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Got diagnosed with Eagle Syndrome. The less common vascular type. I have it on both sides. Here is arrows pointing out the calcified ligament on each side of my neck as it runs alongside the extracranial internal jugular vein. It is worse when turning the head because then it restricts or cuts off blood flow to the head. Here’s what wikipedia says about Eagle Syndrome:
Patients with the classic “Eagle Syndrome” can present with unilateral sore throat, dysphagia, tinnitus, unilateral facial and neck pain, and otalgia.
In patients with the vascular form of “Eagle syndrome”, the elongated styloid process is in contact with the extracranial internal carotid artery. This can cause a compression (while turning the head) or a dissection of the carotid artery causing a transient ischemic event or a stroke.
This explains lots of my symptoms. There is also concern about C1 and C2, but more concern about my tethered cord right now. I was told not to turn my head though. NO range of motion head turning! So, life is good as long as my neck is TIGHT, STRONG, and I DON’T TURN MY HEAD. Great.
Well, I have chaotic masto and lots of fluid in the subarachnoid space. Hmmm…
I suspect my weight issues have something to do with my brain being squished to varying degrees. (That is when I am making good food choices of course.) Waiting to see what Dr. D has to offer on this subject.
Hyperparathyroidism? I dunno… guess we have to wait with baited breath until Part II hits the presses.
Pictures Jack Nicholas and Tom Cruise…
I want the truth!
You can’t handle the truth!
Ok, random reference, but seems to fit how I feel at doctor’s offices a lot of the time. Unfortunately they have no “truth” to give. Only lies and BS.February 8, 2012 at 11:45 am in reply to: Mast cell diagnosed folks check this out… free 23andMe testing to further scientific research! #1731
Dr D, please still email them though and let them know who in your family has mast cell issues though so they can include your data in the study. Also, they may wave the $9 monthly genome fee. I am going to contact them to see if they will include my data in their study even thugh I did mine about 2 months ago.
Time to find a new cardiologist? Just kidding, sort of. If he doesn’t think that you passing out 3 times while wearing a Holtermis cause for concern… Also the results above are not unlike what a lot of us would get if we did an at home TTT. I would replicate to show you, but I’m at home alone, recovering from a recent concussion, and just not Ina mood to torture myself (although I often am.). You can look up Moxie14082 and see some of my YouTube videos. Especially the one where I kneel and then stand.
I did a full TTT after a friend (now passed) dx me with POTS from 2000 miles away. The heart rate going up is the POTS. What your BP does can be different for lots of folks. I’m the “classic” sense BP would just keep falling. For me, I was dx with neurocardiogenic syncope too so my BP will climb and climb as my heart rate spikes too and they both try to compensate for me being upright. Then, throw in some mast cell degranulation as my body gets stressed, some adrenaline from the hyperadrenic POTS, and after a while I’m light-headed, seeing black spots, sweating, confused, and losing parts of my hearing me cause the whole Jenga stack is about to come tumbling down when the vagus nerve and brain have a key malfunction. At some point the vagus nerve will try to rev the system up again and instead of a response to go higher the heart rate and BP crash and I pass out. Now, I’m the master of ALMOST passing out so this only happened at the TTT that I know of. After being provoked with one grain of nitroglycerin (that they give to heart attack patients) I lasted 4 minutes and fought to stay that long. In an instant my vitals were 150/100somwthing with a heart rate of 134 to BP of 60/40 and heart rate of 50something. I was out for 22 seconds with “seizure like” activity. Scarily, once I came out of it and recovered I felt “normal”. I even recognized the feeling of coming out of the faint on the other side. I researched and apparently it is not impossible to have syncope episodes in your sleep. I suspect that may be an issue for me at times.
Back to you though… POTS is not something every cardiologist gets or sees the big deal. I am fighting with the stress lab to do a simple blood draw for me to confirm my hyperadrenic POTS. It is important because I have EDS, mast cell issues, and POTS. The cardiologists there is telling the nurse who did my test “Big deal. Everyone who has syncope probably has hyperadrenic POTS. So?”. Me thinks I need to find another lab to do my tests and I terpret the results.February 4, 2012 at 3:24 pm in reply to: Today's lesson about tethered cord (a satirical piece) #1718
Welcome. Nice to meet another person who’s “fine” too. 🙂
Can I be 3rd if guinea pig 1 and 2 do well? 🙂
Oh… so pretty sure THIS pain was a good old fashioned abcess. I stuck some floss up in where the cavity was filled and flossed extra hard and out came some lovely pus and blood. The radiating pain has been slowly going down since then and the cold sensitivity is less as well. Still plan to call the dentist to have it checked out just in case, but was glad I said something to friends on Thursday night. 3 weeks of suffering for good old fashioned dental pain.
Ok… first things first. EDS skin doesn’t cause hands to blow up 3 times their size. Mast cells can do that though. Here is a great link all about mast cells (though it is pretty technical.) http://www.copewithcytokines.org/cope.cgi?key=mast+cells Here is another one; http://alford.grimtrojan.com/Mast_Cells_GI_Motility_Disease.htm (didn’t read this one, but got good reviews. 🙂 And THE place for masto info http://www.tmsforacure.org/welcome.php You can also go to YouTube and put in The Mastocytosis Society and it will bring up all their videos.
Now, as for the bug reactions… all my mast cell issues were triggered and kicked off by being stung by a wasp on the inside of the cheek in 7th grade. After that I had increasing sensitivity to things. It only gets worse as time goes on. My trigger list now is ever growing and I am always flushed.
I’m no MD, but as the mother of a 4 year old my cabinet has a bottle of liquid Zyrtec in it. The adult mast cell treatment protocol is to fill up as many of the histamine receptor sites as possible so the mast cells can’t use them. If you read the first link, you’ll see there is still plenty for them to work with, but at least we can do something to help ourselves. Most of us do well on the Z/Z treatment (Zantac/Zyrtec). Benadryl is an anti-histamine and I use if for break thru issues, like when I walk in to some place I can’t escape (like a family function) and someone has bathed in perfume or has air fresheners in the house.
The mast cells can create all kinds of gastrointestinal issues as well. They LOVE to hang out in the GI tract. So, not surprising your daughter is having issues there as well. Now, Dr. D will weigh in with more soon I’m sure but MY understanding and what has happened in MY case is that the mast cells have CAUSED the intercranial hypertension. There was not fluid collecting in the subarachnoid space in my brain in 2009 (as seen on MRI) but there is by May 2011. It has displaced my entire brain lower in my head and wreaked havoc. If you read the article called “Organic Brain Disease” in the Articles and Handouts section that pretty much describes what has happened to my brain.
I grew up in rural PA myself, so I can identify with the local doc reaction. ER docs are also mostly trying to “treat em and street em”. If you are so inclined you could discuss trying a course of daily doses of Zantac and an appropriate proton pump inhibitor for your daughter to see if it reduces her symptoms. Zyrtec made a huge improvement in my cognitive function within 24 hours. One day at work I couldn’t get thru my workload. The next day I was done before lunch! I couldn’t figure it out and the only thing that changed was I switched from Claritin to Zyrtec. So… Zyrtec could be an easy “trial” to see if she responds to a mast cell treatment.
Disclaimer Alert – This isn’t medical advice. Just telling you what I did and noted.
Just wanted to say that I wish I could answer these for you, but I’m not an MD. Having missed a dose because I forgot I will tell you that my body let me know RIGHT AWAY. Of course, everyone is unique so maybe you wouldn’t have the same reaction, but my body let me know with a splitting headache.
Well, I keep getting called skinny even with the scale not moving. I am smaller than I was at this weight before but don’t know how I’m 30 lbs denser without working out. I could still easily afford to lose 30 lbs so no worries unless the 40 I lost tries to find me again.
I got sodium bicarbonate tablets at the local pharmacy very reasonably. 100 for $2. No measuring or making capsules. Our can but them on Amazon too. Just an option if you get tired of playing pharmacist in the kitchen. No prescription needed to buy the sodium bicarbonate (aha baking soda) from a pharmacy.
From the EDNF site here are some geneticists at U of W. I know they have some research going on now too.
Peter Byers and Melanie Pepin
University of Washington
Department of Pathology
January 23, 2012 at 10:19 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1697
I am not a doctor but I have been to enough not to trust one opinion. Also, anything is possible. I would google symptoms of inter cranial hypertension, aka external communicating hydrocephalus and see what you come up with. Even your dr said it was not likely, not impossible. Who knows when the last time he read up on this was. My PCP is great but told me I didn’t have the eyes for EDS. I’m guessing she thought I had to have blue sclera. I have grey per the EDS expert, but as with any condition not every patient has every symptom. The same condition can present differently in different patients.