Jump to content



Recommended Posts

Anyone experience these symptoms, been diagnosed? One of my more prevalent remaining symptoms of my POTs flare is symptoms that are similar to Carotidynia. I have only R sided ear pain, neck pain....when it gets really flared then I get lightheaded, head feels like I'm descending too quickly in an airplane (is this cerebral hypoperfusion?).

I think technically I no longer fit the criteria of POTs as my HR resting is around 86-92 and when I tach it's only about 105...My discomfort level is great once I get to 96 but my numbers are still much lower than most of you folks. I still have some stomach pain, bloating, urinary pressure, adrenaline spikes at night and fatigue, very occasional pre syncope only. Compared to Jan/Feb of 2012 I am much better. It's surprising what we can learn to live with.

It just feels like this vessel is not functioning and I have begun to notice R arm weakness, a little bit of tingling, and my vessels in that hand and arm just pop out on occasion and they feel hot!!

These symptoms I believe were much better when I was dosing with hydrocortisone which I've successfully weaned. I use 2 advil in am and 2 in pm to control. If I decide not to take the pm dose then my body knows it. I would love to jump back on HC for a little during my flare months but I'm just about to start some testing with a new rheumatologist and I don't want to have HC in my system

Any thoughts?

Link to comment
Share on other sites

I have had carotidynia several times. When I get it I get severe pain in my neck veins and my blood pressure spikes really high.....I can literally see my carotid artery throbbing very forcefully in my neck and it is very painful! the only advice I have been given to help is anti inflammatories......small dose beta blocker helps a little too because it slows down the blood flow a bit.......

Link to comment
Share on other sites

Thanks. I'm staying on the advil to keep down inflammation. I recently read that Carotidynia occurs more in the winter time so I'm just going to keep on pluggin along here. I'm due to have some autoimmune bloodwork (waiting until next week so I can work thru the Christmas week since bloodwork pretty much slumps me over)...once the bloodwork is done I might add a little bit of the HC back into my plan for a few weeks. We shall see. I have never tried a beta blocker. I usually have low BP's and borderline tachy. Yesterday was a tachy day with no air...go figure. Happens every time I post that I'm 85% better. :-) Also, I'm a big Peter Gabriel fan

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...