Can you relate?

Question

Hi my name is Jennifer and I am seeking help! I am a 23 year old college student who is suppose to graduate in December. I have not had the surgery for this because I was not a candidate since mine was 4mm. However, in June I took a turn for the worst. I have my good and bad length of times where every time it gets worst, I experience new symptoms. Does anyone else experience this? I am having difficulty remaining in school because I have been having episodes (chiari symptoms) during my classes. Along with the most common symptoms that Chiari brings suck as headaches, fatigue, dizziness, I also experience other symptoms.When someone sees me, they tell me that it looks like I am having a seizure because I have experience some of those symptoms as well. However, when I have been through MRIS Catscans, EEG,  the doctors tell  me that I do not have seizures due to the fact that I am conscience this whole time. While going through this, I can feel things in the back of my head disconnect from each other and feel it independently. Not sure if they are neurons or nerves? No one who I have tried to explain this to can help me because they have never felt it. Some other symptoms include detatched emotions such as laughter and crying where I can be laughing and then switch to crying for no reason because I am not laughing at something funny or crying because I'm sad just happens. I have no verbal communication as I am going through this but I am aware of everything happening around me and sometimes I am able to write. Recently, I noticed my physical body becoming fatigue each day where I do not have energy anymore. I am able to do one little task and then be done for the day because I have no energy left in me. If anyone could relate to this or can help in any way, that will be greatly appreciated! Please help! Any suggestions about ways to cope with Chiari or what I can do about school or just anything at all it will be great. I need someone who understands me!

NicolePritch · Answer

I have chiari malformation and had the surgery just about 3 years ago now. During this time, I would just start tearing up and before I knew it, I had a waterfall of tears streaming down my face. The other day was the worst. I woke up, had my coffee and joined my husband on the front porch. I was dancing and just having an incredibly good morning. Not even 30-45 minutes after my dancing around like a goofball, I began to cry. I could not stop it. I told my husband that I didnt want to cry. I wasn't sad or anything. No matter how hard I'd try, the tears just kept coming well into the evening hours. So now, I've been crying for hours, non stop, doing everything I could to stop them but the decided that it was their day. Through the tears, I kept telling my husband, 'I dont want to cry but I can't stop it' I apologized to him what seemed like a million times. All I remember saying is, 'I dont want to be like this! I couldn't understand why the tears would not stop. This continued well into the night. By this time, my eyes and face are so puffy from crying, what essentially became an all day ordeal! I can feel it coming on. Like now, I know at some point I'm going to start crying and I have absolutely no reason to shed so many tears over what really is the unknown. Has Chiari been known to cause PBA episodes? Are the two affiliated? Please help. I dont want to cry anymore.

Jennifwe223 · Answer

Hi, I have spoke with all of my professors about Chiari and they have had the chance to see what I go through first hand because I have had an episode in almost all of my classes. I am just taking two classes this semester and then finish up in May. My teachers are very good this semester and are working with me in every way that can! However, I was told that I cannot go back on campus until I get documentation for the school saying it is safe for me to attend school which is annoying but I can still participate in their classes from home so I guess that works but I do like attending school and sitting in class even if it is boring! In two weeks possibly after my appointment I can return which I am looking forward to depending what the neurologist says

Jennifwe223 · Answer

Yes I have got answers from this forum. I can't wait for my neuorlogist appt in 11 days! I dont know what to expect from it because I know he won't be able to cure me and make all these symptoms go away! I'm excited to finally go to one who understands Chiari

Elisaandbucky · Answer

Jennifer, 

Good idea to ask the professor if you can take the exam at home/on line. That would certainly take care of the worry you have over your health on the day of the exam. My thought is that it would be best to mention this early in the semester, so you have time to demonstrate that you are a serious and conscientious student.

harboy · Answer

Hi there? I am thinking about you and hoping you got some answers at the very least from reading this forum.

My best wishes,
cindy

selmaS · Answer

I will PM it to you not sure why it was ***'d out....ugh,....

Jennifwe223 · Answer

Can you send me that link again please it was not working because its www.***** idk...I was checked for acid reflux but it turned out that I do not have that.

selmaS · Answer

Here is a great POTS video....

http://www.************/l.php?u=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3D8UPMYNkm6Bc%26feature%3Dyoutu.be&h=XAQFl8VRr

 I have always craved salt too, but was not DX'd with POTS....

 You may be having  GI issues and according to the video link above, stomach pains can be POTS related too...but many with Chiari do have GI issues.

 Have you been DX'd with acid reflux or a hiatal hernia?

Jennifwe223 · Answer

I just looked up POTS and that could be a possibility because I do have most of those symptoms. When I want to eat at times and eat things that have salt, it does seem to help in some ways. I did question why I was craving salt but from reading the article it does make sense now.

Jennifwe223 · Answer

What is POTS? Yes I agree knowing and being familiar with other ones will most likely help us. Wow! You are so knowledgeable and helpful I appreciate this a lot because it is deff helping! One question I have for you because I have a list of 30 symptoms. People with Chiari have a loss of appetite at times depending on the person or have problems eating? My eating problem is a little different I think not sure. I get to the point at times where I do not want to eat because immediately after eating I can have an episode or I am in tremendous pain. Yesterday, I think I did well because I only ate very little and mostly drink. I am at a lost because I do eat since I am hungry but then pay the price with extreme pain right after I swallow the food. There was a time where I had a similar situation where I only ate crackers and drank gatorade  for about 3 months because everything else made me in extreme pain including water! I'm thinking about potentially going back to that..I am not sure what to do

selmaS · Answer

I was also reading where those with POTS can also have the issues you mentioned....the thing is there are so many other conditions we can have as well...and knowing which ones we have can help us feel better....

Jennifwe223 · Answer

I read the article and watched the video and it was very interesting to read and to watch a snip clip of these people. I don't think I have this but yeah I do have the hysterically crying one minute and then go to hysterically laughing and the daze or the stare you see in the video. I have noticed that it is starting to get cold outside and when I am cold and get goosebumps I feel that is a trigger for me and the start of having an episode so I try to get warm and keep my body warm as fast as possible. However, when I am going through an episode I experience all heat and my body is on fire! I noticed that weather plays a factor as well like I will be worse before it rains so basically the pressure in the air. I find it unbelievable that someone with Chiari experiences so many different symptoms

Jennifwe223 · Answer

That is very interesting..yes I could possibly have extra time for assignments but not sure if I would be able to complete the assignments after I finish the course. In these two classes there are not many assignments. In my psych class I have a paper and a 3 exams. The paper is based on just interviewing someone 65 or older and writing about their life. My Math class there is homework every week but I am good at completing those assignments each week because I do my homework right when I get home. My one concern is how I am going to complete the exams and do well on them if I am not feeling well in my classes during exam time. I know if I am having an episode it becomes a challenge for me to concentrate and then able to do well on the exams when I really understand and can do on exams if I am with it. Question for you...in this situation would u consider to make exceptions and allow the student to take the exam at home so they are given the opportunity to do well. I went to class today and only lasted an hour and came home and had an episode. I am lucky that I do have my friend in all of my classes to catch me up

Elisaandbucky · Answer

There is another thing to mention that may help you. I am an English professor and last semester a student of mine was struggling with studying and having radiation. She came to me and told me that she was trying her best to keep up. She trusted me with her situation,  and I felt compassionate and let her take an incomplete. At my school, a student must have an A or B average to request extra time after the semester to finish work. She took the final and turned in her final work 2 weeks after the semester ended. I was happy to change her grade from an Incomplete to an A.

Could you approach one of your professors to maybe give you some extra time to complete the course? This can take some of the stress off during times you do not feel well. I hope you can get some understanding from those around you.

Jennifwe223 · Answer

Yes I am studying to get my teachers certificate and I am so close to graduate which I am excited about! When it comes to school that is my main focus because student teaching becomes my job without pay of course and then I go to classes after that. School is the only thing I do when school comes around because I want to do well! My decision is made already I am taking my psychology and Math courses this semester and taking student teaching in the Spring. I am hoping that by the Spring I will have the energy to do be in a classroom because that is the only thing I have left to complete! Trying to work things out with my school and its a longer process than I imagine because everyone keeps sending me to someone else but I am getting there. I have noticed that there are supportive and caring people on this site that are willing to share their stories and help each other which I love because I finally have people that understand me! I should have came apart of this sooner but I am glad that I have it now when I am at my weakest. Yesterday was actually a good day and had energy. Today is an okay day,not the greatest but took it easy and going to class soon!  I will deffinitely keep you and everyone updated with everything as I find out more information with school and when I go to the doctors. Please if you have additional questions or want to talk don't hesistate to ask I like to help people any way I can!

selmaS · Answer

Please look at this link and see if any of these issues line up with what you are describing.

 http://www.cbsnews.com/news/newly-diagnosed-brain-disease-may-be-misdiagnosed-as-psychological-disorder/

Elisaandbucky · Answer

Hi Jennifer,
Are you studying to get you teacher's certificate? Selma is right on when she gave the wisdom to study and concentrate on your degree. Maybe let go of some of your other activities (if possible) to be able to use your energy more efficiently to cover your school responsibilities. You are wise in contemplating taking 2 courses now and 2 courses in the Spring semester. Then, is it possible to delay student teaching until the spring also? 

Please be comforted to know there are caring and supportive people here that you can reach out to when you have the most difficult days. Also know that Selma has great experience in knowing about some of the symptoms that are more scary (like a disruption in your breathing). You need to get this breathing issue considered immediately. Also, please keep us current with some of your decisions and questions.

selmaS · Answer

If you are stop breathing it is IMPORTANT that you tell the Chiari specialist asap...breathing issues like that are one reason to push hard and fast to get in sooner....

 To each of us the sensation may be described differently...and much of the reason I had no idea what the Drs considered a symptom and what I was describing....listen to what their symptoms for Chiari are, and then break them down to see if what you are experiencing  fits one of the symptoms...even if the words you choose to describe it are different....

 The stop breathing could indicate a stoppage of CSF flow...as I understand it when CSF flow stops so do all the signals to the brain and all our  organs as to how and when to breathe, our heart to beat...our legs to hold us up etc...so we can have a fall , these are called drop attacks and usually the amount of time that the CSF  flow is stopped is short a few seconds and goes right back, but it takes us longer to regain focus and the ability to move and talk and think clearly....

 But the breathing issue is not a good one, so do make sure you are tested for sleep apnea...as you do not want to have this happen while sleeping....

 Look into NovaSom it is a company that works with INS and will come do the studies in your home over a 3 night period...they leave you with the equipment and you are more relaxed for better test results.

Jennifwe223 · Answer

One question I just thought of is that have you heard of people that while having episodes do not breathe for a minute or two because that is what is happening also. I don't know why that happen but I think it could be because everything just stops and i feel better and at peace when that occurs but I do not do that on purpose at all. Then when I begin to breathe again everything is back immediately. What do I do about that is there a way or something that I could do to potentially avoid the not breathing part?

Jennifwe223 · Answer

Thank you so much! This helped a lot knowing that I am not alone and finally found a place where people understand what I am going through! With school I am seeing if I could take 2 classes this semester and 2 next semester because student teaching all day being in a classroom with children right now is a little too much due to fatigue. This is not what I wanted but I think for right now it is the best decision and I will still be able to graduate and walk in May :)I am going to a neurologist one who specializes in Chiari finally at the end of this month and will understand instead (I'm sure many of us know) of going to someone who thinks I am just crazy and believes it's psychologically. How do you explain to others to make them understand how you can feel the nerves disconnecting in the back of your head/brain? Thank you for the support and taking the time out to help, greatly appreciated!

selmaS · Answer

Hi and welcome to the Chiari forum.

 So many of us have had the symptoms come and go and come back worse and Chiari symptoms do cycle....and it is possible to have seizures with Chiari several members have been diagnosed with them...they may not be a typical seizure, but are seizures none the less.....we even had a few develop the seizures post op and get a DX of epilepsy....not saying that is what you have, but the fact the spinal cord and all the nerves are affected we can have short lived issues that resolve and or change to a different symptom....

 Same goes for the changes in emotion with laughing and crying for no apparent reason....there is a condition that some with out Chiari can develop called Pseudobulbar affect which is a medical condition characterized by sudden and uncontrollable episodes of crying or laughing. 

 I know I had a very sensitive time with laughing or crying ..in that I could cry at the drop of a hat or Hallmark commercials....like it was my story or a family member's. ...and at funerals, I was a major mess so much that I avoid going to them anymore...I know I am getting better with those emotions...but I did have surgery....

 The fatigue you describe is so familiar with so many of us, I use to take a few days and rest so I could have enuff energy for a special event and then the few days after to rest up.....

 I am sure many can and will relate to your post.....I know you have a few months to go for school and you may want to graduate b4 you think about the possible need for surgery, but it may take that amount of time to get in and have more testing done....

 Use your time to do the most important tasks...study, go to school etc...and put other things on hold for now....
 But do research Chiari specialists and get more testing so that once  you graduate you can get treatment so you can move on with your degree.....

Jennifwe223 · Answer

Hi Cindy, I appreciate someone getting back to me because I am new to this site too. I actually ran into it by accident but figured I would tell my story and see what I get because I am getting worse. In the beginning of my journey, it was not as bad and very tolerable. I do take vitamins which seem to help a little and see an acupuncture which also helps. He does cranial sacrum therapy so maybe that could help your daughter. Not sure of your daughter story but from other people posts I see that many people have different symptoms they experience. I find meditations seem to work when I am in tremendous pain at night and can't sleep. My best advice for you is to be very supportive and keep trying different techniques that could help her! Thank you and wish the best for your daughter and yourself through this journey hope you come across everything you need for her through here. I am hopeful that someone will be able to help me on here! Good luck!

harboy · Answer

Hi Jennifer,my name is Cindy. My daughter is newly diagnosed and I am new to the site.  I have learned so much by reading old posts.  I took and am still taking a lot of notes.
There are very kind and helpful people here and will be able to share their experiences.
I wish you the very best!
Warm thought,
Cindy