5 Strategies to Deal with MS Relapses

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Learn 5 key strategies to deal with MS relapses. This will help you to more equipped to plan and manage the next MS relapse when it occurs. Jen DeTracey shares her story and experience.  

TIP SUMMARY 

Tip #1 - Track your relapse details

Tip #2 - Know what works best

Tip #3 - Know what doesn't work

Tip #4 - Have a plan

Tip #5 - Ask for help

[Full transcript]

 5 Strategies to Deal with MS Relapses

In this blog, I share with you five key strategies to deal with MS relapses. If you live with MS, you know what I'm talking about, depending on where you're at in the spectrum of relapse remitting to progressive or primary progressive.

I'm Jen DeTracey. I am the founder of Women Thriving with MS. I help women with MS go from feeling isolated, discouraged, and surviving to connected, empowered and thriving. I do that through the Women Thriving with MS YouTube channel, Facebook page, Facebook group and the membership weTHRIVE as well as coaching and online courses.

I knew that when I came to Greece, that I needed to be prepared for this trip in case a relapse happened. That's exactly what took place. The main relapse that I experience that's consistent is vertigo. What comes with with the vertigo are headaches, massive, brain splitting headaches.

Also, I feel nauseous and get a some blurred vision. It's not as bad as it used to be for some reason, which is great. I have some special items in my toolkit that I use to help support me in managing my life while I'm moving through each relapse.

About half way into my 70 day trip in Greece, all of a sudden I started to feel very nauseous. At first I thought it was this liquor that I drank. It's funny because I'm not a drinker. Alcohol has never been something that feels really good after ten to twenty minutes.

I love a glass of red wine but it's just not worth it.

In Greece, I was at a restaurant and my sweeties relative cousin of a cousin. In Greece, you get treated to a meal by family who live in Greece when you come to visit.
There's a lot of generosity there. So there was so much food.

Then there was this alcohol and it's very strong and would be like drinking a shot of vodka, for example, white clear liquor. I can't remember the name of it in this moment.

I put it into a tall glass with bunch of ice cubes. Then topped up my glass with water. There I was taking little sips. I did this to express my appreciation, even though in my gut, I knew that was not good.

The next morning I was doubled up in bed, I felt horrible. At first I just thought, this is a hangover. Has it ever happened to you where you are moving into a relapse yet there's other things happening in your body, and you're like, oh, maybe it is this. Or maybe it's that.

Well, this is what took place for me. It wasn't until later that day, when I realized this is a vertigo relapse. I actually had a little bit of a sign it could be a relapse a few days before yet wasn't sure.

Now here I was in darkness. The curtains in the hotel room were closed tight. I didn't want hear sounds. I was curled up into the fetal position.

It was really horrible. I had a massive headache, which is also related to a vertigo relapse for me. These headaches can happen the whole time I'm going through a relapse.

Fortunately near the end of the relapse, I didn't need to take anything for my headaches. So that is great news. I did get through it all.

What I want to walk you through today are the five strategies that I put in place before taking this trip. Things that I knew I needed to bring along with me.

Before I get into these tips, let's start at the beginning, because if you are new to being diagnosed, you may not have a rhythm or a knowledge or an awareness around the probability that you're going to have a certain type of relapse over and over again.

I'm speaking from my own experience and I'm not a medical doctor. I'm a woman who has been living with multiple sclerosis for over 11 years. In the beginning, when I was experiencing vertigo relapses post-diagnosis, they were so bad. My vision was severely blurred and my depth perception was so off that I could not even leave my house.

The brightness of the sun and the leaves and the flowers were too much stimulation. The cause of this MS activation happens due to a lesion on the vision center of my brain. It's not an ear thing. It's a different kind of motion sensitivity. So yes, people can have inner ear issues, yet alternatively with MS be a lesions connected with the vision center in the brain. I have a lesion that impacts me.

At the time when I first started having vertigo relapses, I didn't know what to do. I just lay on the floor of my living room or in bed and listened to audio books for days at a time. Then when I started to feel a little bit better, I would go out at night when it was dusk or dark out.

Weirdly, I felt like the cars were really close to hitting me and I knew my peripheral vision was off. This happened early in my diagnosis. I was in so much crisis about being diagnosed at the time and I didn't have any reference points.

Looking back now, over 11 years later, it's so much easier to talk about this now. What happened over time the vertigo has become less debilitating. Back then it was the school of hard knocks for me when I had the worst vertigo relapse in the first few years. At the time, I was taking gravel about four to five times a day. I didn't realize that you can overdose on gravel.

Vertigo relapses back then and to this day, start off slow then build and build until it peaks. Then once it peaks. I learned this from my neurologist. There's a point where it will peak and then it will start to drop, but you still feel horrible.

I had peaked during this massive relapse. Then it started to drop off, but because I was taking copious amounts of gravel and it was building up in my system, I actually was still having vertigo like symptoms. I was feeling very spaced out and dizzy and disoriented. I actually went to emergency and they told me you've overdosed on gravel. I didn't know that.

I had asked a friend to drive me to emergency. I found out that I was taking too much gravel. That was very useful to know. I also found out that there was a medication that I could take. It was quite expensive, but they had given me a couple of pills and a prescription. And I took that and it helped. So that was good news.

Then my mom who happened to be visiting me told me about something called Meclizine which really helps with motion sickness but doesn't make you drowsy. She said, I can give you some of it. I can't give you all because I might need it in case I get motion sick but you can try it out.

It was a saving grace. It was like the sky had up, the sun had come out and I was able to function even in future vertigo relapses. The challenge for me, the biggest challenge was that Meclizine known in the USA as Bonin. And there may be other names for it. I can't remember what it's called in the UK.

There may be other places in Europe. Meclizine is not available in Canada. What did I do? The next time that when I, when I got a relapse, I had to go across the border to the USA and buy some. But at the time I didn't realize that I could buy generic, generic, meaning cheaper, a no name brand and buy it in huge quantities.

These are chewable tablets that I bought. They're come in bottles of a hundred. So now what I do is I would buy two of these bottles so I have 200 chewable tablets on hand whenever I need them. When I begin to peak in that vertigo relapse, I start taking them. I take the maximum of four a day.

Which I try and stretch out this dosage because taking more is not a good idea. Meclizine has been a lifesaver. It changed my ability to manage this vertigo relapse and and be able to function bette when I have one. Now you may have different kinds of relapses. Again, I mentioned I get bad headaches. They may even be migraines. They're just really excruciating.

What my neurologist told me to do, she recommended two extra strength Tylenol, and one extra strength Advil (Motrin). I like the gel because it goes in quickly, but you do need to eat before you take it because Advil is a very hard on the gut. So I take this that power packed painkiller combo. Most of the time it works until I need another dose 6 or more hours later.

Now, I don't know how many years it's been now. I would say probably maybe seven, maybe even eight. I started going to see a homeopathic doctor. He tested several remedies with me and he discovered that there was a specific remedy that helped manage the vertigo better.

It's what know as my constitutional remedy. And that can shift over time when you're doing homeopathic treatments. I take homeopathics regularly. The constitutional remedy is for emergency purposes. When I was getting ready to go on this trip to Greece, I made sure that I had Meclizine. Unfortunately I just barely have enough. I'll tell you more about that in a minute or two.

I barely have enough, but I was able to squeak through with what I had. And I looked up what I could get over in Greece. I'll circle back to that. As soon though, as I was fully aware, yes, I'm in vertigo relapse mode. That's when I took out the heavy guns, this little test tube, again is the constitutional remedy.

It's like little tiny beads. I put them in half a cup of water and I drink it. It's quite strong. It's about almost five times as strong as the ones that I could take if I need them just on a periodic basis. And I take one tube each day for three days of this remedy. And what it does is it doesn't take away the vertigo,

but it busts through it faster. So what I mean by that is, let's say that it takes seven days for the vertigo to peak. If I were to just not take anything homeopathic or, or I wasn't taking steroids, for example, these are steroid tablets, then it would then take seven days to come down.

And then it would kind of like have a waning period.

So that's like 14 days plus that residual tail of the vertigo at the end.

What this homeopathic does, is it speeds up the process or pushes my system to the peak faster. So I probably noticed, I would say that it was maybe day two or three, that I was on that journey of going up.

So by taking that homeopathic within a day, I was peaking for a couple of days, and then it dropped down much faster on the other side.

So it's not it's a magic pill in which everything goes away but it does move the vertigo through my system faster so that I can function better rather than be curled up into a little ball and want to just sob and lock out the world.

That's good.

On this trip, I had my motion sickness pills. They are non-drowsy. Non-drowsy very important for me. My super power homeopathic I get from my homeopathic doctor. He to figured out what was best for me.

I also brought with me this prescription. I carried them with me when I traveled, they are prednisone pills. I do not like to use it unless the vertigo is extremely serious, like an emergency where the left side of my body left isn't working, which would be similar to when I was diagnosed.

If something like that happened, I'd be all over the prednisone. I know though from experience, I'm doing drip, for example, that I felt crazy. In the past it sent me to an emotionally bad place. I wasn't able to sleep and was angry and sobbing. It was very difficult. Now, of course I had just been diagnosed at the time. So maybe now after 11 and a half years later.

I much more emotionally stable now. This just an emergency to have on hand, because you just don't know. Maybe I could have different kind of relapse. Maybe something else could show up for me. The other thing I do while I'm traveling is I buy medical insurance so that I would be prepared for an emergency because I'm not going to be paying a big bills while out out of the country.

So yeah, if you are traveling note to self. I think it's really important to have your emergency kits on hand. This is the planning part. I'll circle back to the five tips because I basically am telling you my story first.

The last thing I want to say in terms of my emergency kit is that because I was concerned about running out of Meclizine for motion sickness. What else could I take? In Greece there's something called dramamine that's supposedly similar. So while I was in this tiny little town, I asked a pharmacy if they could give me some. They told me, they had this as travel gum.

I've never taken travel gum before. They told me to put it in my mouth, half an hour before traveling. Chew very slowly. Well, what this travel gum did for me is it froze my mouth and it tastes horrible. I don't know if it helped or not. I just used it a couple of times when I was getting on a bus or a train.

I was trying to stretch out my Meclizine so that if I needed to use Meclizine for a prolonged period of time, longer than I expected, I had enough on had.

So let's go through the five strategies now. Number one is tracking. It is so important that right from the beginning of when you start to have your relapses, when you live with MS to start tracking them as soon as possible.

If you haven't yet, that's okay too, you can start now. I know it can be every three, four, five, six months that I could have a vertigo relapse. Sometimes there's been a space of a couple of years where I haven't had one, but that's very rare.

I know I need to keep my emergency kit on hand. When you track, track when the relapse started, what happened during it? What symptoms you are having? How long is it lasts? Those are very important.

When I was first diagnosed with MS and I lost the ability in the left side of my body, it was a very different situation than vertigo. I don't know if I would say it was a peak in the same way, but there were signs leading up to that particular relapse.

There were signs and it just got worse and worse. And then I went into the hospital and they gave me steroids and it went away. So that's a very different situation and your situation may be entirely different too. So just imagine yourself at home, you're living your life. You have a relapse, whatever sort of relapse that might be for you.

You track it, you put down the symptoms of what you're experiencing. How long did it last? Also, how often do they have for you? Are you having them once a year to every second year, five years or every three months? What does that look like for you? What's your rhythm with having them? I knew that there was a possibility that I would have vertigo relapse while I was traveling because I'm away for 70 days.

SI hadn't had a vertigo relapse in a while. When there's stressful things or change environment, it's more probable it's going to happen. Even if it's fun to be adventuring, there's a lot of change. There's a lot of adapting. So that's a factor. That's number one, track.

Number two is know what works best for you.

For me, it's about resting. It's about taking the motion sickness pill, Meclizine four times a day. It's about making sure that I have that homeopathic crisis emergency remedy that I can take, because that helps me get through it. When I start getting a lot of headaches over a period of days,
I'm moving towards that relapse.

I need my Tylenol extra strength, and I need to be well stocked up with extra strength Advil. That's ibuprofen. Some people know it as Motrin. So that's number two is know what works best.

Then number three is know what doesn't work. What doesn't work for you?

Well,this travel gum definitely doesn't work for me. Taking gravel four times a day does not work for me because I overdosed. What doesn't work for you?

As you play around with that, as you figure it out, know what does, and doesn't work for you.

Number four is have a plan. Have a plan because it's possible that if you had a relapse, you're going to have another one. It may not be exactly the same, my case I've been having these vertigo relapses for 11 years. I know I have the lesion on the eye under my brain. I know I'm going to have another one.

It's very probable. Even if it was five years out, I need to have my little toolkit.
I need to be prepared. There have been, there was a time in the past year where I did have my relapse and I didn't have my emergency homeopathics. I regretted not pre-ordering it because by the time I received the remedy in the mail, which was a week and a half later, it was almost too late. I was already through the thick of it.

That was a really good learning for me to realize.

So what is that for you?

What do you need to have? What do you need to plan ahead for the possibility that you might have a relapse? Maybe you need to have steroids on hand. Maybe your doctor needs to prescribe you those and tell you to call him/her before you take them. Have them on hand because it's a necessity to be able to take them right away.

When you relapse, you want to be able to nip it in the butt in the best way you can, knowing what you know. That's number four is planning ahead.

Number five, number five is asking for support. Having support, whether it's even over the phone.

In the first couple of years that I was living with MS relapses, I was living by myself. I couldn't leave the house. So maybe I needed someone to bring in groceries. Maybe I just wanted to talk to someone on the phone because I felt isolated, lonely and could manage, but it was hard.

So find that support. Asked for that support. Plan that ahead of time. Who are your go-to people going to be? Do you have someone that you can count on that could pick up groceries for you or a prescription?

If not, what options do you have? Do you have an option to use a delivery service, to bring something to you?

Do you have people you can talk to on the phone? If you've got a spouse or partner what are they willing to do for for you?

Now you know the five strategies to dealing with a release.

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