Scary experience

[Raingrrl]

This is a long one...but a cautionary story for anyone heat sensitive like me. 😳

Wednesday I got up at the crack of dawn to pick up a friend and take her to her appointment for surgery at a local hospital. I hate getting up that early but her ride had cancelled.

We got to the hospital around 6:00am and my friend checked in. Then we went up to the surgical floor to check in there too. My friend was talking to the receptionist when I was overcome with vertigo. I turned around so my back was to the reception desk and held on to the lower part while trying to figure out what was happening. I’m always scared of falling because I’ve had some spectacular falls. I’ve had that level of vertigo as part of an exacerbation before but that was when I’ve been sick with a fever. I wasn’t sick on Wednesday. Someone asked if I was ok and I said no...I’m super dizzy and the room is spinning. I also said I have MS and wasn’t sure what was causing this

Next thing I know, there were 2 nurses there with a gurney. They asked if I could get on it but I was so dizzy I was afraid of letting go of the desk. Somehow I got up on the gurney without falling. While doing that 8 or 9 other medical people showed up including an ER doctor. They were all staring at me intently which didn’t help. All of a sudden, one of the nurses said, “I’ll bet she is overheated”. It was a cool, very rainy day so I had on a long sleeved T shirt under a sweatshirt with a wind breaker on top. The nurse stripped off the windbreaker and sweatshirt and I immediately felt cool and the clammy sensation I had had with the dizziness started to quickly go away.

I told the nurse I was feeling better and that she must be right...that I got overheated. You would think with 20 years of dealing with the MS beast under my belt, I could have figured this out. It was weird that the vertigo and clamminess came on so suddenly.

The ER doctor asked if I wanted to be checked out in the ER. I said no because I was afraid of the expense. I’ve since been told that I should have done that. But..I didn’t. The medical people started to go back to where they came. The two nurses that came first made sure I got off the gurney ok and was seated in the waiting area before they left. The receptionist brought me some ice water which cooled me off more and I was feeling back to normal. She told me not to leave until checked out by a nurse. I sat there for about an hour when the nurse showed back up. And that’s when I found out they had called a code blue on me! Hence why all those medical people showed up. I hate that I caused so much drama.

I saw the nurse practitioner at my primary care’s office yesterday. They did an EKG after lecturing me about why I should have let the ER check me out. They took blood and a urine sample. So far all has been normal. They asked me to check in with my neuro. She doesn’t have a single appointment open the rest of the month! I talked to her nurse and she will talk to the neuro and call me back.

I have been feeling excess fatigue since it happened and sleeping a lot. Not sure what that’s about. It’s also weird that I didn’t feel hot prior to the dizziness coming on. I wore a similar tshirt and the same sweatshirt the day before and felt cold. It’s kind of a mystery what exactly happened. I am uncomfortable not knowing for sure what caused this. I’m about 7 weeks away from my next Ocrevus Infusion.

[kdali]

So sorry that happened to you! They have to call for help in that situation, it’s not about you or them being dramatic. Thank goodness it happened when and where it did. You could have been driving her there and hurt both of you. You could have been driving home after dropping her off and crashed. I’m glad everything is checking out ok so far!

[jimeka]

What an experience, one you probably never want to happen again. Pleased that everything turned out ok. Thanks for sharing as now that coat season is here anyone of us could get into a similar situation, so it’s good to know about being over heated. Thank you, blessings Jimeka 🤗

[hotwireshoney]

So glad your ok. I had the same experience several times. I was in a meeting with a hundred and ten people when it happened to me the first time. That's how I actually found out I had MS in 2004. What I had what's called nystagmus which is where people could actually see my eyes jiggling in my head back and forth. Heat sensitivity is a major cause of it as well as stress and other factors. My doctor explained to me that the fatigue and exhaustion that you feel is the same as having a seizure. He also explained to me that some people with Ms will never experience that. It was very scary to me. I have had my optic nerve checked and so far everything is good. My prescription for my glasses has gotten worse but at least I still have my vision. Do some research on it and just be aware you can actually feel it coming on. The symptoms are like someone spinning you on a Merry-Go-Round extremely fast and then standing you on the ground as you're trying to keep your balance . I have found that if I close my eyes at least it doesn't make me nauseous to where I actually get sick. God bless you and keep the faith

[Raingrrl in reply to hotwireshoney]

Hi hotwireshoney ...

Nystagmus actually is one of my most annoying symptoms so I’m quite familiar with my version of it. It’s a daily symptom and not related to getting overheated in my case. Generally I feel the overheating coming on and can mitigate it. In this instance the vertigo came on suddenly and I was unaware I was overheated. I haven’t had an instance of vertigo like this in a few years. The last time was when I was sick with a fever.

Once the nurse removed my windbreaker and the sweatshirt I had in over my T-shirt, my temp started to drop and the vertigo went away.

[erash]

Thank you for relaying your story. Scary and glad you are doing somewhat better. It’s a good reminder to all of us that we need to take care of ourselves while we are compassionate to others.

I wonder if it was a perfect storm? Heat, stress, changed routine (early AM).

Do you experience the “crap gap”? A wearing off of the Ocrevus as you near your next infusion.

I think I did before my last infusion and I’m going to ask my neuro if we can do infusions every 5 mos rather than every 6 mos.

[Raingrrl in reply to erash]

Hi erash !

I too was thinking it might have been the perfect storm. I’ve had a lot of stress the past couple of weeks that affected my sleep.

I’ve also been wondering if I’m experiencing some issues due to a wearing off of Ocrevus. Ive been excessively fatigued lately but it could be because of all the stress and lack of so,I’d sleep. But I’ve felt this prior to other Ocrevus infusions and had the same experience with a Tysabri.

[twooldcrows]

so sorry for what happened to you and i hope they can figure it out ...

[Juleigh21]

I’m so sorry this happened to you! I think erash is onto something with the perfect storm theory. I’ve had the first half doses of ocrevus and I’m wondering if I’ll suffer the “crap gap.” I always did with tysabri.

[Raingrrl in reply to Juleigh21]

I had this with a Tysabri too. I was wondering if the wearing off of Ocrevus is causing excess fatigue. I’ve experienced it a few weeks prior to each infusion. I’m due for #5 in December.

[CloverPrincess]

That’s so awful! I’m sorry this occurred. I believe that your infusion will make you feel better at the least!

[Juliew19673]

Wow, that is my worst thought as well. At least you were in a hospital? I blame hormonal change when that happens, but will now throw in getting over heated into the mix - your all better now?

[Raingrrl in reply to Juliew19673]

I was much better after the nurse removed the windbreaker and sweatshirt I had on over my tshirt. My temp started dropping immediately and the vertigo went away. One weird thing was I had felt clammy while the vertigo was going on but not sweaty. The nurse told me later that I had been sweating. I didn’t know...so strange.

[bxrmom]

Sorry this happened to you. You were in the right place for it to happen. Glad you are ok and know what the cause was. Scary times.

[Texandyroe]

Wow! I’m so sorry this happened, but glad you were in the right place for it to happen. And kudos to the nurse for recognizing it as overheating. Thanks for the post...good lesson for us all.

[ahrogers]

What a day!

I too have episodes of vertigo for the past couple years. They used to come and go for a couple weeks and then none for months but had it for a month straight in May and now have the spacey headed feeling without the spinning most of the time.

I get two different kinds of dizziness. The better of the two is when it feels like I am spinning, like when you were a kid and spun around in circles to make yourself dizzy. This typically happens when I turn my head or change positions. That was the kind I was mainly having in May. The worst is when the world spins around me. My eyes move all around too (probably trying to compensate for the spinning). This vertigo hits suddenly in all sorts of situations, sometimes even while I am sleeping. I am usually nauseous for a few hours after also.

My neurologist does not seemed concerned about it. She gave me Gabapentin three times a day but I mostly just take at bedtime and sometimes in the morning. It does seem to happen less now that I am taking it.

Don't let your PCP office make you feel bad about not going to the ER. If we went to the ER for all of our symptoms we would live there 😃

I hope your neurologist gets back to you soon and has a solution for the vertigo. Mine had also told me if it wasn't related to the MS Dramamine can help. I had already tried it and knew it didn't help me.

Good luck 🙏🙏

[Raingrrl in reply to ahrogers]

Interesting about your gabapentin prescription helping with vertigo. I’ve taken gabapentin for years to help minimize the neuropathy in my legs and feet. The vertigo I had felt like the spinning kind I had in college after too much partying when I may, or may not, have had one too many tequila sunrises. 😆

[pamgarner]

so sorry for bad experience,when you get to neuro have them do blood work and they can check to see if you have any orcrevus in your system,if you don't the insurance will let you have it earlier,but you know insurance,you got to prove it to them.I know mine wears off at 5 months best of luck to you

[janetb1968]

Glad ur ok now honey xxxx that was a very scary situation for u and it was heat xxxxx god how scary xxxxx ❤️

[kycmary]

Wow sounds like you were dressed for being outside. Should have removed your windbreaker while inside. Sometimes its hard to figure out how to dress.

[Raingrrl in reply to kycmary]

Hi kycmary ! I always dress in layers because here in the PNW, the weather can change quickly so I need to be able to adjust what I have on. It’s not unusual for me to have on a tshirt and sweatshirt even indoors at this time of year. The only addition to this on that day was the thin windbreaker. It was a rainy cool day so that’s why I was dressed the way I was.

When I went into the hospital, I didn’t feel over heated so I left everything on. I was taken by surprise because apparently I got overheated without the usual warning.

Ever since I lost some weight a couple of years ago, it’s also easy for me to get too cold and then my muscles get spastic. Makes challenging to figure out what to wear some days.

[Raingrrl]

Update: Had my followup with the NP at my primary care’s office this morning. They didn’t find anything of concern in my bloodwork or the rest of the exam both this week and last week. So no explanation in all that for what happened. That’s a good thing.

My neuro has moved up my MRI because of this episode so I’m waiting to get scheduled for that.

[kycmary]

Sure am glad you came out alright, I have to dress in layers too & this weather is very difficult to know how to dress over an hour or two let alone the whole day!!

[Raingrrl in reply to kycmary]

Very true

[Peruzzot]

Glad you're doing better.

I hate the vertigo. I've been having issues with it being really bad last week. This week as well just not as bad. Neurologist has me set up with mri's next week. We'll see how it goes.