Tag: Migraine treatments

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.

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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.

It still hurts

On By WendyIn Chronic Illness, Headaches, Migraines8 Comments

I’ve started writing this post many times, but it just didn’t come out right.

I planed to write a post each day I was in the Diamond Headache Unit. but I was so busy while I was there.

Then I tried to write a detailed post saying everything I did there, all the things they do, but it got to be too long, and I got too tired. That’s how I’ve been since I got back, just so very tired.

The program there was very good. There were a lot of classes you could attend, like yoga, biofeedback, nutrition, stress reduction, pharmaceuticals…a lot of things to do! It’s really a very good clinic. It just didn’t work for me, and that’s been very hard to tell people. I had so much hope, I didn’t realize just how much, until I didn’t get the desired results.

I was there for three weeks. I decided it was time to come home. Dr. Diamond didn’t say it, I did. I had just been away too long. If I lived close to the hospital I might have stayed, but being so far away was hard. I needed to get back to make sure my pets were okay, they’d never had a sitter for so long. I needed to get back for my Spravato treatments. I had a treatment the day before I left, so I missed two treatments. I was happy that I didn’t crash being off of it that long. Of course I’m sad that the treatment didn’t work for me, but I’m not depressed. That’s a great thing.

When I was at Diamond I did have times where my pain was negligible. That was amazing. But after a stressful night in a hotel with extreme constipation, and then a long plane ride and 2 hour car ride home, I had a major migraine, again.

The first week back it did seem to be a bit better. When I took my abortive, it worked. Then we had more monsoon days, where it was bright and sunny all day, with extreme storms in the evening. My head…oh my head.

I was seeing Dr. Diamond and her team remotely, and they w doing their best to get things under control. It’s just takes a long time. And I don’t like treating all these symptoms without treating the cause. I know they don’t know the cause of migraines, but they do know there are triggers, and evidently we haven’t found out what all my triggers are. We do know that the extreme weather changes are a trigger, but that only happens about 3 months a year. Last year it didn’t happen at all. So what triggers me the rest of the time? Why do I have a migraine all the time? Or is this not a migraine? I’m so very confused. That’s the biggest reason I haven’t been writing. I’m confused. I don’t really know how to go about making things better. My quality of life isn’t very good right now, I’m try hard to fix that. Don’t get me wrong, I accept that I’m chronically ill, I just need to find a way to increase my ….well…quality of life. And I’m working on it.

But let me say more about my treatment with Diamond. I now have an arsenal of medications that I can use, but I’m not too keen on having so much medication. I’m having side effects, and I don’t know which medication it’s coming from or if it’s a combination of meds interacting…or what? I’m now on I think 3 preventatives…or is it 4…yes, I think it’s 4. I also have 3 abortives I can use. That’s a heck of a lot of meds! Then they say that they can’t give me things because I’m not tolerating medications. Ya think maybe it’s because I’m already on a shit load of meds?? I was put on one medication to help with the weather related migraines. I don’t mind taking a medication for that since you can’t avoid or control the weather, but this medication is the same medication I took for Idiopathic Intracranial Hypertension. That medication lowers your cerebral spinal fluid pressure, heck it reduces any pressure you may have….like your blood pressure. Taking this medication when I don’t really need it all the time, caused my BP to drop drastically! I could barely walk. Every time I got up I almost blacked out. I was so out of it I couldn’t really figure out what was wrong. I thought it was just because of the major migraine I was having. Then I strapped on my BP cuff and stood up, while holding on to the wall and being propped up, took my BP. It was 77/49. No wonder I couldn’t walk and my head hurt so bad when I was upright. So I’m have taken myself off this drug. Well I’m tapering off, I’m almost all the way off this med and I feel much better. Still have a headache, but much better.

I had an appointment with one of Dr. Diamond’s PAs last week and found out something I misunderstood. I thought I could only take 2 abortives a week. That’s what I’ve always been told. But I’ve only been given one type of abortive at a time before, now I have 4 different types of abortives. I have an ergot, an NSAID, a muscle relaxant, and what I think is an anti-seizure medication. She told me I can take EACH of these twice a week, just rotate through. So that means I can basically have an abortive every day. That’s pretty cool. Now if all of them worked that would be wonderful, but they don’t all work the same. However, I was given a chart that says what to take when I have a low grade migraine, what to take if it’s moderate, and what to take if it’s severe. That’s good to know. I have found that if I take the NSAID with another medication they work better together. (yes this is allowed) Sot hat reduces the number of days I have for meds if I take two together, but it’s still a heck of a lot better than just 2 a week. That has made things easier. I just don’t want to be on so many medications. One I think I’m going to drop soon, because I should have seen a difference by now, and I haven’t. That’s one down! Woot! We celebrate every success, no matter how small, because we don’t have a lot of them.

I’ve changed my diet, and I think I’m going to go even more extreme…well different than most people eat. I have cut out almost all meat based products. I’m still having non fat plain Greek yogurt sometimes, but that’s about it. Oh I did have an egg white omelet when we went out for breakfast with Stuart’s father, I don’t feel like explaining my diet preferences to him, or anyone else, it’s hard enough dealing with my diet restrictions for medical reasons. I’m basically eating vegetables, fruit, whole grains, beans, nuts and seeds. Unfortunately I have been eating too many nuts and seeds so I haven’t lowered my calorie count at all so no weight loss. Now I’m going to reduce the amount of grains, nuts, and starchy vegetables, to reset my body. I have to cut out all soda! I can’t have just a little, it’s keeping my body in the junk food craving stage. I really want to detox away from all of that and see if I feel better.

I’m tired. I’m really just to tired of dealing with all of this. I’m tired of the headache, and tired of the treatments, and tired of being tired. So I’m resting now. I’m not rushing any more.

Okay, I wrote that a couple of weeks ago, why didn’t I post it? I dunno!

Here’s a snippet of what’s happened since then: I went to Barrow Clinic in Phoenix, I’m transferring all my care there, no more dealing with the woman I’ve been seeing here, and no more having my care in Chicago, that was hard. Harder than I’d like to admit. Dr Diamond wanted me to come back, I just can’t do that, the trip causes too much pain so it negates the treatment I get there.

About Barrow, first I have no idea what the Woman, here has against them, I found them very knowledgeable, they treated me with great respect and validated all my feelings. They changed my medication from Diamond a little, some that were oral are now injectable so I get it faster when I’m in severe pain, and they increased a preventative. They said to wait until January to see if any of the preventatives kick in, if not we will try something else. They also want me to have a tilt table test to rule out things like POTS and see a physical therapist there who specializes in migraines. After I see the physical therapist there a couple of times we can transfer that to Tucson, they will just tell my PT here the treatment plan. Oh and they are recommending that I get another occipital injection that uses a steroid instead of the one I got recently that only used a numbing medication.

Opps, my battery is very low and I don’t have my plug, so I’m going to publish this before I find another reason not to.

I promise I’ll be back very soon.

Catch me up on you all if you can. xoxo

Being disheartened, and hopeful.

On By WendyIn Chronic Illness, Headaches, Migraines, nerve pain8 Comments
Mexican Poppies, Tucson, AZ. by W. Holcombe

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…

courtesy of Headspace

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.

“Relivion targets two main nerve branches believed to be involved in the Migraine process: the trigeminal nerve branches in the front of the head and the occipital nerve branches in the back of the head.”

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?

“See” you soon!

From Hospital to Akathisia

On By WendyIn Akathisia, Chronic Illness17 Comments

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 had my Allay Lamp so I didn’t have to have the bright light from the hospital. It helps relieve migraine pain, and it puts out light that I can stand during a migraine. Unfortunately the nurses didn’t seen to understand about the light. Bright lights are not necessary for everything.

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

Nothing is working

On By WendyIn Chronic Illness, Migraines11 Comments
Photo by Anna Shvets on Pexels.com

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.

One day at a time.

Update – New Treatment Plan – New Devices

On By WendyIn Chronic Illness, Migraines7 Comments

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.

My Normalcy During Pandemic 2020

On By WendyIn Chronic Illness8 Comments
A Roadrunner, Quail, and Hare have all come to visit me recently. Their world hasn’t changed at all.

I’m so incredibly lucky, my life really hasn’t changed all that much during this craziness, yet, it has.

We’re lucky, no one close to us have lost their jobs or anything like that. It really breaks my heart for all who have and continue to each day. I don’t have anyone close to me who is on the front-lines treating people, I’m so very thankful to these amazing people. I really don’t think I’ll know just how much this has really affected my life until it’s all over and we find out what businesses have survived and things like that. I’m desperately worried for these people. I’m helping all I can, ordering from local sites online, buying gift cards…, but will it be enough?

For me personally, I don’t normally go many places during the week, to doctor appointments, that’s about it. Well that was about it until recently. Recently I started getting more involved in my neighborhood; I was going to Women’s Coffee on Tuesdays and a Women’s Empowerment Journaling/Discussion Group on Thursdays. On the weekend we’d cram in everything else, grocery shopping, seeing dad, entertainment…ANYTHING else! Of course, all of this changes if I’m not feeling well, so things change a lot. I guess that’s why I don’t feel that things have changed all that much, because I’m used to things being canceled. I’m used to staying home, I’m used to not being able to do things I’d like to do, so that part of things isn’t really that stressful for me. But it’s different when you have to do these things and when you are forced to do them.

Truthfully, things really haven’t changed that much though.

I have still been going in for my SPRAVATO treatments twice a week, I start once a week this week. And it has been amazing! First let me assure everyone that we are extremely cautious. I’m the first patient seen, the room is completely sterilized, I only see one person, and they never touch me. Now for the results, as I’ve told you before, my depression is gone! I do feel sadness, but it’s not the same. Sadness is situational and it feels different, oh so different. I never knew just how different it felt. What I haven’t shared is how different my migraines are! I had TWELVE migraine free days last month!! And so far I’ve had 9 free this month! Did I say AMAZING?? Understatement huh? So, let’s cross our fingers it stays this way now that I’m going down to once a week.

I still see some of my neighborhood friends, just from a distance. We have “6 foot plus” patio visits. A couple of us will meet on our patios sitting 6 feet plus apart and just visit for an hour or two. It’s so nice to have a little bit of normalcy in this craziness. I admit I’m upset that as soon as I start feeling well enough to get involved and make new friends I’m sidelined by something that has nothing to do with me, but it is forcing me to take it slower, and that might be a good thing.

Stuart working from home seems weird. Even though he did it for seven years, I was really sick then, now that I’m not as sick, and I got used to him not being here, it’s harder having him around all the time. Well, not hard really, just weird, but it is kind of nice too. Now that he has finally gotten off the dining room table and has his office set up it’s much nicer! Plus, he doesn’t have to add in travel time to go to or from work!

I’m trying to spend more time in my studio, but I haven’t found that I’m actually creating more, I’m just hanging out in there. I’m enjoying that a lot though. I go in there and sort through emails and organize stuff and think of things I want to do and plan things…..But actually paint or anything, yeah, I haven’t done much of anything. I don’t know why. I’ll get there. It’s been a while.

Yes, our weekends are different. However, we are still seeing dad if we can. We take him his groceries on Sunday. (Stuart shops for groceries during the week, not on the weekend, that’s just crazy. He says there are still so many people there with no masks or anything just leisurely shopping. WTH?) We also take him lunch or dinner and spend some time with him. We are the only people he sees. We eat with him way on one end of the table and us on the other. It’s quite funny trying to maneuver the house and stay 6 feet apart, but we do a pretty good job. When we were there yesterday he finally talked a little about Margaret’s death and Stuart’s mom’s death, he doesn’t show his emotions normally and doesn’t talk about those kinds of things, I was very pleased to hear him talk about it. It has to be so hard on him. I’m so glad we are able to see him, at least a little, now. He wouldn’t allow us to come see him for a long time, he’d only allow Stuart to come drop off his groceries. It really takes a load off my mind to be able to see and talk to him.

We are trying to do some walking around the neighborhood. I’m trying to do a bit of yoga and more meditation. We put stuffed animals in our windows for the kids to see, and I put a painting in the window just to share prettiness. A lot of people in my neighborhood are doing the same. We are also doing sidewalk art. I haven’t gotten mine done yet, I just got some sidewalk chalk! When I do I’ll take a picture. I will admit I’m eating very poorly, that needs to change.

How many of you have gained weight during all of this?

What are you doing differently?

How are you dealing with how things have changed?

When I Can’t Take Abortive Migraine Medication

On By WendyIn Chronic Illness8 Comments
Image by Seksak Kerdkanno from Pixabay

I have chronic migraines. You are defined as having chronic migraines when you have more than 14 migraines a month, I have more than 20. In the last month I’ve had 2 migraine free days. Due to the risk of Medication Overuse Headaches (you can read more about MOH here), and the possibility of some nasty side effects, you are only allowed to take abortive medications twice a week or a maximum of 10 per month. Abortive (also referred to as acute or rescue) medications are medications you take at the time of the migraine to stop it, they are best used at the first signs of a migraine. Abortive medications are analgesics (such as NSAIDS, Excedrin Migraine…), triptans, ergotamines, and on rare occasions opioids.

This week has been a rough one, I’ve had some intense migraines and I’d already used my abortive medications for the week. What’s a girl to do?

Suffer? Yeah, maybe, but I have found a few things that do help a little and sometimes they even get me back to my smiling self. 🙂 Like most migraine treatments these work best if you use them early, when the pain gets really bad, it takes much more to get it under control. (so it’s really hard when you wake up with a whopper) Here’s a little list of things I’ve been using that seem to help me, just keep in mind that everyone is different these might not work for you, or, who knows, they might work better for you than they do for me.

  • caffeine – one of the first things I reach for now is caffeine. I don’t use a lot, but I am using more than I used to. I always keep my consumption under 200mg a day (going over can cause rebound headaches so you have to be careful about this treatment), but when I have a migraine a little jolt of caffeine can help. I normally take it in conjunction with other things. (my usual dosage is about 41 mg in a 16oz drink)
  • ginger – Ginger has been shown to help stop a migraine. There have been a few studies showing how ginger helps with migraines, the one that impressed me the most was one that was held in an ER, the patients that came in with migraines were either given an NSAID with ginger or the NSAID alone and the group that were given ginger were more likely to find relief across the board. There is also a study that showed that ginger was as effective as sumatriptan (Imatrex) for some people. I’m not one of those people, but I do think it helps. So I take 500 mg of ginger now at the first sign of a migraine. Here are some links to studies about ginger Ginger and migraine treatment, Ginger efficacy compared to sumatriptan, Feverfew and ginger for migraine.
  • I decided to try a homeopathic remedy, I honestly didn’t think it would do anything, but it didn’t cost much so I thought I’d give it a go. Much to my surprise, it helps. It’s not a miracle, it rarely takes it all away, but it often lessens it enough that I can function. (I think it’s worth noting that I’ve never taken this without either caffeine or ginger) It’s called Hyland’s Migraine Headache Relief. It contains Glonoinum, Belladonna, Gelsemium, Nux Vomica, Iris Versiolor, and Sanguinaria Canadensis. I found it at Sprouts, but when I did an online search it looks like you can find it all over. The dosage is 1 or 2 tablets every 4 hours. You let them dissolve on your tongue, I like this a lot. If I happen to not have water I can still take this, and it doesn’t taste nasty. I always start with 2, and in 4 hours if I need more I then decide if I need 1 or 2 at that dose. I have noticed no side effects from this so far. I bought this product with my own money, I am not receiving anything from the company, they know nothing of me, this is not an official review or anything like that.) undefined
  • medical marijuana – I’m going to write a post about this soon, probably the next post I put out, but I thought I’d put a little blurb here that I do use medical marijuana to help with my migraines. It is not a miracle, but it does help. However, it is a lot of trial and error to find what works for you.
  • ice or heat – my head is variable, it sometimes feels relief from an ice pack, sometimes from heat, so I try both. Sometimes I’m afraid to try either for fear of making it worse. But normally I’ll try ice if my pain is mainly on the top of my head, if my neck is the main culprit I’ll use heat, if my forehead is where the pain originates I kind of leave it. I have an IceKap, I have found it works well when my head wants ice, but it’s heavy and my neck doesn’t like that so I don’t use it much. However, if you are someone who needs ice for your migraine, this cap is great for getting your head cold and it stays in place. It presses on my glasses though, I don’t like that, I don’t like to take my glasses off when I have a migraine because of the vertigo. (again, I bought the IceKap, no one knows I’m saying anything about it. I’m not getting anything.)
  • Epsom Salt Bath – I can’t do this all the time because of vertigo and other times when I’m hurting too much I just can’t get in the tub, but when I have a moderate headache a nice soak in a tub with Epsom Salts can really help. Add the scent of lavender or mint and it can really be relaxing, and I normally hate scents, but I really liked the lavender Epsom salts I tried recently. It wasn’t a fake smell, or too over powering. It was very relaxing. That’s a good thing.
  • That’s about it from me, other people really like essential oils, but for the most part scents trigger migraines for me, none have relieved them. I do find peppermint a little helpful sometimes, but other times it makes me nauseous, so I don’t like to risk it. Lemon is about the only smell that never makes me sick. Oh…Sometimes if I eat something spicy it will lessen the pain in my head for little while, but it doesn’t last. If you can trigger an ice cream headache, it’s supposed to stop a migraine, but dang! That’s something I don’t really want to try. Oh who am I kidding, I have tried, you know it’s hard to trigger one of those when you are trying to do it. I still can’t tell you if it works, and when I think about it I really don’t want to cause myself that much pain.
  • Note that I didn’t include things like massage, acupuncture…. because I consider those more preventative and today I’m focusing on abortive treatments. Also I’m focusing on things I can do for myself without help.

How do you treat your migraines when you can’t take your meds,?

Did I share anything that you found interesting?

How has your week been? I’m thrilled to say today I don’t have a migraine! The exact opposite of every other day this week. Yay.

May we all have a pleasant weekend. We are finally getting the rest of our furniture this weekend. Woot, Woot!