They tested all those and they were all fine, I’ve had spinal taps, mri, tested for tick illnesses, barium swallow, GI scoped, x rays ,ct, my ANA, SED rate, CRP, and any other blood test. I had spinal problems and I had low opening pressure on my spinal tap. My spinal problems were causing bad flow of csf was having terrible bad pain. Got that fixed and my symptoms overall have gone down maybe 10%. But my spinal tap made my symptoms worse
All of the testing is completely exhausting… and then still not knowing 100% is very frustrating. Have you been to Rheumatology?
That was my next appointment I have a family friend that’s a really great rheumatologist. I’ve spent a lot of money the past few months and this is the only thing that I have found that could be the source. So I want to slow down a tad on all the appointments.
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Calebp,
I don’t know if you’ve read any of the info on things that can help reduce the IH, but a couple of things that have helped some of our members are sleeping w/ your head fairly elevated (you’ll need to do that post op anyway for a bit so now’s a good time to practice 
)., and a few of our members found that taking a blood thinner for the short-term did reduce their symptoms. You could ask your PCP about getting an Rx.
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Does the thinner help with blood flow?
It has done for some- Dr Hepworth has sometimes prescribed it for his patients; here’s a link to one discussion:
Dr. Hepworth and Vascular ES - Welcome / New User Help - Living with Eagle
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My daughter has been dealing with POTS and hEds for about 13 years and is now age 26. She started passing out at age 7 and then progressively got worse re: migraines, fatigue which took her down at age 13. She was evaluated at Vanderbilt (10 day inpatient study) and found to have low total blood volume (moderate 20%) and severe total red blood cell volume (30%). Even though regular labs dont show anemia, it makes sense with severe red blood cell deficiency, you would have fatigue. Hers is bone crushing and disabling. This low blood volume issue is common in POTS/dysautonomia. These specialized tests are only available in limited places. At one time she had Vit d deficiency which we supplemented and quickly fixed. We have tried all the medications, none of which worked or the side effects not worth it. Increased fluids and salt tabs with out much improvement. The only thing we have found that keeps the worst symptoms at bay at bay is 1L saline infusion weekly. The docs at Vanderbilt suggest that increased aerobic exercise may increase the blood volume up to 7%. Recumbant bike usage and/or water PT for those with severe POTS is what we found appears to work. Ribomag-forte supplement suggested by neurologist for migraines has been helpful. We are getting ready to do a round of regular acupuncture (2x week) to see if that stabilizes the nervous system. Its about the only thing we have not tried. Many POTS patients swear by the saline infusions. We sure do.
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This is so helpful and enlightening to me. I’ve not had diagnosis yet. I outlined symptoms on here before that sound like they can be explained by ES, but lately my throat contricts even more, have very high heart rate/pulse shooting up even just sitting doing nothing & also standing, bending over etc. If I try and do any tiny thing with slight exertion I feel like death, throat constricts so much, head pressure crazy, dizzy. I can’t do any simple, small task without it suddenly worsening & feeling like a stroke or heart attack about to happen! My BP is under better control with medication (though still a bit high, but not dangerously), but it’s the HR that is out of control. I’m waiting for a 24 hour heart monitor, also waiting for maxillfacial appt (2nd one as he dismissed things last time), plus neurologist (plus urologist & gynae - separate issues presumably!)… But it’s very helpful hearing on here about POTs and it’s possible link with ES as I didn’t know what POTs was either. The more we can arm ourselves with to discuss with doctors, the better. I still have the other symptoms like constantly very thick throat (discomfort talking much & swallowing sometimes), discomfort/pain when trying to hold right posture of head and neck, feeling of something in throat (I do have a bone sticking into my throat cavity below tonsil - which has to be the styloid?), bad heads, dizziness and swooning - and the chronic breathlessness & high pulse. I’ve had a dry cough for 18 months too that isn’t lungs and I have to be very careful to try and avoid even one or two coughs as the throat, head, pulse symptoms are terrible and feel like death! Sorry to go on, but just wanted to say thanks for all the ongoing info. It’s so interesting and helpful - and although you are all suffering in different ways, it’s comforting to know there are others with similar issues. I have to do something to make things better, but am concerned that it will take time to find the right doctor diagnosing correctly and able to help.
Thanks so much again Isaiah.
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Some of the symptoms you describe could otherwise be vagus nerve irritation- it’s one of the nerves commonly affected by the styloids. The styloids can also irritate part of the carotid artery which can affect heart rate. Just thought I’d throw that in there!
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Thanks Jules! That’s really helpful. I’m tending to think that whatever the styloid is pressing on is certainly the cause of at least some of my symptoms. Cheers!
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I agree with @Jules. The heart rate problem & feeling of breathlessness could both be vagus nerve & potentially carotid artery induced. The vagus nerve can affect our bodies from head to almost toe i.e. it helps control things in our neck, chest & abdomen all the way to bladder, bowels & sexual function. It helps innervate the vocal cords, heart, blood pressure, breathing & gastrointestinal tract. Even your cough could be the result of vagus nerve irritation. When it is irritated or damaged, many of our body functions can suffer.
As encouragement, we’ve had several members who had a dry cough that went away once their styloid(s) was/were removed. We’ve also had members w/ gastrointestinal problems that resolved once their styloids were removed.
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Thank you ever so much Isaiah.
That is incredibly interesting. Without jumping to conclusions, what you say makes a lot of sense to me in explaining some of my symptoms. Even my bladder & abdomen issues perhaps…Just want to say how much I appreciate this forum. Thank you so much.
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Hi all, so interesting to read the overlapping symptoms of pots and es. Because of my high heart rate symptoms, I’m just wondering how you are all feeling now? If some time after your surgeries, you still have your pots symptoms?
I hope you are all well and found ways to treat any residual symptoms.
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