So frustrated and almost hopeless, considering trying Mayo Clinic

[CaptainHappy]

Hi everyone,

This is my first time actually posting here, but I've been lurking around and reading others' posts for a while. I'm having a really rough time right now, and this seems like such a supportive community, so I'm glad to have found it! I'm hoping others might have some helpful suggestions.

I was diagnosed with POTS and IST in 2013 after 5 years of being told I was crazy (just in slightly nicer words). My resting heart rate was in the 130s, jumping up by 30-40 if I so much as stood up. I was referred to two different psychiatrists, both of whom turned around and sent me to cardiologists. Finally, after passing out in the middle of a college class and being hospitalized, I was started on verapamil to decrease my HR. When that didn't work, my cardiologist added nadolol. That finally brought my resting heart rate under 100 for the first time in years. I was on that combo for about three years, until I started having episodes where my HR would drop into the 40s or 50s. I'd get this weird, heavy feeling in my chest when it would start dropping. I mentioned it to my PCP, and he had me stop taking the nadolol in case that was the problem. I woke up the next day with a HR of 160. The doctor switched me to half the dose of nadolol, and it decreased the frequency of the attacks, but they still happen. The worst was a couple months ago, when my HR stayed between 40 and 55 for about 5 hours. I couldn't get up off the couch.

My resting HR has been creeping back up over 100 in the last month or so, and I went back to the cardiologist last Thursday. He took me off the nadolol again, but this time added midodrine because my systolic BP has consistently been under 100. As soon as I made the switch, I started feeling miserable. My HR was in the 140s-150s constantly, and there was no increase in my BP. I called the cardiologist back, and he increased the dosage of both verapamil and nadolol. Today I had a regular follow-up with my PCP, and my HR was 155. It went down to about 115 after lying on the exam table for about an hour, but that's as low as it got. PCP called the cardiologist's office... then came back with a prescription for Xanax. Considering I went through five years of hearing "it's just anxiety," I was not happy. After I explained that these symptoms didn't get worse until I was taken off the nadolol, the doctor thankfully called the cardiologist again. He came back and told me I was to restart the nadolol, but I should still give the Xanax a try, "just in case." I went home without filling the Xanax script and took the nadolol. And what do you know -- two hours later, my HR is down from 125 to 89. 

After dealing with this so long and finally thinking I had a doctor who believed me, getting the anxiety spiel once again really pissed me off. I've been thinking for a while about trying to get an appointment with the Mayo Clinic, and I went ahead and filled out the online request when I got home this afternoon. I got a phone call within an hour. The lady I spoke with sent me the questionnaire to fill out, but I haven't done it just yet. I've read (not just here, but other sites as well) about people having both very good and very bad experiences with Mayo, and I'm concerned I'll end up having one of the bad experiences. But I'm kind of at the end of my rope here.

The thing that's really getting to me is that POTS and IST are just two in a long list of health issues I've been dealing with for seemingly forever. Since 2012, I've also been diagnosed with fibromyalgia, IBS, Floppy Eyelid Syndrome, and severe Dry Eye Syndrome. I had surgery for the FES in 2014 and pending a consult with another oculoplastic surgeon at the end of this month, I'll probably be having another surgery. I was told I'd get 5-7 years out of the first one, and it's been 3. The dry eye syndrome has led to corneal scarring and vision loss. After a serious flare-up earlier this year, I had an amniotic membrane graft in my left eye. That helped, but I still can't see worth a crap unless I'm wearing contact lenses. I have to have something physically on top of my cornea to be able to see. I basically don't produce any tears, and no one can tell me why. I had punctal plugs inserted that fell out within hours, so I had my lower puncta cauterized (didn't help). I have constant tingling and shooting pains in my hands and feet, lower back pain that never goes away, and joints that decide they don't want to stay where they belong at the slightest provocation. I can't walk up a flight of stairs without feeling like my body is just going to shut down. I have heartburn so painful that if I didn't know better, I'd think I was having a heart attack. I have a very hard time believing these things aren't all connected in some way, but so far I've just been shuttled from one specialist to the next like it's not all part of the same body.

I'm sorry, I guess this kind of turned into a rant. But I appreciate if anyone's read this far!

So I guess my point was, has anyone with the same sorts of issues gone to Mayo, and what kind of experience did you have? I am pretty much willing to try anything at this point, but I'm really worried it will end up being yet another (ridiculously expensive) dead end.

[Guest KiminOrlando]

Hi Captain. 

Welcome. You are in the right place to vent. I think your profile said you were in Georgia, so should I assume you are looking at Mayo in Jacksonville? I went there about 10 years ago. I think others have gone more recently. Were you looking to make an appointment with cardiology or neurology? Or were you going to try under another specialty?

I went, but I went under Rheumatology, but they were not helpful. The neuro I saw was Dr. William Cheshire. He diagnosed me, but wasn't the physician in charge of my case. I think he is still there. Others on this site have seen him more recently and I will leave it to them to speak up if they think they can add to the conversation. I also was referred out to an endocrinologist and a gastro all at Mayo. The specialist you start with is key. They act as your PCP and control everything. 

Have you been to Vanderbilt? Have you been checked for autoimmune diseases? Your comment about your joints not wanting to stay put makes me wonder if they should look at EDS.

I don't know what to tell you to do. You may get lucky. You may not. If you do nothing, you will be stuck exactly where you are or possibly get worse. If you have insurance, maybe make appointments the first of January so you can cram everything in one year once the huge deductible is met. It might give you time to get in to Vandy or Cleveland Clinic in the same calendar year if you wanted another big name opinion. 

I go to Medical University of South Carolina in Charleston and just found out they are starting a Dysautonomia Clinic. If you decide you want to start there, I will be happy to give you that number. 

Sorry I couldn't be more help. I think frustration is just part of the process. 

Kim

[CaptainHappy]

Thanks for responding.

I've done a lot of looking around online about which Mayo location to go to and kept seeing good things about Rochester, so that's where I was planning to go. I would be willing to go anywhere, really. It doesn't make much of a difference because it will be an expensive trip no matter where I go. Do you think it would make a difference going to Jacksonville vs Rochester, or would that just depend on the doctor either way?

The lady I talked to earlier today said that if I got an appointment, I would be scheduled with several different specialties. So I'm assuming cardiology and/or neurology would be among them. I really have no idea what I'm doing here. I just got so irritated with the same old "anxiety" bs today that I had to do something, so I filled out the Mayo appointment request form when I got home.

I have heard of the Vanderbilt clinic, but I haven't been there. My old cardiologist mentioned sending me there, but around that time is when I lost my insurance for a while. That doctor was with Kaiser, so unfortunately I can't see him anymore. 

I have had an autoimmune workup done several times, but nothing has ever shown up. EDS has been mentioned by a few people and, from what I've read, it seems to explain everything that's going on with me. But I don't feel like I can ask any of my doctors about it without being blown off. 

Hopefully I'll figure something out, I guess I just need to keep researching my options. Thanks again.

 

 

[Guest KiminOrlando]

Hi Captain. 

I have heard Rochester is the better choice when it comes to Mayo locations. I guess the original is still the best. It wouldn't be a bad option at all.

I went to Vandy and had good luck with Dr. David Robertson. I know he does research and lectures. I don't know if he still sees patients, but their Autonomic Research Clinic is top notch. Many of their physicians are well known in this area and publish. 

Maybe some of the people who went to Mayo Rochester can jump in here and let you know their experience. 

Good luck and keep us posted as to what you decide and how it goes.

Kim

[Don]

I saw Dr. Cheshire recently for my autonomic neuropathy.  He is one of the neurologists on staff at Mayo in Jacksonville.  He was pretty thorough and made note of everything I said and didn't write me off as anxiety (even though I have Bipolar Disorder).  My case is extremely complex.  I have a LONG list of symptoms.  He referred me to urology and GI (I am incontinent).  I have also seen pulmonary and cardiology who helped to confirm his suspicions.  I went to their autonomic function lab for TTT, Valsalva, and QSART.  Cardiology did an ANSAR test.  I'm due to see GI in about a week for my digestive issues.  Overall, my experience has been pretty good.  

[Guest KiminOrlando]

I think if you went to Mayo in Jacksonville and Dr. William Cheshire was in charge of your case, you would have a very good experience. He is well known with other dysautonomia doctors and is published. 

@Don I'm glad you responded. You were the one I was thinking of, but I didn't want to put you on the spot. 

Kim

[Don]

No problem Kim.  Hope I was of some assistance.  

[Clb75]

I went to Vandy and had a great experience. I'm not sure where in GA you are, but it's about a 3 1/2 -4 hour drive to Nashville from Atlanta. The only thing is that they don't schedule you with different specialists while there like they would at Mayo. Given all the different things you have going on, I wonder if Mayo might be a better fit. I don't know much about EDS but a lot of your symptoms sound like what people with EDS describe. POTS is very common with EDS. Also, just another thought, have you looked into Sjögren's syndrome when you were tested for autoimmune diseases? The lack of tears/dry eyes made me think of that. 

I know it's frustrating at the beginning when you know something is wrong but you're not getting answers. Something I've learned from being sick is that you really have to advocate for yourself and keep pushing for answers. Hang in there, and hopefully you'll find some answers soon!

[HangingByAThread]

I also went to Vanderbilt and had a great experience.  However, unlike Clb75, I was able to be seen by different specialists during my visit.  I spent one day there and had autonomic testing, then saw a neurologist, followed by a dysautonomia specialist.  You need to tell them you are traveling and would like to see as many specialists as possible during your visit.  As for Mayo, I can't give an opinion because, although my electrophysiologist reached out to them for an appointment for me, they refused to see me (refused to wait list me either - said they had too many patients).  Five months prior to Vanderbilt, I was seen in Cleveland (3 days of testing).  They were also top-notch.

I was also thinking about Sjogren's since you mentioned the dry eyes.  I have just been to the Sjogren's Center at Johns Hopkins myself and am awaiting the results.  While I was there the doctor mentioned that he sees so many people with dry eyes but a lot of them just turn out to be caused by the dysautonomia itself.

Captain, so sorry you are so frustrated.  I hope you find someone who will listen and can help you very soon!  Please know you are not alone.

[Nan]

Hello! 

I went to Mayo in MN last year. This was right after I got sick. I was hospitalized in May and went in September after exhausting all doctors in my area. So I didn't have all my symptoms yet and I didn't have my POTS symptoms.  I was there for three weeks seeing multiple specialists and was eventually put in the category of Central Sensitization Syndrome and was place in a class on how to learn to manage the symptoms I had. When I ask the neuro there if I had dysautonomia I was told no, when I asked the clinic that I went to for the class they said it was a possibility. The way Mayo helped me was one it told all my doctors at home I have a diagnosed illness and it helped me retain me long term disability through work.  Other than that, I didn't find it very helpful and felt like I was chasing my tail. 

[CaptainHappy]

Hi everybody, thanks for all the responses! I have had a lot going on the last couple of weeks, so I haven't been back until now to check the replies. I appreciate everyone's input.

I'm still looking into all the options and trying to figure out where to go from here. I saw my cardiologist again today, which just reinforced the thought that I need a new doctor. I was sitting there miserable in his office with my BP still 90/60 despite the midodrine, and he tells me to just keep taking all my meds and come back in six months. Thanks. 

For those who asked, I've been tested several times for Sjogren's (and about a million other things) and the results have always been negative. I'm pretty sure at this point that it's just the dysautonomia, since nobody can come up with any other cause.

Living with this is extremely frustrating, but it's awesome to finally connect with other people who really get it. Even though I have the most understanding and supportive husband I could ever have asked for (seriously, I don't know why he puts up with me!), there's no way he could ever really understand what I go through on a daily basis. It's nice to know I'm not the only one.

Anyway, I've been looking into both Vanderbilt and Cleveland in addition to Mayo. I still haven't filled out the Mayo questionnaire, mostly because I've read about some negative experiences while trying to do some research. I just don't want to end up right back where I started, and a few thousand dollars poorer. But I guess that could happen no matter where I end up going.

If anyone has any more input, I'd love to hear it. Thanks to everyone who's responded so far!

[looneymom]

I have heard really good things about Dr. Goodman at the MAYO Clinic in Arizona. He only sees adults but will see very complex teen cases. I just had a friend report back on her visit. 

She had to fly out and see him. She was there for a week because of all the testing done. Hope you find answers soon. Your case does sound complex and you really need a doctor to help get you on the right treatment plan.

[firewatcher]

I am also from Georgia and was diagnosed with POTS 10 years ago at Vanderbilt. I saw Dr. Biaggioni and he was excellent; I have seen him several other times for follow up and he was still excellent. As for cardiologist in GA....let me know if you find one. This is not a good state to live in if you have "unusual" conditions regardless of the firmness of your diagnosis. Whether you go to Mayo or Vanderbilt, you will need some type of doctor for prescriptions and monitoring, not necessarily a cardiologist, any (MD)doctor who is willing to be your advocate will do as long as you trust one another.

[firewatcher]

Just a note on "Anxiety" meds: they treat more than anxiety. I had a very good response to Clonazepam (Klonopin) for many years. These meds seem to blunt the overreaction of the central nervous system. The issue is really "the label." Many doctors see an anxiety med and will assume that you have anxiety, many nurses will do the same and all this gets in the way of proper diagnosis of the actual medical condition.

But that does not mean it is an inappropriate treatment! just an inaccurate label.

IF you trust your prescribing doctor, AND you have a good response to it, take it and be honest with your doctor about what it does for you.

Full disclosure on my part, I no longer take Clonazepam, because I lost the GP I trusted and the new one got onto the "anxiety" bandwagon. It helped and many times I wish I still had it, but until I get a doctor I trust, I will deal with my symptoms...sigh

[CaptainHappy]

On 8/25/2017 at 9:52 AM, firewatcher said:

Just a note on "Anxiety" meds: they treat more than anxiety. I had a very good response to Clonazepam (Klonopin) for many years. These meds seem to blunt the overreaction of the central nervous system. The issue is really "the label." Many doctors see an anxiety med and will assume that you have anxiety, many nurses will do the same and all this gets in the way of proper diagnosis of the actual medical condition.

But that does not mean it is an inappropriate treatment! just an inaccurate label.

IF you trust your prescribing doctor, AND you have a good response to it, take it and be honest with your doctor about what it does for you.

Full disclosure on my part, I no longer take Clonazepam, because I lost the GP I trusted and the new one got onto the "anxiety" bandwagon. It helped and many times I wish I still had it, but until I get a doctor I trust, I will deal with my symptoms...sigh

Thanks for your response. I would definitely have tried the anxiety meds if I thought there was any chance they would help. But unfortunately, I don't trust this doctor's intentions anymore. Especially not after I started back on the nadolol and these "anxiety" symptoms went away.  I also found out from my cardiologist that the ECG that my PCP performed during that episode showed several PVCs, and he didn't bother to mention it. That really irritates me, because I told him several times that at least once a day I felt my heart "skipping" beats. I know PVCs aren't dangerous (unless you're having a ridiculous number of them). But to know there was actually something going on and I wasn't just imagining it, but the doctor didn't bother to say so... it just really makes me angry. So I'm now going to be looking for a new PCP as well.

There was a wonderful electrophysiologist I saw when I was first diagnosed. However, he's with Kaiser Permanente and I'm not anymore. So I can't go back to him, and I have had absolutely no luck with any other cardiologists around here. I've kind of given up on looking in Georgia.

 

[SammyJo]

I am currently at MAYO Jacksonville, and unfortunately no one can get an appointment for Dr. Cheshire until December even though I came here for a cardio consult they still couldn't manage to slide me in. Make sure if you come that you research the cardiologists to see who has expertise in dysautonomia.

[Guest KiminOrlando]

Sorry SammyJo. I was hoping you would get lucky.

Maybe you still will with the new Cardiologist. Maybe they will have some autonomic testing done and you can come back to see Dr. Cheshire armed with the data he needs to give you a solid diagnosis. Maybe the cardio will have started you on the first level of meds so you will have something to report back to Dr. Cheshire.

Are you thinking of coming back to Mayo for follow up or hanging it up? 

I'm so sorry. I guess Dr. Cheshire isn't just our little secret.

Kim

[corina]

Though I fully understand your hesitance re anxiety meds, I'd like to let you know they are on our "what helps"-list, here's a link for you to check out:

Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution.

I've been on them for years now and though I tried to get off several times, my body just can't do without them. They are my nr 1 med to keep hr in control. Good luck on your journey

[SammyJo]

Kim,

I will probably come back to MAYO once I have an appt with Dr. Cheshire. I am doing my own follow ups at home as well as continue to do my own digging. Received a message from the allergist I saw there that my tryptase levels were high ( I asked him to do this test), which is an indication of MCAS. He wants me to get the test re done just in case it's a false positive as well as a 24hr urine sample.

[CaptainHappy]

On 8/30/2017 at 6:19 AM, corina said:

Though I fully understand your hesitance re anxiety meds, I'd like to let you know they are on our "what helps"-list, here's a link for you to check out:

Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution.

I've been on them for years now and though I tried to get off several times, my body just can't do without them. They are my nr 1 med to keep hr in control. Good luck on your journey

Thanks for the info. My problem was not with the meds, but with the doctor's attitude. He wasn't trying to help my dysautonomia symptoms; rather, he was telling me that the SVT episode I was having due to being abruptly taken off nadolol was "all in my head." 

[CaptainHappy]

So I have an update! Somewhat good, in a way. I managed to find a new PCP who has been wonderful so far! I have to drive 45 minutes to see him but, considering my past awful experiences with doctors, I'd say it's totally worth it. I told him all about what's been going on and my increasing suspicion that I have EDS. He didn't really know anything about EDS, but asked me to explain it to him instead of just saying "oh, you can't have that." That is like a miracle to me!! He decided to refer me to a rheumatologist, who I saw this morning. She was fabulous. I was so pleasantly surprised! She actually listened to what I had to say, did a very thorough exam, asked lots of questions, and made it absolutely clear that she believes I am in pain and it is not "all in my head." I seriously wanted to cry. I'm sure many (if not all) of you know the frustration of not being believed by doctors. 

So after that consult, the diagnosis is hypermobility EDS. I was pretty sure it would be. I didn't realize what a relief it would be to get that official diagnosis. It sounds ridiculous but, after nearly a decade of trying to find an answer, I finally know what is actually wrong with me. At the same time, it's disheartening to know for sure it will never go away. 

The rheumatologist decided to do a trial of two new medications for the pain, duloxetine and gabapentin, and wean me off of the amitriptyline I've been on for the last 5 years. I'm a little bit worried about the duloxetine after researching and seeing some horror stories about side effects. Has anyone had experiences with either of those meds?

[Guest KiminOrlando]

It doesn't sound ridiculous. It sounds like you are finally on the right track. Congratulations. 

 

Kim

[Don]

SammyJo,

Did you ever get in with Mayo?  I saw Dr. Cheshire in June.  I had my appointment scheduled back in mid-March.  I had to wait around 3 months to get in with Dr. Cheshire.  I had my neuro battery of tests that day with labs.  Due to co-morbid conditions I had to come back and see other specialists later on.  I'm actually having a follow-up appointment with GI next week.  It all started with Dr. Cheshire.  

[CaptainHappy]

21 hours ago, KiminOrlando said:

It doesn't sound ridiculous. It sounds like you are finally on the right track. Congratulations. 

 

Kim

Thank you, I appreciate that.

[firewatcher]

I have an appointment with a new POTS doctor in mid-October.  Hopefully I will also be on the mend...after hernia surgery...sigh. Congratulations, though; a diagnosis is so often a vindication. YOU know what you are dealing with, but now that it has "a name" it can be treated seriously!