michiganjan

I have POTS, chronic fatigue, and am 58 years old. I take a Centrum Silver every morning along with Cerefolin (folate for the brain), Cal/Mag/Zinc, and extra vitamin D, and in the winter, extra C. The C in winter is preventative for colds, the Cal/Mag/Zinc plus extra D is preventative for osteoprosis.The Cerefolin is prescribed by my POTS doc for mild forgetfulness and memory loss prevention. Does the Centrium Silver help with my fatigue? I don't know, because I am not going to stop taking it in order to find out. A person with POTS still needs the same kind of maintainence that a person without POTS does, so I take the daily vitamin. I have read that some people with POTS find caffine helpful for fatigue. I have the hyperbeta adregenetic form and I avoid caffine completely because it causes me palpitations.

If it gets too bad, I take part of a xanax.

I used to meditate but always in the lying down position. I finally gave it up because it was just too disturbing to be in a lovely meditative state and then have a big surge, KERBLAM! go through my body like a lightning bolt.

To Emily, Dr. Grubb prescribed 60 mg tablets and told me to take 1/2 tablet twice a day to start. In the letter he sent to my doctor, it says the dose may be titrated up to 180 mg per day (3 whole pills). He did not say I had to get to 180, rather that I could go that high. 1/2 tab = 30 mg. so his recommended starting dossage is 60 mg per day, broken into 2 30 mg doses. I, however, chose to start with 1/4 pill (15 mg) in the a.m. for a week, then I went to 1/4 twice a day for a week. Tomorrow I will start taking 1/2 tab in the a.m. and 1/4 in afternoon. I that works, I will bump the 1/4 in the afternoon to 1/2 and I will achieve Dr. Grubb's starting dose. I know my own body and even though Dr. Grubb's instructions already factor in starting low and slow, I am taking it even lower and slower. Experience has taught me that my body is more apt to adjust to a new drug and I will experience less side effects if I do it my own very very very slow way. To Lisa, I have read that some who do well on the regular Mestinon do not always do well on the timespan, and others like the timespan. I think you have to experiment, just as you are doing, to see what works best for you. If the timespan is an entire day's dose in one time-release pill, and if your metabolism somehow manages to use up most of the pill right away, then you would have too much and get side effects and maybe not enough drug later. Jenn, I do not like to try new meds, either. So far the only thing I have experienced that I might ascribe to the mestinon is vivid dreams. They are not nightmares--some are quite silly. They don't bother me. Funny thing is that I have an occasional eye twitch just above my left eye. It has been there off and on for a few weeks now. HOWEVER it started about a week before I started the Mestinon, so it is NOT a reaction to the drug. That occasional twitch is still there. I am so glad I did not start the mestinon a week earlier because then the eye twitch would have started and I know I would have assigned it to the mestinon, and I would have been wrong. I think you are wise to wait until you are over the stomach bug. Whether or not you want to try the mestinon should depend on whether or not you need help with your POTS symptoms. If you really need them to be better, then you won't get there unless you try meds. According to Dr. Grubb mestinon has been like a miracle to some POTS patients. You may have to try several different meds to see what helps you. My ridiculously low and slow program is how I cope with the drug trials. I have managed to try lexapro, clonadine, wellbutrin, and others, and get up all the way up to a therapeudic dose and stay on it long enough to make a good assessment of several drugs. I am happy that I went through the process for each drug, because I now know a whole lot of things that don't work. I also know that a beta blocker is very helpful. Since my POTS requires more help than just the beta blocker, I continue in my quest to be as high-functioning as possible. I am so happy I have all of you as companions in this latest experiment.

Hello to Lisa, I am still on Mestinon. Taking 1/4 pill twice a day now, up from 1/4 pill once a day. I know this low dose probably isn't enough to help with the POTS, but I am having very vivid dreams. That is a change for me. Also, still constipated. I am planning on increasing to 1/2 pill in the morning and staying at 1/4 at dinner time tomorrow. I am going so slowly, but will am tolerating it so far, so going slow has been useful. How are you doing with your trial. Keep me posted. I will report back when I get this next increase underway.

Dear Mighty Mouse, Since I consider you an expert on the maintainence of sinuses, I hesitate to suggest this, but have you tried Mucinex? I am sure you know about using guavisin to thin the mucus to keep it moving. The Mucinex I have is time-release and can be taken 2 x day with lots of water. If I wake up with a "sinus head," I take one and then another one that night. This has worked well so far this winter to ward off a sinus infection that can be caused with the mucas gets thick due to dry weather. Whenever I begin to feel stuffy, I take one and am fine the next day.

This is not normal and I would call and tell the eye doctor this is happening. You mentioned that you have dry eyes. Are you treating this? I have dry eyes and use drops twice a day. They are oil based drops that last longer than the artificial tears kind. Acording to my eye doctor, dry eyes can affect vision. I know my vision is better when I remember to use the drops twice a day. Still, call the doctor first.

Dr. Grubb, a dysautonomia expert at Medical University of Ohio, said on my initial visit with him severyal years ago that he believed my POTS to be secondary to an autoimmune disease. I believe he said this based on my reporting of my symptoms. About 25 years ago I suffered attacks of a mysterious "virus? " that caused my wrist bones and knuckles to swell, accompanied by a low-grade fever, extreme fatigue, and the POTS. It is possible I had the POTS before that or even all my life because even as a child I was always looking for a place to sit down. However, the rheumatic type symptoms were sudden onset as an adult early 30s and they came and went over the next several years until they seemed to stop. It has been about 15 years since I have had a flare. My primary care doctor at the time told me he was sure I have rheumatoid arthritis, although the blood tests did not show anything, and the x-rays of my wrists taken by a rheumatologist did not show arthritic changes. Since then, sometimes my ANA will be abnormal and sometimes it will be normal. Nothing else has shown up. I sometimes think I have some kind of autoimmune disease that is just not discovered yet. Michigan Jan

Dear Pooh, I am very sorry that you are so sick and have to miss out so much. Most people really don't understand. #1 People who say "I'm so glad you are here." My reply would be, "Thank you! I have been so sick lately that I am happy I can be here today, because tommorrow, who knows?" If you are able to leave the house and go to church, celebrate it, period. Turn a blind eye to the can'ts (stand, kneel, sing). You are right--doing this is VERY hard, but life is all about doing the hard things. #2 It is hard to listen to other's criticism, especially when the criticism is unwarrented. I find that I get more respect and help when I stand up for myself in a matter-of-fact, nonemotional way, rather than being apologetic or upset. I have even interrupted criticism as a way of not accepting it. For example, someone says, "If you managed to get to church, surely you can manage to do the grocery . . ." I might interpret and say "Yes, I did, but it took all the strength I have today. The grocery is beyond me at this point. Will you call me later in the week and check to see if I need anything?" One thing that stood out to me in your post is that both #1 and #2 begin with "I feel like. . ." So we are really talking about feelings here. The difference between being able to focus on the cans instead of the can'ts is how depressed we feel at the time. If one is depressed than one feels hopeless. Your case is not hopeless. I do not know what you have been through to get help from doctors. I do not know what meds/other helps you have tried. However, keep on trying. Always have a game plan for what you are going to do next to help yourself get better. Change the plan as you play it out. For example, if your plan is to try a certain med, and you try it and it doesn't work out, then tell yourself that you gained a little knowledge and now you make a new plan. The secret to having hope is to always have a plan and to never assume that the way you feel today is the way you will always feel. Your symptoms will change as time passes. Some things may even get worse, but some things will get better. The one thing we can count on is change. You can even plan some changes. What can you change that may have a positive impact on your quality of life? Right now is an excellent time to be hopeful. I am amazed at some of the new knowledge about POTS and dysautonomia. They are figuring it out. Effective treatments are the next step after figuring it out. In the meantime, we live to the fullest we can and we keep on following our plan until we get a favorable shift in the quality of our lives.

I have had times when I assumed it was low blood pressure causing a particular symptom and so I went to some trouble to take my blood pressure at those times when I was having symptoms. I took my blood pressure measuring device to the gym with me and I carried it for a while in the car, and even took it shopping. Then, when symptoms hit, I could take it and record it, and make a note about symptoms I was having at the time I took the BP. This was very enlightening. I found that sometimes my BP was normal and other times it was low. What was even more enlightening was also taking it several times when I felt normal. I was surprised to see how low it could be at those nonsympton times. I recommend that you monitor your own blood pressure for awhile--you will surely learn something useful. I also recommend that you learn how to take your own BP using a non-digital machine. The new digital machines can be unreliable for taking blood pressures that are low. I had quite a discussion with the maker of one brand and learned a lot about them. Here is what I learned: They are not accurate when measuring very low blood pressure. They are not accurate when you take your blood pressure standing. They only claim to be accurate if you are sitting down with your arm resting on a surface and if the cuff is wrapped correctly. For a thin arm, the cuff must be wrapped at an angle. They do not claim to be accurate if you take several blood pressures in a row--instructions with mine said I must wait at least 10 minutes between measurements. I also found the digital ones to be inaccurate as to recording pulse rate. I would count my pulse at the same time the BP cuff was taking it. Because my blood pressure is low, the machine missed many beats and often recorded too low a number. My husband also found that many times a particular digital machine does not register correctly. He bought one, took it to his doctor and the doctor tested it against his office machine. It was off, so my husband returned it to the store, bought another one and took it to the doctor. Again it was off. My husband returned 3 of them before the fourth one tested out correctly. However, that one has been reliable and continues to work well for him. My husband has high blood pressure. It is my opinion that the old fashioned, pump-up cuffs work better for folks with low blood pressure. And it is not difficult at all to learn how to use them. I think it is important to understand what is really going on in our bodies as much as possible before making a medication decision. Otherwise, you are choosing a medication based on an uneducated guess.

I have nonfainting POTS. While I am happy that I am not a fainter, I am sometimes amazed that I can feel so bad and still remain conscious! I don't know what kind of doctor(s) you have seen to get help with your symptoms but I hope you can get to one that knows about POTS and what meds might work for you to make your life more comfortable.

Note to Michelle, I don't mind the birthday wishes. They are positive day brighteners. What I meant was that I did not like seeing them at the same time that other posts were being pulled for being off-topic. That just seemed like such a contradiction to me. It also doesn't matter to me if you have a separate area for off-topic things, but if you start splitting up people's posts and sending some part of a post to another location, I would find that very confusing and I think the person who wrote the post would find it difficult to see their message split like that. I hope that you can bring the forum back to the friendly, more casual site it once was. I have not been a part of the behind-the-scenes discussion, but I can sense it, in that the forum just "feels" different to me in the last few months.

I think a power chair would be a good thing for you. It certainly beats looking for a place to sit down when you need one! And when you improve (notice that I said WHEN and not IF), you won't have to use it. So if you can get one without having to pay for it yourself that would be wonderful. I hope this works out for you.

I do get these sometimes and they don't go away until I sit down or lie down and stay down for quite a while. I have always thought that mine were caused by not enough blood in the brain, since I think my blood pools in my legs when I am standing.

I have had POTS for more than 25 years. A hoarse voice is not associated with POTS. I don't know about MSA. There can be many causes of a hoarse voice besides a cold or drainage from sinus. Acid reflux can make your voice hoarse from the acid coming up to the vocal chords. There can be others reasons as well. I would investigate another cause than POTS.

Belinda, You have my support and prayers and love coming your way. Of course you are scared. I know you are doing everything you can to ensure the best possible outcome for yourself, such as asking questions, making sure your anesthesia is the best one for you, getting the extra fluids, etc. Once you have given it your best effort, then you can rest easy, telling yourself the rest is up to the doctors and God.

LindaJoy, When you started Paxil, what dose did you start? I think we can avoid a lot of side effects and hardship when starting any new drug by starting out very low and very slow. For example, several years ago, I started paxil at my doctor's recommended dosage. He assured me that it was a low starting dose. I had a heart rate of 180 lying down, I became suspicious, and I had very strange and dangerous thoughts and experienced hypomania. I had to be watched for 10 days until my body learned how to manage the drug. I finally gave up on the Paxil becuase of weight gain and constipation. About a year ago I tried Lexipro. My doc said to start with 1/4 pill, which is indeed a low dose. Well, I started with 1/8 a pill a day for 1 month. And guess what? No side effects, but at about the 1 month point, the positive effects of the drug kicked in and I could think very clearly and had more energy. I continued to take the drug at that dose and finally stopped it because it then put me into hypomania and I couldn't get any rest. SSRIs are not for me. However, the lesson is that you can sometimes increase your chance of success with a new drug by taking it very low and very slow. As far as unregulated supplements, I choose to leave them alone becauase they are unregulated.

I would like to see off-topic posts allowed and have the poster label it as such in either the title or subheading line. That way, you can skip reading them if you want to, depending on the subject listed. I can see it might be a problem if everyone decides to use the forum as a blog. Because this forum is a place where people with dysautonomia can talk to each other and share their feelings, people have become friends, almost like a "work" family. It seems natural that they want to share more than a very strict definition of what is on-topic. I feel that lately, the adherence of what is on-topic and what is off-topic has been too strict. I find it silly and annoying to see happy birthday wishes posted at the same time other posts are pulled that I viewed as on-topic. It must be a monumental job to be the administrator or a moderator. I appreciate having a place to talk to other POTS patients.

I have just started trying mestinon. I am taking 1/4 of a pill once a day. So not much chance that it is really affecting me yet. I am just trying to get my body used to it. However, what are the GI issues. I thought they were GI upset and loose bowels or diareha. For me, I have experienced some GI distress and increased constipation in the past week since starting this low, low dose. Surely it doesn't cause constipation?

From my own experience and from what I have read about dysautonomia and POTS, blood in the urine is not a symptom associated with POTS. You don' t say if you have just a little blood in the urine or a lot. I once had what they call gross hematuria (so much blood the urine looks like blood) on two occasions which stopped both times on its own. I had kidney x-rays, as they thought it was possibly that I had passed a stone, or that I had cancer, but that was not the case. That was several years ago and it still remains unexplained. If you are talking about a small amount of ocult blood, I have had that for many years, too. In my case they are not worried about it, most likely because I had everything checked out. You are doing the right thing by having the tests to look for the cause. Then you can go from there. In the meantime, try not to worry, as any particular symptoms can have many different causes. Yes, I will pray for you. Let us know the results of your tests.

I have a sleepy time some days and it is usually at dinner time. It is almost impossible to stay awake at that time. Sometimes I actually just give up and take a nap on the couch. If I do stay awake, after about 1 -2 hours, the urge to sleep abates and I can then stay up until normal bedtime. I do not sleep well at night these days and so it may be due to this.

I read the posts on this forum just in case I can offer anything to anybody. However, there are some posts that I have difficulty reading and these are the "solid" posts . . . by that I mean the ones that are written without any paragraph or line breaks. Sometimes I lose my place while reading them. Also I tend to lose the train of thought behind any given part of the post. Many times I don't offer a reply because I feel like I may have skipped over important parts when I lost my way. It would help this old person with POTS read and understand better if we all tried to avoid writing "solid" posts. It doesn't matter if one makes two or more paragraphs from a single train of thought. It just matters that there is space there to give my mind a chance to take things in bit by bit.

Goodness, Ernie! I forgot all about that. I have had a lot of accupuncture and one day, while I was waiting to see the accupuncturist, I was sitting next to a man who was there for his second session for stopping smoking. He told me he stopped cold after only one session and it was now six months later and he had not had any cigaerettes since but decided to come back in for an accupuncture session just to make sure he did not start again. He also told me he had decided to use accupuncture to help him quit because his friend had gone to this same accupuncturist and stopped smoking immediately also. This was a Chinese Doctor accupuncturist, not an MD

Dear Vanessa, You can't do a darn thing about what you did in the past, so let that go. It does not help to chide yourself for past behavior. You can control what you do now. Get as much help as you need to quit and feel proud of yourself for your efforts. You can start feeling proud right now, this minute, because of the decision you made to quit. I think Morgan has an excellent suggestion about waiting 5 minutes when you have the urge for a cigarette. Use that time to think about what is causing the urge and how you might do something else instead. I have never smoked, but I do believe that quitting smoking is very hard. But Vanessa, you can do hard things. Hard things are just that--hard. Not impossible. And you can do them. Go to the pulmonolgist. Let others help. Stay stong and you can do it.

Here's another amazing thing. I have neighbors--at least 4 of them who will help me if I need it, like bringing groceries during the times he is sick from the chemo. He prepares for his hospital treatments by going to the grocery the night before and putting gas in my car! That way, if he is too sick on the chemo for several days, we do not have to go out. In spite of the cancer, he cut the grass all summer. Last time he was on chemo, I paid some kids to clear the snow. That was the first time we needed help! I go to get him this morning. He will feel better in about a week and get to feeling almost normal. Last week, a few days before chemo, he went out to a fire. He drove the Salvation Army canteen truck to the site of an apartment fire, where he and another disaster services volunteer gave out sweatsuits and sandwiches to those who were burned out of their homes in the middle of the night and were out in the cold in their pajamas. I have learned so much from watching how he deals with this. He just does what he can, when he can, and stays on the couch when he is sick. He does not fuss or worry. It is a good lesson for me in dealing with my POTS.