Last week was my first time participating in the Ten Things of Thankful challenge, and it made me feel really good. This week my ten things were not as obvious; I think that makes it even more important to take note of them. I’ll be the first to admit, I did not have a good week. A lot of pain and stress has taken hold of my body, I’m holding on, but it’s getting difficult. It’s time to step back and figure out how I can make things a little less demanding. Every weekend is filled with so much to do, when it gets to be Monday I’m in full flare. That has to stop, but I really like my busy weekends. I haven’t been able to do any of these things in so long, it does my heart good to be able to do them now, but my body is not as happy with me, and I’m afraid if I don’t slow down my body is going to make me.
I’m so very thankful:
for my amazing friends who keep me going every day. Some I “talk” with almost every day, some I don’t keep in touch with as often. but I know they are there for me, and I am so very, very thankful for that. I can only hope they know I’m there for them too. I love my people.
that I didn’t get really hurt when I fell down the other day. Yep, I fell, again. Hey, it’s been a while, and I didn’t fall because I was dizzy or anything like that, I fell because I stepped on something slippery and my foot flew out from under me. Mostly, it just scared me.
that I was able to go back-to-school shopping with my niece. It’s so much fun getting to know my niece and nephew, I’m so grateful we can now spend so much time together.
that a local friend of mine texted me today saying that if there is every an emergency I can call on her. That really meant the world to me. She’s local, and I haven’t even seen her yet, I must rectify that.
that I have Air Conditioning. It has been dangerously hot here; I honestly don’t know how anyone could live here without A/C. There are so many homeless people here, I don’t know how they survive in this heat. I’m so grateful I have a safe home and don’t have to live on the streets, my heart goes out to those who do.
that I have been having fun learning to decorate cookies. I’ve only just begun to learn about it, but I’m having so much fun discovering this new art form. I attempted my first watercolor on a cookie this week, it turned out pretty cool, not perfect, but not too bad.
That my father-in-law is letting me use one of his cars, and it’s a really cool car too. I’m just beginning to drive again, after a few years, so it feels amazing to be able to get to go somewhere whenever I want. I’ve only gone on one errand so far, I’m very nervous driving here because I don’t know the area and I can’t hear the GPS. I need to get a GPS that I can see without taking my eyes off the road, that would make things much easier.
for cooler mornings. I’m trying to get up earlier so I can enjoy the weather before it gets too hot, some days I make it, other days, I don’t get out much.
that my surgery is soon. Just got a call this evening that my surgery date has been changed to the 7th. This is causing a bit of inconvenience with Stuart and work. as that was supposed to be a training day for him, I’m grateful he will still be able to take me.
that I was able to do write a post. With my wrist pain, migraines, and additional pain this week, I didn’t think I’d be able to get this done, I’m so grateful that I could do it.
What are you thankful for this week? I’d love for you to share with me just one thing you are grateful for this week!!
I’ll try and write more about my surgery soon, a little mini update before I have to disappear for a while.
Monsoons 2018, by W. Holcombe. all rights reserved
“You can’t calm the storm,
so stop trying.
What you can do is
calm yourself.
The storm will pass.”
~ Timber Hawkeye
“You will not be
the same after the
storms of life;
You will be stronger,
wiser and more alive
than ever before!”
~ Bryant McGill
“The great benefit of
practicing mindfulness…
is the presence of mind
within a storm
of emotions.”
~ Phillip Moffitt
*photo was taken in Tucson, AZ , off my front porch, during monsoon season 2018. It’s am amazing time, I wish I could get better pictures for you. The monsoons are full of beauty and power, but…another of it’s secret powers is to cause super duper migraines. Ahh. Please do not use this image without permission.
I know you can normally find Mindfulness Monday here each week, I tried, but I haven’t been able to write much and I thought I’d explain why. (it has taken me many days to write this post, so bare with me…mmmkay?)
You may recall that I had De Quervain’s tenosynovitisin my left wrist/thumb earlier this year (you can read about it here), but you may have missed that I now have it in my right wrist. The left wrist was treated with a cortisone shot and since then I’ve had no problem. I’ve had 2 cortisone injections in my right wrist and I’m still in pain. (you can see pictures from the first injection here) I had the second shot on my birthday (July 2nd) my wrist felt better the first day after the injection, but by the second day I was back to the original symptoms and by the 3rd day it was actually worse. When I went in for the second injection he gave me the option of having surgery or trying the injection again, he told me that if it didn’t work to just call and schedule the surgery I didn’t even need to come in again. So I chose to try the injection again, to say those injections are not pleasant is a huge understatement, but I was really hoping to avoid surgery. After a week, when it was evident that the shot didn’t work, we called to set up the surgery and were told that it was too soon after the injection, I have to wait 4-6 weeks. I was not a happy person. I have a lot of limitations because of this issues; I can’t write or draw, I have extreme difficulty brushing my hair, typing, cooking, picking things up with my right hand, swimming…I’ve wearing a brace that holds my wrist and thumb stable, if I don’t wear the brace, I can’t do much at all…unfortunately the brace has started to cause issues on it’s own,
so I have to stop wearing it. The good news is that the surgery is almost always successful, and it’s very minimally invasive, in fact they often do it with local anesthesia. (I will admit I’m a bit intimidated by that, I don’t want to see them cut on my arm…ewww, but I also hate going under general anesthesia, so we’ll see) I was having a hard time accepting that fact that they were making me wait for the surgery, honestly I was pretty pissed; then I remembered that the way to happiness is acceptance. I decided to look at the whole situation differently. It’s only a few weeks difference, they aren’t saying I have to be stuck like this forever. I stated taking extra supplements that are supposed to help with joint and inflammation issues, hopefully this will reduce the swelling and some pain. (if you’re interested I’m taking extra turmeric, collagen, glucosamine..I think that’s all) Even though I’ll still need surgery, if the swelling is down, it should help with recovery. Accepting this situation made life a bit happier.
On another note, I’m having increased migraines, often with migraine associated vertigo, and cluster headaches. When we first got here my head actually felt better, but that didn’t last long. Bright lights are a big trigger for me and it’s really bright here, more than that, now it’s monsoon season so the barometric pressure has been all over the place with crazy storms almost every day, my head is definitely feeling it.
I’m also having a lot more cluster headaches and I don’t have anything to help them. I saw a new headache specialist about 3 weeks ago, I wrote about it here. I felt optimistic after that visit, but I haven’t received the gammaCore that he prescribed, it was supposed to arrive in about 5 days. We called to find out the status and no one called back, so we called again, and still no call back. I know that the office was moving but that doesn’t excuse them from paying attention to their patients. **Update** They called late yesterday and it seems that the doctor didn’t have us fill out a form that he should have, so it delayed everything. The nurse who called said she’s fill it all out and we could sign it the next time we are there, so the gammaCore is now on it’s way! I should receive it by the end of the week! Thank goodness. (the gammaCore treats both cluster headaches and migraines! again, Thank Goodness!!
So that’s what’s been keeping me away….along with other stress, but that’s for a different day when I can actually type without being in intense pain. Hunting and pecking with my left hand is not fun. 🙂
“Accept – then act.
Whatever the present moment contains,
Accept it as if you had chosen it.
Always work with it,
Not against it….
This will miraculously transform your whole life.”
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.
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)
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?
When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day. With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick. Other days I can get it all together and don’t look sick at all. It’s those days that confuse people.
I’ve learned that it takes me longer to do things than it does the average human. There are many days that I can’t accomplish anything, but let’s not talk about those days. I want to talk to you about the days I am able to do a few things. The days I appear normal.
Yesterday I started to do the dishes. The dishwasher needed to be emptied, and there were dirties that needed to go in. For a normal person this would just take a few minutes. I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest. I came back after a bit and started on the bottom, I put away the silverware, and needed a rest. After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher. While loading it up I took 2 breaks. Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher. At this point all I could do was make myself a cup of tea. This was the end of my ability to do chores for the day. No one would think that doing the dishes took 3 hours out of my day. I must say that I’m okay with this. I’m grateful I can do the dishes at all. I only wish I could do them every day.
Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time. Boy was I wrong. I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much. I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy. Very dizzy. Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here. (the reason I am dirty a lot of the time 😉 Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours. Luckily I did have the DVR set for my show. I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it. But how many people do you know that can’t get a bath done in an hour?
I don’t look sick. Taken at a wedding, July 2017
Then there are days when I seem to be able to go non-stop. Recently I had a weekend like that. We went to a wedding a couple of weeks ago. On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm. The wedding didn’t actually get under way until about 4pm. Luckily, I was just sitting talking with people. After the wedding, we had the reception to attend. On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband. Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving (know that all I did was sit and talk with people). We went back to our hotel, changed and were off to dinner. We were finally back to our hotel around 9pm. I was going full out, all day long. Boy was I beyond tired. Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day. (I did find out that my lip reading skills have improved dramatically.) Of course, I couldn’t sleep due to painsomnia (insomnia due to pain). There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was. This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me. It took a week or more to recover fully. For a “normal” person they could have made the trip in one day. It’s about a 3 hour ride (I can’t drive). We could have gone down for the wedding and come back that night, if I were a “normal” person. Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home. I had a lot of support for this trip or I never would have been able to make it. My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently. The specialist I’ve been seeing for my back called in extra meds for me for the weekend. If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself. I will be forever grateful. While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon. She then came back to our hotel and ironed hubby’s shirt. Without this help, I don’t know if I could have made it.
To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay. We normally appreciate things much more than “normal” people. We care deeply. We can still live a full life, it’s just different than a “normal’s” life. and that’s more than okay.
Friday was a normal day. I didn’t have a lot to do (bored). I’d been sitting in my chair reading when I got up to let our dog out. I got about a two feet and I ran into this:
again…..and did this
happened…..again.
About 4, or was it 5, years ago, I tripped on my walker and broke my foot. At least that time I was using it. On Friday it was just sitting beside me. I haven’t needed it lately, but I keep it close, just in case. A little too close to my foot as it turns out.
It hurt, like it does when you stub your toe, I didn’t think it was broken. It just didn’t hurt enough. I had this discussion with another chronically ill friend and she said the same thing about when she broke her foot. It really speaks volumes as to how differently we feel pain.
Stuart talked me in to going to Urgent Care to get it checked out since I’d broken it before, and was told it would be easier to break again, I decided it’d probably be a good idea. (I hate to say it, but knowing we have met our out of pocket maximum for the year, made it an easier decision.) I hobbled in Urgent Care, got checked in and was seen right away. I had an x-ray and the attending physician said my x-ray showed irregularities. She couldn’t tell if what she was seeing was all from the last break or if it was a new break. She thought it was broken, but a radiologist needed to read it to be certain. I was sent home with The Boot, and the radiologist would call on Monday. They did, and it is broken.
This time it’s not as bad as it was the first time. I didn’t twist my ankle or anything like that. I’ll be in the boot for 4 weeks instead of 12. It’s hot and heavy, but it is taking good care of my broken foot, for that I love my boot.
On the other end, I started physical therapy (PT) for my back last week. What’s wrong with my back you ask? I’m not exactly sure. I did fall, so I might have wrenched it then. (that was over a month ago). I had severe akathisia (the need to keep moving) for over a month. This caused me to constantly tense my muscles. It’s possible, my back just never calmed down. I also have arthritis in my neck, this is causing a lot of pain recently. PT will hopefully help that as well.
So far, I feel like the PT has been aggravating my arthritis. I discussed this with my physical therapist yesterday and he did a few things differently. Hopefully, these changes will improve the pain and still help me get stronger. If not, I know I can talk with him about it and we will work to make it better, to make me better. I’m so impressed by this office. Appointments are supposed to an hour long. As most of us know, that normally means you are actually seen about 45 minutes, sometimes less. My normal amount of time at this office is 1 hour 15 mins. Yesterday I was there for an hour and a half. I hope I get the results I’m looking for, it won’t be for lack of trying.
I’m happy to say that my migraines are still much, much better. I’ve had a few, but nothing like I was. I haven’t had a lot of vertigo. This past week I’ve had a few times where I’ve had really fast spins that last for just a couple of seconds, or very slow movement that I can barely see (but it makes me very nauseous). Overall, I’m feeling healthier than I have in years. I don’t know how long this will last, so I’m trying hard to make the most of this time.
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.
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.
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
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
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.
On January 25th I wrote about A Visit to the Migraine Doctor, in it I mentioned that my doctor was putting me on a new drug. Diamox. I haven’t been tolerating this medication very well. I haven’t been posting as much as usual, because of some of the side effects.
After being put on this medication I started having extreme GI distress. I had acid reflux, nausea, and diarrhea. These became increasingly worse. The acid reflux and nausea made it impossible to get a good night’s sleep. The diarrhea was worse, there were times I didn’t make it to the bathroom. I had no warning. As I started a new diet about the time I was put on Diamox I thought the GI distress was caused by the diet. I was wrong. I ceased the diet and still the GI distress continued.
My cognitive dysfunction has been much worse than normal. This is the main reason I haven’t been writing. I just haven’t been able to think straight enough to process my thoughts.
There are times you have to decide if a medication’s benefits out weigh the side effects, as this medication did not reduce my headaches (if anything they have been worse) I’d say it’s not worth it. So I’m officially off this medication now. I don’t know how long it will take for me to get back in the grove of things here, but I’m happy things are getting back to my normal.
There are medications that cause minor side effects and I’ve decided to stay on them because they were helping more than the side effects were causing me trouble. For example, Topamax changed my taste of certain foods. This was minor when it helped my headaches. (Unfortunately it isn’t helping my headaches like it used to, so we are working hard to find a new one that does.)
Until we can find a new drug that helps my headaches I’m stuck. When I have a migraine, which is most of the time, I can’t think straight. When I was on Diamox my thinking was even more muddled. Now that I’m off it, I hope some of my cognitive function is returning. I always have a bit of cognition problems due to Migraines and Meniere’s. Speaking of cognitive disfunction, I am having a hard time writing this post. I keep reading it over and over and forget what I just read. I’ve been trying hard to keep up with other’s blogs but my memory is not working as it should, so I’m not absorbing the information a lot of the time. I’m confused. I can’t think straight, even more than normal. I stopped Diamox a couple of weeks ago, I’m feeling much better, but my brain is still catching up, I think.
You must decide for yourself if the side effects of a medication is worth the benefits. Of course, this drug was not worth it, as it didn’t have any benefits. However, even if it had been beneficial I feel the side effects would not have been worth it. Trade less migraines for extreme GI issues and brain fog? I can’t do it.
Are there medications you are having side effects from but you still feel it’s worth taking?
Have you stopped a drug because of side effects even if it helps?
You may recall from my last visit to the migraine doc (a neurologist who specializes in headaches) that she’s tried just about everything and suggested that I look into studies. Well, she hasn’t given up.
I saw her last week and it was a long visit. I am always impressed when I go there that she never seems to be in a hurry. I never feel like she is rushed to get to the next patient. It’s amazing really, this is a doctor who is backed up over 3 months for an appointment, you know she’s busy. During our visit, I was having slow vertigo, which made it difficult for me to follow everything she was saying. I’m still asking Stuart some things, unfortunately he doesn’t seem to have much of a memory. He must have been worried about me. I did understand most of the visit, there are just little things I remember her saying that I wish I remembered. Like she said that Melatonin was good for something other than sleep, but we can’t remember what…….well I just looked it up and it can help with a bunch of things, including migraines. Who knew? I don’t know if that’s what she said, but I’ll keep taking it. It helps fall asleep anyway.
She is concerned that some of my migraines may be caused because my CSF (Cerebrospinal Fluid) is too high again. I have fluctuating CSF, it tends to run high. The migraine medications that I’m on help keep it lowered. She felt that we need to put me on a drug that will increase this effect. So I was taken off Topamax and put on Diamox. I’ve been on Diamox before, my CSF pressure did not remain stable on it either, we’ll see what happens this time.
She did look in my eyes, it was difficult because I had a bit of nystagmus going on at the time so my eyes were jumping, but she saw that it was bulging a little bit back there, a sure sign that my pressure is up.
The weird things is, if I have high CSF I should have a worse headache when I lie down. Sometimes I have a bad headache when I wake up but often I don’t. When I have a bad headache, it doesn’t get better when I lie down. hmmmm. Makes me wonder. But then there’s the eye thing, she did say it was a slight bulge. Well I’m just not convinced and I don’t want this drug to make my pressure go too low. It’s a very strong diuretic. I’m peeing a lot, but my body will get used to it I’m sure. I’m a little more light headed, but that could just be me, but it could be the drug. I feel very confused, this one has bothered me a lot, but it says it will go away shortly. If it doesn’t I won’t be on this drug long. I do not like being so forgetful. I was angry at Stuart yesterday and couldn’t remember why!! I don’t get angry at him often, you’d think I’d remember why I was mad at him. I think this drug is making me grumpy, or maybe that’s just me. I also think it’s reducing my appetite, as least that would be a good thing.
To sum up, I’m on a new drug (or back on an old drug). I’m not sure about it. I’m keeping an open mind though. I’m keeping a journal of my headaches as always, I’m adding in other side effects I’m feeling and paying close attention to all. I go back to the migraine doc in 2 months.
I can only say: Chronic migraines and New Daily Persistent Headaches suck.
Picnic with Ants 