Hi may I ask how long did it take for your pt to disappear
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PT was a minor symptom for me, so I am not sure I have the most useful experience for anyone who really struggles with it. I believe I felt certain that it was solidly gone after about two weeks post-op
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Hi @jyoti just wanted to update – little to no change since my dual SGBs, which was a bit disappointing. My headaches seem to have been helped by both surgeries, as well as both: duration of focusing and focusing without pain (such as while doing computer work).
I’m grateful for both of those but the autonomic issues combined with MCAS or MCAS-like inflammation and ME/CFS symptoms still have a significant impact on quality of life and my ability to leave the house at all. I’m honestly pretty confused as to what the driving mechanisms are behind things but I have sort of zoned in on HyperPOTS and neuro-inflammation the last few weeks.
Not sure if the Dysautonomia/”MCAS” symptoms are stemming from Chiari-related/CSF leak issues in my past, or if they are a byproduct of the IJV compressions (and perhaps more reversible with time?). It’s really hard to pinpoint any trigger or source of things and it definitely is discouraging especially when devoting most of the day to research or activities to try and limit pain/heal.
I know that cold, midodrine & fasting (for a time) can help temporarily, but unfortunately that’s not a whole lot that can be easily replicated. I’m on florinef/midodrine/guanfacine for POTs and larger doses of Allegra/Pepcid/Cromolyn/Benadryl (PRN) for “MCAS” (as well as a strict low-histamine diet) but all of that is pretty much only good enough to keep me from being bed-bound.
I have been loosely evaluated for CCI at different points and don’t believe that it’s an issue, but perhaps I will look into other compressions soon, however I don’t know how common they are in males without an EDS diagnosis.
I recently started LDN and am hoping to see some benefits from that, but it’s pretty hard being patient at this point! Also looking to try vagus nerve stimulation later this month but not sure how much than can help.
Hope you have been doing better and that we can both start to make some progress in the long-term!
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This is disappointing dreamliner. You sure seem like you have been down every rabbit hole trying to feel better. I hope you get some relief. I recently saw a podcast with Dr. Afrin (MCAS specialist) and also have been hearing rumors about micro-dosing GLP-1 to knock down inflammation in MCAS/EDS. I have had bad acid reflux, IBS and gastritis for 30 years and took Ozempic for 4 months and my reflux TOTALLY disappeared. A few docs I shared this with blew me off and and said thats because you were not eating very much. Unfortunately I had to stop due to constipation but now that I am hearing about micro-dosing for inflammation, Im going to give it another try and make sure to stay on the constipation.
As for males and vascular compression, I recently found that in men, it (May-thurner) can show up in the scrotum as varicocele. I only know this because my son, age 35 has been complaining and scheduled to see a urologist. Only by accident did I find an old doc note for him as a child that said he had variocele but was told nothing to worry about. Well I found it actually is progressive and worsens as you age.
There is some doc in Texas advertising SGB’s and vagus nerve stimulation combo on the PNW EDS facebook group claiming its almost a cure for long covid. I hope you get some relief with the LDN. Ive thought about trying it myself. Works for some.
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@Snapple2020 I think that over time a lot more about this will be understood. We are in the forefront (oh, goodie!) of the exploration of vasculature/dysautonomia/compressions. I too am on a dual track (May Thurner being #2) and I know some people have gotten relief by addressing just one of their compressions while others have to knock them down one by ond.
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@dreamliner –I am very sorry that your styloidectomy results have not been more encouraging. It is so frustrating to go through so much and find the benefits are both tenuous and small. Like you, I am still– 5/3 months out–dealing with my usual level of dysautonomia though I continue to be free of pressure headaches and PT. Unlike you, my brain fog has increased noticeably since the surgeries. My blood pressure, which was high normal is down to low normal now, which is interesting and points to some autonomic impact. Conversely (?) my heart rate has gone up and stayed up, not so desirable when you already have POTS.
Interestingly, I had some imaging done last week and it showed both of my IJVs significantly more open than prior to surgery, with the dominant right ‘perfectly reasonable’ according to the IR who did it. So while this makes me happy–one of the big objectives of the surgery seems to have been achieved–it also points to the likelihood that nerve-related (both Vagus and sympathetic) may be driving the worst of my symptoms (and yours?) and that while they were supposedly freed up during surgery, compression or stretching or damage is just that easy to do because they are so small and sensitive.
It is hard being patient with almost anything and LDN seems to be a ‘wait and see’ kind of treatment. Keep me posted and as well about the vagus stimulation if you do try it.
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@Snapple2020 –I am preparing to try terzepatide (Zepbound) micro-dose for inflammation. I have heard amazing stories of it being a game changer in a matter of day or even hours. Trying to keep my anticipation under control! Let us know how it goes for you, please.
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Yeah we are at the forefront. I don’t mind be a ginny pig for those that come before me. At my age, I want to help my children (and others) have a better quality of life than I have had. As to MTS, here is a good video and updated info on POTS and MTS: Vascular surgeons Robert Hacker and Deena Chihade on venous compressions, stenting, and POTS - Standing Up to POTS
Im heading into IJV decompression in a month and the ES doc says I should get about 25% improvement per vascular decompression as I move down the body. We shall see as I intend to test out that theory. I know I have nerve impingement in my neck which I hope will be released during surgery. We think it’s the greater auricular nerve giving me fits. I had my ES hand surgeon say, your nerves are “soft” and prone to damage and compression. I have no doubt that a lifetime of unmanaged inflammation in my body has contributed to their decline. Im not sure it is realistic for me to expect a full recover with any intervention at my age.
I haven’t tried LDN but have thought about it since we have some laying around. My daughter pulled off of it after 4 days due to side effects. Everyone is so different and I know it has been a game changer for some.
They dont want you on GLP for at least 2 weeks before a surgery so I wont be trying it until after my surgery. I wasn’t really paying attention to my pain and inflammation while on Ozempic but felt good because I had lost 25 lbs. I didnt have any of the side effects such as stomach upset, vomiting etc. Aside from the constipation which I honestly did do a great job managing, I was pretty darn happy to have no acid reflux anymore. My assumption is it wont be a big deal if I am microdosing,
Do you mind if I ask you what dosing you are trying? Compounded injectable? Where are you getting it from? Costs? Im been scoping it out. My PCP doesnt want to manage me or prescribe since he doesnt know much about protocols but is supportive.
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I’m sorry that your surgeries haven’t made that much difference to you, but try to hang on to any positives…it can be a very long journey for some.
I don’t know if the article @Chrickychricky posted would be interesting, although obviously @Snapple2020 disagreed!
The Science Behind the Symptoms is a great podcast. Attaching a link to an episode on POTS - General - Living with Eagle
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Lots of good information in general regarding neuroplastic symptoms on the website symptomatic.me
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Thank you for another interesting link, @Chrickychricky! Has the site’s information been helpful for you personally?
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@Isaiah_40_31 Learning to work with neuroplastic symptoms has been life changing. It makes so much sense that people like us, who have struggled for so many years and have developed a lot of fear about what is happening inside our bodies, have subsequently developed a hypervigalent nervous system stuck in alarm mode. The language the brain speaks when it feels under threat is physical symptoms, real symptoms being generated by the nervous system itself rather than a specific structural problem. There was an interesting study done using functional MRI where they looked at the brains of people who had structural pain and then looked at the brains of people who had just gone through a difficult relationship break up and where told to think about that when in the MRI. The same areas of the brain are activated for both physical injury and emotional injury. So it’s not ‘in our heads’ like we are making it up but it is in our brains and luckily our brains have plasticity so we can create new neural networks to free ourselves from those symptoms. It’s super exciting work.
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Thanks for that info, hope it continues to improve things for you, does sound really interesting & potentially groundbreaking!
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I would consider pacing. You likely felt so good you overdid it. Your nervous system needs slow, gradual increases in activity after long periods of relative inactivity.
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