MTRJ75

Was hoping to avoid it this year and in fact, this is the latest in the season I've gone rash free, but the beginnings of my first one of the year are starting to show up on my wrists yesterday and today. Short background, I've had these rashes multiple times every year between August and November since 2013 (which is the year I also had Pityriasis Rosea, though I don't particularly know if there's a connection). Some of them have been week or two long annoyances. Last year, around Thanksgiving was the worst one yet. Most of my body was covered in this painful, swollen mess. So of course, that's led to some anxiety with this one and what it has the potential to turn into. As hard as I've tried to avoid any type of steroids for this issue, I've had to use a few topicals the last couple of years and last year even needed the dreaded Prednisolone pack. I know this is not a sustainable approach year after year because using these impactful medications can have negative long term effects. My PCP is not really of the same mind and seems content to hand these out liberally. My other option is a long, difficult trip to a dermatologist, who I'm guessing may be stumped as well. I'd rather avoid both. Are these "seasonal" rashes a part of anyone else's suffering? Are they another nervous system thing or something else and has anyone found any successful alternative approaches. to cut them off early on in the process? Really not looking forward to this again.

I'm sorry you're dealing with this too @gnnmi. It's certainly no fun when you wonder whether or not you need immediate medical attention most mornings. I'm glad you've found some way to counter some of it. I have an adjustable bed, which I've raised slightly in the past for other reasons, but never found much benefit towards these particular issues (or anything else really). I went to a functional medicine group, who did a lot of testing that conventional doctors don't normally do. They came back and told me that I don't particularly show for Lyme's, but do have a couple of co-infections that are very common. In fact, they say they rarely see people without any of these in this area of the country (Northeast).

This is amazing and encouraging. It really helps to read about those who have found some way out of this or at least significant improvement. I'm not sure I can personally follow your protocol because I was exercising up until I had to stop last year because I was shaking more and more with the same or less exercise, but it's certainly something I really want to get back to if it's in any way possible.

October was when I had my first full blown POTS flare last year. I couldn't even sit up without being nauseous for a couple of weeks. I've also noticed I've been incredibly nauseous once cooler days have start to hit this year. My eyes are really bad and also on worse days, my standing heart rate is up higher all of a sudden again. I thought a lot of this was due to medication changes (and maybe some of it like a blood pressure increase still is), but have been wondering if this is just the worst time of year for us.

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.

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.

I get arm pains pretty often. Had them last night and right now in fact. Doctors can't figure out what it is, but I had the bright idea of deep breathing when I had this pain once and it felt like my arms were going to blow up. This the doctors understood. I forgot the reason they gave. Still didn't know what caused it, but said of course deep breathing made it worse. Basically feels like a tight band around the arm(s) that is radiated out from somewhere in the chest. Thought it might be an acid reflux side effect for a while because it was worst when lying down and felt like it was going to pop when I get the reflux feeling in my chest. The pain is always in a very specific spot that can be pinpointed. Again, no idea how or why. And now I'm realizing this was probably not very helpful.

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.

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.

Hmm...maybe it's because I have lost so much weight the last few years that it is now visible. I just associated it with the total inability to relax due to this bouncing feeling that's still fairly new.

Interesting. I know it's something I haven't experienced and certainly not felt prior to the last year.

Saw him on Dr Oz this week. The key things that stuck with me are that he's still on 9 medications and said he's still being held together "by duct tape", but it's still far better than being bed bound for 22 hours a day. He talked about the genetic component with his mother and aunt afflicted too. He talked about being able to lay a piece of loose leaf paper on his chest and visually see it flutter. This really resonated with the same thing happens with anything placed on my chest. I've been being watched for adrenal nodules since 2013, which my endocrinologist says are benign and inactive. I must have read or heard about him or this condition previously because I remember asking her about them causing dysautonomia symptoms and she said that's not what's happening. I think I'm going to bring this up with her again. Nobody wants to start messing around with their adrenals unless absolutely necessary and it certainly didn't even solve all of his problems, but you also definitely want doctors to cover all the bases when we're dealing with issues that still aren't always very well understood.

If there's something that helps that, then I need all of it. Been feeling this in some manner or other every day over the past week. Will have to ask my neuro.

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.

I'm not sure, but I know people who use THC with great success as a sleep aid. Of course, your doctor would have a better answer than I would. The way it's been explained to me is that ideally it adapts to whatever the body needs at that point in time. Are you going to be able to experiment with dosages within that system or is that going to be dictated by a one size fits all approach and every bottle is expected to last the every person the same amount of time?

Well that's pretty amazing and awesome. I'm assuming it's all regulated to ensure quality production then? If not, do they allow you to get the product from where ever you want? If it's going to be free too, why not look into whether or not THC would help too? My neuro is a medical cannabis doctor too, so this may be where we go next...if affordable.

I've been using it since January of 2018. It seems to be doing more for me under the hood than anything on the surface that I can directly connect it to. Like, I've rarely ever taken and noticed a certain symptom I was feeling was improved or relieved. Or if it did help in that capacity, it wasn't for an extended period. I think it helps with my blood pressure (as I learned again last night) and can sometimes feel like it temporarily takes an edge off. If I take it the same time as medications though, it seems to amplify the effects (not all of which I want) and can even knock me out (for some it makes them more alert). Two other things are that it's very difficult to figure out the right dosage for you. I still don't even know if I have that down. It's possible a person might need so much to make it in-affordable I guess (it's not cheap). I have a disturbing feeling I may be one of those people whose optimal dose might take it out of my price range. Lastly, a lot of companies just don't make a quality product. It's hard to know what's going into your product. You don't want to spend $60-80 per bottle on junk. There are probably a few reputable people on the internet who can suggest something that's been tested and holds up. I'm lucky enough to know the familiy who produces mine personally. Oh, I take the oil, drops under the tongue by the way. Seems to be the fastest and most efficient delivery route.

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.

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.

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.

I asked about that. He said I could just stop the Trazodone because I was on the lowest dose (50 mg), without issues. I'm starting Buproprion at 75 mg in the morning and he told me to wait a week or so and then increase to twice a day if it's helping and if needed.

Thank you Pistol. That's encouraging. I hope this weekend is all due to the medication switch and will resolve fairly soon.

Ugh. So this originally posted episode was Monday night into Tuesday. Things were pretty stable (or as stable as they get these days) Wed-Fri. Saw the neuro Thursday. We decided to stop my nightly Trazodone (last one Wed night) and start with Buproprion (took first one Sat morn - yesterday). The last two days (Saturday/Sunday) have been horrific, especially in the morning. Severe pain and all of the symptoms from the original post, though I'm at least sleeping most of the night. Normally, this stuff gets better after an hour or two awake, but yesterday I was just really nauseous and felt like there was a heat lamp on me all day. Today, the pain/trembling/sweating thing is pretty ferocious and the heart pounding comes and goes. And I'm supposed to go for a endoscopy Tuesday morning without taking any of my medications somehow. Is Buproprion a medication anyone has any experience with? Wondering if I should ride it out for a few days or call the neuro again tomorrow, although I have no idea what else he'd be able to offer immediately. Both medications appear to be anti-depressants, but I wonder why he'd have me take one at night, but the other in the morning. At least the PVCs haven't been around for over a week now.

It was a little bit out of my price range right now. I have been going to them for a number of other therapies, including something called neurological chiropractic that involves headphones with some kind of tone playing through, glasses with orange lights flashing, manual adjustments that are supposed to help blood and nerve flow, balancing and eye movements. They've also suggested lymph brushing since I'm so immobile now.

Doesn't biofeedback usually involve some kind of machine? An alternative health care center I went to wanted to charge me $1200 per month for use of their apparatus, while also saying they had to brain map me first.