My story/stroke-like episodes

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Hi

Im so glad i found this forum!
Looking forward to learn more and share as i also gain more experiance!

I will start by telling a little bit of my story, to see if anyone has the same experiance :grinning_face_with_smiling_eyes:

Im 34 yo, living with my two sons and husband in Norway.

I got diagnosed with Ehlers Danlos syndrome in 2017 after struggling for years with my general health. At that point i was well enough to work out 2-3 times a week, go to the mall with my friends and be a mom as needed, but i was not able to work.

In 2018 i got a neck injury on a rehab stay, where i was supposed to work out to get stronger and more healthy.

Shortly after i was diagnosed with CCI and AAI. (Instability of my neck)

Around the fall 2019 i started to have episodes of stroke-like symptoms.

The epiodes would come after neck movement, and be worse the more i moved my neck. When i feelt the episodes coming i could sometimes prevent by laying down in a nautral possition. This lead to me being bedbound on avrage 22 hour a day the past 2 years.

I normally have mild symptoms of these episodes every day, and bigger episodes from 1-2 times a week to month between.

The symptoms i have during my episodes might vary in strength from mild to bad, and some i only get on the worst episodes. But i will list them here in the order they arrive:

  • numbness in tongue
  • Headace and extreme pressure feeling in head
  • Confusion, trouble finding words, slurred speach, memory issues
  • Dizzy
  • Nauseaus
  • Dry eyes and mouth
  • Shaking/ feeling of being weak
  • Random jerks in hands and feet (like my foot may suddenly jump)
  • Feeling irritated
  • Right sided facial weakness/dropping
  • Extreamly tired
  • Difficult swallowing
  • Hearing my heartbeat in my ear

Sometimes:

  • feeling of shortness of breath
  • Feeling that i cant keep my urine, its feels like im about to pee in my pants but i dont actually. (Once i lost controll of the bladder)
  • Throw up
  • After one big episode i had Tongue fasciculations and tongue athropy for a long time after.

These episodes can last for hours, and the bigger episodes cause me to be extreamly tired. Almost like im in a coma state. I usually also struggle with my cognitive function for some days after the big episodes.

I can also have a little dropped face on one side a few days after the biggest episodes.

I have been dismissed by the doctors here. The first time i came in with an episode i got reported to the child protective service because they said i presented like i was drugged. Witch of course was not the case.

I will not go into detales about how much shit ive taken from them, but its been alot.

3 weeks ago i had a really bad episode, it lasted and lasted, and in the end i decided to go to the ER. I was admitted to the stroke unit where they could see my right side weakness in hand and foot, and also my face being dropped, so i got a CT and an MRI, luckily they could not see any strokes but since i this time have not recovered like i usually do, they will do more check ups, and amoung other things they will do a CT with contrast to look for Eagles. I still have a little dropped face on the right side, and some cognitive issues. Dont know if ive had a TIA or if its something else.

The doctors here does not seem very interested or knowledgable so will see what happens…:laughing:

My CT and MRI came back as totally normal, all though they mentioned fluid in the right sinus maxillaris and sphenoid sinus and that the right latheral ventricle is a bit bigger then the left.

(There is alot going on in my right side here😝)

I also have a ton of symptoms on a daily basis, but its the episodes that limits me the most.

Im sure ill forget half of it but to mention some of the symptoms: fatigue, neck pain, runny nose, gastro issues, generalized pain, problems regulating temperature and pulse, different kind of headaches and POTS with its issues.

Have anyone else experiance symptoms like this coming like a episode? Does this sound like it can be ES?

I am of course worried the episodes are due to resuced bloodflow of some sort, and that the bigger episodes are TIA.

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Hi Saxine,

I sympathize with your situation and hope you get the diagnoses sooner. Given the symptoms you have described here, there is definitely vascular involvement. At this point, I am not sure whether it is Jugular vein compression or Carotid Artery impingement or both or even Vertebral arteries involvement and other brain venous sinuses. It is also common to miss these compressions/stenosis in a normal CT or MRI as they are not looking for compression at all and might be after a bleeding or a massive occlusion which is easily visible on MRI. Also since your symptoms are worse when you move your neck, a static CT or MRI might not capture if there is intermittent occlusion of a Vein or Artery which can cause some of the symptoms you have. They need to do a DYNAMIC Angiogram/Venogram to see the blood flow when you turn your head left, right, back and front. So ask them to do that. They also need to include the NECK. A regular CT or MRI only captures the head and does not go down further to neck. Here is a case where a 60 year man suffers from jugular vein compression when he turns his ( Moving target: transient rotational stenosis precipitating jugular bow hunter’s syndrome). I am not saying you suffer from this but just to show you that it could be hard to detect it with normal MRI or CT without doing dynamic one.

Also since you suffer from EDS, (Snapple2020 is our expert on that), you might have higher chance of getting jugular compression and sometimes thromboses (clotting) in the Brain Venous system which can be difficulty to treat. In this 34 min youtube video (Dr. Fraser C. Henderson, MD: Differential Diagnosis of Headaches in the EDS and Chiari Population - YouTube) at the 2:46 Min mark, talks about a 20 year old lady that has Headache, memory loss, leg weakness, urinary incontinence …etc caused by thromboses in the straight/transverse sinuses. Again, I am not saying, you have this, but stroke like episodes along with EDS you have, makes me suspicious that you have Brain Sinuses involvement.

In general, you need to get your CT & MRI and ask for second opinion as there could be stuff missed( very common and many of us experienced that). Secondly, you need to have Angiogram/Venogram with contrast done on Head & Neck, preferable dynamic one. Since they took you in the stroke area, they should have checked this already. You also need to investigate CFS leak since they saw a fluid in the Maxillary sinus and your symptoms are alleviated by lying down. Bottom line is, do not stop at one doctor or one hospital, seek help everywhere you can. Wish all the luck

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I am very sorry for all of your terrible symptoms & especially that you are bedbound for so many hours each day. How difficult that is when you have a family & a life you want to be living.

KoolDude gave you a very thorough response with amazing suggestions, far beyond what I could recommend as his knowledge is beyond my experience. However, I will say that many of your symptoms could also be related to a damaged or irritated vagus nerve is it controls many bodily functions from the head down to the pelvis. In your list, the things I know the vagus nerve helps control are gastrointestinal function, anxiety, body temperature, swallowing, breathing, urinary continence/sexual function, blood pressure & heart rate, ( & I’ll add - vocal cord function).

Facial droop can come from an irritated/damaged facial nerve & the trigeminal nerve also plays a big role in the face & ears though vascular compression & lack of blood flow can also affect facial muscles as KoolDude noted.

Since you notice change in symptoms with different head positions, there is a very great likelihood of vascular compression happening w/ your head in certain positions (again, confirming what KoolDude said) & getting the dynamic testing he suggested will be the best way to determine what is being compressed in various head positions whereas tests done in a neutral head position will most likely show nothing significant.

I hope your follow-up scans are able to be ordered so they check the things KoolDude suggested as that will be your best chance of getting a diagnosis which will allow you to move forward toward recovery.

The CT scan to look for ES should specifically cover the area between your hyoid bone & skull base .
Please let us know how things go for you. We are all here for you for support & a listening ear when things are frustrating or hard, & to celebrate with you when you have some answers.

:hugs:

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Hi Saxine! That sounds incredibly tough for you, so frustrating to have not been taken seriously after all this time with these symptoms. I’m glad that you have at least got started now & that doctors believe you…I can’t add any more to KoolDude’s info & Isaiah’s…I’m sure that you’ve seen the doctors list, but just in case you’ve not, there are 2 doctors who have performed ES surgery that we know of in Norway:
•Dr Henrik Stenwig Li, Rikshospitalet, Oslo
•Dr Nils Petter Fossland, St Olaves Hspital, Trondheim
I don’t know the system, how easy it is to get referrals, or if they’re anywhere near you…
I hope that you can get some answers soon, thinking of you.

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I have EDS as well ): I have extreme pain, anxiety, brain fog, shortness of breath, horrible bone-cracking, and pulling sensations in my body. I totally have sympathy for you and am very sorry you have to go through this. But maybe you can at least take comfort that you are not alone. I have had a very difficult time, feel like the last 4 years have been wasted… However, I take solace in the fact that we are not alone and there is a path to get better, we just have to find it. This forum is a great place to remind you are supported in your pain. One thing that started to help my EDS is prolotherapy, maybe you can check that out. Also, I have styloid surgery coming up so I can certainly tell you how I do being that I also have your symptoms and have EDS. My surgery is the 29th.

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Hi

Thanks for all the replys and suggestions.
Sorry for the late reply, but its hard for me to prosess information when i have a lot of brainfog, so ive had to take it in small portions. Specially since ive had alot of extra issues now after the last “episode”.
I have read through the links you provided, along with alot of other stuff from this forum. Its really interesting to read when the head is in the right place :slight_smile:
The issue here in Norway is that its hard to find doctors at all that look outside the box, most people tend to travel to other contries for stuff like this. I have got an CT with contrast today tho, and i will post my 3D images here for inputs. My styloid does not look long, maybe a little thick if ever, and maybe also there is some calcefied ligament. From what i can tell… Also it is very clear that my C1 is a little too good of a friend with the arterys :laughing:
I am working with the 3D images now, and im excited to see what other think of it :smiley:

I wish you all a very marry Christmas, hope you get some good times with family and friends and that you stay as healthy as posible.

Lots of love :evergreen_tree: :christmas_tree: :sparkles:

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Thank you for sharing. I am glad i am not alone, and we can stand togheter on the path of recovery.
Hopefully it will be an easyer path in the future.
Yes, please keep me posted how your surgery goes.
I will keep you in my thoughts and pray for a good outcome! :heart:
Good luck with the surgory and Marry Christmas! :christmas_tree:

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Thank you!
I made an general reply below also, but i wanted to anser on the doctors in Norway.
I did see the list that was already posted, so i have noted these two doctors.
Its not the most simple system but i will for sure do what i can to come to one of these doctors.
I dont know if my images show “enough” problems with the styloid prosess/ligaments to be aknowledged here but maybe he can point me in another direction if he dont think the styloid and ligaments is whats causing the compression.
I am glad to have this forum for information and support! :heart:
Wish you a Marry Christmas :christmas_tree:

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Thank you for the reply.
I made a comment under all the answers but not sure if you will see so will post also under each.
I have read throug the links you posted and find them interesting.
It is very hard to get understanding and help for this kind of issues in Norway. Even with the most specialized doctors. But with the information provided i will at least try as hard as i can.
I have done a CT with contrast today, and hope it can at least point to something.
I will try to get a refferal to the doctors recommended on this forum, and hopefully it will point me in the right direction at least.
Wish you a Marry Christmas :christmas_tree:

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Thank you for the reply.
I am aware of the vagus nerve, and possible connection, and i for sure think i might have some of my symptoms from that. Its a complex issue for sure!
I have done a CT with contrast today, and im working on getting some 3D images to post here. Maybe you experianced forum readers can see something that i can make sure to ask the doctor about when she call with the result.
I wish you a Marry Christmas! :christmas_tree:

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Saxine,

Thank you for taking the time to reply to each post. That was very thoughtful of you. I also want to say how excellent your English is considering it’s not your native language. You write very well!

I hope you’re successful at converting your CT into 3D images as we are more than happy to give our non-medical opinions here. When you see a doctor about the possibility of having ES, take along copies of any research articles where symptoms such as yours are mentioned in relation to ES. This can be very helpful for the doctors as you are giving them information written by their peers which they may not have. Some doctors think they know it all but the good ones will take the time to listen & consider new information. I hope this is the kind of doctor you encounter.

I wll pray for you to be well received & to get a diagnosis & help for your symptoms so you can recover.

I wish you a Merry Christmas as well & much hope for a healthier New Year!

:heart: :pray: :hugs:

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Thank you!
I have spent alot of time online reading medical stuff. Haha. I also have gaming as a hobby, and talk alot of english with my gamingfriends.
Was a little harder writing from pc because im used to having my phone kick in the autocorrect all the time :stuck_out_tongue:

Yes thats a good idea, i will for sure look for some relevant reasearch to bring to the doc.
I already have a ton saved so i will just have to go through witch is more relevant :slight_smile:

I did manage to get my 3D pictures very well actually. Im pretty used to using computer so i got quickly into it. I had alot of fun with it actually :smiley:
I posted in a seperate post :slight_smile:

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@saxine you might want to read this one: Vertebrobasilar Insufficiency | Vascular Center | UC Davis Health

Given your neck instability, there is a chance it might be the main contributor to the symptoms you have.

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Hope you can enjoy Christmas with your family saxine :santa::christmas_tree::relaxed: