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Dumpy
06-14-2009, 09:26 AM
I haven't responded in any of the discussions since I joined the group because I seem to be trying to keep up reading all of the threads and have gained a lot from all of you. Andrew I want say that I really appreciate this site. It is a lot of comfort to all of us.
I was diagnoised with WG in Feb. 08 and have done well with my recovery. I am stiil on 150 mg Immuran and 7.5 mg pred. every other day now and everything has been going well until about a month ago I had a spell where I got a dizzy, it was a sort of tingle feeling in my head (zone out as the nurse said) It only lasted for 30 to 45 seconds the first time and went away then about 45 min. later it happened again but it did it 3 times in a row within about a 15 min span and after that it happen again 4 days later. It really scared me and I went to my GP and he sent me to my cardiologist and to see a neurologist. They have done Echo's, EEG,EKG,Nuclear Stress and put a monitor on me for 24 hours and have not found anything. After my last doctors I thought maybe it was just something that happened and went away because they have not had any explanations with the exception that my GP noticed that my blood was slightly enemic and put me on some folic acid and B-12. I really thought it was gone then 2 days ago I had another one that lasted for a short while but the bad part is that I actually black out for a short time.
Just scared and looking for some answers. I have an appointment with my cardiologist in 2 days. I just don't which doctor to go see if he doesn't have any answers.
Once again you guys don't stop because I sure enjoy reading about the rabbits and kangaroo's

andrew
06-14-2009, 10:45 AM
Andrew I want say that I really appreciate this site. It is a lot of comfort to all of us.

Glad you're getting help form the site. Always good to see!

I think Pred can cause dizziness but not at that dosage I would think. Is your BP stable? Sudden drops or rises in your BP can cause dizziness too. The blacking out worries me. Would love to hear what the cardiologist says.

Did you have a dizzy spell when you were on the monitor? If not, they might want to try it again until you do.

Take it a step at a time and see what the cardiologist says. We can all put our heads together after that and see what we can suggest as your next course of action unless 1) your cardiologist has an idea and 2) someone else can suggest something now.

crackers
06-14-2009, 10:49 AM
hi dumpy.you're not on your own when it comes to the dizziness.for the last few weeks i have also experienced dizziness but only when i stand up.i also blacked out but only the once.i have had my blood pressure checked sitting and standing up but there was little difference.i mentioned it to the nurse at my doctors and she put it down to the meds i am on.i'm not so sure and will bring it up with my rheumy next week.i will let you know what she says.
john.

Sangye
06-14-2009, 10:56 AM
How scary for you!

I'm have some questions :
1) Have they done a brain MRI?
2) Are your docs Wegs specialists?
3) Are you certain that you black out (does someone witnesses it) or do you just feel like you black out? (I'm not doubting you--there's a difference between the two)
4) Are you on any other drugs?
5) Do you have any other symptoms at the time-- eg, can you tell it's going to happen, nausea, sweating, weakness, racing heart

(Rabbits and kangaroos-- hey, don't encourage us....:D)

Sangye
06-14-2009, 10:58 AM
John-- that type of dizziness is most likely due to wiped out adrenals. (Adrenals help regulate blood pressure with positional changes) Stand up slowly and hold onto something when you do!

crackers
06-14-2009, 11:04 AM
thanks sangye.what do you mean by "wiped out " and what can cause that.
john.

andrew
06-14-2009, 11:09 AM
Wiped Out (Adj. 'wyp't owt'): buggered, totalled, all bollocksed up, maggoted, screwed, broken, gone, sctonkered, smashed, stuffed, bereft of life, pushin' up the daisies, singing with the choir invisible, snuffed it.

Sorry. Couldn't resist.

crackers
06-14-2009, 11:24 AM
thanks andrew i think i get your drift.
john.

andrew
06-14-2009, 11:31 AM
You understand I was trying to be funny, not having a go at you?

crackers
06-14-2009, 11:35 AM
i know mate.i was laughing when i posted that.you aussies..........

andrew
06-14-2009, 11:44 AM
Hehehe....whew.

rkm001
06-14-2009, 11:47 AM
My Mother always complained about being dizzy. She had an episode one day where she semi blacked out, meaning she was not responsive. She had one in the early morning, then again 4 hours later, and then again within 20 minutes. We ended up at the hospital, thinking maybe it was a stroke, but the MRI and nephrologist did not think it was. She did not walk very well after this and had extreme weakness.

crackers
06-14-2009, 11:52 AM
andrew it wasn't hard to notice it was one of your monty python moments.
john.

Dumpy
06-14-2009, 12:31 PM
Sangye I'll try to answer the best I can.

1) I had several MRI's when they were trying to find out what was the matter with me and I had 1 about 6 Months ago but nothing recently.
2) None of my doctors are weg specialist but my pulmonary doc has 4 other weg patients.
3) I guess to try to explain exatly what I fell is that my head feels like it has a numness that it is going into and coming out of and yes there is a period of time that I have no account of. It is a real tingley feeling, realy hard to describe. I can feel it as it is coming on but only just before it starts.
4) Yes I'm on Hydrochlorothiazide 12.5 mg, carvedilol 3.125 mg twice a day and bactrim 3 times a week.
5) After it's over with my face feel like it is flush and I'm sure my heart rate goes up just for the fear of whats going on I'm not sure if it a direct connection between the two. Every time this has happened I have been sitting down so it has not been from standing up to quick.
As far as I know my blood pressure has been good every time it has been checked which has been a lot lately.

Sangye
06-14-2009, 12:50 PM
The diuretic you're on (hydrochlorothiazide) has a drug interaction with prednisone (http://www.medicinenet.com/hydrochlorothiazide/article.htm). The diuretic causes a loss of potassium and other electrolytes, and pred worsens it. If your potassium levels drop, you can get all the symptoms you're having (http://www.emedicinehealth.com/low_potassium/page3_em.htm#Low%20Potassium%20Symptoms).

It can be tricky to catch a low potassium problem (Hypokalemia). Your blood work might be fine and then maybe you sweat more or don't replenish your electrolytes and Wham-- hypokalemia. Potassium levels can fluctuate greatly day to day when you're on drugs like that.

That would be my best guess, and it's easy enough to rule it in or out. Do you take a potassium supplement? If not, did they tell you to eat bananas or oranges each day?

Dumpy
06-14-2009, 01:03 PM
Well to start with I live in South Louisiana which doesn't mean much if you have never been here but this time of year it is very hot and the humidity is tuff and I am in and out of the heat just about every day. No nobody has every mentioned a potassium supplement.
Do you think I need to find a Weg Specialist? I'm not sure where the closiest one is to me. I live in Baton Rouge, Loisiana.

Sangye
06-14-2009, 01:42 PM
No nobody has every mentioned a potassium supplement.

(Sangye sighs heavily) Pred alone can cause you to sweat out too many electrolytes. And Louisiana, sheesh. Your diuretic is a thiazide diuretic, which means it causes potassium loss. (As opposed to "potassium sparing" diuretics) Your docs should either have put you on a daily potassium supplement or told you to make sure to eat foods rich in potassium every single day. Here's (http://www.buzzle.com/articles/potassium-rich-foods-list-of-foods-high-in-potassium.html) a good list. If you sweat even more than normal, eat more. Orange juice is great. It'll be easy to tell if this is the cause of your symptoms. (Make sure you drink plenty of regular water, too. Don't just drink juice.)


Do you think I need to find a Weg Specialist? I'm not sure where the closiest one is to me. I live in Baton Rouge, Loisiana.I think we all need Wegs specialists-- at least your local docs should be consulting one regularly. Your pulmonary doc's experience with 4 Wegs patients is just not sufficient. Check out the VF list (http://www.vasculitisfoundation.org/node/44).

coffeelover
06-15-2009, 04:40 AM
I am on that same diuretic and cannot handle the humidity very well either. Hmmmmm......I have been making these absolutely fabulous fruit smoothies and instead of adding milk, I have been adding the V 8 fruit fusion and oh....it is sooooo good. Maybe you could bring up your potassium levels by joining me each evening with a smoothie and a book?
Lisa

Dumpy
06-15-2009, 11:07 AM
Lisa,
The smoothie sounds good but I have never been much of a book reader.

JohnL
06-16-2009, 09:22 AM
I had one episode stood to quickly and went answer the door - dropped like sack of potatoes- I was toll it probabally was a blood pressure thing brought on by th meds. I still have to pause when I stand up to get my brain in gear.

jola57
06-16-2009, 04:40 PM
The meds are probably what causes the dizzy spells, hypokalemia sounds right if you are sweating a lot, Sangye is right, you should be on supplements. Doc's will treat once you are so far gone that they have to get you back on track but will not advise you or give you anything to prevent an episode like yours:(. Well one other option is to put on rabbit ears and hop like a roo, see if that helps:D

Doug
06-17-2009, 02:09 AM
The meds are probably what causes the dizzy spells, hypokalemia sounds right if you are sweating a lot, Sangye is right, you should be on supplements. Doc's will treat once you are so far gone that they have to get you back on track but will not advise you or give you anything to prevent an episode like yours:(. Well one other option is to put on rabbit ears and hop like a roo, see if that helps:D

Not a good idea for someone suffering hypokalemia: might fall on his or her hippo arse! Just saying.... :)

Dumpy
06-17-2009, 01:09 PM
Went to the cardiologist yesterday and he looked at my nuclear stress test and told me that it appears that I have a left bundle block which would cause my heart to sort of misfire. It is one the readings that he doesn't have 100% confidence in and told me that he would like to do a heart cath to make sure. So in about 10 days I am going in as an outpatience. At this point I would like to have the piece of mind that it isn't my heart either and if that comes in negative I plan on seeking out the Weg Specialist.

jola57
06-17-2009, 04:07 PM
good luck, don't stress too much this is just part of the bundle WG gifts us with.

Doug
06-17-2009, 04:41 PM
Dumpy, best of luck in the coming days. Waiting to learn results of test already done is nerve-racking enough, and it's only worse waiting, in your case 10 days more, a long time for the tests to be done in the first place. I'm with Jolanta. Work on keeping your stress level down. We're with you!
Let us know how it's going until the test results are back. We recently had an incident when someone (Whose name shall not be spoken! But we all know who she is! Ha!) had a trach removed and we waited for several days to hear about it. It was agonizing even though we knew it would be good news.

coffeelover
06-17-2009, 11:45 PM
OK Doug! I get it.......keep everyone informed.
So yesterday I went to my rheumy and she says all my numbers are looking good, my BP was great (128/60) I have never been as low as 60, so I thought maybe I was dead! ha!
She also is tapering my pred every two weeks a few mg to get me down to 10 mgs. That is really exciting to me! No trach and lowered pred doses, what more could a WEG girl ask for?
I know I will remain on the chemo drugs and some pred for quite a wile yet and that is OK.
Dumpy, I am hoping that they can pinpoint the cause and take care of the problems you are experiencing. I am hoping that my recent good news is catchy and you too will have solutions.
Lisa

Doug
06-18-2009, 01:08 AM
Speaking of low BP, one day at work a couple of years ago, I didn't feel very energetic, and I was a bit lightheaded. I asked the plant nurse to check my blood pressure: 72/45! Anyway, that's my own personal low, speaking of "How's that person still walking!" She or someone drove me home, made me get to rest. My boss wouldn't let me come back to work until I saw my GP and resolved the issue of low blood pressure. He took me off of BP medications I was put on when I had high blood pressure as a result of taking Prednisone. Lesson there, just because you hit remission,don't forget to review your non-weggies prescriptions with your doctors to see what might be unnecessary post-WG inception or flare!:D Yes, Dumpy, we are getting a bit particular about hearing good news, so, again, wishing you well and hoping you get good news!

coffeelover
06-18-2009, 01:10 AM
Speaking of low BP, one day at work a couple of years ago, I didn't feel very energetic, and I was a bit lightheaded. I asked the plant nurse to check my blood pressure: 72/45! She checked again, verified it was indeed that low. Anyway, that's my own personal low, speaking of "How's that person still walking!" She or someone drove me home, made me get to rest. My boss wouldn't let me come back to work until I say my GP and resolve the issue os low blood pressure. He took me off of BP medications I was put on when I had high blood pressure during my Prednisone days. Lesson there, just because you hit remission, ,don't forget to revied your non-weggies prescriptions with your doctors to see what might be unnecessary post-WG inception or flare!:D

Thanks Doug. Good advice. I would not have thought of that
Lisa

jola57
06-18-2009, 03:20 PM
Lisa you sound so chipper it puts a smile on my face.:D:D

Dumpy
06-19-2009, 11:23 AM
Many thanks to all of you for all of the support. It is really appreciated.

Dumpy
06-26-2009, 11:34 AM
Going in to have my heart cath done in the morning. I have'nt forgotten about letting everyone know what is going on. The cardiologist decided to put a monitor on me for 21 days to try and figure out what is causing the dizzy spells.
Went in to see my pulmunoligist today and he wants me to lower the preds from 7.5 mg every other day to 5 mg every other day. My sed rate was at 15 and he is real optomistic about getting me off of the preds and the immuran within about 5 are 6 months. Hopefully everything will go as planned. I know how fickled this WG is but we can hope and pray for the best right.

shazny
06-26-2009, 10:04 PM
Hi Dumpy

Good Luck !!

Doug
06-27-2009, 01:18 AM
Best wishes! Hope this helps bring things together for you! Doug:)

Dumpy
06-27-2009, 02:16 PM
I made it through the heart cath without any complications. Talked to the doc briefly after the cath. He said I had 1 artery (a smaller one lower down) on the left side that was 100% blocked but the heart had actually adjusted and had supplied flow from the right side. Also had another 1 on the right side that was blocked by 80%. They didn't put in any stents but want to treat it through medications. He put me on 30 mg isosorbide twice a day and 500 mg Ranexa twice a day. I haven't had time to see exactly what the meds are yet. I have an appointment with the cardiologist on the July 15 and will be able to get more details.
He also wants to do a tilt table test on me which I'm not sure what this is but I'm sure I will find out because I have to schedule it for next week.
I have to relax and chill for the weekend so I will be around reading threads.:cool:

Doug
06-28-2009, 03:56 AM
www.medicinenet.com/tilt-table_test/article.htm (http://www.medicinenet.com/tilt-table_test/article.htm)

Here's a bit of information on tilt table testing. Many others can be found on a Google search. Interesting business. I'd never heard of it until now, though I had low blood pressure until I joined the Weggies. Thanks for bringing this in to the discussion, Dumpy! :)

Dumpy
07-08-2009, 11:42 AM
Well we found out what the dizzy was all about today. I went in to have the tilt table test today which is odd in itself. The nurse was telling me that they do it 2 different ways. One is with and the other is without the nitro. My test was done without, I was put on the table for 5 minutes @ 30 degrees and 45 minutes @ 60 degrees. She was telling me that it is the angle that makes the heart work and if there is a problem you will either get dizzy are pass out which I did neither.
Well after rambling the tilt test had nothing to do with understanding what has been wrong with me. I have been having a heart monitor on me 24-7 for the last 14 days and yesterday my wife and I were in our back yard with the dog and I started to chase our dog to make her go to the bathroom some where else besides close to the house and when I did I got dizzy and passed out for about 2 are 3 seconds. Well I told the Doctor about it at tilt test and he relayed to my cardiologist and before my wife and I could get home my Doctor called me on my cell phone and he wants to put a pace maker on me in the morning at 11:00 A.M. which hit me like a ton of bricks. Later today I was able to talk to the doc again and he told me that when he went back to the company that was doing my heart monitor and read the graph the bottom lobe of my heart had stopped pumping for approx. 5 seconds which is what caused the dizzy and pass out spell. He was very concerned and wanted to go ahead and get this done, So wish me well and say a prayer and I will talk with everyone when I get back.
Just be in the hospital overnight then have to stay off work for about a week so I will be around for a few days when I get back home.

Jack
07-08-2009, 03:53 PM
I'm sure it must have come as a shock, but its good to have got a diagnosis and one that something can be done about. I have a family member who recently had one fitted and there really does seem to be nothing to it. He is now back at his job with no ill effects.

crackers
07-08-2009, 05:25 PM
it's better to have found this out than to let it go untreated.having a pacemaker fitted is a routine procedure these days so don't be too concerned.best wishes and my thoughts are with you.
john.

Doug
07-09-2009, 01:36 AM
I concur with my friends above: best to learn the reason and have the procedure taken care of. People I've known who had the procedure done noticed an instant improvement in the way they felt. I hope it works that same for you! (p.s. said the prayer for you and your family):)

jola57
07-09-2009, 09:35 AM
My aunt has had a pacemaker for the past 15 years and besides having it replaced once she has had no other problems.

Dumpy
07-12-2009, 11:33 AM
Well I had my pace maker put in and it really wasn't near as bad as I thought it would be. I went to the hospital at 9:00 A.M. and was preped for surgery at 11:00 A.M and guess who was late for the party (THE DOCTOR :eek:), he was only an hour behind. When he walked in and gave the word and they knocked me out and 1 hour later I was done and back in my room. After a brief stay I was discharged at 6:30 P.M.:D
Back at home now and doing really good and the one thing that I have noticed is that I have been able to get more oxygen into my lungs if that makes sense. It just seems like it is a lot easier to breath now.
I have a visit with the Doc next week to get the staples out and get some dertails on all that has gone on.
Thanks for all of the prayers.

Doug
07-12-2009, 12:24 PM
Congratluations! Good news for us all! :)

Jack
07-12-2009, 03:24 PM
Great news! Another problem overcome. :)

crackers
07-12-2009, 06:50 PM
well done.
john

Sangye
07-13-2009, 11:58 AM
I just caught up on this thread and was holding my breath to see how it would turn out. GREAT news!!! So glad it went well.

Dumpy
07-13-2009, 01:40 PM
Yes it has really been around the world tour. Great to have you back!

jola57
07-13-2009, 02:47 PM
Great news, glad it all worked out for you