Hello everyone, I have a question to ask. I was wanting to know if anyone has had what is called drop attacks? I started having these about 3 maybe 4 weeks ago where all of a sudden I will just tilt to the right side unannounced and unexplained. It has only happened 3 times. I had an MRI back in November and brain CT scan along with a sleep deprieved EEG in December and everything came back normal. All of this started afterwards in January so I was sent out to have a Thoriac Spine MRI and a Neck MRI done which came back normal as well. I have not had a drop attack since the first week of this month but I do have pain and numbness in my arms, hands and legs that come and go from time to time. My cape area which is the area around my neck and shoulders have some minor pain. The range of motion in my neck comes and goes and I have dizziness occasionally and the ringing in my ears never even left. My neurogolist says that he can't find a neurological reason for why this is happening because all of my test have came back normal and referred me to a Cardiologist. My balance is terrible only when I have to do the motor skills test and close my eyes which was caught by a regular check up with my PCP. When she asked me to close my eyes and do the heel to toe test I could not put one foot in front of the other. With my eyes open I could not bring my finger directly to my noes on either hand which is why she sent me back to my neurologist. Does anyone have any idea what else could be going on. I feel fine and I am doing great but my PCP didnt seem to think so. I am still able to work, I have minor headaches from time to time that go away when I lay down. I don't feel that anything is going wrong and neither does my neuroglist.
Hi stillhappy,
With the Wikipedia definition of, Drop attacks are sudden spontaneous falls while standing or walking, followed by a very swift recovery, within seconds or minutes.... Similar to a 'faint' episode without loss of consciousness.
I have been have these for 45 of my 56+ years, both with and without loss of consciousness. Started early on with only about one per year, increasing over time, to peaking out in the mid 90's at many times in a week. At which time I was diagnosed with ACM. I had surgery a short time later (1998) in which afterwards they decreased. Yet they did continue, and have been increasing over the past 15 years, now at about one "event" per month. Crazy to say, but I some how have learned to live with it. I wish I could say that my headaches and pain were minor, but at this stage for me that is not the case. I live in pain everyday along with all the other symptoms that go along with it. Mine has progressed now to the point of total disability and being homebound and if it was not for the medication that keeps the pain somewhat at bay, it would be unbearable. The symptoms you describe are similar to those that many of us Chiarians have. You may just be in the beginning stages. I would suggest to you go beyond your PCP and NL and seek out the best care that you can find that specializes in these difficult diagnoses such as Chiari malformation etc. They have made and are making advancements every day in this area. Depending where you live in the country there are some incredible Doctors and research centers that can be of help to you. With some research, both Google and YouTube, you will find them in New York, Akron/Cleveland Ohio, Denver Colorado, Philadelphia and more. You owe it to yourself, your family and your future to do so.
I wish you the best of luck with your medical issues and your endeavor. It can be a long and difficult journey, as many of us have been through, but don't give up.
G'Pa Jack
Thank you so much Grandpa Jack, I have to have the tilt table test done on Thursday for suspected POTS.
Grandpa Jack said:
Hi stillhappy,
With the Wikipedia definition of, Drop attacks are sudden spontaneous falls while standing or walking, followed by a very swift recovery, within seconds or minutes.... Similar to a 'faint' episode without loss of consciousness.
I have been have these for 45 of my 56+ years, both with and without loss of consciousness. Started early on with only about one per year, increasing over time, to peaking out in the mid 90's at many times in a week. At which time I was diagnosed with ACM. I had surgery a short time later (1998) in which afterwards they decreased. Yet they did continue, and have been increasing over the past 15 years, now at about one "event" per month. Crazy to say, but I some how have learned to live with it. I wish I could say that my headaches and pain were minor, but at this stage for me that is not the case. I live in pain everyday along with all the other symptoms that go along with it. Mine has progressed now to the point of total disability and being homebound and if it was not for the medication that keeps the pain somewhat at bay, it would be unbearable. The symptoms you describe are similar to those that many of us Chiarians have. You may just be in the beginning stages. I would suggest to you go beyond your PCP and NL and seek out the best care that you can find that specializes in these difficult diagnoses such as Chiari malformation etc. They have made and are making advancements every day in this area. Depending where you live in the country there are some incredible Doctors and research centers that can be of help to you. With some research, both Google and YouTube, you will find them in New York, Akron/Cleveland Ohio, Denver Colorado, Philadelphia and more. You owe it to yourself, your family and your future to do so.
I wish you the best of luck with your medical issues and your endeavor. It can be a long and difficult journey, as many of us have been through, but don't give up.
G'Pa Jack
Yes Ms. Emmaline, I have to do the tilt table test for supsected POTS
Emmaline said:
It sounds like dysautonomia...it's treatable there is a long post on it, hold on I'll find it...
Thank you so much Ms. Beeba, I am just so feaked out to take the tilt table test because of how I reacted when I was in the hospital with the CSF leak and had to have my bed raised. I was begin panicking, my heart was racing like it was about to come out of my chest, my head begin to hurt real bad, I was really hot and sweating, the room was spinning and it felt as if I was going to pass out. The nurse had to put a nitro pill under my tongue and I explained all that to the cardiologist when he mentioned the tilt table test to me and said he wouldn't do it if I didn't feel comfortable but I decided in the end that I need to have it done, he assured me that he would not torture me and it was being done inside the hospital so that if anything goes wrong he would stop the test. Just thinking about doing the test makes my heart race. So hopefully I will get some answers and everything will go ok
Beeba said:
Make sure you check with dr prior if you are any type of meds. Taking a beta blocker during test can skew results. If at all possible you want to be unmedicated. This is the one time in life if looking for answers and good treatment that you actually WANT to pass out. I did all the standard tests for heart. By the time I convinced them to run the tilt test I was on a beta blocker that finally was working. Dr who read results said I was fine and passed. Electrocardiophysiologist interpreted results very differently and also basically threw the test out because I was medicated making it invalid. But based on perfectly typical symptoms, the fact that I had chiari and that the right medicine made me feel better I was diagnosed with it. That is the difference when you see an expert. He even had to bite his tongue to defend his collegue and said well he is an atrial fib dr I am a dysautonomia specialist. But trust me he was shaking his head. And if you want a personal opinion ditch your neurologist and stick with your pcp. Pcp sounds great and going on intuition and knowing you and I swear I keep trying to give neurologists a chance but they just never fail to fail me. They are just an awful experience. I always since day one have passed every neuro test and I have had three surgeries - all they can do is write a prescription they know they can't fix it so they just mask your symptoms. Symptoms are a sign and mean something. Once you know what is causing it - fine if you want to mask it - great!! But I want to know the cause first. Tilt test doesn't hurt at all but it is not a fun test by any means. Best you can do is relax and let your body show them if it is not working right.
Ms. Beeba, do you know of any other illnesses that go along with Chiari, I have just in the past month been sent to so many other specialist. I feel the same way about my Neurologist, just want to ditch him and stick with my PCP she is the absolute best, my neurologist just seems to brush everything off once the standard test comes back normal but my PCP seems to find out everything that he can't. She has been giving me the work up and finding out a lot and although I am feeling fine she always tell me dont mistake feeling fine for something that could actually been wrong with my surgery history and major CSF leak so when she see or feel that something is out of the ordinary she get right on it where as my neurologist is like whatever. I ask the question of other illnesses because I went in about 2 weeks ago just for a regular check up with my PCP and everything that I listed in my my original discussion was wrong and she also called me later with the results of my urinalysis (gross I know) and said there was blood in my urine so I had to follow up with her today and she did a stat on my urine test again it came back with both blood and protein. Also, I have a vitamin D deficiency that I have to take prescriptioned strenght Vitamin D that my bones mainly my joints just hurt all the time (hips, knees, elbows, and fingers) Can all of this have something to do with the Chiari? I had mentioned to my PCP that I feel fine for the most part I just cant sit upward for too without becoming dizzy, the drop attacks which I havent had one since the beginning of the month, I go to the bathroom all the time an occassional headache that go away when I lay down, my joints hurt, I am always always tired as if I never sleep or get enough rest. I have fnally gotten use to it because the worst part I feel is over and I hope to never relive that ever again.Beeba said:
Well now I feel bad for saying not a fun test!! You may be able to take Valium for the anxiety about the test. It should not effect the results because what you are describing is vascular Valium will control the panic but should not change results. Talk to dr about this option. But gonna say - TAKE THE TEST!!! You need to start now in practicing meditation, calming your mind and know you are completely safe. You are braced very well on the table and the second anything happens they bring the table immediately down and you wake up. Have you ever looked up any videos about pots? I believe I posted one on here where a girl exercises and goes well then out. I don't recommend doing this obviously but she did it to show what it is - and let's face it young people are nuts!! Keep in mind that in the past you may have panicked because you were about to faint - (you want everything ok unless they aren't) in this case if you go out you want it to happen under these controlled circumstances so you can get treated properly. Think about it that way. Trust me we are born with a natural fight or flight response so if you feel like you are gonna pass out your natural inclination is "get me outa here!!!" Try very hard to relax and in this case you just have to go with the flow - your anxiety will make the test harder to do and you may stop it before they find out anything conclusive. That won't be good. You don't want that. Your goal is answers - remember that. You have had way worse things. It doesn't hurt at all it is just an uncomfortable feeling for people like us. I didn't mean to raise your panic level.
stillhappy said:Thank you so much Ms. Beeba, I am just so feaked out to take the tilt table test because of how I reacted when I was in the hospital with the CSF leak and had to have my bed raised. I was begin panicking, my heart was racing like it was about to come out of my chest, my head begin to hurt real bad, I was really hot and sweating, the room was spinning and it felt as if I was going to pass out. The nurse had to put a nitro pill under my tongue and I explained all that to the cardiologist when he mentioned the tilt table test to me and said he wouldn't do it if I didn't feel comfortable but I decided in the end that I need to have it done, he assured me that he would not torture me and it was being done inside the hospital so that if anything goes wrong he would stop the test. Just thinking about doing the test makes my heart race. So hopefully I will get some answers and everything will go ok
Beeba said:Make sure you check with dr prior if you are any type of meds. Taking a beta blocker during test can skew results. If at all possible you want to be unmedicated. This is the one time in life if looking for answers and good treatment that you actually WANT to pass out. I did all the standard tests for heart. By the time I convinced them to run the tilt test I was on a beta blocker that finally was working. Dr who read results said I was fine and passed. Electrocardiophysiologist interpreted results very differently and also basically threw the test out because I was medicated making it invalid. But based on perfectly typical symptoms, the fact that I had chiari and that the right medicine made me feel better I was diagnosed with it. That is the difference when you see an expert. He even had to bite his tongue to defend his collegue and said well he is an atrial fib dr I am a dysautonomia specialist. But trust me he was shaking his head. And if you want a personal opinion ditch your neurologist and stick with your pcp. Pcp sounds great and going on intuition and knowing you and I swear I keep trying to give neurologists a chance but they just never fail to fail me. They are just an awful experience. I always since day one have passed every neuro test and I have had three surgeries - all they can do is write a prescription they know they can't fix it so they just mask your symptoms. Symptoms are a sign and mean something. Once you know what is causing it - fine if you want to mask it - great!! But I want to know the cause first. Tilt test doesn't hurt at all but it is not a fun test by any means. Best you can do is relax and let your body show them if it is not working right.
Thank you so much Ms. Beeba, I really do appreciate all the infomation that you have given me it really helps alot. The only thing as far as the Breighton scale that I have noticed is the fact that my knees bend a little more backwards than normal. I really do feel great its more like some days are better others but I find that I really do not have a very bad day because everything has become an everyday part of my life and so I have learn to cope with them. I just really dislike going back and forth to the doctor, so many differernt doctors but I am again so greatful for my PCP. She really come through for me, listens and understands that Chiari is a difficult illness to predict and we may never know what the root cause of a problem is but she knows and understand that they may or may not go hand in hand with each other and she never rule out or overlook the fact that what maybe going on with me could be directly related to the Chiari and I am so thankful for her. I have been throughout my life time to so many doctors and specialist but I can never get a direct answers as to what is causing the issues. The neurologist hadnt even noted in my chart that I even had Chiari when he sent me out to the Cardiologist, didnt even give a reason as to why he referred me or as to why I was even there so at the appointment the Cardiologist was looking at me as to why I was there trying to find a reason as to what was going on with me, it wasnt until I mentioned that I had Chiari that he then started putting two and two together and was like what you are describing to me is POTS and scheduled the tilt table test. I just have been sent from Rheumatologist, to the Kidney Center to every doctor and specialist that I can think of but I end back up at square one. The only person that listens and hears me is my PCP and she sometimes catches things that I don't even see and when I don't understand she prints things out for me or give me websites to look up on google. I try not to get worried or discouraged because I do feel just great, its just having to see so many doctors really confuses me. I am scheduled to have an ultra sound on my kidneys, I have to do the tilt table test and see the Cardiologist all in the same week. The bright side of it all is that I am no longer where I was from the summer of last year until the bginning of the Fall, I have come a very long way.
Beeba said:
Let's start positive - you feel good!! Thank heaven for that. Second if that dr goes concierge,moves or dies you follow them! What a lucky person you are - you have no idea what a unique position you are in. Ditch your neurologist. And keep ditching them until you really find a good one. As for related conditions - yes - ehlers dahnlos and dysautonomia are the two that are highest related. If you are unfamiliar with eds please google. I stink at doing links - but I do no Abby will more than likely respond here and she will post the article that is easiest to understand and read. Are you at all hypermobile? Again please google Brighton or Beighton scale. It is basically a test you can do on yourself more than 5/9 is considered positive. Here is basic test - do elbows bend slightly beyond straight- 1 point each side,knees same thing,thumb bends down to forearm - 1 point each side. Place palms flat on floor with knees straight -1 point. Ring finger bends Back beyond 90 degrees again -1 point each side. Bonus points if you can touch your tongue to your nose. There are many other characteristics common to people with eds. Soft young looking skin,uterine issues, lots of dental work, dislocations. I have it. I am the trifecta!! All three are rare conditions the odds become astronomical that you have more than one and they not be related. Mathematically it would be like 1 out of a billion. I also have a clotting issue - called anticardiolipin antibody - common in people with eds. I really fought the idea that I had this. It wasn't until I saw my neck in extension that I knew. I did go to genetics to confirm. I am not really the typical picture so I didn't believe it. I scored 7/9 no knees thank god!! But I have all my junk it seems on the inside. I just had my skull fused to my spine to hold my head up. I had 2 prior decompressions. 2nd fixed my chiari - gone- but yet I was still having lots of symptoms. Matter of fact I could make my bp go up almost 30 points by looking at the ceiling. My belief - it's all a guess at this point - that having those muscles stretched out twice they just never came back - eds. As a result my spine was compressing my spinal cord in many places. If you feel good and not a bobble head I doubt you have this - but it was my biggest issue - kinda need to be able to hold your head up!! I think prior to surgery I had such good muscles it wasn't an issue but twice they pulled those muscles and tendons inches away from my neck. It may have always been an underlying issue but it certainly was not an issue for me. I was previously a gymnast and actually was doing flips on my trampoline the week before my first surgery - then wham!!! Live took a big curve. And please never apologize for what can seem like sensitive issues. Sometimes unless you ask or put it out there you never find out that you are not alone. You wanna see a crazy conversation look up the old one on sex - now that got crazy!! Lol. I hope this info helps you. Oh yeah - absorbtion issues go with eds. I love the rx vitamin d - just got mine refilled. It makes me feel so much better. Isn't that what this was all for anyway? Let me know your thoughts.
I am having one done in March. I am way overdue for mine. The instructions are NO CAFFEINE fast for 4 hrs before the test but you can have water. You can take meds except NO diuretics or laxatives.