Muon
-
Posts
52 -
Joined
-
Last visited
Content Type
Profiles
Forums
Events
Resources
Physicians
Member Stories
Information Resources
Links
Posts posted by Muon
-
-
46 minutes ago, Sushi said:
Have you ever had a sleep study to check for apnea? There are a number of medically validated devices for home sleep studies that give a great deal of information. My cardiologist prescribed one of these and it is read and signed by a doctor who is a sleep specialist. Since apnea is related to several medical conditions and can usually be successfully treated, it is a very helpful screening test.
No, did not do a sleep study. I don't have problems with sleep at this moment regarding breathing (I might idk, that's what the screening is for I guess). Had problems with sleep in the past when my POTS peaked, woke up every morning exactly at 5:00 am with a focal headache but that's another story. Also woke up once with a bell's palsy (woke up with my left eye open).
-
Not diagnosed with MCAS but I suspect it's playing a role in my symptomatology: Case description
No seizures though. One of the worst triggers is release of (pre)ejaculate.
-
Once every 10 seconds for the last two days in rest (sitting), so it's ~6/min (if I'm using a stopwatch, very subjective, age=35 in 2020). This needs to be objectified by measuring devices and for longer periods though. Sometimes breathing just stalls and have to remind myself to keep breathing. Thanks for this thread now I know it's far below normal. There also seems to be something going on with my heart, not sure what.
-
-
I had episodes of these, though they are rare. No idea if this had anything to do with dysautonomia related symptoms or any of my other complaints.
-
Check the guide inside the thread below and use the search function (CTRL-F) for terms like renin or aldosterone.
-
Very nice guide.
Postural Tachycardia Syndrome A Concise and Practical Guide to Management and Associated Conditions
Article has been placed in the link directory of the information resources tab:
-
Mast cells are able to release Renin and Chymase which lead to increased Aldosterone. Could AT1 receptor antagonist be helpful?
-
What is the gender ratio of male to female on this forum? And is there any asymmetry in gender ratio in POTS(any articles in literature provding a number?)?
-
Milnacipran - completely stopping my brain fog
Milnacipran is used for brain fog (fibro fog) in fibromyalgia patients. If this medication is already known to this forum then just delete this post.
-
The link from day 4 is from day 3. Here is day 4:
https://dropitlikeitspots.com/dysautonomia-international-conference-2020-day-4-notes/
-
Scroll all the way down to Table 1 and 2:
Cardiovascular symptoms in patients with systemic mast cell activation disease
-
11 hours ago, MTRJ75 said:
He seems to believe MCAS presents only in a way that you can physically see symptoms of swelling and breakout. And since you can't see any physical reaction, it must be something else going on chemically.
No, those are just representations which are the easiest to recognize. Mast cells can release other molecules that do not cause swelling. Mast cells release molecules selectively more often than showing exploding degranulating behaviour. They release cytokines/chemokines above anything else but you cannot base a diagnosis on that because those molecules are not specific.
Here is a video fragment talking about MC mediators @33:44 (Very informative video, one of the best, I highly recommend the full video):
Episode #58: Mast Cell Master with Dr. T.C. Theoharides, PhD, MD
-
3 hours ago, KiminOrlando said:
My Allergy and Immunologist dismissed Mast Cell issues for me because my tryptase levels were normal. This looks like so much data. What should I print and hand him for my next 10 minute appointment to see if I can get him to look further?
You cannot rule out MCAS by a tryptase test which turned out normal. Doctors don't have a clue and they will probably not look into MCAS. Ideally you want to test stuff when being symptomatic. To answer your question, I would show this one:
Or Table 2 from this link (basically a small modification of the link above):
If you pick one of the above you can add this one to that:
Relative utility of assorted mast cell mediators in diagnosing mast cell activation syndrome (MCAS).
Note that most MCAS patients get diagnosed by major criterion 1 + evidence of above-normal levels of MC mediators. And some by major criterion 1 + minor criterion: symptomatic response to inhibitors of mast cell activation . You can see the flexibility here. A video fragment talking about MCAS criteria: https://youtu.be/lrKqlv6VK_w?t=2485
This is one of the best MCAS videos out there in my opinion. You can watch it yourself:
Dr. Lawrence B. Afrin, MD, Immunology and Allergy: Mast Cell 101
Lastly here is a tip how to unlock articles if you want to do some research yourself, doesn't work always though:
How to bypass paywalls of scientific papers in general:
Copy one of the following:
1) The URL of a website showing a paper (yes the entire http:// webbrowser link).
2) DOI number (shown by abstract/paper or it's oftentimes shown at the end of an URL).
3) Title of paper (less chance paper shows up than method 1 and 2).And paste it into the search bar of https://sci-hub.se/ or https://sci-hub.tw/
Sometimes you will be prompted to type in a word (bot prevention). And sometimes the site doesn't show the paper but you can still retrieve it by using the save button at the left side. Replace .tw by .se and vice versa in the url if the website doesn't load.
Find the latest papers by using:
-
Claire: "Hi sjoh197. I am experiencing the same symptoms. My hands, legs, face and general body turn red and swell up throughout the day. I had all the allergy tests done as well as autoimmune but none of them presented any issues. My rheumatologist has concluded that it is blood capillaries swelling and flushing up to the skin. Did you manage to shed any more light on it since your post?"
Histamine and Bradykinin can cause swelling. PGD2 can cause flushing. 1) Histamine in plasma or its metabolite in 24h urine N-Methylhistamine and 2) PGD2 (its metabolite 11-beta-PG F2 alpha is prefered) in 24h urine or plasma can be tested.
"In mast cell patients, PGD2 is probably most well known for causing flushing. This happens due to dilation of blood vessels in the skin. Due to a well characterized response to aspirin, this is generally the first line medication choice. Some salicylate sensitive mast cell patients undergo aspirin desensitization to be able to use this medication." Ref
-
I would only show the table(s) under proposed diagnostic criteria and algorithms to your doctor like this one:
The PMC full text link above that table brings you to the paper about treatments. They don't have time to read a paper so show the table instead. Diagnostic mediators can be explored, 11Beta-Prostaglandin F2 Alpha, 24h urine should be on top of your list regarding POTS:
Evidence of Mast Cell Activation Disorder in Postural Tachycardia Syndrome
Tryptase is elevated in 15% of MCAS patients, not very useful (Most doctors are not aware of this fact). Response to inhibitors of mast cell activation is part of the diagnostic criteria for MCAS. Treatment comes down to trial and error where mast cell inhibitors are used daily (for most of them) for at least 4 weeks. There isn't much evidence for LDN as treatment for MCAS/POTS aside from a few case reports. An example of a treatment approach would be like this, start with an antihistamine from #1 for a few months, if that isn't working proceed to #2 and pick one from that class and try it for a few months. Work your way down from top to bottom: Treatment Approach for Mast Cell Mediator Disorders
-
MCAS can do that as well:
-
I made this compilation in a different forum but might as well share this with the DINET forum since MCAD can be an underlying cause in a group of POTS patients. It can be useful to some members here.
MCAD Diagnostic Testing, Mediators & Treatment Options
Cheers
-
I'm rarely active here on this forum in contrary to the poiscenter forum https://poiscenter.com/forums/index.php
I saw your post and experiencing somewhat similar complaints. There is activty affecting my spine, especially the lower back. My spinal health is slowly deteriorating. I'm developing new autonomic problems as well like bladder control problems and urgencies to go to the toilet. Standing on my feet gives me a pressure build up in my spine and my legs get weak. Pressure is being relieved by bending forward in a certain position or laying down. I think mast cells are more frequently active in that area than normal. I also start to develop problems in my neck. My age is 34, male. My POTS improved over the years for reasons unknown but I'm stuck with other issues. My lower spine also makes a cracking sound, when doing that too many times it becomes painful. High ambient temperatures make these symptoms worse, couldn't even do the dishes during hot days last summer because of the weak legs.
-
On 2/20/2013 at 9:40 PM, Canadiangirl73 said:
So here it goes: whenever my husband and I try to get intimate I get real sick. This happened a few days ago: I got tremors, chills, nausea, sky high blood pressure that lasted for over 24 hours, low grade fever, and worst of all, severe arrhythmias.
Could be MCAS or POIS. People with POIS could get sick from arousal alone.
-
Hello,
I wondered if there are any patients here on this forum with POIS. We have people at the poiscenter forum ( https://poiscenter.com/forums/index.php ) with POTS and POIS (myself included) or with ANS related symptoms. Some researchers believe the vagus nerve might be involved in POIS. Some forum members have posted their medical test results here: https://poiscenter.com/forums/index.php?topic=2684.0
There could be overlap among POTS/Dysautonomia/POIS/MCAS/EDS, so perhaps there are people here with POIS or misidentifying it with MCAS.
Low Respiratory Rate anyone??
in Dysautonomia Discussion
Posted
Similar thread: