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

 

Thoughts on Migraine Hypersensitivity

Thoughts on migraine hypersensitivity

I found a post on Hearing Health and Technology Matters that I felt would be of interest to many of you.

Thoughts on Migraine Hypersensitivity By On July 18, 2016

“As the director of a balance and vestibular clinic, I see many patients with complaints of dizziness, disorientation, and motion sensitivity related to migraine. We work closely with our neurology colleagues in managing these patients. The International Headache Society has an official classification of “vestibular migraine.”

to continue reading this article please follow this link: http://hearinghealthmatters.org/dizzinessdepot/2016/thoughts-migraine-hypersensitivity/

Why can’t every day be like today?

Happy colored 10 10

drawing by me.

Today I woke up and said, “I feel great, let’s run around the block!”

Today was my 3rd day being on steroids.  I couldn’t sleep much last night, but I don’t feel it today.  I feel normal.  I feel like a normal person.  The migraines are gone.  The vertigo is gone.  The pain in my neck is much less.  Even the pain in my knee is gone.  Amazing!

I did all of my Vestibular Rehabilitation Therapy exercises without a problem.  I haven’t been able to do them at all for over a week.  Today I can walk without my walker.

I made myself lunch.

I danced in my living room.

I took a long relaxing bath.

I’m tired now or I’d make dinner!!

Why can’t I feel like this every day?  Or more days than not?  Or even some days when I’m not on steroids?

Today has been a very good day.

what a relief.

 

Update 5.10.2016

bird on handicap sign.jpg

It’s been a while since I’ve written a simple update about me.  Other than the migraine scenario.

What’s going on right this second?  My head hurts!  Yes I’m still fighting migraines.  I’m also having vertigo again, every day for the past week.  Yesterday I had it all day long!  It would go absolutely crazy, then it would slow to just barely moving, then it would go crazy again.  This went on for 12 hours.  I’m starting a regimen of steroids.  I don’t like being on steroids because they think that may be what caused the Avascular Necrosis in my hip, but I’m desperate.  My headache speicalist and my ear doctor both agree that steroids is the best thing to stop this cycle.  So here we go again.

I finished my Vestibular Rehabilitation Therapy.  It was a great experience.  I hope it did a lot of good.  I say hope because I wasn’t having much vertigo when I was going through therapy.  I was amazed at how well I progressed through the exercises.  On the last day, I had a vertigo attack start right there in the exercise room.  All I could do was hold on to Stuart and my therapist and squeak out, “I want to go home.”  A wonderful way to close out an otherwise great experience.  Since that last appointment I haven’t been able to do any of the exercises without falling.  I’m sad and pissed.

I’ve decided not to do the gentimicin injections.  There are so many risk.  When I’m at my worst I will think I don’t care about the risk, I’m willing to try anything, but I just went through a month of very little vertigo.  If I have the gentimicin injections I may never have good days.  I might not be able to learn how to balance without my ears.  And it does nothing to stop the vertigo caused by migraines.  What if most of my vertigo is migraine related?  I would still have vertigo and have to fight having no balance system in my ears.

My new ear doctor is thinking about trying steroid injections in my ears to see if it helps. (one ear at a time) But we will wait until I’m really bad again.  (If things keep up like this past week, we’ll be talking about this fairly soon.)  Steroid injections don’t carry the risk that gentimicin does.  It wears off, so if it works it often has to be repeated every 3 months. Since they think my Menerie’s is autoimmune, this is a good diagnostic tool, and if it makes me feel better, great.  Therefore, this is a good thing to try before deciding on gentimicin.  My new doctor is not a fan of gentimicin, but did not say he wouldn’t rule it out as a very last resort.

I’m sad right now.  Things aren’t going well.  Too many times I feel I’m saying, “I’m having a bad day.”  There have been days I’ve been so angry I felt like I didn’t know myself.  For the first time in a long time, I feel handicapped.  I hope all of this is part of my health not doing well, added stress and maybe menopause.  Not my bipolar medication taking a nose dive.  We’ll have to wait and see.

I have a couple of questions for those of you who have seen a naturopath or holistic doctor; Did seeing one help you?  How did you chose which one to go to?  I’ve been thinking about seeing one to try to get my over all health better, but I have no idea how to figure out who to pick.

As always thank you for supporting and caring about me.

 

Migraine Madness

headache guide 1a

My migraines are never under a 6, the average is a 7.5.  10 means you go to the Emergency Room.  Unless I was dying I wouldn’t go to the ER for a migraine.  I do not think they could help, and I do not want to labeled a drug seeker.

This post is personal.  No links to studies to back up what I’m saying.  Nothing more than what is happening to me.

On March 22nd I had a migraine.  Every day since March 27th, except 1, I’ve had a migraine.  Yes, I’ve had a migraine for 43 days out of 44.

This is not a medication rebound headache.  I have not taken medication for more than 15 days in a given month.

Can you imagine the days I haven’t used medication?

When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds.  I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.

I’ve gone through a DHE protocol of 3 shots for 3 days.  During this time was the day I didn’t have a migraine.  I still had a headache, but it wasn’t a migraine.

Why is this happening to me.  Well I have a guess, but I don’t really know.

After I had my seizures my Neurologist told me that Topamax can cause seizures in some people.  This medication is used to prevent migraines, but it is also used for seizures.  So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy.  Our mail order pharmacy didn’t fill my prescription on time.  They had a problem with the prescription and didn’t tell anyone.  Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.

So I ramped down and got off the Topamax and the seizures stopped.  I was off of the Topamax for less than a month when these migraines started.  I normally have about 15 migraines a month, some months a little more.  Very few months have I had less than 15.  I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did.  Right now I’m so ready to go back on this drug.  If I have a seizure I’ll stop it.  (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.)  Unfortunately, I kinda doubt my doctor will be willing to take this risk.  Maybe there will be something better.

Today my neurologist called in another medication for me.  I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days.  (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)

If this new medicine regimen doesn’t work I don’t know what the doctor will do.   I’m lucky that my neurologist specializes in headaches.  She actually runs a Headache Clinic.  I’m confident we will be able to get these migraines under control.  She won’t give up.

During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought.  I do question if this vertigo was Migraine Associated Vertigo (MAV) .  I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not).  Rotational vertigo is by far the worse.  I had a bought of that yesterday, but it wasn’t too bad.  The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever.  Yesterday could have been MAV, I just don’t know.  It was a very bad day.  I woke with a Migraine at 9.5 on a 0-10 scale.  This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo.  I’m leaning toward Meniere’s because my hearing was way off all day.

Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo.  I’m not sure why the rotational vertigo has calmed down, but I’ll take it.

I haven’t been around so much this past week, because the pain is getting to me.  I’m falling into Migraine Madness.

So, all my ramblings lead to one thing.  My head HURTS.