Brain fog

So it occurred to me today that I talk a lot about brain fog and the medication I take for it, but I never really explained what it is. Brain fog is different for everyone, but in general it is just what it sounds like: foggy brain! For me this means that I have to work much harder to process information.

I do not take my medication that I take for brain fog on the weekends because it causes some gastrointestinal side effects, so my stomach needs a break and I don't need my brain on the weekends anyways! I went out with some friends the other night to a pizza place. I didn't even think of taking my medication because it is not like I had school or work that I needed my brain to be clear for. Well I realized I should have taken it! The main issue of brain fog that I noticed was that I had a very difficult time following the conversation because of how many people were talking. If only one person was talking I was just fine, but when multiple people were talking all at once I just could not process what was going on. Another issue I have with brain fog is word recall. I know what I want to say, but cannot come up with the word. For instance, I wanted to say the word "magnet" but could not come up with the right word. I instead made a rectangle with my hands and said "you know the sticky thingy for the fridge with pictures on it". Thankfully my husband is incredibly understanding, but it is really frustrating! Another example was I was trying to come up with the word "rabbit". I have 4 rabbits so this is a familiar word to me, but instead I said "you know... the little furry, jumpy creatures". I know what I want to say, but it just won't work for me!

Another symptom of brain fog is that I will walk to another room to do something, the kitchen for example, and stand in the middle of the kitchen completely unable to remember why I am there. Sometimes if I stand there long enough I will remember, and other times I don't remember at all. Another way that brain fog affects me is when I am reading. I will read the same line or paragraph over and over and over again without realizing it or retaining any of the information. Sometimes it does not matter how hard I try I simply cannot gain information out of what I am reading. For those of you who know me you know I LOVE to read, so this is extremely frustrating!

No one is 100% sure why this occurs for me and other people with POTS, but the most likely explanation is that blood pools in my legs when I am sitting or standing. Since this blood is stuck down where it is not supposed to be it is not getting to my brain. My brain is then allocating all of the blood and oxygen that it does have to essential functions like breathing and other involuntary functions. It is not enough of a deficit to be dangerous to me, but this lack of blood going to my brain is likely why the brain fog occurs. My brain simply cannot maintain all of the necessary bodily functions AND do things like come up with words or remember things at the same time.

I hope this helps at least a little bit to understand what brain fog is and how it effects me :)

Long overdue update!!!

Hi all! It has been a long time since I have posted an update. Thankfully this is a good thing! I have gone back to work and then last week started school. I work 5 days a week for the first time ever! Only about 15 hours or so a week, but I am very happy I can physically do this. I am also taking a full load of classes, so that is very exciting as well!

Physically I have been doing very well. My neck doesn't hurt hardly at all anymore, my range of motion has come back significantly, my neck stiffness is nearly gone, and my headaches have improved drastically! Car rides do not cause me the same amount of pain that they used to. Every bump is not excruciating any longer and I don't need to wear my hard collar at all anymore! My swallowing/aspirations issues have COMPLETELY dissipated as well :) My incision looks good and isn't that itchy any more. Here is a photo of my incision at just about 1 month post op. My surgeon said it looks good. There are a couple of white spots on it which are actually stitches that are supposed to dissolve. With EDS (connective tissue disorder) my body rejects the stitches before they have a chance to dissolve like they are supposed to. It doesn't hurt and I expected it to happen because it happened last time as well. We just have to watch and make sure that I do not develop an infection from any of the rejected stitches.

 

I am still very low on energy. They say it takes about an average of 2-2.5 weeks for every hour you were under anesthesia for the toxins to get out of your body. Since I was under for over six hours it could still be quite a while before I start feeling better again. My thyroid levels being low are also probably causing some fatigue.

I have started to learn to access my port! It is very difficult to get the needle in the right spot. I can prep everything and am confident I know the correct procedure, but I am struggling to get the needle in the correct spot. It will take practice, but I am getting there at least! Hopefully I'll get the hang of it shortly, but it is not easy to do because it is on my upper right chest and I am right handed. Also trying to do it in a mirror makes it difficult as well. I had gotten some little alcohol filled caps that I put on the end of my port while I was in the hospital before and you might remember that I was trying to get some for at home because they reduce the risk of infection. Well we called the company that makes them (Curos they are called) and they sent us a "sample". Well this sample is a hospital sized sample and contains 250 caps in it! This is well over a year supply for me so that was exciting! :)

My neurologist also called me in a prescription for a nausea medication. I have been having really bad nausea and haven't found anything to control it besides this medication so I was extremely grateful for that!

I now have my new insurance, but we are still trying to sort stuff out so I have not been able to schedule any appointments that I need to yet :( Hopefully it will all get worked out very soon!

Right now the only appointment I have scheduled is with my autonomic neurologist on February 13. This is just a follow up/check up appointment, so I don't anticipate anything exciting happening. I will update once we get my insurance settled and I am able to schedule the appointments that I need to! I'll try not to let so long go between updates as well :) Sorry for the delay!

No news is good news!

Hey all, I really do not have much to update on right now. I am still having very little pain and am recovering very well. I am getting around easier and am starting to get more energy. Car rides are still painful for me, but I made it over an hour to my parents house without my neck brace on! I was supposed to go back to work tomorrow, but I work at a school and they are closed due to the frigid temperatures (-50 Fahrenheit with the wind chills!!) so I have one more day to rest up. I am ready to go back to work! I love working with the kids and seeing my friends at work.

I have not yet made my appointment with an endocrinologist like I need to because I am currently undergoing a change of insurance. Hopefully within the next couple of weeks this will take effect. It looks like my neurologist is covered, who I will need to see again in February, but we are not sure yet about my other specialists. I need to find out if my neurosurgeon, ear-nose-throat, orthopedic surgeon and the geneticist I am on the wait list for are covered by this new insurance. It will be difficult to switch over insurances, but in the long run will save my family a significant amount of money without sacrificing my care.

I got new serum for my allergy shots a couple of months back, but just started using the new vial right before we left for New York. For the first few weeks I need to do a shot every week instead of every other week like I normally do. I have one more shot to do on Thursday and then I get to go back to every other week! I struggle to remember to do my shot, so it will be nice to get back to my usual schedule!

Right now we are battling my current insurance over a couple of things. For some reason they do not want to cover the compression stockings I got a couple of months ago. They are claiming that they do not cover them even though we called the insurance company multiple times to make sure that they were covered. We need to write a letter to the insurance company in order to appeal this decision. Secondly, one of my medications requires pre-authorization from my insurance now. We are not sure exactly why, but I now need to get my neurologist to fax over some paperwork to my insurance in order to get the prescription covered by insurance. Finally, during my craniocervical fusion an outside company was apparently used to monitor my sensory and motor functions. This is fine except for my insurance is now saying that this is an out of network expense. This service was nearly $10,000 though.... The insurance company is currently reviewing this, so we will not have any information for the next 30 days or so on this. Please pray that this goes over smoothly and everything works out well!