Yet Another Introduction

[growltiger]

So let's see. 31 yr old male. social worker / researcher / web designer .

brief history. 10 years of unrelenting fatigue, occasional depression, occasional panic attacks, did I mention the fatigue?, exercise intolerance, sweats, IBS issues, gluten intolerance, etc.

diagnosed with CFIDS/ME, depression, anxiety disorder, etc etc etc

tried acupuncture, homeopathy, antidepressants, street drugs, rolfing, energy work, meditation, thyroid meeds, testosterone replacement, food allergy testing, a billion different supplements and elimination diets, etc.

lost a decade of my life, lost insurance, spent tens of thousands of dollars on various tests, special supplements, etc, mostly told its in my head, stopped believing in alternative medicine, stopped believing in allopathic medicine, dropped out of grad school, went back to grad school, stopped believing it was possible to feel better.

fast forward: a gluten free/dairy free diet plus regular exercise plus supplements plus a light box plus anti-depressants has me functional. not great but functional enough to get a PT job with insurance and get more interested in exercise. I get a heart rate monitor for giggles. Notice when I'm laying down my HR is about 60-75. When I stand up it goes up to 130-145 then settles at around 110. Exercise a bit. Notice how quick HR goes up to 150, 160, 180.

Google weird symptom. Land on dysautonomia. Read about it. Scour the forums. Notice that the crushing fatigue, the racing heart in the middle of the night or after alcohol, the food intolerances, the vertigo and dizziness after exercise, the IBS, etc all cluster together with the heart issues…..

So that's where I'm at. I'm a bit wary of believing that this time someone will be able to figure out something and I'll feel better, and a bit wary of the fact that there are no good answers, and a bit wary of try to get a diagnosis, etc.

I have been tracking my HR for about a month now. Some days it is fine, some days it is not. Some mornings it is bad but by afternoon better, sometimes reversed. No rhyme or reason except I definitely definitely feel worse when I have higher swings in my HR. Even if I'm not wearing my heart rate monitors I can almost guarantee that the afternoons I fall asleep for 3 or 4 hours that when I wake up and stand up I will have a heart rate of 130 or so.

So I guess, hello, nice to meet you all. Sorry this ***** so bad. I wish I could have my 20s back, but I'm determined to not let fatigue steal my 30s away as well. Any tips on how to get diagnosed? how to demand a tilt test? what to do if your tilt test is normal that day?

I'm terrible at standing up for myself with Drs and usually get shot down pretty quickly. I'm not even sure I can convince my GP (she's brand new, just got insurance last year remember?) to refer me to a cardiologist for fatigue issues. I briefly mentioned it at a checkup a month or so ago, just that I was thinking about it, and was dismissed pretty quickly and told I had regular blood pressure.

It *****, once you have a diagnosis of depression and/or panic, it's hard to get any symptoms taken seriously. It's immediately "all in your head". And even if it WAS in my head, that doesn't change the fact that 10 years of various treatments and every anti-depressant on the market haven't touched my fatigue so…what next….

somewhat scared of getting diagnosed with a different possibly chronic and not-easily-explained syndrome; but even more fearful I'll just be dismissed outright and everything will come back "normal"

[abnel]

Hello and so sorry to hear about your 10 year ordeal. What you just said about your heart rate spiking from 60-75 at rest and then to 130-145 sounds like POTS, especially if it settles at 110 which is more than 30BPM higher than at rest. I am not sure where you live, (sounds like the US?) but can I suggest trying to get a referral from your doctor to one of the specialists listed on this website or someone people have previously posted about and recommended. Not sure about the US, but where I live a General Practitioner cannot refuse a patient a request for a referral to a specialist. I would think the same applies elsewhere and you cannot be denied such a request, even where the General Practitioner regards the referral as unnecessary. The specialist would then hopefully refer you for a tilt table test. From experience, and many other's here on the forum, it is so important to see someone who actually has an interest in this condition. Most doctors have not even heard of it and others dismiss it as Chronic Fatigue Syndrome or ME/CFS. While there is some overlap, I am not convinced it the same thing and I think it is treated somewhat differently by specialists who have an interest in Orthostatic Intolerance. While you may have ME/CFS, you might also have orthostatic intolerance and that can be treated differently to ME/CFS, which from experience seems to be treated more on the premise that the condition arises from a gut dysbiosis. Yes you're right that this syndrome is another not easily explained syndrome, but I suspect there is more research being done into it than, for example, ME/CFS. I think everyone on this forum is hoping that one day there will be a breakthrough and researchers will find one unifying factor that explains the constellation of symptoms that is POTS.

[issie]

Yep, we've all been there - all done that - and all have the same fears. It is a hard, confusing, disabling syndrome - but when it's confirmed . . . it's like VICTORY! We know what we're dealing with and can get on with life. It is like relief and knowing we've not lost our minds - there is a reason for the way we feel. It's just no one seems to be able to figure out how to fix how we feel. That's why we all come together here and brain storm, research and discuss .. . maybe we'll come up with the solution . . .to this really HARD puzzle. I think you've found your place. I did all the natural stuff too, everything you named and it made no difference. There are some natural supplements that I feel have made a difference. But, I'm like you a lot of money has exchanged hands and I'm still in the same place as where I started. But, not so sure Western med is the answer either. I think we can continue to only put a bandaid on it and hope that the underneath starts to heal. Here's hoping we can figure out some of the reasons why we have the boo boo in the first place.

[Chaos]

Welcome! Sounds like a familiar tale that you tell. Sorry to hear that you've been dealing with it for 10 years, but hopefully now you can get a diagnosis.

When I was at Cleveland Clinic this summer for testing, the cardiologist there told me that she didn't think she'd EVER seen a patient in her autonomic lab that hadn't been labeled as depressed and anxious prior to getting to her.

I had years of symptoms preceding the "big flare" that took me out of work and functioning in life for months and months. Had dealt with a lot of the preceding symptoms with yoga and herbs as well as other alternative treatments. Then I got really bad (following a surgery) but when I tried to see regular docs they always wanted to blame my symptoms on the herbs etc. So stopped all those and just tried western med to find an answer. Found my own diagnosis thru this site and others out there. Printed several articles and highlighted any pertinent info that correlated with my symptoms and took that to my GP. He listened, said it sounded reasonable and that he didn't know enough about it to diagnose me. Went to five other docs who said the same thing. The last of the five finally sent me to an EP cardiologist that "had a reputation for listening to his patients at least." Luckily he knew a little bit about POTS, enough to order a TTT. I fully expected to pass the TTT just like every other test I'd had run that came back normal. Imagine my surprise when I failed it miserably!! How exciting!....in a sick kind of way. Subsequently have traveled to Cleveland Clinic and Mayo to get further testing and try to find some answers.

It was wonderful getting a "diagnosis". Now it's less wonderful because it hasn't led to a ton of answers, but I am definitely more functional than I was before I was diagnosed. And, I have a pretty good team of docs that are willing to work with me on my issues. It helps in many ways when you can say, "I went to Mayo and THEY said...." The local docs suddenly stop looking at you like you're crazy and sit up and take notice.

However, if traveling around isn't an option and you don't live near one of the big centers that have a specialist in this area, you might at least try calling cardiologists in your area to see if any of them have any experience with POTS or dysautonomia. It seems like EP cardios (electro-physiologists) tend to have more of an awareness of this condition than other cardiologists that I've seen. So, you might try one of them first if there are any in your area. That was who ordered my first TTT. While he looked at me like I was crazy at my first appt, once I failed the TTT he started looking at me differently. And after a couple more visits, he even complimented/ commended me on taking the initiative on my health and pursuing leads to get a diagnosis. (I almost fell off the exam table.! lol)

Hope you can find someone who can help get a diagnosis. Just having that helps a lot with the situation. Also, given how much overlap there is between people with POTS and people with CFS/ME it certainly seems like it may well be a part of the picture for you.

Sending you gentle hugs and lots of encouragement. Keep us posted. Good luck!

[potsgirl]

Growltiger,

You say you're horrible at standing up for yourself. Some pointers: 1. Write down notes as you think of things you want to address with the doctor, and make sure your doctor spends enough time with you to answer them; 2. Bring a friend/family member with you as an advocate! It's hard to remember everything the doctor tells you, and it would be a big help to bring an assertive person along to make sure you're getting your questions answered.

Now, Welcome to the Forum! As others have stated, it certainly sounds like POTS symptoms to me, along with the possibility of chronic fatigue syndrome and other issues. You need to get to a specialist who deals with POTS patients, and get a diagnosis. Many of us ending up going to the Mayo Clinic in Rochester, MN, or they have a great specialist in Phoenix, AZ. Cleveland Clinic is another great place to go. Have you had a tilt table test yet? I was diagnosed at Mayo Clinic in Phoenix, but was also seen in MN. These places are worth the time and energy for a diagnosis. If you become unable to work again, you'll need a firm diagnosis to file for disability. That's what I ended up having to do.

If you have any questions about Mayo, please feel free to PM (personal message) me. Hang it there - you've come to the right place.

Cheers,

Jana

[Sarah4444]

Welcome, and as Jana says, it looks like you have come to the right place. I just wanted to warn you that you might still be in for some challenging times depending on how lucky you get with you doctors, but at least now you can start to explain your symptoms to yourself and not be so frustrated. I can't describe the relief I felt when I first came here and as I learned more about what was happening to me, but I think I then expected doctors to just understand too. POTS and all it's accompanying disorders are still poorly understood by most doctors so read a lot and be prepared to be patient and to explain a lot. I find it sometimes helps to bring studies in for doctors to look at. Some won't take the time, but for those who do, it starts to built their ability to help you. While anyone can relate to things like pain and fatigue, I think we don't realize sometimes how different we are and how hard it is for healthy people to conceptualize what it feels like to have many of the symptoms arising from chronic orthostatic intolerance.

[Yolaclover]

Hi growltiger,

I think it sounds like POTS too and I hope you will have a diagnosis soon so you can start trying to find a way to effectively mangage your symptoms. I will never forget how good it felt to have a diagnosis!!! Everyone telling me it's panic, anxiety, it was so hard doubting myself and being so confused and feeling somewhat bullied by all of the professionals I was seeing.

Where do you live? I'm in ny and I'm going to the NYU dysautonomia center. I have no idea what to expect, I have never seen anyone post about it on these dysautonomia forums. I'm excited to let people know how it was.

It is a rough road with dysautonomia, no matter how great the specialist we are all different and finding the right mix of treatments is challenging, what works one year may not work the next, it's not like other illnesses that people have heard of and that can be frustrating. You are on your way though!!! Please keep us posted on how you are doing, I'm like you, not the best advocate for myself, i have found myself crying in front of my regular dr. I just took the info from the dysautonomia center to my doctor and he wrote the referal, it was easy and trust me, he's not a warm, fuzzy guy, he's Russian and is "always right". lol! Good luck!

[Godsgal]

Wow....what a mess you have been through! Well I feel confident enough to say you have found the right forum and you are getting somewhere! Finally!

Get to a POTS specialist asap and they'll give you the TTT. If you're not close to one, find an electrophysiologist and call ahead to make sure they are familiar with POTS.

Now look at the home page list of things that help and things to avoid and do them so you can get relief!

Take care and feel some relief! You're on to something now.

[growltiger]

Hi all -

Thanks for the welcome and the support.

I am actually in MN. I tried to self-refer to Mayo, but was denied. I am currently waiting to hear back from some other doctors practicing at the University here that are mentioned in the resources section here. My biggest worry right now is that I'll "pass" the TTT and then be back at square one even though there is something going on with my HR.

Most people have fantasies of winning the lottery and retiring to the Caribbean. I have fantasies of winning the lottery and being able to hire my own personal team of doctors.

[Yolaclover]

I fantasize about a real life Dr. House and his team diagnosing and curing me

[juliegee]

Don't we all ???

[Christy_D]

We were sent to a Diagnostician at St Louis Childrens Hospital and we were told he was just like Dr House! I was so excited, and then after speaking to my son for 10 minutes informed me my son was depressed! I was so mad!!! He was definitely no Dr House! I had my hopes built up so high just to get the same song and dance of Depression/Anxiety. That's when we decided to go to Case Western in Cleveland to see the doctors who know what they are talking about.

We stopped wasting our time with doctors who didn't specialize in POTS/Dysautonomia....

Christy

[potsgirl]

It can be difficult to get into Mayo unless your doctor refers you. If you get that referral, you should have no problem.