Monday, August 1, 2016

Manic Depression


Even when I was a kid I knew that when Jimi Hendrix sang Manic Depression I felt what he felt. Now we call it Bipolar Disorder. My "official" diagnosis is Bipolar Disorder 2 Depressive, I have other diagnosis as well but let's just discuss this today. What this says is that my mood disorder isn't considered overly severe (by medical standards) and I'm normally depressed. Since the onset of my Chronic Migraines and Cluster Headaches I've gone through two manic phases, one being current. I'd say on average I'd have one every few years, after my teen years. That would be me in a drug fueled manic phase when I was about 17 above, it lasted two years and left me with serious consequences as well as a disbelief I lived through it. This was probably my peak.

Why am I talking about this today? I just read a terrible article about 5 truths of mania. Sure, I guess they were true on a very basic level. For example, "I'm going to read all the books"... right, lofty goals but it's so much larger and scarier than that and I'm going to tell the really awful truths about mania because that's what I do, it's my jam. Keep in mind, my bipolar is the "easy" bipolar. 

I'll keep my lofty goals in check and stick with 5 things about mania as well. 

1. Lofty goals! I'm going to catch up on my reading, catch up with my friends, finally finish Game of Thrones.... and so on, mostly because I'm not sleeping and when I'm not sleeping I feel weird and I just can't slow down, but I'm really tired so I'm drinking a lot of coffee. See where this is going?

2. Perfection! I feel weird so I can't quite understand what I'm reading, or saying to people and does GOT seem stranger than normal. I'll just clean the house! Great idea but there's this one spot on the floor that just stays sticky and I have to mop it over and over. Now I have to start washing my hands every time I touch something because I hate anything that could possibly be sticky. I'd better just leave the house for a while and take a break. It will help me relax.

3. I'll just run to the store. I need to pick up some socks... Excessive Shopping. I have groceries, a summer wardrobe and there was a sale at the jewelry store. Also my hairdresser squeezed me in and I have a whole new look and I have to say I look really good! I just look different. I feel really confident and that's a good thing right? I always feel so bad about myself. I'm probably just feeling better because the new meds are working. I don't need to call the doctor. I feel so good right now, I'm just going to go get a quick drink.

4. Hyper sexuality or Excessive anything that might be bad for you. I'm fine after a few drinks to drive besides there's all these cute men here talking to me. I knew I looked better. I wonder if anyone has anything besides alcohol. This group of people wants to hang out and they seem fun.

5. It all hurts and you can be a depressed manic. I can't get the house clean or do anything else because I can't concentrate. I don't want to be around anyone because I'm acting weird and I know it. I have to stop shopping online. I'm afraid to be alone, I hear things and I can't sleep. I hate everyone and no one is spared my manic anger. I don't know what to do. Just make it all stop. Now call your doctor.

I can barely write about it because I hate being manic so much but I also love it too. I feel like 10 times the person. That's why patients never call the doctor when they are in a manic phase. This is also the time most likely for someone to harm themselves because they have the energy to do it. If you know someone who is depressed and suddenly their mood improves you should pay attention. 

Thanks to my time in DBT Therapy I feel like I have skills now to avoid many of these things. There's nothing wrong with making lists of my lofty goals of things to do, or creating a "mania schedule". I have plans for these things in place. Do I win every day? Nope but I try really hard every day and that's all I can do. I don't think the cats can help me much so the hard work is up to me. It's a bit of a crap deal when your brain chemistry imbalance is telling you to do things that make perfect sense but you have remember your brain isn't correct. There isn't anything harder.

Thursday, July 28, 2016

Anxiety




I believe we've all experienced times of anxiety. The day before a job interview, the first day of school or a blind date. It's a painful feeling residing inside your ribcage and it seems to take over your entire nervous system, also your higher brain functions. Now imagine feeling this all the time and your job, should you choose to accept it, is to fight it in any way possible. This can include channeling it, ignoring it, giving into it, developing destructive behaviors, disguising it, talking about it, finding help and developing skills on your own to manage it. I do all of these things but I haven't always. Before I  move on, I think this is a great article!

http://realhealthhelper.com/common-panic-anxiety-attack-symptoms-10-signs-you-may-have-an-anxiety-disorder/

I know I've been complaining so much about how high my anxiety is lately, which is why I threw in some informational blog posts. See how I bored you to death with my medical procedures! But then I have a week like last week and the universe (or whatever) has a way making me see face the truth about my anxiety and when I had two huge moments of clarity at the beginning, then the end of the "week" I finally understood the largeness of what I'm carrying. Thanks to two of my doctors I can even see this monster that's grown and taken over my body. Imagine that kid from The Ring drawing the creepy black scribble circles over and over, that is my anxiety (you may include the creepy kid).
Got all of it? Now add chest pain and heart palpitations. There I am.

My first glimpse of who this demon was, was during my acupuncture session when the needles triggered a trauma response from my surgery. My practitioner is also my energy healer. I bet you thought you'd never hear me say that! I never thought I would either but when we met 10 years ago, she helped me get off pain medication, we had a connection and my "energy", or whatever, was moved. I can't speak of it to other people because it's my experience and it's real and it works. I just started crying, well sobbing. She told me it was ok to just let go of this thing that I'm holding. I knew then that I couldn't let go. Normally I'm all about setting energy free but I knew if I did I would be letting myself go. I'm holding on so tightly because I'm holding myself together, if I let go, I told her, she would be taking me to a psychiatric facility for care. Funnily, she took me the last time I went. This made me laugh and cry and the same time and this is when I knew that I am having my third nervous breakdown.

I jetted off to Utah for a long weekend and didn't sleep but had an amazing time with one of my best friends. I don't feel weird around her because I'm just myself and she's always just let me be that way. It was a wonderful respite for my mind, heart and soul. There's no thank you big enough for that.

As soon as I get home my creepy anxiety kid, who almost fell asleep, started perking up. No sleep, thank goodness for nieces on summer vacation and I made it to my therapist. Back where I left off. I'm feeling manic again, I'm not self harming (yet, I'm too tired), I'm resentful of my life, I can't breathe because I become so anxious and it spills out of my mouth that my anxiety, at this level is me. That's what my breakdown previously meant. I have to keep this because it's so damn important to everyone that I stay alive. I have to keep it together but it's causing me this stress. 

It's also my mental illness, I have anxiety that normally I can handle. It's also my migraines, when am I going to get one, or how long will I have it? It's also trying to manage chronic illness, when do I get my prescriptions, when are my appointments, whats happening with insurance and finally regular life. Just my regular life is complicated, like yours is. Fuck man, our parents never told us this is what life was. 

Life has moments of beauty and certainly mine has been so lucky in many, many ways! I'm often brought to tears of gratitude for this but there are important things that everyone should have that I haven't and I never will. 

If my extra anxiety is me holding me together during this time of having Chronic Migraines and Cluster Headaches and struggling with my Bipolar as a result, and there is no treatment or prognosis for my health improvement (rather I seem to be getting worse) what will this mean? My therapist would like me to stay with my friend in Utah, or my friend in Hawaii, for a while but that really doesn't seem like an answer, because there is no answer to this riddle. 

Understanding all of this now, and the events of the last month and a half, have broken my heart for the last time. Will I act different my friends? Naw, I'm still made out of glitter but now I'd rather say my broken heart is held together with anxiety and smothered in glitter. 

Wednesday, July 20, 2016

Botox


This is brief but I wanted to write it while I had it in mind!

As long as I've been explaining things, see previous post, I've realized that when I tell people I'm getting Botox for my migraines they might think I'm just getting a few shots in my forehead and that it was a benefit to me in many ways. I thought maybe I ought to clear up these misconceptions.

The above photo is the injection protocol equaling 31 shots but your doctor can add up to 45 shots. I received "extra" shots last visit and I'm not really sure what that means in terms of number of shots but it felt like a lot!

You may not realize it but these little injections hurt quite a bit, and it's a long injection. If I already have a migraine it's extremely painful and scary. Last time I told my doctor that it reminded me of this 

I was really surprised she knew who the Borg from Star Trek were, so now I get a shot prior to the injections called Torodol. It's an anti inflammatory used for pain relief, primarily for migraine suffers and you can only get it at hospitals.

I used to only feel this Borg attack when I had Botox but ever since my Cryoablation anything coming towards my head, especially a needle scares the crap out of me. I had some acupuncture yesterday and I spent a good deal crying after the head needles went in. Gratefully my practitioner is also a dear friend so I didn't feel like a freak as I had a breakdown on her table.

After I get the Botox shots it takes about two weeks for it to work on my migraines. What does that mean? I wish I knew! Sometimes I've gone a few weeks pain free and other times it just makes my migraines last a day instead of 20 days. Right now it doesn't seem to be working that great.

I'm still getting migraines every other day, they aren't quite as painful, medication isn't working on them, and they aren't lasting as long but my understanding is that this isn't how they should be working but this is better than nothing.

Yes, if you suffer from chronic migraines and cluster headaches you too can hope for something terrible but not as terrible as it was. Forgive me if I sound less than cheerful about my diminishing Botox odds.

Should you try getting it for your migraines? Yes! Absolutely, once again you should try everything and anything you have available to you. Do your research and be informed on what treatments are out there for you.

As a brief follow up to my friends and family, I will be admitted into Stanford Hospital for a two day stay for the IV Infusion treatment in August. I will keep you posted.

Sunday, July 17, 2016

Infusions


As promised here is my experience with an IV Infusion therapy for chronic migraines and cluster headaches! I know you've all been holding your breath! I hope you learn some things, I actually did while researching for this post.

This is how the IV set up looks like. My bags were filled with Saline and magnesium, then DHE. DHE is an analgesic in the Ergot family, specifically used for migraines only. Why my doctor doesn't use it or have it I'm not sure. The DHE made me very, very sick, like "bring me a bucket" sick. They slowed down the pace of entry and it helped a bit. 

I only have one good vein for blood, or IV's so my arm was left mostly bruised and swollen. Attached to the IV are ports so that they can give you other medications as needed. I received the usual emergency medications, 2 types of nausea meds, an IV only anti inflammatory for pain, benedryl etc.

Each round took 2 hours and I did two in one day. It wasn't pretty and this isn't something you would do unless you were desperate. The DHE doesn't work immediately either, it's really like leaping off a cliff. Especially when you fly from Oregon to California to have it done. 

It did break my migraine and I felt great, after a whole day of recovery, for about three days until I got another migraine. As I mentioned yesterday, my doctor now wants to admit me into the hospital for two days for this therapy and to be monitored. I said absolutely! Please monitor me! 

Going to the infusion clinic and meeting the people there, and even my doctor finally perking up, makes me felt 100% validated. It was totally different that being at the ER. There were no questions. They gave you your meds, they gave you more meds if you needed it. They talked to me, brought me food and blankets. While I was there I finally had a real medical condition. Some of you will understand this. I was treated with respect, dignity and they so helpful. As for my doctor at Stanford, I feel like she's finally doing something. Maybe I just needed to complain, or explain better. 

You guys help me a lot with that. Thank you for that! Overall, I would say that if you have the opportunity to try the DHE IV Infusion Therapy. If you're like me you'll try anything to break a chronic migraine or a long migraine. It's not easy, you'll be sick, you'll hurt but maybe you'll feel great! I'm not giving up on this therapy yet.

Always do your research and be your own advocate when you see your physician! It's so important.



Saturday, July 16, 2016

Hospitals


This post is primarily an update, I can barely keep track of myself lately! The last two months have been hard. Well, let me be real, they've been like, threading a needle in the dark, type of hard. 

First I've been in the hospital 5 times in the last two months. Twice in the ER for migraines, once for my surgery, once for my Botox procedure and the most recent was another trip to Stanford for an IV infusion therapy to try to stop yet another crazy migraine. Yes, even my migraines can range from what seems normal (to me) to crazy. I still feel like I haven't recovered from the surgery! I can still feel bruises on my head from the all the shots. I even managed extra botox this time. Lucky me, 50 shots this time.

If you read a previous post you know I was very depressed and my doctor changed my medication. Because of that or because I was working so hard to get out of my darkness I put myself in a manic phase. Those don't sound so bad until you haven't slept for a week and have a list of destructive behaviors that you've picked up again. Even with my migraines I've been running myself ragged, because you can't stop. I'm out all day running errands, making up things for me to do, which are good coping skills when you are depressed but can be excessive when you are manic. The only way to explain is to tell you is that I can't stop thinking and moving and I'm so tired. 

But my hospital visits may not be over. My psychiatrist has said if I can't get it together she has to admit me to a psychiatric hospital to keep me safe and I do trust this woman with my life. I'll do what she says I have to do, although I'm not sure how I can control my migraine enviornment so my solution has been to try to plan as many trips as I can. However brilliant this plan is, and everyone approves, its expensive and again it feels exhausting because I'm the one that takes care of everything at home.

My next probable hospital visit will be a two day stay when I get another bad migraine to try a more thorough IV infusion therapy, instead of doing it one day. My next post will be on what IV therapy for a migraine is. For now it's pretty much what it sounds like but I promise to give you more details very soon. If my doctor in Stanford can't set it up where I live then I will have to get it done there and my husband won't be available to be with me until September which is around the time for my next botox procedure. I told her that I didn't know if my migraines are getting worse or if my tolerance for this is getting lower.

I'd like to add a little paragraph that the last two months have been abnormally stressful as well. Things that wouldn't happen, happened. Without giving you a litany I'll share that I tripped and fell very hard (and amazingly far) on my driveway. I didn't go to the hospital, ha ha, but it's been several days and I think I started my biggest fibromyalgia flare in years. I don't consider myself a complainer or someone who lets things hold me back but I'm on thin ice.

Why would I share any of this? I don't know, why do I ever share. I guess because people need to know that Mental Illness isn't an illness and that you can look normal and be in more pain than anyone knows. I'm just me, the same person but perhaps you may see people with new eyes. We are a community of humans right? Thank you for being mine and always listening.

Sunday, July 3, 2016

OOTD


What does OOTD stand for? Outfit of the day, of course! If you have teenagers, are a millennial or are tragically hip like myself, you will already know this. Obviously, this isn't one of my better photos because my husband couldn't nail a good photo of me if I was Heidi Klum but I loved the new dress that I bought so I needed photos to post on Facebook.

Lately I've been posting a lot of OOTD pictures. It started because I had gained so much weight from the migraine medications and I finally bought some cute clothes that fit and I felt like other people might want to know where to buy plus size clothes. Now I'm doing it for another reason.

In my last few entries I think you've noticed I'm going through a wicked depressive episode. Thanks to all my years in DBT therapy I've learned many skills to try to combat this. Things like... make plans in the future, get out of the house (no matter what you're doing), get a hobby, binge on Netflix... Whatever it takes not to kill yourself. I'm doing all of these things, which then gets complicated for someone who is bipolar because they can also be destructive behaviors. Let's just say my husband won't be seeing my credit card bill. I'm exhausted. I think you probably see the cycle here.

One of the things that I started doing was on the days I got out of bed and got dressed, I took a photo of my OOTD and posted it on FB. I generally have a reason for wearing something, so I'm writing the "backstory" and where the outfit came from. I'm not doing it every day, some days I only make it to the kitchen and back to bed but it means something that I'm doing it. I've even been known to wear make-up! Gasp!

This alone isn't going to keep me alive but it might help give me more of a reason to run imaginary errands or go for a walk. Maybe this is something that can help you and at the very least we can be assured that we have a keen fashion sense and surely I'm slaying the guy at the pharmacy.

Sunday, June 19, 2016

Brain Surgery


I have a lot to say and it's all mixed up with the cryoablation of my occipital nerves. Which is not exactly brain surgery but it was a little more than I was expecting, so I would say it was definitely a cranium procedure. I think that's more descriptive. If I thought endless migraines and 40 shots of botox was bad I had a whole world of bad open up to me.

First let me say I've been in a deep depression but I only want to speak about prior to the procedure. I had to take some time offline because it was that dark. If you know me, you know I've done 3 Facebook breaks in 9 years. Again, why is another post. I tried to reach out to as many people as I could and actually talk to them, send a letter, text people I haven't spoken to in years. For more than one reason but I just felt compelled to. I'm so glad I did that.

I was working with my therapist doing self hypnosis and meditation but I was having the kind of panic attacks that give you chest pain. My psychiatrist, the genius that she is, told me why this was happening. She said " You're afraid if this procedure doesn't work then it's the end of the line because you've been getting worse and no one seems able to help you. I sure wish I could. I pray for you and I know you never give up" And she gave me a prescription for Valium. I wish I had known then what I know now. I would have asked for something much, much stronger.

I've only told this story in full to one person because I was actually traumatized by it. When I talk about it, I still start crying sometimes and It's been almost two weeks. Even my husband hasn't heard it because I didn't want to scare him. What if it works and I have to do it again? Having a little panic attack now. But I want to tell my friends how it went and be honest, if you're sensitive to medical procedures maybe you shouldn't read on. I also want to tell other people who may want to get this procedure what to expect because I had no idea and there have been very real consequences for me.

I did have a migraine going in. This is important to know, it had been going on for about 25 days and my pain level that day was about a 6, which for me is not bad. That's my functioning level. My first indication that the procedure was going to be a little harder than I thought was when my nurse told me I couldn't get in water for several days after because the puncture wounds are too deep. Um, ok. I want to say now that every single person I was with at Stanford was amazing during this process. She stayed with me until they came, I'm not sure why. We were chatting a lot but she did say that they didn't do this procedure on heads very often. Perhaps she was nervous for me. Also, the doctor introduced herself and seemed really nice. The OR nurse came to get me, she gave me lots of warm blankets and off we went.

I was nervous but I was using my self hypnosis techniques. The main thing that made me nervous is that I had to be awake during the procedure so that I could tell them where it hurt. I was aware of that so I imagined it similar to a regular occipital nerve block where the doctor just puts a needle in your nerve and your good to go. I knew this was going deeper, they were injecting nitrous oxide and there would be, I was told, 6 shots. There wound up being at least 15 shots that I could count.

You lay face down, like a massage table and then they tape your head down. They tape your head down!!! It makes sense but it made me uncomfortable immediately. Still no drugs and I'm working into a panic. Slow breaths. I get ultra sounds of the back of my head. Everyone's asking how I am but no one can really hear me and there's a towel in my face so I can't breathe well. Finally, I have to yell this as the chirpy surgeon asks if I'm ready. For 20 minutes, at least, I couldn't move my head to breathe because my head is taped down. 

They are giving me IV sedatives and IV painkillers, supposedly but I never felt calmer and my pain never went down even when the doctor told them to max me out. I consider myself someone to have a high tolerance to pain. I feel like most people say it but even after my hysterectomy they said they had given me enough pain medication for a 300 pound man. Many people in my family are the same way.

"The needle is going in and it's going to pinch a little" and it did, at first. I think I was given a local anasthetic prior to the mega nitrous oxide, canister holding, needle went in. Yes, it held a canister, I didn't see it but they kept saying "I think we're going to need more canisters" and you could hear them clinking together as they popped them in to whatever apparatus they had.

Then they give me the real shots. They started higher on the back of my head which is a less painful area but it hurt really bad and I kept hyperventilating because after the "little pinch" the real shots went in. I could feel a needle puncture my cranium, more disturbing I could hear it and feel it. Then they started moving down and they hit THE SPOT. I was already crying but I believe I cried out in pain. This was the most pain I've ever experienced. I can't think about it without tearing up. As they had been going down to that area it had been getting worse but we went to 100 fast.

They kept increasing my pain meds and sedatives. I told them it was a 10. They were so kind, saying I'd been in pain before I started and just max me out. I don't need to tell you about the other side but I made sure to show them points they missed. I wasn't doing this for nothing. Finally it was over.

I couldn't stop crying. I couldn't roll over because of that. They asked what was wrong and I said I was still in pain. I went to a room and the nurse asked me questions about my pain and I just cried. They gave me more pain medication. At some point they can't give you anymore and I was sent home, or in my case to our hotel room.

I spent the next two weeks trying to get post surgical pain medication, which I just recieved yesterday. Most of the injection sites feel fine now except the area that hit the 10. At times I can't tell if I'm having a migraine or if it's surgical pain. I usually wait to see what other symptoms I might have. My pain level until the last couple of days has been an 8 and thanks to my previous life as a professional person, my well written arguement for my ability to take pain meds only for surgical pain did win me my perscription but not when I needed it most. 

I've cried like that one other time, when my grandmother died. It's the crying when the pain is too much and something inside of you breaks. Something inside of me did break and when you have a mental break it doesn't fix. It's not like a broken heart. Only time and therapy will help me understand what happened to me. In the meantime, I'm still taking the Valium because I'm not ok. 

On the plus side, they said it could take about a week to work. I haven't had a full migraine in about 4 days. I know that doesn't sound like much but after having a 30+ day migraine it's not bad. I have a headache but I can deal with that and next week I go in for my Botox appointment. Hopefully between the two there will be relief. Even though that means having this procedure done again in about 4-6 months. 

I must be mental!