Category: Migraines

Better day, kinda.

On By WendyIn Chronic Illness, Migraines5 Comments

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

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

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

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

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

It’s late again, and I’m awake.

I’m scared.

Not the same reason, thankfully.

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

So I’m scared.

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

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

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

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

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

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Feeling heard, and communication frustration.

On By WendyIn Chronic Illness, Migraines4 Comments

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

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

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

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

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

UPDATE!

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

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

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

ANOTHER UPATED

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

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

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

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

Round two anyone?

On By WendyIn Chronic Illness, Headaches, Migraines7 Comments

Not edited, stream of thought:

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

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

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

,

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

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

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

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

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

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

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

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.

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

I missed you too much, going to the headache clinic.

On By WendyIn Chronic Illness, Headaches, Migraines13 Comments

Okay, so I couldn’t stay away.

I don’t know how much I will be posting, but I hope you will bare with me when I’m silent for long stretches. Such is the live with chronic illnesses and pain.

If you’d like to know more about what’s been going on with me here’s where I’ve been, sporadically, https://dizzychickblog.wordpress.com/

I have great news! At least I hope it is.

Headache guide by W. Holcombe

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.

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!

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.

Late Night Rambling

On By WendyIn Chronic Illness, Migraines, Pain15 Comments
Me, manipulated in the #photolab app

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.