Discouraged - Any Thoughts?

[FarmerAmy]

I am feeling really discouraged today. I've been trying my latest treatment, IV fluids, for about a week and they aren't really helping.

I feel like I don't know where to turn. I was seeing a cardiologist for about 6 months and she ran out of ideas for me. For the last 6 months I've been seeing a doctor who practices Functional Medicine. She is trying to help me with adrenal insufficiency and fungal dysbiosis and she says this will improve my POTS symptoms. It all sounds good on paper, but so far no improvement.

I am at a loss for what to do. I don't know if I should stick with my current doctor for a while longer and see if she can help me. Or maybe I should look into going to someplace like Vanderbilt in the hopes that they will help me understand my POTS better. I feel like I spend so much time and money dealing with my illness, but I don't see any results. Sometimes I feel like I would be better off just trying to eat healthy, relax as much as possible, and excercise as much as I can.

I dream of having something like a physical therapist--somebody I can go to each week and tell them what I've been doing and how I've been feeling and they could guide me. I feel like I never know if the things I'm trying are helping or hurting me. I spend most of the day reclined so that I don't feel lightheaded. Is this what I should be doing? Or should I push through the lightheadedness in order to strengthen my system?

I feel lost and don't know where to turn. I'm sure a lot of us feel this way. I don't know if there are any answers out there, but I thought I would see how other people deal with these things.

Amy

[Katybug]

Amy, Why not do both? You can keep seeing your functional Med doc and make an appt at someplace like Vanderbilt. Their wait list is long anyway and you can cancel if your functional Med doc helps you during the wait.

[corina]

I think I know how you feel. After my POTS doc gave up on me and my GP trying to help me as well as he could I got worse without anyone (specialized) knowing what to do with/for me. At that point I went to see the doc that gave up on me (as he's the best in this field in my country) and almost begged him to feel responsible for my case. From that time we started to work very well together. It's not that he always knows the answers but we're on the same wave length and are both doing what we can to give me the best quality of life possible.

This might not be the answer for you but might help you to take your life in your hands and hand it over to someone who does his utmost to help you get a better quality of life. Warm wishes

[HopeSprings]

At that point I went to see the doc that gave up on me (as he's the best in this field in my country) and almost begged him to feel responsible for my case. From that time we started to work very well together.

I'll have to try that!

Amy - I could have written your post. I've tried pretty much everything recommended to no avail. I went 4 times for IV saline and it did nothing. As far as pushing through the lightheadedness... I've done it everyday for years and haven't found this strengthens anything. I think the key is finding the underlying cause for the symptoms, so the right treatment can be given which will target the problem. No easy task, but I think our chances improve with highly specialized Doctors like the ones at Vanderbilt. Although, even then, I know people don't always come away with answers. If that fails, then all we can do is to keep trying different medications/non-medication treatments and hope to hit on the right thing. And once that has been exhausted, we're left with lifestyle modification, working around the symptoms and somehow just learning to cope. I'm hopeful that more and more will be learned about this illness and once that happens, we'll have more options. Sorry, I think I have just stated the obvious, but wanted to empathize with you because I (and so many of us) know exactly how you feel.

[jangle]

Despite it being listed as a conservative treatment option, endurance aerobic exercise is a powerful tool to use in alleviating symptoms. If you are well enough you might want to consider trying to incorporate daily aerobic conditioning.

I'm sorry to hear the IV fluids hasn't been as effective lately, I would still say that giving fludrocortisone another try might have some benefits. I know for me it has helped my lightheadedness at a rather low dose of .1 mg/d. I might try to go from here with exercise and see where that takes me.

Going to vanderbilt is never a bad idea, they might be able to run additional autonomic functioning tests as well as more sophisticated tests like measuring your blood volume in order to determine more specific treatments.

[Dizzysillyak]

Hi amy,

I can relate to what you're going thru. I've been seeing a functional dr for 4 years now and while

we've identified and corrected many of the leaky gut problems, I still need to lay down most of the time in order to feel healthy. Granted these tests can't pick up everything and I may have unknown

parasites, bad bacteria, etc. And I'm positive for high mercury which I haven't treated yet.

So while none of the leaky gut treatments I've tried so far helped my oi, mast cell meds have. I have anaphylaxis and angioedema so needing allergy meds is a no brainer. Which explains why I didn't

figure this out .. Lol.

More and more of us with oi are finding out that we have mast cell problems. Imho, Waiting for the medical community to catch up to what we patients are learning will only hurt the patients.

Most days since starting the mast cell treatment I haven't felt an overwhelming need to lay down

like I used to. Kow. But I still feel better when I take the time to lay down and allow my blood to circulate properly.

Exercise is an option I'd try if I had someone cooking and cleaning for me. But as it is, my body needs to rest.

I'm trying to narrow down what meds to take and what foods or chemicals I need to avoid but it takes a lot of trial and error self testing. It appears that Wal-zyr, Walgreens brand zyrtec tablets,

helps me the most.

Personally, I'd skip chasing a pots dx and stick with your functional doctor. Six months isn't really long enough to see major improvements. It took me a whole year after giving up gluten to walk normally. Hopefully you're on a healthy paleo type diet and are in the process of eliminating your food and chemical triggers.

Tc .. D

[looneymom]

It's been a year since my son was diagnoised with POTS. Things are better but its been a long haul from being bedridden to being able to do the xbox connect for 20 minutes. We have a cardiologist, neurologist, physical therapist and a family doctor to help manage POTS. However, I am constantly researching and looking up other medical conditions because of a pain issuse. So far our doctors have been willing to investigate and run other test to rule out other conditions. Make your appoinments and keep researching. Exercise and diet has also made a difference with our son. Be patient with your doctors. Keep making changes with exercise and diet to see what helps the most.

[FarmerAmy]

Thank you so much for the suggestions everybody. I'm not quite sure where to go from here, but you've all given me a lot to think about.

I've been feeling sorry for myself the past few days. I hate feeling this way :-( I think it comes from getting my hopes up about a treatment, then being let down. Again. That's where I struggle with being chronically ill. I feel like my emotional state does better when I work on accepting where I am right now and remembering all I have to be thankful for. But part of me feels like I need to keep trying things to try to get better. However, this is what leads to the emotional roller coaster and all the disappointments.

[Dizzysillyak]

Amy,

If it makes you feel any better, many of us are on similiar roller coaster rides. So you're not alone.

Our bodies are all a little different in how we respond to each treatment which is why

our doctors can't just wave a wand and make us healthy. ; )

They do see trends tho and via testing can give directions on what you should respond to.

I get down when treatments fail too but finding a new treatment option motivates me again. Try to think of

your new diet, etc as a lifestyle change not a quickie diet to drop weight. You're building up your

imune system and your knowledge base.

Tc .. D

[spinner]

I hope you take this the right way----but youre exactly where you should be in a lot of ways, which is frustrated by having a chronic unexplained, and not perfectly understood illness.

I wrote awhile back about what stage of grief people are in with their illness, and we switch back and forth between disbelief, denial, and acceptance. I concluded that people arent really in one stage or the other, but they can be almost in all of them intermittently.

Im there, and it sounds like you are too. I go back and forth between thinking this will be ust some phase that eventually passes (its been 2.5 years) or its eventually going to completely disable me. To add insult to injury, a lot of us have had borderline test results, or have 70 percent of the likelihood of something. In my own case, I was originally thought to have MS and heart problems, only to find out I had apnea, 1 phase of dysautonomia but not all, adrenal problems, and palpitations caused in my nervous system. It can be like an infuriating puzzle.

Im not sure I can help much, but Ive learned a couple things through trial and error

1. Most people will never understand your illness, especially since you may 'look fine'. Most wont have a lot of compassion or interest in it either.

2. You have an incredible need for really smart and supportive ...friends, a few anyway. Even one. They should be good listeners, detectives, researchers. You need help when youre sick. You also need a little bit of guidance when the brain fog hits.

3. Your spiritual life becomes front and center at a time like this, or it should. Before now, you may have been busy with life, too busy for God, but now your full attention is there. Thats a good thing.

4. Be confident in yourself and your knowledge in your body. You know it better than anyone else.

5. Dont be afraid to know more than the doctors. This forum is full of people who know more than most MD's about DA.

6. Keep researching, discovering more information. Forums are most helpful, I pick up things on mast cell forums even though I dont have mast cell issues. Ditto Fibromyalgia (even though i was diagnosed with it, but dont believe I have it). Some of us here probably have lyme disease but dont know it for example. Some are d3 deficient. Some have sleep problems or serotonin problems. Keep learning, but take breaks when you get burned out.

I hope that helps, PM me if you'd like. Ive learned the importance of having like minded people around you. You probably dont have so many in your real life, but when you get sick you need them.

[badhbt]

Spinner...so true. I am 4 months into my flare and just keep hoping it will end...soon. I have spent so much energy and time in researching that I can almost always figure out what people have on that show Mystery Diagnosis....haha.

Sometimes you do have to try to find the positive in such a negative situation.

I definitely have become more spiritual through all of this. I also learned that I totally took my health for granted.

[spinner]

Yes, I see people around me taking their health for granted, and now im amazed.

I see people smoking and cant believe it.

When I was at cleveland clinic i was in a flare, and i was amazed at how "fit" everyone was and how fast they walked

from appointment to appointment.

Just the ability to walk without any problems during a flare is a major problem, that 99 percent of people

completely take for granted. But like you said, spiritually, it reminds you that the human body is designed to

be so incredibly complex.

[FarmerAmy]

Thank you again for the encouragement, everybody! I am feeling much better emotionally. I feel like that roller coaster ride of hope and then disappointment is just so brutal. I really do so much better when I focus on acceptance and being thankful for what I do have. Not to say that I'm giving up, but I think I really have to guard against the feeling of "Finally! I've found something that will help me!" That has lead to too much disappointment for me.

And I notice that my symptoms are much worse when I am upset. I start having chest pains and headaches, etc. I do so much better overall when I am in a positive state of mind.