Cleveland Clinic Visit Today...

[Becia]

was fairly positive, even if getting there was a trip and a half for me...

We decided to leave in the morning, so at 4:30, we left the house (we're about 3-1/2 hours away). About halfway there, we ran into some crazy road conditions, where the roads were clear, not icy or snow covered, to about six inches of snow just WHAM! My friend who was driving me was amazing, as he managed to go down the road about 70 while trying to slow and control the car down, and not hit anyone else. It was so weird, but really set the tachycardia going for the day.

We got in about an hour late, and they were awesome to still see us. I had Dr. Browning, and she was pretty thorough compared to what I've been getting from my other doctors, so that was nice. I apparently in their eyes, don't meet the definition of POTS, except for the tachycardia part, but there is obviously some sort of autonomic issue going on. They've arranged another TTT (they tried to get orthostatics on me, but standing I cannot do for longer than 37 seconds or so, and that was a disaster, so we did it lying and sitting with a significant increase in BP and HR), QSART and and a Thermoregulatory Sweat Test (TST). The diagnosis they are using is currently syncope and collapse and sensory disturbance. Also drew about 12 vials of blood for some testing, some which I was familiar with, some which I remember processing in the lab I used to work at for send out, so fairly specialized compared to what I was used to also.

I did get two things I've wanted for a long time: A number for how much sodium I should be taking in, and a number for how many ounces of hydration I should be taking in. I've always asked my doctors for this, because I'm a goal oriented person, and if I can see what I'm supposed to take in, I think I can balance my eating/drinking issues better. Everyone's always said "Just drink drink drink drink... Salt till your hearts content", and I have struggled with this for several months. Somedays I can drink like crazy, but then I don't eat. Salt I'm getting better with, but still need to visually see how much to take in. After arguing with the nurse (she doesn't like me, I'm sure, but oh well...), I have numbers and some better guidelines for everything. She said salt tablets are going to be my best bet, but after being sick from them last time I tried them, I'm just gonna have to measure things, add extra, and go from there. I think I can do it better now that I've got these guidelines.

My blood tests were done today, and next month I have two appointment days for my other tests. In the meantime, I've also sent an application for Vanderbilt in, looks like we are still going forth with PICC line or port to ensure fluid hydration while I still struggle with swallowing (although the bit I ate today, I did pretty good with, so I'm satisfied and not too nauseous at the moment), and I'm just gotta wake up tomorrow and keep trying.

Very interested to see what these tests might show.

[JuneFlower]

Becia,

Thanks for sharing your story. I'm sorry you are having such a struggle. I have heard that there are two salt tablet products that are more tolerable.(coated or something). I hope they figure out why you have trouble swallowing or do you know already? Is your visit at the clinic over then? Just one day? I am taking my daughter to Dr Stewart in NY. I think it will be two appointments but not a huge thing. But I was looking at Cleveland or anywhere with a specialist. So thank you again for letting us know how it went.

(My daughter had a pic line when she was 7 and it was easy so good luck!)

June

[Katybug]

Glad you are finally getting the help you need, Becia.

[corina]

Happy for you Becia! You're on the way to find the answers you need!

[Becia]

June, the swallowing thing if mine I've been fighting for several months... It's like I begin to swallow, and then my throat forgets to finish getting everything down, and I choke. It's really annoying, lol. Right now they are thinking that and some if the stomach issues are refeeding syndrome from last month when I stopped being able to eat and drink right, and then spent a week without food or water because I was so sick with a headache and seizures.

Honestly, if I was ranking the places I originally wanted to see a specialist, I was Toledo only, per my cardio, because he had been able to get people in there, even though there is such a long wait. After a few days in the hospital with a new set if eyes on my case, that's the only reason I thought of Cleveland, and started considering Vanderebilt. Then my ranking changed to Vandy, Cleveland, and then Toledo as a maybe. Given how fast Cleveland got me in, and is doing some testing, rather than just leaving me as I am (which is kinda how my originally doctors have done), im pretty satisfied with the visit. Still hoping to get into Vanderbilt, I think that would still be beneficial for me (and for their data as well), but anything is better than what I've been given before.

What surprised me is she mentioned possibly lowering my Midodrine, which I'm on 10mg three times a day. She stated that possibly that could be giving me the headaches, and since my bp is no longer low, but ranging more way high, it's probably a med I could do away with, if my cardio agrees. I asked her about the double dose of florinef I'm on, and mentioned that the headaches didn't really take off bad until we doubled that, is it possible that maybe that could be lowered, and she just looked at me like I was crazy (which a lot if doctors have done lately, and what the nurse did earlier when I was giving her my history... Some people don't like educated people in their offices, and telling her I already tried stuff and it didn't work made her irritated). All I could think about is the day I was completely without it while we were getting smaller pills in from the pharmacy, and how I wasn't functional at all... So not looking forward to feeling that way, but maybe if it was a gradual thing? We shall see.

[JuneFlower]

That's interesting and sounds hard, Becia. I though referring syndrome was a problem with electrolytes that results in sever edema and can lead to complications. The nutritionist was very worried my daughter would experience this as she was malnourished and was starting to eat again. Luckily she is fine but now sick with a virus and horrible migraine. Poor kid can't get a break.

The nurse should be happy that you already tried some things! I guess they think you need the florinef. Its good you are getting a lot of opinions but sometimes that can muddy the waters and make it hard to choose a treatment. You'll probably have a gut feeling about which dr is on the right track and really listening to you. After all, you are the patient and therefore the expert on your condition.

June

[Becia]

Migraines are the worst, I feel for her.

And I think the nurse wasn't used to someone who was educated in what they've been doing. Like when I told her I had tried salt tablets and they didn't agree with me, she literally just about lost it on me, and I looked at my friend like "I am about to go crazy back on her." Just going on about if I wasn't going to do what they were suggesting, why was i requesting information? The only thing I needed was a number of grams of salt to get in for a day (3-5 grams), and how much water I should be taking in (2 to 2.5 liters a day). It's not that I'm not trying things, I'm wearing compression stockings already, i don't need her to educate me on them. I HAVE THEM ON, lol. I had never been given numbers, just told to drink like crazy and salt like crazy. I'm a goal oriented person, I need to visually work towards something, such as seeing how many cups of water I have left for the day, so maybe I can spread them out better in hopes that it may be effective better.

Honestly, maybe she was just having a bad day, or I'm just a bad patient, who knows. All I know is I know pickles have sodium, I've been eating them. I know the logistics of stockings, I own and wear them (normally only when I go out, I didn't really tell a difference when I'm wearing them around the house. I just want to make sure I'm taking in the correct amount, lol. And I felt the need to tell her that I've been doing the things she's telling me about, I'm just letting her know that this wasn't my first rodeo.

I'm glad I went with Cleveland over Toledo, just because my issues seem to be more neurological than cardiac at this point, and Toledo seems more cardiac focused.

[JuneFlower]

Sounds like she wasn't very understanding. I hate when medical people are obstinate. It doesn't belong in health care. I don't treat anyone like that especially my patients.

Yeah my poor daughter gets every illness due to her malnutrition so she's got a stomach bug that set off a bad migraine. I swear she never goes to school. I'm at the end of my rope.

June

[looneymom]

Hi Becia

It sounds like you had a really good appointment.

Did you get to watch the video on Youtube that Tachy put in a post? It's good and helpful.

Having 2-3 liters of water besides other fluids is good place to start. My son drinks this much but I don't encourage him to go over the 3. If you have too much fluid, you can be flushing vitamins and minerals that your body needs. I keep the regular salt tablets and thermo tabs both on hand. I still monitor his blood pressures daily and this also helps me monitor the salt. When you start adding medications and supplements, this also affects blood pressure.

If you get a chance to read some of Dr. Grubbs research online, he also recommends 2 liters of water a day. Glad your appointment went well. Keep on posting.

Rachel

[gjensen]

Unfortunately, we have to work with what we have to work with sometimes, so be patient with them to.

On the other hand, I know where you are coming from. I have made a few stutter along the way. Maybe they will be better prepared for the next. If some would just stop and listen, and consider that a patient might be able to understand some of what is going on. We have insight that they do not have. And if we thought that we knew what they did, we would not be sitting in front of them.

But, start on the humble side of things. Along the way, you will find opportunities to contribute effectively. A lot of how we say it can matter to. I am trying to learn to be a better patient.

Sounds to me like you are heading in the right direction. It will take some time to sort it all out, and it will take some time to know if this is the right direction for you.

I am happy for you. You have a fighting spirit. Keep plugging at it.

[Lethargic Smiles]

That's nice you had a productive appointment! I can relate to the road conditions causing tachycardia. I can't wait until I can be the one driving long distances again.

Salt tabs hurt my stomach too and I don't think they have enough sodium to justify the pill size. I stick a bouillon cube in a glass of water, nuke it, and drink. I can easily get a gram of sodium this way. It is salty, but it does not hurt my belly and tastes good. Also, just so you know in case you don't already, salt is 40% sodium, so 1 gram of salt is 4000mg of sodium.

[IceLizard]

Hello Becia. Glad you are getting such a complete work up, but sorry for the way the nurse is acting. I have had some really disrespectful nurses. Don't put up with any abuse but otherwise I guess try to be pleasant. Like you said, she might be having a bad day, too. I did not tolerate a doubling of my Florinef and yes, it caused me to have headaches. I am currently on .1 mg once a day and that seems to be my optimum dose. Any more or less and I feel worse.

Keep fighting and I hope you get some answers soon!

Hollin

[lulusoccer]

When I was at Vanderbilt they told me to take in 8-10 grams of salt per day. They were actually against the idea of salt tablets unless you couldn't get it in your diet. They said what they tell their patients is to take 3 tsps of salt and put it in a plastic baggy daily and take it with you and sprinkle it throughout your food during the day. Each tsp is equal to about 2,300 mg of sodium so that is an additional 6,900 grams and since you will have sodium in your diet already that is an easy way to get the 8-10 grams a day!