futurehope

I am not a doctor and cannot tell you what your doctor wants, but I do not recall getting off of anything for my Holter monitor.....but, then again, maybe I am forgetting.

Hi, all, I may be interacting with you more in the future in regards to gluten free as my allergy doctor broadly hinted that gluten is one of those items that has the potential to create many difficulties, and that he thought I might benefit. I am not looking forward to it because I do not think it is easy. I also think it is more expensive and requires more meal prep which I do not like. I'll know more what he says after my FU visit on Tuesday, but I fear I may be joining the GF folks. I hope I can keep my weight on, on this diet. Right now I'm getting too thin.

I saw a rheumy about my dry mouth and lack of sweating. All bloodwork turned up negative as did an ultrasound of my salivary glands (negative for appearing as Sjogren's patient, anyway). I have decided against a lip biopsy. I do not want to risk any medicines that they might have for this anyway, so why risk having a biopsy. For now, it is not worth it for me.

For whatever reason (I don't claim to totally understand), my Mast Cell Activation Syndrome doctor believes that the underlying cause of my multiple disorders, including POTS and IC among others, is mast cell disease. Apparently my mast cells degranulate without a necessary or normal reason, causing mediators to be released into my bloodstream. This, in turn, causes various parts of my body to malfunction. I do not totally understand this, but my doctor thinks that if you have several different systems malfunctioning, there is usually an underlying cause for all of them (unless you are extremely unlucky). In my case, he thinks the common mediator is malfunctioning mast cells due to genetic mutations. Now, whether the genetic mutation is from birth, or acquired from the environment??????? I don't know.

I was on a low dose for a while because it supposedly helped with hair loss. It tends to lower blood pressure so my POTS doctor thought that it was counter-productive for me to be on it. I've since stopped. Not sure if my low dose did anything for POTS except make my blood pressure a bit lower, which I do not need.

"how are you?" fine If for whatever reason, it is not in my best interest to continue the discussion, I answer "fine". Believe me, most people are not that interested in hearing about my daily struggles. They have their own. It might not be their health, but they have their own problems.

Yes, I seem to have fatigue issues. I am finding out that in my case one potential cause is the medicines I am on, specifically my very strong proton pump inhibiter for reflux, Dexilant. Also, antihistamines I am taking can cause fatigue. I am saying this because I had stopped taking many of my meds for varied reasons, and noticed immediately that I felt alive, human, with-it, and normal. Unfortunately, the saga continues as I was unable to stay off of the Dexilant. Do not underestimate side effects of medicines. Also, I suppose you know already that your thyroid may not be producing enough. Anyhow, I hope you can sort it out soon. Not fun.

Kay1027, I have the same reactions as you. I exercise and probably will continue to, but do not notice that it helps, or that I can do it anywhere near as easily (without the rebound fatigue) that I could 30 years ago. I always say, the exercise has allowed me to exercise, but has not cured my POTS. My body is malfunctioning and no amount of exercise cures it. But...........there are a few things a bit better. I can exercise vertically and for longer periods of time than I used to. My resting heart rate has decreased somewhat. I do wonder if I am injuring myself by pushing and doing what I do? Oh well. I don't know.

I take extra good care of my teeth because of my dry mouth. I have had several root canals, along with infection after a tooth extraction, for which I needed two courses of abx. For me, when questioning whether to have a tooth with a rotted nerve removed, my answer will always be "yes". I would not want to fiddle with a dead tooth which has rotted material in it. The root canal cleans it out and allow the hole to be filled with an inert substance. This allows the tooth to be saved. Your best bet is to take as good care of your teeth as you can, not allowing food to remain on them, and to have regular dental visits with cleaning, and yearly x-rays. I have no worries about taking care of my teeth and the potential of causing other health issues by doing so. If your teeth are not taken care of, that can affect your health for sure.

Since this thread has taken a turn towards gallbladders, I'll add my two cents. I had my gallbladder out because of thickened walls, which denotes inflammation or malfunction. I felt pain every day from it towards the end, no matter what I ate. I did not have stones in my bladder. It probably was not functioning though. I have no regrets. I do not like the idea of walking around in pain and avoiding fat. I'm saying this even though my reaction to the surgical meds was a nightmare. I have MCAS and am sensitive to anesthesia and pain meds. They make me extremely ill. So, in my case, I do not have my gallbladder, and I do not care. It was doing nothing but causing pain.

What is this doctor's specialty? When you spoke to the office, did you speak to the doctor himself or the receptionist? Did you ask about the doctor's experience with "postural orthostatic tachycardia syndrome", "dysautonomia", or did you just say "POTS"? The answers to the above questions would help me know whether this doctor and you are really discussing the same thing. There is some sort of a POTS diagnosis that has to do with tuberculosis.

Hi, Ana! Great news! I'm still on my POTS, MCAS journey and have not improved enough to talk about it. I exercise daily for 40 minutes - 1 hour with a treadmill and weights. So far, no improvement. I'm still way more fatigued than I would like to be. I am beginning a benzodiazepine soon to see if I benefit. All in all my life from beginning to end has been a deterioration. I used to have good times in between the attacks. Now, I have some symptom or another daily. But I have never lost hope. I'm working with Dr. Afrin now with the benzo. I love to hear success stories. It is difficult to know exactly what caused your improvement, whether it was all your things on your list , some of them or none of them. Time does help until you get older like me (I'm 61 yo) and the "good" times become more scarce. I'm able to life my life, but suffer from debilitating fatigue and weakness on occasion. Keep up the good work. I hope to have a similar story to yours soon.

My mast cell doctor and I are beginning an experiment with benzos with me. I had told him that in the past that a benzo had helped my POTS symptoms, but that after a few weeks, I would notice a "wearing off" when it came time for a new dose. This made me nervous about developing a dependence, so I stopped taking it. I am very willing to try different benzos, and will be starting with Ativan 2X/day at a very low dose. I will do this because I have been suffering with my medical complaints for years and it was only recently that I was diagnosed with MCAS and I now have a knowledgable doctor. With an obvious worsening over time, I am willing and able to experiment again. Apparently, mast cells have benzo receptors, and some MCAS patients respond well to them. Different people respond to different benzos, he told me. I hope I can return to the good response I had to them before, without developing a tolerance. I'll let you all know how it goes.

I was at Charleston in July and Myrtle Beach in August. Not good. 30 seconds outside in it and I would quickly deteriorate into a "weak" attack. I would feel too fatigued to talk, to move, to do anything. There is nothing to do but to prevent it. I blame it on my mast cell disease, and that my mast cells trigger in the heat. I am useless in heat. If I am very lucky, I can get myself wet and stay that way before having a meltdown. Avoidance is the key. If I did need to remain outside in it, I would wind up on a stretcher at the ER.

I do not think anyone on this forum can predict your response to exercise. After 6 months of Dr. Levine's program with an additional 3 months, for a total of 6 months, my rhr is 77, so you are doing better in that area than I am. Then again, I'm 61 years old.

Well, if I compare my exercise ability from six months ago to now, it is obvious that I am capable of doing more exercise for longer intervals. Doing exercise allowed me to have more periods of orthostatic tolerance, meaning I was less dizzy and capable of sitting and standing for longer intervals than before training. For me personally, I feel exhausted lately. Maybe I have been doing too much exercise for me? As time went on, if I wanted to increase my heartrate to the correct exercise zone, I had to increase my incline or go faster. IOW, my heart was getting more conditioned, so I needed to do more and more difficult stuff. I do not think I have cured anything. My ability to sit/stand has improved. I cannot do the "normal" exercise I did when I was younger as I seem to tire more easily than I should. But........my heart is in much better shape. I wish I knew the cause of my fatigue. I mean, how much exercise can I tolerate in order to now get my heartrate up to the zone (?)......not enough, is the answer. I can only tolerate so much. There is a limit to my body's ability and that's a fact. Maybe it's my MCAS causing this? Maybe I have an autoimmune thing going on? Though nothing shows up on tests. Wish I knew. So, I'm doing my best. Now that six months have passed, it will be a challenge for me to maintain what I have worked so hard to achieve. I am not sure exactly how much exercise I should do each week or how challenging it should be, and the time I should spend doing it. I'll see. Meanwhile, I had gotten myself in the routine of getting up from 4:00 - 4:30 AM in order to hit the gym before the summer heat. Now that the temperatures are coming down, I am finding it difficult to sleep in even though I do not need to get up so early. So, off I went at 5:30 AM again, though I'll probably exercise, come back home and go back to sleep. Crazy.

I found it very difficult, but I did it. I must be a masochist.

You can't find it anywhere. He only shares it with people who are in his study. In my case, I was too old to officially be in his study, but he sent my cardiologist the program, who then shared it with me. You have to be under the care of a cardiologist or a physician who is willing to monitor you. Dr. Levine will share the program with them.

FYI, I will be 61 years old in a few days, and I have had severe POTS symptoms, that necessitated withdrawing from the workplace since 2003. I have had strange symptoms and problems throughout my life but I finally obtained a medical reason for much of my suffering. I was diagnosed with Mast Cell Activation Syndrome this year. After a cardiac work-up, I was given Dr. Levine's three month exercise program that he has suggested for POTS patients. Dr. Levine is a cardiologist. After the three month program, I was given an additional three month suggested cardio work out (by Dr. Levine's office) which was not part of the study. The goal was to increase my cardiovascular fitness. In this post I will share my thoughts now that I have doggedly and religiously followed a cardiovascular fitness program for six months with no let up. They are my thoughts about my experience. Hopefully, they will be useful for someone else, but are not meant as a suggestion for others to follow. This post is for informational purposes only. I was extremely motivated, regimented and disciplined in how I approached this. I began in March of 2012. As the weather got warmer, and the second floor of my fitness center (where the cardio equipment was) became increasingly uncomfortable, I had to come up with ways to continue. Being hot makes me extremely ill. I have MCAS and I do not handle heat well at all. Once the temperatures were up there, I took it upon myself to wake up very early in the morning, and arrive at the fitness center by 5:30 AM, opening time on weekdays, or 8 AM on weekends. I found out the hard way that at 8 AM on the weekends it was already too hot for me, but I doggedly did what I could, sometimes with bad effects. I took three bottles of water, two at room temperature, and one that had been refrigerated. I drank constantly throughout the work out. If I was smart (again, this was learned the hard way), I prevented heat exhaustion and MCAS degranulation by using the refrigerated bottle as a "cold pack". I would touch my forehead, back of neck and face with it to help my body keep cool. It helped immensely. I found out the hard way that I am unable to drink refrigerated water while I am very hot because I get bad intestinal cramps from doing so. Most weeks I was at the fitness center for 5 or 6 days. Weight training was twice/week, usually with 3 - 4 days in between. If I had enough stamina, I could append the weight training to after the cardio work out. I went out of my way to avoid illness, as any illness would set me back quickly and necessitate falling back. I avoided people with coughs and colds as best as I could. I used disinfectant wipes on my cardio equipment before use, and disinfected my hands by using a bottle of gel I keep in the car at all times after each work out. Every day, whether that was a weight training day or not, I did sit-ups on the equipment. I also did back exercises which involved leaning over a saddle with my feet held in place on the equipment so that I had to use my back to bring my torso up from leaning over. At the beginning of training, this exercise made me very dizzy and was extremely difficult. I still do this one only 10 times. I started at 5 times and very slowly so I would not pass out. I also hang on a piece of equipment by my forearms, and do leg raises to the 90 degree position and slowly lower my legs so as to work the lower abs. This exercise is done every time I am at the fitness center whether it is a cardio day or a weight day. All this was extremely difficult.... I dare say, more difficult now that my body is malfunctioning. The sets backs happen rapidly. The gains are slow and difficult. I am still an ill person that has poor stamina. I still require much rest and sleep. I try to avoid chemicals and preservatives in my food. I try to avoid sugar-laden junk foods. I cannot tolerate heat and will douse myself with water and stay in the shade or avoid the heat at all costs. This program was no cure. It enabled me to have goals to feel that I was working towards a possible improvement. I would say after all this work I am partially improved. I can stand for longer periods. I can work out for longer periods. But, standing still and standing in the heat will still be uncomfortable. It was mentally challenging and physically difficult. But, I did feel like I accomplished something. What it is worth in terms of my health? I really don't know. It will be interesting to see what I decide to do once the six months is up to maintain my accomplishment. This will happen at the end of next week. I am able to jog intervals. The last one I did this week was after warming up, I did 10 2 minute slow jogs with a one minute rest in between. There is a long cool down and recovery done after this. I can stay on the equipment for 60 minutes, but it is tough and tiring. Now I know the full meaning of WORK out. It is hard work. So, I do not feel cured. I feel like I can be set back rapidly, more rapidly than if I were functioning normally. I am doing the best that I can with what I have realizing that there is no magical cure here. I strive. I fail. I try again. I live. I have no idea what I am going to be doing for maintenance here on out, but I do feel like I deserve an Olympic medal for pushing and striving through a very challenging six months. I wonder if all this has done my cardiovascular fitness any good? I suppose, but maybe I was harming myself? Anyway, all for now. I thought someone out there might be interested in my escapades.

@Jangle, I had no idea that positive Achr antibodies were associated with POTS. Mine have been elevated for years, but my neurologist and the testing they did on me do not show evidence of Mysathenia Gravis. I am wondering why my neurologist never told me they are associated with POTS? Is this a recent finding?

I have been diagnosed with MCAS. It is the only syndrome that explains the varied symptoms I've had over many years-----so much for POTS gets better as time goes on...... I cannot wait to find out which medication regiment keeps me feeling best. It is exciting to realize that we are on the cutting edge of identifying the cause and the help for many disorders. I am glad to be a patient of an MCAS specialist.

@ Issie, Your post is a gold mine. Thanks. I have MCAS.

Dr. Afrin told me the same thing, that benzos bind mast cell receptors. Bind them from doing what? I have no idea how that explains why it makes me feel better? If I feel like it, I'll ask him next time.

Klonopin was the only medicine that made a noticeable difference in my POTS symptoms. They vanished. The problem is, after taking Klonopin for two weeks, I needed more of it or insomnia would set in. To get off of them I experienced insomnia for days. So I'm not taking any now because I refuse to get myself in a situation where I would need more and more or else get more and more nervous with increasing insomnia. If you can take this continuously with benefits, you're blessed. Enjoy! Wish I could keep taking them. I can't. I've told every doctor I've ever seen that Klonopin was the only thing that noticeably helped me.

I know what you mean with the frustration of thinking a recliner should be fine, but it isn't. I have the same issue with a reclining car seat. All I can think is, the recliners that do not work have my heart level too much lower than my head level. When I do my own reclining on a sofa, my chest and heart are almost on the same level , whereas, in many seats that recline, my chest and head tend to be more at a 90 degree angle. Also, my butt has to be closer to my head level than it is in a reclining seat. What a pain.