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I keep feeling like I'm going to pass out

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Sara14
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Joined : Mar 2007
Posts : 7792
Posted 2/13/2020 2:49 PM (GMT -8)
So, last night while I was sitting on the couch watching TV with my cat, I suddenly felt like I was going to pass out. I then went to lie down on the couch for a few hours because I was really scared. It was like continual feeling of being about to pass out, over and over. It felt better if I lied down and didn't move at all. It was a lot better after a few hours of lying down, but I still felt lightheaded if I got up and walked around. It was mostly better after sleeping, but I still felt a little lightheaded today. Then, about an hour ago, I walked upstairs and then was dancing along to a funny scene from The Office and after a few seconds of dancing, I again felt like I was going to pass out. I had to sit down.

What is going on with me now?! I told my GI, because I am half wondering if my recent weird health stuff (the migraine a month ago and now this) is due to the Humira, and he said he doesn't think it is from the Humira. He told me to see my family doctor and to take my blood pressure if it happened again. I need to buy a blood pressure cuff,. My blood pressure was normal when last checked at my Feb. 3 appointment and has always been normal. It used to be on the low side of normal, but no one was ever concerned.

My UC is fine. I feel pretty much normal in that regard. I'm eating enough and well-hydrated. My meds are up-to-date in my signature.

Any thoughts?
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ks1905
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Joined : Sep 2005
Posts : 6394
Posted 2/13/2020 4:45 PM (GMT -8)
Do you have any sinus,
ear, or teeth issues going on?

If you think that you’re having a reaction to the Humira then you could try some Benadryl but I’d be careful with that if you’re having a dehydration issue.

Are you having any withdrawal issues from medications? I stopped drinking for a month and I got the worst headaches and light headedness for the first week.
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Sara14
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Posts : 7792
Posted 2/13/2020 5:40 PM (GMT -8)
Hi Keith. Thanks for the reply. No ENT issues and I'm not dehydrated. I was taking Benadryl earlier this week to help me sleep (just one at bedtime), but didn't take one last night after this started. Maybe it does have nothing to do with the Humira.

I don't drink these days and haven't recently stopped or started any meds. Good ideas though... Back in November, my iron was on the low side of normal. I didn't have anemia though. I started taking a multi with iron back then, but GI said not to take iron pills at that time since they can be hard on the gut.

I guess I'll call my family doctor tomorrow. Maybe they can at least order bloodwork and rule some things out.
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quincy
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Joined : May 2003
Posts : 33571
Posted 2/13/2020 6:34 PM (GMT -8)
It's possible sudden drop in blood pressure or blood sugar...or...vestibular or visual/vestibular connection.

Visually....was there zooming in and out or weird music? And when you were dancing around, fast eye movement can screw with your brain/balance perception when moving.
I have BPPV and your symptoms could be perceived as familiar as what I've experienced at times.

Regarding iron...could be as well. Have B12 and iron checked. I use Ferrous Gluconate....no issues ever gut-wise. Stool is slightly darker when I take it.

Do see your doctor and have a proper work-up. Let us know how you're doing.

q
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ambling
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Posted 2/13/2020 6:47 PM (GMT -8)
As well as all the above...particularly blood pressure/dehydration.... also remember to breath lol. Deep slow breaths....
Hope it settles.
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Sara14
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Posted 2/13/2020 7:09 PM (GMT -8)
I was just dancing in place a little for literally like 3 seconds to a song in a TV show. It wasn't much movement at all, but yeah, it definitely did something. But last night when this all started, I was sitting down on the couch, not moving at all. Well, I think I was petting my cat, lol. And I had just finished eating a burrito.

I was under a ton of stress yesterday and the night before (ex was contacting me), but when it first started, I had stepped away from my computer and phone and was not feeling stressed. I've had a lot of stress in my life and never experienced anything like this, so I doubt that was the cause, but just grasping at straws here.

No weird visual stuff or sounds. What's BPPV?

Thank you both! Will let you know if/when I find anything out.
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Sara14
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Posted 2/13/2020 8:07 PM (GMT -8)
Well, now my vision does seem kind of weird. And I felt nauseous for a bit. When I got the migraine, I was on my period and I'm on my period again now. I'm just wondering if maybe there is some connection.
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suchatravesty
Regular Member
Joined : Dec 2017
Posts : 347
Posted 2/13/2020 9:38 PM (GMT -8)
Sara, I get migraines associated with my period. I'm on the pill, and the migraine usually shows up on Tuesday or Wednesday of the sugar pill week. It started in my 20s and would happen every month, but now in my 30s, I get them maybe only 3-4 times a year. It is caused by a change in hormone levels. One thing you can do is keep a journal of when this happens -- what were you doing? any med changes? dehydration? did you do a lot of exercise that day or the day before? period status? -- this is how I figured out they were related to my period. For a long while, I would put a low-dose estrogen patch on during the sugar pill week and stopped getting them.


and yeah, I get weird vision and nausea when this happens.
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Sara14
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Posted 2/14/2020 12:49 AM (GMT -8)
Thank you. I don't have any pain right now though (which I'm grateful for, lol!). I did have a headache yesterday before this hall started but I took some pain medicine and it went away. I feel okay right now after sleeping a while. We'll see what happens tomorrow. Going back to bed. Oh, and sorry to hear you get migraines!
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ewafromwarsaw
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Posts : 1423
Posted 2/14/2020 3:39 AM (GMT -8)
when i was suffering from an extreme fatigue, the only thing that helped me enormously was fish oil
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Sara14
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Posts : 7792
Posted 2/14/2020 6:56 AM (GMT -8)
I feel better so far after sleeping. I guess I'll see if it comes back again later today. Thanks everyone.
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Sara14
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Posted 2/14/2020 7:55 AM (GMT -8)
And now the feeling is coming back. So it gets better after I sleep, so I wouldn't think it would be a blood sugar issue.
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ks1905
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Posts : 6394
Posted 2/14/2020 8:46 AM (GMT -8)
I'd go to the doctors' office because this seems to be continuing and may be getting worse. Is it a reaction to a medication?

I would make a list for the doctor:
1) current medications (previous meds too)
2) symptoms
3) times and events when this happened.
4) list of questions and things to discuss. BP, blood sugar, dehydration, infections, low vitamin and mineral levels, and etc...
5) available tests and what you'd like done.

This is kind of what I do when I am in a medical situation like when I needed surgery, hospitalizations or was having serum sickness to anti-tnf meds. It helped me deal with the situation and also showed the doctor that I was taking this as serious as I could, this way they can not easily just dismiss things as lets wait and see. Make them explain everything that you are concerned about.

I take it one step further and print out a copy of my sheet and give it to my doctor so we both go over it together. I take notes right on the printed list of questions.
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Sara14
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Posted 2/14/2020 10:22 AM (GMT -8)
Thank you, Keith! I'll do that. The soonest appointment I could make was next week Thursday morning. I might go to an urgent care walk-in place. I bought a blood pressure monitor and can't figure out how to work it. sad I read the directions and everything. I should have paid more for a digital one.

I started wondering if it could be carbon monoxide poisoning because the pilot light on my little propane fireplace went out a week or two ago and I can't get it re-lit. Turned the gas off to it late last night just in case. My CO2 detector hasn't gone off though and I was told by the gas company that those fireplaces don't leak even when the pilot light goes out, so I doubt it is that.
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ks1905
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Posted 2/14/2020 11:57 AM (GMT -8)
They sell o2 blood sensors too. The CO2 could definitely be an issue.

I bought a wifi enabled BP monitor, it connects right to my iPhone and graphs it for me (I have high blood pressure). It's pretty easy to use. Maybe watch a video or two about your bp monitor on Youtube.
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Sara14
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Joined : Mar 2007
Posts : 7792
Posted 2/14/2020 12:13 PM (GMT -8)
I figured out the blood pressure cuff. My dad texted me how to do it, haha. So, it's actually not low. It's actually slightly high for me! 140/75. Wow, a wifi-enabled BP monitor sounds very high-tech!

Maybe I'll look for the O2 sensor, or at least ask the doctor about that. Thanks again! The only thing that changed recently is increasing my Humira to weekly.
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Sara14
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Posted 2/15/2020 9:47 AM (GMT -8)
My doctor's office told me to go to the ER so I did. They found nothing wrong. Really frustrating. I bet I'll owe a ton of money for this too. sad All they found was very slightly low potassium but she said it was nothing she was worried about. They are giving me potassium pills to take before I leave.
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quincy
Elite Member
Joined : May 2003
Posts : 33571
Posted 2/15/2020 9:56 AM (GMT -8)
Wow...hope this gets resolved. Good you got a bp cuff and then got checked out at the ER. Hope your doc does further testing on Thursday.

BPPV is this...
https://www.dizziness-and-balance.com/disorders/bppv/bppv.html
I've had it since age 11, but it was more the visual and positional head symptoms that I get reminded me of what you experienced...not a full out attack.

q
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Sara14
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Posts : 7792
Posted 2/15/2020 11:56 AM (GMT -8)
Interesting, thanks. That doesn't really sound like what I have though. This started while not moving at all, just sitting on the couch. I know it happened once with the dancing though.

The ER nurse told me I had a UTI, but the doctor didn't mention it at all so I asked her and she said I didn't have one. Then the nurse came back in and again said i had bacteria in my urinalysis but because I didn't mention UTI symptoms they would have to culture it and if it's positive I'll get a call within 48-72 hours. But yeah, I've had a couple UTIs before and they hurt. I really don't think a UTI is causing my almost-constant low-level lightheadedness and intermittent feelings like I'm about to pass out.

They did bloodwork and an EKG. Hemoglobin was fine. Blood pressure was just slightly high for me, but I am on Uceris and haven't been exercising...128/82. At least I know my heart's fine, and I'm not about to die. Lol.

So if this is a medication side effect, would that be likely to show up in bloodwork or no?

BTW, potassium pills are HUGE horse pills. Thought I was gonna choke on those!

ER staff was great though, so at least it was as pleasant an experience as one can have in the ER.
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countess18
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Joined : May 2016
Posts : 466
Posted 2/15/2020 12:18 PM (GMT -8)
I had side effects to Humira that were unique. I had symptoms where I thought I was having a stroke ie. Dizziness and out of body type experiences. I also had bad anxiety on the drug that was insane. Don’t let the doc assume it’s not from the meds. My doc believed me and said people ha e reported a variety of symptoms. It is odd that You Never had them on humira before but maybe the increased dose???
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Sara14
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Posted 2/15/2020 12:34 PM (GMT -8)
Thank you for saying that. Since the only thing that has changed is my Humira dose, it makes sense to me to be the cause. Thursday night, in addition to the feeling lightheaded/dizzy, I also felt extremely out of it, like I was on drugs or something. This all started on a Wednesday night though and I've been doing my injections on Thursday afternoons. I don't know if that matters. Anyway, I'm guessing Humira isn't going to work so I'll probably be off it soon. And if this continues, I may stop it even sooner! I got dizzy after my very first Remicade infusion, but it didn't last more than a couple hours and I never felt like I was about to pass out. The ER doc almost didn't seem to know what I was talking about, so I feel like maybe this feeling like I'm about to pass out and stopping myself thing isn't very common. I've never had that before now either, so I know it sounds kind of crazy. Anyway, I'm glad your doctor believed you and thank you for sharing that.
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Sara14
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Posts : 7792
Posted 2/15/2020 12:36 PM (GMT -8)
countess -- Did yours start right after you started on Humira? What are you on now? Did it happen with any other biologics?
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countess18
Regular Member
Joined : May 2016
Posts : 466
Posted 2/15/2020 5:40 PM (GMT -8)
The bad anxiety kicked in about 3 months in and the weird dizzy episodes around about 6 to 7 months in. I am on Remicade now and do not have any side effects.
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ks1905
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Posts : 6394
Posted 2/15/2020 6:28 PM (GMT -8)
I hated Humira. I don’t talk about the side effects that I had from Humira too much because I don’t want to scare people from taking Humira but I had neurological issues from Humira while I was on it — I was tripping, dropping things and couldn’t think straight. I thought that I had MS. My GI said it was serum sickness and that it would go away after I stopped Humira, and it did go away.

I also had dry mouth and lots of itching while on Humira.

In fairness I had serum sickness from the other anti-tnfs that I was on (Remicade, Cimzia and Simponi) but it wasn’t nearly as bad as Humira.
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Sara14
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Joined : Mar 2007
Posts : 7792
Posted 2/16/2020 6:49 AM (GMT -8)
I called the ER this morning because my online portal said my urine culture was complete, but didn't tell me the result. I guess it isn't complete, but the woman I spoke to gave me some of my actual results (the doctor just told me everything was fine and the nurse just told me I had bacteria in my urine that looked like a UTI, but they didn't give me any antibiotics). My urine test was a +2 (she told me +4 is a severe UTI but +2 is definitely a UTI so why wasn't I given antibiotics?). She also told me my WBC was elevated (13.4), which she said definitely signals an infection. I guess that could also be my UC, but it's pretty much under control on the Uceris right now. I woke up with UTI-like pain 2ish weeks ago but then drank a ton of water and the pain never came back. I definitely want antibiotics if I have an infection and am on Humira though! Anyway, she said the culture will tell us what type of antibiotics to use and when that comes back, the case manager will decide whether to put me on antibiotics. Regardless, I don't think almost passing out and lightheadedness that lasts all day would be from a UTI, but I still want that treated if I have an infection that's been lingering for weeks.

Keith -- That sounds horrible. Sorry you had to go through that.

Countess -- OK, that makes me feel a bit better in the fact that this didn't start right when i started Humira.

The lightheadedness was not nearly as bad yesterday and Friday as it was Wednesday and Thursday, and today I haven't had it yet. I've only been awake 45 minutes though. Lol.

Thanks for listening!!
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