Diagnosed "orthostatic Intolerance" - Struggling/help Please

[teagirl]

Hi all,

First post, I could use some advice.

6 weeks ago I had a bad stomach flu - lasted only 3 days, but I haven't been the same since.

A week after I kicked the flu, I had a bad case of vertigo, nausea, tachycardia, and shaking. Called 911 when I thought I was dying...they filled me up with IVs and I recovered. (They said I was dehydrated).

Same thing happened 4 more times over the next few weeks, and ultimately I was admitted to the hospital for a day. Again, diagnosis of dehydration.

A pattern emerged whereby standing and walking for any period of time would bring on the symptoms...

They checked my orthostatics (BP, pulse) and noted "orthostatic intolerance" with a rise of 38 BPM in the standing positon. It was checked 3 times. Interestingly, my blood pressure has not changed (it's always been low), but the pulse races in a vertical positon, bringing on all the symptoms.

Now I'm unable to walk and I'm in a wheelchair for fear of the full blown attacks. I am nauseated all the time, and I have "bursts" of warm tingling in my head, especially when I try to sleep. I also get tremors and shaking when it gets bad.

I've had nearly every test done (MRIs of brain and abdomen, blood tests, urine tests, etc.) but so far no smoking gun. I've seen a cardiologist and my EKG checked out fine. He was familiar with orthostatic intolerance and POTS and ordered a tilt table test, but unfortunatley that won't happen for another month.

My husband wants to take me to Mayo Clinic in Scottsdale for full tests, but they say they don't accept patients until a POTS diagnosis has been made.

I also just developed a rash on the sides of my face and neck.

In the mean time I am miserable and immobile, and losing weight due to lack of appetite. I am also very sensitive to temperature changes.

Historically - before my flu incident - i would get 'head rush' when standing up, irratable bowel syndrome, and gluten intolerance.

I am desperate to understand what is going on - do these specific symptoms seem like some version of POTS? Also, any suggestions for how I could fast track some type of better diagnosis and treatment? I am located in Northern California.

Thanks for any advice.

Teagirl

[Guest Hanice]

Hey Teagirl and welcome!

It sounds to me like it could definitely be pots. Many many people start out the same way.. a flu a fever, mono.

Mayo sounds like the best hospital to me, and Cleveland sounds great too. It is so hard to find a good/knowledgeable doctor.. I really hope you are one of the fortunate ones that finds great doctor that you can be comfortable with. I haven't found one that even really knows about pots/dysautonomia in depth.

I dont usually have an appetite and when I do I feel happy :-P I force feed myself because I'm scared of going into a relapse and loose a whole bunch of weight. It happened to me once where I was convulsing after taking nutmeg(!) And the next day I woke up almost 10 lbs lighter. So I will never keep myself from eating even when I'm not hungry.

Keep in mind our symptoms (if you have pots/dysautonomia) are only the same for a little while, they are constantly changing. It can be scary but know that its a part of pots (if it is that you have it ofcoarse)

I STAY AWAY from nutmeg. It has a chemical in in called myrsticin that gives tachycardia and all sorts of horrific things including convulsions. I didn't even know I was having convulsions, I thought it was nervousness that had me shaking lol.

Just keep on looking for answers. Thats what i think we all do.

Its also important to not be immobile! If you ever feel a little burst of will/energy I would take it as a gift and I would move as much as you can (unless directed otherwise by a doctor)without overdoing it.

I know that when my nutmeg incident I couldn't do Anything for about two months.. It was horrible. Just recently I started to take my kids out to the playground again which is a major blessing!

Also remember, most people diagnosed with this get better on their own with time, they get to be nomal again. So always stay positive. I wish you the best.

Get better and welcome to dinet!♥ I wish you a swift return back to health!

[KareBear]

Hi Teagirl,

Since u had some symptoms, though milder, even before ur flu episode it's possible u have had a milder form of POTS for a while and the flu illness just made it worse or aggravated it?? Just a thought. I know a lot of people have mild POTS symptoms for many years and they are able to function and have normal lives until some event (like pregnancy, childbirth, illness, major accident, physical/mental stress) seems to exaggerate their symptoms severely and completely change their lives.

The tilt table test will be helpful in knowing for sure if it's POTS and I hope that maybe bcuz u had milder symptoms before getting the flu that u can get back to ur normal health soon and ur symptoms decrease over time there is always a chance and never give up hope. It can be different for everyone so dont assume this is a permanent thing for u. If it is POTS, there are some meds that help many people so just hang in there and get ur test done and hopefully a diagnosis so u can be treated. Good luck to u!

[dmjl27]

Wow, your story sounds so so similiar to mine! First thing u need to do is get a good doctor who will listen and be aggressive with tests and be open to autonomic testings. Sometimes a doctor referral can help you get into a good clinic sooner. I know it got me into Mayo in just 2 weeks.

Do your homework online...be armed and prepared with a list of questions. If he/she doesn't suggest a tilt table test, you should suggest one! In fact, you might need to be firm about it. The QUICKER you find out what's going...the better your chances in some cases. I know I got sicker than I needed to be because it took so long to figure out what was going on with me before we began any treatment. And being in a wheel-chair and bed bound, I can tell you, please please do your bed exercises. Stay as strong as you can. With a constant dizziness, I know this is very difficult, but it can also be the difference in months of PT or worsening orthostatic intolerance.

Get online...and research the leading websites for OI....don't just take the doctor's pamphlet info on it. It can be devastating if left untreated and many doctors, unfortunately, are not well versed on that side of the condition.

Best thing you can do is stay as active as possible, do your homework, and be aggressive!

I wish you all the luck in the world! My story didn't end well, so I try to encourage everyone to jump 2 feet in and get started!

[teagirl]

Hi Hanice, KareBear, and Melanie,

Thank you so much for your helpful advice and words of encouragement! They are very, very much appreciated. It's comforting to know there is hope. As I begin this journey, I wish all of you the best in yours as well!

[corina]

Hi teagirl, welcome to the forum!

[looneymom]

Hi Teagirl,

Sounds like you've had a rough go. POTS and flu does not mix. My son went through this same thing last January. He is still not back to the level of functioning that he was before it happened. He was able to stand and walk before having the flu. He is now confined to a wheelchair. He has tremors from waist down off and on. He is not able to stand or walk now. We have had more testing done and are continuing to search for answers. Our cardiologist has been very supportive and does believe that something underlying is causing my son's POTS condition to worsen. Please feel free to p/m me if you like. I feel for you because it's frustrating to loss the functioning level you had before an illness sends you down hill. Hang in there. You've found a forum of people who care and struggle to be functional after an illness or flare comes. It does sound like POTS. The MAYO in Minnesota will diagnosis POTS in kids. I would assume they see adults also so you might check them out.

Rachel