Introduction And Plea For Advice/help

[bluesky]

Hi Everyone, I'm new here and like everyone else I have a long story -but I'll try to make it as short as possible. I apologize ahead of time if this post is a bit long and thank you to anyone who has the patience to read it through.

Six years ago I became very, very sick and was pretty much bedridden and unable to function for almost a year. I never recovered full functioning and about 1/4 of the time have had flare-ups and became very sick again. Last December 26th I had another flare-up and this time it stuck around and I'm still trying to crawl back to minimal functioning. I am very scared and am not able to get a diagnosis or any help. In the meantime I am a widown with 2 children to support and have had to abandon grad school and desperately need to work but can't. I think I have a lot of symptoms that are very much like POTS - tachycardia on standing and exertion - the worst is taking a shower which can raise my hr to 150 and wipe me out for days, dizziness, almost-fainting, deliriousness, high blood pressure (although that's new-ish), a horrible weak, shaky, gnawing feeling like I haven't eat in several days that is absolutely debilitating, muscle twitches, electric-like shocks that hurt where they end (I hope that makes sense), headaches, horrible brain fog and loss of memory, absolutely no stamina, and recently my knee and left leg have gone numb, the muscle above my knee becomes extremely tight and - just yesterday - I twice had a hard time moving my right hand. I'm sure I'm forgetting other symptoms - there seem to be so many, but that's the basic picture. By the way, POTS is the only disease/syndrome I've come across where people also suffer from that weak, hypoglycemia feeling which really makes me hope that maybe I'm on the right track.

Here's my question: I've tried doing an amatuerish at-home tilt table type test where I check my hr after lying down for a few minutes and then while standing. Often my hr will jump within 10 minutes, more often in the morning than in the evening. First thing in the morning it will often go from 88 to 125 - but sometimes not. Often during the day, particularly if I'm feeling sick it will go from 95-100ish to 120ish, but again, sometimes not. I wish I had paid more attention when I was really, really sick but I didn't know enough about POTS. I can't find a cardiologist who knows anything about dysautonomia locally - in fact I've had a couple of terrible experiences. I'm desperate for a diagnosis, but I'm broke and would have to put a trip to Mayo or anywhere else on credit cards-and I can't work and we are living off my kids' social security. What I worry about is what if my guess is wrong? Has anyone ever had a phone consultation with a specialist before they go to the huge expense of actually going there? I've considered just throwing myself at Mayo and hoping they could diagnose me in general without specifically asking for one of the dysautonomia specialists but I have heard a lot of people haven't had good experiences with that.

One more question - has anyone taken a ttt when they were very sick and it showed POTS but when they were feeling better it didn't? I feel like that is what would happen to me - the ttt wouldn't always show hr>30 or 120 absolutely every time, every day. I just have some very terrible days and some somewhat better days when my heart isn't so whacky.

Okay, this one last thing - I think my mother suffered from something very much like POTS. Does anybody have a family member with it too? She was always completely physically overwhelmed and exhausted. She lived a miserable existence because almost everyone in her family and my father blamed her for not being able to function. I'm sure she blamed herself too. To be honest, I live in fear of repeating her life.

I'm so happy to join this forum and find other people who at least can understand what it is to struggle through every single day. Thanks for reading this - I know it's long - and thanks for your help!!!

[Ernie]

Hi,

Welcome aboard,

Depending on the severity of your case and on your symptomatology if you have good days and bad days it is possible that you could do a TTT and have a negative result. Try to schedule one when you are in a slump to give you a better chance of a positive result.

I have a large family with many members who are affected with this disorder. I am the first one who was diagnosed. Almost 30 are officially diagnosed now. I help my family to find competent doctors to take care of them and I accompany them to their appoinments to make sure that the doctors believe them, respect them, do the proper tests, and give the good treatment.

In my family (extended family) it is considered normal to faint and be exhausted because almost everybody faints and is sick. We have six generations of fainters so we don't judge each other for being sick. On the opposite, we are raised to take care of each other.

In a way I was born in the wrong family because I am sick, but on the other side I was born in a good family because we have good values for taking care of the sick. We are closely knit.

[mrsdavidson8605]

Hi,

First of all I am sorry to hear you are having a rough time, but glad you found this forum. It's great to be able to bounce thoughts/ideas off others.

From my experience with the Mayo (I went to the one in Az), it is almost IMPOSSIBLE to get in as a new patient without a SPECIFIC diagnosis (ex syncope). So you NEED to have a TTT done. I would suggest just talking to your PCP about this. You may have to be firm and request it. Unfortunately, sometimes you have to be that way so docs will listen.

As for the TTT, you never know how the results are going to go... I wouldn't worry so much about that, but I would just focus on getting the test done. As for me, they were going to give me medicine to "induce" symptomatic problems if I didn't pass out within a certain amount of time (sorry, can't remember what drug it was).. they didn't even have to use the medicine though, because I passed out after 14 minutes... Not sure if this is standard, but basically the medication will tell them how your body reacts to the environment, therefore telling them what they need to know... so maybe that will ease your mind about "having" to pass out (I know that sounds funny, but I was the same way; worried I wouldn't... believe me, if you have POTS, the TTT will reveal it eventually.. may take a couple times, but usually the first time does the trick)...

anyway I hope that helps. Hang in there.

[bluesky]

Ernie - thanks for your reply. You have such a great family! I always wanted a big, loving family like yours. They just sound like wonderful people. Can I ask you how you managed to find a doctor who could diagnose you? I'm not having any luck at all. I called around for an electrophysiologist who was familiar with POTS and I saw him today. He was very arrogant and everything he said about POTS was wrong - that it is only a diagnosis of exclusion like chronic fatigue, there is no diagnostic test, there is no treatment and nobody ever gets better. Really, he was smirking and awful. Where do other people find knowledgeable doctors?

Kansasgirl8605 - wow, that's good to know about needing a diagnosis. The awful cardiologist I saw today said he'd schedule me for a ttt even though he clearly thought I was crazy. I think I needed to hear from you that I should stop worrying about the results and just get the thing done. I guess I'm just so desperate for a diagnosis - I get full of despair when a test comes back negative even for a horrible disease like lupus or some type of tumor. But you're right, I just need to get one done. Thanks so much for your reply!

[jump]

((Bluesky))) I'm sorry you're going through such a hard time!

My doctor did tell me that false negatives for TTTs happen all the time while false positives do not -- in other words, if you have a TTT and you faint, it's a confirmation of diagnosis, while if you have a TTT and you don't faint, it doesn't mean you don't have POTS.

My doc also told me that diagnosis of POTS and several other things in the dysautonomia spectrum are diagnosed "clinically," meaning you may have lots of tests done to help with a diagnosis, but the deciding factor is the doctor listening to your personal history. For example, I don't have low blood pressure upon standing, so when I first had a TTT it came back negative; also, they did the test in the afternoon on a day when I happened to be feeling better than normal. But when I went over my history (I kept track of all of my symptoms for a week) my doctor felt it was obviously POTS, despite the fact that my TTT had been negative. And when he looked back at my record, he did notice that although I didn't faint, my hr went from 55 supine to 150 upright during the TTT -- something they originally overlooked because my bp didn't change and I didn't faint. He still had me do a few more tests to rule out sinister causes, but the diagnosis was based on his medical interpretation of all of my symptoms, not on any one test. So if you do have a TTT and it comes back negative, make sure you still pursue some kind of diagnosis -- basically what I'm saying is, if you get the test and they say there's nothing wrong with you, it doesn't mean there's nothing wrong with you.

Also, consider making an appointment with a neurologist instead of a cardiologist, and don't be afraid to say you've done a lot of research and autonomic dysfunction is the only thing you've found that sounds like it might be what you're suffering from. Also, be very specific when you describe your symptoms about how much they are interfering with your daily life -- in my experience, doctors are much more interested in "getting to the bottom of it" if it's seriously impairing you. When I first sought help for this, I would just go to my PCP and say, "well, I don't know, my heart does this funny thing...." It was only when I said "I can't stand up to teach my class and I can't go for hikes that I used to be able to hike last month" etc. that they really paid attention and took me seriously.

Good luck, and I hope you find someone who can help you.

jump

[jump]

oh and PS -- My mom has diagnosed NCS, although it was never really treated and after she went through menopause it went away. I do think this stuff runs in families.

[ajw4790]

Hi! Welcome! I think you have been given good advice. If you feel that your symptoms fit POTS/dysautonomia try autonomic testing, ideally when you are not at your best and make sure to follow directions on not taking meds etc. I hope that you can find some good helpful info. from this testing. Also, I think it is very important to find at least one good doctor that will listen to you and work with you to figure things out. It does take time and work to find one. I can't remember did you say were you are located- so people can give you hints of good drs?

Also, it is important to take care of yourself to limit your symptoms. It sounds like your life must be incredibly stressful etc., but to try to limit what is going on good sleep, good eating habits, exercise, and hydration are key. Not to mention trying to find ways to reduce the stress and deal with it positively, which can be incredibly hard to do.

And, yes I am another one of many that sees dysautonomia symptoms run in their family.

I hope you can find some relief!

[mrsdavidson8605]

you're welcome. I know that it can be difficult because I HAVE BEEN THERE TOO!! actually in the same shoes you're in right now. I remember feeling the exact same way. Unfortunately, having the dx doesn't mean you're going to be instantly healed or that doctors will even know what to do, but at least you will have something, some proof that you're NOT crazy and there IS something physically wrong.... just don't be suprised if, even after the dx, some docs still look at u that way. it's just that there isn't enough research out there on POTS for docs to get a real grasp on it. I hope that you can get the TTT done as soon as possible... stay strong!

[bluesky]

Thanks for your reply, jump, that was full of good information. Although I've never fainted I can walk around all day feeling like I'm on the verge of fainting. What you say about a lot of false negatives makes sense. Thanks!

Jump - I've tried 2 cardiologists - one was an electrophysiologist. My pcp isn't any help at all. Your suggestion about asking if anyone knows any doctors locally is a really good one. I tried asking on another site and wasn't able to get any help, but hey maybe somebody here knows! I'm going to post a new topic for that now. Thanks for your reply, it's so good to get some help.

[Ernie]

Hi Bluesky,

I really had a hard time finding a doctor. For 30 years doctors were telling me I was a nut case, I had conversion disorder, Munchaussen, etc.. So one day I decided to search on the internet (actually it took months to find the doctor) and I found Dr Goldstein at NIH. I called them and asked them if they were interested in studying a person who fainted every single time she was standing. So within 3 weeks I was at NIH. They gave me the diagnosis and the medical proof that I was physically sick.

So I came back to my country very proud and showed it to my doctors. Then I found new doctors who were open-minded enough to believe the medical reports from NIH because the old team thought that I had made up those proofs. So it took another 5 years, and seeing 60 doctors (like interviews) to find the gems that qualified to treat me and my family. Now, some of the jer... who mistreated me want to have my family members because we are a first in the world but my family does not want to go to them. We are sticking to doctors who respect people with rare, unkown disorders.

So in my case it was years and years of research and interviews with different doctors. It took a lot of perserverance and I was ridiculude so often that I don't even count any more. That's why I check on my family to make sure that they don't go through the sufferance I went through.

The doctor that did me the most harm was the first syncope neurologist in my country. He wrote on my medical file that I had Munchaussen and then no doctor wanted to take my case. This is why I had to go to another country to get medical aid because my file was blocked in my own country. Now that I have the medical proof I can have treatment help here but it took 3 years to clean my medical file because of this incompetent specialist who thought he knew everything.

[bluesky]

Wow, Ernie, you have been through ****. I'm so sorry you had to go through that and I so, so understand how you must have felt. It makes me feel better though to hear your story, it really does. I was told I was depressed for years and in the last year I was told by a new primary doctor that I have fibromyalgia. I think that's the new code label for "you must be nuts, nothing's really wrong with you, get out of my office" (not that I don't think some people suffer terribly with fibromyalgia, they do). I even had that diagnosis ruled out by a rhuematologist but my doctor still mentioned it in his last referral letter to the sneering electrophysiologist I saw yesterday. So, I know exactly how it feels to be labeled and dismissed. So sorry for what you've gone through but, dang, you stuck to your guns and kept going! Good for you, that is so fabulous.

[Ernie]

Hi Bluesky,

I used to put doctors on pedestals and think they had the answer to everything. I had a 180 degree turnaround with my life experience. I learned that when they can't find what you have they give you a garbage can disorder: mostly psychosomatic, or mental disorders. Many of them have a God complex and they can't accept the fact that they don't know everything and they feel compelled to put a diagnosis on every patient (instead of admitting that they don't know what you have). So when we get a diagnosis like Munchaussen it's the kiss of death. No doctor wants you anymore because you have been labelled has someone poisoning yourself to get attention. They are afraid of lawsuit also. You can't even sue them for the false diagnosis because you don't have the proof that you are really sick! You are stuck with no one to help you anymore.

[bluesky]

Ernie, every single word you wrote is the truth.

-Bluesky

[Megan]

I just wanted to add that I was sent to mayo by my psychiatrist for tests on how I metabolize meds (and they did the wrong test for that...) but I had just turned 18 and was in pediatrics, and in the general exam they observed signs they thought were POTS like, so they gave me the TTT and some other tests and determined it was POTS, even though I had originally gone for a psychiatric thing. So, when I went, I didn't have a diagnosis (although my psychiatrist kind of thought I did). Anyway, the story seemed slightly relevant, like maybe there's hope for you to get there.

Meg

[Eillyre]

Hi Bluesky,

Along the doctor line, have you checked the list of dysautonomia physician on the POTS Place website to see if any of them are close to your area? You might be able to get good care from one of them at a lower cost that going to Mayo, or if they think you still need to go to a big hospital for further testing, their input/diagnosis would probably increase the likelihood of your being accepted quickly than a nebuluous reference letter from a random cardioologist.

Another option might be to check with in-state medical schools or hospitals to see if they are conducting any dysautonomia studies. Some studies will use grant money to help participating patients with financial limitations.

You're at a tough stage in the game, but you'll get through it.

Jump's comment regarding being specific about your symptoms' impact on your quality of life is right on target. My cardiologists really didn't understand how serious an issue my symptoms were until they realized just how (and how much) the symptoms disabled me. Try to be as specific as you can about what triggers your symptoms, what makes them worse, and what appears to help reduce them, too. Any specialists you might end up seeing will appreciate that information.

I've found that many appreciate a brief written narrative detailing the progression of your illness. It basically goes over:

1) your ability to function before onset of symptoms

2) when and how the syptoms began to present themselves, to what degree they affected your daily life, if anything made the symptoms worse or better, etc.

3) what medical testing/intervention you tried (if any)

4) how your condition progressed (essentially a continuation of #2)

5) what your situation is now, explicitly detailing your symptoms from most disabling to least disabling, how specifically they have impacted your daily life (e.g. what you can or cannot do), what makes the symptoms better or worse, etc.

That way the doctors (if they have open, inquiring minds) can get a full, detailed picture of your situation. I can still see where Dr. Low (at Mayo) drew circles, arrows, and notes to himself on the copy I sent to him. It was my dad's idea; he's a physician also, and said that he wished more of his patients did that sort of thing because it's much easier to solve a puzzle when all of the pieces are laid out face up and in logical order.

Best of luck in your hunting. Please feel free to PM me if you need to talk, want to ask questions, etc.

Glad you found us!

Angela

[deucykub]

Hi, Bluesky:

Welcome to the forum! I'm sorry to hear that you are in such a difficult and trying stage of your life right now. You are not alone.

Just to clarify on the TTT results for a diagnosis of POTS...

The medical sign that indicates a positive TTT for POTS is an increase of HR greater than 30 beats per minute or to 120 or more beats per minute.

Blood pressure can go up, down, or remain basically the same. You may or may not faint (according to the research, only about 30% of POTS diagnosees faint). I don't faint.

Only if your heart rate changes according to the diagnostic standards is it a positive result for POTS.

I recommend being armed with that information at your TTT because many doctors seem to misinterpret TTT results when the patient either does not faint or does not demonstrate changes in blood pressure.

If you are concerned about a fluke negative TTT, the best bet is to keep your own records by doing a poor-man's tilt test at home daily (it sounds like you are already starting to do this). To give the doctors the best information, take your pulse at rest, then stand and take your pulse, and then take it while standing every minute or two for 10 minutes - or as long as you can stay upright. (If you have a BP cuff, it's good to keep those numbers, too. A drop in BP can be indicative of a different type of dysautonomia)

I hope you start to see some better days soon.

[Maxine]

Welcome to POTSPLACE!

Please check the physicians listing on this website as Eillyre mentioned---- Hopefully you can find one closer to your area, and it will help you get a firm diagnosis, and possibly a referral---- Whatever you do, don't let any doctor try to make you feel bad, or let them try to diagnose some kind of psychological disorder. This is a job for a psychologist, and I have gone to one just to help me through this mess. My psychologist is the one who convinced me to keep trying to get help for my PHYSICAL problem.

Sometimes it's some of the rude and arrogant docs that push us into any psychological problem that may arise-------

The TT Test is not the most conclusive test in the world, but it is used as a standard test to diasnose POTS, NCS ect. I think with POTS our symptoms fluctuate, and on good days we can end up getting a false negative result. I did twice, but was diagnosed with POTS by one of the top specialists in the world. I was lucky because he was located only about a half mile from my house. However, I still had to wait six months before I found him, as I had no idea what I had. I actually found him by accident.

A few of the doctors I saw before him tried to say I had anxiety, and sent me to see a psychologist. Even this psychologist that I saw the first time still thought I had a definate PHYSICAL problem, and thought any depression or anxiety was secondary to my PHYSICAL problems. Finally, one of my bad spells led me to a doctor who took my symptoms seriously. She worked in the ER at the same hospital as the ANS specialist.

That day I had a really bad spell, and went to the ER. The next thing I know a TT was ordered, and I was scheduled to see the ANS specialist a week later. You usually have to wait months to see him, but there must have been some kind of cancellation---I just got lucky. I got diagnosed with POTS based on everything in my file. The pattern was there, as I had all the symptoms----just not conveniently for the TT test.

My HR still went up the 30 bpm, but it took longer, my BP went down, but only 20 points. My last TTT was inconclusive, and my HR went up quicker, but when I was tilted back down my HR did not go down quickly enough--- Now I have BPs that get really low on standing. My lowest reading was 68/39, but typically it runs low 80s/something. I'm on beta blockers for the tachycardia, and I don't have to be standing up to get the tachycardia. I've been on beta blockers for 18 years------even before I crashed with POTS.

You need to have a really good doctor, as other things can cause ANS dysfunction/POTS symptoms. You definately want to rule other any serious health problems also.

Take Care, and good luck in your search for a good doctor.

Maxine :0)