Jump to content

Jason_X

Members
  • Posts

    38
  • Joined

  • Last visited

Everything posted by Jason_X

  1. Mine is typically low. 5000 iu/day did not bring my levels up at all. 7000/day brought it up a little. I’ll take 10,000/day if I haven’t taken it in a while. I seem to recall reading a study claiming that vitamin D supplementation was useless, but noticed that they only supplemented ~500/day if I remember correctly. It looked like a study designed to fail. On the other hand, I also remember reading a study claiming that vitamin E supplementation was useless. I then found articles on the Life Extension website that explained that most Vitamin E supplements were the alpha version of E, which they considered to be worse than taking nothing at all. I don’t know enough about vitamin D supplements to know whether there would be problems with the supplemental forms of it.
  2. I tried the pills and years later I tried the patch. I was unbearably tired without much relief from tachycardia. Like the other poster said, we have unpredictable sensitivities. I can’t take Benadryl, but it’s perfectly fine for almost everyone else. You won’t really know unless you try it.
  3. I did growth hormone injections for a while almost 20 years ago. It GREATLY reduced my intolerance for exercise. I could exercise like a normal person for a while. However, it was VERY expensive and the price tripled, so I had to discontinue treatment. I was paying out of pocket with an out of state doctor that was not covered by insurance. I then went to a mainstream local endocrinologist (covered by my insurance) with the hope that he’d by sympathetic and encouraged by my positive results. He strung me along for a while, but would not consider growth hormone. I finally gave up.
  4. MikeO, Thanks for the info! I tried Metformin years ago and it seemed to aggravate my tachycardia and insomnia. However, I'm on Berberine now and I'm tolerating it fine. I keep lowering my carbs, but I haven't tried going completely carb-free. More exercise would be great, but I can't tolerate more than a little exercise these days without increased heart rate for 12-24 hrs and certain insomnia. I've tried some mild intermittent fasting and find it very unpleasant. If I try one, I'm leaning towards Tirzepatide over Semaglutide since it seems to be more effective with slightly reduced side-effects.
  5. Does anyone here have any experience with either of these? My understanding is that these these are medications that are approved for treating Type 2 Diabetes, but many doctors are prescribing them off label for weight loss. My fasting glucose and A1c levels are borderline pre-diabetic and have been steadily getting worse despite improving my diet. My doctor is open to trying either of those medications. I have inappropriate sinus tachycardia (treated with Ivabradine (Corlanor) and low dose Bystolic), and I’ve also noticed that my symptoms seem to get worse if I eat anything that causes my blood sugar levels to bounce. I’m wondering whether my heart rate (and related symptoms) might be better controlled if my glucose metabolism were better controlled. My insomnia (related to the tachycardia) has gotten worse over the years as my fasting glucose and A1c levels have deteriorated. This is my primary motivation for looking into this. It’s a serious issue for me and affects every aspect of my life. One concern is that both of those meds can slow stomach emptying. I already have mild (stage 1) gastroparesis, and this may make it worse.
  6. My sleep quality tends to be absolutely terrible. I’ve always been an extremely light sleeper. Here is what helps for me: CPAP machine: A sleep study didn’t detect apnea, but it did show several Respiratory Effort Related Arousals (RERAs). Light snoring will wake me up before an apnea occurs. I LOVE my CPAP device. My sleep quality improved dramatically from it, but did didn’t fix everything. I use my CPAP even if I take a nap. Avoid Monosodium Glutamate (MSG), Carrageenan, autolyzed yeast extract, and Torula yeast. They are all pretty much the same thing in that they contain free glutamates. All will increase my heart rate and destroy my sleep quality. Meds to slow my heart rate: Corlanor (Ivabradine) and Bystolic: I will not sleep well with an elevated heart rate. Both of these meds degrade my sleep if taken in higher doses, but a small dose is definitely helpful if my heart rate is up. Amitriptyline: I can’t take it anymore because it speeds up my heart. However, it used to work REALLY well in tiny doses. The smallest pill is 10 mg, and ~2.5 mg was enough to improve my sleep significantly. I used to break it up. Gabapentin: 100-300 mg. This stuff also GREATLY improves my sleep quality. It’s supposed to be safe in that it’s virtually impossible to die from an overdose from it. It is commonly prescribed in doses >1000 mg/day for nerve pain. It’s also used in high doses for seizures. I know someone who takes +2000 mg/day. However, it seems to lower my mood with time, and I have horrible withdrawal if I discontinue it too abruptly. I’ve spoken to two doctors who have never had this reaction from their patients, though I’ve seen others report similar withdrawal symptoms online.
  7. I tend to have problems in the morning. I have stage 1 gastroparesis (along with inappropriate sinus tachycardia), and I’ve attributed the morning problems to my stomach quickly emptying out over-digested food that’s been sitting there all night. It can be frustrating because my stomach is uncomfortably slow most of the day, but the lower digestive system is much too fast in morning. I try to make sure that I’m up and moving around for about an hour before I leave the house. That gives my digestive system a chance to flush anything out while I’m near a bathroom. It’s less convenient while traveling.
  8. I've been on Corlanor for years. It's MUCH better for reducing heart rate than beta blockers. I suspect that it reduces sleep quality a little, but that's the only side effect I'm aware of. I'm a guy, and I'm not aware of pregnancy issues. My insurance refused coverage for undisclosed reasons despite my heart doctor's very vocal insistence. They told him it was because it was because of "off label" use, but he says that virtually all of his prescriptions are technically off-label. I live in the US, so I order mine through a Canadian pharmacy.
  9. I frequently have issues with pounding heart sensation even though my heart rate is low (<70 bpm). I have very low anxiety, but it makes it hard to sleep. I take Corlanor and Bystolic to help control heart rate, and it does seem to reduce the sensation of pounding, but not completely. (typo fixed)
  10. FYI: I get the Ivabradine from Canada for ~$40 per month at 7.5 mg twice/day. The generic Bystolic is about $13 month at one 2.5mg tablet once/day. I actually break the Bystolic in half and take in divided doses (1/2 in morning, 1/2 at night).
  11. Your doctor may be unfamiliar with using Canadian pharmacies. It's completely legal and the doctor simply FAXes the prescription to them. I just happened to come across a doctor who does this so that his patients are able to afford Ivabradine. I later transferred to another doctor (for logistical reasons) and the new doctor was fine with the Canadian pharmacy. Bystolic is supposed to be cardio selective at doses less than 10 mg/day and presumably would not be a significant risk to asthma. Both acebutolol and metoprolol exhibit less selectivity at higher doses as well.
  12. I live in the US, but I get my Ivabradine and Bystolic (Nebivolol) from a pharmacy in Canada. It's about one-tenth the cost of what they charge in the US. My cardiologist will FAX the prescription to them. My insurance refuses to pay for both Ivabradine and Bystolic unless I have actual heart failure. Acebutolol made me incredibly tired and severely disrupted my sleep.
  13. I don't know if it's direct or not. I just know that it the resting rate drops, the pounding and fatigue drops. I have extra Bystolic pills available for whenever I need something beyond the usual daily dose of Ivabradine + Bystolic. I've tried lost of beta blockers and Bystolic. is the one that has the fewest side effects. I've seen several cardiologists over the about 30 years who were clueless about this issue. Some of these were highly recommended cardiologist. When I finally found a cardiologist that knew what I was talking about, he said "Those cardiologists were plumbers. I'm an electrician." I think that the key to finding an effective cardiologist is to find one that is an electrophysiologist.
  14. I was just going to make a similar post tonight when I saw yours. My heart pounds if the resting rate is elevated the tiniest amount. I feel pounding if the resting rate is around 70 or above. The pounding is worse the higher the resting rate. Any sensation of pounding means I get severely disrupted sleep. I'm a VERY low anxiety person, so it's not anxiety. I take Ivabradine (Corlanor) 7.5 mg twice daily, and Bystolic 1.25 mg twice a day (1/2 of a 2.5 mg tablet). This helps quite a bit, but it still disrupts my sleep even my resting rate is even near 70. Tonight, I feel it pounding and it’s only 68. I tried propranolol a long time ago. It did a great job of slowing down my heart, but I felt terrible and it severely disrupted my sleep. Bystolic seems to be the beta blocker with the least disruptive side effects. I can drink a LOT of coffee without any significant heart rate elevation, but a single glass of wine (or beer) or a half tablet of Benadryl will shoot it up to 75-80 bpm and I’ll feel terrible and extremely fatigued, but I can’t sleep. Monosodium glutamate or carrageenan will set me off too. I just checked my blood pressure and it’s slightly elevated (131/77). I’m not sure, but I’m beginning to suspect that slightly elevated blood pressure may correlate with the sensation of pounding and insomnia. Cardiologists tends to say "it's only mildly elevated. It shouldn't be bothering you." I wonder if I should take some Benadryl before my next visit. Edit: I also have stage one gastroparesis and a removed gall bladder.
  15. I did pretty well. Male in my mid 50s. Slightly overweight. Taking Lisinopril for mild high blood pressure. Some kidney damage from taking PPIs in the past (to address GERD because of gastroparesis) Infected in early July 2022, so likely the BA.5 strain. Three Pfizer vaccines, with the most recent on in December 2021. I never had a fever. Symptoms: Stuffy head. Mild cough. Fatigue that started a few days after the initial symptoms. The fatigue lasted 1-2 weeks and faded gradually. I was concerned about heart symptoms because I have inappropriate sinus tachycardia, but it wasn't a problem.
  16. I looked into this test last year. The complication is that I am now on blood pressure meds because of high blood pressure. I saw a comment above about being off meds for 72 hours for the test. I was told that I needed to be off these meds for two weeks. My hormone doctor was reluctant to have me off the BP meds that my heart doctor prescribed. My heart doctor was unfamiliar with the hormone test. I could never get a plan from them to get tested.
  17. Thank you for posting this. I've had fairly good results with Ivabradine. I'm in the US and my insurance won't cover it despite strong objections from my heart doctor. It's insanely expensive, so my doctor works with me so that I can get it from a Canadian pharmacy for one tenth the cost. I'm not sure, but I think that disrupts sleep slightly, but it's MUCH better than beta blockers. I have never heard of hybrid ablation until now. My heart doctor warned me to not let anyone talk me into getting ablation. That was a few years ago, and I don't know if he considered hybrid ablation.
  18. The insurance companies are horrible. They wouldn't cover my prescriptions either, despite my cardiologist doing everything they asked for. I've been getting the generic via mail order from Canada and paying out of pocket. Thankfully, my doctor is willing to work with me on this. The Ivabradine slows my heart without the awful side effects of the beta blockers, and I've tried LOTS of beta blockers as well as Clonidine.
  19. I had severe insomnia and fatigue with propranolol. Bisoloprolol was better, but Bystolic was much better. I've used Bystolic for years, I just word from my pharmacy that my insurance has decided that they don't want to cover it anymore. I'm also using Corlanor (Ivabradine) that insurance had initially covered but also decided that they don't want to pay for it. I"m noting getting Ivabradine (generic) from Canada via mail order. I may see about getting generic Bystolic from Canada was well.
  20. My GI doctor first did an endoscopy where he was able to rule out other problems (cancer, direct h-pylori culture, etc...) before having me do the gastroparesis test where you eat radioactive eggs. I was hoping for an easily curable ailment, but was diagnosed with stage 1 gastroparesis with the radioactive egg test. The intensity varies. Some weeks are better than others. Eating multiple small meals helps. Gabapentin definitely makes it worse. I also have inappropriate sinus tachycardia (IST) and mild POTS symptoms. My heart doctor said that about a third of his IST patients have gastroparesis. Acid reflux while sleeping can be a problem, but be careful with PPIs, since chronic use can cause kidney damage. I have reduced kidney function from PPIs, so I don't use them at all anymore.
  21. I have tried pretty much every sleep medication that is supposed to help sleep (both on an off label). My sleep doctor is also a really good psychiatrist who knows his meds really well. The anticholinergic meds tend to speed up my heart rate, and even a mild elevation in heart rate will distrust sleep. I get the absolute best quality sleep with Gabapentin, but it tends to slow down my stomach (I already have gastroparesis). Lunesta also works well, but it’s not quite a good as Gabapentin. Lunesta makes it really easy to sleep, but the quality isn’t as good as Gabapentin. I also find Gabapentin REALLY difficult to get off of if I’ve taking it for a long time, so I try not to use it for more than about 2 weeks at a time.
  22. I’ve tinkered with this a bit with limited success. I have an issue with inappropriate sinus tachycardia, and my resting heart rate makes me tired, yet disrupts sleep if I don’t take a beta blocker and/or Ivabradine (Corlanor). I tried this to see whether it might help to reduce my heart rate and/or make it easier to sleep. Results I actually fell asleep once with this because I felt so relaxed. This gave me hope that this technique might be useful. A few times, it seemed like it may have been mildly helpful. However, most of the time, it was just painful and not helpful at all. I tried it about ten times, and then near tried it again. Details I already had a TENS device for another issue, and I ordered additional electrodes that could be attached with a clamping mechanism. I attached one of the clamping electrodes to my ear (tragus), and I attached a standard pad electrode to other areas. The clamping electrodes were cheaply made, and I had to wrap a rubber band around it to hold it tight. It also only had an electrode on one side, which reduced the electrical contact area. The weak point of the circuit was the ear electrode, and it was painful if I cracked up the TENS power at all. I was usually really hard to objectively determine whether it was being helpful. My pulse rate is highly variable from hour to hour and day to day. Like I mentioned early, I actually fell asleep once while experimenting. Sometimes, it deep seem relaxing, but it usually required cranking up the TENS unit near my pain threshold for my ear. The ear electrode had very little contact area, so it didn’t take much to cause pain there. Determining where to place the other electrode (standard TENS pad) was also uncertain. I tried a variety of places, and it didn’t seem to matter much.
  23. My original MRI which detected the cyst was roughly 1990. They used the contrast agent at the time which made it much more easily visible than the can ~10 years later without the contrast agent. I don't remember what the contrast agent was, but it was injected with an IV drip into my hand during the procedure.
  24. I realize that the original post was over 2 years ago, but I think that it's still a good idea to leave something on record in this thread. I have a pineal cyst as well as REALLY bad sleep problems. I’ve been told a variety of things from various doctors about it. I think that the most truthful ones say “I don’t know.” Some have said that it’s completely harmless and not the cause of any symptom. I’ve had one or two say that it’s very possible that it could have a role in my sleep problems. My sleep problems got serious in the early nineties. An MRI showed ~ 1cm cyst at the time. My neurologist at the time said that I might want to get a new scan about every 10 years or so. I got another scan about 11 years later, but the doctor didn’t order the contrasting agent, so it’s pretty hard to see, but it seemed to be slightly bigger. I’m long overdue for another scan.
  25. I am a scientist and I worked on designs for detectors for detecting a variety of electromagnetic wavelengths. I have good news. Low frequency electromagnetic waves in our environment are harmless, in my experience. There are limited ways in which an EM field can interact with a human body. With high frequency waves, the energy of the photons interact with the molecules. This is usually referred to as “ionizing” radiation, and occurs when the energy of the photos is high enough to cause chemical reactions. Gamma rays can cause cancer. Ultraviolet light can cause a sun burn. As you go lower in frequency, visible light won’t cause any harm. As you go lower, you might feel the warmth from the infrared of a light bulb. The photons from a 5G cell phone have about 1/10,000 the energy than the highest energy photons from your flashlight. We are constantly being bathed in harmless and NECESSARY infrared radiation from our surroundings. Okay, so what about non-ionizing radiation? For this case, we’ll consider either static or relatively slowly oscillating fields (5G and below). Static: Your body has fairly high electric fields across all of your cell membranes, even in your brain. We live in a natural constant electric field just by being on the surface of the earth. Walking across carpet in the winter will typically result in over 1000 volts between you and the door knob. These fields are harmless. 5G cell phone frequencies and below: For oscillating external fields to interact with your body, they’d need to couple energy into your body. Your body is a terrible antenna, so this just doesn’t happen in any meaningful way. A microwave oven is able to heat water molecules because it’s essentially holding the food between two plates (efficiently forcing the field through the food) and blasting it with about 1000 watts of power. Virtually all of the power gets channeled into the food. This frequency is MUCH too low to cause direct ionization, and it heats by causing the water molecules to vibrate. Your cell phone operates at about 15 watts, and virtually zero percent of that energy gets absorbed by your body. Any energy that is absorbed will be harmless, low intensity heat. Consider a 15 flashlight bulb next to your head. You might feel a little bit of warmth if the bulb were pressed against your skin, where all of that energy is concentrated where the bulb is touching you. However, if that radiation is spread throughout your skull, it would still heat your head less than if you were wearing a winter hat. Since your head is a terrible antenna, only a miniscule fraction of that 15 watts would get absorbed by your head. Some people have hypothesized that cell phones might be able to disrupt brain signals when the phone is held next to someone’s head. However, the induced electric fields from your cell phone will be MANY orders of magnitude lower than what naturally exist across the cell membranes in your brain. I did some calculations a while back, and I seem to remember that the natural fields were millions or billions times higher. Occasionally, you’ll see an article published about detrimental EMF effects. The problems that I’ve seen with these reports include They tend to report numbers that are barely statistically discernible The data seems to be cherry picked. It can’t be reproduced by anyone else (very important) Some of the original studies were proven to be fraud, and the researcher was fired Interesting story: I helped a scientist run an experiment in a magnet laboratory at MIT years ago. They were measuring electronic properties of materials in extremely high magnetic fields. We had to left our wallets out of the room because the magnets would erase any magnetic strips. However, the facility had zero concerns about humans being in the room while the experiment were being run.
×
×
  • Create New...