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Everything posted by CuriousThinker

  1. @potsie1990 I tried the mestinon and it didn't seem to help. I did notice side effects though like mouth watering, lack of appetite and stomach feeling really full, indigestion, slurred speach etc. The other prescription I have is florinef. I may eventually get a prescription midodrine or something like that.
  2. I've heard of cerebral spinal fluid leak in relation to these conditions. I think it can come out of the nose or post nasal drip. It might also be able to come out of the ear.
  3. @WinterSownand @PistolHe wants me to take it for a month and report back what happens at the next visit. I'm not sure what positive things this is supposed to do. What is it? Another thing I noticed is that I seem to be having difficulty swallowing in addition to controlling my mouth and tongue. My stomach also feels very full and not hungry. I think I noticed some eye watering for a short time and my eyes are normally too dry. I did eat once today, so I'll see how I feel later. I don't have bonine or any anti-motion medications. When I look at my hands my vision wiggles and things look wobbly when I move my eyes.
  4. @Potsie1990Wait, what? I'm prescribed 240mg mestinon daily. Taken as 60mg four times. I just took my first dose about 3 hours ago. I was worried about taking these medications because of the side effects, but finally decided to give it a try. My other one is florinef. At the moment I feel like I can't eat anything and my stomach is all full and also I'm having weird symptoms with my eyes and muscles being all jumpy.
  5. @wintersown I just called the pharmacy and they confirmed my dosage is within normal range and also matched the paper prescription order they received. I seem to be experiencing some effects though. My speech feels a little slurred and my eyelid is twitching a lot. Also, I think the movement of my head feels a little weird like my balance. Also, my eyes are jumping much more than usual when I move them and look at close objects. Also, my stomach feels really full and I feel like I'm spitting up liquid even though I haven't eaten anything today. My muscles are starting to twitch too. So, after a few hours that is what Mestinon seems to be doing.
  6. @WinterSownDo you think I'm reading this wrong? It says take one tablet 4 times a day. So, I took a whole tablet. Is one whole pill more than 60mg? That is what I was wondering. I somehow thought I remembered something, but I'm not sure.
  7. Yes, I am familiar with this. I also just took my first Mestinon 60mg pill about an hour ago after waiting a while to determine if I should take it and what my options are. I don't notice anything so far. Before I learned of Mestinon I already knew I was very sensitive to choline esterase inhibators found in plants and later found this website: https://sites.google.com/site/annerwright/cholinesterase-inhibitors This made me think that taking Mestinon would be wrong because that is what Mestinon does! Whenever I took these plants it would make me feel very stimulated, anxious and felt like I took caffeine, which I don't drink. So, I assumed that is what Mestinon would do. This prescription also says to take 60mg 4 times a day. But, I talked over with the dysautonomia specialist and he pretty much says we need to see what happens. So, in a sense, these treatments are a bit like tests. That can get bad if one is experimenting with something that has risks though.
  8. Well, I just took my first Mestinon pill. It is 60mg. I took the whole thing. I wondered if I was supposed to break it into quarters or something, but I guess the whole pill is it. I figure I should at least try this and see what happens. I don't have a major problem with fainting. It has happened once on a hot day. I do lose my hearing when I get up from certain postures laying down. I think florinef is more for the POTS/fainting etc. I've also been prescribed that and I'll try one at a time so I can track what they do. I'm actually concerned about taking these because I don't think it is good to be taking these long term and I don't think they will return me to a high level of performance. So, that makes me think the risks and side effects would outweigh the benefits.
  9. @Derek1987 I used to have a lot of bleeding problems. Not just hemorrhoids. I had to eliminate all plants from my diet and go zero fiber. On an animal based diet the extreme bleeding has been avoided from hard stools. I think it is the stools being too hard and maybe also the muscles around the sphincter which are controlled by the autonomic nervous system that are not under your control not releasing well. So, removing fiber and soft animal food works. As far as disability. How is that going? Do you live in the USA? You need to talk to a doctor and tell them you can't go into work anymore if you are just showing up and not able to do job because you are sick. You probably need to call out sick and use up your PTO and then call and schedule an appointment with your doctor for a visit because you are sick. Ask your company where the long term disability and short term disability policies are and put in a request with the insurance company after you talk to your doctor. I'm trying to remember. I think I met with my doctor and told him I had been sick out for a week and used up my PTO and needed to go on disability. He basically supported me then and then I called up the insurance company and opened up a case for disability. Then they sent the forms to the doctor.
  10. The only quick sharp panes I get or used to get a lot were around my ears area. It may be myofascial trigger point referal pain from the clavicular division of the SCM muscle. As far as all over the body I have had wet/water sensations and stinging burning paints hitting me randomly all over the body. I wouldn't say they felt like sharp though. That was a very traumatic experience that lasted 5 years. It seemed to be a reaction to taking many different antibiotics in an attempt to see if I had Borreliosis infection. After 6 months or so those symptoms started and I decided it was a really bad idea to try that and the doctor was really bad doctor, which I suspected, but I didn't think the antibiotics would do any harm. The stinging sensations would take over a year to go away and would start all over again any time I had an upper respiratory infection. That is all it would take. I don't think I've had antibiotics for over 8 years now and don't plan to any time soon.
  11. I did the tilt table test, which I think was normal. They said I didn't have POTS. However, I was diagnosed with orthostatic intolerance. From laying to standing. I think my pulse went from 80 to 108. Not super high, but I think it isn't suppose to do that. At another doctor's office they did the test and I think it went from 80 to 150. I'm not sure why. It might have been me turning my neck or something. I think I'm going to buy one of those pulse rate monitors. Also, I layed on a table and blew into a tube as hard as I could. When I got up I lost my hearing for a few minutes. My hearing was very muffled. None of that shows up on the test. But, there is something wrong with my hearing going out. Unfortunately a lot of my other systems involved are also not tested, such as digestive system IBS, dry eyes, tinnitus, muscle pain. That stuff just doesn't show up on a test.
  12. I don't think I have reynauds, but sometimes my hands and feet turn purple if it is cold or. My dysautonomia cardiologist observed this in their office which had air conditioning.
  13. When I look at things close up my vision shakes. No idea what it is. Maybe dancing eye syndrome. When I was young my vision would look bright and dark at the same time like high contrast. I developed dry eyes in recent years too.
  14. My jaw muscles, face and neck muscles hurt. So do many other muscles all over. I have a bad history of jaw muscle problems. It is always there, but not as bad as when it started years ago. There is a trigger point around the should blade that can refer to the neck and face. You can try treating it, but I have had little luck in relief. The trickster or something it is nicknamed.
  15. I believe this happens to me from heat. Chest, maybe neck, but never face. Could be some kind of flushing. Maybe mast cells, not sure. I have ME/CFS.
  16. When I was young I would get these electric shock sensations in the chest. I was eventually told it was caused by mitral valve prolapse without regurgitation. It may have been the cause, but I'm not totally sure. I also had weird vision that looked like high contrast and many random loud tinnitus sounds. The shocks and vision went away, but not the random tinnitus. Fast forward to my early twenties and my health starts to fall apart. I get fatigue and muscle pain all over. ME/CFS. Many other symptoms. I think it started after I tried allergy shots. That may have been it, but I'm not sure. I so it did something to my immune system. I also got really bad respiratory infection after starting. By mid 30s diagnosed with dysautonomia at a children's heart center and dysautonomia center. They said I may have had dysautonomia my whole life and it was missed. It just got worse.
  17. @StayAtHomeMomThanks for letting me know I am not alone. I have tinnitus all the time now ever since the pain spread to my jaw and face from my neck and back. When the hearing loss happens I think I do hear a bit of tinnitus spike as well. Also, all my life I have gotten random tinnitus spikes which last about 30 seconds with no hearing loss. I believe they would often happen with a bad neck posture. I came to believe this happens to everybody because I have always had this, but I think it is not normal. It is funny the doctor actually said something I was thinking as well when he said to take the drugs. He said I've probably never experienced what it is like to be healthy and I don't even know what it feels like. He also said that it probably prevented me from fully growing due to the dysautonomia.
  18. @StayAtHomeMom@yoginiI just saw my cardiologist at the dysautonomia center today and we reviewed the results of all the testing I have had. He said I did not have POTS, which is pretty much what I expected. I had no symptoms on the tilt table test either. He said I do have constitutional or neurally mediated hypotension. He said I may have had this my whole life and it was missed. I told him I have had symptoms of bright/dark contrast vision and electric shock sensations and brain fog since I was a child and we could not find the cause. One doctor said it was mitral valve prolapse without regurgitation for the chest problem. I believe that is left valve area and also people with ME/CFS have low blood volume and smaller left heart. I know I have dysautonomia though because my sympathetic and parasympathetic nervous system aren't working causing anxiety, insomnia, dysrupted sleep patterns, lack of tears for eyes, digestion that doesn't move, fatigue on and on. He said the purple hands and feet is blood pooling. He also said I have weak pulse and low blood volume. I know low blood volume is reported in ME/CFS. He wants me to take two drugs Mestinon 60 half pill 4 times a day. and Florinif. I'm just researching them now as I write this. I googled Mestinon and it says it is a cholinesterase inhibitor, which I know what that means and am very familiar with because I'm extremely sensitive to choline and cholineesterase inhibitors and have discovered this because I'm extremely smart and hard researcher. I am so sensitive to cholinesterase inhibitor inhibitors that eating any foods which are high in choline like eggs act like an extreme stimulant for me and give me insomnia. Further, any plants which contain cholinesterase inhibitors also function like a strong stimulant for me. Some examples are potatoes, blueberries, and there are many others. These stimulants give me energy, but also cause extreme anxiety and insomnia. The head doctor who prescribed me this does not know this, but I told the first doctor who met me on the first visit about this. I figured out this pattern after much observation of what I ate and research. I later found this website which lists choline esterase inhibitors. https://sites.google.com/site/annerwright/avoiding-cholinesterase-inhibitors The problem is probably because the enzyme which breaks down choline of acetylcholine is not working correctly in my body. There has been research that shows people with dysautonomia have antibodies to g-protein muscarinic acetylcholine receptors. I talked to the labcorp technician at my rheumatologists office and she called her boss and found an unlisted test (so they say) for antibodies for the muscarinic acetylcholine receptors and I oredered that test a few days ago. I don't know the results. What I can tell you is that the listed test is for antibodies to the other acetylcholine receptors which are the nicotinic type. That is for Myasthenia gravis testing, not dysautonomia.
  19. Does anyone have the symptom of losing their hearing for a few minutes? For me it does not happen just when laying down and getting up, but it has to be slightly different. For exmaple, one time I was doing dumbbell presses on a bench press on my back and when I got up I lost my hearing for a few minutes. It was very scary. My vision stayed. Another time it happened I was doing dysautnomia testing and blowing into a device and when I finished the testing and got up and started walking I lost my hearing, but only about 40% instead of 95% like when I was doing the bench press and got up. There must be something specific that has to be done to provoke it, but it is tied to doing something intense in a certain kind of laying down position and then getting up. I may mention that when my dysautonomia started I also developed tinnitus and shaking vision. I also have fatigue, muscle pain and many other symptoms of dysautonomia.
  20. I've had myofascial pain syndrome for over 12 years and I have dysautonomia. Lots of trigger points. I believe I had the dysautonomia my whole life. It started with just weird contrast/dark/bright vision and electric shock sensations in chest. It wasn't until the early 20's that the myofascial pain started and the fatigue. A few years after that the myofascial pain spread more to the jaw muscles and became worse. About 10 years after the myofascial pain started I started to have problems with tear production, syncope, intestines, esohpagus/reflux and much worse fatigue.
  21. All of these neuro-immune conditions are on a spectrum. There is likely involvement for everybody. The degree to which you have one and not others determines which labels you use. I also investigated histamine sensitivity and later mast cell activation. You probably have mast cell activation involved, but not to the deadly or extreme extent that a person who is primary mast cell activation. I would stick with the larger neuro-immune picture. Personally, what I've done is start a strict diet to correct the immune system in hopes it will help after long enough time. I've returned to the original human diet, which is nothing by red meat, animal fat and organs. No plants, no dairy, no supplements. You can look up the term Paleo Medicina and Carnivore Diet and things like that. The key part is zero plants, zero dairy and zero supplements because those all effect the immune system if you are treating an auto-immune/neuro-immune condition.
  22. @badhbt @1234567890 @puppylove @badhbt This is very interesting you say this! I think this is what I have too! I've tried to explain it but nobody ever knew what it was, not even neuro-optomologists. Ever since I was young the earliest symptoms I had started having these unusual electrical shock sensations in my chest and my vision would do this weird thing like the contrast got turned up! (not at the same time). The visual effect was like contrast, things would sort of be dark, but also bright at the same time and also the colors were sort of muted or different a little. It would last for several minutes and I think getting up and walking around would make it go away faster. I'm not totally sure what causes it, but it would seem to happen when brain fog would come on. Sometimes I thought neck posture was related to it. We could never figure out the cause. It was not like a brown out and closing in before syncope. Syncope didn't start until decades later. It was totally different. Fast forward about 30 years after that with no diagnosis and I've been having very bad health problems for the last 12 years including muscle pain, fatigue, tinnitus, shaking vision, neuropathy sensations like cold wet water or burning sensations all over body, and in the last year or two the symptoms have spread to many body systems including lack of tear production and digestive system not moving and some kind of reflux. Syncope, on and on. Somehow I got referred to a cardiologist because I wanted to have testing for my autonomic nervous system the neurally mediated hypotension etc. I then found out this cardiologist runs a dysautonomia center and I'm getting all the tests now. I was calling my condition Myalgic Encephalomyelitis, chronic fatigue syndrome, but that is a neuro-immune condition and is within dysautonomia, but I'm just learning more about dysautonomia now and how it effects the tears, digestion and all of that. I think I've had this all my life and it has just gotten worse and never could get diagnosed. I often asked neurologists for autonomic nervous system testing because they would never bring that up. I knew in recent years that my sympathetic nervous system was all messed up because I was extremely sensative to choline from eggs as well as any plant that contained a choline esterase inhibitor (there are many, blue berries, potatoes, on and on). It would cause much anxiety, function like a strong stimulant and also cause insomnia.
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