Caterpilly

I tried to reply before and I thought it went through but now I don’t see it… Anyway, basically just said glad it went well, seems like a good appointment and definitely worth a shot to try the LDN!

No worries! It makes sense actually. And yes, those steroid tablets do get bitter quite quickly. I can’t avoid it either. Good to know the hydroxychloroquine isn’t as bad.

Ha, wow, you cut them into quarters, you got skills! I would’ve ended up with a pile of dust lol. My rheum got back to me tonight and called in the prescription to this discount mail order Rx company that shows they have the 100mg. So far it looks like the order went through but I guess we’ll see what they ship me! It’s good to know you didn’t have a bitter taste though if I wind up having to cut them.

@Sarah Tee glad the antacid tip was helpful! And I know what you mean about the heat. My symptoms get even more horrific in any warm setting. Hope your upcoming test goes as well as possible! as for the 100mg… I heard back from the rheumatologist and even though the pharmacist told me not to do it, the doctor said he has his patients do it, and he thinks the worst part is just the bitter taste and of course you can split the dosage unevenly because it’s not scored. he said 100 mg tablets don’t exist but I saw them online and I even called a local CVS to double check and they said they can get them. It looks like it was something new that came out in recent years but I’m waiting to hear back if he can actually get them or not. He suggested me going down to 100 mg once a week and then slowly working up from there to try and build a tolerance. but now I’m dealing with some other medical issues and have to start some other medication so plaquenil will be on hold once again. Ah well. My Gammacore trial just expired, and I was wondering if it was just starting to do a tiny something… Even though I still feel like trash I had to push through a lot this and last week and don’t even think I would’ve been able to push through that with how I’ve been doing in recent months, so I’m not sure if a small change was starting to happen. I’d need more time to experiment. So now I just have to decide what device to try next since gamma core is so expensive. I did get an Amofit so I’ll probably try that next. I don’t know if it’s just a fake placebo device lol but so many patients online have gotten benefits from it apparently that I just got it. Truvaga supposedly delivers the same exact stimulation as gamma core. They’re made by the same company and I just heard Truvaga is supposed to come out with a new version that you don’t have to keep refilling, that you can have unlimited uses, which is what I would need because I want to experiment with it for a long time. I think if vagus nervous stimulation is going to work in me It might take my body a very long time to show any benefits. So I want some thing I could play around with for a while. thanks again for your input and hope all your upcoming stuff goes well!

@Sarah Tee sorry to hear about all the extra stuff you have going onto and that making it even harder to know the medication is doing. I can relate! Part of the problem I’ve been having is things have been so bad this past year that my baseline is just spiraling and I just keep getting worse and worse and so now as I try treatments I can’t tell what is me or what is from the medication possibly.it’s just a mixed up mess! But that’s great if you think you figured it out at least. That’s something! I saw that hydroxy. is supposed to be taken 4 hours away from any antacid. I’m sure you already know that, but just in case because my doctors and pharmacy often don’t tell me anything, and I usually just find out myself on drugs.com. Including negative interactions, which is really frustrating. It’s true you have to figure out everything yourself and it’s hard because we’re already so wiped out! anyway, I’m on famotidine, and I still don’t officially know if that counts as an antacid or not. I got mixed answers. I know it’s technically an H2 blocker, but I don’t know if you have to take that four hours away, so I’m just gonna try to do it just in case. I think it just might reduce the effectiveness of the hydroxy if taken too close together. well, thanks again for your response, and best of luck to you as you continue on!

@Sarah Tee OK thank you for the suggestions and update. Sorry I didn’t see the other post above before where it said you were taking a break. For some reason when I saw the thread, the last post was from like January? So apologies if you were trying not to respond, but I appreciate it! The pharmacy told me I cannot cut the 100 mg pill because of how it’s designed with the coating or something? But it looks like 100 mg pills at least exist here I just might have to not get them through my insurance for now. And that’s true maybe splitting the dose 100 mg twice a day might be better than 200 mg one time a day. If my body can adjust to even that extreme dizzy, etc. stuff then yeah it would be worth a try. Main problem is I live alone and can only access super limited help , so it’s not safe or practical for me to be getting even worse from side effects since I’m barely hanging on as it is. But I know I really don’t have much of a choice so it just depends how bad side effects get and for how long. It got to a more scary point after just 2 pills and I knew I couldn’t take it increasing any farther than that so that’s why I stopped, but perhaps starting lower and slower might circumvent that.

@Sarah Tee how has the rest of your trial been going so so far, have you reached the three month point yet? have you still found most of your side effects subsided in the first two weeks or so? Or have more appeared? I only started my 200 mg pill this past Friday and Saturday night, but unfortunately, about four or five hours later, started to experience more dizziness and lightheadedness. It was worse after the second night and continued to grow worse the next day, and I woke up more faint and then had weird stomach upset and increased faintness and dizziness…Even later the next night , about 24 hours after my last dose. I only took two pills and stopped, but the side effects seemed to continue to worsen the next day. I know it has a long half-life so I don’t know if only taking two pills if you can still feel pretty sick/flared from that in the following days or weeks after? i’m waiting to hear back from the rheumatologist. I was thinking of asking for 100 mg pill and to take it every other day to start. It doesn’t seem they go down to 50 mg here. but if it messes me up this much and lasts a long time in your system even after just two pills I’m not sure if I’m gonna make it through the trial. And if working up from a lower dose would even help at all or if I’d run into the same issue once I hit 200 again. It really stinks I’m so medication intolerant! I had really high hopes for this one. 😞 I wish there was a way around the medication intolerance but every doctor I asked said there’s nothing I can do. I even took that genetic test for medication and it was not helpful at all. Oh well.

I didn’t see which product that referred to is that the Pulsetto? i heard from a Facebook group for vagus nerve stimulation that the Pulsetto’s lowest starting intensity is a little higher than other devices. So some people have more trouble tolerating it and also because it does both sides of the neck at the same time, but it just depends on the person. It’s all so variable. In this patient run group, they advise to start on the lowest setting and go very low and slow since most people in that group have sensitivities due toCFS, POTS, etc , but of course this is all just patients sharing experiences and doesn’t necessarily apply to everyone. Anyway, they recommend starting with 1ma when possible. Gammacore/Truvaga starts at 1.5ma and goes up by 1.5 increments. Whereas pulsetto, for example, supposedly starts at 4ma. My 3 mo Gammacore trial is almost over… Only 2 1/2 weeks left but it got all messed up. My symptoms started spiraling out of control after I started, and then it became hard to know what was just my body getting worse on its own and what was from the gamma. Only thing I think I consistently noticed is when I have more of a migraine it does make the headache worse… And in that case, I have to use a very low intensity setting to not flare it. I’m still not sure what settings I can tolerate and what settings I may have success with so I would have to try it again. I couldn’t determine anything conclusively yet either way. And I don’t think I was able to work up to doing it consistently enough for a long enough amount of time to be able to tell. I may eventually still try Pulsetto just to compare different devices. And if it’s a one time payment, that’s much cheaper than Gammacore. Or I may switch to Truvaga since it delivers the same stimulation as Gammacore, but could potentially work out to be less expensive if you don’t need more than like 2 to 6 sessions a day. But I’m not sure what I need or don’t need yet. I am supposed to start plaquenil soon and then that will be another variable thrown into the mix so I’m not sure when I’ll restart my nerve stimulation trials. Don’t want it to go to waste again. We’ll see!

@Sarah Tee 😂 that’s funny. OK, guess that’s the closest machine we got!

@Jyoti thanks! and yes, if it helps with anything, I will let y’all know!

I just wound up getting Gammacore. It also works by holding it to your neck. It is super expensive but I’m so desperate. I wanted to try it. The same company makes Truvaga it delivers the same type of stimulation, but Truvaga is a little cheaper because it’s just a flat number of sessions given per device. So if you don’t need to do that many sessions, you might be able to get away with that. Some of the emerging research on vagus nerve stimulations in regards to autonomic dysfunction, and other symptoms caused by the vagus nerve does sound promising. We still don’t know what type is best, what type of device…( There are ones that go on the ear as well) …Which strength… How often a day and how long you need to do it for etc. so it’s all still experimental right now but I’m desperate so wanted to give it a try. I’m very sensitive to things so right now I’m just working on increasing my tolerance to it. It took a while for me to figure out the right placement. a few weeks before I finally discovered the right spot. So now I just have to work up and see how I do with it. As far as for migraines, they say to give it 2 to 3 months before you can tell it’s working… As for other autonomic dysfunction symptoms… Who knows. But I like having something that I can try, at least… It’s possible it might be aggravating some of my pain and sensitivity, but they say sometimes that can go away with use. It’s hard to tell since I have daily symptoms. I only just started so I need more time to tell what it is or is not doing, but I think I might be starting to tolerate it a little little better than the beginning? But maybe it’s because I had it in the totally wrong place in the beginning.

@Sea otter yes! I often say I wish I had a magical machine that could make doctors feel exactly what it’s like in our bodies… And anyone else who is dismissive for that matter. I don’t think theyd do so well being us for a few weeks, let alone years or decades!

@Sarah Tee yea I was really surprised my Dr was so dismissive of Dr. Novak's findings/conditions. I don't know why my Dr doesn't think cerebral blood flow is what's causing issues in some people. It makes so much sense to me, and if Dr. Novak has the ultrasound etc readings to show it, it's like, how can that be denied?! Super weird. But... encouraging to hear about the other researchers identifying a similar thing. I hope it becomes common knowledge soon. It's bad enough when Drs dismiss patients, but then if some smart Drs finally start figuring things out that lead to new conditions and info, and other Drs just dismiss their findings, even when they seem valid, ugh... not good! You see it happening sadly with Long Covid too... some believe and research is already showing things.. and some are out there just dismissing it. Or even with POTS, there's someone at I think NYU's Dysautonomia Clinic or something that doesn't believe in POTS and apparently not too long ago was trying to claim POTS is psychological and based on a fear of standing! Are you kidding me?! That was crazy to see with all the documented POTS research/findings out there, and that was coming out of a supposed top university hospital. Scary and sad. Here's to hoping the Drs/researchers who really get this stuff will prevail!

Oh my “fashion diagnosis”?! They really don’t get how debilitated we are by this stuff. And of course “ psychological” when they don’t fully understand something, gosh yeah …it’s so sad to me that this belief is still out there. It took me 15 years to even get a diagnosis and I’m almost 30 years in now and declining and deteriorating and have had so much lost life… And I feel like these attitudes are what contribute to that. it’s so sad doctors cannot take it seriously or understand that there are some things that we have not quite figured out yet medically and it doesn’t mean that it’s psychological or patients are just making it up !

Thank you for all the info I really appreciate it! Ha and no worries about Dr B memories😂 it was just such a letdown cause I feel like she probably is knowledgeable and I just really wanted to pick her brain and for $500 I feel like she should’ve let me do that. Lol but oh well. I fully support and wish you develop those magical powers to help bring quality doctors to us all. 😂 which test was able to show the restricting blood flow to your head? Was that the cerebral ultrasound or is there an additional test that shows that? Funny, I had a telemed with my autonomic neurologist today and I brought up the Dr. Novak low cerebral blood flow conditions, and he said he didn’t believe in that! I was shocked. Like Boston is a reputable hospital, and their program seems even better for autonomic stuff, my doctor doesn’t even have a full autonomic lab, even though he’s technically at a research hospital too. They don’t have QSART, and don’t do autonomic neuropathy biopsies, just sensory small fiber neuropathy anyway, he said something like oh he’s (Dr Novak) been saying that for years but it’s not proven or Mayo hasn’t been able to replicate it or something like that, but I did not think that was the case at all. I don’t think he could make it up and diagnose people with these conditions. And it definitely seems that low cerebral blood flow is definitely causing symptoms and it’s the whole premise behind that new ear device which it seems various doctors and researches are into and supporting so I think my doctor is behind on this one. I think he tends to hold out and be dismissive until things are like very well-known and more widely approved or something. I hope more research comes out to prove this because it’s devastating if even another autonomic, neurologist is not accepting that diagnosis, yikes! He said something like he doesn’t think it’s what’s causing the issues in pots patients. But Dr. Novak has mentioned he doesn’t think these patients qualify diagnostically as pots but something else. These new conditions. So I don’t know… semantics? Or ha, I wonder if they were like rivals in school or some thing and he just doesn’t agree with this other guys research lol or status. My hope was if the ear device showed some thing in me I would be able to show it to doctors and have them take it seriously but now I feel like he will just dismiss the whole thing. I hope more research comes out soon to just help patients stop being dismissed about everything. I never heard about the IV albumin, but I will have to look at your thread and research it more. I don’t know if it’ll probably be just as hard to access as IVIG or not. Seems anything more fringe or experimental my doctors will definitely not do out here. They’re always has to be like solid diagnosis and solid proof. I never seem to be around any of the doctors who are willing to try things experimentally Anyway… funny enough the neuro today did support trialing plaquenil. That’s like one of the only rheumatological drugs he was ok with. He was behind me trying. He’s of course against Biologics and IVIG. I get it the side effects are really bad but it’s like when you’re deteriorating what else can you do? I also heard a patient on a Facebook group said her immunologist likes it for MCAS which I was surprised to hear, but thought that could be interesting and maybe helpful. I don’t know if I have that, but I do have a lot of heat feeling/ flushing, but I never really responded to Pepcid or allergy meds. Anyway… I hope the plaquenil trials go well for us both! Here’s to hoping!

@RecipeForDisaster OK thank you. I appreciate all the info. That’s good you can at least hold the IV for 3 to 4 days. Mine is usually 3 to 4 hours max if it’s a “good vein “ and yeah, I know what you mean about even once you finally get a diagnosis, a lot of people and doctors still won’t even know about it or understand how badly it affects you. And there’s still so much to know…still not a whole lot of treatments that really work well, maybe only for some people. I mean even from when I initially became symptomatic almost 30 years ago, there isn’t really too much happening since then. Hopefully now post Covid since a lot of people are getting post viral conditions like this maybe it’ll help speed along research.

Oh didn’t even think to try grubb as a possibility but that would be amazing if that ever happens. Maybe I will give that a try. I recently tried Chemali at Cleveland clinic. His staff said I could email him all my info and give my desperate plea why I can’t travel to him and all that stuff but he didn’t care. He was just like he has to see me in person, which he totally does not. And at a minimum he could’ve at least said if I already had all the testing he does or not. It’s the main thing I wanna know, like if I missed anything. After almost 30 years, I’ve had and tried a lot. oh OK yes autoimmune SFN diagnosis would get you IVIG. With regular SFN There’s nothing they’ll do for me besides from offer medication like gabapentin that I can’t tolerate. And yea Dr Novak sounds like he’s doing great things. It really does suck now even in the age of TeleMed that everyone still can’t access all these good specialists and it’s just luck of the draw based on where you live or if you have the ability to travel and people to care for you, which I do not. CHOP in Philadelphia did a TeleMed at least with me, because I’m still trying to figure out what the mitochondrial dysfunction is from but no diagnosis there yet either. But TeleMed was all I needed. They would not have been able to help me in person so I’m glad they at least did that. I wish more places would, 90% of the time TeleMed is all I need. Glad Dr Novak was able to get you that diagnosis because I know how infuriating and devastating it feels when you know something is wrong and regular testing is not showing it and no one believes you. It’s like one of the worst parts of all this. You at least want to know what’s taking away your functioning. anyway, thank you for the kind words and information, I appreciate it. Oh, and what’s sequential compression? Are those like the blood pressure type cuffs that you put on your legs that squeeze? I do have those… Oh, and what’s sequential compression? Are those like the blood pressure type cuffs that you put on your legs that squeeze? I do have those… And what type of vagus stimulation do you use? I recently got a gamma core… but my nerves are so sensitive. It seems like it might be increasing some of this weird sensitivity I get in my face/head and neck and some Head/neck/shoulder pain, but I’m not 100% sure so will have to experiment more and see if I consistently get these issues. sometimes they said they will go away the more you use the device… Which, if that’s the case, I would want to keep trying. I just don’t want to give myself more, long-term chronic pain or sensitivity issues so not sure how much I should push it yet but we’ll see… Have you noticed improvements with it? And after how long of using it? Just out of curiosity how long are your sessions are each day?

Hmm.. yeah that’s interesting and might be true. These places like to push it fast in like an hour or maybe an hour and a half and I was getting just 1 L. My veins suck though, so between that and finances, my experiment had to end anyway. I think they got ruined after chemo many years back and now just keep getting weaker as I get older, so I was running out of viable veins and a picc and port would not be a good idea for me, midline would be lesser of evils but still not good. During chemo they broke the picc line guide wire in my arm and the metal got lost and then they found it a crumpled up ball inside. It sliced through my vein, attached to my nerve, and I had to get surgery to remove it later on. now I have permanent sutures in there, it was a whole mess. And it hurt the whole time. I had it . so unless I really needed this and it worked, ha I’m not jumping for any lines. Plus, it’s just too expensive since my insurance won’t cover it. So I was hoping to just trial it to see if it could get me back to the baseline that I lost the last year or two. Or if it’s something I could use to get me out of crashes… But not sure. And Me being so sick and homebound now the midline would be a lot to deal with and I don’t have anyone to help take care of me. But… all that said, if I had to revisit it later, and I was giving myself the infusions at home through a midline… Then I guess I could adjust the rate and amount myself.

@RecipeForDisaster OK, thanks, good to know how you can still be symptomatic lying down as well. Some doctors make you feel like you should feel miraculous and that’s not the case and I hope Dr. Novak figures you out as well! and OK he was not the one who did the IVIG, that is so hard to get. I don’t know anyone by me that would do it experimentally. But that’s good He was at least trying other things with you. I still have found nothing after 29 years it’s just beyond devastating. if I could at least tolerate medicines better maybe I would’ve hit on some thing, but not tolerating a lot of meds makes it more challenging too . There’s not too many options for us as it is but my body like rejects everything. And then the things it does tolerate just don’t work. 🤷‍♀️

Oh, interesting about the time of day patterns and possible auto immune relation. Also, yeah, I probably have CFS too… That’s always what they said as a kid but I figured they said that because I just didn’t test positive for anything else, but I hate accepting that diagnosis because it’s such a dead end sadly. It’s a shame how research hasn’t really moved or treatments in decades and there’s still so much dismissiveness. But I get horrible posted exertional malaise from the littlest things and never recover so it’s probably a big part of it. and exercise, even going low and slow, anything done consistently always makes me worse and I lose functioning, long-term or cause permanent chronic pain areas so it’s really messed up. and yes, funny you mentioned about the IV Saline, because as part of my year of expensive last ditch efforts, because everything feels pretty close to over at this point after almost 3 decades… The only way I could access them was by paying for those expensive mobile IV places. I tried about seven IVs I think in total, saline plus various vitamins and supplements, I also have mitochondrial dysfunction, so I didn’t know if it would help from that perspective, either… And gastroparesis… but I really couldn’t tell if it was doing much. Sometimes a few days after the IV I might’ve been slightly less faint and a little more “pushable” but it didn’t really seem consistent so I don’t think it really did much sadly. Other people say it works wonders though, so you never know.

Thanks, I did take the hit and the $500 from my savings for a TeleMed with Dr Bltshteyn since I was so desperate. But I was really disappointed. She said not to worry, and that I could ask all my questions, but all she did was take time taking my history, which I specifically told her I did not want to waste all the time doing. Like, of course, I still understand explaining things, but I gave her all my records and a summarized history ahead of time and would’ve went through it quickly, but it was completely useless. She just took my history, regurgitated it back, not even that accurately in a report and gave basic treatments that I already tried or knew about and didn’t answer the specific questions I was looking to her expertise for. I was so upset.

@RecipeForDisaster oh ok, thank you. Bummer! But good to know. Has he been able to identify your underlying cause? I’m curious what battery of tests he orders and if I already had everything done anyway. Well, except for the Doppler thing, I don’t know if they do that anywhere else around here, haven’t had that. it stinks because he sounds like the type of researcher I would need to be around to maybe still have any hope for my case after almost 30 years…especially If he sometimes can experiment with different things like IVIG , etc. Even being nearer to NYC, no one good with this stuff is out there I wish someone would just take interest and research me because I feel like there’s a lot to learn there lol I’m like my own longitudinal study 😂.

@MaineDoug ha, I didn’t realize you could “@“ people on here in order to reply lol so hope I’m doing this right. thanks for the info. Sorry your RA seems to be causing you dysautonomia now. Autoimmune issues definitely are one of the underlying causes. As much as those conditions and treatments can suck and be dangerous, you are right that by at least being by diagnosed, and Seropositive, you’ll be taken seriously, and hopefully can have more access to treatments that could maybe eventually help the dysautonomia too. my dad has two sero negative autoimmune conditions, but his symptoms were weird enough where they were able to diagnose him, but he still was undiagnosed for a long time. I have all kinds of weird symptoms, including a nasal sore for one year! But still seronegative so pretty stuck and held back from accessing treatments. So yea, ha while not the “gift” you wanted 😆, if you have it, it’s better to know, and it can have its advantages

Yeah, it stinks that they’re not able to ship the stat device everywhere yet. But hopefully that will eventually happen once it’s perfected. Oh, that’s interesting your form of low cerebral blood flow is caused by vasoconstriction. I didn’t realize that it wasn’t just low blood volume or blood pooling. What are your most prominent symptoms? Do you still feel faint and lightheaded all the time? Do you get a lot of headaches? Also, do you ever feel faint or light head lying down and after waking from sleep? This symptom puzzles me the most because one is supposed to feel better lying down, but I’ve been feeling so faint, weak, even lying, especially when I wake up. I always wake up feeling drugged like I’ve had anesthesia, very lightheaded and dizzy, but now the added faintness and shakiness is. bizarre. this is why I’m curious if the stat device will tell me if I have low blood flow even when I’m lying or sitting. For me, I still think I get orthostatic symptoms even sitting, I feel so drained. i hope Dr Novaks research can start to make some headway for us all. I didn’t even know about those two new conditions he discovered until recently. My autonomic doctor in NYC never mentions anything. I’m in New Jersey but I’m homebound and disabled so I can’t travel far and having trouble just leaving the house even once every few months this year. It’s gotten so bad. I’ve been sick for 29 years now, only getting worse, intolerant of most meds or the ones I tolerate don’t work. So I literally have no treatments to take. So it’s just so challenging and scary cause it feels like I’ve run out of time. And being next to NYC you think there would be studies available or good researchers like Dr. Novak but there’s not. I’ve had so many doctors say try IVIG at this point, but no one actually can do it. I have Medicare and you need very specific diagnoses to get it here. None of the doctors who actually can prescribe it will do it since my case is still just a mystery. POTS, small fiber neuropathy, gastroparesis, mitochondrial dysfunction, etc isn’t enough. I wish I could see Dr Novak but Id never handle or recover from the trip at this point 😞 did you have to see him here in America to get diagnosed? Was he able to TeleMed with you or were you able to get your diagnosis locally? How do they see the vasoconstriction part? Or low blood flow? Just curious if it’s only a special test done at research institutions or if it’s something you can get locally.

Oh wow, you found relief on 25 mg. Interesting. That’s good you didn’t need a higher dose. as for your condition, did the researcher say why he thinks it’s probably auto immune? I’m just curious if there were certain anybody markers or if it’s just a hunch based on lack of responsiveness to other treatments. I have not yet had any antibodies come up positive for like all the tons of things tested, but other signs that seem autoimmune. My IgG and ACHR antibodies were ok too. I really had high hopes for Mestinon because at the time it was the only drug it tolerated, and I stayed on it for a year and worked up to the highest dose, but it did nothing to help me. In later years when I tried to retrial it, I seemed to be more sensitive to the Gastro effects, but I don’t think it really was going to help me. I can’t remember if I read this earlier in the thread, or if I’m confusing you with someone else, is your condition the one that’s related to low cerebral blood flow? I wonder if that is part of my issues… I am getting that new STAT ear device to see if that make sense of anything, but that probably won’t arrive till April or later