Like a allergic reaction to something you smell or eat, you are not prepared because it is sudden. You can’t prevent a Dystonia Attack and having one is like having an Anxiety Attack. In fact, you can be having both at the same time. The best thing to do is to be prepared. Take your medicine with you when you leave your home. I wasn’t prepared at all. Since I have made some changes to my diet and medication, I haven’t had an attack in months. Once you have your first one which I can remember very well, you know that it can happen again no matter how much better you feel. This does not apply to everyone and some people have had Deep Brain Stimulation done which is a surgery that could eliminate most of or all of your symptoms. You have to qualify for this procedure and I do not qualify yet.
It’s hard to describe what an attack is like. And there are triggers that I have to avoid like stress which is impossible to avoid and loud arguing. Even if I am not the one that is loud. I am diagnosed with a ton of things including Dystonia and Occasional Tremors. Even as I type this, I am experiencing tremors probably from the loud noises in my environment. Noises that I have no control over that bother my ears as well. It makes it hard to concentrate right now and when I had the attack, I had been fine for days. I was just dealing with the tremors. My Dystonia Attack occurred before I could finish my wash day for my hair. I got into a very stressful and heated conversation and my body went haywire. I started to convulse and took a muscle relaxer. It helped slow those sudden movements and the shaking down but it didn’t stop the attack. I still was in the bed sitting and could barely move or talk. My speech was choppy and I was a bit out of breath from shaking like that. Someone suggested I try another type of medicine and at first, I said no. As the minutes passed, I decided I was going to go get some medicine in my pajamas because there was no way I could get dressed. I was way too stiff and in pain. I could only take a few steps at a time. I put on my favorite hoodie and headed towards the door in my house shoes.
Since I am trying to get my Marijuana License and already have my papers, I decided to go to the Dispensary that helped me renew everything. It is close to my house and owned by some friends of ours who also own a few other businesses in the neighborhood. Of course this wasn’t my first time there. It was my first time there again in some years. I thought it was going to look different now than it did back then. It didn’t but they have good, quality products for deals. I couldn’t decide what to get because there was limited options when it came down to strains. I went with what I knew would work, Fruity Pebbles because I smoke it all the time now. I just had ran out the night before I had the attack. I also asked for my free stuff since to him, I was a first time customer. The free stuff can sometimes be worth it depending on where you go. All I got was a free pre-rolled joint of something that wasn’t strong enough and that tasted terrible. But I was mixing it with the pebbles to stretch the pebbles. It worked wonders.
This is not an ad for anything or anyone. This method of natural remedy may not be good for those with Dystonia but it works for me. It is better than drinking or taking a bunch of pills all day long. I try to save the pain meds for emergencies. I don’t want to become addicted to pills like some of my family and friends. Medical Marijuana got me though the rest of the day and I haven’t had anymore attacks since I smoked it. I am not ashamed to say this. I want others to know that you don’t even have to smoke it. You can try the oils, edibles, topical rubs, or the tea like we make. I smoked out of desperation. I didn’t want to be immobile when my daughter got home from school. She noticed how I was walking and asked me what was wrong. I told her my legs hurt and that I needed to go lay down.
I am still recovering from the attack and under a lot of medical care. I have an appointment with the Internal Medicine doctor on Monday to address the swelling in my face, leg, ankles, and feet. Maybe she will be more helpful this time since I told them this was the reason why I was coming back in so soon. I was just there on the 19th of this month for my first appointment with her. My other appointment for Thursday morning went fine but I wasn’t able to see a doctor which made it almost like a waste of time. And it hurts to walk with all this swelling. The other doctor also came to the house like he said he would. He was late but I understand they are very busy. He took a look at my face and the swelling every where else and asked me what did I change or did I start a new medicine. Nope. I have dry mouth and have been drinking a lot more fluids. He said that maybe I was drinking too much and it was washing the electrodes out of my body making me feel weak and fatigued. He suggested I switch to Gatorade like my oldest cousin said. Gatorade 2 which I have never paid any attention to. He also said elevate your feet of course. Too many fluids? I was shocked but not surprised. That is what I was thinking to myself. I am retaining water. I didn’t think it was the amount according to your weight and each person is different. I suffer from dry mouth from the meds I take. Lots of fluids is what a friend suggested for it but others suggest the Biotene gum. Gum does help me with dry mouth and I am going to order some from Amazon when I order my hair products. I will still drink water, but not enough to be swollen up like a balloon. Pepsi is my favorite beverage of course. Going to elevate my feet for real when I lay back down and hope it helps. Decreasing my fluids will be the hardest part.
We get most of our information about Dystonia from the Dystonia Medical Research Foundation but this article explains it well. “Syndrome” is correct but I refer to it as a disorder. It is rare and this is general information. I have Myoclonic Dystonia or Myoclunus which is the sudden jerking like movements you see in my videos on YouTube. The link to my channel is in the menu. https://www.medicinenet.com/dystonia/article.htm#
This swelling issue has been going on for too long and my ankles, feet and legs hurt. Since it was my first time seeing the new doctor, when I showed her my ankle, she didn’t really act like it was a big deal. My eye she said it would be easier to figure out what is going on with it, if she could have seen it first hand. Like I said in a previous post, she thinks it is my allergies even though I take allergy medicine everyday. She also said that I could have built up a tolerance for the kind that I take and said to rotate this one with the other kind. When my eyes are puffy or almost swollen closed, I am supposed to take the Zyrtec and it should bring the swelling down. No more hot towels according to her.
The pictures didn’t really show how bad the eye swelling was. Since this past Friday when I saw the doctor, my right eye was swollen instead of my left and now both of my feet. Part of my leg too. I haven’t filled the prescription yet or I need to go pick it up from the pharmacy. Both of my feet are swollen as well as my ankles. The swelling had gotten so bad that it had spread up into my right leg just below the knee and all the way to the foot. Everything felt tight when I woke up, I knew something was wrong since I had the same feeling with my eyes. I have limited my activities but still have to go up and down the stairs and that hurts. It is like I am on bed rest but making progress. I can’t do my hair yet because I would have to take a break from that standing with every braid.
I didn’t really elevate them. I didn’t try soaking. My other doctor which is Pain Management doc told me to limit my standing and or walking when they swell and I should be fine. He said it wasn’t a big deal in most people but in someone with my illness it is. I would rather go through the Internal Medicine doctor for this because it is more in line with the type of care she can provide. I also have two doctors that come out to the house at least once a month. One can take a look at my ankles and feet today. His office called yesterday to set up a home visit. I can show them to him and get a second opinion. The other doctor doesn’t want me to have these doctors who come to my house if I am going to be a patient of hers. She says that is like too many cooks in the kitchen but for me it is like a second opinion and a fresh set of eyes. Especially since it is limiting my daily activities at home with my child. She always needs something.
I have two appointments today and one I have to go out the house for. That will be a challenge. I can walk but it is really harder with my feet like this. I picked out all my so called outfits before the pain got this bad and hung them up in the closet. That way I can just grab one and be done. It hurts to even sit here and type this but I am not standing on my feet for sure. My ankles hurt when I try to move them and I can barely move the right one. I would feel a lot better if they were just swollen without the pain. The pain makes it hard for me to concentrate and nobody should have to lay and suffer in pain. I just don’t want to take a pain pill for it. It could get worse with me going to the doctor and coming back and that is when I would need a pill maybe. We all know about the opioid crisis and I don’t want to end up like that.
Everything is weird now with him being at home more. We have had one disagreement or two in the past few days. And they are still calling him to come in. He didn’t give them any notice. He told his boss how he needs things to be again and she ignored him again. Now he is really fed up and a bit cranky. I am lucky I can even use the laptop right now. Hopefully he got us some medicine. It may not be for pain necessarily, but it will help with the stiffness. It’s almost the weekend and I can really get some rest. Staying off my feet makes me feel lazy because it means I can’t exercise like I normally do. Going up and down the stairs all day is part of my daily routine. I do those stairs with pleasure. My Pain Management doctor was trying to put me in a wheel chair and I was not going to except that. I can’t walk normal like everyone else already. I am walking even worse right now. I am going down the stairs just to get water which someone can bring me but I don’t want to be a bother. I am glad that I do have some kind of help. Some people with Dystonia don’t and these Home Health Care Providers need to be getting paid more money for the work they do.
Behind closed doors I do. Most people just roll up but I can’t roll. I have to learn how to do it all over again. Trying to roll up anything when are shaking just isn’t going to happen. It’s hard enough for me to break down. I use a grinder sometimes. I smoke blunts and joints. Next time I am going to try to roll a joint. I like to do stuff that requires me to think first. How am I going to do it. I used to roll up twice a day with Swisher’s. I bought them by the case to save money. I was buying strawberry to cover up the taste of the depensary’s medical. Some of it worked but had a bad taste. I like mine to taste good.
Piping it gives you the actual taste as long as you keep your pipe clean. A gram of something that works really good will last me 3 days. I have low tolerance to some strains. And it depends on where I got it from. I tried a new dispensary today and got a free sample of some type of pre rolled. It tasted like it smelled. I wouldn’t buy it. I got what they call Fruity pebbles today. Last thing I tried was Wedding Cake 🍰 which they do keep but it cost more of course. Their prices were good for the selection they had. I am going to a different one next time. It is really nice and big. They sell Kosher which is for pain.
Many people with my disability are scared to try it. I tried it because I ran out of pills. It can happen to anybody. The pipe I bought because I love the way it looks and it breaks down into three pieces. It is easy to clean with water and pipe cleaners. The bowl is too small for some people, but not me. I medicate a little bit at a time. I normally smoke only Indica. Works good for the body and you don’t feel to amped up. The free one I was puffing on is now in the pipe. Somebody had to teach me how to use a pipe. I used to hate for my eyes to be red. The glasses I keep learning to wear because of that reason. Plus the help keep sunlight out my eyes since they are so sensitive now.
I appreciate delivery and my papers for my license were delivered to me ready to go. When I was feeling better, I went up there to visit the owners. The hold up was that doctor was out of town. When he got back in, he called me right away and I sent him my medical info from my last appointment. My papers were ready the next day. I was getting frustrated on how long it was taking. Like that pipe took 2 weeks or more to come. The new tablet comes next month.
Since he quit that job, it really don’t matter. I would think that they fired him and he just didn’t want to say. But they were calling. He was calling about a roofing job.
My hair is washed, detangled and oiled. I also did a blow out. After all that, my Dystonia started acting up. My pipe was ready and clean just in case I could go get something or have it delivered. So I went out dressed for spring with my favorite hoodie on. Thanks to that muscle relaxer I took. I was in that bad of shape and have been laying down since I got back. I can relax now and maybe get some sleep.
This article explains the health benefits of strawberries which I just bought some of. If you know about my eyes from reading previous post, you know that anything I can do naturally to help them is worth a shot. Cucumber with tomatoes and cheese is for lunch if we have some ranch dressing.
This was me before I strated smoking anything besides cigars. In this video, I had quit smoking my medicine. I used no oils or anything. I was just taking my pills as prescribed by my doctors.