futurehope

Andybonse, I do not get tachycardia, hives or rashes when sitting down. I have mast cell activation syndrome and POTS. Several times I have asked my MCAS why I do not get hives or flush, and could I possibly have MCAS without them? He has always responded "yes".

Avoidance. And in the case of your mother using some fragrance that caused a reaction, I would not have sat next to her or been anywhere where I could detect the smell. In my case, I have refused to "be nice" and remain near the offender. I have also refused to allow peoples' opinions of my behavior to alter my avoidance. Yes, I have had my husband and my mother on different occasions mention that my avoidance behavior was a bit eccentric. I am so past all that and I don't care what people think. I have to live in my body, not them. And I will do what I need to to remain feeling well and to avoid a reaction. People tend to take avoidance behavior personally, and they can feel offended. Well, you have a medical condition like any other, though it may be an invisible one if you do not pass out, but it is a reaction nonetheless with unpleasant consequences. There are others whose reaction can become life threatening. So, this is not some eccentricity on your part. It is real. Own up to your difficulties. Treat yourself well. Don't allow others opinions to dictate how you take care of yourself. That's my suggestions.

I've been having breathing problems of late and am so thoroughly tired of going to doctors, that I have chosen to make an educated guess as to what it is. In my case, I know I have a severe hiatal hernia, so I am guessing that might have something to do with my shortness of breath problems. With my diaphragm having a weak spot, it allows the stomach to push up into the chest cavity. I also will be seeing my cardiologist in a few weeks, and will discuss with him my problems. I also want to ask him about the beginning of pulmonary hypertension that showed up on my heart echocardiogram. Anyhow, I can relate to being nervous and not knowing what is going on. I've been this way for so long, and have not gotten any answers. It is tiresome going from doctor to doctor, so I am currently in the middle of a break from them all. But, I can certainly relate. I also would like to know what is going on, and have a doctor fix it if possible.

"How do I live my life?" By the grace of God.

The question "does napping make my symptoms better or worse" is not a relevant question for me. The reason is, when I nap, it is often because I must. I am very sleepy. As for symptom improvement....the POTS symptoms are with me whether I nap or I don't. Napping causes a different set of symptoms to emerge because my blood pressure has dropped. I wake up exhausted and I look pale and feel disoriented and dizzy. If I had somehow forced myself to stay awake, I guarantee I would feel bad because of that. So, I cannot really answer your question. The choice to nap or not is not a valid choice for me. When I must nap, I do. I once had a sleep study done because of my sleep difficulties, and after it all the doctor suggested I don't take naps and everything would be okay. Yeah, right. I tried that for about 6 weeks into I started becoming almost psychotic due to lack of sleep. In my case, forcing myself to stay awake was a recipe for severe sleep deprivation and the symptoms resulting from that.

Ditto. I do not want to lie flat. When I've had to for one test or another, I hated it. I, too, feel like I cannot breathe. I hate lying flat at the dentist. BTW, Jangle....I like the adjective you used to describe this condition...cruel. That's accurate. ETA: Not only do I feel like death after sleep or a nap, I look extremely pale. Not a pretty sight.

This post in interesting. I take a nap every afternoon. My blood pressure drops too low for me during the nap. I know, because I take my blood pressure when I wake up. It may be 88/60 or whatever. I feel like a dead person. So, for me, there is no "good" answer. I need the nap, but I can count on feeling dead upon awakening. Obviously, whatever method my body uses for regulating blood pressure, does not work too well. Yes, this problem is beyond words.

Brethor9, I can relate to your symptoms. It's been such a long time since I've felt normal, that I try not to think about it. I am in my new normal. Welcome to the rest of my life. Honestly speaking, I don't think any of us can say with certainty what the futures hold. Each of us is unique and each of us has their unique manifestation of disability. I am sure some people get better, just as I'm sure that some people do not. Until the medical community has more knowledge on the subject of dysautonomia, it is a guessing game.

I hope Dr. A has some answers for you. You'll be seeing him three days after I do.

Hi, If you want the discounted rate for a patient at MUSC, I believe you need to speak with the concierge at MUSC in order for them to book and confirm that you do have an appointment. I will be staying at the Holiday Inn Downtown Charleston- Ashley River. It is very close to campus and there is a free commuter bus to the campus if you can walk to a bus stop area outside the front door. We rent a car though. I got the room for about $86 though I cannot remember exactly without looking it up. The rate would have been much higher without the concierge doing it for me. Anyhow, this will be my 6th time to Charleston, I think. The hotel I am going to was formerly named the Best Western. It is not really "downtown", even though that is what the new name says. You have to take a free commuter bus to downtown if you want to go there, or drive, which is out of the question since there is no parking anywhere. Also, as far as I know Dr. A currently still sees patients at the Hollings Cancer Center on Fridays. But he also has a new location on Mondays closer to the airport. I will be seeing him at the Hollings Cancer Center on Friday June 28th.

Thanks. So you have tested positive for lyme?

Issie, if you come back to this thread at all....I missed your prior posts. How did you get diagnosed with the protozoa? I seem to have problems similar to yours and I need more information. Thanks.

Batik, the patients Dr. Esselstyn had in his study had coronary artery disease and were at the end of their rope. The interventional surgeries of stents and bypasses were no longer of use to them. The doctor had these very sick people go on a very strict diet. No oils ever in any form or in any thing no animal proteins - he does not even approve of egg whites or fish no fried foods The goal was to get the cholesterol to 150 or below, and the LDL's to below 80. Of the people who stuck with the diet, they slowed and reversed their coronary artery disease. I look at it this way: For years my body has been telling me that I do not handle fat very well. I don't feel great after eating meat. and I get instantaneous heartburn from fatty fried foods. I feel better without them. I also have elevated cholesterol and I know I have plaque in my abdominal aorta. I have decided to remove oils and meats from my diet. It seems the right thing to do for me.

Well. I bought his book and I'm going to find out what he eats. I suspect that soy beans are a large part of the diet. I cannot eat many "healthy" foods because I have painful bladder syndrome, so soy beans are out for me. I may not be able to do his suggested diet because of my food sensitivities. But I will find out more, read and experiment. As for no oil, that is relatively easy for me. I don't like it anyway. As for veggies without oil, I would assume that steaming in the microwave instead of frying in oil is what this doctor would want?

listened to the presentation am duly impressed bought his book to read what I really want to know is......is this dr. surviving on grains, beans and veggies? I cannot understand what he eats?

Good grief. Those sounds gave me a headache. Phew!

Yes, I have experience. POTS symptoms were made very much worse. I was constantly dizzy. As a matter of fact, I believe that my four month stint on this medicine made me permanently worse. I did not know that I had POTS at the time, but my internal medicine doctor felt it would be beneficial. (Maybe she thought all my symptoms were due to depression? That's the story of my life. I was a depressed person. Ha.) Remeron did let me "pass out" and sleep within 20 minutes of taking it. It made me gain weight rapidly to the highest I've ever been. Was it worth all this so I could sleep? A BIG "NO". That's my experience.

I don't know what to start a thread for? I was diagnosed with POTS first, then just recently with MCAS. MCAS is a relatively "new" medical diagnosis. Only a handful of physicians really understand anything about it. People with MCAS can have many different symptoms, too numerous to mention here, because the degranulation of mast cells has the potential to affect different functions of the body. I was speaking of my own experience on benzos, which occurred before I knew I had MCAS. I felt the best while on them, but I refused to increase the dose to maintain the benefit. Also, benzos can cause depression, and I didn't want that problem. So, I stopped them. It wasn't until years later, after seeing my current doctor, a mast cell specialist, and doing extensive reading on the mast cell forum, that I realized that benzos can be beneficial for mast cell patients. That was the case for me, and my current (MCAS) doctor was willing to let me reintroduce them, but I refused on the grounds I previously mentioned. Anyhow, I don't profess to be an expert on all this. I am just relating my own experiences. When the original poster mentioned sensitivities to supplements and other things, I was reminded of myself. I felt that sharing the little I know may be of benefit to someone else with multiple unexplained symptoms.

If you have an underlying case of mast cell activation syndrome, the benzos might have been helping while you were on them. Then after you started withdrawing benzos, the underlying problems resurfaced. Maybe. Just a thought. All the sensitivities you mentioned, to foods and such, remind me of myself and others on the mast cell forum. That's why I am tossing this idea out to you. I have mast cell activation syndrome and POTS and I know that the best I ever felt was on the benzos, but I did not want to remain on them, as it seemed I would need more and more to get the same effect.

RichGotPots, I am so sorry for the difficulties with getting help for your breathing problems. Have you ever been evaluated for Mast Cell Activation Syndrome? Just curious. I remember reading an article my mast cell doctor wrote, quite lengthy, and in it he lists one manifestation of MCAS as shortness of breath. It has something to do with constriction of something inside the lungs, but not enough to show up on pulmonary testing. Do you have other systems affected in your health, such as the gastrointestinal system, the nervous system, the skin, etc......if mast cell activation is involved, there is a good chance that more than one body system is involved. That's why I am asking. Sorry if someone mentioned MCAS to you in the past. I have not read all of your posts.

The following has my doctor, Dr. Afrin, as the lead author. It contains a lot of info, probably too much. In order to be evaluated, there will have to be some money spent. Otherwise, you will have to frequent a mast cell forum and learn the ropes from there. There are some OTC meds that might help. https://www.novapublishers.com/catalog/product_info.php?products_id=42603

Go, Angie! We need to raise awareness.

Lynnie- for exercising, I had done Dr. Levine's exercise program. It is 3 months long. I then continued exercising. I do 45 minutes/day at 3.5 MPH on the treadmill. If I cannot go to the fitness center, like today, I walk around my house for a while. If I had paid attention to my tiredness for the past 14 years, I would have done nothing at all. I am always tired. Nothing new there. Actually, I'm frequently exhausted. I feel like I cannot give you any advice as to what to do because everything I did, I had a doctor behind it who had tested me and monitored my progress. I had heart tests before beginning, for example. Some thoughts: I did experiment with a compounded Cytomel (without the additives) that had a "time release" chemical added so it would not be in my system all at once causing heart palps. So, I really did try everything for one half a year. It fixed nothing, and caused me diarrhea. So, I stopped it. Also, take your hormone on an empty stomach away from calcium or antacids or other medications. I'm sure you know that by now. Everything we take, supplements, meds, estrogen, can affect our use of the hormone. Also, I will only use name brand Synthroid. The others I do not trust. Believe me, I was very upset that my FT3 was at the low end, and my FT4 was at the high end. I felt terrible as well. I still do. I also suffer terrible hair loss. I do not have any answers. I just wanted you to know how much time and energy I put into experimenting with this with no results. Apparently, whatever else is malfunctioning in my body, it is affecting my use of thyroid hormone as well. Dr. Afrin , my hematologist for MCAS, thinks my MCAS plays a role in my body's problem using Synthroid. Who knows? It is all very frustrating.

Lynnie22, I, too, have no thyroid. I had mine out for cancer 41 years ago and I am totally dependent on exogenous hormone. I was diagnosed with POTS in 2002. I was diagosed with MCAS in 2012. I know exactly what you are talking about with the FT4 being at the high end of normal, the FT3 falling to the low end, and the TSH all over the place. I have seen three different endos because of this. One allowed me to experiment with exogenous Cytomel. I won't go into everything I tried, but I found no benefit. Surprisingly, after pursuing answers for why my FT4 and FT3's did not match, this past test I had three months ago, everything turned out perfectly fine.....for the first time in years. And......I have no idea why?! Maybe it is because I now exercise 5 days/week. Maybe because I'm taking many antihistamines for MCAS? I really have no idea. But I personally hit a dead end with "correcting" by falling FT3, and mercifully, it corrected itself. We are at the mercy of the exogenous hormone, and as such we are at a decided disadvantage when our bodies do not convert the T4 to usable form. I do believe it affects us adversely. Having my hormones more normalized has not cured me of anything I have though, as all my complaints are still present. I wish you better health and better days ahead. I can relate to your issues.

I thought that the advertisement for raspberry ketones said that it affected blood sugars? I don't know much about this. Anyhow, it is possible you may need to speak to a nutritionist to make sure you are getting all need from your drinks. For example, from where are you getting proteins and fats? Other than that, I don't know enough to comment.