I Need Some Feedback/support -- Going To Mayo In Two Weeks And Hope I Can Get There

[lynnie22]

Sometimes the support I get from this group keeps me sane. So thank you all.

My health and symptoms have taken a turn down in the last few months and so I am returning to Mayo after three years. I am scared I won't be able to handle the trip there (hardly able to function), won't be able to do the tests that they have ordered for 7 AM everyday (I'm one of those up all night people, very hard to get out of bed in AM), am totally in the dark about what they're going to do otherwise because it's being handled through a cardiologist there (two tests ordered so far) and have these debilitating symptoms lately where I shake all day, and can hardly stand for long. If the doctor here hadn't told me he can't help me, I wouldn't even attempt it, but I'm desperate.

I have two torn rotator cuffs and cannot carry bags at all. So that is an additional conundrum about managing.

I was fine until about a year ago when things started getting very out of control and now EVERYTHING affects my blood pressure and heart rate. I take a different amount of beta blocker everyday, decided by me -- hate that -- and I know it's not good for me -- but haven't yet been given a treatment plan here for that because my autonomic functions vary so much. Does anyone else have any suggestions for evening out wide ranges in blood pressure? I posted before on this once and thought I'd ask again.

But mainly I'm really concerned about getting to Mayo and getting through Mayo and HOPE they schedule the right tests to help me. I won't be seeing a neurologist (first time) until Wednesday. Monday and Tuesday are set up for me to see cardiologist and have two tests including the sweat test, never had, early. They never looked into WHY I have POTS, or what kind I have, which seem important right now.

Anyway, am anxious about all of this.

[Katybug]

Lynnie,

I just had a trip to my dad's in FL. I was really worried that I would stress my body with getting up early for the flight, the airport shuffle, flying, etc. I decided ahead of time that I would check in my bag even though it was a carry on size and only take my purse with me on the plane. I also asked the skycap for wheelchair assistance. It turned out great. The wheelchair assistance was exactly what I should have done and recommend it to anyone who struggles even a little. The people who assisted me were great. They will stop at the restrooms, help you get food or drink, assist you through security. Then they board you first and wheel you down the gangplank to the door of the plane. I'm not a very self-conscious person but I never felt like I was being stared at. If you check in as needing wheelchair assistance, they also meet you at your destination with a chair at the plane door and help you at baggage claim, etc. I was amazed to find myself NOT exhausted when I arrived in FL! I also made sure to wear my compression stockings which helped too.

I know it's hard to push through the early morning tests (I'm an up all night girl too) but I know your persistent spirit will get you there each day so you can get the answers you're looking for! I'm pulling for you!

[Lethargic Smiles]

I went to Mayo in Minnesota in August 2012. I wrote about each day and all of the various tests, including the sweat test. At the time I went, I was only a month out from being the most ill I have ever been. I'd been hospitalized for a week and in and out of the ER several times for severe dehydration. Despite the early tests, I felt a sense of mental relief while I was there because I knew I was doing something to help myself. I don't know if you're like me, but if you are, reading about what is going to happen helps, so here is a link to that part of my blog: http://lethargicsmiles.wordpress.com/coping-with-illness/mayo-clinic-experience/ Also, it'll give you an idea of the different autonomic tests available.

That's frustrating this trip is such a big deal to you. I found my Mayo autonomic neurologist takes quite some time to return my phone calls. Sometimes it take a few weeks and I will call to check in and see if he got my message, then he calls me that evening or the next day. To his credit, despite not seeing me in a year, he still will spend quite awhile on the phone with me answering all my questions. He's done this 3 separate times. I always offer for him to bill me for the time and he says he doesn't know any doctors who would do that. I wanted to say, "You don't know any good, caring doctors that would do that!"

It's so much easier said than done, but my advice would be to try and not let the stress of going there consume you and make you feel even worse. Think about the things you can control, and plan those things, and push things you cannot control out of your mind and know you're an experienced POTSie who will know how to deal with issues as they arise. Generally, when we keep going over and over the same possibilities in our head, it really stresses the system as our brain thinks something is actually happening that it needs to be up in arms about. I think you will be happy you went and feel empowered with the information you gain from this. You're a really strong person for continuing to search for answers!

How are you traveling to get there -- it sounds like airplane? If you are traveling by airplane and could use some tips, just let me know. I've traveled to Dallas and back twice this year. It's not ever easy, but I feel I've sort of mastered it. Is someone going with you?

[lynnie22]

Hi. Katy, that's a really good suggestion about the wheelchair -- I totally didn't think of it. I'm going to try to carry my bag, however, not carry perse, maybe the wheelchair attendant can also wheel the bag? --the standing at the baggage claim is really hard for me. Good to hear from a up all night comrade.

I will check out your blog, Jackie. Thanks! I did keep up with it when you went to Dallas. How is that working? I will definitely read about the sweat test. I can't imagine not passing out with low bp at that hour and no fluids.

I did call the main doctor's assistant today. It sounds like he's been quite busy. I'm a big worrier. Obviously. Wasn't always. I'm waiting to get over a bug I've had to have the flu shot before I go....will be on the way to the plane, it looks like. I also made the mistake of booking an expensive hotel, and right now, I don't have the money.

Where do people stay that's affordable and close to the clinic?

I am going by myself, which makes it harder.

[Katybug]

The wheelchair attendant will help you with your bag. The flight attendants will then help you with it at the plane. Keep in mind that the skycap at the curbside drop off can check your bag for you instead of standing inside at the checkin desk if you do decide you need to check it and the wheelchair attendant will help you retrieve your bag at baggage claim on the other end. Either way, they will help you. Will be thinking of you.

[MommaBear]

We just went to Mayo in May and saw Dr. Fischer in the adolsescent clinic for my daughter who is 17. She was diagnosed a year earlier with POTS and had just gone through a really rough couple of months, as well as a permanent migraine that started at the same time. I asked Dr. Fischer about the sub-type POTS and testing for that, and he said that while some of his colleagues are in favor of it, he felt it didn't make a difference as the road to recovery is the same. He said he may feel differently in a couple of years if more research is done, but at this point that is how he feels. Lots of tests were done, and no reason for the POTS was found, other than it started with a virus, but that can't actually be proven with any tests, you are just telling them how you got sick one day, and never got better. But it is always discouraging to spend a lot of time and money and all of your tests come up with "normal", when clearly you are anything but. BTW, Dr. Fischer is just as delightful in person as he is on his YouTube videos, and overall the staff were super encouraging.

We stayed at the Holiday Inn, which is a further walk than say DoubleTree, but still within the tunnel system, which at this time you will want, since it will be cold, and if you are like my daughter, you respond to cold negatively. All the Mayo hotels were a little pricey IMO. You can find some $99 deals. Or does anyone you know have miles they could donate for free nights?

Interestingly, I read the book by Dr. David S. Bell, Cellular Hypoxia and Neuro-Immune Fatigue and I believe that there is a lot of information in that book that explains what is going on, but of course, there are no testing for that. However, Dr. Bell believes with research, there can be in the future.

Hopefully, you are staying some place as close to the clinic as possible so it is a short distance for you to travel to your appts. Everyone at Mayo is super nice, and the minute we looked slightly confused as to where we were going, someone stopped and asked us if they could help. One time I saw the badge of someone who stopped and asked and he was one of the VP's of Mayo. You will never find yourself stuck, as even in the tunnel/corridors, people make sure you are OK if you even look like you aren't doing well. I was amazed at the service attitude throughout the Mayo system.

Good luck and hope that you find some answers and help. No meds have helped my daughter, and she is currently having a weird relapse, with new symptoms, but she has had the shaking all day long. Exercise, regardless of the pain, is the only thing she has found that helps, and patience. But she is still not well, so not sure what the cure is! Take care and hope it is a great experience for you.

[Lethargic Smiles]

At most US airports, you get to bypass the security lines if you're in a wheelchair. I couldn't believe it! It made me think of Disney World and how people with disabilities were being paid to pretend to be people's friend's family so they got to bypass lines. They're totally missing out on the this corner of the market!

At Chicago Midway, they have a whole special section they direct you to where you aren't rushed or anything. They direct me to this area when was flying at a busy time, but on a less busy day, they let me bypass the line and directed me to the "normal" security area. It was so nice! At Dallas Love Field, I just got to bypass the line. At Dallas, when I got off of the plane, the wheelchair pushing boy said there is an airport policy that he can't pull a suitcase while pushing at the same time. Both hands need to be on the handles of the wheelchair. If needed, he was going to have an additional "helper" come along to pull the suitcase, but luckily I had my Mom with me who could handle it and I put a duffel bag we had on my lap. Also, a family member or friend who is not flying can accompany you to the gate if you're using a wheelchair. At the area you check your bags, they'll give the person a pass after checking their ID.

[lynnie22]

I'm sorry about your daughter, MommaBear. I hope she begins to get better. What road to recovery did Dr. Fischer mean? I don't know about the Dr. Bell book but it sounds interesting. I imagine, at least my opinion, that cause can be important, if it comes up at least. It is frustrating when everything is 'normal' and it isn't that at all. Are they doing anything for her migraines? I imagine that even a viral cause can suggest immunity building. A lot of people on this site are doing many alternative healing and vitamin or diet approaches that seem to help. Not me as yet.

Anyway, I was at Mayo three years ago and it sure is cold. I booked at the Doubletree because of its closeness but boy is it expensive! It is probably too late to find anything else but I was worried about the money. Don't have it, once I thought about it.

I have some points, but I don't think enough for my hotel. Using it for the plane though.

Jackie, it sounds like you've had quite a lot of experience at the airports! I'm definitely going for the wheelchair.

[Lethargic Smiles]

Good call Lynnie, I don't think you'll regret it. I was asked often, "Could I help you?" by airport employees just because I was in a wheelchair. Sometimes in stores, this gets on my nerves, but at the airport, it was more than than welcome! Are you traveling alone?