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)

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.

 

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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.

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

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.

 

A visit to the Migraine Doctor

headache

ocular migraine, by w. holcombe

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.

My Chronic Migraines

headache-7

photo of and by w. holcombe

I have Chronic Migraines.  I’ve been told this before, it was said once again yesterday.  I’ve met a number of Neurologist who thought they could make it better.  I still have Chronic Migraines.

I’ve been to 2 Neurologists who are Headache Specialist.  There aren’t many of these doctors out there, I’m lucky that I have been able to see 2 of them.

The first specialist I was seeing was a Duke, I moved to Charlotte and started seeing a specialist here.  I never thought we’d get to the point where we are now.

I’ve tried so many medications.  I’ve tried Botox, and well just so many things.  There are some medications I can’t try because of reactions I’ve had to other medications.  My doctor is at the end of things to try.

I was taken off Topamax when I had the seizures because they thought that it may have caused them, now that we know it wasn’t the medication I can go back on it.  My migraines did get worse when I was off of it, but my headaches were a long way from being optimal when I was taking it.

Over the last 3 months I’ve had a migraine ever day except 8.  This does not include the headache I constantly have.  When I first started seeing the specialist here she thought we could get the daily headaches under control and then the migraines would get better, well neither of those things happened.

Now I’m going back on Topamax to at least get me back to where I was.  Having migraines about 15 days a months instead of about 30.

I saw my specialist yesterday and she said she is looking out for studies for me to participate in.  There is nothing else she can think of.

I’ve decided to go to a Functional Medicine group to see if they can help me. Unfortunately, they are not covered under my insurance so this can get quite costly.  I’m not sure how much I will be able to afford.

(Functional medicine is personalized medicine that deals with primary prevention and underlying causes instead of symptoms for chronic illness and disease.)

This is Invisible Illness Week.  I’m not sure I’ll get it together enough to really post much about it, but Migraines are an invisible illness.  I look perfectly fine yet I’m struggling every day.  I have Persistent Daily Headaches and Migraine headaches.  Every day my head hurts.

Remember, just because someone looks perfectly fine doesn’t mean they aren’t suffering silently.  We may look great and still be sick.

#ThisIsChronicIllness #InvisibleIllness