I know my last post was a bit bleak, but things are getting better, I think.
I still have this dang migraine with no relief in sight, but I haven’t given up hope. My useless stay in the hospital and the indifference my migraine doctor showed about the akathisia has lit a fire under me to find a new headache specialist, which is much harder than you might think.
Luckily the medication that my PCP sent and the medication that my psychiatrist gave me have mostly taken away the akathisia. I still feel a bit antsy and my anxiety is higher, but I don’t HAVE to move all the time. I’m amazed the akathisia was so bad and has lasted so long from 3 doses of Compazine, I’m so grateful for my PCP and psychiatrist for helping me. My PCP even offered to call my migraine doctor to stress how important this was. My migraine doctor did call, after I sent a message to her about how unacceptable it was that she hadn’t gotten in touch with me. When she called she had to talk to Stuart, of course, and said she was out the office on Monday (in my message I told her that another doctor in her practice should have been covering her for her if she was out of the office. I also told her how my other doctors had helped), and said he had been researching how to help. Really? When Stuart first called her we gave her the name of one of the drugs that help with akathisia, so she already had that information. I got it after a quick Google search. It sure didn’t take me THREE days to get it.
Now I have to not only search for a new headache specialist, but I also have to look for a new PCP because mine is moving next month. Hopefully, this will be an easy process, and I’ll find some great doctors. I know finding a new headache specialist is going to be hard, there are only around 500 in the country. I don’t like the idea of having to travel 100+miles to see a doctor, but I may have no choice.
One thing that came from this, I’m really proud of how I advocated for myself while I was in the hospital and for messaging my doctor about how unacceptable her actions (or inactions) were. Since I lost my hearing it has been very hard for me to do that, but I made sure in the hospital when a nurse and tech ignored the fact that I have hearing loss, that they understood what they were doing wrong. Hopefully they will change their actions in the future.
One of the medications my doctors gave me for the akathisia makes me so stupid. I am forgetting everything! I can’t remember what I was talking about in the middle of talking! Right in the middle of a sentence I’ll look at Stuart and say, “What was I talking about?” It has been very confusing, luckily it will go away once I’m off the medication. I cut it down from 2 pills a day to 1 a day since my symptoms are so much better, and the confusion is much better all ready.
I don’t remember what else I was going to write, so I’ll close for now.
How is everyone holding up? Have you known anyone personally who has been infected with COVID-19? Do you happen to know a good headache specialist in Tucson? hahaha
Another day, another migraine day. It’s the way it’s been for over 6 months now, and it’s been getting worse. How does 6 months of migraine get worse? The severity has been worse….much worse.
The new way to log your migraines now is with the “traffic light” system. With a GREEN migraine, yes you have pain and symptoms but you can still do what you need to do. YELLOW means you have limitations as to what you can do. RED means it stops you. You can’t do anything else buy exist with it.
I saw my migraine doctor virtually on Friday, Yes the same doctor who said she can’t do anything else for me and wants me to go to San Diego for treatment, she didn’t mention this during this last appointment. She saw how many RED days (17 in October) I’ve had this past few months and asked if I thought she should admit me for treatment. I reluctantly agreed. I really wish I hadn’t.
I arrived at the hospital just as shifts were changing. It was confusing and very overwhelming. The pain was high and because of COVID-19 everyone has to wear a mask which means I can’t see their face to read lips, it was horrible I was so glad that Stuart was able to stay longer than they said he would be able to. He answered questions for me, which is really hard on me. I’m the patient. I’m the one who needs to know things, but I couldn’t hear well enough to understand what was going on a lot of the time.
The migraine doctor gave orders for me to get DHE shots, only. She didn’t prescribe anything else. I could do that at home! I expected a
DHE (Dihyrdoergotamine) is given with an antiemetic, so you won’t get nauseous. They gave me compazine instead of promethazine (what I normally take). Compazine isn’t just an antiemetic it’s also an antipsychotic. Antipsychotics can cause akathisia. (a state of agitation, distress, and restlessness, you feel like you have to move ALL THE TIME) You may remember a few years ago when I took Latuda I had a terrible time with akathisia. Now if I take any antipsychotic I get akathisia. I am having a helluva time. I cannot be still. On top of it all, I’m having PTSD because of my past experience with this. I can’t do this much longer. I don’t know what to do.
We called my migraine doctor on Monday morning. Stuart talked to the triage nurse and she said she’d send the message to the doctor “Top Priority”. My doctor didn’t call back until today, it’s Wednesday. So I’ve had akathisia since Saturday!! We called my PCP after hours yesterday and Stuart talked with the doctor on call, he called in something that is supposed to help. I’ve had two doses so far and I’m still moving. I
t’s hard to sit still and write this. I’ve started it over many times over the last few days. I have a horrible migraine right now, I can’t walk around with this pounding in my head. I feel like I’m being tortured. I NEED to MOVE, but I can’t because the pain gets worse and I’m dizzy. Stuart is calling my psychiatrist to see what she suggest since she is more used to this class of drugs. I think the drug the doctor put me on last night might be working a little, but with this SEVERE migraine pain I can’t move as much I as NEED to because it makes the pain so much worse. It really is torture.
Cross fingers for me that this medication works. I can’t write any more. I’ll be back after I feel better. xoxo w
It’s been so long since I posted I’m sure you all thought I was gone for good. Unfortunately this has to be a very short post.
Presently I’m in a lot of pain all the time. I still have that intractable migraine I’ve had since late April, luckily it varies in intensity, often having much lower pain days. However, there are days it is absolutely excruciating. That isn’t the worst thing I’m having to deal with right now, I’m also having very severe nerve pain across my shoulder, down my arms and the worst is my hands. It’s better when I’m lying flat with my arms at my sides, but I can’t do that all the time. I’m getting a CT scan soon to see if the nerves are impinged in my neck, if so the pain doctor will give me an epidural to help. It hurts so much I have to stop posting this every few seconds just so I can tolerate it a little.
On top of it all I’ve had a severe rash for over a month. The doctors aren’t sure what it is. It is incredibly itchy, it is torture. My allergist thinks it’s the rash you get when you are Celiac and got gluten, dermatitis herpaformis. I had a biopsy last Thursday to hopefully get an answers.
I think I’m a pretty strong person. After all I’ve been dealing with Meniere’s for MANY years, and I broke my neck in 1992. I’m not a stranger to healty adversities. But I have to admit, this is really getting to me. It’s just so much on top of another. It hasn’t just been a straw that broke this camel’s back, I was hit bye an anvil! I’m so grateful my antidepressant (esketamine) has been working, or I’d be worse than I am now, and right now I feel like blowing my head off.
Now I have to close, I simply can’t type any longer, but I have so much more to say. Hopefully I can post again soon.
Last I was here, a loooong time ago, I mentioned all the new things I’m trying, or would be trying. Well, nothing is working to get rid of this migraine. Some of the devices (Nerivio and Ceflay) help reduce it so I am somewhat able to do things on better days, but they never take it away.
I had my Vyepti infusion on the 26th, I should have seen progress within the first week, unfortunately there has been no change. I still have this migraine I’ve had for MONTHS now. Some days it’s a little better, many days I just want to rip my head off. The pain really gets to you, especially when it’s accompanied by other symptoms that aren’t so pleasant. The light sensitivity is especially hard for me, I feel like I’m living in the dark all the time, if I’m not in the dark I’m wishing I was. I live in the desert, it’s friggin’ bright here! And the heat! Last two months have been the hottest on record, thankfully it’s starting to cool down a bit, we’ve had some days that have been in the 80’s this week. Yay! I’m finding that bright light and heat are a trigger for me. Or maybe it’s just because I have a migraine that WILL NOT STOP!
So I wrote my neurologist (who is a headache specialist) and asked about two things. I wanted to know if I haven’t seen results from the Vyepti by now would it be worth trying the higher dose. I also asked about a new symptom (I’m having some weird headache pain when I turn over in bed at night my head will suddenly explode in severe pain. It feels a lot like when I was having Idiopatic Intracranial Hypertension, but I’m not getting symptoms when I’m horizontal or vertical. (normally when you have intracranial hypertension the pain is much worse when you are lying down and relieved when you sit up, if your cerebral spinal fluid is low then you have pain when you are up and not when you lie down). In closing I asked her if she had any recommendations.
I received an answer that was disturbing.
"1. so any new headache as you might imagine I cannot assess by email. I would need to see you in person to really thoroughly discuss and evaluate. We can set an appointment but I am taking off a week at the end of the month and have surgery so my schedule is a little bit messed up 2. We can certainly try the 300 mg however it is not covered by any insurance and statistically it was not that much better than 100 mg so unfortunately it would probably be a cash pay situation which I would not suggest. However overall I would have expected some benefit by now. 3. Next option would be to get another opinion unfortunately best next opinion in my opinion would be in San Diego"
My response to that, which I haven’t sent, is 1. I already have an appointment set up for October 7th, I doubt I can get in before then; even when she doesn’t have all these things it’s impossible to get in to see her in a timely manner. I sure hope this new headache isn’t anything serious. 2. Well no I don’t want to try the higher dose under those circumstances. and 3. Well it’s obvious I’m beyond her capabilities. I understand how frustrated she may be but, San Diego?!?! That is over 6 hours away from here! I do not understand why there isn’t anything at Mayo, it’s just a couple of hours from here. I am willing to go anywhere but not when my husband doesn’t have a job, and often insurance companies won’t pay for treatment out of state unless it’s an emergency. I tried to go to a doctor in San Diego before and my insurance would not approve it. Perhaps if my doctor here is sending me it would be different? Who knows, my insurance can take months to decide things anyway.
Stuart still doesn’t have employment. He did have a very encouraging interview, so we are hopeful, but who knows. It’s a big pay cut if he gets it, but it’s much better than nothing., and it’s easier to look for a job when you have one. We are doing okay financially, but going to San Diego right now isn’t possible, and when he gets a new job I can’t ask him to take time off to cart me to a different state for treatment. I’m hoping when he gets a new job that we have better insurance. The one we have now is a pain to deal with. It was much easier with Blue Cross. Not that any insurance company is great. I’m so grateful I have Medicare to supplement my private insurance.
I’m so discouraged. It seems like any treatment I’ve gotten for my pain hasn’t worked. My pain management doctor tried injections in my neck and it didn’t work. I can’t take most things they give people for pain. I can’t take opioids, they make me itch like crazy! I can’t take NSAIDS because they eat up my stomach. I started a new medication, Low Dose Naltrexon. With this medication I probably won’t see any effect for months. We’ll see, but after everything, I don’t have a lot of hope. (this is the same medication they use to help with opioid addiction, but at a much higher dose. You can read more about LDN on the LDN Research Trust site.
I realized the other day just how long I’ve been dealing with being sick. I’ve basically been sick most of my life, but things got much worse in 2001, that’s when the Meniere’s disease started getting worse and basically consumed my life. In 2008 I stated seeing new doctors at Duke and they told me I was disabled, from both the Meniere’s and my chronic migraines. It took me until 2015 to accept that and actually file for disability. I just realized though how many treatments I’ve tried to help me, and how long of a fight it has been. 19 years I’ve been dealing with being severely chronically ill. I’ve been ill for basically my whole life, but it wasn’t severe until 2001, it was at that time that I had to stop working full time, it wasn’t long after that that I had to quit working all together. I’m so extremely lucky that I was able to not work.
I’m still trying a few things, I’m seeing an allergist next week, maybe some of my migraines are coming from that. Stuart is going to call the doctor in San Diego and see if they have virtual visits, how the insurance works, how they treat intractable migraines, and if there is a patient portal or email so I can communicate with them directly. Then he is going to call Mayo with the same questions and see how different it is.
This is getting long and I feel like I’m just whining. I don’t mean to be. I realize that when you have a chronic illness you end up having to grieve over and over, every time there is a loss. Having my doctor tell me she can’t help is a huge thing I have to accept. I have to accept that no one may be able to help. Right now I’m just trying to survive with a status migraine (formerly called an intractable migraine) and increased Meniere’s attacks (a lot more vertigo, hearing changes, even with my cochlear implants, and the feeling of fullness in my ears.
I can’t believe it’s been a MONTH since I posted! The last time I posted I was having a very hard night, thank you all for supporting me and caring, it means the world, really.
I saw my neurologist/headache specialist a few weeks ago and we came up with a new treatment plan for my migraines. First I went in and had an occipital block on both sides, unfortunately it didn’t help. I was very hopeful it would since I had an occipital block on the right side in December and it seemed to help. That was disappointing.
I’ve tried one the new migraine medications for acute attacks, Ubrevly, and it helped as long as I took it early, if the pain is too far gone it didn’t help. So now I’m waiting on insurance approval to get a prescription for it.
Almost every rescue medication for the treatment of an acute migraine only works well if you take it within the first 30 minutes of an attack. When you have a status migraine, it doesn’t go away, so there is no way to catch it in the first 30 minutes. The only thing I can do is use it when the pain starts to increases when having a lower pain day, unfortunately that doesn’t always work.
After I get insurance approval I will be starting Vyepti, it is a CGRP blocker given by IV. Unlike the CGRP drugs that you take by shot every month (Aimovig, Anjovy, and Emgality) you may see a difference within the first week or so, instead of the months it takes with the aforementioned medications. I would get the IV treatment every 3 months, instead of giving myself a shot every month. I’m really hoping this will be a good preventative for me, but I’m afraid it won’t work since neither Emgality nor Aimovig worked.
I have been using the Nerivio device and it does help some, but it is another treatment that must be used in the first 30 minutes of an attack, so I’m only getting partial relief. From the Nerivio website: “Nerivio is a wireless non-invasive remote electrical stimulation wearable applied to the upper arm at the onset of migraine headache or aura. Nerivio induces an inherent pain inhibition brain mechanism, resulting in clinically significant pain relief. Nerivio is safe and well-tolerated.” (I plan to write a review of the Nerivio soon, I’ll give more information at that time. If you’d like to learn more about it check out their website here.
Just yesterday I received the Cefaly device. As described on their site, “Cefaly is an External Trigeminal Nerve Stimulation device (e-TNS) for migraine treatment. A self-adhesive electrode is placed on the forehead and the Cefaly device is magnetically connected to this electrode.” I’ve only used it twice so far and it helped. I’m actually feeling better today than I have in a long time. There are 3 different Cefaly devices, one is for the treatment of Acute Migraines, one is for prevention, and one is dual, it does both. I have the Dual Cefaly device. I’ve only used it in the Accute mode so far, hopefully I will be able to use it as a preventative once this status migraine is gone. I will also do a review on the Cefaly after I use it for a while so I can give more information. You can read more about the Cefaly device on their website.
I was so surprised and pleased when I wrote to my doctor and told her that the occipital blocks hadn’t worked and she wrote me back and said she was sorry she didn’t know how to help break this cycle. She is normally very abrasive to me when I contact her outside or an appointment. It’s like she has been two different people, one in the office, and one in the portal. She surprised me, in a good way. I do think she cares, I just think she has too many patients, and doesn’t know how to deal with patients when they are not responding to treatment. Stuart contacted another migraine specialist here, but she isn’t taking new patients for the next 6 months because a colleague is out and she is covering for both of them. I’ll make that decision as time goes on.
I’m so tried of being in pain and having severe light sensitivity. Which reminds me, I also got the Allay lamp. This light helps with light sensitivity. I’ll be reviewing this lamp soon, in the meantime you can read more about it here.
All of the devices mentioned here have some pros and cons, I’ll address those more in my follow-up posts reviewing them. I’m so lucky that I can try these devices, thanks to my wonderful father-in-law’s birthday gift. Since Stuart was laid off I wouldn’t have felt comfortable getting these devices if Dad hadn’t given me that money.
What’s the cost of these devices? The Nerivio is $99 per month for 12 uses, you get a new one each time you refill. The Ceflay is a one time cost for the device, it varies depending on which device you get, but the electrodes do need to be replaced regularly. The Allay lamp is a one time cost of $149 at the time of this blog post.
I purchased all of these devices with my own money, I am not an affiliate and have not been asked to review these items, nor have I received anything from the manufacturers.
It’s 1:29am and I can’t sleep. I hurt all over, and I’ve been having vertigo and migraines with all the symptoms that go with it.
I’m posting from my phone so who knows how this will turn out. I doubt I’ll be able to edit it very well. I apologise for errors ahead of time.
It’s been over 2 months now since Stuart got laid off, I’m not tired of him, but I do miss my private time. However, I’ve been having such an increase in symptoms it’s probably best that I’m not alone all that much.
I’m tired. So very tired.
I’ve had a non-stop migraine for almost two months now and I, at least partially, blame my doctor. I had a tele-health appointment with her the beginning of May, right when we were increasing my Spravato treatments back up to two a week and I had every reason to believe that my migraines would get better again. They didn’t, they got worse, and I have no rescue medication that works. I got in touch with her less than two weeks after my appointment to ask for help and she said I need another appointment, so I’ve been waiting two month! The soonest they could get me in was July 17th. I’m finally going to see her next Friday. Now I have a Status Migraine, that’s a bitch to treat. I don’t know if this would have happened anyway, but I feel if I’m in this kind of situation she needs to take care of her patient, so I’m searching for a new doctor. I’m tired of her never being available when I need her.
I had the freakiest, thing happen to me earlier. I was sitting on the toilet and it felt like the toilet started moving under me. Normally when I have vertigo it feels like I’m moving, or the whole room is swaying/rocking..ect. it has never felt like the seat under me is wiggling. Soon I did feel like I was moving, well, it felt like my brain was. It still does just a little, much more if I move my head. I’m so grateful I have an amazing husband who will help me off the toilet and to the bed when things like this happen.
When I got to the bed I could literally feel my brain trying to spin in my head. My eyes weren’t all the way spinning, my vision was a little off, but not like it can be. I rarely have that sensation any more, thank goodness, it’s really hard not to throw up when you see the world spinning around you. It’s hard enough as it is. Right now, When I move my head it feel as if my brain rotates and moves around in my head. My internal gyroscope doesn’t work. My vision spins for a few seconds, and I can feel bile coming up my throat. The only hope for sleep is to lie perfectly still and hope I don’t turn over in my sleep until this has passed.
Now it’s after 2am, I don’t know if the pain will allow me to sleep, but I’m going to try.
I’ve started countless posts but, like so much in life now, I haven’t finished any. Do I write about me? How my treatments aren’t working as well as they were in the beginning? How my migraines and vertigo have once again taken over my life? or do I write about the travesties that are going on in this country? I’ve never used my blog as a political voice, I never want anyone to feel excluded or uncomfortable here, but I also feel so compelled to shout from the rooftops that I demand change! I was at the point recently that I simply no longer wanted to live in a world where people treated each other the way we do here. On Juneteenth we celebrated the 155th anniversary of the freedom of the last slaves in the United States. 155 years and racism is still rampant. Our leaders should be bringing us together, instead there is fuel being thrown on the fires.
It doesn’t help that each day I look outside and literally see fire. Normally when I need to escape from the stress of the world I retreat to nature, it calms me, but where I live we are in the midst of a natural disaster. A fire, named The Bighorn Fire, started by lightening on June 5th in the Catalina Mountains surrounding Tucson has burned over 58,500 acres so far and it’s 19% contained. We have an air quality advisory because of the smoke. The masks might help in more ways than one huh?
Speaking of masks, our mayor has issued an ordinance requiring everyone over the age of two to wear a mask when in public (there are a few exemptions) if you do not wear a mask you can be fined or be required to do community service. This is in response to the extreme jump in the number of COVID-19 cases Arizona has been experiencing since we reopened. I applaud her bravery for this, I wish our state, and national, leaders would take such an initiative. I feel it’s my Civic and Human duty to wear a mask. I wear a mask not to protect ME. I wear a mask to protect YOU! Is this political? I don’t think so. This is a health issue. We need to take care of each other. Wearing a mask is to prevent the spread of the virus when you are asymptomatic. Be kind to your fellow human, wear a mask. The life you save may be someone you love.
I think about being here, and talking with you, my friends. I think about sharing my thoughts, my fears, my pain, my dreams. June is Migraine and Headache Awareness Month. Yesterday was Shades for Migraines Day. I was so proud of myself that I at least got a post on Facebook and Instagram with a photo of me and Stuart in our “Shades”, but I had a lot of post planned for this month, they didn’t happen. So many other things happened this month. My migraines are back to being daily. I haven’t had a break in days other than the few hours I get when I go in for treatment, but it no longer last. I still have lots to say on this subject and just because the month is going to end doesn’t mean I’m going to stop being an advocate. I will be posting much more about migraine. I have a lot of information to share, a lot of promise for many people, a lot of hope. Oh, and I will be seeing my doctor in about 3 weeks, so cross your fingers we can get some kind of rescue medication for me. As I said a lot of hope out there. And that’s how I will close for the day…..with hope.
“Meditation gets you out of your thinking into the present moment by focusing your attention to your sense perceptions (sight, sound, touch, etc) with 100% focus.”
Yay. Sure. 100%. When I meditate it’s 50%-50% at best. My monkey mind swings from trees with great abandon, my thoughts rambling, rumbling and wildly roaming.
So! Why meditate?
Meditation has been rigorously scientifically studied and it’s shown to literally change the brain. A regular meditation practice helps significantly with depression and anxiety, meditation has been shown to help with anti-aging, fighting infections, contributing to a sense of control and combating feelings of loneliness.
Nearly anything can be turned into a meditative practice as long as you focus on leaving your “head” and experience the world through your senses.(Sorry – Television, video games and reading don’t count as meditation because they simply replace our own thoughts with more stimulating ones.)
Writing has been harder than normal. I think about it every day, things I want to post about that aren’t about me, then something happens in my life and, well, I just haven’t been able to get it together enough to write informative posts, I haven’t been able to write much of anything except in my gratitude journal and migraine diary. So here’s another post all about what’s going on what me, it’s a big change from a couple of months ago.
Depression ~ As you may recall, the Spravato treatments were doing amazingly well at treating my depression and migraines (depression was gone, and migraines were cut almost in half), then we cut the dose and I didn’t respond as well, so we increased it again a couple of weeks ago. My response to the increase hasn’t been as expected. I’m not feeling better. My depression isn’t as bad as it was before starting treatment, I still think I’m handling things remarkably well considering how much has been thrown at me recently, but I can’t lie and say I feel like I did. The depression isn’t gone, but it’s not all consuming, I’m very grateful for that. Unfortunately, my migraines have not responded to the treatment at all. They have increased back to almost daily, and the intensity has increased too. Most people would say, no wonder I’m more depressed, but as I noticed before, sadness and depression are different. Could this tip me into depression, or should I just be sad? Should this medication still be working as well as it was, or should I be feeling this little bit of depression? I don’t know.
Bad Trip ~ It may not matter anyway. I had a treatment on Tuesday and I had a bad reaction, or I guess you could say I had a bad “trip”. I haven’t dissociated during a treatment before. Normally, I only feel a bit drunk/high, in the first 15 minutes or so I can feel a bit more intense but I normally just go with it, I’ll relax and meditate, or I’ll giggle with Stuart, or I might even try to read, it all depends on how it makes me feel, but I always know where I am and what I’m doing and I’ve never felt bad. This last treatment was totally different! Within the first few minutes I started feeling hot. I was dizzy. I didn’t want to be touched. I felt sick. Things started to go weird. I told Stuart I was never doing this again. Suddenly I wasn’t in the room we were in. It is very hard to explain, and I can’t remember it all. I always knew Stuart was there but he didn’t always look like Stuart. I kept telling him I was dead. I wasn’t afraid of that, it was just a fact. It was the only way my mind could explain why things were do different. He asked if I was dead then how was he there, but I just kept telling him, “I’m dead”. Then I started throwing up. I knew I threw up, but I don’t remember the first time. Things started to come back and I was in the room again. I was lying on the couch and Stuart was sitting on the floor next to me, holding me and taking care of me. We kept telling each other how much we love each other during this whole thing. I always knew he would be there. It took a long time for me to totally recover. When I went home I was still very nauseous and felt awful. Stuart said I was having nystagmus during it, and I was having severe disequilibrum for a while, so we are wondering if I was having a Meniere’s attack at the same time. The way my body felt recovering was about the same, but no one knows. My doctor decided I should take a week off from treatments, so I go back on Tuesday. I’d lie if I said I’m not nervous.
PTSD ~ I fell last week. I was walking across my living room on my way out, kind of rushing, and tripped. BAM! I went down hard! We have tile floors, where I fell there is a rug, but there is no padding. It hurt so bad I thought I might have shattered my knee cap, and the pain in my artificial hip scared me, but all I did was scrape my knee really bad and I have a few bruises that are still coming up. I think the pain was increased by the fear that what happened last time Stuart was laid off was going to happen again. Last time I hurt my hip and it didn’t get better and that’s when we found out I had avascular necrosis. I ended up barely being able to walk for months before my hip replacement. Anyway, the PTSD from all that just spiraled. I was back there. I’m okay about it now, and my knee is healing. I’m being gentle with myself.
Migraines ~ When I had my virtual visit with my migraine doctor in early May I was increasing the Spravato again and thought I was doing pretty well. I don’t have a rescue medication that is working, so she gave me one of the new rescues, Ubrelvy, to try. I didn’t respond to it. I sent her a detailed message about things, and she said I need another visit. First appointment I could be squeezed into is on July 17th. So that means I go until then with NO rescue medication. I do have this new device called Nerivio, (that I planned on posting about), that is helping, but you can only use it 12 times a month and you have to catch the migraine within 30 minutes or it does not work. I’m having a lot more than 12 migraines a month, and sometimes it’s hard to tell when my migraines actually start since I have a chronic daily headache. I have gotten so used to living with that pain that I try hard to ignore it. On good days my baseline is around a 3, but recently it’s around a 5, so it’s hard to tell if that 5 is migraine starting or my baseline. I can only tell when my light and sound sensitivity gets worse, or I get nauseous…or have many of the other symptoms. If I have an aura, I can catch it, but that doesn’t happen all that often. I’m really hate that there are so few headache specialist that you can’t get in to see them when you really need it. As much as I’m thrilled that there have been a new class of migraine medications released recently, I hate there are still so few options out there. Oops, I started to jump on my soap box, hopefully I will be able to write a whole post for that! hahaha
Just Stuff~ I’m still staying home even though my state has pretty much opened up. I still go over and visit my neighbor on her patio at a safe distance. We do have dinner with Stuart’s dad once a week, I go when I’m able, always keeping social distancing. (Stuart sees him more often) We plan to do ribs and the fixin’s tomorrow. I hope I can go, or Stuart and Dad will have a lot of food. I’ve actually increased my precautions since they opened up the state, there is way too much going around. We did go for a drive through the Saguaro National Forest, that was beautiful.
So late last night I wrote this long post detailing everything (well most things) that have been happening lately, I decided that most people really don’t want/need to read all those details so let me just sum it all up. (if you are really interested I left the detailed post at the end)
Stuart was laid off yesterday because of lost revenue due to COVID-19. It came as a huge shock and I’m still processing it all. I know we’ll be okay, we are in this together and that’s all that counts.
The beginning of last month we cut my SPRAVATO (esketamine) from twice a week to once a week and I did not do well, both the depression and the migraines came back full force. It has not been a good month. This week we went back to twice a week, let’s hope I see improvement soon. More about this later.
About a week ago I was stung by a scorpion while sitting in my living room. I didn’t have to go to the ER or anything like that. I’m fine. I just hurt like hell, and I still have this spot on my leg that feels kind of weird when I scratch it, but it’s getting better every day.
I had a severe allergic reaction a couple of days ago to something, I don’t know what. My doctor thinks it was a combination of things. Simply put I have had too many allergens bombard me at once, so it wasn’t just one thing, therefore it probably won’t happen again. But if it does I have lots of Benadryl and my EpiPen.
So that’s the series of unfortunate events that have been happening in my life. It really hasn’t been all bad, but this post has gotten way too long! I’ll post more soon, I hope, and tell you all happier things. Like, we got added a new member to our family!! We rescued a kitty. I’ll tell you all about Brody and more soon!
If you’d like to read more details here they are, this is the post I wrote last night….if you read it, you can tell I was not in the best frame of mind. I hope you’ve had a better month.
It’s 1:33am and I’m sitting here in tears, today, um yesterday, the most recent and the worst of the latest in a string of pretty crappy events happened and I’m not taking this last one very well. Stuart was laid off. We were finally affected by the backlash from COVID-19. It came as a huge shock. There was a big layoff in his company right when they started the work-from-home phase, we felt it was a knee jerk reaction at the time. We don’t know what to think now. There is no rhyme or reason as to who they chose to lay off. The company he works for isn’t really losing any business. They are a huge irrigation company for large golf courses, agriculture….they do supply Disneyland, but I don’t think they stopped watering their grass just because they’re closed, and that is just a small fraction of their business (all over the world). The only thing they are having trouble with is getting parts in from overseas.His team is down to 3people! They can’t do all the work and no one knows how to do the things Stuart does. They just shot themselves in the foot.
I’m freaking out. It’s not the money, not really. We have money saved, unemployment is higher right now, he got a little severance package, and we have my small disability income and Medicare, however he was laid off before and was out of work for almost a year, I do not want to go through that again. It totally depleted out savings I finally felt like I could have nice things, now I feel like I have to scrimp and save every penny. I had a house keeper coming in once a month to help me out, I can’t do that now. We had plans for the house and yard, not any more…. I’m heartbroken. I’m shattered.
Now for at least some of the other things that have happened over the last few weeks. We cut my SPRAVATO (esketamine) treatments down from twice a week to once a week and I crashed hard. The depression came back in a huge black wave. It has been suffocating. With the depression, came the migraines, and the increased dizziness and vertigo. The good news, we increased it back to twice a week this week, hopefully I’ll be feeling better soon. But I really do not want to be tied to this stuff twice a week, that takes two days out of my life every week. That isn’t really feasible. I could never even go out of town, and when Stuart gets a new job I don’t think they will be too pleased that he has to take 2 days a week to take me to these appointments.
Next, I was stung by a scorpion. Stuart lived in the desert for many years and never even saw a scorpion, I live here less than 2 years and get stung by one while sitting in my chair watching TV. The irony, you gotta laugh. I had no idea what had happened, I only had this very intense nerve pain in my leg. I yelped in pain and told Stuart, then I noticed that there was a red spot on my leg, and he got me a Benadryl and ice real quick. Because of his quick thinking (we thought it was a spider bite) it didn’t swell at all. It hurt so bad that night I barely slept. For two days it hurt and felt numb at the same time. This was over a week ago and still if I scratch in that place it feels funny, kind of tingly, but it’s getting better. Oh, Stuart found the scorpion the next day, dead. When I looked up the symptoms it was dead on for a scorpion sting.
Day before yesterday I had a pretty severe allergy attack. I was just sitting in my living room and my throat started to close up. Stuart was just in the next room but it closed to fast I couldn’t call out. I took a Benadryl fast, and started looking for my inhaler, which was hard to find simply because I was getting confused. I finally took about 3 Benadryl and used my inhaler so many times I just don’t know. I’m just glad I didn’t have to use my Epi Pen or go to the ER. It did happen again that night, but I got the Benadryl in faster and it ended faster, then yesterday I took Benadry every 4 hours and I was fine. Today I’ve itched a lot. My doctor (I had a telehealth visit with my migraine doctor yesterday and I had to tell her because I had taken my migraine shot the night before the attack) she said it could be a high load of allergens. The allergy count is very high here right now, and then the scorpion, add in a powerful medication, and we got a cat…the combination could have caused it, but one on it’s own probably wouldn’t. So I’m okay there.
I told my neighbor, who has become a very good friend, that she must think I’m a calamity of horrors. I was so touched by what she said, “No, I think you are a beautiful young lady with the most positive outlook I have ever seen” She will never know how much I needed to hear that.