Headaches & MS

reasons

I have been battling horrible headaches with very little relief for days now, which is why I have not been posting anything. I know many people at some point in their lives have experienced a headache of some type with different severity levels. Nothing had been helping my headaches so I decided to look up the correlation between MS and headaches. I found a great article written by PhD Stachowiach, Julie “Headaches as a Symptom of Multiple Sclerosis”, written June 19, 2017. Those individuals that live with MS seem to be prone to the three types of headaches: migraines, cluster headaches and tension headaches. The following is the website where I found this article, https://www.verywell.com/headaches-as-a-symptom-of-multiple-sclerosis-2440798.

Three Known Types of Headaches:

  1. Migraines:
  • These can last anywhere from 4-72 hours
  • Can come along with blurry or distorted vision, followed by fatigue and anxiety
  • May feel a throbbing on one or both sides of the head
  • Sensitivity to light or sound
  • Nausea, vomiting or loss of appetiteheadaches 1
  1. Cluster Headaches:
  • Able to last 15 minutes to 3 hours long
  • Severe burning sensation on one side of the nose or deep in one eye
  • Occurs only on one side of the face
  • Tends to occur at same time every day, normally for a period of several weeks.
  1. Tension Headaches:
  • Most common in the general population of individuals
  • Comes on gradually and may last 30 minutes to all day or even up to a solid week
  • Feels like a constant band-like aching or squeezing sensation either right over the eyebrows or encircling the head
  • Able to occur at any time of day but typically the latter part of the day

There is an association between brain-stem lesions and an increased number of migraines and tension headaches. However, there is no link between the location or number of lesions and headaches of any type. There have been reports that headaches or migraines could be a symptom of an acute MS relapse, which I really hope is not what I am dealing with. Hopefully the week-long headache will soon end and I can enjoy the weekend before Christmas. Considering absolutely nothing has helped this headache, do y’all experience headaches and if so what do you do to treat them?

I hope you had a great week and are looking forward to your weekend! Remember, stay positive and do not stress over anything with preparing for Christmas, everything will work out as perfect as it can. The ability to be with loved ones is all that really matters this time of year! Take care and much love y’all!

Love 2

Always, Alyssa

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Beautiful Friday Morning!

Good Morning FridayHappy Friday Morning Y’all! I do not normally do posts in the morning, because I am normally at work. I am off work today partially to rest because of what appears to be a flare up, and partially because it is the day before my birthday! At first, I was planning to go spend the day with my mother to celebrate my birthday, but with all that is going on things needed to change some. With the undesired birthday present of pain and possible flare up, it is best for me to get as much rest as possible. So, I am staying home to rest today!

Considering tomorrow is my birthday and Sunday is my six-year wedding anniversary, I really want to feel up to pare to be able to enjoy those two days! As frustrating as it is, I do know that during this time rest is best. I am not very good at doing nothing and Hoperesting, but I am going to continue to give it my best shot! I did take two and a half days off from work so my body could heal, plus I have the weekend so hopefully by Monday, I will be as good as new! One can only hope that this will work!

I did not make my normal daily post last night because my husband and I went to see Jack Johnson in concert! It took a lot Music makes the painof effort for me to get up the strength to go, but I am really glad we did. It was a fantastic show and did not require too much standing or walking. We were able to park close because of the handicap parking and we were able to sit as much as we wanted. I sat down for the majority of this show, but it was fine! Jack Johnson has a very soothing voice and this was such a fantastic show! For us to be able to go to this show was thanks to my wonderful Father in Law! To me, music has a healing almost magical power!

Now, considering I did miss my daily post yesterday, I am planning to do another post later to make up for missed times! As y’all know, I wanted to do one post a day for at least a month! This might seem challenging when one deals with a lot of pain, but it is a huge stress reliever for me and I enjoy this! I have enjoyed all the connections I have made, which has resulted in great conversations! I am going to do my very best to try to rest today and maybe even takes a few naps! I will let you know later how and if this has helped what I am dealing with! I hope y’all have a good day today!! Take care!

Love 2

Always, Alyssa

Ready for change!

stop stress 2How do you not stress, when it is all you have ever done in your life? I think stress is just part of who I am. Today, I received a call saying someone scheduled a MRI for me. Wasn’t that nice of them? No one even bothered to call me to ask when a good time would be for me. Instead, I guess because it was a STAT MRI, they scheduled it on Saturday, which is my birthday! Not only did someone take it upon themselves to schedule this appointment, they scheduled it about an hour away from where I live. Why would anyone with any common sense do such a thing? These doctors and nurse practitioners keep saying I need to control my stress, but then make stupid assumptions about when I can make it to the MRI.  Of course I called the scheduling department and rescheduled the MRI closer to my  house and not on my birthday!

The nurse practitioner still keeps saying that this is a pseudo relapse, simply because there really are not any new symptoms. But, she has not listened to a thing I have said. Plus, it can still be a normal relapse without new symptoms one of the lesions that was dormant, could be active now. Of course I have had these issues with pain before, but now it is way more intense. There could be additional lesions that are causing increased pain. 

I had shared with the nurse that I think this is due to stress. So her response was, you need to stop stressing. Sounds so easy, right? The more I hear people tell me to control my stress, the more stressed I get! stress meterI did ask her today what else I can do to help these issues. She said that I should rest as much as possible and it would be a smart idea to stay out of work a few days to recuperate from these flare up like symptoms.  I am already off on Friday, so that would just mean missing tomorrow as well, which will not be a huge issue. We do have tickets to see Jack Johnson tomorrow evening, and I am pretty excited about this! If when I wake up tomorrow morning I am still dealing with this pain, I will stay home and rest so that I will feel okay to enjoy this show!

Time OutI really am frustrated with the healthcare system. It seems like you are not able to get straight answers, ever! All doctors want to do is prescribe something new, that will probably cause more issues. Who tell hell wants to be dealing with a pseudo flare up or a flare up right before their birthday and anniversary? If this was some kind of birthday present, how do I return or exchange it? I do not know of anyone that is alive that does not have some type of stress come into their lives at some point. How do you live life and not experience stress? Life dishes out stress at random times for a number of different reasons. If only there was a way to escape to some tropical island, without cell service and great weather, that would be my perfect escape!

I guess all I can do right now is rest, relax and just hope for the best situation possible. Those of you that have Multiple Sclerosis, know flare ups come and go. I have to believepostivethinking that none of this is going to be permanent and life can and will get back to normal. Life throws us curve balls and we just need to do what we can to keep moving forward. No one ever said life was easy, we all have struggles but how we handle these struggles determines how our future plays out. No matter how it appears on the outside, none of us are dealt an easy hand in life. We need to do our best to stay positive and avoid negative as much as humanly possible. 

I hope y’all have a good evening! Please leave a comment below and I will respond to you just as quickly as I can! I have enjoyed all the connections I have made with so many of you! I sincerely appreciate all of your kindness and support! Take care and stay as strong as possible!

Love 2

Always, Alyssa

Fatigue: Another symptom of MS or just part of life?

sleepyAnother weekend has come and gone by way too fast! Sunday comes up on us so quickly and it is time to prepare for yet another long work week. I did my best this weekend to relax and do what I was told when at my doctor’s office last week to help the Pseudo Relapse  come to an end. Unfortunately, I am still experiencing an incredible amount of pain. I guess it is going to take a little longer than one weekend to get back to normal. Even though I am still struggling, I am very hopeful that my new treatment plan will help get all my pain under control.

kitten_sleep_by_jaymilinaI got to thinking about something over the weekend. I have always been the type of person to get up early, even on the weekends when I can sleep in. I thought it was because all week-long I have to get up early for work so maybe my mind and body is just trained to always get up early. Who knows!? I have noticed no matter what day of the week it is, I do always feel much better earlier in the day and feel so fatigued in the afternoon. It seems that everyday I feel fatigue setting in around 1 or 2 pm. Of course Monday through Friday I do not get out of work until 5:00 pm, so the last few hours of my day are brutal. I never make any plans after work so that I am able to just go straight home and rest. Of course I was curious to find out if this was something to do with the Multiple Sclerosis or just my body chemistry. Come to find out after reading this article “Fatigue and Multiple Sclerosis”, I found that 75-95% of MS patients do experience a lot of fatigue.The article https://my.clevelandclinic.org/health/articles/fatigue-in-multiple-sclerosis  was very interesting to me. Please let me know if you find this at all helpful!

sleepy kittyI know fatigue doesn’t just affect those of us with MS and everyone has different reasons for it. But for those of you  that battle MS, how many of you experience fatigue on a daily basis? How do you combat this issue? I would love to hear anything that has maybe helped you in any way. It is obviously a little frustrating when I am at work and just want to close my eyes around lunch time. As always your comments are very appreciated. I love hearing from all of you and will respond to you as soon as I can. Your continued support is valuable to me as well! Being able to connect with you is so helpful to me as I hope it is helpful to you as well. I hope you have a great evening!

Hope for cure

 

Always, Alyssa

Pain update and feeling hopeful!!

hope 2Happy Friday Eve! As y’all know I have been battling increased pain for about two weeks now! As you probably know from your own experience, dealing with pain is extremely frustrating! I was terrified to tell my doctor about it because I was thinking it was a flare up. I finally shared my issues with my doctor and of course she wanted to see me so she could determine what we needed to do. I scheduled an appointment with her Nurse Practitioner (NP) because she was of course booked. 

I was of course nervous about the appointment because I was thinking worse case scenario. I had my husband come with me to my appointment yesterday and was actually pleasantly surprised that I was not having a relapse from the Multiple Sclerosis! The NP told me I was experiencing a Pseudo Relapse. In the 16 years I have battled MS, I have never heard of such a thing. The way she explained it to us made a lot of sense and made me feel so much better about my situation. Pseudo Relapses can occur because of infection, heat and or stress but will go away without having to deal with steroids. It is common for Pseudo Relapses to have all old symptoms from previous relapses to come back at the same time and for it to feel like you are having a typical flare up when in fact you aren’t. When you have a relapse from MS you experience new symptoms and everything I was dealing with I had been through before. I was very relived by her diagnosis and obviously feel better about the situation and I am hopeful that my pain will get better sooner than later. Im in the fight of my life

During this appointment I also told the NP that I had discontinued the Gilenya about a week and a half ago. I explained to her that I felt that I had been on Gilenya for too long and my body needed a break. She told me I of course need to have a plan to what I am going to switch to. I made the decision to switch to Tecfidera. She explained that Tecfidera isn’t as strong as Gilenya and might not be as effective so I need to be prepared. I am going to try this new medication in conjunction with managing my stress better with hopes it will work. I will not be starting Tecfidera for a few more weeks as I have to wait for insurance to approve it and for my blood count to stabilize. 

These past few weeks have been very difficult and extremely frustrating as I could not figure out why I was in so much pain and why it would not let up. I have been sharing this struggle with all of you and received some really great advice. I am so happy to share this great news with all of you that it doesn’t appear that my MS is progressing but remaining fairly stable. I have known that heat and stress can cause issues for MS but never did I know anything about Pseudo Relapse. You know I always end my posts with a question because I really enjoy and appreciate your feedback. Have any of you heard of Pseudo Relapses before now?f505582bc2e45648307fd6a35837f4b0--multiple-sclerosis-awareness-flip-flop

I will of course keep you all updated on how this issue improves as I do believe it will. Plus, I will be waiting for the insurance to approve the new medication and my blood work to stabilize and will keep you updated through this process. Y’all know it takes insurance a while to approve medications, especially the expensive medications needed for MS. Time will tell and I will stay positive and strong!

Hope for cure

 

Always, Alyssa

 

 

 

Still fighting pain, but holding onto hope!

hope 2Happy Monday Y’a’ll! I am still currently battling the pain I have been dealing with for about a week now. For some reason it isn’t letting up. I have been resting and trying to not dwell on it,  but it is still hanging around!  

So what I am dealing with is spasticity in my legs and I guess that is what is going on with my neck and shoulders. I have honestly dealt with leg pain since I was first diagnosed, but this just seems like so more. All doctors will say that heat is bad for MS patients but using a heating pad is all that alleviates my leg pain. I guess I am just unusual. Does a heating pad actually help any of y’a’ll that deal with MS pain?hope 1

I am wondering if it is possible that this is something to do with the weather. I always try to find a common denominator to when my pain seems to  be elevated. Do any of you believe that the weather, even when there isn’t a huge change, impacts MS? I of course already know extreme heat or cold can cause issues to worsen but the weather has been kind of the same here, hot and humid. Although today it is relatively humid and dreary.

As always I want to ask a question to all of you. Whether you battle MS, another chronic disease or  none of the above, what have you noticed that causes pain to elevate or even headaches to be more frequent? I always appreciate your comments and I do respond!

Always, AlyssaHope for cure

Crazy Summer Weather

fight ms butterflyWelcome back to my blog! 

I can not speak for everyone but when I go outside and the temperature is 93 degrees with a humidity level of 60%, I can barely get a breath in. A short from my office door to my car feels almost like I have run a marathon. Then getting in the car that has been sitting in the sun all day long feels like a sauna. All that together makes me feel very faint. What I have been trying to do when I get into the hot car is, roll the windows down and turn the a/c on high. I do not try to drive until the car has cooled down because we all know that when the a/c first comes on it blows more hot air which of course makes everything that much worse! After the car is cooler and there aren’t any signs of dizziness it is safe to drive home! I have heard of cooling vests and cooling towels that can be used during this time of year but I have not tried any of them yet. I will share that information in the future after I do try these helpful items. 

Of course I do understand that humidity affects everyone in different ways. But I was curious if humidity causes additional issues for those battling MS. After reading an article on Web MD’s website I have found that it does. According to Web MD, heat or high humidity can make people with Multiple Sclerosis experience a temporary worsening of their symptoms. This occurs because heat causes nerves, whose myelin covering has been destroyed from MS, to conduct electrical signals even less efficiently. For anyone that is interested in reading more about this the full article can be found at, www.webmd.com/multiple-sclerosis/guide/impact-temperature.  Also, for anyone that is unsure of what myelin is, it is a fatty substance that surrounds the axon (long threadlike part of a nerve cell along which impulses are conducted from the cell body to other cells) of nerve cells, forming an electrically insulating layer. Myelin is really for the proper functioning of the nervous system. 

When the temperatures and humidity are as high as they have been it seems like there is no escaping it. This insanely hot weather and humidity has actually been causing me a lot of breathing problems and pain issues even when I am inside with the air conditioner. Until summer is over the best thing to do is to stay inside and try to relax!

Thank you for visiting my blog and reading some information that I have found very interesting. If you know someone that has been battling MS for a long time or someone that has been recently diagnosed, please share this site with them. My main goal is to help those suffering and learn from their experiences as well. 

Best Wishes, Alyssa

Hope for cure