Confused And Discouraged

[bebe127]

Hey all, hope you are all well.

I'm feeling a bit confused and discouraged as of late; I know, aren't we all? I apologize in advance for the length of this rant/pity party.

A bit of background: I am a 43 yo wife and mother of two teenagers that I homeschool. Was dx. in 2009 with "what is probably POTS" by an EP after my first an only ER/Hospital visit. The dx. dr. never treated me and in fact told me that POTS is rare and not many dr.s treated it and he didn't know of any. Over the last almost four years I've been dealing with a myriad of symptoms and have seen many dr.s to no avail. My current GP has me on Metoprolol and Xanax and in fact, he treats about 5 other patients with POTS. His knowledge in the field doesn't seem all that tremendous and he explains to me that all of us are different and I get that. The meds seem to do as they are intended most of the time, but I still suffer from many other symptoms. I guess I'm just sick and tired of being sick and tired with no end in sight. In the course of seeing dr.s and seeking some sort of relief, no dr. has ever suggested what type of POTS I have, where it came from, when it started, or if I'll ever be rid of it. I suppose I should be quite thankful that I don't have syncope, blood pooling, low blood volume (that I know of) and some other things that so many suffer from.

I'm confused and discouraged because I've been doing bunches of research, especially on MCAS and Lupus and it is all really scary to me. I just don't know where to turn. I know many go out of town to dr.s, but I am unable to do that presently.

I've recently designed a worksheet of sorts to keep track of my daily goings on ie: Vitals, meds, symptoms, stressors, activities, food/drink in the hopes that if I ever make it to a dr. that they will somehow be able to put 2 and 2 together to come up with a better protocol for treatment. Weird thing that I've found is that my blood pressure and heart rate are all over the place. This morning my bp/hr was 95/77 110, Sun. morning it was 98/78 97,but last Thurs. it was 132/94 86. Does this seem all over the board to any of you as it does to me, or am I just being over anxious and crazy? Plus, it doesn't really matter what my vitals seem to be, I feel like crap no matter what. The common protocol for POTS it seems is to eat more salt and drink more water. Well, on the days my bp seems low, that might be fine, but what about the days when my bp is on the high side?? Am I drinking too much water and possible diluting essentials? I do drink a cup of coffee in the am, gatorade, propel and water throughout the day, and in the evenings, I try to relax with a beer or two.

I don't eat all that well as I'm nauseous and have little appetite anyway. Could my decrease in appetite be due to meds or maybe because I drink so much? Do any of you drink boost or ensure or anything to get nutrients that you normally don't get from food? I've really started to look at what I eat and it's astounding the amount of nutrients I must be deficient in although no dr. has ever stated that I'm deficient or even tested me that I know of for that matter. My husband has had to take over the cooking, bless his heart, he cooks meals over the weekend so that all I have to do is take them out and pop them in the oven. The problem is, not that I am not totally grateful for my gracious hubby, but most of the foods that he makes are casserole/one dish meals which happen to be really yummy (when I feel like eating), but not necessarily the healthiest of choices. I'm thinking of getting a NutriBullet so that I might be able to do smoothies with fruits and veg in them because I know I can go a whole week and think...my goodness, I haven't even eaten one friut or veg this whole time! Anyone have experience with the NutriBullet?

I just don't know what to do or where to turn. I know I should see a dr. but don't know which one and can't really go out of town to a dr. Even if I go to a dr. I really don't even know what to tell them or what questions to ask without feeling like they are going to look at me like I need a padded cell.

I guess that's all I have to say for now...

I do hope you all are have good, symptom free days Thanks for listening/reading.

[looneymom]

Hi Babe,

With my sons health condition, I really started getting picky about good nutrition. I bought a nutribullet back in Feburary and I fix green drinks every day for my son and I My son also drinks protein shakes everyday. They really helps with his fatigue issues. He would not make it through the day without them. The shake is called Amplified Wheybolic Extreme 60 and I buy it at GNC. This shake comes in different flavors. GNC has a sale the first nine days of the month and thats when I buy this product. I really do think good nutrition and exercise can help POTS patients get better. Before my son got the flu in January, he was able to walk around and do a lot more exercise. He was smiling, laughing, and able to function better than he is right now. The flu just wiped him out and he is basically having to start all over again.

The other post about "What has helped me get 90% better" , think it was written last of Feburary or first of March has also influenced me about nutrition. I have started using coconut oil and coconut milk in our family's diet. The first change that I have noticed is that my son's blood pressues are becoming more stable. My son used to wake up in the morning with the top number always below 95, in the last two weeks the top number has been over 105 or more. There is lots of information about coconut oil on the web. As far as liquids are concerned, my son drinks 2-3 liters of water or gatoraide. He usually drinks gatoraide with lunch and supper. He drinks two shakes a day. However, if he goes over the 3 liters of water/gatoraide, he is in the bathroom quit a bit.

It's hard to find a good doctor thats understanding and knows something about POTS. I just happened to find a cardiologist that knows something about POTS and he is wonderful to work with by phone. Have you looked at the physicians list on Dinet? Good doctors are hard to find. Really don't know what type of doctor to recommend, but maybe someone else on the forum can give you some ideals. Take care.

[Joann]

Bebe,

Sorry to hear you are feeling down. You have helped me so much when I have been struggling to be positive. I understand not being able to find a doctor to help you. I am still trying to find one too. As to going other places. I am going to Cleveland only because my dad is helping me and going with me, plus it is only about 4 hours away. I won't be able to continually do this, but since I have to pay a big deductible before insurance, I will try and do as much as I can this year, since I am already over the deductible. I couldn't do this every year.

Maybe if you can't go to them right now, you could try and email or call the offices and see if they will suggest doctors in your area? It sometimes seems like the squeaky wheel is the one that gets noticed. You know nice guys (gals ) finish last. Often I feel I am too nice and accepting and they walk all over me. If you call and nicely but firmly ask for help, maybe they will? Can't hurt, right?

I totally get the feeling of being scared and being depressed and frustrated. As I said earlier, you helped me a bunch recently when I was going through this. All I can say is keep hanging in there and know you can pm me anytime.

I think we all relate to these feelings. And as you told me recently (nothing like throwing your words back at you) remember what you are accomplishing. You are doing a bunch with your family, even when you are feeling awful.

Hang in there, we will get answers!

[bebe127]

Thanks looneymom!

First I must commend you on the support and care that you give to your son! Of course, being a mother myself, there is nothing I wouldn't do for my children. It's hard enough having to deal with this cranky illness as an adult, but to go through it as a child must be a tremendous challenge. You and your son seem to have risen to the occasion. May you both be well

I am seriously considering the NutriBullet, not only for me, but for my children as well. Since I don't eat well, unfortunately, my children (teenagers) are left quite on their own and aren't getting what they need as well. I'm excited!! BTW, my hubs is a "gold member" at GNC. He's a buff dude that works out religiously (I wish I had his motivation!). I'll have him check into the protien shakes stuff.

It's just so hard sometimes when I don't feel like eating, much less making anything. I wish I could just hire a nutritionist and chef and let them take care of it for me!!

Thanks so much for the info

Be blessed,

Bebe

[bebe127]

Thanks Joann!!

I appreciate your kind words, and you're right, I do need to focus on the positive

Actually, we have a Cleveland Clinic in the next county up (only an hour or so away), but from what I've heard around my area, they haven't been much help. Still might be an option though that I can talk to my dr. about. I'm kinda like you in that I'm too nice and don't want to step on any toes. I really need to learn some assertiveness!! When I'm at the dr., and they are looking at me like...this lady is crazy, she can't possibly be experiencing all she is saying cuz she looks so darn good LOL!! I just kinda zone out and all I hear is...everyone is going through something, you'll just have to live with it.

You can throw my words back at me anytime, as long as they are the positive ones!!

{{Hugs}} to you, thanks for all your support Joann!!

Be blessed,

Bebe

[Joann]

Bebe,

You should call that branch of CC and see if they do any of the autonomic testing there. I am getting a bunch, at the main clinic, but I would think some of the tests could be done at the branches. At the very least their neurologists and cardiologists should have some experience with this, they are the place to go when you have hard to diagnosis or treat problems.I also got myself on Dr. Grubbs, (actually his assistant,, Beverly's) wait list. The wait list is 6-8 months for her, and about a year for him. If I don't need them I can always cancel, but if I am still needing help, I am least on the list.

I am not sure who you would ask about from the mcas, maybe immunologist or rheum? I need to look into that next. Geez.... why can't one doctor do this all, these specialists drive me crazy!

[bebe127]

Joann,

Funny you should mention your last response, "why can't one dr. do this all?" I was just talking with my sister earlier and asking the very same thing. This, I find, is one of the most frustrating issues. You tell your GP you have chest pain, they send you to a cardio. You tell them you have GI issues and they send you to a gastro. You tell them you have all these other symptoms and they suggest a psychologist aka padded cell . Maybe a padded cell is what I need!!

I am considering going to a dr. down here that is a homeopath as well as an MD (and of course she doesn't take insurance, but I've had many friends that have gone to her for other reasons with good results), but my hubs wants me to see a new EP (supposedly has experience with Dysautonomia) and get my heart checked out first before moving forward. Well see what happens...

Thanks again!! Be well

[Katybug]

Bebe,

I am sorry you're frustrated right now. I have pretty good docs and I still go in spurts with frustration. It takes so long to try something, see if its working, see if its causing side effects, wean off, try the next thing..

I definitely feel a difference when I am eating a well balanced diet vs. when I just eat junk . I To get myself to eat more fruit and veg, I made a deal with myself that I would start by replacing one bad snack with one healthy snack every day. I also made sure that I included either fruit or veg in each meal. For example, on a cooking day, I will Waite some mushrooms, onions, and bell pepper so I can include that in a scrambled egg for breakfast a few mornings during the week. I make sure that I make half of what I put on my plate is veg at dinner and I make myself eat them first so if I don't finish, I still got my veg. I also have learned to modify some of my favorite recipes to include more veg, without compromising the taste. For example, if I make a big pot of sloppy Joe, I make a small dice of zucchini, carrots, red and green bell pepper to bump up the veggies in the recipe but it still tastes great and most people don't even notice the difference. Creamy chicken casseroles are a great place to add spinach as you can't really taste it with the cream. I've also learned a few Chinese food stir fry type recipes since they are easy to include veg in. Maybe you can ask your hubby to try something like this.

And, finally, I have a neighbor that swears by her NutriBullet.

[looneymom]

Hey Babe,

I thought of one other thing that might help you with meals. Have you used a George Forman Grill? It's so easy to use and to clean up. I have the family size one and grill chicken, fish, pork chop, hot dogs and veggies.

[bebe127]

Thanks Katybug,

All good suggestions, now if I only felt like eating!! Hubs does try to put veg in just about everything he makes, last night was spinich lasagna, YUM! I can only eat about 1/4 of what I used to be able to though. I'm definately going to check out the NutriBullet!

Be well

Bebe

[bebe127]

Thanks looneymom,

We can grill out and we do grill in the house as well. I would be satisfied with just some grilled meat and a salad most nights. Hubs enjoys cooking and trying new things, so I certainly don't want to discourge him We do a lot of homemade soups as well.

Thanks again,

Be well

Bebe

[ramakentesh]

Blood pressure readings in pots can be confusing. As an example I feel dizzy when my Bp is higher and when my meds work or I'm on saline my Bp goes down which suggests the standing high Bp can be compensatory.

its hard when you can't get adequate treatment or care.

id try and see someone else if you can.

[boymommy3]

I am so sorry your are going through this! You do seem to be such an encourager on this site and so I hope that we can all encourage you when you need it.

I know you said that going out of town wasn't an option, but what about the Vanderbilt research thing.....if you didn't have to pay to go out of town, would that help?

Also, remember....Doctors work for you.

Even though you don't have any POTS specialists near you maybe you could start asking around for people to recommend a good doctor and then call the office and ask if they can find out if the doc has any experience in dealing with patients with dysautonomia. I know that sounds like a lot of work, but it might be worth a try. And could save you wasted time and money. Just start looking in a radius that you are willing or can travel to and then start with the ones closest and work your way out until hopefully you could find someone to start helping you more than your current doc is. Also, maybe start looking into not just at GP's but Neuro's, Endo's, and other Cardio's that might be able to help.

My GP is familiar with POTS but only to the extent of giving me a BB, Celexa, and telling me to drink gatorade everyday. The fact that I wasn't doing tons better on all that seemed to stump her. However, I am so very fortunate that she is maybe the most caring doc I have ever seen and if she can't figure it out, she sends me somewhere else. She keeps digging with me and also listens to my suggestions. The neurologist I saw locally seemed to be the only one I have seen so far who had a decent understanding of POTS, but even he said she was treating well and just to give it time. So.....you may not find an expert (which would be ideal) but if you could just find a caring and compassionate, NON-God complex doc, that might be enough for now.

Just remember, you may be helpless but you are NEVER hopeless!

Those who hope in the Lord will renew their strength. They will soar on wings like eagles; They will run and not grow weary, they will walk and not be faint. (Isaiah 40:31)

Praying for answers and brighter days ahead!!!!

[bebe127]

boymommy3,

Thank you for your sweet compliment I must remember myself that where there are valleys, there are always peaks. I just have to keep my eyes on the next peak and work toward that!!

What is the Vanderbilt research thing? Money is not the issue with me. I don't drive very often if at all and even then it is just around town and only when absolutely necessary. My husband has become my security blanket (aka American Express Card, if you will), and thus, I don't leave far from home without him!! Problem is his job is very demanding and he is on-call 24/7. Luckily he has some flexability with taking off work, but it is usually for appts. and such around town. And selfishly, when he does get a vacation (albeit, he even works during these), we tend to rather take one with the family instead of having to plan one around a dr.s visit. I know it sounds crazy, and I do want help, it's just that my family suffers enough already with this illness that I just can't bring myself to take a family vacation away from them. Plus, I have no family living nearby that could help out either. I guess I'll just have to be more determined in finding a dr. in my area. I mean for crying out loud, I live near two major metro cities with a great teaching hospital and University. Surely, someone, somewhere has to know something! I guess it's time to get on the horn.

One time however, my GP referred me to a cardio and I looked him up online (as I always do) and found that he had an email. I wrote to him, and his response was basically, I don't know much about that, you'd probably be better off sticking with your original EP (that I saw nearly 4 years ago!). All well and dandy except my dx. EP only dx's, he doesn't treat. So back to square one I saw a neuro a while back the the dx. EP referred me to and all he did was give me what seemed to be sobriety testing in the exam room and then told me that my POTS was not neurologic but cardiologic and sent me right back to the original EP. I feel like I've been going in circles. I must admit though, for the first two years, I was gung ho and seeing a bunch of different dr.s, but none of them seemed to know all that much, therefore couldn't really help. One EP I traveled to see even had the gall to tell me that my POTS was mild because I didn't faint and the result of the whole visit was him telling me I needed to possibly see a shrink.

My GP sounds very similar to yours. He put me on BB and Xanax; he is sweet, although hard to understand (Latin), and he does listen and try to help. I do consider dr.s to be my employee's as well.

Interestingly enough, I recently received a bunch of information in the mail from a new program that my isurance is now offering. It was all this info on POTS as well as names of dr.s in the area. I'm definately going to check them out. I told them I wished they would've had this program 4 years ago when all this started for me!!

Thanks again for your sweet comments It's funny, you know, I find it so easy to be encouraging for others, but have a hard time doing the very same thing with myself. Kinda like when I was little and would love to go to my friend's house and help her clean and organize her room, but I never liked cleaning and organizing my own!!

I might seem helpless at times, but I shall NEVER BE HOPELESS

Blessings to you,

Bebe