Oh Poop! Side effects are they worth it?

image from clipartfest.com

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?

 

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.

Christmas My Way

christmas-treeWhen I was 30 Christmases as I had known them changed forever.  That was the year my mother died.  Everything changed that year.  When the matriarch of the family dies the traditions die with her.  We tried to keep things alive, we had Christmas at my sister’s house as she had the only grandchild, things weren’t the same, but they were still nice.

Then there was a falling out between me and my niece.  Well not a falling out really, she got mad at me and refuses to be in my presence.  There isn’t much I can do, not that I haven’t tried, I have.  I could speculate all day what has happened between the two of us, but at this point it doesn’t make much difference.  This has however, ruined many relationships for me in my family.  Family Christmases became a thing of the past.

After Stuart and I became a family we started having Christmas celebrations with friends, as Stuart’s family lives a long way away and they don’t do much for the holiday anyway, again they are without the matriarch.  We normally celebrated Christmas day alone, just us, but leading up to that time, we went to parties and had people over to our home to celebrate.  It was a joyous time.  Then I got sick, and things changed.  We no longer got invited to parties.  I no longer felt that I could throw a party.  Then we moved so there is no likelihood of rekindling that time.  Truthfully, we’ve all changed so much, I don’t think there could be any rekindling even if we do move back to our old city, or if I miraculously got better.  Let’s be honest, my old friends really are just that, old friends.  They aren’t a part of my current life.

The last few years I’ve tried to be okay with the holiday.  But truth be told, I’ve been very depressed.  Depression runs rampant during this time of year and I was not immune.  I tried hard not to feel bad that I wasn’t surrounded by people.  I’ve had the one person near me who means the most to me, why should I be depressed?  Because Christmas is a time for friends and family.  A time for gatherings.  It was the two of us, yet I felt lonely.  And I felt guilty that I didn’t feel that it was enough.  I was depressed and felt guilty for being depressed.

Over the past few years I haven’t cared about decorations, we had no tree.  Why hassle with it?  No one would see it.  No one would care.  We’d have a little celebration.  We’d try, but it all seemed like we were just going through the motions.  Christmas is for groups of people, not just the two of us, and we didn’t have a family.

christams-decor

a little decorations making the holiday our own

This year has changed.  No we still don’t have a family, and we aren’t celebrating with any friends.  (We still don’t have any locally)  I changed.  I realized that Christmas really isn’t about family and friends.  It’s all about how you feel inside.  It’s not about giving the biggest gift it’s about giving to those in need.  It’s not about being with a bunch of people it’s about caring for those you are with.  It’s about caring for mankind.

This year I decided to decorate.  I never go all out like some people, that just isn’t me, but we put up a tree, and did a little decorating in the house.  It has made all the difference in our home.  We are in the spirit.  I understood just how much when my loving husband was looking through Amazon and found the National CASA Association Wish List, they provide Toys for Foster Kids, and told me that if I hadn’t purchased his presents yet he wanted the money to go to buying these kids presents.  How special is that?  So we took most of the money we planned to spend on our Christmas presents and bought Toys for Foster Kids.  Realize I did say most, I decided we needed a little gift exchange between the two of us, just a little something.

charlie-brown-puzzle

this is the actual puzzle we put together

We also have other traditions we are going to make sure we revitalize.  We always watch, It’s a Wonderful Life on Christmas Eve.  This has been a long standing tradition.  This year we are bringing back putting together the Charlie Brown Christmas puzzle, and our LEGO Christmas Train.  The train will be put together this weekend.  The puzzle goes together on Christmas day.  I don’t have a lot of traditions.  We cook a few little things as the time goes on, and health permits.  We’ve made some cookies so far, we’ll make spiced nuts to give to our neighbors, we’ll make a special breakfast on Christmas day….  The point is we are making this Holiday season ours.   And if at any time I can’t do something because I don’t feel like it we can postpone until later, or just decide not to do it.  All is good during our holiday celebration.

How can you make the season less depressing and more your own?  Remember that it really isn’t about family and friends, it’s about love and giving.  Love everyone and give to those in need.  Honor traditions you want to, we watch It’s a Wonderful Life.  Make new traditions, like putting together a themed puzzle on Christmas day.  Put up decorations if you want.  If you aren’t able to put up everything you want to, then either ask for help, or try to pick out your favorite decorations and put those out.  We have a small tree, and not all my ornaments fit, so I sit my favorites around as decorations.  The point is to make the holiday your holiday now.  Don’t try to make it what it was when you were well, or what it was when you were growing up, or any dream holiday you have been trying to live up to.  Make this holiday something special, on your own terms.

Sometimes no matter how much we try to make the holiday a pleasant thing for us, it just doesn’t work, depression takes over.  For those who get depressed during this time of year, remember that you are not alone.  If you need to reach out, please do so, there are numbers at the end of this post if you are in need.  If you need a friend to talk to please feel free to contact me.

  • U.S. National Suicide Prevention Lifeline: 1-800-273-8255  If you are having thoughts of suicide, call this number immediately.
  • Kristin Brooks Hope Center Hopeline: 1-800-784-2433  This hotline can help you cope with a range of depressive feelings.
  • Veterans Crisis Line: 1-800-273-8255 (press 1)  Responders understand the unique experiences of veterans.
  • United Way Helpline: 1-800-233-4357  They can aid you in locating a therapist, healthcare or basic necessities such as housing and food by directing you to local services.

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/

Migraines kept me away…let’s talk about it

It’s very hard for me to start writing again after I have been away for so long.  Especially after I wrote 2 posts that I am very proud of right before I had to go away.  Why did I go away?  Because my symptoms have been worse than usual.  Specifically my migraines.

Me with Migraine and Minor Vertigo...by w holcombe

Me with Migraine and Minor Vertigo                    by w holcombe

I won’t go into a lot of detail about what happened to me specifically.  Let’s just say, my migraines have been off the charts.  Lights hurt, Sounds hurt, Smells hurt….yes – Smells Hurt!  I’ve spent many days in the dark, without my cochlear implants on, filled with medication to make it so I wouldn’t throw up  (it didn’t always work), and some days I had to wear a mask to help keep out any smells that were coming in (and we keep our house as scent free as possible).  I’ve also had a lot of Migraine Associated Vertigo (MAV), or Vestibular Migraine, during this time. (you can read more about MAV on the Vestibular Disorders Association Site…just click here.)   I have chronic migraines.  Having chronic migraines means you have at least 15 migraines a month for at least 3 months a year.  (normally, you have migraines more days than you don’t)

A lot of people think migraines are “just a headache”, they aren’t.  So I’d like to take a little time to talk about migraines.

Headache migraines are moderate to severely painful, get worse with physical activity, are throbbing and often worse on one side, cause a sensitivity to light, sound, smell and last 4-48 hours (or more) without treatment.  If you have any of these symptoms, please talk to your doctor.  You do not have to have all of these symptoms to be classified with migraines, you can have a few.  There are also different types of migraines.  You might want to learn a bit about the different types of migraines…there is a list..here…with definitions and all that kind of stuff.

All the information I am sharing below comes from The American Migraine Foundation you can find out much more information there.

  • Migraine is an inherited neurological disorder.
  • One in 4 households has a member with a migraine disorder.
  • Migraine is 3 times more common in women than men, and will affect 30% of women over a lifetime.
  • The World Health Organization places migraine as one of the 20 most disabling medical illnesses on the planet.  Chronic migraines are even more disabling.  Yet it is almost impossible to get disability due to migraines.  If you have another condition and you can add migraines to it, they might listen to you, but when I filed, they were hesitant to even mention my migraines, even though they are extremely disabling.
  • Those with migraine are more likely to have depression, anxiety, sleep disorders, other pain conditions, and fatigue.
  • There is no cure for migraine. Treatments are aimed at reducing headache frequency and stopping individual headaches when they occur.  And constantly trying to find the right medications with the fewest side effects to help with this goal.
  • Prophylactic treatments (to reduce headache frequency) may include avoidance of migraine triggers, medications, physical therapies and behavioral therapies.  This is great if you can figure out your triggers.  Also, if your trigger is weather related, how are you going to avoid that?  I can’t stop the weather from changing.
  • Abortive treatments (taken when a patient has a headache) include over-the-counter pain relievers and prescription medications.  This is great, but you can’t take too many of these because they will cause medication overuse headaches (rebound headaches).  See more information below.  I am constantly aware of this and often afraid to take medication even though I’m in severe pain because I don’t want to go through withdrawal symptoms.
  • Prophylactic medications reduce headache frequency by 1/2 in only about 40% of patients who take these medications.  And the 60% just suffer??
  • Medication side effects often limit the use of migraine medications.  Oh yes.  I know this very well.  Severe itching, causing severe stomach pain, heart palpitations, constipation, diarrhea, tingling in my extremities, a change in what things taste like (the last two I put up with until the medication stopped working), Rocesea, low blood pressure…..It’s kind of scary sometimes isn’t it?

I only just touched on the surface of migraines.  There are many different types of migraines.  I haven’t even talked about all the symptoms I have.

I would like to talk a little bit more about the treatments.

Many of us cannot get the amount of medication we need each month because our insurance will only cover a certain amount.  Insurance companies will often only allow only 9 pills of triptans per month, this is an abortive medication.  Sometimes I have to take 2 when I have a migraine.  That would only cover 4.5 migraines.  If it covered 9 migraines that wouldn’t be as bad, but if you need to take 2 for a migraine, you are in big trouble.  This medication works best if you take it as soon as you feel a migraine coming on.  Everyone I know always waits until they absolutely have to take it because they don’t want to waste those pills.  This is so sad.  Ideally we don’t have to take more than 9 abortive medications in a month, but that is in an ideal world.  Of course, taking to many will cause medication overuse headaches….discussed below.

It’s best if you have a preventative medication, this will reduce or eliminate most of your migraines, if it worksUnfortunately, we haven’t found a preventative medication that works for me.  I have had some work for a while, then they stop.  We are constantly trying new things.  Until then, I’m afraid to take my medication, until I know my migraine is to the point I can’t deal with it on my own.  And that is often too late for the drug to work properly.  It’s a Catch 22.

We also have to worry about Medication Overuse Headaches, formerly known as Rebound headaches. Defined by the Mayo Clinic Rebound headaches (medication-overuse headaches) are caused by regular, long-term use of medication to treat headaches, such as migraine. Pain relievers offer relief for occasional headaches. But if you take them more than a couple of days a week, they may trigger rebound headaches.

It appears that any medication taken for pain relief can cause rebound headaches, but only if you already have a headache disorder. Pain relievers taken regularly for another condition, such as arthritis, have not been shown to cause rebound headaches in people who never had a headache disorder.”

For extensive information on Rebound Headaches,  The Migraine Trust has a great article titled Medication Overuse, it if very informative.  If you have headaches of any kind, and find yourself reaching for medication more than 10 days a month, I encourage you to read this article.  This can also include the use of caffeine.

Another issues migrainers face is that we are often labeled drug seekers.  I can’t even take narcotics.  I have had a migraine that has been so bad I couldn’t see and was throwing up, but would not go to the ER, because I know how so many friends have been treated so poorly there.  They have put them aside and just tell them they aren’t going to give them any drugs.  I don’t want narcotics.  There are specific migraine medications that I want.  Luckily, my doctor has taught my husband how to give me those shots so I have them at home.  I’m in the minority, I’m a very lucky patient.  I am able to see a neurologist who specializes in headaches.  There are very few of these doctors.  Most people with migraines have to go to a neurologist who see people with many types of neurological conditions, my doctor is very specialized.  All she does is headaches.  It’s great.  She is working very hard to get my headaches under control.

There is a great infographic that gives wonderful information on Migraines here, and another on Chronic Migraines here.

That’s all I have to tell this time around.   I have a lot more I’d like to share….not about migraines, at least not right away *smiles*, I hope I can come back very soon.

If I don’t get back before tomorrow…oh who am I kidding, I’m not going to get back before tomorrow….

I wish you all a Happy Thanksgiving!  And I want you all to know how very Thankful I am for you.  You are pretty darn special to me.