Week and a day in review

I didn’t do it. I intended to do it. After I missed one day, I still thought I would do it, but didn’t write a single journal entry this past week. I’m such a slacker! I still kept up with my migraines on the Migraine Buddy app, so at least I have that information. Now let me share some of what’s been going on this past week.

On Saturday I had a vestibular migraine so debilitating that I could not walk without assistance. I stayed in a dim room (I really want black out curtains), in silence, with ice on my head all day. (The symptoms I was experiencing included vertigo and dizziness, light sensitivity, noise sensitivity, scent sensitivity, nausea, cognitive impairment, blurred vision, and numbness and drooping of the right side of my face. It was a cloudy icky day.  Finally around 8:30 that night it started to rain.  When the barometric pressure eased so did my migraine, just in time for bed.

On Sunday we went to have brunch with Stuart’s Dad and his wife at her home in memory care. It had been too long since we had been there for a visit, it was nice, but we sat in the little restaurant for way too long for my physical comfort level. By the time we left my back was hurting pretty bad, and I was starting to get pretty grumpy.  I had been feeling so much better since starting the new anti depressant, but Sunday I was touchy, sad, and down on myself. I knew I missed a dose on Friday, but dang. Then that night I realized I missed another dose, I was so angry and ashamed I couldn’t even look at Stuart. (overreacted?)  When I saw my psychiatrist on Tuesday I found out that the prescription she called in was for the wrong dosage, so for the last week I have been taking half the dose I was taking the week before. Oops. So no wonder it really messed me up when I missed a couple of doses!  I’m trying new strategies to remind myself to take my meds with breakfast!  So far so good!

Back to migraine talk. I mentioned in a previous post that I messaged my doctor and asked about a new rescue medication because the Maxalt isn’t working any more. I finally heard back from her, there was a problem with their patient portal, after it was fixed I heard from her right away and we’ve talked a couple of times since then, so I feel better about that. Here’s what’s going on there: She suggested one of two things, trying Zomig nasal spray (it is another triptan, but could help more in this form) or try Migranal nasal spray (it is DHE in nasal spray form). I’m trying the Zomig because my insurance will cover it (still cost a lot), my insurance will not cover the Migranal, however, if the Zomig does not work we will appeal to the insurance company to see if they will cover the Migranal. She is also trying to get another treatment approved, a Sphenopalatine Ganglion (SPG) Block. The SPG is a group of nerves linked to the trigeminal nerve, the main nerve involved in headache, and is located behind the nose. They use a catheter through the nose to apply lidocaine to the SPG. I’ve been reading about it, and I’m not sure exactly how my doctor is planning on using it with me.  From what I’ve read it has been shown to reduce chronic migraine frequency and pain severity over a 6 month period after having the procedure done twice a week for 6 weeks. So yeah, I’d like to try that.

The above was written last night, May 16th, I thought I’d finish this up this morning and post it, but today did not go as planned, following is a recap of today.

Today started out pretty dang good.  I decided to try to start the day completely silent to see if my migraines would hold off for longer.  It was a nice way to start the day, the silence kind of forces me to be more mindful. I ate breakfast outside, sat out by the pool, did my breathing exercises, and started to do more of my yoga exercises, but the sun was too bright. I was still feeling good so I decided to sweep the front porch and patio. Gaah! That was the biggest mistake of the week! I got about half of it done when the pain in my back started to get too much, I slowed down and tried to get to a good stopping point. Then my vision got wavy, the pain started in my head, and my back seized. Oh boy. I dropped everything where it was and got inside as quick as I could so I wouldn’t fall down outside. Things calmed down and I thought things were going to be fine, I just had to rest. After about an hour things were going good. I was ready to get up and maybe do something, then the vertigo started, and I was not going anywhere. The rest of the day has been filled with these on and off sensations of vertigo and pain.  I wanted to try the Zomig, but I’ve already taken medication 7 of the 10 days I’m allowed in a month, I decided to save it for days when I have to be out somewhere, or really want to do something fun.

Speaking of something fun, we are planning on going to the botanical gardens this weekend, it is supposed to be a very nice weekend for it.  Cross fingers and toes we can make it there, I really want to go to the Butterfly House, and it closes for the season soon.

the photo above is by the pool, it was taken this morning.  It is my favorite spot in the yard, especially this time of year with the yellow, red and purple blooms.

Advertisements

Journal Days of May

from my walk on Sunday – Prickly Pear in bloom

This month I’m going to do something very different, I’m going to try to keep a running journal of the month, so you might get a bit tired of me.

The idea behind this is two fold, I want to pay attention to my moods, and really see how this new antidepressant is working; and I also want to have a goal of accomplishing at least one thing a day, no matter how small that one thing is.

I’ve been feeling pretty low lately about how little I’ve been able to accomplish because of my pain, I want to prove to myself that I am more than my pain and accomplishments come in all sizes and all should be celebrated. I’m hoping by committing to posting about this on a regular basis I will force myself to stop thinking of the things I can’t do and pay attention to the things I can.

Today I woke with the continuation of a migraine from yesterday, that continued from the day before. I had an appointment with my therapist at 11am so I took a Maxalt and drank a little caffeine hoping it would take the edge off and make the day more bearable, unfortunately, it didn’t. In the waiting room there was a lady sitting directly in front of me and one sitting beside me, they obviously new each other and were having a conversation in normal tones. I was struck by the fact that I could not understand more than the rare word here and there despite the fact that it was a very quiet room. Once again I wondered how I could meet people and socialize. When I left I planned to go by the grocery store to pick up a couple of things but the pain was so great I thought I would throw up before I made it home. I took a second Maxalt when I got home, but again, it simply did not work. I decided to message my doctor and ask if there is another rescue medication I can try as Maxalt seems to have stopped working. I am still hopeful that the Emgality will help, but I need something to get me through the moment.

Today I made it to my therapist appointment! I had a lovely mindful moment with my dog, and a few other mindful moments too. I attempted to do a Body Scan meditation, but I didn’t finish. I will try to do it again before I sleep tonight.

I’m trying hard to not focus on the fact that I can’t cook dinner tonight, or get the dishes out of the sink because my back and head hurt so damn bad. So I’m avoiding the kitchen.

Mini me update

Daffodil – Charlotte, NC
Wild Mexican Poppy – Tucson, AZ

I’m Still Here I didn’t mean to scare anyone with my last post, no I’m not closing my blog, I have just been feeling a little low lately and it’s been hard to put words together and write coherently. A little depression has gotten hold of me, but I’m coming out of it. I tried looking at everyone’s blogs today but my reader is not working right. I’ve been terribly homesick, I have a friend back home who has been extremely ill for months now and I can’t be there with her and it’s breaking my heart. I can only hope that my virtual support is helping a little. My sister hurt her knee pretty bad, I’d like to be there for her, but alas I can’t. I’m kinda sure that she wouldn’t allow anyone to take care of her, but I’d sure like to try. She’s taken care of me time and time again, it’s time for me to be the carer. And I really miss Spring in the Carolinas. Spring in the desert is beautiful in it’s own way, but it’s not like it is in the Southeast. There isn’t this sudden explosion of life everywhere! You open your door and flowers have bloomed overnight. Trees are suddenly green. It’s magical. I didn’t think I’d miss it so much, but I do. Stuart says he will miss the fall, so we have decided to go to Charleston, SC for our anniversary this year in September. Hopefully he can see a little bit of Fall weather, and we can see people we love. Looking forward to that makes me a bit less homesick and I think it helps my depression.

The Move and Service Dog About us moving…no we aren’t moving far away, we are still going to be in Tucson. This is just an inconvenience, but how we were told about it really pissed me off. Right now we are renting a house that we didn’t expect to be renting but a few months until we found a house to buy, but it ended up that we needed to wait a few months before we could commit to buying a house. We can start looking again in June…or July, I don’t remember which. Our landlord has been working on the guest house and told us he did not expect to have it completed by the time we would need to move. On Friday I was standing out by the pool talking with him for a long time about us going to meet with a dog breeder about getting a dog to train for my service dog, this has been in the works for a long time and he knew all about it, he has been excited for me. Nothing was mentioned about the possibility of then wanting to sell the house soon, or us having to move. That evening our utility bill was left on our door with a note on the envelope that said our lease ends April 30th and the guest house should be finished by then, so we need to discuss options. My stress meter jumped WAY HIGH! The thought of moving again and then having to move again a few months after that, simply threw me for a loop. I don’t blame them, it is a financial decision, not an emotional one, but it sure leaves us in a lurch. There is a possibility that we won’t have to move. They need to do some work on the house that may go into the summer, and they believe that if they don’t sell during the summer they will miss their window for the best profit because it has a pool. People don’t like to buy houses that have pools in the winter….weird. We will know in about a week, if we do have to move we’ll have at least a month to move. We will then have movers move our stuff to a storage locker and move into furnished corporate housing for a few months, that way it’s really only one move. We’d just just have our clothes and stuff, everything else would be packed and ready to go. After we came to that decision the stress was totally lifted. We decided to wait on getting a puppy right now to train, hopefully we can get one this winter. I’m still looking for just the right dog for me. I will be training my dog through HandiDogs here in Tucson, AZ. They are a hands on training facility helping you to train your own service dog. I will have a hearing and balance dog. I will talk more and more about this experience as it happens.

Migraine Specialist I saw a new neurologist who specializes in headaches. She was wonderful. She had read all of my chart before meeting me, she asked all kinds of questions that I can’t remember being asked before. Like “does sleep make your migraines go away?” I’ve had it suggested to me to try sleeping when I have a migraine, but no one has ever asked me if it worked. It doesn’t. I wonder what that means. She asked if I ever get a migraine when having a bowel movement. Sometimes. So many questions!! At the end of all the questions and realizing that I’ve tried everything out there and still have over 25 migraines a month we decided to try one of the new CGRP blocker migraine preventative medications. I chose Emgality because it has been shown to help cluster headaches too, but it is not approved by the FDA for that use yet. This medication comes in an injection that I give to myself with an autoinjector. I had the first dose on Friday, March 29th. I will write a post soon explaining more about what this medication is and my experiences with it. Please wish me luck with it. My doctor told me that her story is much like mine. I not only have chronic migraines, I have a constant daily headache that I’ve had since I was 11 years old, the day I first started my period I got a headache that never went away. My doctor told me that with this new medication she still gets migraines, she gets much fewer migraines, but she does get some. However, she no longer has her daily headache. At that moment I burst into tears. I was so thrilled for her, and the thought of not having pain every day constantly, I simply cannot fathom that.

On a completely different note, I’m getting my hair cut on Saturday. You may not recognize me. I have long naturally wavy, slightly curly hair, but it’s fine. It used to be thick until I went through menopause, sigh. The length is doing nothing for me. I wear it in a ponytail most of the time. So I’m getting it cut! Not sure exactly how short yet, I’m going to need advice from my stylist, but I think it’s going to be pretty short. I’m getting new glasses soon too, I’m just going to look so different. A new me.

Well, I’m up late because I’m fighting a gastritis attack, again. I finally ate some real food today for the first day in a week, and now I’m so nauseous I can’t sleep. I’m off to take a Phenergan and try to rest.

“Change is the only constant.” ~Heraclitus

Playing Keep Away with Medication

I’m so fed up.

An article found in the American Council of Society and Health gives “A Brief History Of The Opioid Epidemic” it list what has transpired since the mid-90’s that gets us to the point we are now. Number 6 is the most important “Deaths from prescription opioids alone are rare”. Yet this is what has been attacked. People are killing themselves now because they can’t get their medication to help relieve their pain. I do acknowledge that opioids were over prescribed for a while, the article explained some of that reason. I remember getting prescriptions from multiple doctors, being told to fill them if I needed them. Often I didn’t, but I can see where that could fall into the wrong hands, and that was the biggest problem, they often ended up in the wrong hands. However, this does not mean you should stop prescribing, or drastically reducing, medication to those who DO NEED IT. People are now killing themselves because they have no hope of pain relief. That is a travesty. We as a nation should not be letting this happen. We as human-beings should not be letting this happen.

image by pixabay.com

Caz wrote on Invisibly Me this week that she was not able to get her regular B-12 shot because they are cracking down on it due to
 the ‘craze’ of ‘fashionable B12 injections’ celebrities touting. Really? B-12?!? What does this say about us, we keep people who need a vitamin away from them because of a fad? Jump over to her blog and read her story, it is eye opening.

If it’s not the government it’s the doctors keeping us from our medication.

In my case it’s my migraine doctor (or insurance company, I’m not sure which yet). I had to find a new migraine specialist when I moved to Tucson. I made the appointment before we even moved. I’ve seen him 3 times so far, each time I’ve had issues with him.

During my initial visit he told me he didn’t believe I had every type of headache I have been diagnosed with, until I said, “I don’t know, that’s what they told me at Duke”, then he changed his tune (he also seemed to check over everything with Stuart, to make sure he agreed with that I said, like I would make this up?) My second visit was Botox, which I didn’t really want, but he wouldn’t prescribe the new headache prevention medications until I tried it, at that visit he boasted he could do the injections in less than 2 minutes (very professional there huh?). The third visit was a Botox follow-up, we were interrupted so they could ask if he would see someone who arrived late, he said he would, then when the nurse left he proceeded to tell us how he’s in such demand he shouldn’t put up with things like that. I had to reschedule my last Botox appointment because of the infection I was fighting. My next appointment is on the 24th, I’m refusing the Botox.

I don’t know what happened, but I just got my Maxalt refill and it is for FOUR pills for a MONTH! I have a headache all the time, every day. Because I’m only supposed to take medication for 10 days a month to prevent medication overuse headache I tend to wait until my headaches get to an 8 or 9 before taking a Maxalt, if I don’t then I will run out long before the end of the month. This often means that I will have a severe migraine for days, or weeks, because I’ve waited too long to treat it.

The prescription is normally for 9 – 12 tablets depending on the doctor (my last doctor wrote it for 18, but she was in a headache clinic where they only treat headaches and could get insurance to cover it.) Maxalt is to be taken at the start of a migraine, if you do not have relief in 20 – 30 minutes take a 2nd one, not to exceed 2 in day. So if you end up taking 2 for a headache and you get 9, you will find relief for only 4 headaches and pray the next headache only needs one. When you have chronic migraine like I do, that means you have a migraine at least 15 days a month, did I mention I have a headache every day? So, even if I get relief from one pill each time that still leaves me with …heck so many migraines without medication I can’t even think, that really sucks.

So FOUR are only going to treat 2 – 4 headaches, see the problem?

Right now I honestly can’t say if this is an error, or if the insurance company did something screwy, or what. If the insurance is the problem then that’s a whole other issue, which is also a thorn in the patient’s side.

We should never be made to feel that our medication is being held hostage.

No matter the reason, the 24th will be the the last time I see this doctor.

I am seeing a new specialist in March who is with the Center of Neuroscience. It took me over 3 months to get in, but I’m okay with that if she is as good at my headache specialist at Duke and Carolina’s Headache Center. I’m really hoping to try one of the new migraine prevention medications.

**Everyone should read Kara’s comment to this post it is excellent.

Medical Marijuana, how I got my card

*this is solely my experience, it may be different for others.  I live in Arizona, the requirements can be different for different states, and the type of product offered can be very different also.  You can read a good article about the whole process on Leafly, here.

medical card

20180925_111941.jpg

 

As soon as we moved to Tucson I started the process of getting my Medical Marijuana card.  I received it on my birthday (July 2nd).  Here’s the process I went through:

First I had to get an Arizona Driver’s License, thankfully I kept my license up to date even though I hadn’t driven in years.  To get my license I had to prove my identity and prove I live here, I took a copy of our lease and mail that had been forwarded from our previous address.  Within an hour after arriving at a DMV I had my temporary license in hand, after 2 weeks I received my official license in the mail.  Very shortly after that I went in to apply for my Medical Marijuana Card.

To obtain a Medical Card from the Arizona Department of Health I needed to take my medical records that proved I have been dealing with one of the approved conditions on the list for over a year, in my case severe migraines, to a doctor to see if I qualify.   To find a doctor who will do these referrals was pretty easy, I just looked in the local free paper, there are plenty of ads (I actually think this is kind of weird)   I saw an ad that looked a bit more professional than some of the others and emailed them (as most of you probably know, I don’t use the phone because of my hearing loss).  The doctor I saw is a Naturopathic Doctor, she reviewed my records briefly and checked my vitals.  She told me a little about Medical Marijuana, and told me I should receive my card in a couple of weeks.  Oh, I also had to pay a fee to the doctor and a fee to the state, the doctor fee can vary, the state fee is set.  You can get the recommendation from the doctor and then file your own paperwork online with the health department, but I decided to pay the extra little bit to have the doctor’s office do the filing for me, they even took my photo for my ID.  So to break down the cost, the office visit was $100, the processing fee (to have them file all my paperwork) was $20, and the state fee is $150 so the total cost to get my the card was $270.  The state fee is $75 for those with a SNAP card (Supplemental Nutrition Assistance Program)

20180925_111619-e1538168714276.jpg
Ads found in the Tucson Weekly  (I’m not against recreational use, but if this is a medicinal only state, then treat it like medicine.  The ads like those above give medical patients a bad name.)

 

If you are interested in even more details, this link will send you to the center where I saw my prescriber.  Actually it isn’t “prescribed”, it is recommended, doctors honestly don’t have enough knowledge about the efficacy of marijuana (the different strains vary in what they do, some are sedating, some are energizing, some help pain, some cause paranoia…..there is no way to actually just prescribe marijuana like you do other medications, you have to know all the different aspects of the different strains and delivery methods, therefore they really have no idea how to dose it.  The center that I went to offered a 15-minute Complimentary Consultation to discuss the available types and delivery method for cannabis, and suggested strains to help with my condition.  They also suggested a dosing schedule.  I felt this visit too short, however, since I had already done a lot of research I didn’t need a lot of guidance (or so I thought), but I welcomed the advice on strains and dosing.  The center also offers a couple of workshops, one teaches how to make edibles because it’s much cheaper to make your own, (these are an additional cost).

After receiving my card I visited a Dispensary that is located close to my house. (since then I’ve done some research on the different dispensaries in the area and I will make sure to take advantage of the best deals, it kind of blows my mind that they offer sales, I thought all the dispensaries would have the same prices and the same products, but it can vary greatly.  I should note that the dispensaries are non-profit, however, some also sell paraphernalia, I don’t know if they are allowed to make a profit on that, it seems like they should.

When we arrived at the dispensary someone greeted us at the door and welcomed us in.  We walked into what appeared to be a somewhat large lounge, the actual shop was in another room that had to be opened for me to go in.  Stuart was not allowed in the shop with me even though I told them I needed him to hear, to compensate they had a pen and paper so we could communicate that way if needed.

A very sweet girl met me at the door and gave me a tour of the shop.  She pointed out a cart that contained CBD products only and told me that anyone could come in and buy those, they simply took the cart out to the lobby and had them shop from there.  I noticed that she kept pointing out the strains with the highest amount of THC, they are more expensive, so I was wary about taking her advice as to what I needed.  (I have since been back to this dispensary and another and found the people I spoke with very knowledgeable and were able to really help me figure out which products to try.)

There are so many different types of delivery methods, smoking, vaping, tinctures, transdermal patches, various edibles (from cookies to hard candies), drinks, and concentrates….so much it is mind blowing.  The doctor I saw recommended I use a tincture and vape.  A CBD tincture 10 mg, 3 times a day, as a migraine preventative; and a CBD:THC 1:1 tincture to help me sleep.  It was also suggested I vape for acute pain, since I have a dry herb vaporizer I was given the name of a few strains that would help, I was also given the strength I’d need if I wanted to use an oil vaporizer.  This was a good starting point, but I have a lot more to learn.  This article can give you more of an understanding of what CBD and THC are and what they do: “CBD vs THC: What’d the Difference?”  (I have found the best information on Leafly.com)

 

In my next post I will tell all about what I’ve tried so far, and things I wish I knew before I started this journey.

****NOTE****  I admit I’m very nervous about writing this article.  Please be kind to me, do not treat me as a drug seeker.  I am not looking to get “high”, I simply want the pain to lessen.

.

Finally! It Arrived!!

Just in time for Ten Things of Thankful I received something to be very thankful for indeed!

My gammaCore arrived!!

20180821_213406
for more information on gammaCore visit their website by clicking here

I’ve been having a heck of a time with fatigue and migraines, so this little gem was met with much joy!  I’ve used it a few times already today, I can’t say for sure how much it has helped yet because I used it in conjunction with other medications, but I can say that my migraine did get better!  Yay!!  There’s a lot of drawbacks about this little thing, like how long it took to get it here, it isn’t rechargeable so you have to get a new one every month, (that’s a lot of garbage!) and it stops working in a month even if you haven’t used it hardly at all.  They really have a racket going on here….but if it works, how I can not use it?  I’ll do an update on it soon!!

There are a few more things I’m thankful for this week:

  • the kindness of friends (and some strangers).
  • not having to go to work every day, because I wouldn’t have been able to lately.  (never thought I’d be thankful I’m disabled…I’m just differently abled)
  • we’re looking for a house, this is not a fun experience, but I’m so grateful we are able to buy our own home and hopefully soon we will find the perfect place for our family.
  • we were able to babysit last week and we didn’t die, nor kill anyone. hahaha
  • my niece is reading a book and telling me all about it. (she literally just texted me before she went to bed.  She’s 10)
  • I didn’t throw up in public.  Okay that sounds strange but we were out on Sunday and I took a swallow of water while we were walking and suddenly I got choked.  I coughed and gagged and water spewed out of my mouth and nose, I was so embarrassed, but I didn’t throw up, that was a victory!!
  • we have A/C.  We live in Tucson, AZ; if I didn’t have A/C I would die. That’s not an exaggeration.
  • I’m not homeless.  There is a huge homeless population here, it really makes me realize how very lucky I am.  (and it annoys the heck out of me that so many people here assume that all homeless are addicts!  Really?  Wake up people!  It can happen to anyone!)
  • I was able to get a topical ointment for pain from the medical marijuana dispensary today.  It is all CBD, so anyone could buy it, but I like getting it from the dispensary because they independently test everything so I know it has what is says it does in it, and the girl that I talked with there today was so knowledgeable!  I’m learning so much.  I’m hoping the ointment will help me sleep tonight, my wrist/thumb have been keeping me up at night.  (Don’t worry dear friends, it’s healing nicely, it just takes time).  I also got some gummies to help me sleep, they do have THC in them so unless you are in a legal state you couldn’t get them.  I’m very grateful I live in a legal state.

 

That’s all for now.  I have been writing a post on my experiencesgetting my medicinal card and my first trip to the dispensary.  I’m sorry it is taking me so long, recovery has been easier than I expected, but it has made me very tired; it is a struggle to get things done and sometimes the pain won’t allow me to type long.

Thank you all for hanging in there with me.   I’m very thankful for you.

What are you thankful for this week?  I’d love to hear about it.

Check out the rest of the participants in the TToT challenge, and perhaps join us, reading what others are thankful for always fills me with such joy.

TToT

Stress? Who’s stressed?

I swear if I hear one more person say that something that is wrong with me is due to stress I will scream!  I have felt this way for many years.  When I was having vertigo daily they said it was made worse by “stress”.  When my asthma went crazy, they said “stress”.  When I had severe GI issues for months, I was told I needed to reduce my “stress”.  You know the last time I looked stress does not cause Meniere’s Disease, or allergy onset asthma, or fructose malabsorption.  Don’t get me wrong, I know stress can do a number on you, but I feel like it’s a catch all.  If they don’t know, then it’s stress, after all if they can’t fix it then it has to be MY FAULT.

Finally, I am having issues that I think may actually be caused by stress.  I will be the first to admit the last few months have been pretty stressful.  My mother-in-law was placed in long term care, we moved across the country, I left my sister with the understanding that we may never see each other again, Stuart started a new job, I’m finding new doctors, I have to have surgery on my wrist on TUESDAY, I don’t know how long to expect to be out of commission to recover from said surgery (I hate being so dependent, not having use of my dominant hand is hard), we’re looking for a house (and not finding what we want), we’ve been looking at cars (for me),  I’m starting to drive again, we’re living in a small house that I can’t get organized because we don’t want to get too settled since we will be moving again soon, I’m suddenly surrounded by family (some of that’s good, some not so good)…………….WOW. writing all of that out was stressful, and I haven’t listed everything.

20180718_131709
This is me with a migraine, the right side of my face gets all numb and droopy.  #realmigrainepose

For over a month my migraines and cluster headaches were much, much worse, is this because of the stress, or is it causing more stress….short answer, Yes.  I must say though, for the past week they’ve been getting better, I think it’s because of the medical marijuana I’ve started using (more about that soon).  I’m having some GI issues that just don’t want to stop.  (it’s even waking me up at night, and I haven’t made it to the bathroom a couple of times…is this all from stress, who knows, but I doubt it’s helping),  I’m irritable, quick to anger, and just plain grumpy.  I’m overwhelmed and in pain, and I’m taking it out on everyone else.  I don’t like myself right now.  My anxiety has increased, but it’s not too bad, yet.  I’ve been a little depressed, but it’s not all consuming.  So, there’s a lot to be stressed about and it’s kind of taking it’s toll.

I’m trying to meditate every day, but it seems the more stressed I am the harder it is for me to meditate.  I feel like I’m not being very mindful either.  I’m living too much in the future.  We are buying our forever home and I keep thinking things like, “I don’t want a pool because I don’t want to keep it up when I’m 70”, “I don’t want any stairs because I might get sicker again, and I also we might now be able to climb stairs in a few years.”, and my personal favorite, as I’ve been going though things and deciding what to keep I keep thinking, “will anyone care about this when I die?” ….I just turned 55, I’m not that old, but I sure am living like I am.  (except I want a cool yellow car, that will keep me young)  I worry about how M’s condition will advance.  I worry about Dad, he spends all his time at the home what M, and she’s beginning to have moments where she doesn’t remember who he is exactly.  How is he going to handle it when she no longer knows who he is.  Then I think about what M’s daughter said, she told me about another relative who had Alzheimer’s and how they told her that they may not know who she is, but they know they love her.  I think Margaret will always know she loves Dad.  It breaks my heart every day though to see this amazing woman slip away.  (she just turned 77)

I really want to get back to focusing on living in the moment and simply not worrying about the rest.  Why worry about the now? It’s going to be gone in an instant.  I want to invite joy in my life.  I want to step away from the drama that I’ve found myself dropped into.  I need to nurture my inner self.

Little update on me: My surgery is scheduled for Tuesday, the 7th.  It is a minor surgery, I’m not even put under general anesthesia.  They just put a little incision on the inside of my wrist below the thumb (on the side, not the palm) and snip a little to release the tendons.  When I saw the doctor in Charlotte, NC, he told me that often when the injections don’t do anything that there are actually 3 tendons running through the sheath instead of 2.  He said they don’t know why but it often doesn’t show symptoms until middle age.  This is even more probably since I have it in both wrist, luckily the injection worked pretty well in the left wrist though.  The doctor here didn’t mention it, but he did comment that the orthopedics department at Atrium Health (formally known as Carolinas Heathcare System) is one of the best in the country.  (right now they are ranked number 3)  So I kind of believe the doctor at CHS.

My migraines have improved some since I started using medical marijuana.  Most of what I’m taking is a very high grade of CBD oil.  I will write a post soon telling you all about my journey through getting a card, learning what to buy, and my experience in the dispensary.  The gammaCore has still not arrived.  The doctor’s office dropped the ball when ordering it, then they didn’t put in the request for the free trial for the first month.  (they did change offices this month, and my doctor is new and has been the only doctor in the group to prescribe the gammaCore, all of those factors led to the good up)  The gammaCore company called Stuart last week and told him that it should be no problem getting it approved by my insurance.  If that is the case, why haven’t I received it yet?  I sure could have used it this past month, the cluster headaches have been killer (literally, if I thought I had to live in that kind of pain all the time, I’d kill myself.  Cluster headaches are called Suicide Headaches, because of that very reason, people will kill themselves to get relief.  I start Botox in about a month; I was supposed to start on Thursday, but that was my original surgery date so we cancelled it.   The monsoons are causing a lot of severe barometric changes almost daily, I’m sure this has been one of the reasons my migraines have been so bad, so hopefully they will get much better in a month of so, when the monsoons are over.

 

It’s late and I have a headache, so this post was not even read over to check for errors, please forgive any typos, grammar errors, or other atrocities.

 

 

 

 

Migraine Awareness Month, my migraine update

migraine awareness
I don’t know who to credit for this image, but it is so true I had to use it. If you know who I should credit, please let me know.

June has been Migraine Awareness Month.  I had planned to do a few posts about migraine, what it is, who gets it, how disabling it can be, new treatments….ect… unfortunately I’ve been having some severe migraines this month and simply haven’t been able to focus well enough to write and get all the facts straight.  It’s not just the pain of the migraine that has stopped me, it’s all the other symptoms that go with it, the fogginess, nausea, insomnia, sensitivity to light, sound and smells….I simply can’t concentrate or get things done.

New Migraine Doctor – On Tuesday I saw a new migraine specialist.  He’s with Banner Health/University of Arrizona’s neurology department.  First impression, he was pretty thorough, and seemed to know what he was doing, however, there were some things he said that I felt were just rude, but it may just be his sense of humor that I didn’t get.  For example, after we went through my history he looked at hubby and said, “Did you know she had all these issues before you married her?”  Then he laughed a little and said he was joking, but honestly that did not make me feel good at all.  But he did take the time to go over my records and listen.  At first I felt that he was going to be a butt, because when I told him all my different types of headaches (chronic migraine, vestibular migraine, cluster headaches, and Intracranial Hypertension), he said, “I don’t believe it”  He questioned if I could have Intracranial Hypertension on top of the rest.  I told him I had numerous lumbar punctures and that diagnosis came from Duke, he seemed to understand then that I really have been diagnosed with these things, they weren’t just speculation.  We went through a huge list of drugs I’ve tried and if they worked at all, and we discussed other treatments that haven’t worked (acupuncture, chiropractic, a ton of supplements….).  He finally said, “So, it sounds like nothing has worked” and I agreed.  (Oh, I was given a complete exam, testing all my reflexes, checking my optic nerve….he really was thorough)  He left the room for a moment and came back with a gammaCore.

gammacore
image courtesy of http://www.gammacore.com

Using the gammaCore – The gammaCore is a non-invasive vagus nerve stimulator.  It’s pretty darn cool actually.   Most of what I’m including next can be found on the gammaCore site, you can read more about it there if you’d like.  https://gammacore.com/

“gammaCore (nVNS) sends gentle, patented stimulation through the skin to activate the vagus nerve, providing relief from migraine and cluster headache pain in a different way than drugs.

  • The vagus nerve is an important highway of communication between your brain and many parts of the body
  • The vagus nerve plays an important role in regulating pain”

He gave me a demo and it was interesting.  You take this little device and put a gel on the electrodes then place it on your neck, right where you’d check someone’s pulse, you increase the signal until you get the results you are looking for (a twitch of your mouth or side of your face) you keep it there for 2 minutes and it cuts off by itself.  They say there’s a beep, but I can’t hear it, I just notice that it stopped, I don’t know why you’d need a beep to tell you that it stops, you can feel it.  People like to give sounds for all kinds of things that really don’t need them, in my opinion anyway.  After it stops on one side, you repeat it on the other side, and that’s it.  That’s a treatment.  If pain persist after 20 minutes, do it again.  After 2 hours, if you still have pain, or if it returns, repeat a treatment.

I will be receiving my gammaCore in the mail in a few days.  The first month is free, I don’t know how much it will cost after that.  When it was first approved earlier this year Stuart called to see if insurance would cover it and they weren’t there yet.  If it helps, I sure hope that insurance will cover at least part of it.   You are supposed to use it at the first sign of migraine pain, unfortunately I am NEVER without a headache, so I need to use it at the first sign that it’s getting bad.  I still don’t feel that the doctor understood that I have a headache ALL THE TIME.   I actually plan on using it as often as I can to see if I can get some lasting relief, maybe I’ll actually have a day without a migraine!  I am cautiously optimistic.  If it doesn’t work, I haven’t lost anything.  If it does work, I will have to decide if I can afford it.

One HUGE thing I hate about the gammaCore is that it’s disposable.  Why can’t they make it so you can charge it or change the battery or something, having to replace this device every month is so wasteful and bad for the environment.  I’m having a very hard time coming to terms with that.  I can only think that they do it this way so that people will have to buy a new one each month, that’s just a rip-off.  What am I supposed to do with all these used devices?  If nothing else, they need a recycling program.  (Yes, I will be suggesting this to them)

migraine-treatment
image credit https://www.marijuanadoctors.com/conditions/chronic-migraine/

Medical Marijuana – I also had an appointment on Wednesday to get approved for my medical marijuana card.  Medical marijuana is legal in Arizona and severe migraine is on the list of conditions that can be treated with it, so I decided to apply.  I should get my card in a couple of weeks.

Full disclosure here, I have been using marijuana to help me for a couple of years now, but I had to rely on what I could get on the street, I don’t know the strains, or anything like that, so results have varied.  Sometimes when the pain hits I can vape a little and it is gone, other times it just makes me feel funny, and other times it does nothing.  I’m hoping that getting it from a dispensary where I will be assured of quality and will know what strains and hybrids I’m getting, I will be able to medicate more successfully; more pain relief with less high feeling would be optimal. After I started using a little every night before I go to bed (I made brownies) my vertigo has been reduced drastically.  When I can’t get it, I have more vertigo again.  This is not an approved condition in Arizona (Meniere’s is an approved condition in some states), but it should be.  I can’t be 100% sure that it’s the marijuana that has helped my vertigo, but it would be some strange coincidence if it isn’t.  It even helps stop an attack….if I start to have a vertigo attack I will vape just a little and it will often stop it, even if it doesn’t stop the vertigo, it stops the vomiting.  I cannot stress how important that is.  The only reason I will go to the ER with all of this (vertigo or migraine) is if I’m also dehydrated.  Throwing up for hours on end will cause dehydration, I know that the marijuana has stopped me from going to the ER numerous times.  I’m so very grateful I have found some relief through medicinals.

As I navigate this new world of treatment, I will post more about it and give you lots of updates.  To learn more about how medical marijuana can help with migraines there’s a great article here: https://www.marijuanadoctors.com/conditions/chronic-migraine/

Now, it has taken me many hours to write this post, so I will close for now.  Hopefully my head will calm down soon and I will be able to write more often.  I would like to thank Lorraine for being so kind and helping me keep up my weekly Mindfulness Monday posts.  They mean a lot to me and it was really hurting me when I couldn’t post.  Thank you Lorraine, you are the best, I love you my friend!!

Have any of you tried the gammaCore?  If not, would you?

How about medical marijuana, have you tried it?  Did it help?

I’d really like to know your experiences.

 

Better. Functional Medicine and a Visit from a Friend.

On April the 18th I saw a Functional Medicine practitioner.  It was interesting.

She asked me a lot of questions, a thorough medical history, a short exam….it was a long visit.  But tell me, why do providers send you the information to fill out before you get there if they aren’t going to look at it until you are sitting in the office.  I feel like that’s a waste of time.  Me just sitting there while they read the information they’ve had for days.  Of course, I don’t feel they should do a lot of work when I’m not there, they don’t get paid extra, but being prepared would be nicet.

We talked quite a while.  She thinks I have an autoimmune disease, just like other doctors do, they think they just don’t have a test for it.  I don’t really see what difference it makes to know if I have an autoimmune disease or not.  There isn’t a one stop treatment for those diseases.  Mostly I see doctors giving those with autoimmune steroids.  Something I can’t take.

She wants me to get some blood tests done.  One for allergies, one for genetics, and one for….oh golly, I don’t remember what the other one was for.  My insurance doesn’t pay for any of this.  It’s expensive.  I haven’t gotten them done yet.  I was waiting on my insurance to see if they pay for anything, and now I’m waiting on my ride.  It’s a little difficult when you depend on someone else to drive you places, and that person works full time.  Stuart doesn’t mind taking me, but his time is limited.  We’ll get there.

magtein
source here

We talked about my migraines, she is hoping to find a trigger with the tests.  She suggested Magnesium Threonate (see the image above, I got mine from Amazon)and turmeric for the pain.  I started them within a couple of days and boy has it made a difference.  I’ve had days without migraines.  That’s HUGE!  I have that base line headache all the time, it’s been there most of my life, but the migraine on top of that has left me for a few days at a time.  I’m shocked at how much this has helped me.  Shocked!  Why hadn’t my migraine specialists suggested this in the past.  It really bothers me that I may have been helped years ago, if only someone would have suggested the right form of magnesium.  Heck, I never had a doctor suggest magnesium at all.  I started taking it because I read about it.  But I didn’t know there were different kinds and I couldn’t tolerate the kind I was taking.  I’m just so grateful for the relief.

I’ll go back to the functional medicine practitioner after I get the blood tests done.

me and kym

This week a very good friend of mine came for a visit.  It was so nice to see her.  She lives on the opposite side of the country from me, our visits are rare, and precious.  It was so nice to have a real friend come and spend time with us.

Kym and I went shopping.  I went out without Stuart for the first time in over 5 years.  It was liberating, but it was also a little scary.  However, Kym is one of the most level headed people I know and I knew she would not freak out if something happened.  She did something so right.  At one point I felt I needed to go home and I said so, she just said, “Okay, let’s go.”  She didn’t freak out and ask me countless times if I was okay.  She trusted me to tell her if things were getting  bad.  I admit though that I may have pushed it further but I was a little scared and tired.  It was a very good shopping trip.  No I didn’t go crazy with the spending, but I did find a couple of cute things that fit.  (I’ve lost a lot of weight recently, so I need clothes that actually fit me now.  Kym is a good person to shop with.

Vertigo has been kind to me recently.  I’ve had very little spinning, and when I do it is just a slight spin, nothing to worry about.  I did fall last week, and hurt my back a little, but really it’s nothing to be concerned about.  If things go as well as they have been I won’t have anything to write about.  LOL

Feeling Stuck

feeling-stuck
image source

I’ve been trying to write for a long time, but the words just haven’t come.  There are a couple of topics I want to write about, but they are sensitive, and they may offend some people who read my blog.  It’s a true dilemma.  I want to be true to myself and my readers, but I don’t want to hurt anyone.  So I feel stuck.

My brain is also just not working like it used to, I’m thinking that having a moderate to severe headache for almost 2 years has something to do with that.  They’ve just been getting worse.  I had another visit to the migraine doctor and she changed up the Diamox; she had to, it was driving me crazy with all the side effects and I wasn’t going to take it anymore.  She put me on Methazolamide.  It’s in the same family as Diamox but it is supposed to be more easily tolerated.  So far I am tolerating it, but it is doing nothing for my headaches.  I feel like she doesn’t take me seriously since most of my migraines are moderate in intensity.  A moderate headache  (between a 4 and 6 on the 0 – 10 scale) every day can be pretty debilitating.  At least I do have a few hours here and there where my headache is mild, but it’s still there, all the time.  My brain is mush.

I started to order supplements that are supposed to help with migraines, but I’m seeing the functional medicine doctor next week, I’m sure they will suggest supplements.  So, it will wait until the 18th.  I’m excited about going to the Functional Medicine doctor.  I’ll write all about it after my visit.  I was supposed to go a while back but we thought we might be moving and didn’t want to get started with another doctor.  But it looks like we’ll be here for a while, so let’s get started.

I was reading on the American Migraine Foundation site and the University of Maryland site about supplements that help with migraines. (be sure to check out those sites for information on supplements for migraines)  I’ve already tried looking for triggers in foods and everything else I can think of.  The only things that really trigger a headache for me is the weather, and strong smells.  Sometimes bright lights can do it.  So I’m searching for alternative treatments.  I’ve tried acupuncture and chiropractic, they didn’t work for me.  I know that magnesium can help with migraines but I found it caused diarrhea.  My migraine doctor suggested a different type of magnesium that is easier to absorb, (magnesium glycinate or gluconate).  Who knew there were so many different types of magnesium, I counted 7 yesterday when I was researching it.  How is one supposed to know what you need?

I decided to wait on starting the new magnesium until I found out if this medicine she gave me worked.  (I already take magnesium, but it’s the kind that upsets your tummy so I don’t think I’m taking a therapeutic dose.)  She still says to give this new medication a month at the highest dose.  I hate to say it, but I’m ready to look for something else.  I just don’t think the medications is going to help, so far my headaches have been more severe.  I’ve been on the medication for about a month now, I’ve been on the highest dose for a week now.  It’s a very hard medicine for me to keep up with .  I have to take it 3 times a day.  It’s the only med that I need to take in the middle of the day and I can’t remember it.  (I haven’t missed a dose, I just don’t feel that I’ve timed it out well) I installed a timer on my phone, hopefully that will help, as long as my phone is close enough to hear.  Great thing about this medication, it has greatly reduced my appetite.  I’m losing weight again, finally, after so much trying.  I’m very excited about this.  Now if I can keep it off when I go off the medication.

The thought of adding more supplements or medications to my regime is overwhelming.  I take so many pills, surely I don’t need all of them.  But I’m not one to just go off of medications.  I will go over all of them with the Functional Medicine doctor and we will see what he has to say.

“Functional Medicine is the deepest and most powerful approach to prevention and reversal of disease that I have encountered. It systematically discovers and addresses the root causes of disease and uses sophisticated treatments that lead to dramatically improved outcomes”  ~ Robert Sheeler MD, Editor Emeritus, Mayo Clinic Heath Letter

If you are curious about where I’m going, then please check it out.  Optimal Health Medicine Center

Since I’m giving an update on me I may as well tell you about my vertigo.  I’ve been having a lot of short spurts of vertigo.  It may be migraine related instead of Meniere’s, but it is really hard to tell at this stage.  I’ve fallen twice in the past 2 weeks.  Luckily I remember to just crumple myself on the floor instead of falling hard.  Both times I went down on my artificial hip.  Luckily, I didn’t hurt myself at all.  Think I need to use my walker at home more often.

So, I’ve been rambling.  At least I’m writing, right?  Today I just had to get out what has been going on recently.  Perhaps soon I’ll write about the other things on my mind.  I really want to keep my blog open and honest and not writing about these things that are going on in my life, feels dishonest.  Perhaps I’ll write about easier things first.  maybe.

Thank you all for following me.  I’m glad you like Mindfulness Monday.  I’m going to try to get out more posts, I promise.

What would you do?  If you thought a topic might cause some upheaval, would you still write about it?  It isn’t anything that everyone in my family doesn’t know about, they just don’t believe it all.  Then the other topic is about medical marijuana….since it isn’t legal in my state, I’m not sure I should write about it.