Understanding The Medications We Are On

A few weeks ago I received a very personal and touching email from a fellow SPS warrior about the medications we are put on in helping those of us - either positively diagnosed with Stiff Person Syndrome or those like me that neurologists I have seen  are still on the fence about (one says yes, one said no and one is still trying to decide, but is almost certain I have SPS based on clinical presentation the uncertainty comes from my GAD test coming back negative but many have been diagnosed without being GAD positive)  they keep trying different medications and dosages to  help in any way to relieve some of my symptoms.  I also follow closely the open and closed groups on social media that I am able to find regarding SPS, I've read and study all the different medications people are prescribed, which is one of the reasons I am writing this and also in respond to the email I received.

I've  read and seen many people fighting either within the different groups, or at home with their loved ones. They express their frustrations,  up and downs and their moods clearly comes through with what is written or said to others.  I also read many sad posts of people who have given up and lost faith in getting the help they need.  Unfortunately some leave the groups, their families break -up  and others attack others on the support groups which has caused a lot of tension with some groups threatening to shut down.  Long before I was put on many of these medications that others are on;
I in reading the words spoken made me wonder if it has to do with the medications doctor's prescribe to us.  Many are on a combination and some are put on such high dosages that the average person would be in a coma, and I am not trying to be funny. Receiving the email I did made me realize that I am not the only one who felt this way.

As advanced we like to think we are medically wise, sadly to those suffering from chronic conditions that the human body has far outreached the medical field in their "expertise".  Especially for myself and others struggling to get a proper diagnoses of SPS.  I am not only struggling for myself to be heard but also to get the message out to others first and foremost don't give up! But also you need to understand what you are being put on, the side effect and especially when you are put on multiple combinations of these drugs at a time.

Personally speaking some of  medications they have tried and taken me off of, I have been on low dosages, high dosages some medications far more dangerous then others and some are so dangerous to a person's system that once my doctors have realized were not really helping me or making me worse, I  had to be slowly weaned back off them.  Imagine my (and all of our) friends and family who are healthy taking that chance to go on a medication(s) so detrimental to your well-being but being so sick that you are willing to take that risk and maybe you will get a glimpse of how real and life changing this condition is.

The most common medications we are put on, are in the Benzodiazepine family, also medications in the anti-epileptic family and many different types of muscle relaxers. They all have many of the same side effects, the most common are:

• anxiety or agitation
• confusion
• falls and fractures
• fast, pounding, or irregular heartbeat
• hallucinations (seeing or hearing things not there)
• memory loss
• mood or behaviour changes (e.g., aggression, rage, anxiety or excitation)
• fatigue or trouble sleeping and nightmares
• signs of depression (e.g., poor concentration, changes in weight, changes in sleep, decreased interest in activities, thoughts of suicide)
• amnesia or forgetfulness, trouble concertinaing
• dry mouth,  and blurred vision
• swelling of feet and ankles
• appetite changes either weight gain or loss

To quote in part the email I received "The medication I was on at the time was : Gabapantin, Tizanidine , Valium and large amounts of Ativan as needed. I'm not giving out the dosage as it isn't important, what's important to me is to be honest and realize that the medication that helps our bodies move affects our brains. I know I became somewhat Paranoid. Someone had told me a few years a go that Gabapantin was affecting me. One of the side effects was rage, anger and outbursts. So I went to the doctor and he helped wean me down to a reasonable amount that still controlled the nerve pain as well as seizures. However the other medications remained the same as they were very necessary in allowing me to move or walk.
When our brains are affected we don't know about it. It's no different from some other diseases where the medication controls schizophrenia or depression and once the patient feels better they no longer think they need the medication. Well in our case we all knew and know we need these medications to help us be mobile. The problem is most of the medicines used for Stiff Person Syndrome are flukes meant for other diseases and we ride on the coat tails of their diseases in order to control ours."

I know myself and reading what other say we need to truly understand and be informed about what we are taking just like my friend above mentioned.  Since being on a higher dosage of my medication I know my thoughts are more muddled then they use to be, I suddenly forget words in the middle of sentences, or lose my train of thought completely. I know I cannot go out on some days when for some reason that day my medication makes me feel so zoned out that  I could be a danger to myself or others, even with my husband being there to help me.  I am afraid to speak to people some days too for fear of what I might say.   I have read and understand that my medication although helps me in many ways with my mobility can and does affect me emotionally or have outburst that if you did not know the side effects of what I was taking you would never speak to me again or think I have totally lost grip with reality.  I get angry out of the blue and lucky after having a serious conversation with my husband one night I helped him to understand and realize that it's not me but the medication making me behave in a manner that does not reflect the person I used to be... we have a code word and I think it's important everyone learns this skill and the earlier the better for them and their loved ones.

 I often read people asking others in the support groups about what they take, side effects etc, but they need to be aware of the changes in themselves...become more aware how they are affecting you not what others are going through everyone's genetic make-up is different which is why some medications work for some and yet may not work for you.  Everyone is on different medication combinations, dosages and  treatments.  Only you can be responsible for you!  We can offer advice etc but it comes down to you educating yourself and being self aware more then relying on the advice of others. Everyone that reads this on the support groups, or has a conversation with their main caregivers need to realize this and learn on their own and take note of how these medications are affect them personally, and any serious changes in behavior or complications you feel you are having need to be addressed with your doctors.

As for the email sent to me, my friend  is now on lower dosages of the medications we take and was lucky enough to be part of a clinical trial study with stem cell research and has a clearer mind as she is slowly being weaned off the medications she was on for years. She had made at the time some irrational decisions that could have ruined her family but was lucky enough like I feel I am by having a serious talk with her main caregiver and offered good advice which I would like to share with her permission;

"We or I truly believe that our caregivers have to have common sense and let that prevail. Somehow he needed to recognize when my thoughts were not or are not rational and take over for himself without any input from me. But he loves me and for what ever reason he did what I wanted him to do. I'm sad that I did this to our family that they have seen my outburst and I don't remember even one of them. This is the disease as well as the medication. I know for a fact that Valium replaces the enzyme missing at the base of the brain. It's what gave me the most freedom in a very short period of time. The first dose was 2 mg at the doctors office and withing 10 minutes I was walking without any help and my gait had changed dramatically. The side effects? Please take the time to read about each medication that you are on or have your care giver read it so that they understand when we are having a lucid moment or when we are out of control. I was out of control and had no idea. 

I truly hope this helps others to understand and again if I hurt anyone's feelings I apologize. I really am sorry to my family, my friends and my SPS family. If you are aware that this can happen to you too it would be wise to have a power of attorney written up. We had this in place where we lived as well as a health directive. It was our saving grace. At least my husband was assured by this piece of paper that I could never sell the house, or change anything of major importance without his signature. I no longer have a credit card in my name. As my health improves and it is, I will re build my own credit and work hard at raising awareness for Stiff Person Syndrome. We still need to be there for one another as best we can. At this time I am no longer in any SPS groups as I need an absolute stress free life in order to heal completely. My heart and my prayers are with you every day. I have always and will continue to always pray for all the people I have met through Face Book with Stiff Person Syndrome." 

I  hope this post will make you pause and think to yourself is this the real me talking, being aggressive and hurtful to people or is this the one now taking multiple combinations of medications.   I would also say to those that take things personally again is it the medications making you react or is this the real you?  Remember we are trying to cope with a condition that we know more about then most of our medical professions we rely on or our family and friends. Stop, pause and think about what you are about to say or in how you will respond before the knee-jerk reaction sets in ( I myself did this last week from something that I felt very strongly and passionately about in one of the groups, but stopped myself and realized I would do myself more harm then good by letting my anger and frustration out).  If you still want to express your views after you have taken time to pause and reflect then do so in a respectful manor but I think you will realize if you take a moment and really think about how the stress on either yourself or someone else you talk to you and how much harm you will do to yourself or that person you will dismiss those thoughts before they come out. At least I hope you do...I know I have many times... my frustration is mostly with myself , the lack of understanding from my medical system and my condition becoming worse with the things I can no longer do, not with others fighting their own battle.

Picture The Pain

Happy New Year!  I know the month is half  over and I have not written a post since November but so much has happened and with the holiday's and cold weather settling in the month of December has been rough on this crazy journey of mine.

I know I speak and post at times a lot about pain and my condition but I truly believe there are more cases being misdiagnosed and this condition is not as rare as believed.  They call it the one in one million syndrome but I believe that saying should be changed to one of the millions who are misdiagnosed, and my purpose has become to spread the word even if it is one person at a time.

Thank you to those that were as excited as I was to be put back on my medication and possibly having a shot at another treatment plan.

I am happy to report  that since being put back on Diazepam and a much higher dosage then my other neurologist tried,  I can walk freely now for longer periods of time without feeling that with each step I'm going to fall over or actually fall over as my back muscles are so rigid, (imagine yourself walking in concrete and that is what I experience everyday as I try to walk).  I also have movement in my neck again without pain...may sound non-earth shattering to those who are healthy but to me and those that understand it's a huge improvement, to be able to hold my head up for longer periods of time is heaven.

One misconception that I would like to add is this does not cure me of my almost daily and sometimes multiple times a day spasms which can occur from emotional distress, a sudden noise, a touch or as my video will show a slight twist of my body a movement I did without even thinking about what I was doing.   What you will see can last for seconds, minutes or hours I never know, nor do those who witness them.  They also can come out of the blue and unfortunately I have little warning when I am about to go into a full blown spasm.

I know I have mentioned having body spasms and how the muscles move, twist  and go ridged without my control which  is the most unbearable pain I would not wish on anyone.  And I am now ready to share what a body spasms looks like please keep in mind no two people with Stiff Person Syndrome are alike.  And  my new neurologist by listening to me even through my tests have been negative has willingly put me on a higher dosage of that medication which helps give the  proof needed for those of us who's tests all come back negative that we do have Stiff Person Syndrome.  This to me was also proven the night I went into the hospital and they put Diazepam and Ativan via intravenous into my system to stop my body attacking itself which works much quicker then taking it orally. To those fighting to be heard please  keep fighting to have doctors understand you are not a drug seeker as so many believe is the case when you ask for higher dosages of medications deemed addictive.  Nor are you making up your condition and it can't be as bad as you say. I am not looking for sympathy by sharing this video just an understanding for all of those fighting that this condition is real, and yet because we look normal and show no outward signs of illness in a flash this is what can happen to us.

 This video was 10 minutes into a 15 minute spasm, which also is why my head is no longer on the pillows which help me as sometimes I suddenly can not swallow or breath properly during my spasms but Chris knows during this time not to touch me as he will make my spasms worse, unless he realizes I am in total distress and will move me. You will note how it moves from muscle to muscle so you can imagine the strain it puts on your system.

Also I would like to mention to those who I promise to call, visit etc once you watch my video I hope you have a better understanding as to why you suddenly don't hear from me, or why I cancel plans at the last minute, put yourself in my vulnerable place not knowing when or where this will happen, and then maybe you will understand,  Agoraphobia is becoming an issue as this condition takes over my life and others with this condition too.