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Everything posted by jklass44

  1. @bombsh3ll Hi there. Your situation seems similar to mine - I can't tolerate beta blockers. I was hesitant to try Ivabradine only because of the price (my insurance doesn't cover it). That being said, I'm 4 weeks into it so I can tell you about my experience with it thus far... My resting heart rate on average was about 80-90bpm. The drug was pretty fast acting for me, by about day two I already noticed a decent drop in my resting heart rate, not necessarily my standing heart rate. Sitting or laying down it's anywhere between 40-60, which honestly feels very weird. I find I get a lot more palpitations with my heart rate this low, however, this is more of a normal person resting heart rate anyway so maybe I'm just not used to that aspect? Standing up has been very hit or miss. Sometimes it is normal, other times it will still rise dramatically (maybe only being 4 weeks in has something to do with it). The main symptom my cardiologist warned me about was the visual changes some people experience, but I haven't experienced anything like that. My dizziness/lightheadedness seems to be decreasing, I still have chest pains (seems like nothing will "cure" that for me), and as for my blood pressure Ivabradine only effects your HR, so I'm still on my Clonidine to control my hypertension. The pamphlet that came with my prescription states that you shouldn't take Ivabradine if you have a resting HR lower than 77bpm, so I would consult your doctor or pharmacist if you are concerned about that. Perhaps starting with the lowest dose might be beneficial?
  2. @Sam4877 Have you ever had a stress test or stress echo? I also second the log idea! I kept logs and even made little videos on my phone to show my doctors how severe my hypertension and tachycardia actually was. I tried 5 different beta-blockers before my doc decided I wasn’t a candidate for them. So I’m currently on Clonidine for my hypertension and I just started Ivabradine a few weeks ago, which has - so far - helped limit the amount of tachycardic surges I have. Best wishes.
  3. So glad to hear that it’s working for you! If I remember correctly, you fought hard to get that port, so it must feel great that it and the IV therapy is helping you to be well and even increasing your energy levels. A victory indeed!!
  4. Hi there. I know what you mean by “it fits, it doesn’t fit” as I have thought that way before too. Accepting a diagnosis is tough. I think it’s important to remember that dysautonomia or POTS is not just about tachycardia. Majority of the time, my heart rate from supine to standing will increase about 60bpm, but then there are other times where it will only increase about 20bpm. Those are what I consider my “good days”. You’ve listed a number of other symptoms that definitely fit into under the dysautonomia umbrella. What kind of diagnostics did your doctors do to confirm POTS? Best wishes. Hang in there!
  5. @dancer65 My family doctor gave me some samples called Cambia (comes in a powder) and Relpax (tablet form). They aren’t used to prevent migraines but they’re supposed to stop a migraine that has just begun or is already in progress. Unfortunately, they didn’t work for me, but we all react differently to medication so I thought I’d just throw those out there for ya! Good luck and best wishes.
  6. @Pistol That’s very true - to have things ruled out. I’m glad you don’t have to worry as much now... Thanks for the info!
  7. Hi there. I’ve lived in BC all my life. I’ve never had my GP prescribe IV fluids but I’ve received them in the hospital in the past during flare ups. I found this website that states emergency costs at different hospitals. I’m sorry I couldn’t find info on walk-in clinics, regular doctors, etc. http://www.david-cummings.com/documents/canadian_hospital_rates.htm Medication prescriptions are generally covered if you have insurance. However I recently started Ivabradine and because it’s so new in Canada, it’s not covered and is very expensive. Are you thinking of getting some sort of coverage while you’re here? All the best!
  8. @Pistol Did you have to ask for your angiogram or did doctors suggest it to you? A specialist gave me the option last year but I said no due to the fact that my cardiac MRI came back pretty boring. Maybe I should go back and ask for it...
  9. I’ve dealt with chest pain for years, it was one of my first symptoms to arise actually, and like you’ve I have been to the ER for it in the past due to it waking me up in the middle of the night. Many cardiologists did their own work ups and kind of put me through the ringer in terms of diagnostics, but everything always came back normal. To this day I still get very scary chest pains, both at rest and during activity, and it’s actually worsened on beta-blockers so I can’t take those. No doctor has been able to explain it, but due to all my tests being normal I’m not as worried about it as I once was. Definitely call your cardiologist and see if you can get an appointment just so they can check you out and make sure everything is still OK. In the mean time, if you’re ever worried just go back to the ER. It’s what they are there for even if it turns out everything is fine. Find some good distractions (music, video games, family, etc.) and best of luck!
  10. Glad to hear it’s relatively well controlled then and that you have access to IV if need be! I only tried diltiazem but had a bad reaction to it so we never tried any others. It’s a game of trial and error that’s for sure...
  11. @voxel I’ve also suspected some sort of gallbladder thing because I also get pain in my upper right side under my rib cage. But yes I will have the GI issue checked out sooner rather than later. @Pistol I’m also curious about your blood pressure! My body just doesn’t react to the meds that should essentially lower it.
  12. Hi everyone. So I'm sure the majority of us are familiar with the vicious cycle of symptoms that we experience on a daily/weekly/monthly basis, but I'm curious to know something... When your symptoms appear or you have surges, does everything happen all at once or does it alternate? For example, for myself, I'll have a week or so of headaches, migraines, dizziness, etc., then the following week will be the GI issues such as abdominal pain, bloating, diarrhea and then the next week or two or whatever will be cardiac symptoms like severe tachycardia, chest pains, shortness of breath, palps, etc... It's so frustrating having everything jump around like that! I feel like I can't plan my life accordingly. The week of GI issues (whenever that happens to be) I can usually still go out and see friends/family or do my grocery shopping, errands and such, however the other symptoms I'm always so fatigued and can barely get out of bed. Maybe I just experience my symptoms this way because they're not very well controlled yet? I have an appointment with my cardio later this week because I've been so hypertensive lately (160/110 give or take) so we'll see what comes of that I suppose. Anyways, I was just wondering what other people's cycles look like. Have a great weekend
  13. @Pistol Sounds like I’m having a similar journey. I’m a veterinary nurse so I relate to how hard it is to keep working in that environment. I also purchased The Dysautonomia Project over the summer and it’s a great read! I definitely recommend it to others who feel they are struggling. @WinterSown Thank you for posting that link! I will for sure give it a read later tonight.
  14. You guys are wonderful! I was thinking about this the other day... I think for me I need to start with self-acceptance. That part was harder than I thought it would be, even though I already suspected I had POTS. Next is sharing and educating friends and family in order to help them understand and spread awareness!
  15. Well, in my opinion, that sounds like a doctor that is not well educated on POTS... There is more than one type and hyperadrenergic POTS may actually see an increase in blood pressure upon standing up. Regardless, it's good that they're testing you for pheo and that you're seeing a nephrologist soon. Good luck with everything, wishing you all the best!
  16. I’ve been having surges all this week and can’t seem to shake them. Usually lying down or taking the day off helps a little bit for me with the “resetting”, but it isn’t this time. Heart rate is constantly high, BP is all over the place, I’ve had a headache for about two weeks now... Do you maybe need to rest a little extra due to the move? I know you said you didn’t lift anything heavy but it sounds like your body is exhausted! Take it easy. I hope you find some relief.
  17. If the Clonazepam is no longer working I would contact your doctor or specialist and discuss either an increase or perhaps trying something else instead. They would know best. I tried Ativan a few years ago and felt like absolutely poop the day after. Felt like I had been hit over the head and couldn’t see straight. Only tried another two times after that with the same result before I said no thanks, never again! Best of luck to you.
  18. I also just drink 1 cup in the morning and that's it. Even the odd times when I have more or less it doesn't really make a difference for me. For some, they tolerate soda better than coffee, but that's up to you. Try it out and see what happens! If you don't feel well after, then you know for sure
  19. I was always super concerned about this, and I too asked my doctors about it (this was before I got a diagnosis so they didn't really have a good answer for me). I had a cardiac MRI done about a year and a half ago - at that time about 5 years into symptoms - and literally the only thing they could find that was abnormal was that my heart was on a weird axis. Other than that and an intermittent heart murmur, my heart muscle itself is completely normal. It's kinda weird and surprising, but hey I won't complain!
  20. My HR is around the same as yours after I climb stairs. Showering it can go even higher so I really have to take it slow and remember not to turn the water to boiling temperatures (my favourite thing!) I've also had body temps as low as 33C (91-92ish F) which is the worst! Dysautonomia definitely throws off your temperature regulation. Hope you're feeling better. All the best!
  21. I tried Metoprolol first, the lowest dose, and it knocked me right out. I was so tired all the time and it made my brain fog worse. I was switched to Propranolol and I had some sort of allergic reaction to it. Intense chest pains, hives, rashes, etc. That being said, it's definitely worth a try. We all seem to react a little bit differently to beta blockers so your daughter might do well on it. Good luck, wishing you guys the best.
  22. @StayAtHomeMom No I take Clonidine at the moment. I too wondered if it was medication related.
  23. I had severe scoliosis as a kid and had surgery for it when I was 13. I still have an area around my left shoulder blade that has lost a lot of sensitivity (almost numb but not quite). My dysautonomia symptoms didn't start and begin to really flare until I was about 18... That being said, I recently asked a neurologist I saw if my spinal issues or scoliosis surgery in general could have caused POTS. He didn't really have an answer for me. He didn't say much at all really... I guess because 5-6 years in between is a long time so it's hard to say for sure Ive always thought to some degree that the surgery caused some sort of problems, because it's a major operation and of course there are so many nerves running along and around your spine, but I really have no idea if it triggered dysautonomia. I still have mild back pain nowadays which is usually worse during my time of the month or a symptom flare up.
  24. I get that from the sun too. I also get goosebumps in the shower but only on like one arm or my chest or a thigh or something. It's super weird!
  25. Interestingly enough, I've been having an awful "brain fog" week. Can't focus, can't concentrate, feels like it takes a week to get out one sentence... Also been very dizzy despite normal vital parameters as well. Youre not alone, hang in there! Hopefully your appointments next month can help you out.
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