This is a story that is easy to share which is good because I felt it necessary to do so.
This morning my honey nut Cheerios tasted like butter. In fact I can still taste it in my mouth. No matter how much water or coffee I drink it doesn’t seem to want to go away. Normally this would not bother me as butter and salt are things I crave on the regular even if I don’t let myself indulge. But today I certainly didn’t want butter to be the first taste of my day.
It was so surprising I had to actually force myself to keep eating as I needed to coat my daily morning preventive meds I had already threw down my gullet. Acid reflux is a daily moment-to-moment battle as I try to balance the needs and wants of my head and stomach despite what I actually feel like having. Most of the time my head wins and my stomach, thus my life, looses. It is like my own personal version of the Hunger Games occurring within my body.
To anyone else this butter flavor but have been concerning but for me I knew what my problem was. I knew the almond milk hadn’t gone bad and no the cereal was expired either. Nope the problem was me, more specifically my migraine brain.
I have a bad habit of saying my head or headache when what I really mean is migraine and the neurological disease in my brain that affects EVERY single thought, breathe, and movement I make. Perhaps I should also say the thoughts that I know are somewhere in the recesses of my brain that will not form into actual words any time soon if ever. Words are often on the tip of my tongue until I let it go. The words won’t come usually at all so I hope that the person I am talking to can guess from the random things that are coming out of my mouth what I mean. Ironically enough I am usually better as the guesser when playing this game but when I am the foggy one this skill is nowhere to be found.
I share my story every day on this blog. Every single word is true, at least at the time of the posting. I mention my migraines and some of the effects as mere sound bites when the focus is on an event, place, or someone else. But they are so much more than that to me and those who are in my life.
It has been sometime, apparently not since June 2015 (http://bit.ly/2e8chn0), that I wrote a blog exclusively discussing my health so I knew this was warranted. Although I am in a new phase of my health, the best it’s been in several years, there are still struggles. Daily, serious, struggles at that.
Even if I say the words describing the hell I feel on the inside (and probably outside) it never seems to bring the reaction on someone’s face I hope to see. Sometimes I get an “I don’t know what to do for you” or “oh God that’s awful” but it’s not really about anyone but me. There is no correct response or reaction mostly I am talking out loud to myself, to my head. Trying to figure out the why, how, and when of what I am feeling.
In July of this year I finally took to my MacBook to write a post that was a long time coming. That is usual for me but what was rare was the topic, fentanyl (http://bit.ly/2eROyqd). I don’t think I have ever really written about the drugs that I have taken over my decade long battle trying to access my best course of treatment. But I couldn’t take one more article describing how many people were dying as a result of taking it. They were likely heroin users or other substance addicts but they were in no way aware how much MORE lethal fentanyl is. But I did.
I have heard it time and time again from doctors that I have a very clear understanding of my body. After so many years of tracking my daily pains as well as physical and mental activities in my migraine diaries I have certainly learned a thing or two from the patterns that have emerged. That’s why I am talking out loud so much. “Ok my right thigh is numb. Why are my hands suddenly purple? I feel like I am going to pass out.” They aren’t so that someone nearby can help it’s so I can stop and pay attention to the symptoms.
At this point in my progress the odds it’s a stroke are rare but that is a real concern for someone suffering with chronic migraines as I do. Is it a reaction to something I took? Has any part of my routine changed? Depending on if it’s a new feeling or how severe I attempt to access if I need medical care. Usually I can deal as I am allergic to practically nothing. But believe me I know before a reaction shows when something is about to go wrong.
When you spend each day and night living the way your body insists you do otherwise you will pay, you become quite attuned to listening. That’s how I discovered I have been going through withdrawal for the first time in my life. Hopefully it’s the last.
Oddly enough I have learned that you can experience withdrawal off of prescription drugs that are not technically addictive. By that I mean they are not narcotics but apparently my body wants what it wants when it wants it. I just never thought it would behave so aggressively when I decided to go another way.
As I said I have been doing much better this year. I believe 2013 was one of the worst years of my life, health wise, so it’s been a battle coming back from that. I am well aware how lucky I am for this progress and that I live in a city with a practicing professional for chronic migraine disease. Let me be very clear, it is no stroke of luck that I am doing better. Without this doctor, without this facility- Montefiore Medical Center (Headache Center), I would not be doing this well. The rate of suicide for someone with my illness is one out of four patients. That never escapes me.
As my doctor and I decide my course of treatment every few months during my visit I also receive a round of Botox that isn’t for the faint of heart. Botox has literally saved my life. It has made the biggest change for me but everyone is different. Obviously if you are allowing botulism to be shot into your head, face, and shoulders every three months the benefits have to outweigh the risks. But this isn’t just about the Botox exactly.
Since that has been my main course of treatment I have been able to lower the amount of preventive medicines I take each morning to around nine. I started someplace around twenty and also had afternoon and night meds which I no longer take. That is a HUGE success and I am grateful for it. Last year I was able to eliminate one of the most crucial parts of my routine. I was so hesitant to stop because it was one of the very first drugs that worked for me but as my doctor pointed out we didn’t know if it was still doing any good for me. I was at a very high dose so I had to be weaned off of it slowly.
These fat and sweaty pills as I called them because of their side effects, turns out were completely useless! We don’t know when they stopped working for me but I can tell you that since I weaned off of them in March 2015 I have lost over seventy pounds WITHOUT watching what I eat or exercising like a madman. I also no longer sweat like I have malaria. I am still heat sensitive but that really only makes my face red, which is also the result of my Irish skin. I cannot put into words properly how this spun my life around three hundred and sixty degrees. From there I had no fear, just an ambition to see how low I could really go, which brings us to the past two weeks.
I decided that one of my meds, another form of an anti-depressant that I was only taking twenty milligrams of should be the next pill to come off the rotation. Twenty milligrams seems like nothing! Although I had to wean more carefully than I thought- two weeks at ten milligrams followed by two weeks at five milligrams- I expected to be fine. I mean my body loves botulism for God sakes! But no such luck.
The first week was not so bad I hardly noticed any changes. But when week two rolled out I noticed something was off. I was tired much more than usually despite sleeping longer each night than I usually do. In the mornings after taking my pills I didn’t have the energy I can usually muster. At first I thought maybe my thyroid gland was acting up again although I had just had it checked, because yes I have a problem with that too. But I didn’t think that was it. Finally I had to admit that maybe those twenty milligrams a day was not something my body wanted to part ways with just yet. Then I free fell down a manhole.
Thankfully not literally but that’s what it felt like. I felt like I had a terrible flu but without the pain. The pain in my neck and shoulders feels like fire burning within that renders my arms and hands ineffective. You have no idea what it took just to get dressed let alone out the door to work. Truthfully I have no idea how I did it and saying that because you have no choice didn’t make it any easier. I was worried I would have to return to my normal dosage and called my doctor. She said to see how the next few days went.
I was adamant I wanted off that med but at what price? If my health was going to plump it because of my insistence, then I knew I would have to give in but not without a fight. That’s when I Googled my drug and withdrawal to see what popped up. I NEVER do this or read the side effect literature that comes with my pills. If I did I would be all consumed. Instead I trust whatever my doctor tells me to watch out for that is serious and take it from there. So what I was reading online was shocking and terrifying to say the least.
Due to the lack of funding and research migraine drugs are not for migraines. They are classes of pills for other illnesses that had a side effect of helping migraine patients, just like with Botox. Taking anti-depressants is pretty standard. However this was what my problem appeared to be. For some reason coming off of this one was making my serotonin drop quickly, hence the withdrawal. I felt like I was a reformed crack head but without methadone to help. I was hot, cold, shaking, and EXHAUSTED. I didn’t feel like I was in my own body. I felt like everything was blurry on the inside, which is ironic because being on this drug was making my vision worse.
Dr. Paul Shanahan and Dr. Manjit Matharu of The Headache Group and The National Hospital for Neurology and Neurosurgery in London had this to say on The Migraine Trust website:
“The only way of treating this condition is to stop the medication. The withdrawal process is very individualized, based on the types of drugs you are taking. Some people will stop the drugs immediately, others may taper them and others may even need to be hospitalized for detoxification under medical supervision….. Cessation of abortive medication can result in a range of withdrawal symptoms: for many, the most obvious withdrawal symptom is worsening of headache, though this may be temporary and in many cases, after an initial period of worsening, the headache will improve simply as a consequence of withdrawal. Other withdrawal symptoms include nausea, poor sleep, restlessness, and tummy upset or diarrhea (particularly if withdrawing from constipating drugs such as codeine). These symptoms are transient, though they may last up to a few weeks. Getting through this period of withdrawal requires willpower and commitment, and is probably helped by understanding the transient nature of the symptoms and an awareness that further treatment for the headaches will follow the withdrawal period.”
They are spot on in their description it is like they are going threw it themselves.
Below are the links for this entire article as well as some celebrities sharing their migraine journeys.
Blessedly after a few bad days I started to come around. Unfortunately this is happened right before I had a severe attack this past weekend, which left me with a nice size migraine hangover just in time for me to go down to the five-milligram pills. That sucked. Despite how I hate the withdrawal that migraine was a bigger bitch and I am happy she left town. I haven’t felt that bad in months.
This week the withdrawal hasn’t been too drastic yet. It comes and goes and by nighttime I am useless. It is frustrating but I am cutting myself some slack and doing what I can until it is out of my system once and for all.
Do not ever be afraid to be your own best health advocate. Only you will know what works, what doesn’t, and what’s worth it.
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