Migraines

Posted by ladyjane85 @ladyjane85, Apr 26, 2016

For those of you with frequent migraines, not I, I just saw a good discussion and solution today on the TV program “The Doctors” April 26th if one has access to bring up the program on demand. There was a 15 year old with daily migraines who had 4 leads and a battery pack put into neck front and back and now has a good life. @ladyjane85

@annie2000

Keeping my spirits up while living with chronic migraines is a big challenge. After meditating for many years, I took the mindfulness class and now practice it most days. It has made a difference in coping with the pain and severe life changes I’ve had to deal with as a result of the migraines which really stole my life. Anyone else practice mindfulness?

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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?

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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!!!!

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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?

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@salena54

I have had migraines since I were 10 years old due to an accident I had,
and suffered severe head trauma. They are so bad I lose consciousness, and
throwing up the whole time. They can last up to 4 and 5 days. I usually
have to get shots to get any relief. I take Tylenol 4, every day with other
things. When I go to school once a month as an added bonus to what I have
majored in, my Dr. Will give me oxic. to be able to tolerate the pain. I
usually can’t stay no more than two are three days. With my injures came
arthritis in my neck, vertebras 1, 3, an 7 . I do go to the Chiropractor
twice a month to help my pain, I do get relief for a few days with it. I
will always have pain, so I do my best to find some type of purpose in
life, myself, and in helping others. I have an appointment in a few months
with my neurologist to see if I have MS. I was told that I could just be
having repercussions from the head trauma, like scare tissue, which would
cause the same symptoms. I have a lot of leg trouble and a hard time
walking at times and they are in pain at all times. They gave me muscle
relaxers but I just take them at night because I don’t want to be groggy
during the day, I’ll take it during the day if I can’t bear it. I hope and
pray you find something that will work for you. Because when the head is
sick your whole body is down.

salena

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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.

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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

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