Caterpilly Posted January 15 Report Share Posted January 15 7 hours ago, RecipeForDisaster said: I heard that Dr Blair Grubb may be doing televisits again. I’d try for that for sure. My neuromuscular specialist at home orders my IVIG, because it’s technically for autoimmune SFN, which he diagnosed. I do like that I don’t have to reach him in Boston. It would be so great if everyone could see Dr Novak easily - he really is a pioneer. Even getting a weird diagnosis of HYCH was something other than repeatedly being told I don’t have POTS: I knew! Don’t give up - there are so many options out there! I have a whole room of devices like sequential compression, transdermal vagal stimulation, lots of compression gear… plus a giant box of meds, some for every day, and some to bail me out at bad times. 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? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 15 Report Share Posted January 15 2 hours ago, Caterpilly said: 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. I can’t have a PICC or port, either. I get a new IV every time, although I can usually keep it for 3-4 days. It stinks, but I’m glad I can do it myself at home. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 15 Report Share Posted January 15 2 hours ago, Caterpilly said: 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? Having diagnoses is very nice, although I am still missing a lot of explanations for what is wrong with me. And, HYCH isn't even known by most doctors, and the diagnoses I have would not be considered a big deal by most people. Yet I’m in really bad shape overall. I completely agree that for the most part, there is not really a lot to see, and we could be seen via telemedicine for most visits. It stinks to spend half a day traveling to Boston (with help) for no good reason Yes, they are the inflation cuffs that go all the way up your legs. They improve my circulation and BP. I have put together ear clips and a TENS device for my tVNS. I haven’t been using it, but I should. It was an hour per night. I stopped because I was not sure I was getting much benefit, but it definitely wasn’t hurting anything. Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted January 16 Report Share Posted January 16 @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. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 16 Author Report Share Posted January 16 @Caterpilly, I’m so sorry to hear that Dr Blitshteyn wasn’t any help. What a disappointment. I apologise for bringing back an unpleasant memory for you. I wish I could wave a magic wand and introduce quality control over doctors. And also clone a few of the good ones. *** I didn’t get any benefit from IV fluids, which was a big puzzle at the time, but makes sense now that I know that my problem is my body restricting blood flow to my head rather than low blood volume. Some people with refractory POTS have had success with IV albumin. It ”sticks” better than saline and has a mild immunomodulatory effect. I have a long thread about it on here, with links. Just search “IV albumin”. It has to be ordered by a specialist, and has risks beyond those of saline because it is a blood product. It is reasonabley well established as a treatment in Canada, but not really anywhere else. I think it happened simply because one specialist there decided to try it and a few of his colleagues followed suit after seeing it was effective. I’d guess there are about 15 to 20 patients receiving it, many of them teenagers or in their early 20s. Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted January 17 Report Share Posted January 17 4 hours ago, Sarah Tee said: @Caterpilly, I’m so sorry to hear that Dr Blitshteyn wasn’t any help. What a disappointment. I apologise for bringing back an unpleasant memory for you. I wish I could wave a magic wand and introduce quality control over doctors. And also clone a few of the good ones. *** I didn’t get any benefit from IV fluids, which was a big puzzle at the time, but makes sense now that I know that my problem is my body restricting blood flow to my head rather than low blood volume. Some people with refractory POTS have had success with IV albumin. It ”sticks” better than saline and has a mild immunomodulatory effect. I have a long thread about it on here, with links. Just search “IV albumin”. It has to be ordered by a specialist, and has risks beyond those of saline because it is a blood product. It is reasonabley well established as a treatment in Canada, but not really anywhere else. I think it happened simply because one specialist there decided to try it and a few of his colleagues followed suit after seeing it was effective. I’d guess there are about 15 to 20 patients receiving it, many of them teenagers or in their early 20s. 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! Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 17 Report Share Posted January 17 9 hours ago, Caterpilly said: 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 @Caterpilly I have heard that sooo many times! I even had an EP once tell me ( after he did my second TTT ) he thinks POTS is a fashion diagnosis and because it is so new and the symptoms so vague everyone wants to have it now. Another Doc told me he does not believe in IV fluids for POTS because POTS is a psychological condition. I think that some doctors simply dont want to admit that with dysautonomia they have to rethink everything they learned in med school! Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 17 Report Share Posted January 17 14 hours ago, Sarah Tee said: I didn’t get any benefit from IV fluids, which was a big puzzle at the time, but makes sense now that I know that my problem is my body restricting blood flow to my head rather than low blood volume. @Sarah Tee Reduced cerebral circulation can be caused by several reasons: it can be that the blood flow to the brain slows due to vaso-constriction, too low BP from vaso-dilation or low blood volume. IV fluids usually help in all of these scenarios, albeit sometimes only temporarily. For me HPOTS causes the blood vessels to constrict and more pressure is needed to pump the blood to the brain. IV fluids help in that by creating an even pressure within the vessels and this reduces the ANS to produce Norepinephrine to constrict. For example: if I go into a crisis with high HR, high BP and tremors it is caused from adrenaline. IV fluids counteract by creating an even pressure which in turn reduces the sympathetic over-compensation and things calm down. If the blood vessels are too dilated ( often in EDS ) then the ANS tries to counteract by increasing HR to pump more blood to the vital organs, and may dump adrenaline to constrict the vessels. IV fluids will help by creating an increase in the pressure within the vessels. And if there is low blood volume of course the ANS will need to increase constriction of the vessels and increase HR and pressure to pump enough to the organs. IV fluids here can help simply by increasing the volume within the vessels. Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted January 18 Report Share Posted January 18 14 hours ago, Pistol said: @Caterpilly I have heard that sooo many times! I even had an EP once tell me ( after he did my second TTT ) he thinks POTS is a fashion diagnosis and because it is so new and the symptoms so vague everyone wants to have it now. Another Doc told me he does not believe in IV fluids for POTS because POTS is a psychological condition. I think that some doctors simply dont want to admit that with dysautonomia they have to rethink everything they learned in med school! 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 ! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 18 Author Report Share Posted January 18 @Pistol, in my case, the cerebral arteries are constricting and stopping the blood getting to my head due to something in the immune system interfering with the normal vasoconstriction/vasodilation process. At least, that’s what Dr Novak has hypothesised. And that’s why vasodilators make me feel better. It’s also why I feel better on steroids and have a partial remission afterwards – the steroids damp down my immune sysytem so it is no longer interfering with the normal blood flow to the brain. Funnily enough, lying upside down improves the blood flow temporarily, maybe just by forcing more blood through. So maybe giving me a lot of IV fluids would end up forcing blood through just because I was hypervolemic (but of course no-one would do that because it is dangerous). It would be interesting for me to have a tilt table test and get tilted the other way, head down, for a minute or two, while having the Doppler ultrasound. I understand that other people have problems with cerebral blood flow for all sorts of reasons. Bodies are complicated. I apologise for giving the impression I was describing what happens in everyone with low cerebral blood flow. My explanation is only applicable to hypertensive-type OCHOS, as described by Dr Novak and borne out by my personal experience with medications, infusions, etc. The fact that IV saline didn’t help me was just one clue gathered over two years leading up to me being diagnosed with OCHOS, and not responding to IV saline doesn’t mean you have OCHOS, because some people with OCHOS have low blood pressure and signs of hypovolemia, so they could well respond to IV saline. Other folks will of course have to go on their own odyssey to figure out what is happening (or have already been on it and can offer suggestions from their experience). Sorry for the confusion. Quote Link to comment Share on other sites More sharing options...
mehaller Posted January 20 Report Share Posted January 20 The steroid shots didn't help the radiculopathy - on to finding a surgeon. I will say, during the 36 hours after the injection, by lightheadedness was noticeably mitigated. This is significant, because I had suspended taking midodrine during and after that period as I expected to spend a lot of time supine. One of the possible side effects is insomnia, and I was awake non-stop for 48 hours. Aside from the pain, I felt pretty darn good in the dysauto department. Back to normal - pain and dysauto. The mission continues. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 21 Author Report Share Posted January 21 @Caterpilly, hmm, I haven’t heard anything that suggests Dr Novak’s ideas on cerebral hypoperfusion are in any doubt. His research in this area dates back some years, and there have been other big names working before him on the same theme that are referenced in his articles. Funnily enough, a group of South Korean researchers published a study that identifies the same disorder as OCHOS, except calls it OINH. Their study and Dr Novak’s OCHOS one both came out in 2016. I don’t know whose came out first, or if they knew about each other. So in a way they replicated each other’s findings of the condition (although not the studies because the methods weren’t identical). Anyway, I dare say they’ll all “duke it out” in the journal pages if there is anything different to say 🙂 Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted January 21 Report Share Posted January 21 @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! Quote Link to comment Share on other sites More sharing options...
Sea otter Posted January 22 Report Share Posted January 22 15 hours ago, Caterpilly said: @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! Sometimes I wish doctors that make claims how POTS is psychological could experience our symptoms for a while and see how it goes. Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted January 23 Report Share Posted January 23 @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! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 7 Author Report Share Posted February 7 @Sea otter, @Caterpilly Funnily enough, there is a machine that can induce blood pooling in the lower body (and hence low blood supply to the brain). I can’t remember what it it is called – negative pressure something? It looks like a smaller version of an iron lung. The research subject is sealed into a cylinder with the seal at about waist level, then a pump lowers the pressure inside the cylinder, and the lower pressure sort of “sucks” the legs outwards in every direction, making lots of blood flow down to the lower body. I imagine NASA or one of the air forces of the world invented it to investigate G force stresses on pilots. I saw it described in a lecture by Dr Grubb, I think. One of the dysautonomia experts, anyway. He described it as interesting to experience and very unpleasant! Edited to add: It’s called a lower body negative pressure chamber. Here’s a photo of an experimental subject in one: Just found out this technology can also be used for healing purposes by boosting circulation to the legs. Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted February 7 Report Share Posted February 7 @Sarah Tee 😂 that’s funny. OK, guess that’s the closest machine we got! Quote Link to comment Share on other sites More sharing options...
arockstotum Posted February 8 Report Share Posted February 8 hi Sarah, how is your hCQ trial going? I'm also considering trying it myself for hyperadrenergic POTS. Quote Link to comment Share on other sites More sharing options...
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