HealingWell
Search Close Search
☰

maybe you guys can help me out

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/3/2013 7:16 PM (GMT 0)
I am having a brain MRI next Wednesday due to some annoying symptoms.

1. Neuropathy in feet ankles, hands, and lips

2. Constant dizziness/motion sickness

3. Heat intolerance (I carry an ice pack with me/use an ice pack when sitting on the couch)

4. Ocular migraines

I can't exactly pinpoint when these all started, but they've gotten worse this year- mainly this past month. The dizziness is the hardest thing to deal with. Even when I'm sitting, I feel like my head is a snow globe being shaken. I went to the ER on Sunday- they did blood work and a ct scan on my brain. Everything was normal. They looked at CBC, CMP, electrolytes, thyroid, iron, b-12, and a bunch of other things. Nothing is standing out as being the problem.

The only steady medications I've been on this year are flagyl, vancomycin, b-12 injections, and iron infusions. I tried humira and IVIG with no success. I have suspected that it's the vanco since I've been on that the most, but I stopped it on Monday since the ER doc said it could be the vancomycin- especially causing the neuropathy. My gastro says the vanco can't cause these symptoms. Can recurrant c. diff infections cause this? I've had c diff since January but my last two stool tests the past few weeks have been negative.

I'm just not sure what to do. My GI wants me to start Imuran but I've read that dizziness can be a side effect. I just can't even risk my dizziness getting worse. It's already so debilitating.

I have been suspecting Multiple Sclerosis based on my symptoms and honestly would just feel better knowing exactly what it is, even if it's something I don't want to hear. That way, I can treat whatever is causing it.

If anyone has any thoughts- I'd really appreciate it. I'm seriously open to anything you have to say.

Posted 7/3/2013 7:27 PM (GMT 0)
I'm glad you're getting the MRI and I am sending you a TON of positive energy for a good outcome.

I wish I had more to offer, but I don't. My only other thought, and it has probably already occurred to you, is that if if it MS, you might be able to kill two birds with one stone using LDN? Also, don't you have a problem with anemia? Have you asked your PCP whether any of this could be caused by anemia?

In any event, here are some big {{{{{HUGS}}}}} and lots of +++POSITIVE+++ ~~~~ENERGY~~~~

xxoo
Posted 7/3/2013 7:36 PM (GMT 0)
janey, yeah, I would try LDN again. do neurologists typically prescribe it? I can't get it from any gastros around me so I ended up getting it online and making it. didn't help my UC at all though.

I figured it could be from the anemia, but i'm not technically anemic anymore- iron levels are fine. I haven't needed iron infusions since may and I've been taking oral iron instead. Im just so confused and frustrated with it.

thanks for your support!
Posted 7/3/2013 7:46 PM (GMT 0)
I think you're fine - it's the rest of the world that is dizzy -

it's all in your perspective :-)
Posted 7/3/2013 8:13 PM (GMT 0)
bananagirl, I have have been very dizzy all the time since Feb of this year as well. I guess it is more of a lightheadness than anything else. I have been to various doctors and everything comes back normal.

A couple of the doctors suspect stress/anxiety, which I disagreed with since it was constant, 24 hours a day even when I did not feel stressed. Although I am beginning to think they were right and have been trying to control my stress lately as this has been a very stressful time of my life.

I've done a lot of research on dizzyness and it could be a lot of things though. My next step is to go see a cardio doctor to make sure there is not anything wrong with the heart.
Posted 7/3/2013 9:18 PM (GMT 0)
Hi Joanna, I've heard a similar case on the Polish forum, a person who experienced almost identical symptons said that it all looked very dangerous, but finally it turned out to be some vitamin B12 "fluctuations" (I don't think it's the right word). She had been taking B12 infusions, and I've just noticed you are also doing it, but sometimes its level got higher or lower and this turned out to be the cause of her dizziness (she once fainted in her office) and neuropathy. I'm sure in your case it will also be something very minor!
Posted 7/3/2013 10:25 PM (GMT 0)
I wonder if it has anything to do with the IVIG you had a couple of months ago. By the way, I just read recently that IVIG has been linked to an increased blood clot risk, causing immediate and severe life threatening events.
Posted 7/3/2013 11:36 PM (GMT 0)
soystud, wanna trade brains?

jax, yeah, I get lightheadedness as well. have you heard of bpv- benign positional vertigo? that describes my problem. I watched youtube videos on the epley maneuver. I tried it today and it helped.

ewakedals, interesting about the b-12. I've actually never had low b-12 levels but my gastro wanted me to get injections just to prevent it happening during flares. my levels have been 500-1000 over the normal range since I started them. I don't plan on taking them again just to see if that could be related. I get what I call "b-12 headaches" because each time I get a shot, my head is throbbing for a good three days. I had one a little over a week ago but the headache lasted an entire week this time.

gary, it could be the IVIG. I definitely think that treatment set me back a lot in terms of recovery. I am very leery of IVIG now since I coded during the procedure so I definitely agree that it can be deadly.
Posted 7/3/2013 11:55 PM (GMT 0)
I have heard about BPV and tried eply manuevers but unfortunately they did not help me. My lightheadness has been gradually getting better over the past month or two. The problem with trying to figure out why you are dizzy is that it seems like dizziness is a symptom of almost every disease or medical issue out there.
Posted 7/4/2013 3:50 AM (GMT 0)
in a heart beat - it would be nice to actually have one again :-0
Posted 7/4/2013 7:15 PM (GMT 0)
I had been having this dizziness to the point I felt like I would pass out. I went to a Neuro. They had me do this new testing that is only done in a few places in the U.S. right now. They found out that I had neurally-mediated syncope. Basically it is a problem with the autonomic nervous system that you body does not send enough blood to your brain. There are other ways to diagnosis it besides the way I was dx. But I did have some other symptoms too. The littlest exertion made me exhausted. I was having headaches. But this problem can effect each person differently. I would suppose that a person could have just one symptom.

The treatments for it are really simple. The treatment I am following is taking a medication called Midodrine and I have to drink a quart of gatorade a day. Yes I know it sounds like a scam but it is a real AMA a recognized medical problem and treatment. I only mention it because you say you want to hear any and all suggestions.
Posted 7/4/2013 9:00 PM (GMT 0)

Teddtlove said...
The treatments for it are really simple. The treatment I am following is taking a medication called Midodrine and I have to drink a quart of gatorade a day. Yes I know it sounds like a scam but it is a real AMA a recognized medical problem and treatment. I only mention it because you say you want to hear any and all suggestions.

I looked up Midodrine and it is indicated for people with low blood pressure. Did you have low blood pressure when you were checked out? The reason I ask is that I have wondered if blood pressure was the cause of my dizziness but it is always normal when the doctor checks it.
Posted 7/5/2013 1:16 AM (GMT 0)
Hi Joanna, I was upset when I read your post that you coded during a procedure. I am so glad you are OK! I have not been online too much lately so I must have missed your earlier posts!

As for your dizziness, my first thought is medication induced. I would weed out one by one until and if you find out if one  is the culprit. If that is not the problem, the areas I would look to next would be blood pressure issues. Do you find you get dizzy when you stand and does it get better when you sit or lay flat? What about your blood sugar? Have they checked your blood sugar during these episodes? Next I would get a full cardiac work up.  Did they rule out vertigo?

Sending you prayers and hugs!! Please let us know how you are!

 

Posted 7/5/2013 3:09 AM (GMT 0)
Hey Banana

I'll bet $10,000,000 that it's an effect from a long term course of Flagyl and Vanco for sure. When I was first diagnosed I went through long term antibiotic therapy. It caused nerve damage in my hands and feet that lasted for a very, very long time. It's sounds funny but I couldn't wear socks for the longest time unless they were super soft like fine dress socks, anything else and my feet would react or well - its hard to explain.

I also had headaches and just didn't feel like myself for very, very long time after. Ton's of basic SCD legal probiotics and Kifer Milk helped quite a bit since then.

And not that it matters but since then - my body became super sensitive to temperature. I used to live outdoors winter and summer all day and night... but not so much now.

Nerve damage, personality changes, temperature sensitivity, head aches are all side effects from antibiotics...

I'd be willing to bet that once you're away from them for a while things will calm down. And any anitbiotic can cause this if taken for long enough and/or at high dose. Vanco is probably the bad guy as you point out... Flagyl and Cipro is what go me...

PS - It sucks to say, but I still never recovered 100% from the nerve/temperature thing...
Posted 7/5/2013 3:50 AM (GMT 0)
Haha... Oddly enough this popped up tonight:

Long term Antibiotics use create oxidative stress which leads to some of the side effects www.sciencedaily.com/releases/2013/07/130703160623.htm

They suggest taking antioxidants... I'd try exactly this if I were you... Taking some serious antioxidants.
Posted 7/5/2013 4:57 AM (GMT 0)
you guys are awesome. thanks for the help.

jax, great that you are having some relief with the lightheadedness. it is annoying not knowing the cause.

tedd, I think I will have to find a neurologist. my pcp ordered the mri and said to see a neurologist if the test came back with problems. I have not heard of midodrine before. I guess I have to see what the mri shows.

pmedic, I've had very low blood pressure this year I've noticed. usually 80/50. I've been adding a lot of salt into my diet and it's now 90's/60's. the dizziness is anytime- sitting, standing, walking, laying down. it's the most noticeable when i'm in the still position. blood sugar is always fine and ekg's have come up normal. resting heart rate is between 76-84. thanks for your thoughts- too. the IVIG infusion was the worst thing that has ever happened to me. I will never forget it. I still have panic attacks and nightmares about it. I feel most sad for my mom because she just stood there so helpless while everyone was rushing around me and pushing her away. I wish we could both erase that day from our memories.

ah mark. i'm hoping you are right that it's just the antibiotics. I was thinking that in the last 18 months, I've been on antibiotics 6 times- flagyl 3x, cipro once, and vanco twice. the neuropathy started when I was on cipro/flagyl and it's never went away. I just didn't know antibiotics could cause these other issues. I started VSL again since it's the highest probiotic count I know of. i'm hoping that will keep the c diff away for good. the temperature thing is quite insane!!! this year is just ridiculously hot and humid. I need to find a nudist colony to live in so I don't have to bother with sweaty clothes anymore.

Posted 7/5/2013 8:27 AM (GMT 0)
Joanna here is to hoping everything turns out fine and these symptoms simply go away. I think it's either the B 12 or the vanco.
Keep us posted
Posted 7/5/2013 11:57 AM (GMT 0)
Joanna, good luck - and I hope they find nothing and that it's just nutritional or a side effect of the antibiotics, as CanadaMark suggested.

Is the dizziness vertigo or could it be syncope problem?

Will be keeping you in my prayers and thoughts

a big hug :-)

Posted 7/5/2013 12:02 PM (GMT 0)
I've had very low blood pressure this year I've noticed. usually 80/50. I've been adding a lot of salt into my diet and it's now 90's/60's.

I am sorry to hear how you are suffering like this. I usually don't respond to your posts because most of the time I haven't any constructive advice to give you. Diet and meds that might help other UCers don't seem to help you.

Perhaps cutting back on salt might work. There are other ways to raise your blood pressure besides eating a lot of salt. Maybe cutting salt intake would help your dizziness.

www.oprah.com/health/Causes-of-Dizziness
Finally, Borne made an appointment at the renowned Shea Ear Clinic in Memphis. Her vertigo was diagnosed as Ménière's disease—a fluid imbalance in the inner ear. A steroid injection eased the pressure in her ear, and doctors prescribed a low-salt diet to help reduce fluid retention. "I got my life back, 100 percent,"
Posted 7/5/2013 12:24 PM (GMT 0)
I need to find a nudist colony to live in so I don't have to bother with sweaty clothes anymore.

Ha Ha. My girlfriend is an avid nudist. We just finished a 3 month road trip through Florida and mostly stayed at nudist resorts. BTW this is yet another reason why I hate Florida. I am a naturist and many of the resorts in Florida turned out to be swinger clubs. AFAIAC the whole state is fooked.

OT: Here is an excellent article explaining why Florida, Miami in particular, is doomed. It is fairly long but you will get the gist by quickly browsing one sentence per paragraph.

It dovetails with our experience. For example they spray for mosquitoes so much that my girlfriend, a wildlife enthusiast, found some towns with very few birds. The Army Corps of Engineers website shows plans filling in more and more wetlands with no end in sight.
www.rollingstone.com/politics/news/why-the-city-of-miami-is-doomed-to-drown-20130620
Posted 7/6/2013 1:45 AM (GMT 0)
I hope it's not anything serious Joanna, just some vitamin deficiency that the doctor couldn't catch or some medication side efect.

In the future, if you're going to try LDN, I can help you out with the prescribing problem so just let me know.
Posted 7/9/2013 6:17 PM (GMT 0)
Jax I posted a reply to you the other day but I must have not hit submit or something because it did not post. I do not have low BP. I really have high BP but the Midodrine is used for another problem called Syncope. It is when your heart does not send enough blood to your brain. I have to be really careful because I do have the high BP.
Posted 7/11/2013 10:32 PM (GMT 0)
response to ewakedals-

thanks for asking about me!! well, unfortunately, it didn't work out. we've been having tornadoes, flooding, and really bad storms the last few days. our one car was flooded and rescuers were going around in boats saving people. it's kind of been a disaster. I ended up showing up for it last night though but the sky looked really bad and then it started to storm again. I got into the building and the power shut off. we ended up leaving and had to reschedule for next week.

i'm just sad because we were going to go on vacation next week but since we have to pay for the car's damage, we can't. we were lucky that we don't have damage to our house, but trees are down everywhere and lots of people don't have power.
Posted 7/13/2013 7:40 PM (GMT 0)
Hi Joanna, i've just read your message, i'm very sorry about these damages which spoilt your vacation plans, but fortunately it wasn't an earthquake! as for your MRI, you shouldn't worry, people i talk with on the Polish uc forum often have much more worrying symptoms, they do MRI and it turns out to be side effects of the medicines, which are, i think, identical everywhere. Also iron (i've just noticed you're taking) causes many side effects, my organism doesn't tolerate iron. Instead, i often eat very simple liver pate - you take 30 dag of chicken liver, fry it for 3 minutes on 1/2 tablespoon of butter, then mince it, put in a mold and bake in the oven for 20 minutes. I eat it on bread, because i'm not allergic to gluten. so again, i keep my fingers crossed for next week!!!
Posted 7/13/2013 7:40 PM (GMT 0)
Hi Joanna, i've just read your message, i'm very sorry about these damages which spoilt your vacation plans, but fortunately it wasn't an earthquake! as for your MRI, you shouldn't worry, people i talk with on the Polish uc forum often have much more worrying symptoms, they do MRI and it turns out to be side effects of the medicines, which are, i think, identical everywhere. Also iron (i've just noticed you're taking) causes many side effects, my organism doesn't tolerate iron. Instead, i often eat very simple liver pate - you take 30 dag of chicken liver, fry it for 3 minutes on 1/2 tablespoon of butter, then mince it, put in a mold and bake in the oven for 20 minutes. I eat it on bread, because i'm not allergic to gluten. so again, i keep my fingers crossed for next week!!!
✚ New Topic ✚ Reply
12