I am now into my 4th week of a period where I am really struggling with dizziness. I know in my heart that I have D/A but my factual side is not convinced. My cardio seems to continuously give me vague answers of which i'm not sure if she believes what she is saying or whether she is also trying to convince herself. I'm sorry that this is going to be a long post but there are no docs here in Melbourne that can help.....so here goes...

About 2 years (when i was 21) ago after a flu vaccination I became dizzy (I had an allergic reaction so they gave me a cortisone shot. I had pre-syncope and ever since I have been dizzy). After a week of resting I felt okay with some vague lightheadedness and went back to work. Driving to work I had pre-syncope again and this happened 3 times so I stopped driving due to safety. At this stage I noticed palpitations, medication sensitivity (used to be okay with codeine but not anymore), that constant dizziness/lighheadedness, pre-syncope and a weird moving feeling (ranging from back and forward to side to side). I had NO vertigo. I have always had cold hands and feet and my feet/legs always went red/purple (venous pooling?). I also had to sleep more than usual.

At first it was the old inner ear stuff after clearing me for anything major (MRI and CT for tumors)by a neurologist. I then had balance and hearing tests (normal). Then my GP ordered a holter monitor and that came back with 1 episode of sinus tachy 110bpm. I was referred to a cardio who ordered a tilt test and 24 hour urine test. The tilt made me faint after medication but it did not bring on symptoms that I usually get. Before that my heart rate was not high enough for POTS and the urine test I was just told I was normal. After seeing this cardio he said "you'll grow out of it". After my objection that I can't do nothing he said to try Florinef but also said "It's not like you faint 10 times a day or anything". I immediately changed cardio's.

I went to a electrophysiologist and he ordered an event monitor. Over a 2 week period it recorded 12 out of 12 recorded events of sinus tachy (110-160bpm) and a couple of ectopic beats. He said that he thinks I may have NMS but said there is no medication to help (Midodrine is not available in Australia). He advised increase in salt and water and again that I would grow out of it. He also said that my test was normal and I didn't get the results until my GP spoke to me about it and gave me a copy. Again at this stage I changed cardio's.

The next one is my current cardio. She is very nice and at the first appointment she said she knows what I have and it is orthostatic intolerance. She put me on Atenalol (beta blocker) for my heart rate and advised to keep with the increased salt and fluid. The Atenalol helped with palpitations but not much else. The cardio then suggested that I may in fact have a secondary vestibular disorder and referred me to see an ENT. The ENT was an ass (sorry but he was) and said that there is nothing wrong if balance testing is normal and concluded that I have anxiety. I went back to the cardio and after some stress testing she clamied that I was fine but had NMS and OI. I was not very convinced as after I did some research from the website she gave me (potsplace and dynakids) I realised that OI and NMS can only physically make you dizzy from 3 mechanisms: 1=Low blood pressure, 2=Heart rate variations, 3=Low blood volume (hypovolemia). I had purchased a heart rate and blood pressure machine after the second cardio and had been recording my vitals. My blood pressure and heart rate (after being on the Atenalol) is normal (give or take some variation). The lowest blood pressure reading is 107/69 and at times it actually is high. So that leaves blood volume.

After presenting this idea to the cardio and requesting a test to see if this is the cause of my dizziness after 2 weeks of dizziness where I have hardly been able to attend work and after 3 pre-syncope episodes she calmly told me that "It's not as easy as that. There are no tests in Australia that can see if you have low blood volume unless you are in a research study". She gave me a script for Citalopram (SSRI) and said to try it for 6 weeks or so. Now I don't like medication so I have not tried it but she is basically saying (in not so many words) that she has nothing else for me to do. I have tried Florinef but it gave me really bad migraines. The reason I question the blood volume issue is that salt and fluid don't help one bit and even after I lie down sometimes it takes 30min for the dizziness to settle.

So basically I am at the point where my options are to take a medication that there is no real proof that I need and run the risk of side-effects which I cannot handle. (no pay = can't pay mortgage = loose house).I don't want to go back to the "I don't know what you have so live with it" doctors but I don't know what else to do.

Does this sound like anyone's story and if so what does your doc say is causing the dizziness and what helps, if anything. Also if you know how to determine if you have low blood volume or not (other than an doppler test) please let me know. I am also interested to hear other people's stories....

If you have read this whole thing thank you for your time and patience.

Hi Rach - I don't know that I can offer any new advice for your symptoms but maybe I can offer some comfort to you in that our stories are very similar...

Dizziness has been my big plague from the beginning of this thing. I could never understand why I was still having such intense dizzy spells during those times when my heartrate and BP seemed normal. I was diagnosed with POTS, Inappropriate Sinus Tach, Atrial Fibrillation about four years ago. I have been on all the meds and also off of them due to developing toxicity and bad side effects. My body also developed a tolerance to some of them and they didn't work anymore.

I also was sent to the ENT and the neurologist. They both gave me contradicting stories for my dizziness. The neurologist did say he thought I might have a deep seated vestibular problem that is unrelated to my POTS and wouldn't show up on the ENT tests for Meniers (which I passed with flying colors - after I almost puked!). The ENT said I was having silent migraines (constantly?) and gave me a med that would have been very bad for my heart problems (a real rocket scientist)....On the advice of my cardio, I didn't take it.

I can definitely relate to your feelings of dizziness when you lie down. Often, when I lie down I feel like I'm rocking on a boat for some time. It's NOT vertigo or feeling like I do when I faint, just plain old dizzy/woozyness. I feel like I am battling gravity all the time, even when I am sitting. It's like when I finally slow down, I have to re-adjust or something. I often feel like I'm being pushed or shoved. Not a pleasant experience....

My cardiologist does think it has to do with blood volume and possibly there is something to the deep seated vestibular issues. He also said that our BPs and heartrates fluctuate so much........he says that when I have a weird episode of dizziness by the time I get my BP monitor on and check my pressure it may have normalized some. I do drink the gatorade and try to eat the salt but there are days when it doesn't seem to help a bit.

One new twist on my story. I have had extreme digestive issues lately. I had an upper endoscopy on Friday and had alot of inflammation throughout my small intestine as well as stomach polyps. My GI is thinking I have celiac and I am waiting for the test results. Apparently, that can cause episodes of dizziness depending on what was eaten. I hate to say I would like to have a disease but in this case I would be relieved if it comes back positive because it is very treatable through diet. Just something else to ponder....I know that digestive issues and bowel problems can cause dizziness for alot of reasons including pressure on the Vagal nerve.

Bottom line, I think some of my dizziness may be due to dysautonomia and OI, some may be vestibular and some may be digestive in nature. It's really hard to get through the day though when I feel so dizzy and unsure of myself. I know I didn't really help you with advice but I always find comfort when I hear of someone else having the same symptoms I do. I wish you the best of luck and please let us know how you make out.

Hi Trebleclef,

So good to read your story. Your right, it does give me some comfort to hear that I am not alone with this, although if I could wish everyone's D/A I would. I just came back from an appointment with my cardio and it's official....I have chronic OI and NMS. Basically like you my issue is low blood volume and it sucks but there is not much we can do about it. My cardio said that people who are very dizzy and have normal blood pressure are always the hardest to treat. I had a referral for some specialist (the only one in Australia) but found out tonight that my cardio works with him on his D/A research and they are working together on our cases to help treat symptoms. She did not know I had this referral as I was just going to get another opinion. She's really nice and not the type of person to brag so after 12 months now that it's out that she works with the best in AUS it is comforting to know. She said that she wants me to go into one of their studies to find out more about the mechanisms behind COI and NMS but they are not looking for "our type" (normal blood pressure and constant dizziness) at the moment. She has asked me to go on an SSRI and then we will go from there. I hope it helps!!!

I will keep you updated about what happens with my treatment and please do the same. It's good to find others with D/A to talk to but it's great to find people that are so similar with symptoms. Take care and speak soon.

Rach---
as a side note question--- how are you with sulfites, sulfur dioxide, and sulpha drugs?

Rach,
Your story sounds so much like my daughter's. She is 11 yrs. old and has had POTS for a little over a year now. She also has constant dizziness with normal blood pressure and heart rate. She went thru all of the same tests at the beginning and thankfully, she was diagnosed only a month after the onset of symptoms. Her dizziness is that she says she feels like she's spinning and not the room. At the beginning and before being on any meds, she was always dizzy, even while lying down. Now, she gets relief from lying down. I hope that knowing there are others out there does help. I know when my daughter was first diagnosed, I found great comfort from this forum. To hear that she isn't the only one out there took some of the fear away. (I'm a worry-wart and I began to think the child was dying!)

I hope that you do try the SSRI that your doctor wants you to. I know my daughter would be much worse if it wasn't for the medications she is on. I do caution you to be patient with the process of finding the right medication. It took us almost 10 months to find a med that helped her daily headaches and we still haven't found a med to help her dizziness. (Florinef gave my daughter bad headaches also.) What works for one patient, doesn't work for another and it can be frustrating to get your hopes up and then , nothing happens.

How great that you may be in a study! I hope and pray that with the doctor's help and medications, that you'll find relief from your symptoms.

Take care,
Brenda

Hey Rach,

I know you said florinef gave you bad migraines. How long did you stay on it?

I also tried florinef, and I am someone who regularly gets migraines and headaches anyway, and I had bad migraine-like (though not migraine) headaches for about 5 days every day when I first started the florinef, but they went away.

It could be because I take B2 (which i'm not kidding was the best thing I ever did for migraines - I went from getting them every 2-3 weeks and anytime i got less than 8 hours of sleep to getting them once every 2 months or so), but it could also be because your body just gets used to it and the side effects wear off..

Just a thought..cause it does seems like florinef is the med of choice if your problem is indeed blood volume.

Have your docs mentioned maybe trying to give you IV saline? That's another thing that if you have low BV should help...you could try it once maybe and see?

Anyway, just some thoughts, sorry if I missed elsewhere where you posted about these things.

I wrote this somewhere else, but I'm very dizzy very often too. Including when my BP and HR are fine.

I tried Florinef for about 2 weeks and the migraines just seemed to get worse. I am going to be starting the SSRI's tonight (after I get them from the chemist) so here's hoping they work!!!

When I went to hospital one time after having a pre-syncope episode at work they put me on IV saline and it did seem to help but I don't know if that is something they can do reguarly here.
I hope I do get into one one these studies as I think that finding out as much information as possible about D/A in general and specifically my individual case will just help my doc to treat me more effectively.

Nitekitty - I may sound silly but I don't have a clue what all those things are. It seems that medications in AUS and USA are different or it may just be that I personally have never heard about them. What are they and what are they supposed to do??