futurehope

I have no idea if I'm helping or hindering, but I personally decided that I would exercise to the best of my ability.(I did before POTS as well) Muscles need to be used to retain their ability to be used. It helps being able to stand a bit longer than if I never did any exercise at all. That being said, it certainly takes its toll. For me, I can have several reactions to exercise: a mild fatigue, a "I have to take a nap" fatigue, or a definite need to eat something (to get my blood sugar up), to a delayed reaction where I'm no good for days. My father may have had POTS. Since nothing was known about it then and they told him there was nothing wrong with him and it was all in his head, his reaction was to literally stop moving. He basically lead a very sedentary life for 40 years and lived til 86. Who would have thought? But, since I desperately want to be able to live with the ability to do something, other than sit around, I push myself. Though, I have to say I have been able to tolerate less and less exercise as time goes on. For me, it is definitely a better self-esteem thing. Once I actually do something, I'm so happy that I could. I have a difficult time accepting myself as a total invalid (which I can be, at times), and prefer to see that I'm capable of something.

This is the fear I have, as my friend's doctor's never wants to touch her for fear that it would interfere with the psych conditions, and so she hardly ever gets help for anything unless it's very obvious from a test that she needs something. The doctors are afraid of causing a worsening of psych symptoms. As it turns out, her psych symptoms are poorly controlled, probably because of other underlying conditions, so it becomes a vicious circle with no end in sight, and minimal help. I feel really bad for the situation you are in and I can totally understand how difficult if must be. Blessings to you.

Several people on here have mentioned that depression can go along with a chronic illness. I can agree with that. The problem is, I have a friend (former nurse), who has a psych diagnosis along with fibromyalgia. She also suffers from chronic fatigue, sleep disturbances, etc. Since I'm familiar with her case and her escapades with doctors, I can tell you it scares the daylights out of me to even have a psych diagnosis put on my chart. They always see that she has that, and then attribute her complaints to her psych diagnosis and rarely look into an organic cause. It's difficult listening to how she gets brushed aside. Secondly, any time someone has tried me on antidepressants, they made me ill. As a matter of fact, I suspect that when I pushed myself through a 4-week stint of Remeron back in 2002, I gained a lot of weight (now that's depressing), and my POTS had worsened. So, even if I do go to a counselor and talk, instead of taking medicine, I'm scared of the diagnosis on my chart. Do you have an opinion? Thanks in advance.

Yes. I have been called Green many, many times. More green before I was diagnosed and put on meds. Its funny, I couldn't see it, but people completely independent of each other would bring it up. I had never heard anyone on this board say the same thing. I wonder what it is that causes the green mask? My labs are cooking right now for Myesthenia Gravis. A positive result would explain so much. It would really explain everything. Does anyone have this and POTS? They seem to be very closely related. I wonder if we all have a MG and Shy-Drager variant that hasn't been named yet. I describe it as everything in life feels like a treadmill at an extreme incline. My doc describes it as walking in sand. I think of it as living in sand! Does anyone know if MG is corellated with POTS by any chance? Kitsa I have consistantly tested positive for Achr antibodies. Now, the interesting part to me is when they did an EMG test, ran a CAT scan on my thymus, and did the usual neuro testing, I came out "normal". I'm starting to think that "normal" in my case is extreme fatigue. If I have a variant of MG with extreme fatigue, I cannot say that I have "flares" as such, since my fatigue is always there with some good days interspersed. Morgan, I can so relate. My exhaustion can feel like the actual "chore" of breathing is too much. I did try Mestinon once using the liquid form and a dropper in order to titrate up to a normal dose. Even the very little medicine dropper amount gave me a headache and I couldn't wait for it to wear off. Needless to say, I didn't want to try that again. I'm convinced that something isn't right and the doctors do not know enough yet how to correct the problem.

FWIW a doctor told my very thin 5'10" daughter that his mother could not gain weight for most of her life until they discovered that she was gluten intolerant. It was only after she stayed on a gluten free diet that she could gain weight. I thought that was interesting. Obviously, I do not know each of your stories', but I thought I'd relay the info in case i could help someone.

I sometimes feel "hot" when I've been trying to be vertical for too long. I always assumed this was an adrenaline surge, my body's response to being under stress. When an MCAD person feels a flush, is that the same thing or something different. Thanks in advance.

When I'm shaky, it means I'm trying to do more than my body is capable of. I finally had to leave work because I knew I would not be reliable. It became impossible for me to keep up the facade of being okay and doing my job, when, inside, I felt like death and didn't even know if I could make it to the car after work. Do you need to work? Can you cut back your hours? There are no easy solutions, but you gotta do what you gotta do. If you want to be layed off rather than fired, then you're going to have to do it. However you can. I wish you the best and I hope you can come up with a workable solution.

I wonder if you can move around in them, or do you need to stay in one place?

I can so relate. You wonder how a body survives being as everything is so difficult? Obviously, something is not working right?! It's like being 87 years old in a younger looking body. Do you tend to look "gray" or "pale" when you're really tired? Just wondering.

I do feel sorry for my spouse. He comes home from work, and by then I'm definitely reclining on the sofa. If he didn't make dinner, I'd probably resort to canned or prepared foods (yech). I'm sure it is very difficult on him to come home after working a full day and commuting 35 miles to see a "slouch". I do my best after waiting a while after dinner to get up (I wait so I won't stand and get dizzy from having my blood pooling in the abdomen for digesting) and do the "final" clean-up in the kitchen involving the dishwasher, trash, counter cleaning, only to collapse back down. Half the time I'm ready for bed by 7:30 PM or fall asleep on the sofa if I don't get upstairs. Don't even try to hold a conversation with me when I first get up in the morning! I'm too tired to respond or to think of an answer. Walking takes all the energy I have at that moment. Interestingly, I thought chronic fatigue people improve over time. Well, I'm definitely not in that category. Do any of you feel worse, better, or the same as you did 5 years ago? Or is it too hard to tell?

Oh please PM me the name/phone # of this nutritionist. I'm so ready to think outside the box. Thanks a million. Ernie, you're a trooper and an inspiration. Thanks for your response. I can relate.

I definitely will discuss with my doctor getting bloodwork done for sure. All you responders are like this every day? This is unreal. It's almost like watching every one else "out there" living their lives, and I'm just trying to get up, wash my face and take a shower. I'm going through the motions of life but my brain is really too tired to think or to be engaged. Actually, thinking is too tiring as well as activity. We are quite a bunch, here. Unbelievable. Only you could understand what I'm saying. Well....I'm going to tell myself my usual pep talk.......Tomorrow is another day. I may be much better tomorrow than I was today. I never know from one minute to the next what I may be capable of. Phew...subsisting...I'm just going through the motions. Well, I do the best I can and that's all I can do for now. Thanks for listening. (And it was a beautiful day outside, too. You would have thought all that beautiful solar energy would have worn off on me? Oh well. Not to be. Tomorrow's another day.) It's been a real long time since I could actually plan to do an activity ahead of time, and look forward to it, instead of becoming anxious that I might not be "up to it". Plans fill me with anxiety and dread since I have no idea how I'll feel when the time comes. Yep, my old life has gone the way of the dodo bird. Guess I better head to bed. Thanks.

This is ridiculous. I spent about 9 hours sleeping last night, and I had to do my usual self-talk "C'mon you can get out of bed. C'mon, it's time to wash the face. C'mon walk the dog." etc etc. It is a constant battle to move and do anything. I tried to do some of my weight-lifting and stomach exercises, and I just didn't have enough energy. These I do on the floor, BTW. Go take my walk in the mall? Seemed like a joke to me even though it was a perfectly beautiful day. I did manage to do my laundry, but anything else? Forget it. This fatigue/exhaustion is ridiculous. I got so desperate that I whipped out a 5 year old Midodrine pill, took 1/2, and noticed absolutely nothing. The pill is expired and probably lost its potency. I was seriously thinking of downing one of my old methylphenids (Ritalin), but decided on the Midodrine instead. My day was wasted contemplating why I didn't feel like doing anything, and how much emotional strength and willpower it took to do anything. I was also contemplating that I have a hair appointment tomorrow, and I was wondering how I was going to manage that? Do I have chronic fatigue on top of the POTS? I will be discussing this with my doctor, of course, but this feeling "dead", is such a waste. Good grief. I might as well be 84 years old. I certainly feel like an invalid. Opinions please.

After spending over $400, I could not get used to them. They now sit in a drawer. I could not stand them no matter how much I tried to use them. They made me dizzy, gave me an awful headache, drove me nuts when I had to turn my head so as to look directly at something (instead of looking sideways).......you get the picture. I don't know how anyone can stand them.

I am sensitive to some smells. The first time I used the self cleaning feature on my new oven, I had an attack. I also experienced symptoms, while driving, after using an oil based solvent on my car mats. I use mostly unscented products and I have given up on perfume just to prevent symptoms. With MCAD, symptoms to even the same trigger can vary greatly. The unpredictability is tough. I have had allergic reactions to some medications, like sulfa drugs, nexium, erthromycin, biaxcin, and most recently turmeric. Are these issues similar to yours? I was asking because I do not have the "usual" flushing (except for 2 attacks) or hives, but I am sensitive to chemicals and odors. I can get an instant headache. I did not used to be this way. As a matter of fact, I used to love to wear perfume. Now, if you are anywhere near me with it on, I'll leave. I would love to talk to an MCAD doctor and get their "take" on my symptoms. Thanks again for all your input. Do you live near Boston or did you travel far to see your MCAD doctor?

Are you sensitive to chemical smells such as perfume and hairspray? Are you sensitive to new medications? I was wondering in light of the fact that you said you had MCAD. Thanks in advance.

Thank you so much again for your response. I certainly can relate to the blood pooling. I've only had 2 "episodes" that I remember during which I flushed, got severely woozy, nauseated, sweaty, unusually fatigued all at one time. Not fun. I have no idea what precipitated them and when I asked doctors, I got no response. I was convinced I was dying. I, too, am thinking of switching the timing of when I take my raniditine. I currently take it before bed but am convinced it's causing ridiculous dreams. But it really helps the nighttime acid. You're lucky you do not need to take a PPI (like Nexium). I'm convinced it adversely affects my CNS. Maybe, if I'm lucky, I can control my GERD with a second dose of ranitidine in the AM. TUMS is ineffective for me. Yes, the Atarax causes grogginess, but the stuff is like gold to me. It gave me my life back. I take the Atarax before bed. I can exercise, but still have more trouble sitting or standing still than I am comfortable with. My fatigue level is also very poor. I'm very glad to hear of your success. Do you live near Boston where your MCAD doctor practices? Do you take 25 mg Atarax at night? Thanks for your time.

I really appreciate your response. I've always told the doctors that there HAS to be some correlation between GERD, upset intestines, POTS, IC. Everything seems to be in a state of inflammation, so it seems logical that there is a cause. I see you take twice as much ranitidine as me. I take 150 mg and you take 300 mg. Is that two pills/day at 150mg each? I also take 1 Nexium/day for GERD. I WAS on Singulair once, but noticed it affected my ability to sleep. The doctor didn't believe me, but it's true. I had asked my allergist about MCAD, and he just looked at me and gave no response or opinion. I also get allergy shots once every two weeks and I notice I feel much more tired the day of the injection. The allergist had no response to that either. My IC is MUCH better on my prescriptions than off. Much. So don't pity me. I'm a success story with that. I did ask my urologist last week what he thought of "mast cell" problems as the cause of IC. (He's a researcher, BTW). He answered, that mast cells were "the rage" back in the 90's, but other than that, he left me with the impression that theories come and theories go. Whatever?! I do know I'm much better. What I would really like to know is WHAT, if any, symptoms of POTS have you noticed a lessening of since using the H1 and H2 blockers?

I've been reading with interest your posts about MCAD. I do not think I display those symptoms mentioned for MCAD. But I did a quick Google search on methylhistamine in urine, and one result of the search was WHAT foods to avoid before a test of the methylhistamines in the urine. What is interesting to me, is that ALL the foods mentioned (to avoid), are on a list as to what to avoid if you have interstitial cystitis (IC). I have IC and I need to be on hydroxyzine HCL 25 mg daily. I also happen to take raniditine 150 mg daily. It is obvious to me that there is some connection between mast cell activity and IC. Maybe all this "histamine/mast cell" stuff is contributory to my POTS as well as the IC? Do you have any opinions or questions to ask me to see if a specialist could help me with my POTS nad IC? Thanks in advance.

I'm really happy that you had a good experience. I have a difficult time reading your account, though, as there are no capital letters, sentences, periods or commas or spaces. Is this how you write when you text message? I don't text so I wouldn't know.

I did not feel well drinking it, even though people were saying how good it is for you. So, my POTS may be like yours. too much nitric oxide?

I suggest you take it after 5 minutes of standing as well as after 1 minute. Us POTsies do NOT go back down after standing up.

In my opinion, I have found that my body "knows" it's fighting something before I do. In my case, I've encountered a "vertigo" attack of 1-2 second duration, a few hours before the onset of a illness. My own conclusion is, the autonomic nervous system is already reacting before outward symptoms are displayed. Maybe, in your case, the "increased" autonomic response (maybe it's adrenalin, but that's a guess?) is helpful. Too bad you have to "provoke" your ANS with a germ or virus in order to decrease your symptoms.

First of all, when a doctor asks if you smoke, he usually means "do you currently smoke? So, I do not know if your doctor meant the person never, ever smoked, or that they do not currently smoke? I smoked off and on, intermittantly, in college. Anecdotal evidence needs to be tested. Other than that, let's see what others say.

How was MG ruled out in your case, if you don't mind my asking?