issie

My doc at Mayo thinks there is a problem with mito. He says there are very limited test that can be done to detect it and for the known issues with it - thinks it's not conclusive enough for us with POTS. He says he thinks there is a problem that at this point in time can't be checked for. But, maybe in the future will be able to be detected. Issie

It's a long video - almost 2 hours. But, he addresses this in the video. He talks about autoimmune components and blood flow issues and how diastolic dysfunction can cause some of the issues involved here. He also talks about different types of people, the type that he feels will respond to what he is suggesting, are the ones that have pain along with their problems. He talks about himself and how he responded with his own immune system when his blood flow was restored because of having a heart transplant. He said what happens when people fidget and/or put their legs up vs. saline infusions and the amount of volume increased with both things. I find a lot of what he talked about interesting. There were a few things that I questioned however. But, I haven't done research on those things yet - so won't comment on them. What he talks about is all theory - he keeps saying that over and over. But, he is trying to have studies done to try to prove some of the things he is talking about. I don't know if he will prove it all as fact - but, it is an "out of the box" type thinking and time will prove whether or not what he is thinking will prove true or not.

I enjoyed this video. It seems to make sense. I hope that he is on to something and research will prove a good response. Interestingly, he is doing a lot of the same things my doc is doing with me and it does seem to be making a difference. This is a long video - but, worth listening to the end. Some interesting ideas and quite different from the main-stream way of looking at things. Issie

Sorry to hear of your terrible allergies. I have MCAS too and yes you can have a terrible anaphylactic reaction that can require an epi pen. I have two of them - just in case. I've only had one really, really bad time that sent me to the hospital. But, I stay on top of my allergy meds and try to pay attention at the hint of a problem and get on top of it pretty quick when it happens. We are all still learning. I never get tired of learning - there sure is enough to keep me intrigued. Issie

Thanks Janet! Issie

I do NO soy. Have real issues with it and think it's not good for you. My doc doesn't want us to do soy either - says tofu is pure plant fat. So, that's not a problem. You just have to make sure you get enough protein with peas and beans and believe it or not some veggies are very high in protein - asparagus is. I keep up with what I eat with a site that I found that breaks out your nutrients and the carbs/fats/proteins or your food. It's called SparkPeople and is free. I used to have some pretty bad intestional issues and all that has pretty much resolved itself with this new diet. Issie

Yes, it is a process and just takes some time, lots of trial and error and perseverance. We are all looking for answers. I think some of us are getting closer. Issie

http://nutritionfacts.org/video/carnitine-choline-cancer-and-cholesterol-the-tmao-connection/ I found this video interesting. Since I'm addressing my autoimmune issues mainly with diet and a few meds ---this was of interest in light of my becoming a low fat, vegan. It could be very important for those that are meat or dairy and egg eaters. At the very least it's thought provoking. One of the first things that is suggested by alternative docs when there is an autoimmune illness is to get off of dairy and gluten. Then there are many suggestions for MS to be low fat. My doctor put me on a low fat, vegan diet and I'm starting to have some wonderful responses. It takes a lot of determination. But, might it help us all?????? Issie

Benadryl is an H1 - histamine blocker 1 (Also, Claritin and Allegra) and an H2 would be either Zantac or Pepcid. I just read a few more of your post and I'd really seriously look into Mast Cell with your symptoms. It sounds like this could be part of your issues. Issie

Mast cells seem to love to degranulate at night when we are trying to sleep. Some of us use our H1 and H2's at night to try to eliminate the tachy that wakes you up things. I'm also on GastroCrom which helps to suppress the release of the mast cells in the first place. An over the counter mast cell stabilizer (that is not as strong) is NasalCrom. Issie

http://drmcdougall.com/med_hot_ms.html I was just reading about MS. Since I'm doing this diet - low fat, vegan, and know that it addresses autoimmune issues as one of the things I'm doing it for. I found this article on MS and the diet. Low fat and no dairy are two of the first things done in autoimmune conditions. Be sure and read some of the articles listed at the bottom of this article. Since, a lot of my symptoms have been MS like and I do have high NE standing levels ----gives me more reasons to stick with my diet. Issie

As for meds. I question them altogether. (I know I will get criticism for even saying this.) But, our bodies may be making compensations for things and masking or stopping some of these possible compensations --might make us worse. Really pay attention to your body when you are on meds and make sure that it isn't, long term, making things worse. At the very least, keep in mind that the med isn't "fixing" the problem it is only putting a bandaid on it and masking the symptom. If we could get more to the root cause of the problem, in the first place, and work on the core reasons --we may be more successful in a reversal rather then an aid. Not to say that we don't need aids ---hey, I take medicine too. But, it's just something to make us more comfortable. Issie

My husband asks this same question regarding POTS. He feels that maybe we are lumping everything into one category and there may be multiple things occurring. And we are just writing it all off and saying it's POTS. But, I guess for now --what other choices do we have. I've separated all my doctors out and had individual issues looked into and it still comes back to POTS and the autonomic dysfunction causing the other organ problems and issues. So, we get the SYNDROME thing attached not only to POTS - but, also this Regional Pain Syndrome thing - that does sound very much like us POTS people. Issie

As far as I know, there are two meds that lower hr and bp that someone with MCAS is supposed to be able to take. One is clonidine the other is guifacine. I did horrible on guifacine. Better on clonidine. I've also tried an ARB that gave me heart pains after a few days. We're not supposed to take beta blockers because they can cause a mast cell degranulation. Not sure about calcium channel blockers or ACE. I do know that some people have really bad issues with depression on calcium channel blockers. Issie

I love my diet. I've been doing it for 4 months now. Really good results with it. We have a Loving Hut here in Phoenix. I took my hubby there last week. It was his first experience with a vegan restaurant. He really enjoyed it and informed me that he is going to go more that way with his diet too. He doesn't plan to totally go vegan but more vegetarian. All is good with it. Just a few things I miss - but, I've messed up enough with it to really see what foods were doing to me that I didn't even realize. I'm more tuned into when foods are not good for me and notice it before I eat the whole thing and get sick from it and not know why I'm feeling so bad. It address my autoimmune issues and many things in connection to the dysfunction of my body. I'm really careful to make sure I'm getting enough plant proteins too. I keep up with what I eat and record it in a program that I found on the net that is free. So, I know if I'm getting all the vitamins and minerals that I need and know my fat levels and proteins and carbs. I'm eating so much more healthy then I ever did when I was an animal product eater. I can tell that my gastro symptoms are so much better. For once in my life everything is working properly on that level. Also, I have moons in my fingernails and they have smoothed out and hardly no ridges in them. I'm also assimilating my foods so much better. My skin looks better and I've lost some much needed weight. My energy levels have come up too. Things are slowly improving with everything. I plan to stick with this. It is a lifestyle change. Something I have control over and can do for myself. So far, my results are impressive. Issie

I'm not sure anyone can really answer this question without getting into trouble as like giving advice. But, I can tell you what it did for me. I have higher bp's and have swings that go lower, especially at night. What it did was to lower my bp and hr. I felt like I was on a tranquilizer. It sort of balanced out my swings. It leveled out the highs and the lows and the drastic swinging that happened. It can lower your heart rate and slows the hearts pumping action. It caused me to have more edema because of this. But, it was nice to not have the drastic swinging. I only stayed on it a few months because I got tired of being so tired. When I went off - that wild swinging never came back. I stayed more on a level field. I still have more highs then lows. But, with my diet and treatment that I'm doing for autoimmune connected things ---I'm really finding that I'm having some very positive things happening in the right direction now. I believe that I'm finally on the right path for me. It took a lot of soul searching and commitment to do the diet I'm doing --but, I think because it in itself addresses autoimmune issues - that has been my best treatment to date. I also only used 1/4 of a clonidine. I'm super sensitive to meds. I use other things to help me to sleep at night - by the way. If I start to have those drastic swings again - I will use it again. Otherwise, the edema and tiredness wasn't worth it to me. But, I did enjoy not having the terrible tachy for awhile. Maybe some others will chime in with their experiences. Issie

Interesting. It does make you wonder. I have the tremor, like this girl, and gait issues. So many of the problems listed. It is interesting that your serum levels can be okay but on the cellular level you may not have enough. Because I just recently became a vegan my doc has me using sublingual B12 and whether or not this is contributing to my improvement or it's just the whole thing that I'm doing combined ---something is helping me. Issie

I've had POTS most of my life. (I think mine was triggered by a vaccine when I was around 8 years old.) But, when I finally got my DX in later life was after what they thought was a TIA. At that time they found a brain meningioma in my left frontal lobe. At this point they continue to watch it because it is growing. I had another TIA a few years after that. So, thinking there may be a connection - but why or how - not sure. My doc said that he thinks if I have a stroke, it will be a bleed. Not sure I really wanted to know that - but, that's what he told me. I have some enlarged and ballooned out vessels around my brain stem area - in the pons. So sorry, that you've had those things happen. Not sure if that's what caused it but, it could be connected. Glad you survived. You are very fortunate. Did you have a lot of rehab? My father has had 3 pretty major strokes. He survived them all and did have to have intense rehab. He can walk and talk now. Scares me, because you wonder how deep a part genetics plays into things. Issie

It's interesting that so many of us have these issues. Those with EDS, CFS, FMS, MCAS, Mito Issues, OI, Neuropathy, interesting that ALL of this is touched on here. They are connecting it to the immune system and nerve transmission. I've said for a long time (as have others) if they find a cure for CFS then POTS won't be too far behind. I think CFS will find it's cure before us because it's got a lot more research being done on it. But, it does seem that there is a connection to all these things. Maybe, it's like the big Elephant in the room that people are only seeing a portion of and trying to define that individual part --when as a whole ---it's all connected. Maybe, there will be one underlying factor. I found it interesting that they said this has a genetic component, they think, and one could be born with it. We are finding that to be true with some forms of EDS. I suspect that since there are so many things in my family, there probably is a genetic component and maybe epigenetics at play here. But, getting down to the root "cause" of it hasn't happened yet. (I'm still working on it though.) My father fits nearly everything talked about in this article. He and I are so much alike in our presentations and what we have going on with us. My sister and her kids have similar but different issues. My mom probably has MCAS and my maternal grandmom we think had EDS, MCAS and POTS. So, is it genetic? Is it some inflammatory, immune dysfunction that maybe there can be something done about? My father has horrible neuropathy --not connected to diabetes (although he has diabetes). He has the horrible pain and headaches and also AS (which is thought to be autoimmune and also can be inherited). I agree, Anna ---I think everyone here will get something from this article. A little scary on the connection with the left frontal lobe and memory. That's where my meningioma is. And yeah, I have more issues on my right side and I do have the brain fog and memory problems that it talks about. Don't really want brain surgery at the moment though. LOL! Thanks for posting this. Issie

I wonder how many of us have had concussions in our lives - either before or after POTS. Did things get worse after the fact? Maybe, rattling our brains can cause some of the issues. Issie

That one worked. I haven't looked at all of it yet. But, I think that there is another thread that has this on there. Potluck has done a lot of research on the sun and benefits that it gives to people. He found that it is very helpful to him. You might look up his thread on this. You'd probably find it interesting. Issie

I forgot to add that I also felt that it triggered a bit of an allergy with me. Not full blown MCAS attack - but, a touch of that feeling of needing some allergy meds. Issie

I tried it too. Short term it seemed to help. Only issues I had was on day three started having some heart pains. I also believe that I got dehydrated with it. (That may have been what caused the heart pains.) I found on day one that it was like a near miracle. I didn't even qualify to have POTS. But, it worked less on day two and on day three - didn't work and had the heart pains. Stopped at that point. I think for me --it would be a very short term thing to use. If I especially need a good day for a special event or something. Instead of it increasing my hr - that normalized out and hardly had any tachy and could stand for a good long time without issues. Like Rama, not sure why this worked ---yet for short term. With me having high NE levels you'd think it would ramp up the system and cause higher bp and hr. Issie

Nicole, I can't get the video to pull up for some reason. Issie

Thanks for the response on the plaquenil. Right now we are attempting it with herbals, but holding that in reserve. Since there are eye issues that are genetic in my family - I'd really rather not take the chance with my eyes. But, we will see how things go. I think what I am doing is making a difference ---so that's a positive sign. Sorry, you girls are having all these issues. It seems we all are so complex. Hard to know which direction to go sometimes. Issie