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!!!!

I do something similar to this and have for years. 10 and 2 are what I call my "wilting" times. I am good in the am (unless I am in a POTS relapse then usually the whole day is bad) until about 10 and the feel like I need a serious nap! I usually just push through and drag for a while and then I get a second wind....until about 2 and then here comes the seriously needing a nap feeling. I cannot read to my kids in the afternoon during that time or I WILL fall asleep! Then I get a second wind and am usually ok the rest of the night. Do you by chance have any thyroid issues?

I know that last year I had some kind of nasty virus. High fever that was difficult to control and THE WORST body aches I have ever had for a good 4 or 5 days. It wasn't the flu though..... Hope you get better fast!

WOW! Issie, soooo happy for you!!!!! I just got The China Study today. We made vegan brownies for dessert tonight. I just figured that if you're going to start with a new way of eating why not start with dessert! Please keep us posted on your progress! Also....i would be cool if you'd post on the chit-chat forum some of your favorite vegan recipes or foods.

Wonderful!!!!!! So very happy for you!!!!! Yet another wonderful thing I am seeing about a vegan diet.

I have been in your boat for a while. My doc started me on a BB right away when I started having this last relapse. She has just been doing orthostatics on me in the office and I met the criteria. She did tell me that in order to do the TTT I'd need to come off my BB. I haven't wanted to so that because it helps soooo much! So....I don't really buy into the theory that if you have it, you have it no matter what meds you take. Otherwise why would we take meds in the first place. AND....everyone is different. Doctors try so hard to put us all in a nice neat little box they can mindlessly prescribe medication to. They don't want to have to look at the individual and try to treat them as such because it's more work that way. My thoughts on this are....if YOU know that you are still symptomatic on your BB then it might be just fine to do the test on them, however, if you are like me and the BB help tremendously and aren't always symptomatic then why risk getting a false negative. I haven't had the nerve to come off my BB yet either. It's not the test that bothers me....it's the hr issues that come when I'm not on the bb. Incidentally....my neurologist told me he wouldn't expect me to meet the hr criteria on the bb. The day I was in his office my hr only went up 12 points upon standing. Also...in terms of doing tests on meds. I DID have a treadmill stress test on my bb. The techs at the hospital were VERY surprised that my cardiologist had me do that way. They said they always have people stop their meds for the day of or before the test. SO.....my guess was that he had me do it on my meds because I WAS still symptomatic of some things on on the bb. I passed the test with flying colors (in terms of no weird stuff showing up)....so I am not sure what that means. Would it have been different had I not been on my bb? That's the million $ question, I suppose, The FNP who was present while I was on the treadmill said that she was surprised that they were able to get my hr up so high on the bb, which in her mind would was more indicative of POTS.

SpinnyC.....that is hilarious!!!!!

I know exactly what you mean.....since December I have seen my GP, cardiologist, neurologist, endocrinologist, and getting ready to go back to my gastrooenterologist. Seriously....it's ridiculous! I just wish that a a group of docs who know about POTS/Dysautonomia would put together a practice with each of these types of specialists involved so that they could work closely together and as a team be able to treat the WHOLE person!!!! Wouldn't that be nice!

I think maybe just starting with your GP at first. Letting them know what's going on and maybe they can point you in the right direction. I know that sound a little laughable..... the thought of a doc being able to point someone with POTS in the right direction, ( ) but it's worth a try. As far as your symptoms, I have had something similar to what you describe but it just hasn't lasted as long as yours has. I do often get a burning sensation on my skin. Good luck in your search and I a so very sorry you are going through this!

I recently went to the ER and after telling the doc my symptoms and issues she said they were there to make sure I didn't have anything life threatening and that outside of that I would need a much larger workup with my GP. So they did labs and an EKG and sent me on my way and because all of that was fine they sent me on my way. I would tend to think though that if they thought your heart was enlarged they would have told you so. Did they say anything at all? Sometimes docs offices have cancellation lists that they will put you on or if not, you can just call daily to see if they have had any cancellations. Maybe you could try something like that with your cardio. I pray you get answers soon!

I have never had serious allergy issues either. Never been too prone to nasal problems. I do get itchy eyes a lot in the spring and summer and it can be really bothersome. If I don't touch my eyes I'm ok, but if I touch them....it's all over...they itch so bad I tell my husband I feel like I could dig them out of my head. I honestly don't even get headaches very often, but have noticed of late that I have been getting more. I have noticed that I have become more sensitive to smells. Not that I have an allergic reaction to them (other than a headache sometimes), but it's like my sniffer is on overdrive...I smell things all the time way before my family does. I had some food allergy testing done quite a few years ago but outside of that I've had nothing either. I did have something called Erythema Nodosum when I was pregnant with my oldest and I am not sure if that would be related at all. BTW, sorry for all the crazy typos in my earlier posts....it was late last night when I was posting and sometimes my brain works WAY faster than my fingers! LOL! Ah, yes.....to be "all better" would be sooooo very good. Thanks for the links....I am checking those out! I can't wait to go back and see my Endo and get my test results from him. Even though he doesn't know about POTS ( I love him and he's so thorough in other areas) he thinks I have something autoimmune going on. It's just a piece to the puzzle but it's oh so nice to be able to put pieces together! Blessings I your search as well! I pray we can all find the answer!!!!

Issie....thanks! I will keep you posted on how things go for us. I also had a friend recommend The Maker's Diet. It's apparently on the same lines and China Study but maybe not a strict. It's a process for sure, changing eating habits. Not easy with kids who are picky eaters either. I have two kids are are picky and one who isn't. It's so strange to me because they have all been fed the same food their whole lives but one of my kids LOVES good food. I am convinced he's gonna be a chef. The other two....not so much. ARGH!

I am ordering the book from Amazon and hope to start getting on board. I am believing that is something to it as well. There is a doctor in our community that is an internist who is treating people by having them go on this diet. I have heard nothing but wonderful things about him either. We LOVE our current GP but I am considering having my husband and I see him just to get some info and see what he has to say about the two of us. We also have some friends that we go to church with. The wife use to be a dietitian (she's now a SAHM) and her husband is a general surgeon in our area and they follow this diet pretty closely as well. They've both read the book and believe pretty strongly in it as well. One thing I am struggling with though, in terms of not eating animal based products, is that I believe strongly that honey is good for us (obviously not in large amounts). I believe there is much data to back this up. We raise bees and sell honey. I just can't imagine that we will cut honey out of our diet. I don't know what the China Study says about that yet, but I do know that people who are 100% vegan won't eat or use anything with an animal product in it.

Can POTS cause bad cases of acid reflux or have anything to do with it at all? I just know that a couple of years ago when I started having all these problems one thing was unrelenting acid reflux. At one point I was taking 600 mg. of Zantac and a 20 mg prevacid or prilosec (I can't remember which one) and it still wasn't even helping, EVERYTHING was coming back up. I couldn't even eat sometimes. Finally went to an ENT and he tried me on something else and backed me off the zantac that another doc had me on. He said that was an awful lot of zantac to be taking, especially for it not to be working. But what ever he switched me too didn't work. At the time I was convinced that I had holes in my esophagus from it because it was so bad. I went to see a gastro and he did an endoscopy and said other than a little redness things didn't look bad at all. I was shocked. He did put me on Nexium 2x a day then and it completely went away. I got off the nexium and was still fine. I couldn't eat too many tomato based things in a row but other than that it completely went away. Along with all my other symptoms. But now, since I have started dealing with all these issues, the acid reflux is coming back. I have had it not stop for about a week now. Haven't started taking anything yet, but I believe I am going to have to.

Bebe, YES!!! I get itching with Hhot tub jets or being in the hot tub just being in the hot tub too long! This was before POTS as well, just like my itching when jogging/exercise. I did used to think it was weird but never really considered it a possible symptom of something. It's just crazy, isn't it?! For real, though, I cannot sit against the jets very long at all before it starts to itch. I don't have trouble with the shower either. My skin will be quite red after a shower sometimes but I like to take a hot shower (well, not so much anymore, it makes me feel weird so I haven't had the red skin thing for a while) If you find good MCAS info let me know. I have just started reading about it and it's kind of blowing my mind. I don't know if it's my brain fog or what, but it is very confusing to me.

We have seen the Forks Over Knives movie....we were like WOW! after we watched it but never really did anything about it. It did freak me out a bit because we eat a lot of animal based foods....mostly organic though. We raise our own chickens for eggs (we don't do our own meat chickens) and for the last two years we have purchased a 1/2 of a beef from a local farmer. It's so hard to change your mindset sometimes when you thought you were making better choices anyway. However, we just found out my husband has really high cholesterol and borderline high triglycerides and blood pressure. It's very concerning because he isn't over weight and is super active. He's a PE teacher and coach and he really does try to practice what he preaches to his students. The most concerning thing though is that his dad died at the age of 41 of a heart attack and my husband will be 40 this summer, so I don't believe it's all about diet with him.....I think there are certainly genetics at play here. That we can't control, but diet we certainly can. I am getting serious about changing some things in our diet and I am thinking this is the way we are going to go. Not to mention the health issues I am having....and we also have a son with CHD so there are no shortage of reasons now to maybe change the way we think about some things. I do love my fresh chicken eggs though! I would be interested to know how your diet continues to go and what changes you see, Issie. I have been following a cool blog for a while now, it's called chocolate covered katie. She's vegan and she puts a lot of interesting recipes on her blog. You could check it out if you like.

What do you guys think about it?

This itching thing I get on my legs A LOT from walking/jogging!!!!! I have done this for years....way before POTS. Someone posted on another thread that I was on that I could some of my symptoms sounded familiar to MCAS, but I tell ya......that stuff is soooo confusing to me!

Doing dishes would be the worst for me I think. I guess because I have to stand still the longest, however, I am having trouble keeping up with housework period due to fatigue. My house is wreck right now, I just get bare minimum done and it's very frustrating!!!! I wish I could hire someone to clean!

I am laughing right now because I just noticed that I typed keens instead of knees! That's just funny!!! My keens are just fine, don't think they will give out anytime soon. My knees, on the other hand, are a whole different story!

Wow, I am so sorry that you guys have such a hard time. It does however, make me feel less alone. I have had thyroid issues for 15 years. I seem to always be hyper functioning. But it's weird....My Tsh is repeatedly low and even when it's normal it's usually a low normal, however, my FT3 and FT4 are quite normal. So that leads my docs and endo's I had my antibodies checked 2 years ago and they were ok. But this week my endo said that even though they were ok last time they weren't perfect. He is checking me for everything under the sun right now. He is looking further into pituitary issues and adrenal issues since we keep getting conflicting reports between what my pituitary says my thyroid is doing and what my thyroid is actually saying. I did the 24 hr urine but they didn't tell me I had to bring the urine in before 8 am. I hope that didn't mess the test up. I have also had my cortisol and ACTH checked, but it was a blood serum cortisol and it wasn't even a am and pm. It was just am. So not sure that was done correctly. I do know that he is checking my them both again with this last round of blood work ordered. Kit...I don't mean to sound ignorant but what is this HPA axis disorder? And by CFS do you mean chronic fatigue?

This perplexes me as well. For instance my blood serum sodium when I had it checked in December or January was borderline high but within normal limits. I did a 24 hr. urine sodium and it, too was within normal limits but on the lower end of normal. So to me it seems that I don't have a sodium issue, however, I can tell a difference in how if feel drinking Gatorade and eating saltier foods. I really do feel better. AND...I don't even have really low bp and never pass out. It seems so strange to me. And I keep struggling with the fact that it can't possibly be good for me to drink a 20oz. Gatorade every day.

I feel that way A LOT!!!!! I keep telling my doc that I feel like my keens are going to give out and I feel like I can't walk up stairs well sometimes too or just walk far distances period. When I saw the neuro, after he did my neuro exam he said that he wasn't discounting my symptom of weakness al all but my muscles themselves weren't weak. I don't know what causes it but I hate it!

I know I keep running this into the ground and I am so sorry! It's just that some times my anxiety gets the best of me Today all day my hr has been higher no matter what I am doing. It's over 100 just sitting here. I am having a hard time understanding this since I am on bb. and I am starting feel panicky!

I think I would call my doc on Monday....just to make sure he thinks this is ok.