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weathermandj's Achievements


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  1. I am on Tramadol and I take it for depression. I'm taking it in addition to Midodrine. The Tramadol helps my POTS. I get less periods of Tachycardia when I am on Tramadol. It can potentially worsen Tachycardia for some people. Tramadol is an SNRI in addition to it's opiate properties and other properties. Serotonin and Norephinephrine can increase vasoconstriction, if I remember correctly. This would lead to less pooling of blood in the lower extremities and POTS tachycardia being helped. That's my theory on how it works. But what works for one person may or may not help the next person.
  2. This sounds EXACTLY what is happening to me: "Sensory Storms" Dr. Luis Leon-Sotomayor, the cardiologist who documented the 1965 CFIDS epidemic in Galveston, Texas, described a type of neurological dysfunction that he called a "sensory storm." These storms affect the autonomic nervous system (regulated by the hypothalamus). A person experiencing a storm may first see an aura or sense that something very bad is about to happen. Storms produce sweating, pallor or flushing, elevated blood pressure, slowed respiratory rate, tachycardia, dizziness, and the feeling that one is about to lose consciousness. These autonomic storms are terrifying, but the effects generally pass within an hour. After such an experience a person may feel lingering tiredness or malaise... People who have warnings of impending seizures or seizure-like episodes, either in the form of a rapidly escalating sense of urgency, surges of strange sensations, intense fear or rage, "spaciness", or any kind of sudden perceptual disturbances can sometimes prevent their full manifestations by immediately withdrawing from all sources of stimulation and entering into a relaxed state through meditation, relaxation exercises, or self hypnosis techniques. This has the effect of changing the brain wave frequency to alpha waves.
  3. I have not had autonomic testing @Tobiano. Let me know how your testing goes! @ramakentesh I do feel shakey, however I feel extremely weak. I think there's adrenaline, but so much weakness and fatigue at the same time. Question...Can someone have POTS AND Inappropriate Sinus Tach?
  4. I'm so sorry to hear you're having the same issues as well. I know how scary it is. I will for sure let you know if I figure something out. In the mean time, have you done a med interactions check on drugs.com? Just curious what interactions you might have. I listed some of mine in my previous post. Just curious, have you asked your doctor about these episodes?
  5. I looked up some of the interactions. My doctor said that Serotonin Syndrome is rare, plus I started getting these "POTS attacks" or whatever I should call them lol, before I started those meds. Tramadol actually helps my tachycardia. If I miss doses of Tramadol, I am in big trouble with my POTS to the point I'm almost bedridden. That's how much Tramadol is helping me. Issie is another who is helped by Tramadol. Then the Trazodone and Mirtazapine help me sleep. So it's difficult to stop those meds. I can talk to my doctor but he has a hard time finding sleep meds that work and we got it down to what I'm on now. I get an attack and it lasts only a few hours and is gone afterwards for maybe 3-4 months before it happens again. I kind of doubt it's Serotonin Syndrome because why would it go away in about 4-5 hours after it starts and not come back again for a few months? Serotonin Syndrome, from what I've read on it, escalates to more severe symptoms if the meds causing it are not discontinued immediately. My body temp is normal as well. I'm concerned about the heart rhythm interactions listed below. ondansetron ↔ alfuzosin"Using alfuzosin together with ondansetron can increase the risk of an irregular heart rhythm that may be serious" That is actually something I need to look into. I can see stopping the ondansetron/Zofran. I just started Zofran in the past month and have not had an episode since starting it, so I know this can't be causing it. But, I think I'll stop the Zofran because this could become a problem in the future. trazodone ↔ alfuzosin This is one that may be a problem, even now. I dunno for sure. But it says irregular heart rhythm with this combo. I will talk to doctor about this. Trazodone seems like it may not be a good fit for me. metoprolol ↔ midodrine Using metoprolol together with midodrine can affect the rhythm of your heart. Need to talk to doctor about this one too. Thanks for suggesting looking this up on Drugs.com. It has helped me. Thank you.
  6. Thanks @kellysavedbygrace and @alex74alex. I appreciate the added info and suggestions. I did wear a heart monitor and I've had two doctors, including one that Cincinnati Children's Hospital Genetics Dept. recommended, tell me that I have POTS by the looks of what was happening on the Holter Monitor test and the TTT I had was positive for POTS. My HR usually goes down when I lay down (and did on the TTT), but shot up when they tilted me up. That's what usually happens. However, 3-4 times a year or so, I get incidents of this high rate while laying down as well as standing. Keep in mind my HR does go down to 200 bpm laying down and goes up past that if I stand up, which is difficult. So that's still POTS I would think if it's going up when I stand up. Unless I have POTS AND another thing going on that hasn't been caught yet. Structurally, my heart looks fine. Echo was fine. Maybe it's just autonomic dysfunction causing all of this; making my body do whatever it wants to my HR. I'll keep my eye on the Midodrine thing you're talking about alex74alex. Normally, my BP is normal (taking heart meds), but I do get spikes here and there, including lying down, on isolated incidents. I'll ask my Pharmacist about interactions and see what he says. The only problem is that I need a beta-blocker for my high blood pressure (I have hypertensive POTS) and high HR, the Florinef for the POTS, and the Midodrine, all of which I believe helps me quite a bit, even though I get these attacks still. The others help me with sleep and POTS. Tramadol is helping POTS quite a bit. Stopping that causes me to get POTS flares all the time. IDK, I shall talk to the Pharmacist. They know more about meds than doctors in terms of interactions and side-effects.
  7. I'm a 24 year old male and my hair stylist says I'm not losing any hair right now.
  8. weathermandj, have you ever taken your HR during the night?, I just got a HR monitor and have been wearing it to bed and noticed that HR is getting up to 140-150 while I'm sleeping (I set it right before I fall sleep and stop right when I wake up, so I know it's not from moving around). So the last few nights, if I woke up, I looked at my wrist and sure enough my HR was well above 100. I don't even feel like I sleep that badly - I usually only wake up once or twice a night, although I am tired in the morning. It would be interesting to know if you're getting similar surges at night and maybe that's what's waking you up so frequently. I watched this the other day: http://www.csfinfo.org/node/299, found it linked somewhere on here. That doctor seems to think people with POTS (or I guess just autonomic dysfunction) have a bunch of adrenaline surges at night which either wake them up or cause micro-awakenings (so they don't even realize they're awake) and are never able to get into deep sleep, which then causes fatigue. Pretty interesting. Good idea! I will invest in a monitor that can record. I have a pulseometer that I can use to get the current rate, but it doesn't record through the night. I could put it on my finger when I wake up and see what my HR is doing. I like your idea. Thanks.
  9. I do want to add that IV saline helps me. That's natural from what you said.
  10. @badhbt Yeah, I'm on Metoprolol Succinate 200 mg PO QD. Was taking Propranolol ER 160 mg PO QD before the Metoprolol. I like Metoprolol best. @alex74alex Yeah, I can tell you hate pills. lol Usually my BP shoots really high when this happens. Paramedics have been called in the past. SVT came up before on the monitors, however they never have told me anything abnormal is going on with my heart rhythm. Yes, 200 bpm laying down. Last summer the paramedics even recorded 170 bpm laying down on the stretcher. My family is just so tired of me dialing 911 when this happens. I get yelled at for calling it when this happens. And I'll even wait an hour before calling 911. I don't understand why they're so against me calling, but this happens 3-4 times a year to me. My chest will get tight, BP shoots up, and fast HR. It's nearly impossible to walk when this happens. I'm too weak to stand up and my HR then starts going higher than 200 bpm when I stand up. I'm honestly scared about it because I don't know when the next time it's going to strike and I don't know if there is a treatment I could take when it happens so I don't have to use 911. I take the Florinef and Midodrine too and this still happens a few times a year. I am always skeptical with natural stuff because most of the time it's not strong enough. I've tried natural supplements for anxiety and I'm currently in CBT therapy and exposure therapy for my anxiety and OCD. I just don't notice a big difference with it. When I get these attacks, deep breathing hasn't helped. That is one natural therapy I've tried. Up to now, I would give it an hour to go away, and it usually doesn't go away and after an hour I dial 911. It's to the point I'm so weak that I have to crawl on the floor. Anyone else get these "attacks"? I thought it was just POTS. Am I alone with this?
  11. Yeah, it can cause Serotonin Syndrome if you take other Serotonergic drugs with it.
  12. I had a sleep study done less than a year ago because my sleep quality is horrible. It takes me a few hours to fall asleep some nights. During the sleep study, I woke up every 7 minutes in the night. That was with sedatives for the study! My NE levels are normal. I just flat out can't sleep well. My sleep doctor won't even let me drive anymore because of my poor sleep and fatigue + brain fog issues. I haven't driven in over a year now. :/
  13. Every once in awhile, I'll get a major POTS flare where my HR gets to 200 bpm and above. It's hard to stand up and walk. This HR occurs while sitting or lying down and only gets worse when I stand up. Totally out of breath, etc. Is there a special pill my doctor could prescribe me to take when this happen to get my HR under control? Or should I dial 911 when this happens? My family doesn't want me to dial 911 when this happens and I don't know the course of action I should take and if any treatments for this exist. Plus, I wanted to get answers for this because summer is coming up and my POTS gets worse in the summer. Thanks.
  14. Saline IV's have helped my POTS flares while in the hospital ER. Who could I talk to about IV treatment's? I don't have a neuro I see. I have seen someone say they had it done and a home health care nurse came to their house 3 times a week. My aunt is a home health nurse who could do it. I'd just need a script I guess? This treatment helps me.
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