michiganjan

I think that doctor is exactly right. I have interstitial cystitis symptoms too, as well as diabetes insiidus symptoms and irritible bowel and . . . . I won't list everything. Something is causing this and it is not something fatal, so the research money does not go there. But something is wrong that is not yet understood by the medical community.

If I were you I would go to an endocrinologist ASAP. You may also want to research and read about diabetes insipidus. This is not diabetes melitus, which is what we commonly think of as diabetes. Diabetes insipidus has to do with fluid balance and the hormone desmopressin. It has nothing to do with blood sugar or insulin. This message won't let me put in a link, either that or I don't know how. But I recommend visiting the following website. I belong to this organization and take the newsletter. http://www.diabetesinsipidus.org/

The SOB could be caused by you inhaling the odor of the mascara. Mascara does that to me, depending on the formulation. If I experienced the reactions you are having while applying mascara, I would think I was allergic to the mascara. You did not say you have this reaction to applying lipstick or powder. Is it makeup in general or just the mascara? If you can find a water-based mascara, try that.

I started taking guitar lessons about 5 weeks ago. I have a guitar that I had when I was a teen. Back then I only learned how to strum chords, as I liked to sing. Now I can't sing at all due to POTS. After all these years I have the guitar out again and am taking lessons which encompass classical techniques, chords, and strumming rhythms. It is extremely difficult--the fingers of each hand are labled differently--one has numbers and the other letters. So trying to read the music and see the notes and which finger of which hand is doing what and coordinate that with keeping rhythm is sometimes more that I can do. This is exactly why I am doing it. If anything will exercise my brain, this is it! It gets me out of the house one day a week, and I have to practice in between. Most importantly, it is NOT cancer. It is NOT POTS. My teacher is a fantastic young musician and a talented teacher. It would take me years of study to ever be able to play like him. However, I am not going to even try. I am just going to lumber on the best I can and someday, I might actually make some real music! On the other hand, I might quit any day. That is part of the charm of doing this, too. I have no idea if I can succeed or not or how long I will try. It is kind of like living in the moment. Off to practice!

I have some cymbalta here. Prescribed by Beverly and Dr. Grubb. I trust them that they know more about POTS than I do (I would not say that about most doctors!). They want me to try it, even though I did not have a good response to paxil, lexapro, prozac, or wellbutrin. They explained to me that cymbalta is both an SSRI and a norepi reuptake inhibitor. Dr. Grubb refered to my POTS as beta sensitivity type. I have the same question as the rest of you. If one already has too much norpei floating around then why prescribe a drug that will cause more? Dr. Grubb knows I have POTS and he prescribed it for me. And Beverly has urged me to try it and I have told her I did not do well with the SSRIs or Wellbutrin. Her answer was that Cymbalta is balanced. I need to get a blood test for liver function before I can try it. Wellbutrin pushed my liver values up. So Beverly prescribed a baseline blood test before trying the cymbalta and then another blood test every 2 months. I feel like that makes at least that part of it safe for me to try. If anyone else has a good explanation, please share.

Dear UnicornIsis, If you can't get the horse to the water, then bring the water to the horse. In other words if you can't get out to see people, then attract them to come to you. Are there any kinds of games you like? Cards--here's a good one if you like games--Mah Jong. Or do you want to learn a new game? You could post on the bulletin boards at the base for people who like a certain kind of card game or other game to get them to come to you. You can even specify a non-smoking, non-perfume wearing group. Same thing goes for knitting and sewing circles. I do not go out much but I have a wonderful group of women friends who are all willing to come here to see me. They will come for lunch almost anytime and they bring their own lunch! I also have an occasional very silly party. I have to have lots of help from my husband to get it together. And I also work on the set up for days even weeks in advance. This gets my assortment of friends together and they now know each other and like each other. Several years ago, I made a decision to get rid of anyone as a friend who did not take me or my illness seriously, who showed any signs of competitiviness with me or who were deceptive or sneaky, or underhanded in any way. In other words, I got rid of all the toxic people in my life. This left me without many friends at all. But I had decided that I would rather be left alone than spend time with anyone who was not truly worthwhile. I am a writer. One thing I did was to call the contact persons for writer's gorups and tell them that I am a writer and was looking for writing friends. The reason I did this was that writers are apt to be creative and open to new experiences and those were the people I was looking for. The best friend I have today I found as a result of that search that I did over the phone. I invited her to come see me and she is still coming. Two more good friends I found in neighbors. Another I found at a part-time job I did for awhile. One thing I always avoid is anyone who is an addictive personality and also those who are enablers. You will often find an addict married to an enabler. I have learned to avoid people who are married to abusers or addicts. These people seem really nice and they have a genuine problem, which is the spouse, but if they are staying with the spouse and merely complaining about the rotten life they have, they are not friend material for me. I want my friends to be doing the best they can for themselves. If you can pinpoint what interests you, then there are others who are interested in the same thing and some of them will be willing to come to you. Good luck!

It is very easy for people to say anything that pops into their minds. It is much more difficult to be the one doing the experimenting. Only you know how it feels to live in your own body.

Note to Michelle, I just reread the letter sent by Dr. Grubb and Beverly to my PCP after my last visit to Dr. Grubb. It says, "suffers from the beta hypersensitivity form of postural orthostateic tachycardia syndrome. She also has a history of joint hypermobility syndrome, anxiety disorder, multiple allergies, and mild intermitent asthma." Again, I will ask about this on my next appointment. However do you know if beta hypersensitivity is the same as hyperadgrenatic? I guess I was assuming it was, but this is not what it says. Any thoughts? To Morgan, I go to Dr. Grubb. I have taken meds prescribed by him. He has always started me at a low dose and had me work up to the higher doses. On my own, I start with even smaller doses. This works best for me. I started Mestinon at 1/4 tab a day. Dr. Grubb's starting dose for me for mestinon was 1/2 pill 2 times a day. I worked up to his starting dose, even though his starting dose was low. Hope this helps.

Thanks, Michelle, for posting this. I found the article easy to understand but I am very confused by the chart and the classification. According to the chart I have secondary POTS -- secondary to Hypermobility Joint Syndrome and possibly also secondary to an autoimmune cause -- Sjorn's). I also have two kinds of Primary POTS-- partial dysautonomic (because I had onset following a virus and a major life stress) and the hyperadgrenatic form. So I have at least 4 different forms all at once! I will have to print that article and underline all the different kinds I have and take it to Dr. Grubb this summer and ask for clarification! So how many others on here see themselves with more than one type according to the chart?

Amy, I think you will surely end up doing better than you are now. The question is what is the best way to get there? I think either a return to Cleveland or go and see Dr. Grubb. You really need someone knowedgable about all aspects of your problems, and this should especially include knowledge of cardiac issues and the pacer, and all the meds you are one to help you manage the meds and work forward to a better place for you. Just keep of forging ahead. You will get there, but it may take time and experimentation.

I did well with a Z Pak and I was taking a beta blocker at the time. Ask the pharmacist or doctor.

Wow, Nina, what a fabulous opportunity! I think you will like your Cool Vest. I love mine. The extra packs are a great idea. Since I don't travel, I am never away from my fridge more than a few hours.

Corina, Don't give up before you are turned down! And even if you don't know at this moment where you can get help if they do turn you down, there will be other options for you if that happens. You just haven't thought of them yet. I am glad to see that you are posting. I hope this works out for you.

Sue, I am praying for her, too. Michigan Jan

I am considered hyperadgrenetic--that is how Dr. Grubb classified me. Hyperadgrenetic POTS most likely secondary to an autoimmune disease that isn't understood yet. When the adrenelin runs, then it can cause any or all of the "flight or fight" symptoms. It can cause mild feelings of uneasiness or a full-blown panic attack. Michigan Jan

I have POTS but I also have panic disorder. Panic on top of POTS can be a real mess. Talk with your doctor. If you have panic, then controlling the panic can certainly help you feel better and function better. It can make POTS or dysautonomia easier to deal with. Do not think that a doctor telling you that you have panic means that they are saying your are crazy or that you do not have dysautononia or POTS. Panic can be part of dysautonomia and POTS. Both are regulated by our nervous system. Get whatever help you need to sort it out. Things do not stay the same--everything changes, including our symptoms. You can bring on change by addressing everything you can medically and then working to find the best solutions for yourself. MIchigan Jan

Dear Mary, I went through years of bladder ****. I had bladder pain--often I felt like I had to urinate right now! And often I could not go at all or only a little, in spite of the urgency feeling. There were a couple of times I could not go at all for an entire day and had to go to emergency to be catherized. Then I learned to self-cath, but have not had to really do this. I saw two different urologists. Diagnosis was "irritable bladder", possible interstitial cystitis but we did not do the biopsy for the interstitial cystitis. Now my bladder works fine (I have a bit of retention, but then I had a 9 pound + baby 30-some years ago!). No urgency, no pain. Once in a great while I have a recurrance of not being able to go in a mild form and that is usually transient and caused by something I have eaten. In spite of my frequent consultations with the urologist I was the one who finally figured out what was bothering my bladder. And for me it is a two-part solution. FIRST PART: Nine years of bladder **** coincided with 9 years of coregard (beta blocker). Everytime I got off the coregard, my bladder got much better. Since then I have experimented with many beta blockers. I really need a beta blocker to keep my tacycardia under control. I have found that the pain, urgency, and inability to go will vary with different beta blockers. The only one so far that works without causing bladder symptoms is Sectrol. I have taken this one for several years now and it does not hurt my bladder. SECOND PART: This one has taken many years of experimentation for me to figure out. There are some foods that will hurt my bladder, especially when it is traumatized from the wrong beta blocker. I worked off a list from a book on Interstitial Cystitis. Basically when my bladder acts up I stop eating any acid foods which includes tomatoes except yellow tomatoes (this means no catsup, pizza or spagetti sauce etc), citrus (try using Minute Maid low-acid orange juice), almost all fruits except yellow apples, pears, strawberries, and blueberries. The other foods to avoid are all nuts, chocolate and caffine. Spicy foods can also cause symptoms. In my case I got well by first stopping the beta blocker (later finding a better one), which was irritating my bladder, then avoiding the above foods which would irritate my already irritated bladder for a period of many months. As my bladder healed, I was able to add back in the foods one at a time. The only way I can explain this is that not irritating my already irritated bladder allowed it to heal. One thing I find I cannot do: I cannot eat spicy foods or caffine or many high acid foods. They will hurt my bladder within hours. I hope there is something in what I have learned from my experience that will help you. Hugs, Michigan Jan (who used to live in Ohio!)

The thing that works best for me is to keep a variety of stuff going. One can only sit and read so long at one time! I always have a jigsaw puzzle on a table in my living room. I work on it whenever and however long I feel like at the time. I would like to learn how to bead clothing. My girlfriend is now sewing beads on a pair of my jeans . . .I would like to learn that someday. I have also just started taking guitar lessons. Have had 6 lessons so far. I do have to leave the house to do this but they are only 30 minute lessons and a short drive from home. So I just move from one thing to another and not stay with any one thing too long.

Dear Mary, I am so sorry you have to go through this. I am thinking of you and praying everything will be all right. It is so hard to get through these things, but the faster the tests get done and you get all the information you need, the better.

Do you know if the neurologist you are going to see is familiar with POTS dysautonomia, and nerually mediated syncope? I think it might be a good idea to see a doctor who at least knows of these things as possibilities in addition to knowledge about other possible causes of your symptoms.

I have been multiply chemical sensitive for many years and I can't say for sure if my chemical sensitivities makes my POTS worse or not. However, they do seem to go together, in that I got sick with both the chemical sensitivities and the POTS at the same time, following a virus. And I know other people with POTS that are also chemically sensitive. It may or may not be the flame retardents making you sick. The smell of the foam is enough all by itself. There are two kinds of foam used in mattresses, memory foam and the other kind. You don't say if your topper is memory foam. Either kind of foam can smell and make you sick. My last new mattress needed a few months to air out. I would like a new mattress, now, too and I have looked into it quite throughly. All the spring mattresses use foam padding. Janice's is a catalogue that sells mattresses with springs and all the padding is cotton or wool and the wool is naturally flame retardant. However the mattresses are very expensive. Like around $1,000 and that may not include the box springs! Another problem with foam is that it will break down and then lose the properties you bought it for. What about a sheepskin type thing as a topper instead like the Cuddle Ewe? I once bought a new couch that never did outgas enough for me. The fabric had a rubberized backing of some kind. I ended up selling it for 1/2 of what I paid for it . . . I was tired of having it in the garage and hauling it out in the sun everyday for several months. Finally had my old couch recovered with a tolerable fabric.

I went to my primary care provider today. He diagnosed firbomyalgia by putting pressure on several pressure, trigger points on my body. He said that changing acetylcholine levels can cause pain. However I have had flares of fibromyalgia in the past, never having tried mestinon, so I can't be sure the mestinon caused this now. Anyway, I have a colonoscopy on Thursday, so decided to stay off the mestinon for now until after the test, as I want to just get the darn test over with. In the meantime, I sent a fax off to Dr. Grubb and Beverly about my dossage and symptoms and asked their opinion. I hope I can start back on the mestinon again after the test. I also hope the fibromyalgia goes away before the test!

I have been taking Mestinon 1/2 60 mg pill 2 times a day. The last week I have been experiencing a lot of pain all over. Sometimes the pain feels like it is in my bones and other times it feels like it is in the muscle, for example, right now, my biceps feel sore like they would feel if I gave them a workout with weights, however I did not exercise them. I have not had muscle weakness or cramps. The muscle weakness and cramps are included as side effects of mestinon and others have mentioned them, but the information on mestinon on the myasthnia gravis site does not say muscle PAIN. Nor have I seen mention of pain all over the body. For example, I have pain in my wrists and pain in the middle of my palm and pain in my knees and pain in my shoulder and back. UGH! I have had periods of body pain over the years and it is often accompanied with fatigue. I have had difficulty for the last 3 days staying awake--the fatigue is terrible--I just sit here and try to stay awake. Again, I have not seen mention of overwhelimng fatigue associated with the mestinon. Has anyone else experiencecd this from the drug? I have had some vivid dreams. This one has been reported by several others on this forum, so I guess it is probably caused by the mestinon. I can live with this one. What about constipation? I have been taking 2 doses of metamucil a day and it isn't helping much. No one has reported constipation. I was hoping the mestinon would speed up my system some. Chills, I am having constant sensations of chills rushing over me, although I am not particularly cold. When my husband put his hands on my shoulders, it sets off the chills. At the same time, I can stand up longer and better than usual, but I haven't put this to a good test yet, i.e. haven't been shopping or doing much walking. Comments, please

Dayna, Have you reported this to the prescribing doctor? That is the first thing I would do.

I am trying it right now. Took me about 3 weeks to work up to the starting does of 1/2 pill 2 times a day (60mg pill). So far, I may be a bit less potsy on my feet, but really can't tell for sure. I certainly have constipation though and have had it steady since starting the mestinin. Now that is something unexpected with this med. Perhaps the constipation means I am not not taking enough of the med to get any effect at all. I started cerefolin shortly before starting mestinon. I wonder if it is the constipation culprit? I am going to stay at this dose level for at least 2 more weeks as I have a colonoscopy to get through. Then I will increase it. Do search for the other mestinon threads on this forum. They are very informative.