BP Spikes and Feeling Faint - Eagle's Syndrome?

General Eagle Syndrome Stories
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I was told I have Eagle’s Syndrome by my Chiropractor; right side styloid process is 3.8 and left is 3.7. These numbers don’t seem that long to me to be causing all my issues, so I wanted to ask if anyone gets EXTREME blood pressure spikes - suddenly, out of the blue - that can easily go above 200 systolic (and I recently had a diastolic number of 192!)? I am trying to figure out if elongated styloids can cause the extreme blood pressure attacks I get. The attacks can last 5 minutes to 1 /12 hours. The attacks are sometimes accompanied by what I have learned could be “dystonic storms”. The Moderator of this site has been very helpful and has provided me with a lot of information - I just was curious if there is anyone else having extreme and sudden BP attacks, that can just as fast turn to normal with a short time. I have a Virtual Televisit scheduled with Dr. Constantino in New York on February 8, but I am hoping to get in by someone’s cancellation due to my BP numbers and the nearly daily attacks I am having.

Thanks!

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Hi yes before my surgeries I did used to get episodes of very high blood pressure/pulse rate. I recall one at 225. They are not happening so much now so hopefully surgery could help you improve/resolve this.

I found avoiding aerobic exercises (except steady walk) helped keep things calmer. Viatom ring (Amazon) also helped me identify trigger events to avoid (eg. Head turns in my case).

General pattern I have noted over last few years is that as trapped fluid builds my oxygen levels drop and my pulse rate increases. Assume is due to brain ensuring it gets enough oxygen.

Hope you get helped soon. D

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In the words of my ENT surgeon, Dr. Hackman, “Size isn’t as concerning as the trajectory.” I’m actually having my shorter styloid removed first because of the direction it is going, maybe poking my spinal cord. My other side is completely fused and over 8cm long. But the side that’s concerning for me is 4cm from the styloid and then an additional protrusion going up from my hyoid bone over 2cm. I believe Dr. Constantino trained Dr. Hackman, so I would definitely confirm with him.

I have also been diagnosed with POTs, which gives me episodes like you’re describing. Coming up from a prolonged squatting position is the worst. My body thinks I ran a marathon. My heart rate can shoot up as high as you describe. I have exercise intolerance, and just vacuuming my house can leave me feeling like I had an intense workout. My left arm can take a while to become functional again during a bad event. I don’t get the distonic storms but have seen them in my Eagle syndrome research. I’m not sure if this video has been shared here before, but I think it’s relative and may provide you some insight, especially in knowing you’re not alone.

I’ve discussed this with Dr. Hackman and my local cardiologist, who is a POTs specialist, and they agree that “it’s possible” that the Eagle syndrome is causing the POTs. I’m having the shorter left side evicted on February 19th unless I can get in sooner. Dr. Hackman says that if my POTs symptoms aren’t alleviated or if I have any other symptoms, we will look at removing the other side.

I hope you can get in sooner; your symptoms sound scary, and the size of your styloid could still be causing them. Take care, February will be here before you know it.

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Your styloids are well above average (2.5cms is commonly assumed to be the average), and as @ectocake says, the angle is just as important as the length.
I hope that if you can get surgery that this will help!

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Dear @GodisAWESOME
(English is not my first language, please excuse my mistakes)

I have the same symptoms… BP Spikes, Heart rate extremely high, shaking all over body, feeling extremely cold, digestive problems and much more.My right styloid is about 4 cm long, and very thick and pointy. My left one is 4,7cm long but seems to have a joint which enables it to move along when I move my head. My right styloid seems to put too much pressure on the jugular vein, vagus nerve and other very sensitive structures. It stands very close to C1 which could mean, that C1 is constantly being manipulated. I have AAI (suspected CCI) as well. C1 might not be able to stay in place because of the styloid. Do you know if you have craniocervical instability? My doctors can’t tell me which symptom is caused by which diagnosis, but they all agree, that the styloidectomy is necessary to be able to work on the instability and reduce my symptoms . I very much hope they are right.
My symptoms seem to be triggered my head movements. My surgeon told me to try to not nod the head until surgery. Turning my head to the side is almost impossible. I feel worse when C1 is out if place. When I sleep I have to lie on my back and keep my head from turning sideways and keep the chin from moving to the chest.
What helps me is:

  • Vagus nerve breathing (longer exhale than inhale, 4 inhale through nose , 8 exhale through mouth)
  • Hot tea
  • sometimes, when I don’t shake to much, I walk through the flat in a faster pace and combine it with the vagal breathing
  • lie down on my left side, if my neck allows it
    Do you have anything that helps you to get through those storms?
    I hope I can get the surgery in February/march.

I would be happy to get in contact. I wish you all the best and I am sorry that you have to go through this.

Best, Teresa

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Hi Leresa,

WOW! I haven’t connected with anyone with symptoms so much the same as mine! I’m sorry you are experiencing all that you are! I certainly can related, as I, too, have all the same symptoms as you, except the digestive problems (although you never said exactly what yours are…). The BP spikes are what seems to set off the shaking over my body; it seems that this only happens when the spikes are 170 (systolic) or greater. One of the chiropractors (early on) that I consulted with said that the vertebral artery is being pinched at the V4 area and he feels the C-1/C-2 is moving causing the issues I am having. It wasn’t until I saw a local chiropractor that I found out that I have elongated styloids, and he felt this could be what’s causing my issues (pounding/throbbing/pulsating tinnitus/ vibration feeling in back of lower head). The first 1 1/2 years of my symptoms I could not sleep on my back or right side - and sometimes not even the left side - because the pounding pain in the back of my head was too great! I had to sleep sitting up in a recliner. After I was started on Metoprolol Succinate ER 25 mg. 2 x day, I started to get relief and until a recent chiropractic adjustment, I had not had a BP attack in 2 years (although I had the other symptoms, but at a lesser degree). This medication caused me to start losing strands of my hair, so I stopped it, but then the symptoms gradually came back and then I started having the bad BP spike attacks again. Other than my chiropractor who did the CT Cone Beam X-ray, no one has known what is going on with me. I have felt given up on.

One of the Moderators of this site told me that she felt I probably have the Vascular form of ES and because I live in Florida, the closest Specialist who treats this type is in New York; his name is Dr. Constantino, and he is doing a Virtual TeleHealth Visit with me on February 8, unless someone cancels and the appointment can be moved up. It’s been a rough nearly 4 years. I am hoping Dr. Constantino can figure this out by the GRACE of God.

By the way, I am able to turn my head without issues, although I don’t know if some kind of movement is causing the attacks I have. If you get a chance, do a Google search for Jim Beaver Eagle’s Syndrome YouTube Video with Dr. Ryan Osborne in California, as he has the body shaking, too, which Dr. Osborne said is even rarer than the rare Eagle’s Syndrome.

If you find out anything that works or the right doctor to help you, would you please share the information with me, as just about every day or two I feel light-headed and “not right” inside my head and all the attacks and the way I feel keeps me from doing much of anything. It is hard to pray, to read the Bible, to talk, to be on the phone, to be on the computer, etc. In fact, light from the computer and trying to make conversation seems to exacerbate my symptoms. The latter issue just started a few weeks ago, although I have had to end conversations about a dozen times since this all happened back in April, 2020 because my mouth feels like it has experienced a “work-out” or I chewed the biggest, hard piece of gum for hours. My mouth just gets “tired.” Fortunately, this does not happen with EVERY conversation, but it is happening more often and it seems to bring on the BP attacks I am having.

Are you in the USA?

God bless you and speed your healing. I will pray for you.

Julie

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Glad you are aware of the video with Jim Beaver and Dr. Osborne. I did some research a few weeks ago and came across it and found it very informative. I had considered seeing Dr. Osborne, but he is EXTREMELY expensive and takes NO INSURANCE.

I was tested for POTS, and it is thought I do not have dysautonomia.

I guess I will wait until Dr. Constantino can see me to see what he says. I’ll try to update this site for the benefit of others here.

Julie

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I’m very sorry to know your symptoms are so awful, too, @Leresa! I’m glad you have a surgeon or surgeons who are planning to help you. I don’t recall if you told us who you’re seeing, but if you didn’t mention it, are you able to tell us? A few of our members have seen doctors who didn’t want their names mentioned on the forum.

For both you & @GodisAWESOME, if you haven’t tried a soft neck collar to help limit the range of motion for your neck, several of our members have found wearing one of those to be really helpful in controlling neck movement especially looking down.

https://www.amazon.com/s?k=soft+neck+collar+for+neck+pain&crid=2VTO1EGIUOBLH&sprefix=soft+neck+collar%2Caps%2C210&ref=nb_sb_ss_ts-doa-p_2_16

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Hi ‘God’ (!), (@GodisAWESOME) - I’ve had similar huge BP spikes over the last 2 years & terrible head pressure, feeling like a stroke coming on. That has eased off now since starting BP meds, but then had months of POTs type of symptom with my heart rate going beserk just sitting doing nothing. Again, that seems to have eased of, all for ‘no reason’, but still have the BP & HR horribly when bending over. I have other symptoms of ES and shortly having scans thankfully, so hoping to get to the bottom of it. SO sorry about your experiences and truly hope you get sorted out.

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So sorry about all your awful health experiences. I’m not yet diagnosed, but also have had awful high BP and later very high pulse at rest for months for no obvious reason, but it fits in with my other symptoms that it’s ES as think it’s pressing on the blood vessels and nerves in the neck causing those other effects. I think it’s moving around a bit in the neck & easing off and on various vessels. Anyway, you sound awful with it and sincerely hope you get to the bottom of it and live pain-free with full head and neck mobility, Go well .

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I’m glad you have scans coming up soon, @Blodyn, & sincerely hope & will pray that they show exactly what is going on so you can move forward ASAP with whatever treatment will help resolve your symptoms.

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Thank you Isaiah. I saw a neurologist in December ( was referred a year earlier! not for ES reasons) but was grateful for the appointment as by then I had learnt so much from you and this group and other online research. Although he was looking at many neuro-symtoms, I made sure I brought to his attention about what I think is ES and the symptoms. I could tell he didn’t know about it, but he did listen. He said he’d order am MRI scan on the head (for my other symptoms) & an xray, but I said would he mind a CT instead as ES is best defined by that. He said he’d think about which other scan to go with the MRI. When I received a copy of his letter to the ET doc, it said MRI and CT, so I’m pleased about that. Having the MRI next week & not sure yet when the CT. So it was lucky really I had that neuro referral anyway, even though took a year to come through and that it was for symptoms that may not be to do with ES, but of course they could be too. Thanks so much for your kind words and I’ll let you know what happens. All the very best :slight_smile:

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That’s really great news about how helpful the neurologist was & especially that he took the time to listen & respond positively to your CT request. I hope between the MRI & CT you’re able to get a thorough diagnosis, @Blodyn.

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Dear Julie,

thank you so much for your kind answer! :heart: I am very happy to get to in touch you. It is the first time I can talk so someone who experiences the same. I am ill at the moment, but I will answer properly as soon as I am better! Let’s hope tomorrow.
I live in Germany. Do you use Facebook oder WhatsApp?
Be safe and all the best, Teresa

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Great that he listened to you, & hope the scans show what’s going on…

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Thanks very much, Isaiah, for your good wishes. I’ll report back in due course!

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Thanks very much, Jules.

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You’re very welcome!

I do not use Facebook, nor WhatsApp. If WhatsApp is the only way it is free for you, let me know and I can ask my husband to help me with it. He had to use it recently to help a friend who is out of the country.

No rush on getting back with me. I hope you feel better very soon.

Julie

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Hi Blodyn,

I have all those same symptoms. I even had the symptoms ease and the BP spikes stop for 2 years before coming back after chiropractic adjustments and stopping Metoprolol Succinate due to finding strands of my hair falling out. I am back on it, because I can’t have the type of BP spikes I am having going on. The HR tachycardia I was having finally stopped after about 1-1 1/2 years. Everything else has lessened, except now the BP attacks for the preceding reasons.

I have a virtual doctor appointment coming up with Dr. Constantino in New York, which one of the Moderators of this site told me about who treats the VASCULAR form of Eagle’s Syndrome. It is for February 8th, but I am hoping someone cancels so I can get in sooner, because the BP attacks are not wanting to stop.

Thanks for the information about the collar; I’m going to check that out, but I have NOT been able to pinpoint what sets off the BP attacks I am having - I just know that talking and bright light (from computer, mainly), especially for any length of time, causes the pressure/light-headedness to build in my head that then causes my BP to rise RAPIDLY.

I will try to keep everyone informed as time goes by. I am assuming he will want to do a CTA Neck with and without contrast. The only test I have had done that has showed anything about the styloid process is the CT Cone Beam X-Ray my Chiropractor did (lasted one minute). Showed 3.8 cm styloid on right side and 3.7 cm styloid on left.

I hope and pray everyone on this site gets answers and feels better soon!!!

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Hi Isaiah,

Any particular one better than the other for Vascular ES? I find lying on my right side to be worse than the left or on my back, but nothing really gives me much comfort. I would like to order one today. I don’t find (as far as I can tell, that is…) turning my neck makes a difference one way or the other. I can’t pinpoint what brings on the BP attacks.

Thanks.