Fighting Multiple Sclerosis

Thursday, December 23, 2010

Headaches! How many of us deal with headaches and wonder why?

So how many of you out there deal with headaches just to be told that Multiple Sclerosis does not cause headaces or any pain for that matter. Well I myself suffer from severe cluster muscle tension migraines and have for years. I don't know about you but every doctor I have been to has told me there is nothing wrong that would be causing these so called "headaches". No matter that I have had emergency brain surgery for this and have a medical record that looks like it's for entire town. Well I really got tired of being told this nonsence and desided to do my own investigating and this is some of what I found.

Everybody has a headache occasionally; however, people with multiple sclerosis (MS) are much more prone to migraine-like or cluster headaches than people in the general population. While the cause of most headaches is a mystery, some headaches in people with MS can be caused by lesions, depression or specific medications that they are taking. You should see your doctor for: Any type of unusual headache, a headache that keeps recurring, or one that lasts for a long time.

What Do MS-Related Headaches Feel Like?
Headaches that are directly associated with MS have been described as:

These seem to be more common in people with relapsing-remitting MS. They can be described as:

•Often preceded by an aura (blurry or distorted vision signaling that a headache is about to begin) or prodrome symptoms (including fatigue, hunger or anxiety)
•Throbbing on one or both sides of the head
•Can be accompanied by sensitivity to light or sound
•Typically accompanied by nausea, vomiting or loss of appetite
•Residual pain and discomfort often follow headaches
•Lasting from 4 to 12 hours

Cluster headaches have the following characteristics:

•May begin as a severe burning or stinging sensation on one side of the nose or deep in one eye
•Pain peaks rapidly
•Feels like electric shocks or “explosions” in or behind the eye
•Only on one side of the face
•Comes on without warning (unlike many migraines)
•Tend to recur at the same time every day (often soon after falling asleep), usually for a period of several weeks
•Can cause eye to water, nose to run or eyelid to droop
•Pain completely resolves after headache (until next headache)
•Lasting from 15 minutes to 3 hours

These headaches are the most common in the general population, and can be described as follows:

•Rarely causing severe pain, more often moderate or mild
•Constant, band-like aching or squeezing sensation
•Pain is either right over the eyebrows or encircling the head
•Comes on gradually
•Can happen any part of the day, but usually occurs in the latter part of the day
•Lasting from 30 minutes to all day
How Common Are Headaches in People with MS?
Up to 58 percent of people with MS experience chronic or recurring headaches, compared to 16.5 percent of the general population. Of course, almost everyone (over 90 percent of people, MS or not) gets occasional headaches.
What Causes Headaches in People with MS?
Many different things can cause headaches in people with MS, including:
Lesions: A study looking at 277 MS patients suggested an association between number of midbrain lesions and migraine headaches. Interestingly, cluster headaches in people with MS have also been shown to be linked with lesions in this area of the brain, where the trigeminal nerve, which is also called the fifth cranial nerve, originates. (The 12 cranial nerves emerge directly from the brain instead of from the spinal cord.) This is the nerve that is involved in the other “most painful MS symptom” – trigeminal neuralgia or tic doloureux. However, most headaches are not associated with MRI findings.

Optic Neuritis: Headaches are also common during episodes of optic neuritis. These headaches are usually only on one side and worsen when then eyes are moved.

Depression: Depression, a very common MS symptom, has also been associated with headaches in people with MS. Depression and migraine headaches are both linked to low serotonin levels.

Medication Side Effects: The interferon-based disease modifying therapies (Rebif, Betaseron and Avonex) can cause headaches or make pre-existing headaches worse. Provigil, Symmetrel and other drugs used for fatigue also have headaches as a primary side effect.

How Severe Can Headaches Get?
Headaches can be extremely disabling. Migraine headaches can be incredibly painful, and the accompanying light and sound sensitivity can lead to people withdrawing to a quiet, dark space for hours at a time. Even when the migraine has passed, people are often left with residual symptoms (called the postdome phase), which include fatigue, irritability, problems concentrating and dizziness.
Cluster headaches are often described by people as the worst pain they could ever imagine, akin to “a burning ice pick being plunged into their eye.” The pain from cluster headaches causes many people to fall on the floor, pull at their hair, bang their heads on the wall, rock back and forth, scream and weep. Although the pain from cluster headaches resolves (no lingering effect like with migraines), people often feel completely exhausted after each headache. Just as disabling as the headaches is the fear and dread that people feel, knowing there is a good chance that another one is coming within hours or the next day. This anxiety can interfere with daily activities or social contact, as well as lead to insomnia, as people avoid falling asleep (most cluster headaches occur at night).

Tuesday, December 21, 2010

Thankful for everything but so done with it all...

Maybe it's just me but I am so done with everything. I am tired of feeling like I am being used. I have been sick since a very young age and know first hand just how much people can take someone for granted. Except for a select few in my life along with my online MS friends I am so tired of people and there disregard for human life.

Please don't get me wrong I am so very grateful for everything I have in life and I am not talking about materialistic things. I love the people in my life who are true friends. The people who not only call me to talk about there times in life but also the ones who stop and take a minute to ask about me and how life is going for myself. I guess why this is so important to me is because of my illnesses I have learned what is really important in life. I have found so many people are only out there for themselves. What do they get out of it and why should they be there. For example I can have a "friend" call me and need for me to listen and I love listening and helping people out. Those same "friends" who say that if I ever need anything to not hesitate to call them seem to not mean it. I can call them and it seems like within seconds of me talking I get the uh huh yelp yelp hmm huh. It is like they are hearing nothing but there television. So I wonder why do you say to call if you ever need to talk but only listen when it will benefit them?

I just have to stop and wonder what has happened to man kind and there compassion. I would never think of doing such things to someone. Sometimes I just feel like stop talking and see who will really notice. So I have asked myself is it me pushing people away but then I think back as far as I can remember and seems like I have been dealing with this ignorance since I first became sick at a very young age of around 9 or so. I know that everybody in life to some extent deal with this and that is why I want to talk about it.

If you stop and think about it look at all these young children killing themselves b/c other kids are bulling them. What is happening to man kind. Why are people becoming so mean? It absolutely breaks my heart at how people treat one another. Why are we treating one another with such hatred? Are we not supposed to love thy neighbor and to forgive. I am a very strong believer in the fact that it is not mans job to judge each other. I know there isn't a single person on earth that like to be treated ugly so why do they treat others ugly? What happened to the good saying "treat others the way you would want to be treated?

Sorry I have babbled on with this subject but it is close to my heart and I just needed to get it out there. Are you seeing or dealing with this type of treatment. Please leave me a line or two of your thoughts.

God Bless All and Always remember you have a friend in me and you are LOVED...

Monday, December 20, 2010

Dealing with our Emotions




What it's like having MS ( Multiple Sclerosis)

Sunday, December 19, 2010

Suffering from Insomnia with MS

This is something I found after hearing that so many of us with Multiple Sclerosis suffer from insomnia. I don't know about you but this can be one of the most aggravating things to deal with. You are so tired all day looking forward to going to bed to find that you can't sleep.... Here is some information I found that I hope with maybe help someone and to give us all some insight into why this happens to us.

"As most of you with multiple sclerosis (MS) know first-hand, the fatigue that comes with MS has a very special, “crushing” quality to it, making even simple endeavors seem huge. While there are many reasons for this fatigue, poor sleep quality and quantity make fatigue (and other symptoms) much worse.

By improving sleep habits and addressing the causes of poor sleep, we can do a great deal to increase our overall energy levels. In a recent study of 60 patients with MS, about 50 percent reported some form of sleep disturbance or insomnia.

People living with MS experience several different kinds of insomnia, such as:

* Initial Insomnia: Difficulty falling asleep at night.
* Terminal Insomnia: Waking up too early.

Causes of MS-Related Insomnia
There are a variety of reasons why people with MS have difficulty falling asleep and staying asleep. These include:

* Initial Insomnia Causes: Anxiety and/or pain may make it difficult to fall asleep. Some side effects of medication can also cause you to have difficulty falling asleep.
* Middle Insomnia Causes: Ironically, people with higher levels of daytime fatigue tend to experience middle insomnia, but the causal relationship is unclear. Middle insomnia is also caused by nocturia (the urge to urinate frequently at night), a very common form of bladder dysfunction. Muscle spasms and pain can also wake a person in the middle of the night.
* Terminal Insomnia: The causes of terminal insomnia in MS patients are not well-understood, though lack of exposure to daylight can contribute to not sleeping long enough.

Getting a Good Night’s Sleep
You can improve your chances of getting a good night’s sleep by establishing good daily sleep habits, which include:

* Exposure to bright lights during the day
* Avoiding caffeine, alcohol and nicotine in the late afternoon and evening
* Getting daily exercise
* Having a bedtime routine that includes relaxation
* Avoiding reading or watching TV in bed
* Have the same sleep schedule every day, including weekends
* Not lying in bed awake; rather, getting up after 15 minutes of not sleeping"

I have found this to be very insightful as to why we have so many problems with sleep. I would love to hear everybody's stories and thoughts on this subject.


Have a great day everybody. Hope to hear from everybody soon.

Sunday, July 11, 2010

Why do people go against one another who are fighting the same thing

Hello again,

I recently was at!/bydls and this particular article had several negative post. I was in one of those moods were I was not in a negative mood but wanted to be supportive. I felt my heart breaking as I read some of these post so I wanted to reach out a hand or word I guess you would say of my experiences and how they had helped me. I guess I was thinking if I could help one person it would be a good thing.

A few post later I was attacked for some of the things I said. One women was so mad at me because she said "telling someone to get a counselor or go to a pain clinic doesn't help and some of us don't have these luxuries". My comment prier to her saying this was that "I recommend finding a good counselor and pain clinic" I had only recommended it I would never tell someone to get or need to or have to get a counselor. That to me is a decision you have to make on your own and I believe you have to be ready for help before you can ask for it. Her comment about some of us don't have the luxuries really bothered me b/c she just assumed I did. In fact it is just the opposite if it wasn't for state aid I wouldn't be going to any doctors and would still be skipping meals and what ever else so that I could afford my medications.

If you would like to read all of it feel free to I have posted the exact web sight. If you disagree with some of the things I said or feel I was in the wrong please tell me. I am not understanding why me taking the supportive road and not the venting negative road is wrong. Some of the comments really bothered me b/c they were saying things like "God is just stupidity" and I just can't comprehend that. I understand everybody is not like me and I truly believe that you should not push your beliefs on someone else that is a decision they have to make on there own. I am a strong believer that everybody has there own relationship with there own God. I am also a believer that having some form of faith and in my life a prayer circle helps me mentally to gain the strength to get through everyday one day at a time.

I truly want to know peoples thoughts on this. I just don't understand why people with an illness would turn against someone else who also battles the same illnesses. I even had one women say "I do not go through what they do" That really hurt me along with many other emotions like anger. That is when I responded with a venting but yet apologetic post. I couldn't restrain myself. Then I was told "You are a very angry person" I just couldn't win for loosing with my fellow autoimmune disorder family members ( I consider anybody with an autoimmune disorder in a way family ). I don't know why maybe it is my caring and giving personality. My counselor said that I take on a lot of other peoples problems as my own and I want to be almost like a counselor for them. She has explained to me that I can't do that anymore and that I have to take care of myself and not take on other peoples problems as my own.

I understand that I can not take on other peoples problems as my own and I have stopped doing that. I have also learned that peoples insecurities, lack of education, meanness and what ever else they have issues with is not about me and that it is about them. It is about there own insecurities and that I can't take on there problems as being about me. I have realized that it is not about me it is about themselves.

I want everybody to feel free to post your honest opinion and not worry about judgment from me and I hope that no one else will be judgmental but just give there opinion and if you want advise. I love to learn from my mistakes and will be the first to admit when I have done wrong.

Well I guess that is all for now I just needed to get some of this off of my chest. I read it all to my mom and she said she needs to get on there b/c she could really stir up some shart. LMBO that's my mom for ya. God I love my mother and she is truly my best friend and I find the older I get the more I am like her. LOL I wish everybody could have the type of relationship with there parents the way that I have with mine.

Well much love and hugs to all

Thursday, July 8, 2010

Multiple Sclerosis and our battles Autoimmune Disorders: Introducing Myself

Multiple Sclerosis and our battles Autoimmune Disorders: Introducing Myself: "Hello my name is Nickey and I have Primary Progressive Multiple Sclerosis along with many other illnesses. I do NOT let them define me. I h..."

Introducing Myself

Hello my name is Nickey and I have Primary Progressive Multiple Sclerosis along with many other illnesses. I do NOT let them define me. I have a beautiful little 3yr old boy who is my blessing from my dad and God. My spouse and I were told we would never have children. My father passed away suddenly active duty when I was 7 and he used to joke to my mother, wouldn't it be neat to have a little red headed freckle faced boy. Well 14 grand daughters later we found out I was pregnant. There are no boys and there is no red hair jeans on either side of our families. One day I woke up feeling a little different and found out that we were pregnant. Then on April 25th 2007 I gave birth to a beautiful strong healthy little red headed boy. He is the first Grandson. So that is why I consider him my gift from my daddy and made possible by our wonderful God.

My son is my pride and joy so we spend many days just enjoying each others company playing games or maybe just curling up and watching one of his movies as he grabs my hand to put on his head to rub my fingers through his hair or on his tummy to hold him close. Then out of the blue he will turn to me and look me deep in the eyes and give me the biggest hug and kiss with his big puckered up lips and then say "I Love You". I cherish every moment I have with him b/c I know one day I wont be able to do some of the things he needs or wants me to do. For example go to games or maybe when he is 5 or 6 take him out swimming or out to play in the dirt.

I want this to be a place were everybody who is dealing with any type of illness to be able to come and just talk. I encourage care givers to join in also. I have seen first hand how hard a care givers job is. My Rock is my spouse and my caregiver. He is what keeps this family going.

I have never done a blog before but I will say that I think I will enjoy this. There will be times of tears and times of laughter times of screaming and times of thanks for so many blessings.

I will leave with that. Much love, hugs and blessings to all.