Really quick update

On By WendyIn Advocate, Chronic Illness, Headaches5 Comments

I forgot to hit Publish, I wrote this a couple of weeks ago…or last week, I don’t remember. I’m still having a little bit of memory issues. So…her it goes.

The hospital has acted on my complaint.

The staff has had a training session on how to handle patients.

Do not assume the patient is in the wrong.

Do not ASSUME anything, UNDERSTAND what is happening then react.

Never react unless you understand.

Security should only be called when patient is a threat to themselves or others.

That is part of the training the nurses and staff on the neurology floor have now been given.

Since the hospital lost a lot of their staff due to COVID some of the training hasn’t been done. They are certified in their positions, the nurses have graduated, but they haven’t had proper training in how to handle every situation.

This was not supposed to be said to us, but the person who is monitoring complaints (and talking to S) was a nurse for 40 years, she sees how different it is since the pandemic. She is trying her best to make sure nothing like what I went through happens to another person. That’s all I wanted.

Finally it is in my records that I am deaf with cochlear implants. I thought it was in there before, so that confused me. We were told if I have to go in that hospital again I need to make sure there is a sign on the door that says “STOP patient is deaf with cochlear implants”, they all need to know I can’t hear everything that is said, sometimes I can’t hear anything that is said.

I won’t be getting ketamine any more. I’m very disheartened that it did not work. I felt like it was the last resort. I pretty much still feel that way, but I’m not giving up! I’ll keep trying, that’s all I can do. It’s very hard to live with a constant migraine, people who’ve never had one cannot understand, but they can be sympathetic and supportive. If you don’t have anyone in your life who meets those requirements I suggest you go out and find someone as fast as you can. If there’s no one at home to support you, reach out to a support group, in person or on line. If you need, contact me, there’s a tab for that at the top of the page. (note I do not accept request to post on my blog to advertise a product…) I am very happy to talk with anyone who needs support. Or just someone to vent to.

That’s all for now,

I hope you are all safe and as well as you possibly can be.

W

Muddling along

On By WendyIn Chronic Illness, Disability4 Comments

There’s really not that much to update, but I’ll try and tell you all what’s going on.

I added to our complaint about how I was treated in the hospital, I was upset when that wrote me back saying they couldn’t fine my original complaint. At least they wrote me back, perhaps I’m now in touch with people who can make a difference. It’s upsetting that I had to say I felt my disability was ignored before I got the attention of someone. Yes I am considering writing to the States Disability board who enforces the ADA (Americans with Disabilities Act) We are now in the process of writing our a letter that will be sent to the hospital and Medicare. I haven’t contacted the state about my disability being ignored before now is because Medicare often takes care of that. We will then be sending the letters by registered mail so we get a signature that it was received

This has been incredibly hard on me since I do not remember a lot of my hospital stay. I don’t remember the first time I was going to be discharged before I was ready to be. However, I do remember the next day when I was forced to be discharged before we knew how the opioid they had just given me would react with me.

Forgive me if I’m not saying all of this with the proper grammar, I’m still incredibly upset about it all. The email I received stating they had no record of my original complaint has been a huge trigger. I need to get all of this resolved. I’m trying very hard to be a good advocate for myself. People do not understand how very hard that can be.

I have felt that my migraines have been less intense. About once or twice a week I had one that is untreatable no matter how much medication I throw at it. But I’m having Yellow days most of the time. (explanation of the traffic light system for rating migraines can be found here) That’s a huge difference. I don’t know if it’s because of the reintroduction of Botox, the nerve blocks, or the increase in medications. Which ever it is, I’ll take it. I just hope it gets better and better, all Yellow and Red days is simply unbearable.

I’m having some huge cravings for sweets, I don’t normally have that. It’s weird and it’s bothering me… it freaks me out to gain weight after I lost so much. I’m trying hard to eat as healthy as I can, but it’s even harder when I’m not able to cook for myself, and I’m tasting things differently. Foods I normally love just taste weird. That can be a side effect of one of my meds, but it’s crazy that my oatmeal and butternut squash taste odd. Why can’t sweets and fried foods takes weird? I really try not to eat either of those, but lately I’m not succeeding all the time. I’m also much more constipated than before, I can’t help but this is also a side effect.

We’ve had a lot of unexpected expenses lately. Plumbing issues, needing to replace the AC in the casita. I sure am glad we have an emergency fund, but it will push back being able to get the yard landscaped, and replacing doors and blinds. That makes me a little sad, but it won’t be put off forever, and we can still get some of it done. (crossing fingers)

I should close now, my head is ramping up and I’m almost finished with this Spravato treatment.

Hope all are good out there. I’m not getting email notification when most blogs post so I need to take the time to check on you all.

Hope you are having a spooky season.

Better day, kinda.

On By WendyIn Chronic Illness, Migraines5 Comments

I had a better mental day today, physical kicked my but!

No flash backs, and was able to really sit down and talk with Stuart.

My allergies are out of control! It appears I’m now allergic to my cat. It’s so hard. I’m determined not to re-home him, but I have to find an antihistamine that works! The pharmacist told me about a prescription one, I’m going to ask my doctor.

If this doesn’t work I’ll see if I can find someone to bathe him, or shave him. Anything!!

Right now I’m spending most of my time in the casita (my studio I rarely use, but that’s a different story). I’m lucky I have somewhere to go, I have a much higher understanding and empathy for those I know with a cat allergy.

It’s late again, and I’m awake.

I’m scared.

Not the same reason, thankfully.

I’ve been having vertigo on and off all night. Waking up in the middle of the night with vertigo really sucks!

So I’m scared.

I got the latest COVID booster and my first shingles shot (I didn’t know it was a two shot vaccine… Ugh). My shingles shot side is already so sore I can barely use my arm. The other side isn’t bad at all, I feel it, but it’s minor.

Oh I did a little bit of art today, that was nice. Not finished, and I’m just covering some boxes with a mixture of torn newspaper background, with paint added in a decorative fashion. Some intuitive art.

I also sent a special complaint about the security guard. I strongly incouraged them to give their security personnel better training on how to deal with patients, especially disabled patients, with an emphasis on dealing with invisible disabilities.

I didn’t say it, but the way I worded it let them know I’m an advocate for myself and I’m not afraid to have his they deal with the ADA investigated.

I may be afraid, but I’m still strong, and brave.. even if I don’t always feel it.

I’m afraid.

On By WendyIn Chronic Illness10 Comments

I’m writing this on my phone.

It’s late.


I should be asleep, or at least trying to sleep.


Today has been just a bad day,
an emotionally turbulent day.


I’m afraid to go to sleep.


Reading hasn’t been helping.


Are you ever afraid to sleep?


I’m afraid he’ll be back.
That security guard looming over my bed,
saying things I can’t understand.
His face contorted into hatred.
It was obvious he didn’t believe me when I said I’m deaf, but I couldn’t hear him.
I found out later he said “You we’re just talking with them!”


Does me talking mean I understand their words?
Does me saying “I Do Not Understand” , mean I can hear?
I could see their actions, I commented on them, does that mean I heard them?

No!
No it does not!

For a while after I got home I had nightmares.
I was afraid to sleep.
Today my emotions were in a bad place.
I feel useless.


A vestibular migraine looming over me for a month, makes things worse.


I’m causing more issues for Stuart.


I’m overwhelmed with guilt.
I’m hurt
I’m sad.


I’ve been pushing it down, but tonight it’s back
I’m afraid


Are you ever afraid to sleep?

I’m 59 years old and I hurt all the time
For 30 days I’ve had vertigo every day.
I’m losing muscle tone
My thighs seem weak.
If I’m like this at 59, how will I be at 69?
79?
Do I even want to know?

Each night I make plans for the next day, it all rarely happens.


I’m tired.


My quality of life stinks.
It has for a very long time.


I’m so very grateful for my amazing support
I’m privileged.
So why am I so sad?
So mad!?
So scared… all the time.

Are you ever afraid your life will never get better?


Are you ever afraid?

Do I deserve to be treated the way I was at the hospital?


I’m afraid.


Please don’t say I need to do more about this.
I don’t have the energy, and I don’t know their names.
An official complaint has been made.
My only goal is to help prevent this happening to someone else.

No one deserves it!


Even me.

I’m still afraid.

Never Again! Ketamine, and hospital bullying

On By WendyIn anxiety, Chronic Illness, Health Care6 Comments

This post may contain triggers for some. It talks about bullying, hospitals, trauma. Please take care of yourself first.

This Ketamine treatment was nothing like the first one.

I will never go though this again….NEVER.

I don’t remember anything real from the time they started the infusion until shortly before we left. I hallucinated the entire time, or maybe just lost time…who knows. Yet S tells me that I seemed lucid at\times. I knew there was a chance I could have hallucinations, and dissociate…but this was beyond what I ever expected.

I’m told I was having incredible abdominal pain…this happened last time, but only on the last day, but it was shrugged off as GERD. I received Mylanta and was discharged. I ended up in the ER two days later with severe pain and diarrhea that had been happening since I got home from the hospital. I was given a CT scan and test were taken, I was told I didn’t get any of the bad bugs (like Cdiff) in the hospital but they thought I did get something there. So I was put on a liquid diet for 2 days, followed by a bland diet for another two days, I was also given Dilaudin (a synthetic opioid derived from morphine) in the ER. All of those things relieved it.

This time I had severe pain during my treatment, again waking up screaming, and vomiting this time….I remember none of this. I was given meds, I don’t know what, but it didn’t help much. Again they wanted to discharge me (more about this later). I ended up back in the ER the day after I got home. First I was given Morphine, but it made me itch so much, it’s really hard to deal with intense pain and itching at the same time. I was also given two other medications, dilaudin, and haladol. The pain was so very intense. They actually thought I had constipation with the diarrhea. What? Who’s heard of such a thing? She said it showed on the CT scan, it also showed some “irritation and inflammation”. There is some condition called called paradoxical diarrhea or overflow diarrhea. It happens when watery stool leaks out around hard stool in the rectum. Have you ever heard of such a thing? I sure hadn’t. I don’t understand that, I was having regular BMs before the diarrhea. She wanted to admit me to give me a laxative to see if it helped. I was not willing to do it. I could do laxities at home. She also suggested a bland diet. I also took a stool softener, and magnesium oxide, and have had normal BMs since. I still don’t believe I had paradoxicol diarrhea. At least that part of me is fine. I am still having some stomach pain, but nothing like I was having. I’ll discuss it with my new PCP on the 16th. I’m so grateful I was accepted by this PCP, she used to be a headache specialist at Jefferson (a very prestigious headache clinic) so she is better suited to work with my doctor at the clinic in Phoenix, so I may not have to go there to get some treatments. This office came very highly recommended to me, by another doctor of mine. I hope they really are as good as they say.

More bad stuff

Okay so that was part of the horror of the ketamine. Although some of the visions were interesting. I had to have a catheter many times. They said (according to S) they don’t like to leave it in because you are more likely to get an infection. But the visions that came with it…it’s hard to explain. One of them I saw women surrounding me in ceremonial garments. I was the center of some ceremony. It was strange, but it didn’t scare me, I felt like I was in a place of honor. Other times I did not have good visions. I I wasn’t sure what was going on, I felt violated. I still do. I had no say in what was happening, how can you not feel violated when people are sticking things up your urethra when you are out of it?

There was also a time that I thought there were two Stuarts. One was on one side of the bed, the other was on the other side. It was so strange. I told him I had to smell him to make sure he was the right Stuart. I got very agitated by the second Stuart, he didn’t smell right and was very jealous of the real S, but I had the right one there so I wasn’t scared. S told me I talked about gnomes a lot, that’s interesting, but I don’t remember it.

I’m told when I was hurting so badly I called out for my mother. She died 29 years ago. I still miss her so much. I do always wish she was here to help me through this, help us through this. I’m just so very grateful I have Stuart, and I have such good memories of my mother. I was thinking how hard my life has been, so very hard. How could I be so unlucky? Then I realized I’m one of the most lucky people in the world! I have an amazing husband to help me through this. How could I be unlucky?

I’m getting way off track, as usual, at least that was a good thing….. so let’s get back to this traumatic hospital experience.

First Discharge attempt:

The day after the ketamine was stopped I was set to go home. We were all packed and ready. I was getting in the wheelchair and then said, I don’t think I should leave with so much abdominal pain. The nurse from hell tried to force the issue, then I had a seizure. Other nurses and a doctor came in and said I wasn’t going anywhere. I don’t remember any of this. None of it. How could I have felt like I was ready to go home, with the only symptom abdominal pain, and not remember any of it? After the seizure S told them that the seizures happen when I’m under an extreme amount of stress. It hurts me that I’m having psychogenic seizures again.

Being forced to leave:

The next day they gave me Dilaudin to help with the pain. They finally listened to Stuart. Shortly after the nurse came in with my discharge papers. Stuart said he wanted for us to stay for another 30 minutes to make sure I didn’t have a reaction to the medication. We thought that was all there was to it. I was eating my lunch when suddenly the nurse from hell and an entourage of other nurses and a HUGE security guard came in to escort us out. They had “patient belongings” bags and were ready to throw my things in and forcefully make me leave. I was very concerned and agitated. I kept saying I didn’t understand, why couldn’t I finish my lunch? Why was this happening. No one would answer me, so I got a little loud, I didn’t scream or anything, I just wanted attention since I can’t hear I thought maybe I was missing something. S was busy getting our things in the suitcase so he couldn’t be that help, I doubt they would have said much for him to translate anyway. When I raised my voice the security guard came over to my bed and loomed over me, I shouted to him “I’m deaf and do not understand” it was obvious he didn’t believe me. The nurse from hell tried to touch me to get me in the wheelchair, I did forcefully tell her “Do not touch me”. I got in the chair myself. I did keep saying that I didn’t understand. While we were waiting for the car….yes they all waited to make sure we left….I turned to that nurse, she was the closest person to me…and said I wanted to see who was in charge. She said she was….she was the charge nurse, but she was far from who would be in charge. I told her I wanted to know in writing why I was being treated that way. She said, “it’s been noted”. I asked for her name and she wouldn’t give it to me. I also felt like they put people between me and Stuart so we couldn’t bond together. They rushed me out so fast I didn’t have my mask, and the charge nurse evidently didn’t have hers on since I could read her lips. I am sure that the whole process lasted more than 30 minutes, if you include the time before they came in. Why did this happen? Bullies, that’s all they are….Bullies.

I will NEVER be treated like that again! I will refuse to leave until I at least get the people’s names. We made a formal complaint, I’m sure nothing will come of it, but they can’t find out what the security guard’s name is. I don’t want anything like this to happen to anyone else.

Another strange thing, I was told that a doctor came by that morning and I told her I was ready to go home. She’s the one who ordered the Dilaudin, they finally listened to Stuart, then said I could leave. She’s my headache doctor’s partner, so I do trust her. But I don’t remember any of that. I really don’t remember anything until I was eating lunch. It’s like my brain shut down because of the pain….or the ketamine really hit me hard….I don’t know. Stuart is concerned that I don’t remember the last two days after I was off ketamine and was ready to leave. I do remember every bit of those people forcing us to leave. They didn’t even ask, they didn’t come in and say that they couldn’t allow me to stay any longer….for whatever reason…they just came in and started to pack up my stuff and forced me out.

I’m now having nightmares. It’s hard for me when I go to bed, even when I’m not sleeping, I can feel that security guard looming over me. I can feel the hate in his and the nurse from hell’s eyes This is one of the most traumatic things that have ever happened to me. I’m very afraid the seizures will become a regular occurrence again.

I’m trying so very hard to not think about the past, I know it’s over and I’m safe….but ,my body doesn’t seem to know it, it is fighting hard. I’ve lost all hope. I keep telling myself that’s not true, but it is. I was certain this treatment would help. And it did the first time, until I fell. I was outside in the sun without my hat! I had so much relief. I did feel like it was helping my migraines at first, but the trauma those people caused, I believe that negated every good that the ketamine did. Now what? The only other thing I know of is lidocaine infusions, but I don’t know if I can go back in that hospital. I’m also jumping the gun, who knows what else my doctor has up her sleeve.

I’m trying so hard to be mindful. S keeps trying to get me to stop and really breathe. That has always helped before, and it really helps him. But right now, it isn’t very helpful.

More Horror:

The night after the ER visit I started having akathesia, this happened last time too, so I was prepared with medications from my psychiatrist here. she helped before. But it didn’t work. I was pacing so much! I was anxious. I couldn’t be quiet. The only relief I seemed to get was in the bathtub. I took 7 baths in less than 18 hours. Crazy huh? My psychiatrist increased the dosage on the meds and I finally started getting back to normal. I was to take them for 3 days, when I tried to stop them, the akathisia and extreme agitation started again. So I’ve been on a lower dose since then. I sure did sleep well on those meds, too bad I don’t sleep like that all the time.

I think that’s all….I hope that’s all.

I do have another major stressor going on right now, but it’s worrying about someone else, not anything about me. Nothing I have any control over. Is there anything I have control over? Not my life, that’s for sure.

Feeling heard, and communication frustration.

On By WendyIn Chronic Illness, Migraines4 Comments

Often a person with a chronic illness goes from doctor to doctor searching for answers, help, validation. We are often simply looking to be heard. We are often dismissed, and made to feel no one will ever truly listen, and hopefully help.

On July 27th I saw the PA from my doctor’s office. She was giving me nerve blocks for my migraines. She went over everything beforehand and asked ME where I thought the blocks would help the most. She also examined me and found some very tight muscles, so she gave me blocks there too. I was so impressed. She took her time, and really listened. I did not feel rushed at all, yet they are always on time for my appointment.

I now have a Botox treatment set up, and my next nerve blocks scheduled.

My insurance still hasn’t approved my inpatient stay. Hopefully it will be soon. Of course all my appointments may need to be shuffled if I get approval. They call and say, “can you come now?”. We’re 2.5 – 3 hours away, with pets, it’s hard to drop everything and get going. Luckily we found another pet sitter and our dog really likes her! She doesn’t like anyone (except my sister, but she 3000 miles away),we are so relieved. It really makes things easier.

We spent the night in Phoenix and were able to spend time with Dad’s (Stuart’s father’s) cousin. She is such a doll. She’s visiting her best friend since grade school, amazing right?!, she lives near Phoenix so it was easy to squeeze in a visit while we were there.. Both of those women are amazing people. I so enjoy every visit we have with them.

UPDATE!

Found out day before yesterday that insurance approved the ketamine treatment on the 18th of last month! They simply didn’t tell anyone! How can insurance companies get away with this? They did send us a letter saying they had approved a treatment, but didn’t say what it was. We thought it was for the nerve blocks. When the hospital asked them to fax the approval, they sent the letter they sent to us! What the heck? At least they found that it had a code on it so they understood it.

Stuart has been playing phone tag with the hospital because he got a message that I need a blood test and EKG. I didn’t’ last time, I think they did it when I got there. Still waiting to find out what that’s about, and if I need it beforehand, where do I get it? I really don’t want to go to Phoenix for it.

I also hurt my hip, the one that was replaced 7 years ago, I was very afraid that it would interfere with my trip to the hospital since I move a lot during the treatment. I know wouldn’t be able to be mindful of how I’m moving my hip during it, but suddenly it seems to be much better. Night before last I moved a certain way and my hip popped, it was very intense pain that caused a very sharp pain down my leg, today I’m moving better and feeling little to no pain from my hip. hmmm, could that pop have been a good thing? I’m just thrilled I don’t feel I need to see an orthopedist before going inpatient for the ketamine treatment.

ANOTHER UPATED

Well if I’d actually publish this post I wouldn’t keep getting new things pop up….but then again, probably not.

I am going to Barrow on Wednesday, August 10th, to get the EKG and blood work. Yes this is a new requirement…who knows why. We’re hoping I can be admitted the next day so we can just spend the night in Phoenix and not have to return to Tucson. Cross fingers and toes.

Now I’m going to actually close this post and publish it.

I’m in a lot of pain right now despite taking meds, but they are making me sleepy so I think a nap my be in my immediate future.

Round two anyone?

On By WendyIn Chronic Illness, Headaches, Migraines7 Comments

Not edited, stream of thought:

I’ve been away for quite some time, I hope no one has missed me too much. Or maybe I do, I dunno, I kinda like the idea that someone out there missed me….oh that sounds weird, like I think no one cares, I know people care I’m being weird. Speaking of weird…

After the amazing results from the Ketamine treatment I had in early may, it ended when I had two falls and a concussion. Yikes!

Since May 31st I’ve, once again, had a constant migraine. This one is very high all the time. I’ve had no respite at all.

,

Okay, did they change the way you post photos into WordPress…OMG that was hard and now I can’t move it!…..anyway, this is what happened: Damn I look old, and really messed up. Whew that had to hurt…oh wait I know it hurt, it happened to ME! So surreal.

I went for a walk, and fell, flat on my face, didn’t even get my hands out to brace myself. It felt as if someone had pushed me from behind. (uh oh…Meniere’s drop attack..damn) Stuart and his father were in a restaurant near by (their conversation got boring, hence the walk) I came back to the restaurant and every head turned to me with, what I can only describe as, fear and fasciation. I walked over to our table and Dad looked white, Stuart turned and saw me and jumped to his feet very alarmed. The waitstaff swooped me up and took me to the bathroom to try and clean me up some. Then I saw myself. Blood covered my face, I shouldn’t have been surprised, I had tried to call Stuart when I fell, but smart phones don’t work when they have blood on them. My lip was severely swollen and there was a big gash in my forehead. They tried to clean me up the best they could, but they couldn’t fix it. I ended up in the ER, luckily one that wasn’t busy. They cleaned me up better and glued my head back together. My tooth tried to come through my lip, but since it didn’t go all the way through there isn’t much they can do, getting stitches there has too much of an infection risk. It’s all okay now, I still have a ridge inside my lip, probably a scar I’ll always have, and I have a cute little scar on my forehead. Nothing broken…not even my glasses…which is really weird, they didn’t even fall off or get very scratched. Really, Really,Weird. I had a scrape on my leg, didn’t bleed really, yet I can still see it….again…weird.

I saw my doctor week JULY 6TH!! and I’ll be going back into the hospital for another round of Ketamine soon. (If insurance ever gets their act together!) I’m also getting trigger point injections where the concussion was, and nerve blocks in the occipital region on July 27th. She also increased preventative meds that I’m already on, and discontinued some acute medications because they weren’t working. I feel like a zombie every morning when I take my meds, yet the pain is still very real! I’m also getting a migraine cocktail infusion every week now. It doesn’t last long, and it’s so hard to find a vein on me I have questioned if it’s worth it, but she just changed the orders up on that too, so we’ll see. One person is wonderful at getting my veins, another hurts like H and I told him to stop, and another is decent, but it still hurts and I always have a big bruise later. As long as I get a few hours of relief, I’ll continue to do it.

Just because I’m going through all this doesn’t mean I’m not here for my friends. Anytime anyone needs to talk, reach out. It makes me feel like people still think I’m worthy, instead of someone you don’t “bother” because they are ill. I remember family members doing that to my mom, and it broke her heart. I’m still a person, I can still be a friend. I might not be able to respond immediately, but I will. I don’t like feeling like I’m not a good friend anymore. I know there are a few people who will think I’m talking to them directly, but I’m not, this is aimed at anyone who feels they can’t “bother” me. I do apologize for not reaching out more. Emailing…texting…I haven’t been very good at that. I’ll try and be better. I really do value my friendships.

If there’s anyone out there who has had, is having, or going to have ketamine for their migraines, I’d like to hear from you. I’d like to compare notes at the very least.

Right now I’m in a Spravato treatment. You may remember that Spravato is a treatment for major depression disorder, and it’s esketamine. Interesting all the things this “street” drug (or part of it) can do.

I’ll also try and write more here, it does help me, whey don’t I do it? I dunno. I’m basically staying in the dark, watching mind numbing TV (the brightness has been turned down). I’m trying to do more, even if it is a struggle…pushing myself through…way past the point of using all my spoons.

My First Ketamine Treatment for Migraine.

On By WendyIn Chronic Illness6 Comments

The most important thing I can tell you about my ketamine treatment is that it worked!

I was in the hospital from Tuesday – Friday,(May 3-6) not as long as I expected after reading about someone else’s experience. She said she’s in about 11 days, I don’t remember if that was just her first time or if she’s in that long every time. I just wonder why she’s in so long. Perhaps they ramp up and taper down her dosage slower than mine

I was given at least three neurological exams, there could have been more, I don’t remember..

They warn you that you can loose time and place, that you could hallucinate….

When they started the treatment on Friday night I told S that I wasn’t sure about this, because I felt nothing, and my head hurt.. What was really happening was they were increasing the dose very slowly. By midday the next day I was having double vision, which wasn’t bad, if I closed one eye I could see just fine. Then I was all giggly for a bit, I entertained the staff, and then I slept, a lot!

Every time I woke up I asked S if we’d changed rooms. I kept feeling like they were taking me places but I always woke up in the same place, weird huh? I was always hungry when I’d wake up, so it must not have curbed my appetite, however I admit I didn’t eat a lot there, I was really hungry when I’d wake but after eating just a little I didn’t want any more. Too bad that didn’t stay!

Once a nurse, or doctor…I don’t remember which, asked me what my pain level was and I answered, “what’s pain?” So she touched my forehead and said, “Does it hurt in here?” I can’t remember my answer. Heck I don’t think I’d remember this at all if S hadn’t told me.

When I read the other person’s experience with this, she said to make sure you stretch and walk the halls with help each day, she even said she would do some yoga. I could barely walk to the bathroom, with S helping me. The day before the higher dose I did some bed yoga and meditated….but then it kicked in. I started to feel really high. I wasn’t scared, that may be because I knew a little of what to expect since I have Spravato (esketamine) every week. Spravato isn’t anything like this, but it got me used to feeling wonky. I learned early on with Spravato to not fight the feeling, just relax and go with it. So that’s what I did with this, I can honestly say this treatment was very easy, and very well monitored. I liked that although I was hooked up to a heart and oxygen monitor, the machine for it was in a different room. I never heard a beep, if you’ve ever been in the hospital you know what I’m talking about, I think that would have driven me crazy. Of course I did get my BP monitored, but after the first day they didn’t do it much. At least I don’t remember if they did or not. I know when it first started they had to check my BP every 30 minutes, then she left me alone for 6 hours. My mind was racing so much I couldn’t sleep, so I read. Reading was so much fun for me there. (Luckily I can blow the words up big on my Kindle so I could still read.)

The one really cool thing I remember is reading. I was reading a book that has a lot of moodiness to it. It often took place outside. When I was reading I was transported to the area. Not as a character, but all around my Kindle and throughout the room I felt like I was in the place I was reading about. I actually miss that part, it was just so cool, like visiting a different land.

Most of the time I slept. It was a great time to catch up on some serious Zzzzzzs. And Stuart was able to work right there, he got in a lot of work when I was zonked out. We thought they’d kick him out after visiting hours, but nope. He stayed there every night. Really we wasted money on a hotel room, we only slept there the night I got discharged.

Okay funny thing, I wrote this right after I got home. but I forgot to hit publish, so I can update you now (May 24) that my migraines are So Much Better! Today I woke with one that was a bit higher than they’ve been lately, but I treated it and now I’m fine. I am in the middle of a Spravato treatment, so I haven’t really read over this or edited it, so it might be weird. a bit like me.

My doctor said to treat my migraines aggressively, so when it hits a 5 I take meds. (before my treatment I was always an 8 or greater), I a variety of different medications so even if I have a migraine start every day I always have something I can take. There’s only one medication that I take that can cause medication overuse headaches, so I only use that twice a week (if needed. So far I’ve only used that medication (Migranal, a DHE nasal spray) once since I’ve been back. It was the only medication that would help my very severe headaches, even then I had to take it with another medication (Keterolac). I guess that’s two medications that can cause medication over use headaches, but I always use them together.

I’m so thrilled that I am so much better. I’ve actually been opening the curtains in my house, I no longer have to live in the dark!!

I don’t know how long this treatment will last,, for some 3 months, for others a year. I’m hoping I’m one of the year, or longer, people. I’m very lucky that I found a place that does this treatment, there are very few places that do. Jefferson Hospital in Pennsylvania was one of the first to do it, they’ve done a lot of research on it.

My doctor works at the Lewis Headache Clinic at Barrow Neurological Institute in St Joseph’s hospital in Phoenix Arizona.

Overall I am very happy I went through this treatment, and I’m over the moon that I now have a doctor who is so knowledgeable and cares, and she understands complex cases. S picked on her because she said I am complex, so she changed what she said to say, “No, She’s not complex, her symptoms are” I think that’s the way we should always thing of it. We are not our symptoms!!

With that I’ll close today.

If anyone reads this who has had Ketamine treatments, or are thinking of it, please comment or contact me. I’d really like to compare experiences, and feelings.

If you are interested in reading about another person’s experience this is what I’ve been reading https://migraine.com/blog/headache-camp-round-2

Ketamine – hope for my migraine

On By WendyIn Chronic Illness, Migraines7 Comments

I have hope.

I’m going inpatient to have ketamine treatment for my refractory chronic migraine in the near future, just waiting on insurance approval. It takes longer for me to get approval because I have two insurances. (private from hubby’s work and Medicare). Luckily after approval this hospital trip shouldn’t cost much if anything. I’m so very lucky to have this, it breaks my hears so many do not have insurance, it is inexcusable for people in this country to go without needed healthcare. But that is not what I’m here for today.

If you have been following my blog for a while you know that I am already using Spravato (esketamine) for medication resistant depression. Here’s an interesting article about that: https://mindbody-therapeutics.com/whats-the-difference-between-ketamine-and-esketamine/

You can read about Ketamine use for refractory migraine in this Healthline article.. and here is a post written by a person who had Ketamine treatment for her refractory chronic migraine. Headache Camp 2. It’s a very good read.

I don’t really have much more to say right now. Head is pounding and I need to rest my eyes.

As soon as I get my treatment I’ll write more about it.

Please know you are all in my heart, even if I’m not in contact as much as I’d like.

Yes, you can have a migraine for over 2 years.

On By WendyIn Chronic Illness7 Comments

I haven’t been here in a long time, the pain hasn’t allowed it. It was much easier to blog when I was just dealing with Meniere’s, at least I had breaks. Yes, I had migraines then, but not like this. Nothing like this. And I’m not dismissing Meniere’s, it has been hell. I’m so very grateful that it’s soooo much better even the recent spell I had was nothing like before. I rarely have full rotational vertigo. I do get the vertigo that feels like you are moving and you aren’t, kind of like walking on a boat, but there’s no boat, no water. Occasionally I’ll get the drops, as I call it; it feels as if I stepped into an open elevator shaft and just keep falling. Luckily, that doesn’t last too long. I just hug the floor and keep chanting “I’m not falling”.

I veered off course there a bit. This post was supposed to be an update on my migraine situation, and just life in general.

Migraines have been extremely high. My number scale has completely changed, I didn’t realize that migraine pain could get as high as it has. I also don’t think I really understood fatigue until recently. I am so tired all the time. I fall asleep during the day. When I walk, I feel like I have to push through the air, as if the air was partially solid. That sounds weird, but that’s what it’s like. I fought it for a while, but lately I just sleep when I can; if I’m sleeping I’m not aware of the pain (most of the time).

My doctor called in a “migraine cocktail”, I have to go to an infusion clinic to get it on Friday. It can’t be soon enough for me. I don’t know what’s in it, I guess I’ll find out once I’m there. Maybe it will work, I’ve had migraine cocktails before, but different places combine different drugs and call it the same thing. If it doesn’t work, I hope they can admit me and do something to break this cycle, it’s been over two years now. If it breaks then maybe the preventatives will work, I don’t think they can really do their job when you don’t have a break. Maybe that’s not true, but it’s my belief.

Dad is doing better. I don’t know it I wrote about the bleed he had in his stomach. They put him on blood thinners because of his heart, then he had the bleed and ended up in the hospital for about a week. He still looks pale to me, he is still anemic. He hasn’t eaten red meat in many years, not the doctors told him to eat it. It’s quite funny to me, he stopped eating it because of his heart, not he needs to eat it. If he’d eat spinach and legumes he’d get more iron than eating red meat, but who listens to me? Next week he gets a device called The Watchman inserted in his heart, it stops blood clots from forming in the heart so he can get off blood thinners.

Well the computer is getting to me, so I will close for now.

I want to apologize to everyone who has emailed or texted me, I just haven’t felt up to answering a lot of things. I also haven’t felt up to looking at and reading blogs, some I have read, but I haven’t been able to comment. Being on the computer for long is crippling.

So I will sign off for now.

Hopefully I can come back soon.