MTRJ75 Posted October 1, 2019 Report Posted October 1, 2019 A continuation off of my last post I mentioned that I started Bupropion yesterday. Been feeling terrible with on and off nausea today and worse overall pots symptoms than I’ve consistently had in a while. Also just noticed my blood pressure is higher than it’s ever been. It usually jumps around or is fairly good. But I’m getting readings between 127/83 to 154/101. The highest it’s ever been before was 140/95 a few years ago after a stressful trip to an out of state doctor. I am reading that this can be a side effect of the new medication. Not sure what I should do as there are no doctors around at this time and I’d really rather not an ER trip. Quote
DizzyPopcorn Posted October 1, 2019 Report Posted October 1, 2019 On 10/1/2019 at 12:10 AM, MTRJ75 said: A continuation off of my last post I mentioned that I started Bupropion yesterday. Been feeling terrible with on and off nausea today and worse overall pots symptoms than I’ve consistently had in a while. Also just noticed my blood pressure is higher than it’s ever been. It usually jumps around or is fairly good. But I’m getting readings between 127/83 to 154/101. The highest it’s ever been before was 140/95 a few years ago after a stressful trip to an out of state doctor. I am reading that this can be a side effect of the new medication. Not sure what I should do as there are no doctors around at this time and I’d really rather not an ER trip. Bupropion is an antidepressant that stimulates. Ine of its primary side effect is anxiety and increased alertness, from what I understand. Both those can increase your blood pressure. What was your bp before starting the med? Quote
MTRJ75 Posted October 1, 2019 Author Report Posted October 1, 2019 110-120/75 for most of the last year or so when sitting/lying down. Was able to finally bring it back close to that with a combo of cod oil and extra beta blocker tonight. Still nauseous and wired with muscle burning from arms through chest. Gonna miss my endoscopy this morning but finally caved and took some and call neuro when I wake. I’ve been flaring worse since stopping trazodone and starting bupropion (not that i was doing well prior to that either though which was reason for the switch and my initial post a week ago but BP was still okay then). Not sure what else it could be, though my first bed ridden pots attack was a year ago. I was on my back most of last October. Meds seem more likely than weather though unless it’s just random coincidence. Quote
Pistol Posted October 1, 2019 Report Posted October 1, 2019 @MTRJ75 - definitely calll your doctor when his office opens, this BP is not OK. When mine goes u[\p like that I take extra BB as well and it often is enough to drop it. Be well!!!! Quote
DizzyPopcorn Posted October 1, 2019 Report Posted October 1, 2019 2 hours ago, MTRJ75 said: 110-120/75 for most of the last year or so when sitting/lying down. Was able to finally bring it back close to that with a combo of cod oil and extra beta blocker tonight. Still nauseous and wired with muscle burning from arms through chest. Gonna miss my endoscopy this morning but finally caved and took some and call neuro when I wake. I’ve been flaring worse since stopping trazodone and starting bupropion (not that i was doing well prior to that either though which was reason for the switch and my initial post a week ago but BP was still okay then). Not sure what else it could be, though my first bed ridden pots attack was a year ago. I was on my back most of last October. Meds seem more likely than weather though unless it’s just random coincidence. Have you tried other antidepressants? Bupropion usually isnt a first line antidepressant from what ive been reading. Quote
MTRJ75 Posted October 1, 2019 Author Report Posted October 1, 2019 Trazodone was first with no effect, good or bad. Bupropion was second. My symptoms were at their worst so there probably was some anxiety. Took the be many times, several lying down, over a half hour after breathing exercises to, so who knows. Edit: Neuro has me stopping the Bupropion for a few days and calling him back Friday. I understand that's the right thing to do, but it means another week of torture with no progress. BP seems back around normal after sleeping a few hours at least. Haven't hit higher than 124 or 82 after a few tries today. Quote
MTRJ75 Posted October 2, 2019 Author Report Posted October 2, 2019 Highest reading this evening was 133/90. Everything else was below 130/90 while sitting, below 120/80 or below when lying down. It does seem the Bupropion might have had some negative effect. The elevated POTS symptoms remain though, so I'm hoping the med change didn't set me back too far. And we still have to go back to the drawing board to attack all the other symptoms with something else now too. Quote
bombsh3ll Posted October 2, 2019 Report Posted October 2, 2019 Are you on any other medication? The focus on psychoactive medication is something I would want my doctor to explain. Trazodone is a sedating antidepressant, buproprion an activating one. It may be helpful for your doctor to clarify the rationale for anything you try next, particularly if it is another psychoactive drug. B xxx Quote
MTRJ75 Posted October 4, 2019 Author Report Posted October 4, 2019 On 10/2/2019 at 2:34 AM, bombsh3ll said: Are you on any other medication? The focus on psychoactive medication is something I would want my doctor to explain. Trazodone is a sedating antidepressant, buproprion an activating one. It may be helpful for your doctor to clarify the rationale for anything you try next, particularly if it is another psychoactive drug. B xxx I'm sorry. I never saw this response. I'm on Cevimeline for dry mouth/eyes and Propanolol. The neurologist did attempt to explain something about norepinephrine and the imbalance of other wonderful chemicals in my brain. We also talked about histamine for a minute or two, but I can't remember exactly what he said. I guess he figured if going one way didn't do anything, then maybe going the other way would. I've really resisted any ******active drug for so long, but feel so helpless at this point, I finally gave in. Haven't been able to get a hold of him the last two days, so I guess I'm going the weekend without starting anything else new. The good news is that the blood pressure seems back to normal (maybe...I'm not even sure what is normal these days). The bad news has been basically everything else. Got so sick of sitting on the couch and suffering this week that I went and did something that had to be done, but I really shouldn't have done. I could literally feel something going on with the blood flow in my head and neck every time I got up and down. For 10 minutes of work, I had maybe my worst episode this year. Took more than a half hour afterward to get my heart rate below 100 and now two hours later it's finally more in the 80's than 100's, though it keeps bouncing up and down. I stopped tracking it. Don't even care anymore. Now I gotta find a way to feed the dog and myself and take him out. Meanwhile, I've been nauseous with my stomach churning, a scratchy throat, eyes that feel like they're going to pop out of my head, chest burning and everything looks like I'm staring at a bright light. And my arms keep going numb when I lift them. The joys of dysautonomia and Sjogren's together. How do you all live like this? It's such a helpless feeling. I had enough problems when I went to see the neurologist last week. Not only have none of those been addressed yet, but now it seems I've regained additional ones I didn't think were so bad anymore. That's the end of today's rant I guess, but there was no one else around to hear it. Jeez, maybe the ******active component is necessary at this point, lol. Quote
bombsh3ll Posted October 5, 2019 Report Posted October 5, 2019 @MTRJ75 I am sorry you are suffering. I think coming off the bupropion is sensible given the high HR and BP you have been experiencing, & hope you can work something else out. I do take a small dose of diazepam now & then which is very helpful for taking the edge off the distress. The first medication I was ever prescribed after presenting 5 years ago with classic symptoms & inciting event for the spinal fluid leak I have now been diagnosed with, was Prozac. It says a lot. Needless to say I did not take that for very long, however I was willing to try it at the time, not because my problems were psychological as the doctor believed, but because I had read that SSRIs could positively modulate the ANS in some people with orthostatic intolerance. If your illness is secondary to Sjogren's, would autoimmune treatment be something you could possibly look into with your rheumatologist? There are reports of people in that situation benefiting from IVIG &/or other immunomodulating drugs. B xxx Quote
MTRJ75 Posted October 5, 2019 Author Report Posted October 5, 2019 Rheumys won't treat (been to two) because blood work is clean. I'd be resistant to steroids anyway and there's likely no way I'd get insurance to cover IVIG. I've been treating the Sjogren's functionally with diet, supplementation, but no longer exercise sadly. I must have done a great job with my immune system though because nothing shows up. I've been resistant to SSRIs up to this point as well because of a horrible experience with one about 15 years ago when my digestive issues started. Quote
DizzyPopcorn Posted October 5, 2019 Report Posted October 5, 2019 Without an ssri right now, id pretty much be in a corner of my room fearing I'd die. It helps a lot, in my case. Quote
bombsh3ll Posted October 5, 2019 Report Posted October 5, 2019 17 minutes ago, DizzyPopcorn said: Without an ssri right now, id pretty much be in a corner of my room fearing I'd die. It helps a lot, in my case. That's great you've found a medication that helps you! For the right patient & the right indication, antidepressants can be highly beneficial. I am just not personally a fan of their use for dysautonomia from my own experience & the absence of supporting peer reviewed controlled studies, in the absence of co-existing depression or anxiety. B xxx Quote
Pistol Posted October 5, 2019 Report Posted October 5, 2019 I would like to add that SSRI, in Dysautonomia, are not used for the antidepressant action but rather for their usefulness of regulating neurotransmitters. Some people are afraid of taking them because they think they will be labeled mentally ill. I take Lexapro, since early on in my diagnosis. It has helped me a lot. I also find that many of us suffer — knowingly or not - from some degree of depression due to the symptoms we endure on a daily basis. SSRI’s will help with this human reaction as well. I disagree with @bombsh3ll that there are no studies regarding use of SSRI in Dysautonomia. It has been an effective treatment in regulating neurotransmitters for a long time and many studies have been done to prove that. It is a recommended treatment option in plenty of the literature published by authorities in the field of Dysautonomia in the US. Quote
bombsh3ll Posted October 5, 2019 Report Posted October 5, 2019 6 minutes ago, Pistol said: It is a recommended treatment option in plenty of the literature published by authorities in the field of Dysautonomia in the US. This is true, however I was meaning clinical trials where it is compared against a placebo in a patient group large enough to detect any clinically significant effects. I came across this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3956655/ which does not show effectiveness against a placebo, but of course a longer duration of use would be of more value than a one off dose. I believe there may be a couple of studies involving SSRIs showing favourable effect in episodic syncope, but have not come across anything demonstrating superiority over placebo in long term use in any form of chronic orthostatic intolerance. That isn't to say it doesn't help some people, & is more benign than some other drugs often tried with equally scant evidence. B xxx Quote
MTRJ75 Posted October 8, 2019 Author Report Posted October 8, 2019 Neurologist finally said...let's try Lexapro. I finally caved. I give up. I'm just their guinea pig now. Started today. Let's see what happens. Had a bit of a break last two days. Not that I felt okay, but didn't constantly wonder if I needed immediate medical attention. Today, not so much. Wonder if it has much to do with weather turning. Had been cooler, more raw, then nicer/warmer last couple of days, turning ugly again today. Plus, last October was when I went into full blown POTS for the first time. Couldn't sit up without feeling sick or feeling shaky for most of the month. Quote
Pistol Posted October 8, 2019 Report Posted October 8, 2019 @MTRJ75 I take Lexapro, it takes a while to kick in. You will not feel like a different person overnight, it is more like in a few weeks you will realize that you are not a miserable anymore. At least that what I experienced, and literature will explain to you that it takes about 6 weeks to go into effect. Quote
MTRJ75 Posted October 8, 2019 Author Report Posted October 8, 2019 Thanks @Pistol. I certainly won't be miserable if it takes away at least some of the things I've been feeling without making anything else worse. If it works on the neurotransmitters to calm down the CNS the way he suggests, hopefully that will be the case. If this doesn't work, hopefully he'll be agreeable to starting going outside the box for solutions. I've talked to some others on the same med. They said it has helped with allergies too and the neuro did mention histamines. But they also said it made them thirsty more frequently, which also makes sense. That's a concern for me with the Sjogren's being so bad since the weather turned. Quote
Pistol Posted October 8, 2019 Report Posted October 8, 2019 @MTRJ75 l personally have not experienced increased thirst with Lexapro. My M-I- L had Sjogrens, so I am aware of what it does to your body. Based on my experience with Lexapro I do not see why you would necessarily have to be concerned, but we are all different. I would say give it a good try, it did help me with hyperadrenergic POTS symptoms, and I hope it will do the same for you. Just know that you will not feel the effect right away, it takes weeks to start working in your body. Quote
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