Katybug

jen, Nothing to add in the way of knowledge but just wanted to say hi and that I am still thinking of you everyday and hoping for your recovery very soon. Katie

I have been through the bad docs too. At one point, about a year into this whole mess, I was so angry I refused to seek any medical help for about 6 months except for my chiropractor. My veteranarians for my pets were actually more caring and reliable than any human doctor I saw. And, I have to say I still think there are a LOT of BAD doctors out there. But, once I changed my view of how I was going to get good helath care, it really changed the quality of care I have been receiving. I pulled on my skills as an operations manager to make this happen and many of these skills revolves around a book called "Crucial Conversations". This book is not an easy read but it has been extremely useful in getting what I need out of doctors (and also figuring out if the doctor in front of me is capable of giving me what I need or expect.) Please don't think I am preaching, I just found a formula for me that has been working to find docs that really care and want to share, in hopes that it may help someone else. Its certainly not fool-proof and I still come across bad docs, I just move on from them faster and with less emotional damage. So, while I would love to vent again, I am going to try to be positive for just a moment (because I have finally got a medical team that I feel will get me back to the best me I can be) and this is how I did it: 1) I started looking at this situation as a business transaction. Because no matter what we, as patients, want it to be, this is the doctors' business, so it IS a business transaction to them. As such, I did what I would do when I outsourced any other project...I started looking for the best service providers for the project. I was willing to weigh current knowledge against willingness to help and learn. Essentially, I started a search for doctors who want to be healers, not money-makers. I felt like healers will search and find answers or solutions, money-makers will take my money and waste my physical and emotional time. 2) I had a crucial conversation with my PCP. I told him I didn't expect him to have the answers but I wanted to know if he believed me and if he was willing to help get me to the right specialists. He got on board. If he hadn't, I was fully ready to let him know he was fired. 3) When I need a referral to a specialist, I ask my current doctors' the following questions: a) Would you see this doctor? If I was your spouse or child, is this the person you would want trying to figure this out? c) You know I have an outside of the box problem. Is this doctor an outside of the box thinker? d) Is this doctor known for having a good beside manner and caring for their patients? (I am amazed at how much the docs know about each other and how their answers change when I ask these questions. That's right, they have given me a different name because I asked these questions!!) I also ask more than one of my current docs for names in hopes that they give the same name...that makes it easy to choose! 4) I show up with all of my records and I have a brief dialogue with the new doctor at the beginning of the 1st appt. about my goals and expectations. They will usually give me a pretty clear picture of whether or not they will be my doctor for a 2nd visit. If they are willing to listen and respond openly to that dialogue, they usually are one of the good guys. The ones that give bad body language and look disgusted that I even brought up having "goals or expectations" have generally not seen me a 2nd time. Again, this is a skill I learned form the book I mentioned. It allows me to not get invested in the docs that aren't going to work out. In fact, I have cut an appt. short based on the response I got from this and went home and found a different specialist. This required more time and patience, but, I ended up with a really great cardio because of it. She's the one that actually dx'ed my POTS and I wouldn't have found her if I had stuck around to be demeaned and demoralized by my 1st attempt at a cardio. He was just mean! 5) I show up to every visit with a written summary of changes, new symptoms, list of my medication/dosages, and my questions (like I would show up to a meeting with a written agenda.) It keeps me organized, relaxed, and ensures I don't forget anything. This, in turn, moves the appt along faster which the doctors seem to like, so they stay more attentive. (What keeps them happy usually keeps me happy.) Plus, if I am having a really bad POTS day, they can read the paper and respond to me without my POTS brain having to try to keep it all straight. 6) I google everything I can about potential new docs. I have found that I have been getting better care from those docs that do research that at least comes close to the reason I am seeing them. I am a little medical puzzle for them to figure out. (Like this new immunologist had a twinkle in his eye when he got my lab work back showing the mystery elevated imflammatory marker. He is a caring doctor, but, he also has a researcher's mind and likes to chase the science. In the end, it benefits me even if I am a guinnea pig.) Plus, there are several free sites that have patient reviews and this has given me some red flags on a few docs. 7) Last and most important, I have to care more than anyone else, and, I have to care about myself before anyone else. If I don't, who am I waiting on to do that for me? No one is going to show up. I have to be my own best advocate. (I learned this from Suze Orman. She was talking about money, but I am pretty sure this applies to my health even more so.) If I am not getting what I need, I need to make a different decision...either change my approach with this doc, or, decide I need to find a different doc. Being assertive and persistent have changed the level of care I receive.

When this all started (and before we knew anyhting about POTS) I was given 4 wks of prednisone for severe tendonitis that had developed in both of my hands and shoulders plus they thought it would help my unexplained pain in all of my joints. I was in really bad shape back then and I know that I had tremendous relief. But, I can't say for sure that my "POTS symptoms" were helped or not. I was in soooo much pain in every joint in my body that getting relief from the pain seemed like a miracle. I definitely was still sick in other ways especially my GI issues which were in a constant flare back then. I know none of my symptoms felt worse on them.

I usually have to drink a cup of fully caffeinated or half-caff coffee in the morning in order to start to feel like I can function. BUt, there are some mornings when this does not help and I am headed back to bed or the couch.

Hey puppylove, Sorry this is turning out to be so difficult. I just wanted to chime in to say that because my medical records from 4 years ago when this started, show that I was treated for anxiety (which we know now was a wrong diagnosis...I had POTS), I have had some issues with people taking me seriously regarding my POTS. I was correctly treated for depression in high school and college but here's the rub in my mind... I could be nuttier than squirrel poo and also have POTS, or, I could have not one mental issue and have POTS. They are two separate entities but when there are mental health issues documented, people seem to forget to read the rest of your chart. Please, please do what you need to do to have your POTS documented (and in your case, re-documented) so your path will be a little easier. Once I had the documentation from a neurologist who is known to be a POTS expert, it really changed the whole playing field with other doctors and with several insurance issues. The POTS neuro also much more clearly documented the disabling nature of POTS because he sees its effect on his patients daily. His notes were worth more than all the other documentation I have. Keep your chin up...things have a way of working out eventually. Katie

issie, I am familiar with probiotics but can you tell me which enzymes you are referring to? It would make sense that this may be malabsorption issues. For reasons I'm sure you don't want me to describe, I know I do not digest my food completely, so I very well may be malnourished in the true sense of the word. (Even though, I too, am currently absorbing fat just fine. )

Hi Claire, Getting all the tests is like a roller coaster. Its normal to feel both hopeful and apprehensive about the results. I went through this earlier this year, when after 4 years of mystery, I started getting answers. It was scary at first. But, here's what I tell myself these days...Better the devil you know! It at least gives avenues of treatment and it can also allow you to deal with whatever emotions it brings. I believe the constant up and down of not knowing is both physically and emotionally unhealthy for us. It is great that this doctor is trying to get to the bottom of this. Try to look at this as a way to move forward. Katie

I have always felt like my slower breathing (really all the changes in my breathing patterns) is my body's response to trying to regulate my heart rate and therefore my blood oxygen levels. I suspect there are multiple chemical reactions that are off in us that we are consciously and unconsciously compensating for all the time with POTS. I think of the breathing as just another counter-maneuver. I also was dx'ed with mild sleep apnea and they wanted me to use a CPAP machine but it made me so nauseous, dizzy, adren. surgy, tachy in the first 15-20 minutes of having it on that I didn't keep it on. I tried for several nights and it was no good. Similar to Bren's comment, it seemed like it was too much air at one time even on the lowest setting.

jenglynn, So sorry this is also becoming a fiasco. If anyone deserves a break, it is you. I haven't had IvIg but I have to say I don't think I would have another infusion without having a conversation with the prescribing doc at Mayo. I feel like maybe you, or you and your husband, need to be more aggressive about getting a response from them. A week is more than enough time for any doc to return a call. In the meantime, if the local doc is telling you that your life is in peril to go forward, I think I'd listen to him. (Sorry for being blunt but anaphalaxis is no joke.) Do you know if delaying the treatment by a few days or a week (until you can make contact with Mayo doc) will be a significant set back with this treatment? If you choose to go forward with tomorrow's treatment, could you request to have the infusion at the hospital so you are right there if you should have a full anaphalactic response? At least treatment would not be delayed if you are already at the hospital. I truly think of you daily and I will say some extra prayers for an answer for you today. Big hug! Katie

Thanks, everyone. Those are some good leads. I forget that the Florinef can have other steroidal effects besides just holding on to salt/fluid. This did start after being on the Florinef for a little while. I have tried seeing if different combos of food, for example low carb, lots of veggies and proteins, would make me feel fuller than moderate/high carb diet. That's what makes me think it might me autonomic issues...I should feel full after eating 3/4 of a dinner plate of veggies and a chicken breast but I don't. I know logically I should feel full but I don't. Same with high carbs...I still don't feel full. I have been tested within the last month for candidiasis and I don't show infection. If you think of anything else, let me know. I'm gonna work on these ideas in the meantime.

I agree that there is a link, if not to thyroid specifically, at least to autoimmune issues. I, too, was just dx'ed by an immunologist with chronic immune-mediated imflammatory disease of unknown origin (because I don't fit any of the "known" autoimmune diseases in the lab work but I am consistently showing extremely high C4a (an immune inflammatory protein). Some of the highest levels he's ever seen (and he does research at NIH.) But, even he re-tested my thyroid function because they all think that with my family hitory I'm liable to end up with thyroid issues of some sort. Regardless of all of this, I have been thinking for a while that there is some link to autoimmune issues. And, I more specifically wonder if it is the inflammatory process involved with most autoimmune disease that is the culprit. The part of our immune system, the complement system, that mediates inflammation is responsible for activating multiple reactions in our body that can contribute to POTS type symptoms when it is out of control. http://en.wikipedia.org/wiki/Complement_system http://en.wikipedia.org/wiki/Anaphylatoxin

Pupil dysfunction is a known issue with POTS as it is controled by the ANS. I don't have it but you may want to make sure you take some research/literature if you are going to an eye doc (vs. a POTS specialist) so the doc can get some understanding of the autonomic problem.

All of my thyroid tests always come back normal but my mother and my older sister both have Hashimoto's. My maternal grandmother also had Grave's disease. So, all the women in my immediate family have autoimmune thyroid disorders. I also have several women in my extended family that have thyroid issues. I'm holding my breathe.

Hi s-pot, Sorry the docs are not being attentive. I think its safe to say that most of us have gone through this in our POTS journey and some are still searching. It makes it really hard to deal with being ill when even the docs are not taking you seriously. But, keep searching as there are good and caring health care providers out there. As for the TTT, I think it is really important for you to have a full TTT (45 mins.) in order to get a complete diagnosis, at this point. The poor man's tilt proved you have POTS, but, you may also have other autonimic problems like neurally mediated syncope (which involves your BP dropping) and that will require a full TTT to diagnose. Good luck to you in your search. I will keep you in my good thoughts! Katie

I have been in the past but maybe its time again.

So, we always talk about the nausea/vomiting/diarrhea/cramping/no appetite part of POTS. I have that multiple times a year and I usually lose 15-20 lbs. in about 2-3 weeks when it happens. I have not had one of these episodes since late summer and I am not complaining about that. But, I have a new thing going on...I can't seem to stop eating. I am almost never satiated. If I do feel full, it only lasts for 1/2 hr. to an hr. I have gained all the weight I lost the last time and then some. And, honestly, the eating is out of control. It is almost compulsive and I have never had this problem before. I often notice that it is associated with my POTS symptoms in one way or another. Today, I couldn't get warm and I had just eaten lunch (a LARGE salad and a small chicken salad sandwich) so I should have been full. When I finally gave in and ate more (much more) until I "felt" full, I also became warm. I also find that when I feel like I need salt, I will have a compulsion to eat large quantities but once I do, I feel better all over. Dizziness and weakness go away for a while. I have been tested repeatedly for hypoglycemia and diabetes and have no problems there (at least not according to labs and blood sugar monitoring.) Does anyone else experience this? It is getting out of control for me and I am excercising but of course that is limited to what I can do without bringing on more problems.

I have the same breathing patterns Bren describes. And, when I take one of those deep breathes, it gives me an adrenaline rush. I can feel the adrenaline wash through my arms within 1-2 seconds of the exhale.

I stopped driving full time when I started feeling drunk and then would have a full pre-syncopal episodes with hot flashes, severe sweating, dizzy, nausea, occassional vomiting. I won't drive if I feel any of these symptoms or if I feel weak or fatigued as I usually decline when I am feeling this way. If I am having a "good day" I will drive but I am very careful and I won't drive very far from home (no more than 10 miles or so). I haven't found anything that makes it better. Sorry.

Mine are low. Vit D is essential for strong bones but also for your immune system to function well so low levels can have various implications. It is important to know that taking the supplement isn't enough. You still need to spend 10-15 minutes in the sun with exposed, unprotected skin each day to allow the Vit D to be properly utilized by your body. If you take supplements but don't get enough sunlight , you won't be able to absorb it very well. It also should be taken with a meal that has a substantial amount of fat in it as it is a fat-soluble vitamin.

I was just dx'ed with chronic immune mediated inflammation and the immunologist thinks it could very well be the cause of all of my problems including POTS. The inflammatory protein that is elevated in my body, C4a, is known to cause vascular permiability, smooth muscle contraction, and histamine release from mast cells, in addition to causing inflammation. I am having a flare right now and my joints (all of them) are on fire. My skin also feels like it is bruised if it is touched. I do not test positive for any of the typical autoimmune tests but he said we will be treating me with one of the treatments used for an autoimmune inflammatory disease such as rheumatoid arthritis. He is weighing the options of which treatment to try first with some colleagues and we will be talking about it in about a week. If this is in fact the case, it explains my hypovolemia, my upper and lower GI issues, the weird rashes/hives, the joint pain, even the migraines.

Congratulations! I hope this gets you feeling better soon!

Count me in. Although I have had less (not completely gone) since I have been on Depakote for my migraines which has been successful in reducing the number of migraines.

sue, Its interesting you ask this because I hadn't thought about it before but even when I get so cold I am dressed in scarves and hats and under many blankets, I don't have goosebumps. I used to get them quite easily. Hmmmm....

That's great GInger! Just do little amounts at a time and you'll eventually get there. Its great that you danced with your son today!!

Yes, I have to eat and drink everything at room temp. Except when I feel really hot or cold (body temp)...then I can actually use food and drink to change my body temp. It would be kind of cool if it wasn't from being sick all the time.