something" but she did not know what!! However, she was not willing to accept me due to the "risk" involved (??) When asked what she meant she said that I was maxed out on pain medications and she was not comfortable with that.. Well guess what? Neither am I, that is why I wanted to at least try the surgery (they are the only hospital that provides it) !!!
So I am damned if I do, and damned if I don't. Not suppose to take pain meds, yet they won't give me any alternative.....Except live with the pain!!!!

Hello @jorenae, in the Chronic Pain introduction discussion you said, "I have chronic migraine with an average of 20 migraine headache days per month and a non-stop "base" pain at all times that I don't even count as a migraine headache. I've had migraine since I was 11 and became chronic about 10 years ago. Each day is a battle."

I am tagging you in the Migraines discussion because I would like to introduce you to @sharonmay7, who just posted about her relief from migraines from getting botox after years of various treatments not working. You both discussed migraine days numbering in the 20+ range per month. @sharonmay7, would you mind sharing with @jorenae your recent success with getting some relief?

Be extemely careful with the Tylenol. I was taking it so frequanely that I had elevated liver enzymes. I was off it 1 and 1/2 weeks then had labs done again. Now the enzymes are normal.

Hello, I am trying to find a group that discusses "weird migraines" I do not have migraines very often but when I do I end up in the hospital because it seems like I am having a stroke. I have only had this happen twice, have been hospitalized both times, stayed for observation both times and after many, many test nothing could be identified and a lot discounted. I have had neurologist do test and nothing seems to appear that would cause the very painful and scarry headaches. I hope that someone may be experiencing this type of situation. usually about three days in the hospital, and given "headache coctails the pain goes away, but I feel foggy and weak for about a week. I am very anxious about it happening when I am by myself. I cannot function, talk, walk, and the pain is terrible. I have a lot of chronic pain issues, and I believe that I know about pain. Anyone have any advise of how I can talk with? Thanks..Peace & Love JJ

...going to add some of my story later but just wondered if you could contact your Provincial College of Physicians and Surgeons about the way you were spoken to, treated, by registered Doctors? ...especially when treated like a proverbial "drug addict" etc.... not right! I have had occasions when I could have reported doctors but didn't, but now wonder if for the sake of other patients, should have! I really am glad I found this .org site but find it hard imagining so many people on here who are living with pain every day.... I am almost to that point and not sure I can continue some days. Or perhaps contact a teaching hospital... hope you get some more ideas on here from people who know how you feel!!! J.

Hi... had migraines since around 12 (and think had them before) and am now 77 !!!
At first I didn't notice, I suppose, the visual aura, but the headache and boy was it bad and frightening for a child. Mum gave me an aspirin and I went to bed alone of course... it was always on one side of my head and am not sure if I lay there crying or what..... or for how long but seemed a long time, for a child, then threw up (vomitted) and was OK. Not sure how many I had til Mum took me to local Dr.who made diagnosis.
Long story short then had them rest of my life ... ALWAYS with aura first. Yet I was not a "heachachy" person and rarely had a normal headache. The vomiting stopped at an age I dont recall but probably as young adult... and many times had to be driven home from work or take the bus to lie down, again only Aspirin, but could not see clearly and the pain was bad, one sided. Later could not see to drive.

The aura starts as a tiny part of vision is off and then its a tiny spinning almost circle, and a Dr. once said be glad you get it as a pre-warning of pain; but its scary. The circle is like tiny ZZZZs and VVVs joined together and i put cold cloth on eyes dark room and the circle gets bigger and brighter and moves and jiggles around for about 20 minutes and goes out of my field of vision. Odd that I think around by 40's I got the "aura" but not the bad headache... just when aura left felt a bit out of sorts. But before then the headaches lasted hours and two young children to look after during it all... and the post migraine ache.

But a Dr. then gave me my first migraine meds: Cafagot PH - think thats how it was spelled... Cafagot given go women miscarriaging that shrunk the bleeding blood vessels or so I was told and phenobarb. Well I am scared of meds and just took one; but one day I took the recommended six a day and couldnt wake up to go to work! So I decided I would not take any prescribed meds and just took OTC's also tried to pretend the flashing light were fireworks!

From then on I get/got about 10 or more a year and in fact 2 days ago got 2 back to back, one last week and 2 weeks before 2 more back to back. What is happeninng now is: sometimes during or after I have one I have memory loss: while lying there waiting for aura to stop, could not think of my relative's first names; another time, could not think of the medications I am on; recently could not think of my doctors' names.... very unnerving and once went to emerge had ct scan but told not a stroke.

I understand these are now called ocular migtraines and I never stop feeling scared when my eyesight is affected, especially since a few years ago being diagnosed with Glaucoma.

My thoughts go out to everyone suffering, I remember the pain. I too was around 12 yrs of age and find many adults got them pre-teen - hormones? genes?

Anyway, just my overly long story but probably will get them til I die and although the wicked PAIN has stopped, now I have a host of other illnesses (had cancer, have P.N.,24/7 tinnitus and ear pain, hypothyroid, tmj, ibs-d, fecal incontinence ... and often wonder if I was "born to be ill" or just unlucky - as a Pain Specialist once described it to me .. said I had been dealt a bad hand of cards!!! Imagine!

Take care and I hope you find some help soon... life's too short to suffer but seems if its not one thing, its another!!! I do not know a lot of people/friends but any retired all have one illness or another, or lots .... I am thankful that things were not worse but bad enough... but whereas I used to bounce back, that bouncing ball has no air in it any more. Best of luck and best wishes for a medical miracle so you can again enjoy "life." J. (sorry to ramble)

Botox has helped me reduce migraines from about 5-6 per week down to 2-4. Adding the Emgality injection has been a game-changer for me. My migraines are less intense and less frequent on the Emgality. I’m thinking about going longer between my Botox to see if the Emgality is enough.

For rescue meds, the triptans knocked me out for 2 days. I’m using Nurtec now and it too has been life-changing. Far fewer side effects.

I’m in perimenopause too and pray my migraines will reduce or go into remission once I’m on the other side.

Hello @oceanblue and welcome to Mayo Clinic Connect. What great news for you that Botox has helped you along with Emgality injections.

How long have you suffered from migraines?

Hi well a year has gone by. GoodDrs referred me to out of town neurologist i had seen before about the memory loss after migraines...had about 20 last year. But 2022 not as many and it seems just as I think oh havent had a migraine for a while, iget one! Anyway, last August neurologist said not to worry about the memory loss type thing but I did tell himabout odd frightening other attacks at home and long story short he ordered mri and I had small stoke April 2021. Anyway, today again ocular migraine and again after vision cleared could not remember names of friends etc., and got upset but as before as time went on names came back, i phoned daughter to come over as panicked... just wondering 'why' not thinking clearly after a migraine/ Anyone else?? I had ct scan last spring and have results here somewhere saying white matter.... but no follow up as had no family dr. and now nurse practitioners too busy as more serious issues other people have who are waiting for treatment but I do worry as Mum had Alzheimer's for many years an I don't want that life.... j.