Tuesday, May 23, 2017

I'm sad

I'm sad because my head hurts and I'm so tired of it. I don't want to keep trying to find a cure for it. I want to quit. I want to stop being in pain. I want to stop spending money on this. I want to live a quiet and happy life, well maybe not quiet. I want my old life back where we did fun things and went places and explored and I never worried about pain. I don't deserve this. I worked so hard to be healthy and this is what I got for it?

I know no one deserves pain and I know I'm not handling it graciously. I still don't understand the lesson 5.5 years later. Why did this happen to me? What purpose did it serve? What lesson is there in it? What do I take away from this experience? How is it helping others? How does it work through me to give to others?

I don't know where to go from here and I have no one to talk to about it. I feel so alone.

Thursday, May 18, 2017

Five Weeks Post SPG Radio Frequency Ablation

So tomorrow is the second side procedure. I'm not looking forward to it At All because it hurts so much. I know it will only be about half hour, but just thinking about it is spiking my current headache. I can do it, though.

So how are things five weeks post-hence?

Deep Breath.

It actually took me about three weeks to say out loud that I don't think the first procedure worked very well at all. I told Roy and just cried. Then a week later I shared with a few friends. I saw a little relief, definitely, so I don't think it was a complete failure. But did I see the improvement I thought I'd see?

Nope.

Not even close.

Most of the time my headache is the same as it always was. Maybe once a week it'll be worse on the left than the right. My suspicion is that since our weather has been so bad lately (literally changing at least once a day, often two or three times and weather change hits me hardest) that the right probably IS a little better but it's hard to tell with quick spikes when the pain level goes quickly from say a level 4 to a level 6. I think on better days I'm not really focusing on a slight pain relief on the right and when it does increase so much, it kind of hits me so hard that at that point if one side is only a little better, it's not enough to make a difference in that scenario.

So why am I doing the second side? I guess my hope is that either that side will be better or more receptive (maybe they missed the nerve or that is like a super nerve), or more likely the correlation of the two improvements together will be more than additive. Maybe both together will signal a greater feeling of relief than trying to add a 4 headache to a 6 headache and expecting to feel any dramatic sense of pain relief. After all, that really is still 75% of my original pain level. Wow, actually typing that out makes me feel better! Only a 25% reduction of pain makes a little more sense because that would be really hard to feel most of the time, if you think about it. Pain is hard to quantify sometimes. It's like you know when you feel it and it HURTS, and you know when you can ignore it, but if you think about it "Yeah, it's still there".

So here is hoping for better results tomorrow.

Sunday, April 30, 2017

So it's been a week

Really, a week and two days since I have my low frequency radio frequency ablation of the sphenopalatine ganglion nerve bundle. (Whew! Every time I type that it's a mouthful, or, uh, finger-ful.)

From what my doctor told me, I'd start noticing within six days. I tried not to hang my hat on that, but of course I did. The ONLY thing I'd noticed up to that point was that maybe Thursday (day six) my head hurt a tiny bit more on my left side than on my right (my block was done on the right).

By the way, my doctor allowed me to choose the side. I'd asked for my right since most of the time if one side is going to hurt worse, it will be my right. I figured I could tell better.

So today is eight days post. It started out a nice day so we took the dogs for a walk, which is an ordeal in itself as we have seven dogs. We decided to start with the five tiny dogs (three chihuahua mixes, a mini-pin foster, and a yorkie foster). We took them down to the park for the Best Day Ever (according to them). As we were out, the wind started up.

Wind and I are bitter enemies. Oh sure. As children we played together; "Wizard of Oz" and I used to love when the wind sang to me. However, once I had my brain hemorrhage it has become nothing more than a torture demon. Whenever it shows up it brings Spidey with it to wring out the worst of the worst headaches!

We went home and swapped out for the big dogs. Again, Best Day Ever! The wind kept on it's torture and as expected, Spidey made an entrance.

For those who are here just wanting to know about the RFA SPG block, you have to sit through my dog stories, bad jokes, and now you're wondering who the hell Spidey is. Well, Spidey is my headache. Since my brain hemorrhage or stroke was a Subarachnoid Hemorrhage and arachnoid sounds similar to arachnid, I have always referred to bad head pain as Spidey.

So Spidey started torturing me, and I decided to pay attention to how the pain was developing since it was getting too windy to really talk, plus one year old Pogie (border collie, lab mix who is really named Rogue, and is much more used to running with me, than this walking shit) was pulling me well ahead of Roy and 11 year old Dash (lab, pit bull mix who is not used to even this walking shit, and is much heavier and slower, but was still having the Best Day Ever).

As the pain ramped up:

Right side: 3-4-5 and stopped
Left side: 3-4-5-6-7->8 (ready to cry by the time we got home)

So...I'm maybe starting to feel like it might have worked, but am still hesitant to get my hopes up.

For one thing, there were still a few spikes of pain on the right. I do think the nerve is still dying, but even right now the right is better.

Plus I'm just worried if I get them up too high and it's just a fluke I'll be so disappointed.

But if this is working and even if the best I get is days that don't go above five, that would be much better. I really want complete relief most days, though. I know I can't be guaranteed that, but it sure would be nice.

Monday, April 24, 2017

Three Days Post RF Ablation SPG Block WHEEEEEE!

Before I had my radio frequency ablation sphenopalatine ganglion block expealidocious, I looked everywhere for information on it and could not find it. None. Nada. Okay, not none, but I couldn't find anything from real people. I could find advertisements from pain clinics, and a few short articles, some study abstracts, and I dug deep and found a fantastic description complete with cadaver photos from The Cleveland Clinic. But I did not find any people who said, "This is what happens, and this is how I felt when it happened, and here is my outcome."

So I'm trying to document it in hopes someone else might stumble upon this someday and find it helpful.

So after the procedure I felt pretty good the rest of the day. My jaw was sore, and cheek was swollen, but overall I felt pretty good. Towards the end of the day my headache came back about a level 5 or 6. We were having a windstorm, so I wasn't surprised. I was also told that I wouldn't feel relief right away; that it would take a few days.

Saturday wasn't too bad, but I wasn't sure if it was the procedure or just a relatively good day as the weather was pretty nice. However as the day went on, the head ramped up and it was bilateral, so no love.

Sunday was amazing, but it was due to running. I ran a half marathon with my lovely running group. I wish I could bottle running. I wouldn't have to go through all of this! During my run I felt amazing, all the way up until the last half hour or so, but the weather really changed about that time. The rest of the day got a lot worse.

So here we are Monday. My bruising on my face is down and the swelling is almost gone. I do have a black eye, which is sort of amusing. It's not horrible, but my husband keeps joking that there is "more where that came from!" If you knew my husband, you'd get why that's funny. He is afraid of spiders and is a big teddy bear of a guy.

No pain relief, though. I did do a TON of reading on other ablations last night and it sounds like the nerves take from 6 days to sometimes up to weeks to completely stop transmitting pain signals, so I am honestly not concerned.

I did read a lot of horror stories of more pain from other ablations (not SPG, back or neck related). So far I wouldn't say more pain. Maybe more tinnitus. I'm not 100% positive, but tonight my tinnitus is really loud! Not sure if it's causation or correlation.

Friday, April 21, 2017

Radio Ablation Sphenopalatine Ganglion Block, My Experience

So I had the procedure today and if we isolate it only to the actual procedure, IT SUCKED! 

I like to share my medical procedures. No, not because I'm sick AF, but because after I had my Subarachnoid Hemorrhage I couldn't find any information on what I was going through. I could find a lot of information on what had just happened to me, and I had a care sheet and a sell by date from the doctor. But that was it. (Sell by date was when I thought All This Will Be Done and I Shall Be Whole Again!) So when I started feeling like water was being poured over my brain, and it hurt to be hugged, and I couldn't remember how to "salad" so I started crying, and I could run but walking across the room I'd fall down, and my memory was so bad I had to have my life run by a bitch called Siri...I felt left alone with nobody to talk to!! When I did find a resource here or there that said, "what you are feeling is normal after an SAH" I would cry tears of relief.

So that being said...

Here is my experience today with my first High Frequency Radio Ablation Sphenopalatine Ganglion Nerve Block (that's a mouthful in itself). 

Why: SAH in 2012 and I have had a headache every moment since then with the exception of when I have had SPG blocks. The Lidocaine blocks worked, but not as long as it did for most people. However it did tell us we were in the right spot.

The only other time I'm painfree for any period of time (besides my dreams) is when I run marathons, usually about 90 minutes into the run it fades away and it'll last until the end if I'm fast (which isn't often), or for 2.5-3 hours and then fade back in.

I arrived at the UW Pain Clinic at 8:00 (on time, thanks to Jacquie being early to pick me up, and giving up her coffee). They checked me in, did all the vitals, asked all the questions, commented on the tattoos, I changed into a gown, but was able to keep my bra, pants, and even shoes and socks on.

The Nurse started an IV. I was given Versed for sedation. I do believe some use Valium, but I had a Valium "incident" in the hospital after a surgery, so they marked it an allergy.

My doctor came in and explained the procedure fully. He is very clear. I appreciate that. He told me there are a lot of nerves in that area so before they could give me anesthesia, they would have to find the right nerve and it would be uncomfortable. He would do this by sending a pulse down each nerve and wherever I felt a tingling would determine which nerve they were hitting. They would need to have me with all of my nerves fully awake to be able to feel all sensations. Once I felt it in my nose, close to the bridge, then they would have the right spot. At that point I would get anesthesia (general, so I'd be awake) and they would send a high frequency radio wave down through the probe (or another, I'm not sure) and it would damage the nerve. Over the next 2-4 weeks the nerve should die and regrow.  

I went into the procedure room and got up onto a narrow table. It has to be narrow so the CT Orbiter can orbit your head during the procedure. A pillow was under my shoulders so my head was well back (so be aware, if you have neck pain. Another pillow was under my knees, maybe for comfort? If so, it was the only bit of it. 

An oxygen cannula was placed in my nose. For some reason all I could think was, "It feels and smells like Barbie just stuffed her feet up my nose" and then I wanted to giggle. I hadn't even had the Versed yet!! Yesterday WAS 4/20, but still. I was completely sober!

The doctor came in and positioned my head with an x-ray, then they ran a test CT scan. Once it was clarified that I was properly positioned my head was taped down so it wouldn't move during the procedure.

Dr. Chu washed my face very well, four times with an alcohol dish scrubber. Then he palpated all up and down the Zygomatic Arch and made me a marked woman along the arch. They checked placement one more time.

That's when the fun began. So from what I understand, since I only experienced the sensations and couldn't see what was happening, a hollow needle was fed through the infrazygomatic arch, which is a tiny little hole. Mine is 17 mm in diameter. Most necklaces are 18 mm in diameter, so that gives you some insight into the size. They do this slowly and advance it towards the right lateral (in my case) sphenopalatine ganglion nerve bundle. (That isn't the needle type, it's part of a machine, I think.) It was sort of painful, but not horrible. 

Once it is in, the probe is sent through. That's when, for me, it got painful. Now I have a very VERY high tolerance to pain, so I was able to keep still. It was a challenge. I can't really tell how long it took, but it felt like it took a long time to find the right nerve. I know that we went back and forth on a sort of "can you hear me now" game, except it was "where do you feel that?" "In my cheek" Okay now it's in the roof of my mouth, roof of my mouth, closer to nose" etc. Finally after what felt like forever, and more than a few silent tears, my nose really tingled. It was close to the top, but it wasn't the tippy top (between brows) so I hope it was right. Dr. Chu said it was according to the CT. 

I think the pain was maybe from the moving of the tube/needle around in the infrazygomaticarch. It's SO small and it still feels bruised in that area. When the charge was put through, it would stop hurting and it would just make my face feel tingly. I think the pain stopping was because the tube wasn't moving any more. Plus it felt like the same kind of pain as when I had the same procedure but with Lidocaine, only it lasted a lot longer and happened more than once. Then after the pain stopped, the tingling would start.

After proper location was determined, I was given anesthesia; I think Fentanyl. The pain was immediately gone, but I did feel some double vision come on for a few minutes. Fortunately it cleared. I had that for awhile after one procedure and it is NOT fun. Just pressure after the the pain left, and shortly after that he was done. 

Now I have a feeling at some  point I fell asleep because the radiologist said something. I don't know when, but I hope it wasn't when I was needed because I actually can fall asleep while in pain as a coping mechanism. However, it felt like once they did the radio frequency part it was over. I might have dozed, though. 

After they gave me time to sort of recovery, but in the same room and only a few minutes. They took the Barbie feet out of my nose, and untaped my head. They took all the probes out and disconnected the BP cuff and pulsoxometer. They tried to help me down, but I thought I was okay and almost fell. Ha! Then they wheeled me to the recovery area, which is just a chair. I had my BP taken again and it was 80 over 36, which freaked the nurse out. She had me sit back and uncross my legs and then it went up to 100/56 which is more normal for me. At one point the heart rate alarm kept going off too but Jacquie and I had told the nurse anesthesiologist that we were marathoners, so she just let them know not to be concerned. Love that low heart rate!

So how do I feel now? Well, I've been typing this for over seven hours, but it hasn't taken this long. My fave really hurt a lot, but my head does feel better. At least right now it does. However, the other side of my head isn't very bad at all, so it might just be because we've had a nice day and tomorrow is going to be a nice day...or because I medicated as soon as I got home, and have remained thus so all afternoon. Or both. Or all. Or either. Or none.

My face is swollen on my right side and it hurts to touch. My teeth hurt because it really felt like they were being pushed out (my molars) from the inside out. It hurts to eat hard food on that side, but it isn't like I had to eat pudding. I had leftover pot roast, potatoes, and carrots for dinner but I did chew the meat on my left side. I was super tired when I got home, but I took two dogs for a 1.5 mile walk and felt a little better. I never did take a nap. Now I had HOPED to go for a run, but nope. Head hurt too much. So nothing impressive about walking the dogs to the park. 

So that was my day. It kind of sucked, but even if it only works for six months it will be worth it. I hope it does. I just want my old life back.

Tuesday, April 11, 2017

Ten Days to Relief! (ihope)

It's April 11! I can't believe it's April 11! On April 21 I get to have my first SPG High Frequency Block. For some reason I always think of a radio when I type that...like they're going to implant a radio in my brain.

Frankly, I don't know what I'm typing. I have such a bad head right now. I can hardly stand it. Ondedesteron is on board but hasn't done anything yet and I just want to die. I hope this procedure works because if it doesn't I just don't know what to do.

Why can't I just accept this is my life now and move forward? I have a Facebook friend named Rico who had an aneurysm 13 years ago. He has headaches all day every day too and he's the most pleasant man I know. Not that I'm not a nice person, but he seems like he's accepted his life and I just can't.

I was seeing a therapist for awhile and that really helped, but she moved into a different situation. If the treatment doesn't work, I'll seek out another therapist.

I'm afraid the procedure won't work. I'm also afraid it will work. I want it to work. I really do, but it will change my life in a really good way and that scares me because then I have to remember how I lived before. That's super exciting, but scary at the same time.

But I'm really afraid if I get my hopes up and it doesn't work...even typing this makes me get a huge lump in my throat, I will be devastated. If it doesn't work, I don't think there's another option and then I will be the one saying "I've been living with this pain for 13 years".

If I make it that long...and this is where I say it isn't a cry for help, and it isn't right this minute, but I don't know how I'll handle facing a lifetime of this pain. It's just been so bad lately...so constant and unrelenting.

Tuesday, April 4, 2017

What's the News?

It's been forever because it feels like there is nothing to say when all you have to say is "My head hurts, and it still hurts. Have I mentioned my head hurts?"

I could call it brain pain or headaches or migraines. Regardless...it's pain and it's a pain in the mother fucking ass!

I guess there is a new development. I am getting a new procedure on April 21 called a Sphenopaltine Ganglion (SPG) Nerve Block using high frequency nerve ablation.

I've had two procedures where they used a needle to directly apply lidocaine to my Sphenopaltine Ganglion nerve bundle. They were SO painful, but it worked to take the pain away! Unfortunately like the nasal application, it didn't last long. The first time it lasted 32 hours, which was awesome! It was supposed to last 3-6 months, though. The second time it was only a few hours. To do this, they tape my head to a table and use a CT machine to watch as the doctor inserts a needle through my cheek, under the Zygomatic arch, and up to the SPG and release Lidocaine onto it. OMG it hurts SO bad!!

So that's basically what they'll do on the 21st, but only on one side. The other two procedures were to determine if the SPG is indeed where my pain is coming from. Since the Lidocaine worked, that tells us that we are on target. They will put a larger hollow needle through (I feel woozy just thinking about it) and then put a probe through and apply a high frequency to the nerves to damage them. The outcome should be that the nerve then shrivels up. It should regenerate as a healthy nerve that doesn't shoot off for no reason. If it still shoots off, I still should have at least 6-18 months of relief.

Five weeks later, I will get the second one if the first one works. I get bilateral headaches. What's interesting is that my official diagnosis is daily chronic migraine of unknown cause, but I don't think they are migraines. They have no migrainal characteristics. They are always on two sides. I don't get auras. I don't usually get sick and if I do get nausea it's due to pain level, not a migrainal misfire.

Sometimes I call them migraines just because I get tired of people thinking it's "just a headache".  There is a lady at work who I can't even mention if I'm having a bad day (mention it to her). The last few times I have, usually because she comments that I'm wearing sunglasses, she's said, "Oh yeah! I know! I have a headache too!"

Really? You know?

You have a headache too?

Do you?

DO YOU REALLY HAVE A FUCKING  24/7/365 HEADACHE YOU IGNORANT BITCH????????

Ahem.

That was with my inside voice.

Outwardly I just smiled, looked at her like, "Are you kidding me??" and walked off without saying anything.