Anyone suffering dizziness / blacking out / vertigo / swelling?

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Blue Velvyt
Regular Member

Date Joined Sep 2006
Total Posts : 194
   Posted 1/4/2008 7:33 PM (GMT -7)   
Real quick, is the search engine working? I keep trying to find certain keywords like "dizzy" but nothing come up, perhaps its never been used before :)
Over the summer I started blacking out for a month, I spent most that month in the er trying to convince them there was something really wrong, 2 hospitals (both kaiser), multiple doctors, and the best they could do was tell me I vertigo. I screamed about the crohns, I pretty much got the speech about wasting their time if I have a know disease being handled by a speacilist and that they only treat life threatening situations and mine didnt qualify.....Wow!
So since when is blacking out when you stand or walk not potentialy life threatening and how am I supposed to know it's not?
I saw my gi, got back on the all the meds, pentassa, entocert, zantac, karafate etc and I got better. Vertigo went away.
Anyway, I'm sick all the time, but some days arent as bad as others, and some months arent as bad as others, if that makes sense.
This is one of the months that suck, lost 10 pounds in two weeks, suffering lots of pain, but I know this pain so theres no panic this time.
The issue this month is blacking out again, started getting dizzy last week, blacked out today.
Its a quick blackout, enough for my world to go black, tunnel vision and the next thing I know I,m on the floor and it clears up, no real time laspses durring these vertigo situations, 3 or 4 seconds at most, although the vertigo remains a constant.
Is this happening to anyone else?
Swelling, anyone getting swollen mass's in their body that grow and reduce over time, they found them in my throat last year by acident when scanning my head, they took out a saliva gland, biopsied (negative for cancer).
The side of my face is constantly swollen and there is now another large area swelling under my left arm along my chest under the armpit, hurts like hell sometimes and others just feels swollen.
Is this happening to anyone else?
So there ya go, some more stuff that seems weird and I have no doubt will turn out to be quite common with crohns :)
Thanks in advance....
PS I stopped remicade this month and waiting another month to go humira, also been off the entrocert for 2 months, wonder if ether of these would get me back to ok

Post Edited (Blue Velvyt) : 1/4/2008 7:38:27 PM (GMT-7)

Aussie Sheila
New Member

Date Joined Jan 2008
Total Posts : 14
   Posted 1/4/2008 9:12 PM (GMT -7)   
Yes, I am suffering terribly from dizziness, you are not alone. My doctor tells me he doesnt know whats causing it. Apart from the dizziness I have pulsatile tinnitus in one ear which started after an endoscopy and the doctor had to us argon laser to treat bleeding ''ANGIODYSPLASIA ' in the duodenum, I woke up and have had this heartbeat in my ear since then.
I have googled dizziness and crohns and havent come up with much either.
It would be interesting to see if any other of us crohnies are having dizziness as well.

Veteran Member

Date Joined May 2003
Total Posts : 2481
   Posted 1/4/2008 10:14 PM (GMT -7)   
Have you been tested for vitamin b12 or iron deficiency? I have had vertigo and dizziness and fast strong heart beat due to both of this problems.

Blue Velvyt
Regular Member

Date Joined Sep 2006
Total Posts : 194
   Posted 1/4/2008 10:28 PM (GMT -7)   
Geesh Aussie, sorry to hear that, and let me add ouch and that sucks and feel your pain as well to that list

Roni, yes I am defecient in both but am taking vitamins and self injections to counter them, but only started the injections 2 months back and the vitamins are not raising my iron levels back up, oh and my vitamin D is defecient as well :)

That could well be it, or not, as last time I got like this over the summer they did not test for vitamin deficiencies, so in theory if they reverse my deficiencies and I got better then I would be very happy at knowing that it is controllable

Regular Member

Date Joined Dec 2006
Total Posts : 177
   Posted 1/5/2008 12:14 AM (GMT -7)   
What you are describing sounds a lot like orthostatic hypotention- that's when your blood pressure drops suddenly when you get up from sitting or laying down. Sometimes healthy people experience it like a "head rush" but when there's something wrong it can drop enough to make you black out. It can be caused by lots of things, most commonly side effects of medication. I had it when I was anemic and my iron counts were very low. For some reason it was always much worse when I had a fever. Some vitamin deficiencies might cause it too. It was kind of funny (to me) because I'd get up in the middle of the night to use the bathroom and about halfway across my bedroom my vision would narrow and I'd get dizzy and literally walk into a wall- the same wall every night! You'd think I'd learn to shift my balance the other way!

Mention it to your doctor and make sure it isn't anything serious. And if you can, try to get up slowly- I know that's not always possible when you're running to the bathroom!

New Member

Date Joined Nov 2005
Total Posts : 18
   Posted 1/5/2008 12:54 AM (GMT -7)   

Sorry to hear you aren't feeling good.  I know how those days are.  I have had blackouts for about 5 years, also get fuzzy eyes when my blodd pressure drops.  My specialist sent me to and heart doc and they gave me a tilt table test(strapped me to a table at a 45 degree angle for 26 minutes with all kind of monitors)  I blacked out after 20 minutes and woke up in a bad sweat.  Heart doc said I have neuro-cardiogentic synocope(sp?).  Which basically is a result of the scarring of my intestines, so I don't absorb all the nutrients I need to.  I am suppose to drink twice as much water of a normal person.  He also said that I have low blodd pressure.  I can tell when a blackout is coming on and when I feel it I eat something salty and that usually takes care of it.  I just switched from remicade to humria also about 9 months ago and it hasn't changed anything with my blackouts.  Humria is wonderful and there seems to have less side effects than remicade.

Hope you start feeling better!!

Blue Velvyt
Regular Member

Date Joined Sep 2006
Total Posts : 194
   Posted 1/5/2008 1:19 AM (GMT -7)   
hrm might be on to something here, at least its worth discussing with my Doctor...
My chest / ribs hurt and have for 3 years, anyway they did the test where I ran on inclined tredmill hooked up to all the wires to test my heart

I was sitting when they hooked me up, when I stood ( and had a abrupt feeling of tiredness) the nurse gasped audibly, I asked what what was wrong and she said my bloodpressure dropped suddenly, but then it came right back, I labored through the test, but they said it was within normal ranges

Thanks for the tip on the blood pressure, gonna hit the doc with that as well when I see the end of the month....I might as well be trying to set up an appointment with the President, certainly seems like his time in in demand, my doctor that is, possibly more then the President's time is desired :)

Veteran Member

Date Joined Mar 2005
Total Posts : 2486
   Posted 1/5/2008 1:25 AM (GMT -7)   
Sounds like orthostatic hypotension. You sit, you're good. Suddenly you stand, BP shoots way down. It happens for a lot of reasons but could be causing your dizziness and black outs. Very necessary to mention this at the next doctor's visit. In the meantime, you know the drill - tons of fluids to keep the blood pressure stable!
Co-moderator - IBS Forum

Regular Member

Date Joined Jul 2007
Total Posts : 456
   Posted 1/5/2008 7:13 AM (GMT -7)   

I have this probelm, too.  In fact, the boss walked into the supply closet yesterday and found me hanging onto one of the shelves, just staring at it, not moving.  I was having a dizzy spell, and I've learned that if I put a hand on something stable, stare at something without moving my head or eyes, and breath slowly that I can usually recover without going down.  Which in this situation would have been bad because there is no place to fall in the Supply Closet From Hell.  I'd have cracked my head on something and/or knocked stuff down on top of me.

It also happens if I've been sitting in one position for a long time and then take a deep breath and stretch.  At least I'm sitting when that happens.  But it's not pleasant.

Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 1/6/2008 4:30 AM (GMT -7)   
I get a lot of dizziness and 'near faints', where my vision seems to close up i see colours and feel like a weight is trying to pull me to the floor. I have low blood pressure usually between 80/50 and 90/60 but whenever I've spoken to a doc about it they say its not a problem and that in the UK they're only concerned with high blood pressure and that low blood pressure is seen as a good thing....yeh a really good thing last year I fainted and smashed my head on a wall on the way down which left me with a big bleeding lump and concussion!! I ended up having a little argument with my doctor as I did feel it was something that should be taken seriously, I'm a small female what would happen if I wound up unconscious out clubbing or walking home or if I fainted in a road or hit my head so hard I got brain damaged!? I don't think they appreciate how scary dizziness etc can be when you suffer from it! Apparently in Germany low blood pressure is considered a disease and they have medications for it but just not here....
20 yr old female. Diagnosed with Crohn's Disease 2002
Crohn's arthritis in fingers, wrists, jaw and sacroiliitis
4 1/2 years remission with methotrexate and occasional infliximab!

Blue Velvyt
Regular Member

Date Joined Sep 2006
Total Posts : 194
   Posted 1/6/2008 5:33 AM (GMT -7)   
How scared was I the first month of black outs?

I'll tell ya, I started making a list of the things I needed to get done and the people I needed to talk to.... on the off chance the next time I hit the ground I didnt get up.....

I'm a guy, I have broken bones, I have crashed cars, I have lived through building fires, earthquakes and had my share of emotional traumas.....

I'm betting I could throw a rock blindfolded in a ghost town and hit somone who could say similar things.....

Point being, I was terrified everytime the world began to vanish in front of my eyes, all I could think about was my wife finding me that way...

Now, of course I have a different perspective, it's just another symptom and even that scary 2 months last summer taught me another valuable lesson....

Try not to panic :P

Regular Member

Date Joined Dec 2007
Total Posts : 102
   Posted 1/6/2008 2:23 PM (GMT -7)   

I started getting dizzy and hearing wooshing sounds in my right ear two years ago.  I didn't connect it to the gastro troubles  I was having at the time.  I was working around allot of paper dust so I thought I must have allergies or something.  I wasn't on any meds at all at the time. I don't work there anymore but I still get get it sometimes.  As the gastro symptoms kept getting worse I have finally benn diagnosed with crohn's as of last week.  Only on anti-depressant right now till I get my treatment plan.  I believe it is all connected some how.  Crohn's is considered a systemic disease that affects your entire system.  I like this wikipedia link best because it tells about not all, but most of what can go wrong with you because of crohn's. I also feel week and tired, I always feel like I'm coming down with something but I'm not.  I think most websites only mention the classic and most obvious symptoms that they find in a textbook some where. 

Here's the link:

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 1/6/2008 3:22 PM (GMT -7)   
Not more than a month ago I was on potty thing I knew I was in tub had smacked head and did not have a clue how I got there..........

My bp drops if I get up too fast and yes I too get dizzy fel totally off balance as well

Hoping you find out your answers

Take care
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        Moderator for Alzheimers,Anxiety/Panic and co Moderator for Crohns

Regular Member

Date Joined Jun 2006
Total Posts : 267
   Posted 1/8/2008 10:11 AM (GMT -7)   
Are you anemic? How does your bloodwork look? I was suffering from dizzy spells from anemia until PCP put me on aggressive high dose iron supplement and haven't had a problem since.
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)

New Member

Date Joined Jan 2008
Total Posts : 2
   Posted 1/9/2008 12:56 AM (GMT -7)   
Dear Blue Velvyt,
I have this same experience after long-term steroid use...and it doesn't seem to matter whether it's Prednisone, Medrol, or Entocort. For me it was caused by a sudden drop in adrenal gland function from dropping steroids too fast, as well as the steroids interfering with sugar absorption. I get steroid induced hypoglycemia and have found that cutting out all sugar/white foods and increasing protein has helped alot. I would recommend seeing a Endocrinologist, not GI or primary Dr. for this problem, they run more specialized blood tests. Hope this helps.
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