Mestinon: A glimmer of hope in POTS
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- Опубліковано 23 тра 2019
- Introduction:
Medical care for patients who have a diagnosis of POTS remains hugely unsatisfactory. POTS or rather dysautonomia is a very heterogenous condition. No two people are exactly the same. There is no one single aetiology that can even sometimes be identified. Often the patient who is really suffering looks alright from the outside. Many doctors, largely out of ignorance or perhaps arrogance, don’t even believe in the condition. Many don’t know enough about it to start treatment. Research into this hugely debilitating condition is only being driven by a handful of institutions with limited funding and a limited number of patients to recruit. Given the lack of big robust evidence, doctors tend to be unwilling to try out new medications which may through small studies have been shown to possibly benefit some patients. Because doctors are reluctant to try out new meds, we don’t develop any experience and the treatment of the patient remains stagnant. It therefore become imperative for patients with POTS to become as informed as possible and become their own advocates.
In view of this today I wanted to talk about a medication which has been shown through small research studies to help some patients with POTS but one which is not being prescribed much because many people don’t know about it.
This medication is called Pyridostigmine. It is also known as Mestinon.
Pyridostigmine: The science:
In POTS/dysautonomia, there is an imbalance between our flight and fright response which is largely mediated by adrenaline and noradrenaline and the contrasting rest and digest system which is medicated by a neurotransmitter called Acetylcholine. Much of the medications we use are designed to blunt or damp down the flight or fright response. However it is possible that if we exaggerate the rest and digest response we could achieve the same result in a different way and in so doing it offers us another therapeutic target. Acetylcholine which increases the rest and digest responses is broken down by an enzyme called acetylcholynesterase. If we had something which could stop the breakdown of acetylcholine by stopping the acetylcholinesterase enzyme from functioning, we could increase the rest and digest responses. This is where pyridostigmine comes in. Pyridostigmine is an acetylcholinesterase inhibitor and therefore should increase our rest and digest responses.
Thank you for your information and research!🙂👍🏼
Dr. Gupta is awesome. 👍
You provide a great service but we cannot hear you. We need more volume please.
Hi Dr Sanjay. This is a good video. My son suffers from this condition. It is so debilitating and as you say know one believes this condition.I find he s constantly tiredHis heart rate at times fluctuates.He was at one time given a heart monitor and it was removed.It is a most harrowing condition.You have given good information..I am so grateful to you . Thank you so very much.
patricia bennett I hope your son feels better🙂
SNK I am deeply touched by your kindness. I visited him yesterday and he is so positive but was so very tired and I always think he tries so hard and does not want to talk about it. So I am pleased Dr Sanjay is so helpful.He has three children and is unable to play football with his son.When his Dad passed I feel this triggered worse. However I really value your words as it makes me feel better. I want it know more and this wonderful doctor who is kind to spare time to explain . He is a consultant and is impressive and I appreciate him.I wish you kindest regards and hope you and your family are well . Thank you.
I'm taking Mestinon for post viral syndrome. It has definitely improved my HRV (I monitor that with an Oura ring.) My POTS symptoms went away with ultra-high doses of injected methylcobalamin (a type of vitamin B12.) My autonomic neurologist said POTS can be caused by a B12 deficiency, but that it isn't common. I wonder, since patients are rarely given ultra-high doses like I got, if they ever really get to find out how common this situation may be. Note - i took Mestinon before i took the B12 and Mestinon didn't do all that much for my POTS....at least, not nearly as much as the ultra-high doses of injected methylcobalamin did.
Thanks
Wow! I have LEMS - Lambert Eaton Myasthenic Syndrome. Mestinon is commonly used to help LEMS (a rarer form of myasthenia), but the main drug is Amifampridine. (3,4 Diaminopyridine base form - or Firdapse (phosphate salt form). Mestinon works best for LEMS when taken with the DAP/FIRDAPSE.
A lot of people who have LEMS experience chronic autonomic dysfunction due to inhibited acetylcholine release (voltage gated calcium channel antibodies or VGCC’s are the presynaptic cause in LEMS). Chronic eye and mouth dryness, reduced or absent reflexes, esophageal dysfunction, bladder dysfunction and reduced bowel peristalsis are all symptoms of LEMS. Quite a few people also have POTS. I will ask my LEMS support group if anyone notices Mestinon helps their POTS.
Thankyu sir
Volume up, doc......
Audio is not easily audible!
I have POTS as well as asthma and can not tolerate beta blockers due to their effect on my breathing. Are there any medicines for POTS that are safe for someone with asthma? Thanks!
Great question, I'd like to know too.
What about the Ivabradine?
Our daughters doctor put her on...wait for it....it's crazy.....Concerta! It leveled her heart rate, gave her energy and kept her task oriented. From not being able to get out of bed, to working full time.
Plus blindness for a minute or two and vastly decreased hearing. I developed this while pregnant 46 years ago.
Yes, Jnia ChildoftheKing, you lose your sight and decreased hearing briefly before/as you are losing consciousness. Wild to talk with someone who has the same thing. Do you do anything for your heart health?
@@Romans15.32No. I've just learned to live with it though living might not be the right word. I'm going to ask my Doctor next week about trying Mestinon. Walking isn't much of an issue for me. It is standing in one spot that makes my legs throb and I feel faint. It's debilitating. How is it for you?
@@hannahrosa5485 are we talking of the bundle branch blockage? I have none of this. In my 59 years I have had 2 loss of consciousness/brief and a small handful of times which a slight amount of dizzyness, no leg problems or any other health issues. I did jot even know there was a problem. I attributed the non pass out dizzyness episodes to standing up (from squatting) too fast. I do eat very clean - no junk food - well not NO, everybody has a carnival funnel cake once in a while but no fast food ,doritos or chemical preservatives - food like that and I feel this is key to me feeling so well - I juice a raw drink every day. I could exercise more - I am active and use meditation, mindfullness and breathing exercises on a regular basis.
@@Romans15.32 You are doing much better than I am. I can eat healthier and lose weight and I think it will help a lot.
@@hannahrosa5485 if you would like to email. Eyeice4u@gmail.com. You don't have to diet parse but eliminating some key things which many people use but are harmful - soda, is life changing. If you are a soda drinker and cannot give it up ~ reduce slowly till it has less of a hold on you. Certain things really muck up the interstitial fluid surrounding your cells. Just giving up chemical additives makes an incredible difference. A super good rule of thumb ~ Just eat God's food. There is truth behind the little childhood rhyme ~ an apple a day keeps the dr. Away.
I'm taking berberine supplements. It helps with the palpitations.
What kind of doctor do we see for POTS
For some people it's really whoever they can see but combo of neurologist and cardiologist. Neurologist diagnosed me and my beta blockers were prescribed from cardiologists.
The doctors that diagnose POTS the most are Cardiologists/Electrophysiologists. One of the most predominate symptoms of POTS is rapid heart rate and palpitations so naturally that would bring people into the Cardiologists office. Neurologists and Endocrinologists are also doctors that diagnose POTS.
Audio is very low even on high!
correct.
What is POTS?
80's Nostalgia Guy google it. There’s a lot of info out there.
Search "Postural Orthostatic Tachycardia Syndrome" if searching "POTS" gives you cooking pans and weed. (Google doesn't always dicifer acronyms well.)
Hi 80's guy. POTS is a form of dysautonomia. Teens make up a big group of this syndrome (a lot grow out of this syndrome by their early 20s) and so do women. Men do suffer from POTS but it is more predominant in women. Dr. Gupta describes this syndrome very well. There are a few subtypes of POTS and in this video it sounds like he is describing the Hyperadrenergic subtype. There is Neuropathic POTS, caused by the same kind of nerve damage found in people with diabetes. There is Hypovolemic POTS where your blood volume is low. There is Primary POTS where the cause is unknown, and there is Hyperadrenergic POTS where the Epinephrine/Norepinephrine levels far exceed normal ranges while the person is sitting or standing. I believe they can be broken down and categorized further but medicine has not made it that far yet. All of these subtypes all have pretty much the same symptoms aside from some suffering more than the others in specific areas, for example the Hyperadrenergic subtype will normally have more tremors and higher blood pressure compared to someone with Hypovolemic POTS. The treatment for all POTS patients is different. Most people are told to increase their fluid and salt intake to increase blood volume and blood pressure, and wear compression stalkings to help with circulation and keep blood from pooling in the lower extremities. This treatment would not work for the Hyperadrenergic subtype because they have higher levels of "Adrenalin" being produced in their bodies. Naturally this would cause an increase in blood pressure, so adding more salt and fluid to the diet would only exacerbate the symptoms in this particular POTS subtype. The criteria needed to make a POTS diagnosis is mainly focused around your heart rate while supine and then when you are standing. If your heart rate is increased by 30 bpm in adults and 40bpm in children when you stand up from lying then a diagnosis can be made. POTS can be extremely debilitating and the list of symptoms one can have with POTS is very long. There are so many more factors at play here and we have only just begun to scratch the surface on understanding POTS. I hope this was helpful.
Wow, I wish I had someone like you in my area, POTS has ruined my life and I am unable to find adequate care
Please keep making videos on POTS!
Thanks Dr Gupta.. I have just started Mestinon.. literally today. Thanks for the explanation and research in the area. My doctor never explained the medication in respect of POTS. You explained it so well.
How is it going so far? Not too hard on your stomach? My POTS doctor put me on pyridostigmine in December 2022 and my life has become much better since he did. I've worked my way up to pyridostigmine extended release 180mg 2-3 times per day.
I know this is an old video but thank you for the great info. I was diagnosed with POTS 6 years ago and the rest of my health started to deteriorate. I ended up needing a pacemaker for tachy/brady. Just this year I tested positive for gACHR antibody and was diagnosed with AAG. We are starting this med while waiting for IVIG to be approved. I couldn't find a lot of info about it not specifically related to MG, so thank you!
Pots guy here ❤ glad you’re feeling better ❤ I was wondering if I could communicate with you on your process with a pacemaker? I have hyper adrenal pots but I also get 50 hr low as well. I’m thinking I need a pacemaker
Dr. G., I would love to learn about the long term effects of this med with your patients, now that 4 years has passed since this video was published.
I've been on pyridostigmine for a year and a half. Its not an easy drug to take but it helped me return to a much better more normal life.
Since my comment actually got likes I will assume someone is actually curious. I have been on pyridostigmine since December 2022. I was the sickest with POTS I had ever been since getting COVID in September that year and I was miserable. I couldn't stand for more than two minutes without shaking, becoming physically weak and almost passing out. I could barely walk down the hallway in our house anymore without needing to sit down. I would profusely sweat constantly while sitting around doing absolutely nothing but I'd be freezing at night to the point where I had to wear long pajamas in summer. I was sleeping almost all day, I could barely shower once a week because of how exhausting it was even with a shower chair. I was so weak I couldn't lift my arms above my head to put my hair up and I had migraines almost every day. I also have psoriatic arthritis that was flaring uncontrollably at the same time. I had gained a massive amount of weight from the inability to exercise and steroids to manage my autoimmune problems. My endocrine system also wasn't functioning normally, so I was a total dysfunctional mess. My doctor was about to have me fitted for a wheelchair because I was too weak to even walk a few feet into a store to get to the mobility scooters. As if that wasn't enough I had severe swelling in my ankles to the point water was leaking through my shins through permanent sores.
At first pyridostigmine was a nightmare, I always had diarrhea with my autoimmune issues and the pyridostigmine made that worse. I had to cut a 60mg pill into quarters to even tolerate it. By the time Christmas came I started to notice I didn't feel so horribly weak anymore. I slowly worked my way up on the pyridostigmine despite such terrible cramps when it would digest I'd be lying on my stomach rolling around riding out the cramping episode that happened when the medicine would start to absorb in my intestines. Diarrhea was a constant issue. Slowly but surely my stomach was able to tolerate more and more with a fair amount of suffering. Eventually the cramps and diarrhea both improved. Best of all my energy seemed much better within a few months. I told the wheelchair specialist at the hospital I wasn't sure I needed one anymore.
Eventually I noticed an improvement in literally all POTS symptoms. A massive increase in energy and a decrease in muscle and neurological weakness, especially as I worked my way up in dosage. My migraines became less frequent and the swelling in my ankles noticeably decreased. My sweating would briefly increase when increasing the dose but eventually it would even out, incredibly my sweating became much less severe and not so noticable in public. I was able to shower more frequently and eventually I stopped needing my shower chair. After a few years of effort and positive progress I was even able to exercise again. I eventually worked my way up to 180mg extended release pyridostigmine twice a day with my doctor recommending I try for three tablets daily.
At the same time my doctor switched my biologic and it started working amazingly well almost right away. I was able to get off prednisone and the stomach upset helped me lose all the prednisone weight I had gained and even more than that. The increase in saliva and tears that others would fine bothersome was a miracle for my severe autoimmune dry eye and dry mouth. Eventually my endocrine problems improved the more I was able to avoid steroids. The pyridostigmine helped me turn all my health issues around in the right direction.
That being said, it is a rough drug to take. If you have constipation it might be easier for you but my IBS-D associated with my psoriatic arthritis hated the adjustment. The initial increase in sweating was unpleasant but it did eventually improve the hyperhidrosis. I still sweat more than I'd like but considering the dysautonomia has destroyed my sweat glands, that problem won't ever go back to normal. The drug hyperstimulates the parasympathetic nervous system and by far the worst aspect of that is the bladder side effects. It feels like I have a bladder infection all the time and if I don't drink enough it burns to pee and when I have the urge to go I can barely hold it, I have peed myself before trying to make it to the bathroom so I regularly use the bathroom even if I don't feel like I have to go.
There's a shortage of pyridostigmine extended release right now and filling it every month at the pharmacy has been a nightmare. The drug shortage has limited my ability to take it three times a day to twice a day for now. Walgreens is careless with it, both instant and extended release pyridostigmine are hygroscopic which means they absorb moisture from the air and can't be removed from the original packaging. Walgreens kept exposing it to air repeatedly despite my pleas to stop. They act like I'm being dramatic when I refuse the drugs they've removed from the original packaging and they are still selling the medication they have degraded with repeated carelessness to others with Myasthenia Gravis, MS and POTS.
You shouldn't drink with this medicine. I accidentally made myself incredibly sick when I drank a glass and a half of wine with my dinner and medication. I always take it with food or it hurts my stomach if its empty. The alcohol speeds up the effects of the medicine and the pyridostigmine increases the effects of alcohol. When I had been taking more medicine than normal and drank the glass and a half of wine I accidentally sent myself to the hospital in an ambulance. The combination of extra medicine and wine caused a mild chlorinergic crisis. I won't detail the entire episode here (Google it) but it involved me projectile vomiting for hours in and out of consciousness while delirious and bright red and sweating profusely. For a short period of time while the hospital monitored me my pulse and oxygen saturation repeatedly dropped at the same time intermittently.
Why was I taking extra medicine? The way my gut has responded to the hyperstimulation is to slow things down dramatically. Now my guts literally won't function without the pyridostigmine. When I eat more when visiting our families for a holiday I have to take more pyridostigmine for my intestines to move the extra food through my body. I either seem to have diarrhea or I am so backed up my guts barely feel like they function. Other things that cause diarrhea mean I must decrease my dose and things that slow my stomach down mean I must increase it. If I must take less for some reason I am noticeably more groggy and exhausted the next day. Increasing the dose is a tightrope act between getting my guts to function and not making myself extremely sick from the extra medicine. I learned the hard way taking slightly too much more medication with alcohol is disastrous.
I am dependent on this drug now, I would have to wean off it incredibly slowly to get my stomach to readjust to normal life. I have lost 150+ lbs from all the stomach grief so it's not all bad dealing with the side effects. It killed my appetite and decreased my hunger for food substantially. Sometimes it can make me quite nauseated though.
Obviously there's a lot of bad side effects I just listed but it has helped improve my POTS symptoms substantially. I am back to exercising again after not exercising at all for 4 years. I walk 1-3 miles a day and am slowly returning to a normal life. The improvement in deconditioning as a result of increased exercise is due to the dramatic increase in strength and energy from taking pyridostigmine. Mestinon has been the best cure for my POTS symptoms. My blood pressure and pulse have decreased significantly since I was able to return to a daily exercise regimen. I was able to wean off multiple drugs that were no longer needed to treat various POTS symptoms. I went from being bedridden to basically living a normal life again.
For the final NSFW positive pyridostigmine side effect: hyperstimulation of the parasympathetic nervous system. My husband and I were able to start having a normal sex life again once I was healthier and actually had energy to have sex. Before I got sick I struggled to orgasm and it took alot of time and effort. Now I have the opposite problem and it's almost too easy. My husband joked that even with the severity of the side effects some people would be willing to put up with anything to fix an inability to orgasm. This side effect was quite a surprise when we finally discovered it.
So in summary it's not an easy medication to take but it helped me get my life back. Due to my autoimmune conditions I was used to frequent stomach problems and I was so desperate before the pyridostigmine I would have honestly tried anything. If you have constipation before starting the medicine you might not have any of the stomach side effects I did. Everyone is different but I don't think pyridostigmine is given nearly enough attention by the POTS medical community. If you gave high blood pressure the pyridostigmine will help with that too. If you have the low blood pressure variant I would recommend trying it after talking to your POTS physican. I would recommend starting low and increasing slowly and sticking to a lower dose than mine. Feel free to comment if you have any questions to my admittedly very long pyridostigmine comment.
I have been prescribed mestinon for POTS but very concerned about taking long term. I read that long term effects of can cause down-regulating of acetylcholine receptors. I stopped taking my 60 mg dose about a week ago and felt absolutely weak and terrible and couldn't function. I took the 60 mg again today and my strength came back. Please let me know your opinion on this and taking long term. I don't want to become dependent on a medication or have long term adverse effects. Thank you!!
Excellent video and information Dr Gupta. I have a prescription for Mestinon in my hand and I'm so grateful for it.
Did it work for you? 🙏
@@hikingisnotwalking Ah too bad! but glad for you that that works! Ivabradine gave me headaches so im hoping mestion helps.. Did you have any side effects on it? I guess its different for everyone :)
@@lynnvandalfsen3988 Ivabradine has stopped 90% of the internal tremors which is great and given me a relatively stable baseline to work with. I didn't have any side effects from Mestinon - it just didn't work for me at all. I gathered the data every day too so I could compare and whatever it does, had no effect. I think there are subtle differences for everyone in how POTS manifests so Ivabradine just helps me more with capping HR.
I wonder if this would also help someone with orthostatic intolerance (not POTS) and resting bradycardia w/ only very transient tachycardia. Or might it be contraindicated if someone's BP drops precipitously on standing?
I tried Mestinon but it caused dreadful diahorrea and nausea. Is there anything I could take in combination with Mestinon that could offset these side effects? I'm also allergic to Propanolol so am running out of options!
I have been dealing with what I just self diagnosed a few weeks ago as POTS+MCAS for 4 years, aggravated massively by COVID 8 month ago but I wanted to say that I had been treating it myself (doctors didn't believe me until COVID, now they do somewhat as I poop tons of blood and have an IgE of over 700, but are taking their time) by launching things at it and seeing what sticks and one of the things that stuck 3 years ago was Huperzine A which is an acetylcholinoesterase inhibitor + 2g of choline bitartrate bid (first thing I tried and noticed it helping a lot but only for like 2 hours, so I decided to add huperzine to prolong the effect). It is no cure and I didn't notice much of an effect in heart rate unlike with salt, but I noticed a huge improvement in brain fog and headaches .
What drove me to try it is that I had tinnitus+headache+brainfog+neck tension. After several months in that state I remembered the feeling from having tried aniracetam (didn't have much issues back them but wanted the performance enhancement), experienced that exact symptoms and completely avoided them by adding a choline source because racetams are known to induce an acute choline deficiency on some people. Then decided to try choline and it worked (interestingly enough only salt forms of choline help me, phospholipids don't). So maybe this set of symptoms could point towards who would benefit most from this kind of intervention. Also maybe a choline source could be a milder intervention for some people.
Just started mestinon but my neurologist says my POTS is significantly worse due to Mast Cell Activation Syndrome (GI symptoms) and control of that will also help. What have you experiences been with Comorbid MCAS & POTS and how do we get out cardiologists who become more familiar with the devestation that POTS can cause?
Thank you so much for this! I have a question. I’ve really been suffering with POTS and researched Mestinon, which I started this evening. However, neurologist started me at 30 mg 3 times per day. Is this too much to start? Should I see if I have pronounced side effects? Or should I just tough out any side effects and keep going? Thank you so much for all your great info! We do often feel forgotten by the medical establishment, yet we suffer so much.
Hey! Is it possible to develope pots after you develope PTSD ?
I did!
Yes, There is a German New Medicine explanation…
Thank you so much for sharing your knowledge in such a clear manner! If this drug can help me mitigate some of my symptoms while I continue to search for the root cause, then I owe you a million thanks for suggesting this "unknown" drug!
Dr, you are absolutely amazing, you are so loving, sweet, and beyond compassionate. Are you saying fight or fright? With all due respect dr, it is fight or "flight." I really appreciate all of your care, time, help, and interest in helping people. However, I do not see anyone trying to fight the "Root cause" the fix to remedy this. I and I believe I speak for everyone when I say this, do not want to live or manage anything, I, we want to eliminate them, abolish them entirely. The system is beyond broken and everything, every disease, illness, syndrome and or disorder, whether physical or mental, have a underlying root cause. We all just have to find it. POTS or subclinical POTS can be attributed to Adrenal Fatigue in the late stages, stage 3 or 4, Mycotoxin poisoning as well as certain vaccinations. I urge you friends, look and you will find...
Daniel
I don't want a stinking drug! There has to be a better way. Every time you take a drug it causes another problem.
BINGO. Google choline and/or betaine deficiencies in some POTS patients. Worth testing for these 2 or just try supplementing to see if u notice any improvement.
What’s the link to the paper?
Perfect said
Great, informative video. Thank you!
isn't it flight or fight? no fight or fright....also this imbalance core is from trauma i am finding.
What are your thoughts on Huperzine A as an alternative to Mestinon?
Very helpful. Just started mestinon!
What drug is better for Hyperadrenergic POTS: Guanfacine or Clonidine? Thanks
Thank you for this video, the information about Mestinon and POTS is much needed.
Hey I’d love to get your opinion if you see this comment. I’ve had anxiety about my heart since I was 15, I am now 20 and after I fainted with tonsiltis it went through the roof. I had chronic tonsiltis for a month and everytime I stood up it was hard to walk around. Now I’m over the tonsiltis my heart rate goes to 140 still everytime I stand up but I’m not as dizzy I only feel spaced out. I saw a top cardiologist who done a physical exam and 48hour ecg and said it’s not pots and said he jump in heart rate can be explained by other things. I’m just worried at the moment since it hasn’t gone away 3 weeks after the infection has subsided but I have slowly been getting better, I worry it’s pots with the consistent rise in heart rate upon standing
How are you feeling now ? Did it ever go away? If so how long did it take to go away on its own?
@@oliviaestrella2578 hey, yeah it did go away, I sometimes get the same fast heart rate but I’ve realised now that it’s the power of anxiety. I underestimated how anxiety can convince you of something without realising you are actually anxious
Thank you from France where after a year searching what is happening to me I begin to understand and find solutions thanks to people like you
I was given clonidine... Pretty much the same effect. Minus the gastric effect.
Can this drug ease stomach pain/improve digestion in POTS patients?
Thanks for your very helpful videos on POTS! I have had hyperadrenergic form for ten years and the only help I have is with water and salt although a month of IV saline infusions was great. It just isn't sustainable. So, any tips you give are welcome!
Salt for hyperadrenergic? I thought salt should be avoided for people with this type of POTS because of the increased blood pressure? I realize your comment was from 2 yrs ago, how are you doing now? Hope well!
One key piece of advice would be to increase intake of foods rich in acetylcholine, in order to allow the body to have an abundance to digest and recover from any stress response or activity. Also sounds basic, but chewing these really well helps with absorption. I hope it helps!
isn't it a receptor problem though? so no matter how much you have if it isn't getting in it doesnt matter?
@@susanmarshall8466 These foods, eggs, nuts, leafy greens, vegetables will nourish the body and balance the chemistry out. Remember that breathing practice and as much rest as possible is very good as well. Hope this is helpful.
What helped me most was going carnivore all ruminant diet plus big midday torso sun.
Would this have any positive outcome on people with hyperadrenergic POTS too?
~❊❤❊~
This is an amazing video! Your first comment about lack of research is so very true. As a nurse and a patient with POTS I have got to the point were I wont go to the doctors any more because I sound like a hypochondriac. I've had to get wise and work it out myself. We get lost in the system as we are not under 1 speciality and get moved from 1 team to another. Thank you for helping us become self advocates. X
I agree it is hugely dissatisfactory. All they want to do with my daughter is shove depression pills down her throat.
Can you please contact me? I have dysautonomia. Please help.
This is not my post. This post is from a lady on a Pots group that I'm apart of and I'm posting this hear.
She says and i quote
" I've said it before and I'll say it again: anyone with POTS/ dysautonomia NEEDS to get checked for csf leak or craniocervical instability. I was just diagnosed with a csf leak after 10 years of sudden POTS. An expert at Duke said that anyone with POTS symptoms matching those of csf hypovolemia should ask for a blood patch to see if it helps. My POTS went away after blood patch. Please research these symptoms, especially if you are hypermobile/EDS, have had any physical trauma, or have any neck or back problems. I cannot stress this enough. I know this won't apply to everyone, but my POTS was SECONDARY to the underlying cause that took 10 years to find"
i would be very interested in hearing her story and sharing it on my facebook page in case it can help someone
I’ve been checked for craniocervical instability at my ME/CFS clinic. It’s really interesting to hear that this applies to some and helps, which is great! Some with ME/CFS have these issues and have been helped by this too. But it’s (as with most things about ME/CFS and POTS) as confounding that it doesn’t help others and that these illnesses causes can differ so much from one person to another.
For me, the aforementioned wasn’t an issue. For me it started with a flue that never went away. It flipped my entire system and now I’m (as often described here) in a very imbalanced autonomic mode. I’m trying to reverse it and find a cause and a treatment for it, but it’s really hard,..
@@YorkCardiology there is now an increasingly documented small subset of pots/me/cfs/EDS patients being diagnosed, treated and completely cured following cfs leaks and craniocervical instability treatment and operations. As the comment above mine by Chris shows, specialists are increasingly considering it a vital exclusionary diagnosis. Unfortunately where I live, it’s still very difficult to access testing, let alone a specialist who can operate. But it is giving hope to many who fall into the subset.
@@JustussonSo what update u have friend?
Thanks for sharing York Cardo 5-30-19
Especially interesting as has been mentioned as a possibility for my likely POTS. Just waiting to see the cardiologist....
Sound is too low.
Dr. Sanjay,
Thank you so much for caring enough for your pts and for caring enough to share your continued education and knowledge. It means so much to those of us who are starving to get any new information for this condition that is afflicting my little girl and so many pts out there. She started being ill with what the GI doctor called constipation and IBS when she was 11yrs old, but why was her heart going so fast and she would pass out???She suffered horribly in admissions after admissions in childrens hospitals. She still is but with me pushing for tests they finally found out she had upper and lower slow motility that gives her excruciating pain along with everything you’ve just mentioned with POTS. Now diagnosed with Eds, POTS, Dysautonomia, gastroparesis, dystonia, seizures etc.... now she is 20yrs old and is worse and mostly bed bound. I pray that your UA-cam channel continues to grow quickly. We need doctors like you.
God bless you.
Maria Frometa, I am so sorry to hear that your daughter is suffering. I agree Dr. Gupta is amazing and we need more people like him that dedicate their time to helping others. There is another doctor just like Dr. Gupta that is not only a doctor for POTS but is a patient her self and suffers with EDS, Hyperadrenergic POTS and a few other things. She has so much research and experience behind her and I think you should check out her UA-cam channel as well. Her name is Dr. Driscoll and she also has a website called prettyill.com. I don't know if you live in the United States but she has a POTS clinic in Dallas, Texas that helps a lot of people who suffer with POTS. I hope that your daughter and you can find some comfort and some recovery from this very debilitating condition. :)
Please offer us an update on your daughter's progress.
I was diagnosed with POTS finally in October 2013 at UCLH, London. I had already felt confident about my self diagnosis several months before. I now live in County Durham and would really like to participate in any POTS studies. My local GP's have no genuine concern for this condition along with the comorbidity of fibromyalgia and adrenal insufficiency. My cortisol levels are too low without prednisolone. I am on medications that work for what we knew about this condition 10 years ago which was virtually nothing. I am educated, had a great active lifestyle as many other POTS patients have in common. I have alot of hypothesis on the subject as well. I feel myself slipping every year. My disautonomia has now really attacked my parasympathetic nervous system and now if I do anything, my core temperature goes up and I immediately sweat until we have a heat wave and then I cannot stay hydrated enough to sweat which as you also know causes fevers very quickly. I am happy to lend myself to science not just for myself, but to help forward the research of dysautonomia. Should I send a private message? You mentioned Newcastle for a colleague. I can get on a train. I am desperate for help. Thank you.
Thank you for your videos. I have a right bundle branch blockage ~ from birth. It wasn't diagnosed until at age 58. I am feeling great, have never had any real health issues. I take no medication. I had a lifeline screening last summer and they said, "possible conduction abnormality, further exam needed by your physician" I went to my physician and he did an ekg and said that is what it was and he said, "you were probably made that way". He also said if it starts giving you trouble you will not have pain, generally, it will cause dizzyness.That statement made it occur to me that through my whole life, maybe a handful of times I have had dizzyness and 2 times dizzyness with unexplainable passing out. The first time was around age 10 so that would have been 1969. In those days I don't think they even considered an isolated incident in a child to be anything more than what the home physician found at the time - fainted due to skipped breakfast. 🙂 Since discovering this information less than one year ago, of course it makes me want to take the best care of myself and find an interest in your videos. Thanks again, you have a sincere way about you.
Can you please do a video on sick sinus syndrome and blocked pacs?
Dr Gupta your coughing could be due to using your computer at night and suppressing your melatonin. This messes up your immune circadian rhythm. And as you are seeing sick people during the day you may not have the optimal defences at your bodies disposal. Just a suggestion.
Thanks for more info and the med suggestion! Anything New I learn gives me some hope that someday I’ll be able to live a normal life, again. 💖
Great info
Thank you so much for this gonna ask about this!
God bless you sir
Good information sir