Walking with my husband and heard a loud "pop" at the base of my skull followed by blinding pain on the right side of my brain. I stopped and grabbed my head, and looked at my husband. He had heard the "pop" too. It has happened twice in the last month, and it has been so loud that others have heard it as well. I am now dealing with memory loss, seeing floaters, and struggling to communicate my thoughts with others. I understand what I am saying, but others look at me with confusion. I am 38 yrs. old female with Ehlers-Danlos Type IV Vascular, Hypothyroidism, and have had 2 heart attacks. Weight is not a problem, I weigh 114 lbs. I do not trust most medical professionals, many have claimed "Science" to use me as a "guinea pig" due to my medical condition. I just want to get an idea of what is happening.
Have you had an MRI to try to diagnose your problem? That's the first thing that I would suggest--that you see a neurologist to get it ordered. You have a complicated medical history and the symptoms sound somewhat like a stroke, but I really don't know. An MRI would tell you.
I have such a fear of doctors now. I know my medical issues are complicated. That is one of the reasons that I try to get answers for myself and not depend on doctors. I have been told by professionals that they will only monitor the progression of my EDS, not treat me. I am not a person, but a number in a medical study. A Cardiologist decided to monitor my heart and I had to go in for CT scans with contrast dye every three months to monitor a heart aneurysm, and now I am allergic to the dye. The tests are worse than the symptoms!
Are there any treaments for EDS and if so, why don't you change doctors to get someone who will give you those treatments?
Was your aneurysm that large that they thought it would burst that soon?
You can find out what percentage chance there is of your aneurysm bursting. If it's a very low percentage, then you shouldn't need CT scans that often, unless it kept getting bigger each time. Did it? And if it is large, then you should be given the option of having surgery or waiting quite a bit longer. I can see why you don't trust doctors.
I've fired several of my doctors, exactly 5 of them. But now I have wonderful doctors.
I still think that you should try to find a good neurologist to see if they think an MRI would solve the mystery. MRIs don't have any dye and don't have any radiation. If you have had a stroke or something else serious, you need to find out ASAP.
Yes, the aneurysm is that large. I was given 4 years to live in 1998, and amazingly enough, I am still here. I was first diagnosed in 1998,and I was in shock. I was sitting in the exam room at NIH with my husband, and the doctor felt he was being kind as he was given me my "death" sentence. He let me know that I was helping others by agreeing to a battery of tests.
Months of tests resulting in two occassions of needing to resuscitated due to anaphylactic shock (allergy to contrast dye). I decided I was done. The tests showed ascending aortic dialation, mitral valve prolapse, and aortic arrhythmia. be It is comical to go the Cardiologist and see the look on their face when they look at my medical records!
During all of the tests it was discovered that I cannot hold stitches. Stitches pull through, and I am quoting my doctor, "The stitches pull through like butter!" That is one of the reasons that I have not been able to have the aortic wrap. They wanted to try (for Scientifc purposes of course), but the odds were stacked against me.
Yes, it does sound like you were used with all those medical tests. And were they just to help others? Why did you keep getting all those hazardous tests? They must have promised you something. But it doesn't sound like you got much for it. All of those CT scans have a ton of radiation. You should never had all those scans unless there was some really good reason which still escapes me. Do you know? Although it was extremely useful information that you can't hold stitches. Just think if you had had major surgery?
I wouldn't be part of any more studies at the NIH.
I got nothing! My father's side of the family all died in their early 30's due to ruptures (aortic or abdominal). My oldest was also diagnosed soon after it was discovered that I had EDS. I would do anything for my children and so I did whatever I could to help her, and that included dangerous tests. Yes, they used the " the test will save your children" card.
NIH has tried to "encourage" me agree to more testing, but I have refused. I have kept the same doctor for the last 4 years, and she is great, but sh
My doctor is great, but also 6 hours away. I have been feeling better and the feelings of confusion has lessened. I will just have to wait and see. I am still here and so I only assume it is not my to go!
Many with EDS do have other issues, and as u mentioned there r varies types of EDS, and it is important to know which type u have and if u have ne of the other conditions that many others seem to have as they all appear inerconnected...
I have EDS, tethered cord, Chiari Malformation,Hashimoto's thyroiditis,....
some can also have syringomyelia(syrinx), POTS, ICP...sleep apnea....
Finding the right Dr is key for ne of these issues and with EDS getting to one that specializes in it as well as a geneticist.
Maybe blood clots to the brain? I had similier but much worse, unbearable pain. The doctors, need to do tests, with contrast die, to make sure you are not sufferring from brain anurisms. You do not mention, if you are on anti-psychotic drugs, which can lead to NMS.
Sara is right. You need to find another doctor! She told me the same thing, BUT, it seems more like what i am going through! Last hosp. that decided to DNR me, without my permission were having a field trip on me. After 3rd, cat scan, & no idea how much radation they gave me?, i pleaded with them, what r u doing to me!?! They laughed, & said, how do u like us now?!! I go all i want is oxygen! Next thing i know, passed out, or went into coma? Woke up, next day, & my neurolist never even visit me? They put me in the mental ward?!, & fed me Abilify, & made everything worse. Went to Mayo, & my PC, neglected to tell them about my heart, & anuerism(vascular artery occlusion with cerebral infarac. Yes, i to fear doctors now, & retaliation! Just last week after 1 year, & my PC, still tried to tell me i did not have an anurism! I put myself on oxygen therapy, but that is starting to not work? I am very afraid, because i struggle every day, & have to go for my nuclear stress test tomorrow, & just looking for someone to go with me! My eyes r much worse than the photo. It just takes 1 bad doctor, & it seems like all the other doctors are afraid to speak up? Think, that is why my optomalist 'moved on", but ws nice enough to leave me with my real records. I am afraid, & think right now as you do. Left Ken a message, & hope Sara also sees this. I wish the best for you, & everyone else here on wed md the best! Steve
I forgot to mention, after all the doctors, hospitals, that tried covering up my cerebral artery occlusion, the day i ws flying back from the M Clinic, my ear popped at a very high altitude. I dont know if you had been ever lately in an airplane, or possible diving. It is called the bends. Also, i discovered oxygen therapy has done me wonders, & there r even hospitals with HBOT therapy, which has even higher doses of oxygen therapy for numerous diffent diseases, & etc. It has been around for a few years now. I thought i had discovered my own treatment and found out it had been around already! The good thing about HBOT therapy, it is like 90 miniute sessions, & i think they go on for 90 days? Not sure cas i just use my own oxygen machine. I still have damage & short term memory, but i got rid of a lot of my swelling in my ankles. I think my first attack was when i got bit by a small insect, & that took some time to heal. That ws like 13 years ago, & i think it was purpura henonk vasculitis. My last bout with vasculitis lasted 3 years, & am just starting to get somewhat better. First time predizone took care of it. I am no doctor, & i had to discover all this by myself, but i had many of ur symptoms. There are like 12 different types of vasculitis, & some never go away, well if they do, i am trying to say the bouts can return. Unfortunately i found out the hard way. I hope you find out what your problem is, & wish u all the best!
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