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.
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.
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.
I’m shocked that it’s been so long since I wrote an update on me. The last month, or more has been stressful to say the least.
I just looked back at my last few posts and it looks like I have a lot to catch up on, forgive me if I really have said some of this. I wish I’d written it all before, I like to keep up with things and this is one of the best ways I have of documenting things. So, here goes…
I went to Barrow Headache Clinic in Phoenix, and I really like the doctors there. I saw a neurologist who isn’t part of the actual headache clinic, this was the best way to be seen sooner, the wait to see one of the doctors in the headache clinic was much longer. However, the doctor I did see has been working with the doctors who specialize in headaches. I’ve actually had 3 doctors working on my case. When I had the appointment I didn’t feel rushed at all. I felt like I was respected, that they understood that I’m very knowledgeable about headache disorders (mine in particular) and they trusted me when I told them what I had tried and what didn’t work. They are working hard to help, but they aren’t doing in-patient treatment right now because of the increase in Covid cases. That’s hard. However, they are trying new medications, have changed up some that I was already on (increased some doses, changed forms of some…) So far, I’m very impressed. The only thing I’ve had a hard time with was that I had a hard time getting the patient portal to work, and no one could seem to figure out why. I’d get in, but it had no record of me being seen there, no record of upcoming appointment, no way to message my provider…nothing. Finally it is fixed, that’s making things much easier.
They ordered a Tilt Table Test to see if I’m having blood pressure problems when i stand, or if I have POTS (Postural orthostatic tachycardia syndrome). It did show that my BP is dropping significantly when I stand. (Orthostatic hypotension — also called postural hypotension) It doesn’t appear that I have POTS, if so it’s mild. As you may recall I have been having some pretty high spikes in my BP, which caused a Branch Retinal Vein Occlusion in my left eye, it seems I’ll never recover all of my eyesight in that eye. It’s not bad, but the lower part of my vision is very blurry, it makes it hard to read and to see things clearly on my left side. It may get better, it probably won’t. The last time I went to the retina specialist (about a month ago) it showed that it had bled again, that’s why my vision was a bit worse. I got another shot in my eye, and i go back to him next week. (It was supposed to be a couple of weeks ago, but I had a Meniere’s Flare that lasted over a month). He told me that the reason it bled again is because I had another spike in my BP since the last time I saw him. So, what do we do about my BP. I’m on BP meds for hypertension, which may be causing my BP dropping problems, but it might not. I see my PCP in a week or so to discuss this, I really hope we can figure something out. I’m tired of feeling faint when I stand, my vision blacking and the pain in my head spiking when I squat down and get back up. It’s difficult, if this is contributing to my pain, this needs to change.
I do have hope, but I’m very tired.
The Meniere’s flare really did a number on me. My ENT put me on steroids to break it but it seems to make it worse. It also caused me to be ravenous, emotional, paranoid, restless….it was hard. I looked over my journal entries during that time and they are dark, and very sad.
I’m having wide spread pain. I was diagnosed with fibromyalgia many years ago, but after I made a lot of diet changed, it seemed to calm down a lot. I’d only have short-lived flares. But lately, it hasn’t stopped for quite some time. My body hurts.
I’m very tired. Exhausted.
Stuart is starting a new job next week. It is only paritally remote, he will have to go in to the office some. That makes me nervous. I’m okay, trying not to worry about the future, sometimes I succeed, sometimes I don’t. Of course the Meniere’s flare showed me the worst that could happen. I had severe disequilibrium and minor vertigo for so long. I couldn’t even walk by myself. My walker was of no use, I was way too off balance and would just tumble over. S even had to help me to the bathroom. I didn’t realize how often I pee! I met with a couple of my neighbors and asked if they knew of anyone who might be able to helpo me when S has to work in the office, taking me to some appointments, perhaps coming to help if I’m too off balance…anything that comes up. Both immediately said they were very willing to help. one can’t drive me to appointment right now (she’s having some trouble with her back and it’s causes neuropathy in her feet, hopefully that won’t last), the other is more than willing when she can. She’s a bit busy so I need to make plans as far in advance as I can. I really hope this works. I’m so amazed how the people in this neighborhood have embraced me. I’m sad I haven’t had the opportunity to meet more of them, but Covid got in the way. I can’t believe we are going on 2 years of this. I don’t think it will ever go away, but I sure hope we can deal with it better/easier in the not to distant future.
Another big stressor, my therapist is retiring. At first I thought it was no big deal. I was okay with everything. Now, not so much. I’ve been very anxious. And I realized just how much I am going to miss her. When I first moved here I knew no one, she was my only real contact with people other than S’s family. That’s not good. So she didn’t just feel like my therapist, she feels like a friend. I’m really going to miss her. It makes me cry just thinking about it. This week I met with a therapist who may be my new therapist, I believe in meeting at least 3 times before deciding that, but I felt very comfortable with her, I think it might be a good fit. She even said that my old therapist could join us in a session to help with the transition. I decided that would be too hard on me trying to hear them both, so they are just going to talk so my old therapist can give her an idea of who I am. My present therapist told me, “I’ll tell you everything we talk about” She is so supportive of me. She’s always telling me how special I am, how se admires how I handle things, how strong I am….I don’t think I come across that way to many other people, I’m glad someone does. I do try so very hard.
Well, I’m getting very emotional so I don’t think I can continue right now.
And I haven’t read it over for errors, I’m sure you’ll understand and it will give you an insight as to how I think I guess.
After being told, erroneously, that this would be my father-in-law’s last Christmas we decided to brave things and try to create as many memories with him as possible. That included having family gatherings.
We all got together for Thanksgiving, during which I found out that 3 people in that group are not vaccinated. I tried to be as careful as I could, but I felt the whole day was irresponsible, and scary.
Now we know that what’s wrong with Dad’s heart will most likely not shorten his life span, we aren’t feeling the need to get us all together again. At first I thought we still should, after all he’s 84, who knows….who knows about any of us really. But now I’m thinking, do we want our memories to be about all of us having COVID? I don’t think so.
I just got back from my physical and my doctor told me that we need to celebrate the best we can, and still be cautious. He told me to stay away from unvaccinated people, especially indoors. The hospitals here are at near capacity. It’s bad.
So a family Christmas is out this year, and I’m okay with that.
I saw a show the other day where a child was trying to share what Christmas meant to an alien. (Dreamworks Home For the Holidays on Netflix) As the story went on the alien tried to share his joy with his fellow aliens, but they didn’t get it and they were really just making a big mess. (much like all the garbage created by Christmas now) Finally the girl realized, Christmas isn’t about all the things, or family, or gatherings, or any of that….Christmas is a feeling. It’s the feeling of magic, kindness, giving, love, joy…..it’s the feeling of having goodness you can believe in.
I like that.
There are so many celebrations this time of year, I kind of put them all under the umbrella of Christmas, it seems others do too.
I want to send glad tidings to you all, no matter how you celebrate the holidays…or don’t, that’s okay too.
Have the best celebrations you can, while still being careful out there.
This year, we’ll do much the same as we always do.
We have our unconventional tree, that includes everyone. (that’s why it has a rainbow glow) We will still watch It’s a Wonderful Life on Christmas Eve while eating Chinese take-out. Still putting together our Peanuts Christmas puzzle and build our various Lego Christmas things (train, tree, Santa….). That should keep us busy! Maybe I’ll even make cookies!
When you are celebrating the holidays remember, it’s not about getting together with family, the gatherings, or any of the preconceived notions that have been pushed down our throats. (Could there possibly be any more romantic Christmas shows?) The holidays are about the feelings. They are about caring for each other, those you know and those you don’t. It’s about giving, not receiving…but I admit receiving that magic is pretty darn special. Let the magic shine in you. The other day while S was working I closed myself off in the studio, played Christmas music and sang at the top of my lungs! I worked on little art projects and just had a magical day, all by myself. It was actually the most magical feeling. Unfortunately I think I’ll have Christmas music stuck in my head until July! Oy Vey!
Please remember that everyone is going through something we don’t see, be kind, reach out if needed.
The holidays is a time when so many are lonely, and depressed. They can’t feel the magic, they can only see how they are left out of it all. Some are sick, poor, or simply alone. If you are feeling this way, please reach out. If you notice anyone feeling this way, or suspect it, reach out. Sometimes simply letting someone know you care and they aren’t alone is enough to help them through this tough time.
Merry Christmas to all!! And to all a Good Night!!
**Little Mini-Me update….the migraine is still here. I had my physical yesterday and my bloodwork looks great! My BP is great! I still hate having High BP disorder in my records, but oh well, at least it seems to be down now….maybe. I saw the retina specialist last week and he said my BP had to have spiked sometime since I saw him last because the vein leaked again. I noticed my vision was worse, but thought it was just that it wasn’t going to get better, not that it was actually worse…that didn’t make much sense did it? So I got another shot in my eye, I’m seeing better! Hope it stays that way, I go back in a few months. I saw the dentist this week, it had been a while…before lockdown….things weren’t horrible, but not as great as I would have liked. I need to see a TMJ specialist because I’m grinding my teeth and she thinks it might be contributing to my migraines. I also have a Tilt Table test set up for the 28th, this is at the clinic in Phoenix. I realize this is a stream of information, I hope it makes sense. Oh, found out yesterday that my therapist is retiring in March. I’m sad about that. I feel like I’m losing a good friend.
I’m leaving Saturday for the Diamond Headache Clinic in Chicago. They are very well known for helping headache patients who are complicated. I had a virtual appointment with Dr. Merle Diamond, she is the daughter of the founder. She was very encouraging. She said we’ll start with a cocktail infusion and if that doesn’t work, she will try something else. I have no idea when I’ll be home. The average stay is 7-10 days, it could be a little less, or more.
When I had my virtual visit with Dr. Diamond she asked when I wanted to come and I said “as soon as possible”, expecting to have to wait for a long time, she said “how about tomorrow?”. Oh my! She really wanted to get me in there fast to get started helping. Unfortunately, I couldn’t go immediately, I have some other appointments that I had to take care of before leaving. Like getting more trigger point injections, I sure don’t want to have the severe nerve pain while I’m there.
They do much more than just medication treatments, I’ll also be working on mindfulness relaxation, nutrition (I have to eat a low tyramine diet while there, and can have no outside food), and other modalities if they think it’s necessary. For example they also do physical therapy, massage…ect.
One more thing, Stuart gets to stay with me. They have the room set up for a companion. So we don’t even have to pay for a hotel room. I couldn’t get any luckier about this trip. Oh, yes I could, since I’ve already hit my maximum out of pocket this isn’t going to cost us anything. Just the plane tickets and a hotel for extra days we are hoping we can spend so we can visit friends out there. And hopefully visit the Art Institute of Chicago, I’ve always wanted to go there. If they are actually open to visitors with the increase of covid cases. Hmmm, will I feel comfortable going there? Oh my! I just thought of that.
I’m excited to go, and also way stressed out . There is so much to do this week to get ready. Luckily Stuart is very good at planning. He has lists for so much. I am a list maker too, but not to the extent he is. It makes me laugh sometimes.
More news about me. I had a urine test to check on my adrenal function and we found that the hormone norepinephrine (noradrenaline) is high. I then had to do a 24 hour urine test, I turned it in yesterday. When I turned it in the lady said, “This is just 24 hours?” Hahaha, I pee a lot! The test will determine if I have a tumor. Tumors on your adrenals are normally benign so I’m not worried about it. Of course if I have one they will remove it. There is also a possibility that it’s high simply because I’ve been under so much stress, especially from pain, for so long I’m stuck in the fight or flight mode. And it could be caused by a medication I’ve been on, (Fetzima) that I’m tapering off of now. If so the relaxation techniques I’m going to learn will help, and I’ll probably need medication at least for a while. This could explain the increase in my symptoms, the sudden high blood pressure, increased heart rate, high anxiety, prolonged migraine….among other things. I’m actually hoping that this is the reason., it could change everything.
I’m going to try to keep a diary of everything that happens at the headache clinic to share here. I hope it will be helpful to some people.
My headache specialist here, that I’m not fond of, actually suggested I go to a headache clinic because she is out of options, and this migraine has been going on way too long. She suggested Diamond or Jefferson, but when I messaged her to tell her I was going, she didn’t even respond. What is wrong with this woman? And why did it take her so long to suggest this? I’m so glad I’m getting a new doctor in November.
I have a virtual appointment with my psychiatrist in about an hour so she can see that I’m still doing well at the lower dose of Fetzima, so I can take it down even more. This is a very slow taper, it’s kind of frustrating, I really want to get off this as soon as possible to see if it may be the culprit. So I’m off to get ready for that, then I need to do more to get ready for the trip. So much to do and my symptoms are very high lately so it’s very hard to get things done. It’s amazing how we can push through so much. Plus, the anxiety about all this is driving me crazy. I know it’s mostly from the norepinephrine, but it doesn’t make it easier. I do so wish I could drive so I could get some things done while Stuart is working. This is really going to wear him out.
Oh, we are so lucky that our pet sitter is available to come stay with out babies during our trip. So he’s not only pet sitting, he’s house sitting. And he’s going to clean! He said he wants us to come back to a clean home. He’s going to get a big tip from me!
I hope you are as happy to be back here at Picnic With Ants as much as I am. I put so much into this site, I just couldn’t give up on it.
How are you all doing? Have you ever had to go to a specialty clinic? I’d love to hear about it.
I don’t even know where I left off so I’m just going to ramble a bit. I guess I’m too lazy to read my last post, or just not in a good frame of mind lately.
A lot has been going on. I had an injection (epidural) in my neck to help the disc bulge on February 22nd, and lately it seems to be wearing off. I’ll be getting a second injection on the 22nd of this month. They say it can take a couple of injections to get the full effect when you first start getting them, so hopefully this one will last a long time. I’m just concerned because they don’t normally give more than 3 injections a year, what if this one wears off in just a couple of months? Even if they would give me more injections, I’m not sure that’s wise considering I had Avascular Necrosis (AVN) in my left hip causing a total hip replacement, which they believe was caused by steroid use. Trying hard not to think about all of that, just take it one day at a time, but wouldn’t it be irresponsible of me not to at least be concerned about this? When I talk to my doctor he just said that it’s always more of a chance once you’ve had AVN, but it’s the only thing they can do to relieve the pain right now. Later, if it gets worse, they can do surgery, but who wants to have surgery on their neck? That’s pretty darn scary to me. But I will NOT think about that! That really is getting worked up about what might never happen. Of course, I was getting upset about the whole injection thing, so I guess I really should just take it as it comes, and not get worried about things that may never happen.
I was about to tell you how happy I was about something that caused me to look at the calendar to check the date….Wow! It’s been a long time since I posted! It’s been a bit busy here. Anyway, my happiness… I had a Vyepti infusion on the 16th of March, it was my first infusion at the higher dose. Afterward, I had NO migraines on the 18th, 19th, 20th, and 21st!! After a YEAR of migraine pain, I had FOUR days without one!! I was so happy and so hopeful. even after a bad on the 22nd, I was still hopeful that I’d have migraine free days once again. That hasn’t happened. Since then I’ve had 8 days where my migraine made it impossible for me to do anything except curl in a dark room. The rest of the days I’ve still had migraines but I was able to do something, even if just a little.
I’ve been feeling so disheartened. It looks like the PT didn’t help the pain at all, only with the injection have I been able to get relief from the horrible nerve pain. It did however, improve my range of motion and strength. So I’ll continue my exercises and hope for the best. I had a little break in my migraines, but it was very short lived. My mood has fluctuated from happy, to anger, to sadness…
Then last night I saw in an article on Migraine Strong that a new neuromodulationdevice for migraines has been approved by the FDA. I already have the Cefaly and the Nerivio and bot word to some degree. The Cefaly is the best for me. It stimulates the supraorbital branch of the transgemial nerve. The Nerivio stimulates nerves in the arm that makes your brain focus on it and off the migraine pain, it’s kind of interesting. The Nervio works for me only if I use it at the very beginning of a migraine, when you are intractable it’s impossible to catch it at the Start of a migraine.
This gives me hope. Hope that I might get some relief. However, since it isn’t on the market yet they don’t know how much it will cost or if it will be covered by insurance. Since I’m on Medicare, if they have a discount I won’t be eligible. That’s very unfortunate. I did just find out that if you are on Medicare you should reach out to the manufacturer to see if they will offer you a discount. We’ll see if I can get it. crossing fingers. If not, I guess it wasn’t for me.
I’ve been looking at a headache clinic in Phoenix, but I don’t see where they offer more than I’ve already tried. I honestly don’t know what to do or, where to go for help. Would Mayo offer more? I just don’t know. I have an appointment with a new headache doctor, but the first appointment she had for new patients is in November! It’s really crazy how in demand headache specialist are, and how few there are. I just read in Practical Neurology “If all patients with migraine were cared for by a UCNS board-certified headache specialist, each would see approximately 78,000 patients per year”. UNCS is the United Council for Neurologic Specialities. Personally, don’t actually think that all patients with migraine need to see a specialist, however if you do not respond to typical treatments you do need to see one. That can be very difficult. The average neurologist receives just 4 hours of training on headache disorders. There are about 500 headache specialist in the US. Migraine affects 1 in 7 people world wide. It’s just crazy that we don’t have more doctors who specialize in it. Tucson has 2, one is certified by UCNS, the other is certified by the Certificate of Added Qualifications (CAQ). The later is who I’ve been seeing, the former is who I have an appointment with in November. I’m very lucky that I have access to a headache specialist at all, there are some states that have none!
I’m so grateful for all the new medications and new neuromodulation devices that have come out for migraine. It’s amazing really since there is so little money allocated to migraine research. There is so much they do not know.
On a good note, I got my first vaccine shot, and get the second on Saturday! Woot! I’ll still wear a mask and be careful, but I might actually go out some.
I plan to have a give away soon. I received a lot of things from the Retreat Migraine conference (virtual), and I can’t use all of it. Stuart also got a goodie box since he attended too, so I have some of that to give away too. I just want to give back to you, after all the support you’ve given me over the years.
I’m thinking of starting Mindfulness Monday again. I’d like your input if you’d like that or not?
When last we spoke I was hurting too much to type. I’m happy to say that I can type again! I’m not sure I have too much to say, but at least I can type. I’m going to try to be brief here, just letting you guys know that I’m okay, and I’ll try to post more often.
For the past few months I’ve been consumed by the nerve pain going down my arms and bursting out of my hands. The pain also traveled down my back, in between my shoulder blades. I’ve had a lot of pain in my life, but this nerve pain has, by far, been the worst. I believe in accepting what comes and being okay with it. Everything changes, you just need to go with it. This pain I could not accept, and that hurt me as a person. I couldn’t accept what was happening to me, the pain was just too great. I have a much deeper understanding of what severe pain can do to you. I saw what it was doing to me, and I didn’t like it, but I couldn’t change it. How can anyone accept feeling like their hands are on fire from the inside out, every morning! I would scream with pain. I made bargains, if it would just stop I promised I’d be a better person…ect. I have never wished to die so often, and I’m not depressed. Can you imagine how messed up I’d be if I was going through this with depression? I can’t even imagine.
I was in physical therapy in January, and it seemed to be working, then I had a set back and we kind of started over. Then I felt like I was getting better, then I hit a wall and crashed. Every time we tried adding any strength training all my symptoms would return. It has been hell so far this year….but it’s getting better.
Last Monday I finally got an epidural in my neck and trigger point injections through my trapezius on both sides. I cannot express enough how this has changed my life! I’m no longer afraid to go to sleep for fear of what will happen when I wake up. I’m sleeping more than 4 hours a night. I actually slept for 10 hours one day this week! I think I’m still catching up on sleep.
Migraines are still here. Both my physical therapist and my pain management doctor think that my migraines may be so much worse because of my neck. The last two days I’ve had a very intense migraine. That’s really hard when you don’t have a rescue med that works and Medicare won’t pay for the only one that does. I don’t have thousands of dollars to spend on medication each month. So I’ll live with the pain, for now. The pain changes from day to day, hour to hour, it’s often just in the background, but when it climbs too high, I really notice. But that’s the thing, yes I’m in pain all the time, but it is constantly changing, that gives me hope. Everything changes.
Okay that’s it for today. I promise I’ll try to be back soon. I have lots of migraine stuff I want to share with you all.
As much as I love most things about the holidays, the stress is not one of them, and oh, how stressful they can be. This year, it’s different.
Having multiple chronic illnesses that have kind of ravaged me lately, I’m thankful this year the holidays mean no stress…or as little as can be.
There’s one person (or maybe two) that I always have to see during the holidays that I’d prefer not to spend time with. This year is different, I don’t have to. When we were asked what the plans were for the holidays, it was nice to say that we are isolating. (With the number of COVID cases rising each day, why would anyone risk getting together? I don’t get it. I’d rather have my loved ones alive and well so we can get together when it’s safe.)
I don’t have to get upset if I’m not invited to parties.
On the other side, when I am invited to a party, I don’t have to worry I won’t be able to go, or might get sick while I’m there.
I don’t have to decorate my house for drop in guests.
I don’t have to feel bad when I can’t host a dinner…no matter how much I’d like to.
This year it will be quiet. I still feel like I need to make nice meals, and cookies, and…. But I don’t have to, and if I don’t, no one will know.
I can just sit back and watch Christmas shows on TV, sing carols out of tune, and eat Chinese take-out if I want.
Okay, the first two, yeah, that will get done, but the Chinese take-out might not. We’ll probably have Dad over for a social distance meal on Christmas, but who knows. Maybe not. It’s a no stress holiday after all.
Remember, we aren’t STUCK at home, we are SAFE at home….and so are our loved ones.
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
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.