Written by Lori Ann Kostich M.S. CCC-SLP
Mandell Center for Multiple Sclerosis Treatment and Research
“I don’t cough when I eat… I cough when I sleep”
This occasionally happens to me. As you know (because you’ve already read the part of this website on swallowing), Speech Language Pathologists (SLPs) treat swallowing issues. So when a patient says “I cough…” for any reason, it usually means an automatic referral to the SLP. When a patient says to me “I cough, but only when I sleep”, I do a swallow evaluation just to make sure there is nothing obviously wrong inside that persons mouth, or when they swallow food. Then I ask if the patient has a breathing machine (CPAP, VPAP- one that you wear at night and usually has a mask). And about 75% of the time the patient who “chokes” in the night, will say to me “Yes, I have one of those, but it is too loud and it keeps my significant other awake, so I don’t use it”. Or they say, “The mask is uncomfortable, so I don’t use it”. Or they say, “It’s broken”.
At this point in my evaluation, I usually sigh.
Then I ask the following questions:
1. How long have you had the machine and do you remember which physician ordered it for you?
2. Why did the physician order it for you?
To that second question, I often get responses similar to “I wasn’t breathing during the night”, or “I stopped breathing too much during the night”, or straight up “I was diagnosed with sleep apnea”.
So let’s go back to the issue of fatigue. If you have a breathing machine and are not using it, it might not be fatigue you are feeling during the day. You might just be tired because you are not getting good rest during the night.
Here is a link that talks in more detail about sleep apnea.
In this situation then, what can be changed to make you feel better? Consider using that machine again. If you haven’t used it for a very long time, you might want to take it back to the physician to see if the last setting you were using it at is still correct. If it’s broken, definitely take it back to the physician. When you are at the physician’s, confess to the reason you stopped using it in the first place. If the mask was uncomfortable, there might be another option. If it was keeping your significant other awake, have a conversation with your significant other. If use of this machine is important to your ongoing health, then you need to use it. Even if it is keeping them awake, you still need to use it. And you need to have a conversation about some kind of compromise.
When I speak to significant others of patients who have breathing machines, however, usually they ae very supportive, saying the noise of the machine is a little like white noise, and easy to get used to. Sometime, they also say the noise of the machine is better than listening to the patient snore, stop breathing, choke, snore, etc. all night. So, every couple is different… have that conversation.
So, this is one more issue that needs to be thought through when a patient says they are “fatigued”
Is this something you can change?
Lori Kostich M.S., CCC-SLP
Mandell Center for Multiple Sclerosis Treatment
This Blog Is Otherwise Entitled: You are all such unique individuals – sometimes we can only point you in a direction…
Multiple Sclerosis as a disease process is variable. As a therapist, I want my patients to take the best care of themselves possible. Most of my patients find it very frustrating that people who have MS (pwMS) also can have every other medical condition known - including (but unfortunately not limited to) high blood pressure, thyroid disease, broken bones, arthritis, strokes, injuries resulting from falls and accidents of various kinds, diabetes, Parkinson’s disease, cancer, headaches, vocal nodules…and the list doesn’t end.
In the current healthcare environment, we all have to see specialists, and each specialist may prescribe two or three medications. What this can mean is that many of my patients have a very “respectable“ list of medications (meaning long). And, adherence to this daily regimen of medications is important. Not taking prescribed medications (nevermind the MS DMTs- I’m talking about all the others), as prescribed, is not the best way to be taking care of yourself. You take medications for the benefits of the medication. Yes, there may be side effects, but side effects are not a reason to stop taking your medication…it’s a reason to go see your prescribing physician to see if there is another medication option, or if there is a way to manage the side effect.
There is really no arguing with any medical professional on this point. We expect all of you to be taking your medications as prescribed. As medical professionals, we all know that medications do not work unless they are taken as prescribed. As a therapist, these are four issues I address with patients…
Taking Care of Yourself- Knowing Your Medications
“I didn’t bring my medication list; you have it in your computer”
Never, never, EVER assume that communication between your medical providers such as your physicians, behavioral health practitioners, therapists and/or the offices that do your lab work, happens automatically. Yes, you see us all looking at computer screens these days, but DO NOT assume that we have access to each other’s records. Even at the Mandell Center, where we are lucky enough to have all services located on the same floor of the same building, the physician’s practices and the therapists do not yet document on the same system. It is in the works, but not yet happening. So we expect you to know your medication, why you are taking the medications, and which physician prescribed them. Also, it is important for you to know, as a consumer, that if the physicians and therapists you choose to work with are not part of the same healthcare network, they will not be able to view each other’s records.
It is also important that you have a clear list of your medications on you at all times. Why? Accidents happen. Whether it is a fall in the community, you get sick while you are traveling, or you have a heart attack (heaven forbid on all accounts), and you end up in an emergency room, you need to have a clear list of your medications and the phone numbers of the physicians that prescribed them. The medical staff treating you at that moment will need to contact your regular doctors and let them know what happened.
Where should you keep your medication list? When I am asked that question it usually means “Should I keep my list in my phone or on a piece of paper in my wallet?” As a therapist, I can help you figure out what works best for you, but I do care about how accessible that information is. If you keep this information in a password protected phone, is there also a place where your medication will be available if you are unconscious? (Not to scare you, but we all have to admit rotten things happen- daily- totally unrelated to MS) Like paper in your wallet? In your significant other’s phone, wallet or pocket? If you have not done this yet, print out the attached or create your own medication list. Take a few minutes and do this now.
Here is an example of a medication list. Click below to download the medication list example.
Taking Care of Yourself- The Finances of Medication Management
Yes, the healthcare environment is changing, we all have increasing copays and deductibles which we may not have had before. This does not mean you stop taking your medications. If you do you are only affecting your health, you are not proving any point. Do this instead…
Taking Care of Yourself - Non-Adherence to Medications Due to Side Effects
“I didn’t think it was doing any good, and it made me tired, so I stopped taking it”
“I felt better, and it made me have hot flashes, so I stopped taking it”
“It was helping, but it gave me dry mouth, and I didn’t like that, so I stopped taking it”
I can go on, but I think you get the point.
I am not a physician. I do not prescribe. But, I have watched patients be sent home from physical therapy because their blood pressure was uncontrolled (because the medication made them cough). I have had to send patients to the emergency room from my treatment sessions because they didn’t take their seizure medication (because it made them tired) and an event happened. I have seen patient’s gait become slower and less efficient because they didn’t take the medication prescribed for spasticity (because it made them feel funny). I have watched patients suffer with depression and anxiety (because they thought diet change and herbal remedies were enough, and the prescription medication made them tired). I have watched patients decline, and wondered if they would have agreed to take a DMT if they would have been able to maintain their function longer.
I am not a physician. I am not the person with Multiple Sclerosis. But I know that medications are prescribed for a reason, for a benefit. There are side effects, there may be risks. But, again, medications are prescribed for a reason, for a benefit. They are prescribed to help you take care of yourself. If you are dealing with a side effect, such as dry mouth (which means you may change how and what you eat), is it worth the benefit (you can leave the house with less concern about losing bladder control). Think before you just decide to stop taking your medication. What is different since I have been on the medication?
And, keep in mind, that for some medications, it takes weeks or months to get fully into your system. You start with a small dose and then work up. With some medications, the side effects are temporary. You need to give them time to go away.
If the side effects are not tolerable, contact your physician. Stay on the medication unless directed otherwise by your physician until you see your prescribing physician again. Don’t just stop. With some medications you can actually feel worse if you just stop. And then have a discussion with your physician- are there alternatives to the medication making you feel bad? Can you expect the unpleasant side effect to stop soon? Will changing the dose affect the side effects?
Don’t just stop your medicaton. Discus unpleasant side effects with your physician, you can decide together what to do.
Taking Care of Yourself - Non-Adherence to Medications Due to Forgetfulness
“I remember to take my morning medications, but not the evening medication”
“I get to the end of the week and look back and see I forgot to take my medicine twice”
“I get home from work and see that I forgot to take my morning medication.”
“I forgot to fill my pill minder on Sunday, and didn’t realize it until Wednesday”
O.K. Well, first a pill box of some kind is essential (I know some of you have injections, let’s talk pills first). It can be a one week box, a two week box or a box that holds a month’s worth of pills (28 slots). From and organization perspective, you have all your meds in one place, taking your medication becomes a quick one-step process instead of a multiple-step process of taking the time to open multiple bottles every morning or evening. It also takes less time to open a single slot in the morning than multiple bottles. Here are some examples of pill boxes. Again, you need to pick the one that meets your needs- that will help you take the best care of yourself.
Some have alarms
If your pills get separated from the pill bottles, here are some tools to help you identify what you’ve got.
Once you’ve decided on your pill box, you need to figure out how to get the act of taking your pills into either a routine, or use visual or auditory reminders (reminders you see or hear) to help you take those meds every day. I can’t tell you how to do this. I am not in your house in the mornings or the evenings. But, let me share some strategies that have worked for some of my patients.
Get up, take medication, shower, dress (pill box is on the bathroom counter
Sit up in bed, take medication (pill box is on bedside table), stand up, continue the morning
In all of these examples, the pill box was out and visible. So, stop and think, right now. Where could you leave a pill box so that you remember to take your medication every morning?
2. Examples of routines incorporating evening medication
So you see where this is headed. These are suggestions only, everyone has their own work schedules, their own established routines, and their own medication schedules. Consider trying to make a routine.
Or, if a routine at any time of day is too much for your household to handle (I raised three kids, I understand) consider using a reminder system.
The simplest visual reminder is leaving the pill box out where you will see it. The idea is when you see the pill box…you remember to take the medicine. If you need a back –up visual reminder, leave a note on your lunch box (which you packed last night), a sticky note somewhere where you will see it (maybe in your coffee cup which you washed and set out last night) or a note on the clothes you are going wear that day (which you set out last night).
Then there are auditory reminders, any thing that makes a noise to help you remember to do something. Old school auditory reminders are watch alarms, phone alarms, alarms on the microwave or extra alarm clocks. There are also phone apps that will help you remember to take your medication. There are many, and everyone has a their own operating system, so go into your own app store and search “medication” or “medication reminders”. A variety will come up, some free, some not. Choose one, enter your medications, set the alarms, and give it a try. If it doesn’t work, that’s OK. Do the search again and try another one.
Take care of yourself- take your medicine as prescribed.