I had what I’m sure was a mini-stroke last night and the drs said a lot of the same things about how I am healthy and young and it probably wasn’t that. Thank you so much for sharing your story. I’m also awaiting genetic testing for vEDS which is how I came upon your video!
Katie, thank you so much for sharing your experiences and stories. I have found them helpful to know what to watch for. My family has recently found the COL3A1 as the cause for the dissections and deaths in the family, and I have tested positive for vEDS. I have not had TIA's that I am aware of, but 5 years ago did have 'something' that appeared a little like a stroke in that my short term memory was gone, very confused, etc., but chocked it up to a bad silent migraine. Also, a year ago I had something that seemed like a major allergy reaction, but wasn't. I turned red in the face, lost strength in my muscles, walked to the bathroom feeling like I was fully drunk, and went down to the floor and almost passed out. By the time EMT's arrived, I was already recovering. EMT's and ER doctors and allergy doctors could find nothing wrong and told me to get an epi-pen for unknown allergy... that was before I knew I had vEDS... Pretty sure that would be bad to stick in me :o
Hey there! I’m glad y’all got the answer you needed with the VEDS diagnosis, but sorry that you also have this diagnosis. There are several places to get support and education now for VEDS- have you met anyone else yet or been in contact with The VEDS Movement?
I have not been in contact with the vEDS movement, but they are on my 'research list'. I have my first apt with Dr. Shalhub in Dec. Just learning as I go!
I remember you going through that ridiculous situation where they thought you had pots, when clearly it was a tia. Thanks for sharing this valuable information, it is seriously useful and veds needs the awareness
Thank you! It was sooo frustrating and scary. I really thought a big stroke was right around the corner and I would be seriously permanently incapacitated or dead. I’m so glad I finally got an answer and a solution, even though I don’t doubt that some people with VEDS do have POTS and I know my answer is not the same as everyone’s. ❤️
Hi Katie, I had many of these and was even accused of taking drugs the first time it happened in a grocery store.. finally after several, and seeing a good cardiologist, he checked me for a PFO ( hole in my heart) where blood clots can slip through. I had one! After it was closed/patched, I never had any more TIAs. It was an ordeal! Also I am going to write to you on your video about gum recession.
Hi! I’m so glad they were able to resolve that for you! How long did it take from your first TIA till they looked for a PFO? One of the first things they checked on me was a PFO and I didn’t have one. But it was still a year before I got an answer and resolution, which was so frustrating and scary! I feel for you going through a similar thing.
40y old here. I had 3-4 attacks ten years ago and the ER in Sweden said I most probably had a virus on my balance nerve. Didn't check anything else. Ten years later, in November I had a big TIA. The health care, now in Estonia started looking into why I got this. I did CT, MRI, heart tests, table flip 😂, epilepsy tests 😂 and all was good, except the scars in brain from older attacks. My neurological doctor then did a gene test on me since I did a list of all diseases in my family (there was EDS). I didn't know what it was. Last week I had two smaller TIAs again. I also got the results from the gene-test that I have vEDS. I have my first consultation with the genetics doctor in two weeks and I don't even know what to think. As you said, it causes so much anxiety having these attacks. Sometimes I think life haven't and will not change, and that I can continue as before and competing in ultra running, and next moment I don't even know what will happen tomorrow. 😂 Thank you for sharing your story. Edit: I've been on aspirin and cholesterol medicine since November. they claim that I have Carotid Artery Disease as well as vEDS. But I still got two small TIAs last week, at least weaker for sure. 😊 I'm happy you are free from them now.
Ive been searching for months for anyone who has had a TIA you are the first that I have come across that has taken time to reply to comments. If you could email or call me. Ive been going to all different types of doctors for what seems like forever now. Im worried I might be having TIA's and would like to talk to someone one who has a first hand experience or cam give any insight to my symptoms ...
I have VEDS, hyperadrengenic POTS and MCAS. I like to call it the wicked trifecta. Lol. I had my first TIA last June and 3 more by December. My cardiologist did a brain mri which showed small vessel degenerative disease. Of course he told me to go to a neurologist because it wasn’t his specialty. I don’t know if the svd can cause mini strokes but they’re quite scary although I the physical damage it seems was from me falling. I know I should have gone to a neurologist by now but so many things started happening at once. I ended up with six hernias. I had surgery to fix them but I found out afterwards that they tried to fix one and didn’t feel safe doing any more. I have NASH so my liver isn’t functioning properly which has apparently enlarged my spleen. I also now have a stage 4 pelvic prolapse. I had the same thing repaired a few years ago but the surgeon said my pelvic wall had wasted away so she tried to stitch whatever it was to muscles. That pain was unreal. I had a complete hysterectomy when I was 25 so I don’t have a uterus for support. I am 44 which is apparently pretty old for someone with VEDS so I don’t know if my body is simply given up. It feels like I am back at the beginning of this journey and I have no idea where to start or if I should even bother. Sorry for rambling. I am just curious if anyone else has had any of these extra problems. Thanks for taking the time to read my story. 🥰💕
I hope someone else here sees this and can relate ❤️ are you in any of the VEDS Facebook groups? There are a lot of people with VEDS there who probably have been through similar experiences too ❤️ Sending you so much love!
@@TranslucentOne Me too. I appreciate all the help you’ve given through your videos. I think my body is getting to the point that it’s too tired to fight but I will keep trying. Thanks for taking the time to respond. I am sorry for all you have been as well. Hugs 🤗
😂 at the time some of my doctors weren’t convinced they were TIAs and were suspecting POTS or dysautonomia- which I was really unconvinced of. It was a really frustrating really scary time for sure.
Hi Katie. My daughter and I were diagnosed with VEDS last year. We also have a haploinsufficiency and null mutation. Is this similar to your diagnosis?
Hi! I’m sorry to hear about y’all’s diagnoses. Have you gotten connected with others in the community yet? I have a glycine substitution (aspartic acid)
I had what I’m sure was a mini-stroke last night and the drs said a lot of the same things about how I am healthy and young and it probably wasn’t that. Thank you so much for sharing your story. I’m also awaiting genetic testing for vEDS which is how I came upon your video!
Sending you all the best wishes for answers you need ❤️
I had a stroke in 2018 i know the feeling and i hope you feel better soon
Katie, thank you so much for sharing your experiences and stories. I have found them helpful to know what to watch for. My family has recently found the COL3A1 as the cause for the dissections and deaths in the family, and I have tested positive for vEDS. I have not had TIA's that I am aware of, but 5 years ago did have 'something' that appeared a little like a stroke in that my short term memory was gone, very confused, etc., but chocked it up to a bad silent migraine. Also, a year ago I had something that seemed like a major allergy reaction, but wasn't. I turned red in the face, lost strength in my muscles, walked to the bathroom feeling like I was fully drunk, and went down to the floor and almost passed out. By the time EMT's arrived, I was already recovering. EMT's and ER doctors and allergy doctors could find nothing wrong and told me to get an epi-pen for unknown allergy... that was before I knew I had vEDS... Pretty sure that would be bad to stick in me :o
Hey there! I’m glad y’all got the answer you needed with the VEDS diagnosis, but sorry that you also have this diagnosis. There are several places to get support and education now for VEDS- have you met anyone else yet or been in contact with The VEDS Movement?
I have not been in contact with the vEDS movement, but they are on my 'research list'. I have my first apt with Dr. Shalhub in Dec. Just learning as I go!
I’m so grateful for you doing this for us all, Thank You Katie ❤
I don't have VEDS but suffered a TIA in June, so know what it's like. I do hope you're alright now. ❤️🤗
Thank you! Hope you are doing well too
@@TranslucentOne Thankyou. ✌️❤️🤗
I remember you going through that ridiculous situation where they thought you had pots, when clearly it was a tia. Thanks for sharing this valuable information, it is seriously useful and veds needs the awareness
Thank you! It was sooo frustrating and scary. I really thought a big stroke was right around the corner and I would be seriously permanently incapacitated or dead. I’m so glad I finally got an answer and a solution, even though I don’t doubt that some people with VEDS do have POTS and I know my answer is not the same as everyone’s. ❤️
Hi Katie, I had many of these and was even accused of taking drugs the first time it happened in a grocery store.. finally after several, and seeing a good cardiologist, he checked me for a PFO ( hole in my heart) where blood clots can slip through. I had one! After it was closed/patched, I never had any more TIAs. It was an ordeal! Also I am going to write to you on your video about gum recession.
Hi! I’m so glad they were able to resolve that for you! How long did it take from your first TIA till they looked for a PFO? One of the first things they checked on me was a PFO and I didn’t have one. But it was still a year before I got an answer and resolution, which was so frustrating and scary! I feel for you going through a similar thing.
40y old here. I had 3-4 attacks ten years ago and the ER in Sweden said I most probably had a virus on my balance nerve. Didn't check anything else. Ten years later, in November I had a big TIA. The health care, now in Estonia started looking into why I got this. I did CT, MRI, heart tests, table flip 😂, epilepsy tests 😂 and all was good, except the scars in brain from older attacks. My neurological doctor then did a gene test on me since I did a list of all diseases in my family (there was EDS). I didn't know what it was. Last week I had two smaller TIAs again. I also got the results from the gene-test that I have vEDS. I have my first consultation with the genetics doctor in two weeks and I don't even know what to think. As you said, it causes so much anxiety having these attacks. Sometimes I think life haven't and will not change, and that I can continue as before and competing in ultra running, and next moment I don't even know what will happen tomorrow. 😂
Thank you for sharing your story.
Edit: I've been on aspirin and cholesterol medicine since November. they claim that I have Carotid Artery Disease as well as vEDS. But I still got two small TIAs last week, at least weaker for sure. 😊 I'm happy you are free from them now.
Oh my that’s a lot to deal with! I wishing you well and that your TIAs cease. Those are so horrible
Ive been searching for months for anyone who has had a TIA you are the first that I have come across that has taken time to reply to comments. If you could email or call me. Ive been going to all different types of doctors for what seems like forever now. Im worried I might be having TIA's and would like to talk to someone one who has a first hand experience or cam give any insight to my symptoms ...
Sammymarmar1015@gmail.com
Thanks for sharing your experience with this disease!I'd recommend to watch Dr.Berg's video about tia.
Thank you!
Ty for sharing this. X
The stomach pain thing was what happened exactly rig he before my TIA
Interesting. Mine felt kind of like nausea, but I have bad acid reflux and had attributed it to that instead of the TIA.
I have VEDS, hyperadrengenic POTS and MCAS. I like to call it the wicked trifecta. Lol. I had my first TIA last June and 3 more by December. My cardiologist did a brain mri which showed small vessel degenerative disease. Of course he told me to go to a neurologist because it wasn’t his specialty. I don’t know if the svd can cause mini strokes but they’re quite scary although I the physical damage it seems was from me falling. I know I should have gone to a neurologist by now but so many things started happening at once. I ended up with six hernias. I had surgery to fix them but I found out afterwards that they tried to fix one and didn’t feel safe doing any more. I have NASH so my liver isn’t functioning properly which has apparently enlarged my spleen. I also now have a stage 4 pelvic prolapse. I had the same thing repaired a few years ago but the surgeon said my pelvic wall had wasted away so she tried to stitch whatever it was to muscles. That pain was unreal. I had a complete hysterectomy when I was 25 so I don’t have a uterus for support. I am 44 which is apparently pretty old for someone with VEDS so I don’t know if my body is simply given up. It feels like I am back at the beginning of this journey and I have no idea where to start or if I should even bother. Sorry for rambling. I am just curious if anyone else has had any of these extra problems. Thanks for taking the time to read my story. 🥰💕
I hope someone else here sees this and can relate ❤️ are you in any of the VEDS Facebook groups? There are a lot of people with VEDS there who probably have been through similar experiences too ❤️ Sending you so much love!
@@TranslucentOne Me too. I appreciate all the help you’ve given through your videos. I think my body is getting to the point that it’s too tired to fight but I will keep trying. Thanks for taking the time to respond. I am sorry for all you have been as well. Hugs 🤗
BRUH PRESSURE SOCKS FOR A STROKE?!!? WHERE TF DID THEY GET A LICENCE?!
😂 at the time some of my doctors weren’t convinced they were TIAs and were suspecting POTS or dysautonomia- which I was really unconvinced of. It was a really frustrating really scary time for sure.
10:51 are you able to write the word u are saying, I’ve never heard of it. I’m having these also
“High fibrinogen”- hope this helps! I’m so sorry you are going through this.
💛
Compression socks n salt is their answer always .. 🤧😵💫
Were you sweating?
Not that I remember
Hi Katie. My daughter and I were diagnosed with VEDS last year. We also have a haploinsufficiency and null mutation.
Is this similar to your diagnosis?
Hi! I’m sorry to hear about y’all’s diagnoses. Have you gotten connected with others in the community yet? I have a glycine substitution (aspartic acid)
This is so scary… and they can’t figure out the root cause . Sickening , get out of bed slow what a joke .