I am desparately seeking help with a problem that I have had for nearly two years. The first attack started with a numbness in the left side of my face which led to slurring of speech. My blood pressure (normally 110/70) was 180 over 95. I was taken to the hospital and was told that I had a TIA (mini stroke) although there are no tests to verify this. I was fine for several months then I had the same type of attack every month for three months the last one resulting in my being non responsive and being care flighted to the hospital. After each attack I have memory problems, I realize what has happened, but don't remember what was said to me or who I had seen. I have seen neurologists, endocrinologists, blood pressure specialists and my primary physician. Other than the first diagnosis of a TIA I have also been told that it could be a migraine without the headache. For the last six months I haven't been to the doctor because I am so tired of no one having any answers. Last week I had another spell with my blood pressure reaching 164/125. The numbness in my face and the slurring is not as bad as it used to be and the only warning sign is a dizziness and inability to focus. I have also noticed that my energy level is very low. Because there is virtually no warning other than the dizziness just before the blood pressure becomes elevated there is no way to be at a doctor when these episodes happen. Needless to say my family and I are very worried with a blood pressure that high I could very well have a stroke. I don't know where to turn, what doctor to see or what to do. If anyone has had any experience with this type of medical problem or a suggestion as to what type of physician could help I would be very grateful for the information.
just what did your results on all these tests come up with,anything at all? and do YOU have copies of ALL testing results and all the medical records from every doc who has ever laid hands on you? if not,get all of this stuff and keep it all for your own records. a lso go thru every single report to see for certain that 'nothing' actually showed up. you would be shocked and amazed at just how much and how often,mostly specialists will not reveal everything that is actually found on our own test results. this happens alot(way too often actually). getting all this stuff and just double checking everything and also asking questions about certain findings may reveal something that could have easily been missed.
you just have to be your own advocate when you have a condition that no one seems to know or understand. i have had to do my own research many times during the past years here just trying to explain the insane things my body started doing after spinal cord injury caused by a surgery done inside my cord. an actual TIA will generally show damage within the brain. if you actually had one,the evidence should actually be there. there would be evidence of an old bleed still visable,along with the damaged vessel. i know you can still see the TIA and stroke damage within my moms brain that occured like over five years ago.
do they at least have you on some type of med to try and keep your BPs from getting too high? one big thing that could be triggering these episodes is some level of sympathetic nervous system damage or para sympathetic. the SNS can be affetred at many different places within our bodies. this is where my BP and other insane symptoms are stemming from too. the kidneys also play a part in maintaining normal BPs as well,have they looked at those at all? the release of renin from the adrenals that sit on top of the kidneys are what interacts within the kidneys to trigger sudden ups and downs of our BPs. i would do just a bit of research on the kidneys and how they create our BPs just so you have a basic working knowledge to understand the process. you simply need to check out anything and everything that can affect our BPs so they can be checked,evaluated and either ruled in or out as a possible contributor. this is how any real Dx gets made actually,test and rule out til you hit on the answers.
but i would most defitiely start gathering up ALL medical records from every single doc you have seen and get every single testing result. you just need this stuff for your own records. if you should ever have to go to an ER,you just bring this stuff with you in some type of expandable folder(which you also can bring to like every furture doc appt too so you have everything) and the docs will have that baseline to work from. believe me,it saves you having to answer a ton of questions and gets things moving alot faster for you. you DO deserve some answers here. if there isnot actual evidence of any real bleeds within your brain,i seriously doubt that thisis what you actually had. i think the docs are just looking for an easy out since this is so complicated(or just over their heads??). force your docs to simply do their job for you.
the fact is,"something' is indeed casuing these episodes and it needs to be found out. this is what the docs job is all about ya know? push them and advocate for yourself or you wont get anywhere. been there done that one to death with my sons medical problems and mine too. just do some basic research on everything and anything that can affect BPs,then ask your docs about it,if for no other reason than to find out if it has been at least considered or ruled out yet. hopefully they can figure this out for you soon. please keep me posted,K? good luck, FB
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Thanks so much for the input and the advise. I do have copies of everything done and every test in a binder with tabs dividing everything into sections. When I was careflighted last year to a hospital they stated that I may have a pheochromocytoma. This is related to the kidneys and causes an sudden elevation in BP. It is a rare (probably why no one wants to believe that this is what I have) tumor that develops in the core of adrenal gland. I have researched this and have a majority of the symptoms. Afer my hospitalization I saw an endocrinologist and they did urine tests and could not confirm the pheochromocytoma. There are other tests that can be done to either confirm or deny this but as of yet I have not found anyone to perform the tests. I am looking to find another endocrinologist and pursue the other tests. I can't believe that after having a CT at the hospital which showed a possible pheochromocytoma no one wants to proceed with additional tests. I really appreciated your response to my posting, it is nice to know that you are not alone when dealing with something like this.