Just a thought…I do not know if or when my surgery will be, however it would be best for me to loose some weight and get into some kind of shape prior. I use to be about 5’9" 170 pounds since my ES journey started I have ballooned to 215 pounds. I’m guessing any type of activity that raises your heart rate and pumps blood faster into your head would not be good. Thought being in my case the blood is not leaving my head fast enough and I have been diagnosed with Intercranial venous hypertension.

I have had similar issues.
I went from about 150 to 200 pounds in about 6 months.
This is not medical advice, talk to your doctor- but I’ve been told slow, methodical walking is good.

I’m not too worried about my weight (in theory) because I’m normally very, very active. My pre-surgery tests have been done and I’m not perfect but I’m OK for surgery.

I’m focusing on keeping my blood pressure down and looking forward to resuming hiking, climbing, biking - etc. after surgery. Hang in there.


As @tokenegret suggested, walking is safe. Start w/ shorter distance/time & gradually work up to a couple of miles/day. I was on a Paleo diet prior to my ES surgeries which helped me feel really good & also helped me lose weight. Love those veggies!! Even just cutting processed foods/fast food out of your diet for a few months can help a lot.

1 Like

Yes, strenuous exercise is not a good idea! I had bilateral jugular compression which caused IH so couldn’t do any exercise other than walking or some steady swimming.


Seems to be a common issue. I too gained added pounds. Mostly due to nerve irritation in my throat and the only thing that provided relief was food/beverage so I constantly ate, and any aerobic activity flared my symptoms. I’m anxious to get back into a healthy routine…it’s coming soon!

As noted, you can’t go wrong with walking. Even interval walking (normal pace for a few mins and faster paced for a few mins) would benefit. I believe it’s good for both mind and body. Lots of water too!


My experience is different than most. The only time I can relieve the pressure in my head is if I do exercise. The hard part is pushing myself to do it. I run 3-4 miles most days just for relief. My doctor did say that most people that can force the blood through their head don’t get much relief from blood thinners. My weight has gone up and down mostly due to digestive issues. I’ll have a few months where I drop a bunch of weight for no reason and have problems digesting food. Dr. Hepworth said it’s Mast Cell Activation but I don’t know much about that.


You’re not alone, I was able to manage headaches and occasional tiredness for very long time with regular exercise. Not sure if that was simply too much when symptoms hit me with vengeance in early 2020, or I ruined my neck tissue and the vein(s) with active lifestyle by then.

1 Like

If Dr. Hepworth has mentioned (Mast Cell Activation) MCA, it might be worth getting checked out for that. It is a disease that can be progressive. You could start w/ a gastroenterologist.

I’ve been trying to get more information from him but haven’t had much luck.

I’m sorry about that. I’m surprised he’d mention it then just drop the ball rather than giving you suggestions about what type of doctor to see to check it out.

I had my procedure from Dr. P on 5/25 and I am still waiting for him to consult with his colleagues and get back to me. I sent several emails and made phone calls. Everyone must be on vacation.

You’re not the only one.

1 Like

@Bc2 & @stuuke - It’s soooo frustrating :rage: & a bit demeaning when you want/need answers & the person who can provide those is too busy or unavailable to give them to you in a timely fashion. I hope for both of you to receive the long awaited phone call, email, text or whatever communication your doctors use, ASAP so you know how to proceed.


I love Dr. Hepworth but he can be a bit all over the place like that. He throws a lot of solutions at the wall wanting to see what sticks. He’ll mention an idea in one appointment and then never again.


I’m losing my patience with him but my only other option is starting over with a new doctor. After the last several experiences I’m not sure I have it in me to start over again.


You’re getting practice in exercising patience, @stuuke! That will come in very handy during post op recovery. :wink:

Meanwhile my wife saw a doctor for carpal tunnel syndrome on Wednesday and they said they could get her in for surgery on Tuesday :joy:


I’m sorry stuuke. I know just how frustrating that can be… He has very long waits and again, sometimes it feels like he’s all over the place. I would recommend making an appointment with one of his NPs (I’ve seen both Rebecca and Allison Love, and they’re both great). They have shorter wait times, but also seem to answer questions much more clearly. I’ve had a few times I’ve just said I had some questions I wanted to come in and ask, and asked to make an appointment with an NP.

Hope you find some relief soon!


we (my daughter and I) were lucky recently to find an excellent GI who has expertise in gastroporesis and Mast cell disorders. My daughter has severe POTS and Ehlers Danlos. I have the EDS myself. Apparently GI issues are common in EDS patients. So is SIBO. small intestinal bacterial overgrowth. My daughter did test positive for SIBO and her POTS doc also suspects she has some mast cell issues. She is soon to start on a 2 week antibiotic regimen for the SIBO and we will see where it leads. Anyways… not easy to find GI’s that deal with mast cell, etc. This GI did refer us to a Naturopath to manage the SIBO regimen. You are starting to hear more about the importance of gut health and how it impacts your overall health. My daughter we given RX for cromolyn (given in mast cell patients) for her GI issues previously and it is one of the rare medications that actually works for her. The naturopath just suggested an OTC product also called 'Seeking Health Histamine Block" for mast cell and GI issues.I dont say this often about doctors but this naturopath is sharp and has alot of experience with this.


I’m so glad you’re both making headway into your digestive issues, Snapple! I agree that more & more research evidence is pointing to gut health as an indicator of overall physical health.