Do I Need An Official Diagnosis?

[abbyw]

Hi,

I am new here. I have been following your site for a few weeks and I really appreciate all of the information.

Here's my story.

I am a 37 year old female. Always considered healthy, even though I always felt that I was a "weak" type. I couldn't do vigorous exercise and couldn't do "too much" in one day, but other than that, I was fine.

I have had IBS for around six years. Around a year ago, I started having near fainting along with my stomach attacks. Then, I started new meds for my IBS, which were starting to work. In mid November (2 months ago), I had dental implants done, and I needed to take antibiotics. This, of course, made my stomach worse and I started having bouts of dizziness.

That week, I got up once in the middle of the night to get a drink from the kitchen, and I fainted. I thought it must be that I was about to have a stomach attack, but I didn't, and we chalked it up to a random thing.

That same week, when I went for my normal morning brisk walk, I came home and nearly fainted again, but I did not faint.

Since then, I get this dizzy feeling several times a day. I can get it standing or sitting. It is not always associated with standing up.

Someone mentioned orthistatic hypotension, so I stareted measuring my BP sitting and then 3-4 minutes after standing. There is consistently a significant rise in my pulse rate after standing ( from around 60 to around 90). My BP does not seem to be that affected.

I have also been cold - so cold no matter how many layers I wear, and I have this feeling like I am "jittery" or nervous inside.

My dr. told me that it is probably anxiety. I told her that I was not thinking any anxious thoughts, I just feel anxious. but she prescribed Lexapro anyway.

I researched OH,and discovered POTS. I felt like that explained everything. IT even ties in with the fact that I have never been able to tolerate novacain shots at the dentist, as that contains epinephrine, That has always made me feel as if my heart is pounding and I am going to faint.

My dr. had never heard of it, but she was open minded enough to look into it.

Meanwhile, I have been increasing my fluid and salt intake and I have been taking the Lexapro for 4 weeks now. ( The first 2 weeks on Lexapro were awful, but then I thought I was starting to stablize.) Last week I thought I was seeing major improvement, and I was accredditing the Lexapro and I went walking every morning (slowly) for 15-20 minutes and then actually ran some errands each day. But on the 3rd day in a row, I crashed, and then I was basically in bed for 3 days, I felt like I couldn't pick up my head. I still haven't recovered completely.

The question is, is there any reason for me to get an actual diagnosis - go for tilt table and other testing? (There are no facilities in my area that have a tilt table.) Or if I am doing everything that can be done anyway, should I just continue and the actual diagnosis is not really necessary?

Also, are there really people who just have this for a few months? I have only had this for 2 months (which has been enough, thank you,) but I read somewhere that you need to have the symptoms for 6 months for a diagnosis. Is that correct?

I appreciate your listening, and being my unofficial doctors, until I find one.

[icesktr189]

Lexapro really worked for me... that is the first med I took 4 years ago when I came down with POTS/OI and it was the most helpful one. I too had a horrible time in the beginning, but then I started to be able to drive and work again after about 2 months on it.

There is no time limit needed to get a diagnosis... just a TTT. I would request one if I were you and most doctors, even if they dont believe you, will humor you and do it. Most people dont just have dysautonomia for a few months. I heard of teenagers coming down with it and it going away in their 20's, but at your age, I dont think that it would just disappear. BUT you can treat the symptoms and find out what caused it.

Hope you get the answers you need soon

[firewatcher]

One important thing to consider is your insurance status. Once you get an official diagnosis of dysautonomia, you will be almost completely uninsurable. If you switch insurance, you will have to go without treatment for "pre-existing conditions" for at least six months before insurance would pick up the tab, and since the ANS controls everything, they can exclude just about any treatment they want. As for the government's free option, I am fortunate to not need it yet, so I don't know much about it. Even with a diagnosis, it hasn't changed my doctors' thinking or attitudes, much less treatment. Most just scratch their heads and say "well, it isn't normal for anyone else, but it must be normal for you."

On the flip side, there are things that can cause symptoms much like POTS and are "fixable" and might be explored. I'm personally sick of MDs, so I am not pursuing any further diagnostics. I did push and get the official dx, and while it has brought a justification of my symptoms, in my own mind; I can't say that it has helped with my treatment. It simply keeps the doctors prescribing the meds that help.

[Dizzysillyak]

Are you taking probiotics ? I just went thru a round of two antibiotics for h pylori and noticed

that both the h pylori and antibiotics made me oh and pots worse. It can take awhile to

get the good bacteria back and using strong probiotics and a variety is key.

On the oh, pots and novacaine link. I have these but i don't have any problems wih novacaine. The

problem with medical research is they select studies that prove their point and ignore those that

don't. Drug companies do this all the time. In fact, the fda just did this when measuring arsenic

levels in apple juice. Dr bessert discussed this about a month ago on tv. Originally, he disputed

Dr. oz's findings, only to agree later ..

Also, if I were you, I'd consider an elimination diet. Many of us have food intolerances, esp gluten.

Dr mark hyman has some good info on this. As does dr terry wahls ..

Tc .. D

[abbyw]

Thanks for your replies.

I tested negative for celiac in blood tests. Do those of you who stay off gluten do so becasue you have celiac or even though you didn't test positive for it? How long were you off of gluten before you saw a difference? ( I tried going off for 3 days, and it didn't help).

Does it sound to you like I can be pretty sure that I have POTS?

[Dizzysillyak]

I don't think I actually has celiac disease until 2005 and I had gluten ataxia from 1990 till 2006.

And I have the dq2 gene for celiac disease. So, I should've been gf all my life .. Gluten was

apparently damaging my brain before it damaged my gut. Dr hadjivassilou describes this.

The tests for celiac disease and gluten intolerance are currently being disputed by a variety

of doctors. Theglutenfile will explain this.

A definition of the diagnosis of pots is given in the homepage here. I've had at least 4 different doctors perform a poor

man's tilt table test on me since 1990. I started a thread on pheonix rising on how to do this at home. Just search for pmttt. I'm xchocoholic over there .. Be sure to read thru the posts because others talk about

how different we can be.

Tc .. D

[jackiemxoxo]

The only time I think a diagnosis is critical is when there is a viral or autoimmune link because treating those the sooner the better. But it usually takes months before you really know all your symptoms and can find an actual doctor who understands dysautonomia. I think starting the lexapro is a good idea too because it still works on your sympathetic and parasympathetic systems. Also, when i first came down with stomach symptoms my endoscopy indicated i was suggestive for celiac but my bloodwork came back negative at the time. I still continued to eat gluten for about a year and had the worst IBS ever. I previously had h.pylori and c.diff so I kept contributing it to the after effects of that. When a doctor suggested i cut out gluten after about a month I no longer had IBS and felt much better. Now, another doctor is testing for celiac again but also mentioned that because I had h.pylori and c.diff that these can change the gut flora in your stomach possibly causing gluten intolerance. He was especially concerned if i took the h.pylori antibiotics saying antibiotics can do that.(I never did for fear of the c.diff coming back but i know many of you have taken antibiotics for this). I am just mentioning this because I think you will find relief getting your stomach symptoms under control and exploring the possible cause of that depending on how bad they are.

[abbyw]

Thanks. My stomach symptoms have actually been better since this whole thing started. I sort of have the feeling that one hardship replaced another

What do you mean by there being a viral link? I can't imagine that there is anything that can be done for that,

[jackiemxoxo]

Usually symptoms present very suddenly and can land you in the hospital. When I got sick, it started with my heart then my stomach and then everything went haywire. But you're right I did not have a viral illness they could treat promptly but getting the treatment sooner than later can prevent more damage to the autonomic nervous system. I mean viral such as illnesses like Guillain-Barre or another autoimmune virus that can be helped with plasmaphareses or IVIG. It sounds like your symptoms have been gradual and usually with dysautonomia for the most part all you can do is treat the symptoms. If I were in your position I would see how sick you get and if you need to find a diagnosis. If you are managing your symptoms then that is half the battle. Most people i think need to find a diagnosis because they are so sick that they want to know the cause so they can get treated. I hope this makes sense. Dysautonomia can be caused by so many different things though that I was just bringing up one of them being a virus. It could also be caused by genetics, lyme, diabetes mellitus, pregnancy, trauma, etc... So these are just some things to keep in mind.

[icesktr189]

Thanks. My stomach symptoms have actually been better since this whole thing started. I sort of have the feeling that one hardship replaced another

What do you mean by there being a viral link? I can't imagine that there is anything that can be done for that,

Anti Virals can... I was on Valtrex for a couple months when I came down with Epstein barr mulitple times.

[janiedelite]

If you want to pursue treatment for your illness, getting a diagnosis will help because those doctors who specialize in POTS/dysautonomia will be more likely to accept you as a patient. If you feel that you may become disabled due to this illness, getting a diagnosis is very important. You don't necessarily need a TTT to prove POTS, as you already have done the poor-man's tilt test. If your doctor is willing, he/she could do this in their office and document the results. However, it sounds like they may not know what to make of the results once they get them .

Firewatcher has a good point that getting this type of diagnosis can make it difficult to get health or life insurance independently.

If your doctor feels it would be safe, you could try non-pharmaceutical POTS/dysautonomia treatments like compression hosiery and increasing your blood volume with extra salt and fluids. Those things wouldn't require a diagnosis to prescribe them. Best wishes!

[Chaos]

Hi! Welcome to the forum. Glad you've found some helpful info on here.

A couple thoughts....

Getting a diagnosis is a double edges sword. For me it was helpful because I had gotten incapacitated and was off work for 9 months. I needed some type of diagnosis to justify the time off. Also, I too kept getting the "anxiety" or "depression" diagnosis and I knew that wasn't the cause so wanted to know what it was in the hopes of getting a better treatment plan going. And the meds that were started did help me enough to get back to work. Alas, I keep having flares that send me back to bed, but it's all still a work in progress. LOL

You mentioned having a HR change from sitting to standing. Have you done a full Poorman's TTT? You could do that at home and then take the results to your doc. They can do it in the office too, but you'll likely need to explain it to them.

If you have a doc that's willing to treat you symptomatically and will read up on the condition she can probably do about as well as the "authorities" can. Honestly, most of this is all trial and error with meds because none of us on here can tolerate exactly the same meds as another person.

Do you have any reason to suspect you have a connective tissue disorder. Are you very flexible?

If you've read the research or info on the main page then you've probably seen that there are several "sub-types" of POTS. I think a lot of us have had various symptoms for ages and then have a "trigger" that really sends us over the edge. It could be that you can be treated symptomatically now without an official diagnosis but this might be something to keep in mind if you don't get better or if you start having more problems down the road.

[bellgirl]

I went 13 years without a diagnosis, but to be honest, I wish I had had a doctor to know what was causing all my symptoms, so I could better take care of myself. The good thing is, I had listened to my body and started taking steps on my own to compensate for my symptoms, but after awhile, I was desperate to find a doctor. My husband was only working part time, and we bought our own insurance, which wasn't very good, but I went anyway. He did go full time, just in the nick of time, so that it kicked in on the day I had my colonoscopy, and I was diagnosed a week later, after finding some wonderful doctor's in Birmingham. I had severe vertigo and dizziness, and I was at risk driving, nauseated all the time, couldn't sleep (because of increased heart rate), and had lost 10 pounds. I never thought I would say this, but I am very grateful for the medication I am on to help me, along with a Cpap machine to help me sleep! I'm not as dizzy, I'm sleeping, which is wonderful, and I'm able to eat more and exercise, which I could barely do before my diagnosis.