For many of us, daily medication makes our lives more tolerable – or simply possible. And yet, it is so tempting when they are working and you are feeling pretty good to wonder if the meds are working or whether you even need them anymore. This is probably one of the most frustrating things for healthcare providers – to have a patient who is being helped by their meds suddenly stop taking them.
In case you are wondering, I have never willingly done that. But, as you know, I am currently without Botox due to the complications which have arisen from transitioning my healthcare to Florida. It is now looking like I will probably receive my next Botox injections one quarter late. In other words, instead of receiving my injections at the recommended 12-week interval, I will likely receive my next injections 24 weeks after my previous ones, thus missing one entire quarter. Since Botox can take a while to build up in one’s system, and I will have missed a maintaining dose, I don’t know how long it will take for it to return to the levels/effects I was experiencing previously.
As Spousal Unit has pointed out, there *has* been one benefit of this forced discontinuation of my medication – it has demonstrated that Botox was, in fact, reducing my migraine symptoms and improving my quality of life.
Botox has been clinically proven to reduce frequency of migraines for (some) people with chronic intractable migraines. I have been very, very fortunate that Botox *has* reduced the frequency of my migraines! Prior to Botox, I had tried and failed many, many other possible migraine treatment medications. NOTHING had worked to reduce the frequency or the pain of my migraines – until Botox.
But I had begun to wonder… The first year that I received Botox, I could tell when it was wearing off – my symptoms and my headaches would return two-to-three weeks before the end of the quarter.
Wow, I just re-read that post, and I had forgotten how bad it used to be! Because, at some point after the first year of treatment, this stopped happening. At some point, I stopped feeling that the Botox had worn off. I stopped being able to raise my right eyebrow like Mr. Spock – ever. I stopped having to block off “Botox-has-worn-off-so-migraine-symptoms-will-incapacitate-me” weeks on my calendar. Because Botox was controlling my symptoms full-time, with no gaps.
I never, ever missed a Botox appointment, but I did start to wonder how much it was really helping me. That’s the tricky thing about human beings – we’re not really rational actors, even when we like to pretend we are. So, despite all evidence to the contrary, I started wondering if Botox was really having much of an effect. Perhaps I was having fewer migraines because I had changed my diet? Perhaps it was due to other new medications, or the new location?
Well, now I know. Botox *was* helping – significantly. I am now approximately 4 weeks late for my Botox injections. During that four weeks, I have been experiencing symptoms such as light sensitivity, noise sensitivity, fragrance sensitivity, dizziness, lightheadedness, and severe brain fog (cognitive dysfunction). Since I receive Botox injections in my trapeziuses too, those muscles tensed up again without the Botox injections, and now several of my ribs have subluxed and my neck has become painfully misaligned. As you can imagine, this is incredibly painful. I am spending most of my day every day with a heating pad on these areas, and sleeping is quite difficult. Parathesia has also returned, with strange tingling and/or numbness (for me, often at the tip of my nose).
At four weeks past when I should have received treatment, I have not yet had a scintillating scotoma or a trigeminal migraine. While I don’t mind the scotomas, I am grateful that I have not had a blindingly painful headache…yet. I’ll keep you posted as the interval wears on until my next appointment.
So what have I learned? Botox works for me, and I give praise to the merciful Lord for that! Also, I still need Botox. The reason my symptoms had lessened or disappeared is because the medication was working. I will never question that again. [Note to self: in the future, if I forget and have similar questions, reference these blog posts on Botox.]
More than that (as important as that is), I have learned that it is very common for people to discontinue taking prescribed medications without consulting their healthcare providers. For a good overview of some of the reasons people stop taking prescribed medications, see here and here. A significant number of patients stop taking medications or decrease their doses because they can’t afford to fill the prescription as written.
If you are having difficulty affording your medication, please talk to your doctor *and* pharmacist – they may be able to help. A less-expensive generic *may* help just as well (this is *not* true for every patient). Or you may be able to obtain some free samples or qualify for a drug assistance program.
Please DO NOT stop taking your medications without talking to your healthcare provider! There could be serious consequences for your health and safety.
One Sick Vet
There was a time when I tried a medication for my migraines (at my neurologist’s suggestion) that caused me to be clinically depressed. I lost a year of my life to that drug-induced depression, meaning that I laid on the couch and did nothing for an entire year. My family was very concerned, but my neurologist kept insisting that I “just give it more time” and writing more prescriptions to counteract the (multiple) side effects. Even then, I did not discontinue taking that medication without consulting a doctor (particularly because I knew that that medication could *induce seizures* if stopped cold turkey).
On a day when I had enough mental capacity and motivation (or desperation?), I called the base healthcare line. I told them of the problems I was having, and I played the only card I had left to get someone to take my problem seriously (and I was telling the truth) – I told them that I needed professional help to discontinue taking the medication (what doctors call “titrating off,” or gradually reducing the dose) because I was suicidal. They gave me an appointment that day, and that person referred me to a psychologist. The psychologist saw me for several sessions, but believed me that the medication was causing the side effects (including the depression) and also referred me right away to a psychiatrist, who could guide me in gradually reducing my doses until I was safely off the medication. Once the medication had left my system I was no longer clinically depressed. And I did not have any seizures, because we gradually and safely reduced the doses. However, to this day I remain angry that I lost a year of my life because doctors would not listen to me and would not believe me. Thank God I did not lose my life altogether.
TL;DR: There’s a “right way” and a “wrong way” to discontinue taking medications. ALWAYS talk to a healthcare professional before discontinuing medications. Also, paradoxically, between 16% and 25% of people discontinue taking medications because they feel better, so they think they don’t need them anymore. But, as in my case, the reason they feel better, most likely, is *because* the medication is working. Keeping a medical journal (or a health blog) can be a useful way to track symptoms and treatments, and to evaluate whether the treatments are effective (and to remind yourself of their effectiveness if that’s the case). Personally, I have both a medical journal *and* a health blog. 😉
How about you? Have you ever discontinued a medication? If so, why did you stop? Did you talk to your doctor or pharmacist first?
