Nothing is working

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

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

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.

My Brain Screams

manipulated detail photo of saguaro catus by wendy holcombe

For over a year now I’ve been hit with one thing after another. Last Fall my bipolar medication stopped working and I basically had a psychotic break with the mania/rage going way out of control and battling a lot of medication side effects before we finally got that under control. Then I had a severe UTI that caused hydronephrosis in both kidneys, I had a cyst removed from my scalp that got horribly infected and I had a reaction to the antibiotics. In April the severe intractable migraine started and has continually gotten worse; over the last couple of months I’ve been having an escalation of cluster headaches, at least one a week. and now my antidepressants have stopped working. All this while we have been looking for a house, in the worse housing market I have ever seen, and we have to move from our rental by the end of November.

It is any wonder my brain has decided to check out?

In 2016 I started having seizures during an extremely stressful time of my life. It was determined they were psychogenic non-epileptic seizures. You can read more about that in this post: Psychogenic Non-Epileptic Seizures What Are They? Since that time I haven’t had many, only a few and only in times of great pain (like when I was in the ER for my migraine) or extreme stress (like after a vertigo attack that happened during the mania). Lately they have been coming regularly. It is increasing my pain levels dramatically. When I have a seizure it looks like a grand mal seizure. It starts with my right hand twitching, then the arm goes, and the whole right side twitches and curves back, my head draws back, my muscles are all tight and spasming. It is very painful, and my neck and shoulder on the right side still hurt so much. I feel tingly on that side, and I just feel so off. During the seizure I am mostly aware, but I can’t do anything. Sometimes I’m not as aware, sometimes I’m very confused when it’s over. I always cry when it’s over. I feel so exposed, vulnerable, scared, and unsafe.

Just a year ago I was doing so much better I bought a car. I was driving, cooking, shopping, painting, swimming…. I don’t understand what happened. I’m not asking “Why me?” or anything like that, I’m simply confused. I know we made a major move, but I was doing pretty good for the first few months we were here, so I really don’t think it was the stress of moving. But I guess one stress could possibly have snow balled into a bigger stress… into a bigger stress… into more illness…but who really knows. All this could have happened no matter what. It could have happened independently, but it just happened to happen one right after another I suppose.

Where does it leave me now?

Migraines – I’m still starting Aimovig on the 28th for my migraines, but I won’t know if it’s working for 3 months. I just finished a round of steroids hoping to get a break from the pain, it did lower the pain level, but they made me so sick I couldn’t enjoy it. (Oh boy was I sick, Meniere’s and steroids do not mesh well together, at least not with me). I may go to the pain clinic to get injections in my neck, I haven’t decided about that yet. Just a little scared about that one. Oh, the Migranal nasal spray is working as a rescue medication, thankfully. It doesn’t completely take it away, but it comes close, so I am having a little bit of relief twice a week. More than I was getting, but as I said, it doesn’t take it all away, it takes it from a 10 to a 7 or maybe, if I’m lucky a 6. Ah….a 6…but that is a rarity.

Mental Health – I started a new antidepressant, Trintellix, on Tuesday. I’m to try it for 2 weeks and if it doesn’t work we’re going to try Ketamine. I’ve tried everything else. This should be interesting. I’m working with both my psychiatrist and my psychologist about my seizures. I need to get my pain and stress under control. One step at a time. Just one moment at a time.

Home life – We’ll be moving into one of Stuart’s dad’s houses the beginning of November. The house Stuart grew up in. We aren’t sure if we’ll continue to look for a house to buy, or if we’ll stay there and renovate his house. The house is a bit further out than we planned to live, so we’re going to live there for a while to see how we like it. Kinda cool that we can do that. I’ve just been freaking out a little about not having a home, and needing to settle down. I’ve been feeling so lost and temporary ever since we moved from our house, six years ago, but it’s been so much worse since we moved here. When we moved here we basically got rid of everything. We have 2 chairs in our living room, and one is very uncomfortable. We have no dining room furniture. Our home is very sparse. We did not plan on renting for this long. It’s just so hard on me. This has just been so hard. I need stability. I NEED IT.

Right now I feel very alone, vulnerable, and scared. The only place I feel safe is in my husband’s arms. He literally saves my life every day. I told him that if it wasn’t for him I wouldn’t be here any more. So much pain, both physically and mentally…it’s just so much. And my amazing husband told me that he loves me so much, he never wants to lose me, but it also makes him feel guilty because he knows how much I’m suffering. I don’t know how I ended up with such an amazing man. He’ll never know how much it helps me to know he hears me.

I have so much, a wonderful husband, a roof over my head, nice clothes, good food, access to quality health care, support…. and yet I’m so unhappy. I’m so very sad. It hurts so much. My thoughts are consumed with pain. I find no enjoyment in anything. A friend posted a question on her blog asking if you found out you were going to die what would you regret not doing more of….and I could not answer that question. First I thought, not helping others more, getting more involved…. But then I tried to think of something I enjoyed that I would wish I had done more of, and I had nothing. There are things I used to love to do, but now…..not so much. My art…nope. Cooking…too much work. Taking pictures…can’t see it. I can think of nothing. All I do is sit and color by number. And that’s not for enjoyment, it’s to take my mind off of the pain…the migraine, the chronic daily headache, the back pain, the neck pain, the hip pain, the bladder pain, the pelvic pain…so much pain every day.

life is suffering. life is pain. life is ever changing. life is impermanence.

Catching Up After An Unintentional Time Out

A monsoon storm, the first significant one of the season, crashes a few bolts down just before the gates opened for the Annual Bloom Night at Tohono Chul Park, July 13, 2019, Tucson, AZ. Kelly Presnell / Arizona Daily Star

After my last post about shame I didn’t mean to be away so long. That post caused a lot of reactions, some people seemed to understand my feelings of shame, others got very worried about me. First I want to apologize for not answering every comment, I have been going through an awful time with my migraines and simply haven’t been able to look at the computer much, and I will admit it has put me in a depressed funk, I’m so sorry if I worried anyone. The shame I feel is not overwhelming, I know I made it seem that way in the post, but I promise it’s not all consuming. It is not uncommon for people who have chronic pain or illness to have feelings of shame mixed in with feelings of guilt, I wanted people to know if they do, they aren’t alone. And I wanted people to know, I’d been feeling it and didn’t even realize that’s what it was. Now that I realize it, it’s easier to notice it, and to fight it. I understand that I have no reason to feel ashamed, I also understand that I have no reason to feel guilty, but those feelings still come. They are less now, but they still come.

Something happened this past week that I’d like to share. I’ve needed to cancel plans with our realtor a couple of times because of my migraines, and when we saw him he said, “Hi sickie! Feeling better?” At first I felt shame, then I was angry, very angry, and I stayed angry for days. I told Stuart if he wasn’t our landlord and a good friend of Stuart’s father he would no longer be our realtor. Then I decided he needed to be educated that this is not an acceptable thing to say to a person with chronic illness, or anyone for that matter. I was going to say something to him, but my advocate of a husband beat me to it. Stuart said that he was very apologetic and said that he doesn’t know why he said such a thing, it’s not something he would normally say. He doesn’t know that I know Stuart talked to him, and he hasn’t said anything to me. I’m simply proud that I didn’t just sit back and accept being shamed. This happens to us way too often and we mostly just shrug it off, I think we need to speak up more often and educate people as to how we should be treated. This is one way I will fight my feelings of shame.

Now, a really quick update. Since July 26th, my last visit to my migraine doctor, I’ve had 2 migraine free days, 2 days with moderate migraine pain (5-7), and every other day I had severe migraine pain (8-10), along with many other symptoms, such as nausea, light sensitivity, vertigo… None of my medications were working at all. My doctor prescribed Migranal, but it took until September 4th before I finally got it (stupid insurance hoops you have to jump through) and I can only use it 8 days a month. It’s been difficult. Our 15th wedding anniversary was September 3rd, we wanted to do something special, but instead I basically missed it. Good thing it’s the marriage that counts, and it’s a celebration every day. (HA…how hokey was that?!? It really is special though.)

I saw my migraine doctor yesterday. After my last appointment I had a CTA scan, that’s a CT scan that shows your arteries, it came back normal. I had just started Effexor to try to help my migraines, and I stayed on Emgality for prevention until we saw if Effexor worked. Well, Effexor didn’t work, so we are changing the Emgality to Amovig. You have probably seen the commercials for both of these drugs. They are similar, but a little different in how they work, so hopefully Amovig will be a better fit for me. It can take up to 3 months, to tell if it’s going to work at all. So I’ll know in December. She thinks this last 6 weeks could have been so much worse because of monsoon season. She said it has been worse than last year. I know I was affected last year, but I know I wasn’t this bad.

The Fight Continues

After a 76 day migraine it finally broke on July 6th, I then went 9 days with 2 migraines that were able to be treated with rescue medications. On Monday I posted about how I believed I was back to my baseline, but I mentioned that I had a migraine at the time and was excited I was able to take rescue meds and believed they would work, they didn’t.

can you see how the right side of my face is affected by my migraine?

On Monday I took Maxalt twice, and Toradol, it eased the pain some, but did not take it away.

On Tuesday I did not use my rescue meds, I used Ginger, my IceKap, and medical marijuana throughout the day, and this kept things to a tolerable level.

I woke Wednesday in excruciating pain, with severe light sensitivity and vertigo. I could not lift my head, or focus enough even read medicine bottles, but I could find the Maxalt in my night stand by feel, so I took that. I texted Stuart by talk to text and asked him to come home to help, because I couldn’t make it to the bathroom. He came home, got me more meds (Toradol, and another Maxalt) and worked from home for the rest of the day. I also used my alternative therapies throughout the day. Wednesday was a very challenging day, but by the end of the day my symptoms had improved dramatically and I was able to sleep.

Yesterday I woke feeling pretty good, the migraine was still there, but I thought it was on the way out. I decided to greet the day with joy and immerse myself in the pool. I had a nice swim, the water always makes me feel better, but I don’t get out there enough. When I came in, the pain started to increase. Then a little while later I stood up, walked across the room, and the pain hit like a hammer, I felt a whoosh, and the room went black. I slowly collapsed to the floor and spent the rest of the day in my chair fighting vertigo. I decided to break the rules and use a rescue medication a third day this week. My doctor had given me a sample of Migranal to try, it’s dihydroergotamine mesylate (DHE) in a nasal spray. I haven’t tried it yet because my insurance doesn’t cover it, but thought I should try it since I’ll be seeing her on the 26th and today would be a good trial. I don’t know if it’s just the sample that’s like this, or if it’s always like this, but this stuff is a pain to get started. You have to break a metal seal on the bottle, pull the plastic stopper out, take the plastic cover off of the sprayer, insert the sprayer in the bottle, prime the sprayer 4 times, THEN you are finally ready to use it. Then you spray it once in each nostril, and do not sniff or tilt your head back (that is oh so difficult) and repeat in 15 minutes. That’s a lot when you are in severe pain with light sensitivity, nausea, and vertigo. It did reduce the pain significantly, however it did not completely break the migraine.

That brings us to today. It’s still there. I’m getting a massage tomorrow from an amazing woman, the last time I saw her I left in the least amount of pain I can remember. It didn’t last long, but wow, amazing. I look forward to feeling her magic.

On the 26th I’m getting a CTA or my head, that’s a CT scan where they use a contrast to look at your arteries. I also see my migraine doc on that day. I don’t think the scan will show anything, but just to be sure. I’m a little wary of it, I’ve had a lot of scans over the last 10 years, that’s a LOT of radiation. How much it too much? Since I can’t have MRIs they use CT scans for everything, that has really been a lot of CT scans.

I am so very grateful for the days I had without a migraine, it is encouraging to know it is possible. I’m also encouraged that the rescue medications are doing something, even if they aren’t taking it all away this week. Living with chronic migraine is a challenge every day, I never know what to expect. I found myself leaving the moment, fearing the future, longing for the past, I am being gentler with myself now, and being here in the now. Today is all I have, I will be here in this moment and accept it as it is. I know I can handle this moment, it is all it is, a moment, and I will deal with the next moment as it comes, not before. There is so much more to my life than my symptoms, it is time to remember that and take notice, each and every day.

Relief. The Importance of Keeping a Medication Diary

Tucson night sky

If you’ve been following my blog you know that I’ve been battling a severe migraine flare since April 20th, I’m so happy to share that I’m finally back to my baseline for my migraines and my rescue medications are once again working so I’m having sweet, sweet relief!! How did this come about? Well let me tell you, this was an ordeal! And it could probably have been sorted sooner if I had noticed something earlier, in the end, I’m glad I wrote about when I started new medications here.

One of the first things I did when all of this started was try to figure out if I anything had changed, had I started a new medication, was I eating differently, sleeping differently….anything? Well I had started Emgality, a migraine preventative, but I started it a month before this started and I was insured that it would not cause migraines. I had also started Viibryd, an antidepressant, but I (thought) I started it in March. Finally after my hospital stay in June, I went through my blog posts and found this post on April 27th that said I started an antidepressant the week before. https://picnicwithants.com/2019/04/27/little-update-from-travels-to-depression/ That was the week the intractable migraine started. The post also talks about how much better my migraines were in March after I started Emgality on February 28th. Ding! Ding! Ding! Could it be that this drug was contributing to this migraine flare? I was going to find out! I looked up the side effects for Viibryd and sure enough, one of the common side effects is “headache” (15%) and one of the lesser side effects is “migraine”. I put a call in to my psychiatrist and a message in to my migraine doctor. Wouldn’t you know it, my psychiatrist was out of the country! Ha! Glad to know my doctors had a good time traveling this summer! So, everyone knows what I did with my migraine doctor, if you missed it, you can check out my post on SPG Blocks here, but keep in mind that I was still on the Viibryd at the time. I got a message from my psychiatrist PA and they said that migraine wasn’t a side effect of Viibryd (Can you see me rolling my eyes?? I read the prescribing information handout that comes from the manufacturer, where did she get her information?) In the call I’d also asked about a couple of other antidepressants that are used at migraine preventatives to see what they thought, I was told that they didn’t go with Viibryd. Umm, I’m not going to stay on Viibryd! But she couldn’t seem to understand that. I can’t say it is all her fault, the front office there is awful! I love my psychiatrist, but it is horrible to try to get messages through, so I decided to slowly taper off of it by myself, and just wait for my appointment which is next week to discuss the rest. And guess what?! After being totally off Viibryd for about a week my migraines dropped to about my baseline, or below.

Since my birthday, I’ve taken a rescue medication once! Don’t get me wrong, I have had more than one migraine, but they haven’t been severe and I haven’t felt the need to take medication for them. At the first sign of a migraine I’ve been taking 500mg of Ginger and it has been helping (this is a great article about the efficacy of ginger in helping migraines). As I’ve mentioned before, I can’t take rescue meds more than 2 days a week, so unless a migraine is bad I normally don’t take it since I often have migraines an average of 5 – 6 days a week. I save those 2 days for days I have something planned, or days when it is very severe.

I just noticed that today is the 15th and I haven’t taken migraine meds since the 5th! Wow! Perhaps the Emgality is doing something too? I’m really thinking that the Viibryd was messing me up big time. And so far I haven’t noticed my moods dropping since I’ve been off of it. You know, I’ve been fighting a migraine today, but I think I’m going to take something for it. This is great! Maybe I won’t have to save my medication for worse days? Do I dare hope?

To close I’d just like to say that this has taught me to always mark on my calendar when I start and stop medications, and pay close attention to how my body changes. I really thought I was on top of these things, but obviously it can slip by you, especially during busy times and times of high stress. If I had been able to put together that this had been a side effect earlier I might not have suffered for so long.

Me and My Migraine

TX360 nasal applicator for SPG blocks for headache disorders

I’m happy to say I was able to get into see my doctor on the 18th, I’m sorry to say I still have this migraine. I’m happy to say I have had some relief, I’m sorry to say it has been very short lived.

When I saw my doctor we started the SPG ( Sphenopalatine Ganglion) blocks. You can see the device in the photo above. When they first started doing these blocks the procedure was much more invasive, now I can do it by myself. I’ll show you:

First you get the anesthetic in the syringe
Then you put the device together and place it in your nose (note the long tube that is shown in the main photo is up in the device at this point, not up in my nose)
Fist you just let the plunger fall, that releases the little tubing, then you press the plunger end and that releases the medication, and that’s it. Then you repeat it on the other side.

For the sake of time and because I’m feeling mighty lazy and hurting, here’s a link to an article about how SPG blocks are supposed to work: Sphenopalatine Ganglion Blocks in Headache Disorders

To break this migraine flare that has been going on since April 20th, I am to do these blocks every day for 10 to 14 days. Today is day 9, I’ve had a few hours of relief, but that’s all. I feel that as soon as the anesthetic wears off the pain returns. Sometimes it is within a few minutes, sometimes I get an hour or two, but never longer than that. I had hoped that the time would build up and up as the treatment progressed, I’m losing that hope now. There have been times that the pain has been so severe that I have considered going back to the Emergency Department, but why? I know it would do no good.

This has become very hard to talk about. People ask me how I’m doing and I find myself lying. I don’t want to tell anyone that I’m still in so much pain. I don’t want to keep avoiding social activities. I’ve forced myself to do things, but I did have to excuse myself because I was getting too sick. I’m embarrassed. I know people do not understand. I know they are tired of hearing it. I’m tired of living it. I’m tired of saying it. I’m tired of hearing people say they are sorry. How long can they continue to feel bad for me. I don’t want pity. I know they can’t understand. If this is my new normal I will have to learn to live with it. I have to learn to push through it. To be able to say, “I’m fine” when people ask, and somehow mean it. I have to be able to put on the face and be okay with that. No one wants to be around someone who is consumed by pain all the time. How do I answer these questions? No I’m not better, but I’m okay…..some days, some days I’m not okay, but that’s okay too.

I can hear it….. It’s just a headache. Is she ever going to get better? Can’t she just take something? Why doesn’t she get a better doctor? She exaggerates. It can’t hurt THAT much. She’s ALWAYS sick. I’d do this or that if I were her….massage, integrative medicine, acupuncture, chiropractic, this or that supplement, this or that diet, this or that exercise, a certain pillow, essential oils, TMJ treatments….believe me I’ve tried so much my head spins from it all and I’m still considering more!!

Can you understand why I would lie about how I’m feeling? Why it’s getting so hard to talk about it? I am just so tired.

My Story – A trip to the Hospital – Migraine Awareness Month

We all have our story, this weekend I added to mine.

I’d like to give you a little bit of background on my headache story. Two months before I turned eleven I had my first period, and my first migraine. It was labled a “menstrual headache” and I was told most girls got them. On my 11th birthday we were going to the lake to go swimming and I was hit with a nagging headache, this headache never went away. I was labeled with allergies and sinus headaches. These labels stuck for many, many years. Now my migraines have progressed to the chronic level, I have a migraine over 20 days a month, and it seems they are becoming intractable. The medications I used to use are not longer working, and I’ve tried many alternative treatments. My daily headache is never below a 3. I also have cluster headaches that normally show themselves in the Spring and Fall, but sometimes more often. I haven’t found any treatments for the daily or cluster headaches. Most days I haven’t given up hope, but I must admit that some days I feel like I can’t go on. That is my history in a nutshell, now for the story of the weekend.

Today is the 54th day of a running migraine. There has been no relief. The pain has been variable anywhere from a 6 to a 10+ (there have been times the pain has been greater than I could imagine).. No medication has helped to relive my symptoms which include much more than pain. When most people think of a migraine they only think of the pain, but it is so much more than that, I experience numbness on the right side of my face, sometimes traveling down my arm, my face sometimes droops, my vision blurs and will double and dim to the point I can’t see, I have extreme light sensitivity, and sensitivity to smells and sounds,, I experience dizziness and vertigo that varies in intensity, and extreme nausea….these are just a sample of the added symptoms that I can experience during at migraine, others can experience different symptoms. Migraines are so much more than a headache they can even occur without any pain at all.

At present my neurologist is out the the country. I messaged her office last week and told them my situation and they suggested I go the the Emergency Department to get a “Migraine Cocktail” and some hydration. I voiced my concern about the torture that an emergency department can put me through, the bright lights, the smells, the noise, the wait….but I was assured if I called and reserved a time to come in I wouldn’t have to wait long. We did call and set up a time of 4:30pm on Thursday, I arrived 10 minutes early and was triaged right away, then I waited SIX hours before I was seen. I realize I was low on the triage list, and they had a number of emergencies but sitting there in extreme pain was absolute torture. I almost went home. I had a seizure in the waiting room and no one paid any attention. I do have to put in there that we were in a quiet waiting room with dim lights because of my light sensitivity, but after they were informed, a tech came and took my vitals, but no one else came. I decided it was time to leave. Stuart went to tell them we were leaving and at that time they realized how long we had been waiting, and they got me to the top of the list.

After I was taken to a room I was surrounded by extremely nice nurses and doctors immediately. They made a plan and had medication going within just less than an hour. The doctor told me they had to start on the first cocktail, but he didn’t think it would work on me, because he had a feeling I was a tough case. He said after that they would do a second cocktail and if that didn’t work they would admit me and there were all kinds of things they could do then. Neither of the first two cocktails worked, although the second one did help me sleep. I was admitted, after many hours of waiting for a room

I was started on a new cocktail that was very much like one that I had in the ED, but they wanted to add Imitrex (sumatriptan), I refused this medication because it causes me to have tachycardia. I soon saw the neurologist and he put me on a cocktail of DHE, Toradol, Depakote, and Magnesium every 8 hours for 24 hours. He then told me that if it did not work he could do no more and I would be sent home to suffer there instead of suffering in the hospital.

The cocktail knocked it down to a moderate level, until they stopped it. After they stopped it a new nurse came on duty who had a scent that triggered me. My migraine shot up and I was terribly sick. It did not come down, and I was sent home “to suffer”.

Today I woke up in intense pain that continued to build, within an hour it was so excruciating it was beyond what I could imagine a migraine could be. I was not sure if the pain would diminish. If it hadn’t I would not have been able to carry on. I had to admit my thoughts have gone there, but migraine can kill. All I can hear in my head is, “You can SUFFER at home”

My doctor is the only headache specialist in this area. According to the American Headache Society currently only 416 specialist are certified by the United Council for Neurologic Subspecialties (UCNS) to treat an estimated 36 million migraine sufferers over age 12 in the United States. I’m lucky to be able to see one, but when she is unavailable it is very difficult. She will be back in the office on the 12th, however she has jury duty the first week of July, I don’t have an appointment until July 26th. The doctor I saw in the hospital said he was going to talk to her office to see if he could get me an appointment earlier. I doubt that will happen.

There is a headache clinic at the Mayo Clinic in Phoenix. If my doctor can’t help me I’m considering going to the clinic for an evaluation It is 110 miles away. Does anyone have thoughts on this? I’ve heard some conflicting results from friends about their experiences with Mayo, I’d like to know if anyone has any thoughts.

This is Migraine Awareness month therefore, I’ll leave you with a few more facts about migraine.

  • Migraine is the 6th most disabling illness in the world
  • Migraine often runs in families.
  • Migraine is often misdiagnosed as tension or sinus headaches.
  • Migraine also affects children.
  • Pain does not have to be present during a migraine.
  • More than 4 million adults experience chronic migraine with over 15 migraines per month.

If you know someone with migraine, be gentle, try to understand, Sometimes it can change you. It can steal your life. It doesn’t mean they don’t want to spend time with you, often it means they can’t. They still love you. Love them.

Migraines Suck

Warning: this post may contain whining, feeling sorry for myself, and just plain complaining, but most of it is simply the way things are right now….it sucks, I accept that, but no I don’t like it and I wish it were different.

The last two weeks I have experienced some of the worst symptoms I can recall in many years. I woke up one day a couple of weeks ago now, feeling pain creeping up the left side of my head, it felt like my brain was hurting, inside my skull, my brain was being squeezed. It started on the left side and crept up over my head until it covered my whole brain, I could not help but cry out. I woke Stuart and he could only hold me. The intense feeling of motion, the pressure in my skull, the extreme nausea…it was horrible. Finally it eased to the point that I was able to simply pass out. Then it came back! This happened three more times. I decided sleep was not going to help, so I got up. It continued to happen throughout the day, no matter how much medication I took. Nothing worked. That was the beginning of my walk deeper into hell.

I’ve barely been out of the dark, the light sensitivity has been more intense than I’ve ever experienced it. Often I have not been able to get out of the dark at all. For days on end I couldn’t look at my phone or computer. I’ve been having the feeling of intense movement all day, with visual vertigo on and off. My vision will tilt, double, and is constantly blurry. For 2 solid days I could not focus enough to see much of anything, I just sat in my chair curled up in a ball, with sun glasses on, a towel on my head to further help block out light, an ice pack on top of that, staring at the TV watching shows that I’d seen over and over, just so I knew what was going on, since I couldn’t really focus enough to read the captions and often couldn’t even see what was going on at all. It’s bad enough to be in severe pain and dizzy, but to be forced to have nothing to distract you from that is torture. I tried to meditate, I tried to make up stories in my head, I tried to think of nice places, nothing worked. I was trapped sitting in a chair with my pain, confusion, and vertigo with nothing to help relieve it. I knew at that moment, if I had to live like this forever, I wanted to die.

I continue to fight this. My baseline headache never gets below a 5 now (I have daily headache all the time that normally hovers around a 3 or a 4). Every day the pain gets to at least an 8 for a few hours, and will spike to a 10 on and off. I continue to have all the other symptoms, sometimes they are worse than others, but they are always there. The nasal spray (Zomig) she gave me to try did not work. It’s kind of obvious that triptans have stopped working for some reason. I believe my head has gone crazy because it has gotten no relief. Normally I do get some relief from triptans, so the nerves have some time to reset, a little at least. (my 10 precious days a month when I can take meds gave me a few hours) Now there has been no relief so the nerves are constantly firing and just going crazy. My neurological and vestibular system are on over drive, what is triggering me this much, I have no idea, all I know is that my head is a mess, and I’m miserable.

Now my doctor is out of the country until June 12th, and she has jury duty the first week of July, so she had to reschedule my appointment to July 26th. I admit when I heard this I had a complete break down. I sobbed and sobbed, which of course caused more pain…ugh. But them I thought, I’ve lived with this for so long, a couple more months will not kill me, and I can go to the ER if I absolutely have to. I must admit though, I’m afraid to go to the ER, they treat migraine patients like drug seekers or fakers, the bright lights and noise there is torture, the stress of waiting hours….it makes me worse before they make it better. It’s so scary.

The good news is, her office did get the sphenopaltine ganglion block approved, so I will be getting that when I see her. It’s very interesting, she will actually be teaching me how to do it so I can do it at home. They are also working to get the Migranal approved, it is the Dihydroergotamine (DHE) in nasal spray. I have DHE injectables at home. I haven’t used it because you can’t use it in the same day that you use a triptan, and I had gone over the amount of days I can take meds for the month. When I’ve had intractable migraines in the past, not with the extreme symptoms I’ve been having lately, my previous doctor prescribed a DHE protocol of having 3 shots a day for 3 days to try to knock it out. We are going to start that today. Hopefully I’ll get some relief.

This has taken me two days to write and I’m sure it doesn’t read quite right because my brain is mush, and I know there are things I’ve left out, but I really tried. I even put in a couple of links. Woot!