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.

A Day in my life…..

During my last post I told how I planned to do some journal posts during the month of January.  I planned on these being open and honest reviews of my days, then I realized I wasn’t totally honest while writing my last journal entry.  I talked about the good things, the things I accomplished that day, but I glossed over the fact that I had a vertigo attack.  I just slightly mentioned it, instead of saying how horrible it was.  How it stopped me dead in my tracks.  How I was stuck in a chair for over 2 hours not being able to focus on anything and being so upset that the day was ruined.  (as you know now I decided to risk things and go out anyway, very unlike what I normally do, normally I stick very close to home after having a vertigo attack, but I was determined)  During the attack I was scared.  It is a very tough thing to deal with.  After the attack, I’was exhausted and had to rest for a while before I could do anything else.  Everything I did I pushed through.  That doesn’t mean it wasn’t a good day, it did turn out to be a very good day.  I simply glossed over the rough parts when I was journaling about it.

Well, day before yesterday was a good day.  Yesterday I paid for it, but I couldn’t give in and just rest all day, I had my yearly physical I had to go to.  I ached all over and just wanted to stay in bed all day, but I had to go to the doctor and have her poke me a bit and talk about my blood work.  I hate going for my physical, often they find something else wrong, who wants to go find out something else is wrong?  This time I didn’t find out anything else is wrong.  Yay.  My cholesterol is still high.  The good cholesterol is in good shape, but the bad and total are not in good shape and my triglycerides are too high, as usual.  We discussed my diet.  First she told me that I’ve lost weight.  SIX pounds!  Woot!  Yes I’m being sarcastic.  She was trying to be supportive, but really, 6 pounds in a year, is not good. (She had no idea I’d been trying to lose around 40lbs the whole year.)  So we discussed how I could get my weight down and my cholesterol in better shape.  I have a friend who has been on the Ketogenic diet for a while, so I asked about that before she suggested anything and she said it was a good diet for what I need.  She said it is good for people who have to be more sedentary.  The Ketogenic diet is very low in carbs and high in fat.  This is very different than I am used to eating.  I don’t go crazy with carbs usually, so I don’t think that is going to be too big of an issue, however increasing the fat is going to be odd.  It’s just so counterintuitive to what I’ve always done.  As soon as I can wrap my head around this and all the sweets from the holidays are out of the house, I’ll start the diet.  wish me luck.

Today I’m still achey.  I’ve had a migraine all day.  I had an appointment with my therapist this morning.  That’s going well, I think.  Some days I wonder why I’m spending so much money to just sit in there and talk, am I really that hard up for friends?  By that I mean that on some days I feel like all we talk about is stuff you’d talk about with your girlfriend.  Like, I found out who cuts her hair….now my hair finally has a good cut!  But if I think about it, most everything we talk about comes around to something that could benefit me in the long run.  So it’s all good.

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On the way home today we stopped off to buy more yarn.  Yes, I’m really enjoying my Knifty Knitter, so much so I think I’m going to finish my first scarf in a week….or less.  I’m thrilled that when I’m all achey and feel cruddy I can still sit and “knit”.  I feel productive.  I’ve always wanted to make baby blankets for charity, now I might be able to do that.  I’m looking into it.

Right now everything is taking much longer than it should.  But that’s normal for me.  Right now I’m going on 2 hours for writing this post, and I know it will go longer.   I keep wording things wrong, can’t think of words, can’t spell, or I simply get stuck.  At this moment I hurt too much to think and I don’t want to try any more….it’s just too hard.

It’s very unfortunate that cannibus is illegal in most states.  I’ve used it to help me in the past, but it is illegal in my state.  I’ve tried cannibus infused coconut oil to help with the pain and sleep, it is amazing for that.  I’ve used it via a vape pen during a vertigo attack and it stopped me from throwing up and slowed the vertigo.  What I wouldn’t give for it to be legal.  I’m having a hard time recently with vertigo and pain, it just makes me think about this more and more.

I think that’s all for my journal entry today.  I didn’t mention that I had a vertigo attack yesterday and a small one today, but if I mentioned every one we would be talking about vertigo a lot.  However, I think I should mention it every time during these journal entries to bring attention to how often I really do have vertigo.

I hope everyone has a safe and happy New Years Eve celebration!!

Tomorrow in my mother’s  birthday.  It’s always a bittersweet day for me.  I celebrate the day of her birth, but I’m sad she is no longer with us to celebrate.  It’s always an emotional way to start the year.

 

#HAWMC Day 28 – 5 Challenges & 5 Victories

Today is Day 28 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

5 Challenges & 5 Small Victories.
Make a list of the 5 most difficult parts of your health focus.
Make another top 5 list for the little, good things (small victories) that keep you going.

5 Challenges5 most difficult parts of my health focus:

fear

  1. FEAR- My number one challenge is Fear.  I’m afraid of the vertigo.  Of course I’m afraid when I’m having it, but I’m constantly afraid I will have it even when I’m not.  I’m afraid of the pain, the migraine pain, the arthritis pain, all of the pain.  I’m afraid the pain will get worse and I won’t have any way to manage it.  I’m working through some stuff in my past and I’m afraid of what I’ll find out.  I’m afraid of more than I like to admit, but I’m working hard to be less afraid.
  2. Finding Doctors – I’ve had a difficult time finding doctors that treat Meniere’s Disease.  Even if they say they do, they often have little knowledge of the disease.  It’s also difficult to find a doctor who knows a lot about migraines.  It has been difficult to find good doctors to treat me.  In each field I’ve felt I’ve found a good doctor, only to be hit with the “I can’t do anything else” line soon.  It is a definite challenge to find a good doctor.
  3. Freedom taken away – Isolation, is a big challenge.  Since I can’t drive, I have to depend on my husband to get me out of the house, this is a difficult thing sometimes.  He works hard and when he is at home sometimes he has things to do here, or he just wants to relax, he doesn’t need to be taking me out all the time.  Plus I have to get over my fear of having vertigo in public before I can go out at all.   My freedom isn’t just taken away because I can’t go out, it’s also taken away at home.  Because of my illness doing certain things are not only difficult, they can be dangerous.  I can no longer cook because it’s dangerous.  I can’t take a bath or shower by myself, because it’s too dangerous.  It’s very hard for me to do any housework, sometimes because of the danger, sometimes because of the fatigue.
  4. Friends – It is a challenge to keep friends, and to make new friends.  Many of the friends I had before I became ill are not in my life as much now.  (various reasons, but let’s face it, I’m a different person.)  Making new friends is a huge challenge.  (I wrote a post about this, Making Friends?.
  5. Food – Food has been a challenge for a long time.  I have had GI (Gastrointestinal) issues for as long as I can remember.  Then I found out that I have Fructose Malabsorption, IBS, and a wheat allergy.  I have a specific diet I must follow so I won’t get sick.  This makes it hard for me to eat out, or to travel.  It’s hard to explain to people, “oh, I’m sorry I can’t eat that lovely meal you prepared”  It used to be hard to explain why I can’t eat wheat, now it’s really hard explaining why I can’t eat onions, apples, and all kinds of things.

5 small victories – list of 5 little, good things that keep you going.

wedding-love

  1. Successful marriage – This isn’t a small thing, this is a HUGE thing, but it’s what helps keep me going.  My husband and I both agree when we think about it we don’t feel that we work hard on our marriage, it’s just something that comes natural, but that isn’t exactly true.  We do work hard, it’s just something we want to do, so it doesn’t seem like work.  When I first started losing my independence it was very hard on our relationship.  I shut him out and he didn’t know how to talk to me.  We decided to see a therapist.  It was there that we learned to communicate again, and we both have a better understanding of how to deal with my illnesses.  If I could give one bit of advice to any couple going through one partner becoming ill, it would be to get a therapist. It might just make your marriage better.  I know mine is.
  2. Days I can deal with vertigo alone – this is a big victory for me.  When I start to have vertigo I panic because I never know how bad it will be.  See number 1 under challenges, and you will know, I’m afraid!  So going through a vertigo attack without help is a huge victory for me.  I’ve done it a few times, where I’ll have vertigo when hubby is at work and I don’t callv him home.  This doesn’t happen often, so this is a small victory, but it’s a big victory really, every time it happens.
  3. Making new friends – I’ve made many new friends on line.  I have a hard time meeting new people in person, but I’ve found that I can meet some wonderful people on line.  I’ve made some wonderful friends through my blog.  I have one friend that I met through my blog about 7 years ago now, our friendship has transcended the blogosphere.  We email, text, and send packages to each other.  We have called each other, but I can’t really talk on the phone.  One day I hope to meet her.  I think this is a pretty big victory, to go from losing friends to gaining such a deep friendship with someone I’ve never met in person.
  4. Getting out of the house – There are days I can fight through the fear and get out of the house with minimal distress.  When I’m having a good day we can go out and do normal things.  Those times are small victories, they get me through until the next time.  They remind me that I can do it.
  5. Diet – Eating my restrictive diet has made it so I can eat with minimal to no GI distress.  It may be challenging to eat this diet, but I think it’s a small victory, actually a big victory, to be able to eat without GI distress.

 

I wrote a similar post to this one here.

I’m participating in WEGO’s #HAWMC, if you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

#HAWMC Day 24 – Focus

Today is Day 24 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Choose 3 images that represent your health focus.
Share the images in a post and explain why you chose each of them.

I don’t really know what they mean by “health focus” so I’m going to  chose images that represent my illnesses or what I focus on in terms of my health.

vertigo-caught-in-motion

I took this photo during a vertigo attack.  I was starting to take a photo of something and suddenly a vertigo attack started and this was what I got.  To me this represents my vestibular illnesses.

headache-2

This manipulated photo of me represents the pain and aura of my migraines.  I use this with other manipulated photos to show my doctors my level of pain.

hope-for-dr-gray

I created this for one of my doctors because she gave me hope when I didn’t think I had any left.  Now I realize there is always hope, no matter what.  This graphic represents that hope.

I’m participating in WEGO’s #HAWMC, if you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

 

*all images on Picnic with Ants are created and owned by Wendy Holcombe unless otherwise noted.

#HAWMC Day16 Activist Advice

Today is Day 16 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Wisdom Wednesday:
What advice do you have for health activists just starting out?
Share your words of wisdom for all the health activist rookies out there!

I guess my biggest piece of advice would be to just get started.  Just jump in and start.  I’ve been blogging for years, yet I feel like I’m just getting started.  I always feel like I’m just getting started, perhaps because I do little more than blog.  Recently I started my facebook page, and I’ve started being active on Twitter.  I’ve searched out others who posts about Meneire’s Disease, migraines, bipolar, chronic illness and pain in general.  I’m learning so much!

I can’t do a lot of the things I’d like to do as a health activist.  I’d love to be able to be a voice in person, to speak, to go to conferences, to be more involved.  But alas, I can’t.  I may try more in the future, but I’ll admit at this point in time I’m too afraid to try much more than I’ve been doing.  It has been very rewarding though to get to know so many people who not only understand what it’s like to go thorough the same things I do, but are able to put a voice to it.

My recommendation for starting out to be a good activist.  Start slow.  Don’t bite off more than you can chew all at once, you will get burned out way too fast.  Focus on one thing at first then move on to the next.  If you blog, make sure to blog on a regular basis. No mater what form of social media you like, be sure to stick with it.  Post often. Make contacts.  Believe in what you are doing.  Care.   I guess that’s the biggest thing, that’s what will keep you going, you must care.

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

#HAWMC Day 14 – Last Week/This Week

Today is Day 14 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

keep-calm-it-s-only-monday-93

Case of the Mondays.
Write about something that gets you down, burns you out, or makes you sad.
Purge it in a blog post. Turn it around at the end and tell Tuesday why you’re ready for it.

I don’t want to get all caught up in the self pitting part of Blue Monday.  I had a pretty rough week last week, this week I’m determined to turn it around.  Let me tell you about it.

Last week I had severe migraines almost every day.  This week I plan to take medication as soon as the headaches start.  I will not worry so much about running out of meds, or rebound headaches.  I will work to stop this cycle of severe headaches before it gets too strong of a grip.  (hopefully)

Last week I was very off balance and was having mini attacks of vertigo.  Last week I was not prepared for this.  I’m too used to having my husband here to help me.  This week I will be prepared to help myself as much as possible.

Last week I couldn’t walk without holding on tight to my walker.  This week I will bring my good walker in the house from out of the car, I have a seat on it and a better way to carry things.

Last week I had a hard time getting myself food because of my balance, this week I will be prepared and will have food ready that I can just grab and go.  Food that I can balance on my walker.

Last week my anxiety was very high.  This week I will get back to meditating and taking breaks for deep breathing exercises.

Last week I beat myself up because I felt so needy and dependent.  This week I will practice self compassion.

Last week I cried a lot.  This week I will focus on the positive.

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

 

#HAWMC Day 11 – Friday Follow!

Today is Day 11 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Friday follow! Create a must follow list for your
community:
• Top 10 Tweeters
• Top 10 blogs
• Top 10 Facebook pages

follow-friday

image source click here

There are so many amazing people, it is hard for me to pick just a few to pass on to you, but I’ll give it a try.  If I don’t mention someone it doesn’t mean that I don’t think you are great!!  It just means I ran out of room.

Tweeters worth reading their tweets on Twitter.

  1. @HearingHealthM (Timely information and lively insights for everyone who cares about hearing loss)
  2. @HurtBlogger (#Rheum advocate, #ChronicLife Founder…great chronic illness advocate)
  3. @dizzysupport (a community to inform and support people who suffer from dizziness, imbalance, vertigo, & vestibular health problems…)
  4. @911well (Mindfulness Wellness – Start your day with something positive…)
  5. @HeadacheHeroine (Spoonie: All types of headaches, narcolepsy. food allergies, (oh my!)
  6. @myselfandhealth (REAL TALK about HAPPINESS & MENTAL HEALTH).
  7. @MySpinningHead (Meniere’s Sucks Raising awareness of Meniere’s Disease by ranting about how much it sucks)
  8. @MenieresTeam (Bringing hope, inspiration and information to Meniere’s patients.)
  9. @sharieberts(Hearing Health Advocate)
  10. @justagoodlife (Patient Empowerer +…)

Blogs I just can’t get enough of…

  1. Hearing Elmo (hearigelmo.com) “Living with Hearing Loss and Invisible Disability”
  2. ADD…and so much more. (addandsomuchmore.com) “You can’t let what you can’t do determmine what you CAN!”
  3. Bipolar Barbie-Q (bipolarbarbieq.wordpress.com) “I was just getting seasick from seeing too much”
  4. Polishing Dookie (polishingdookie.wordpress.com) “Making the best of the sh*t I’ve got.”
  5. Behind the White Coat (doctorly.wordpress.com/) “Beats a real human heart”
  6. The Manic Years (themanicyears.com) “The world through the eyes of a bipolar mind…”
  7. My Frilly Freudian Slip (myfrillyfreudianslip.wordpress.com) “CREATIVE : ) : BIPOLAR ESCAPADES : ][: “
  8. Life of MON (lifeofmon.wordpress.com) “I Life Hard”
  9. The Mesh Warrior (themeshwarrior.wordpress.com) “The pen is mightier than the scalpel”
  10. All Things Chronic (painkills2.wordpress.com)

Facebook Pages worth a Look and a Like

  1. Transform Your Chronic Life
  2. Chronic Illness Cat
  3. Mental Health and Invisible Illness Resources
  4. Patients Like Me
  5. VEDA Vestibular Disorders Association
  6. Meniere’s Resources
  7. Chronic Illness Bloggers
  8. Putting Our Heads Together
  9. Migraine and Chronic Pain Art
  10. Living with Invisible Illness

I hope you enjoy these links.  If you have a link you’d like to share please leave it in the comments.  I enjoy finding new sources of information.

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.