Toradol Withdrawl Leads to Massive Migraine

Over the past few weeks I have been slowly tapering off Topamax.  With Topamax you can’t just stop it, you have to very slowly tapper off of it.  Otherwise you will get sick.  You will have a massive migraine plus you are at risk of more serious side effects of withdrawing from it. 

Once in the past because of an issue with my mail order medication order I was forced to abruptly stop it and I became very sick, which is why I no longer use mail order for my meds.  But this time I tapered off of it slowly so I was hopeful I would be ok.  However yesterday it hit me and I am now in the midst of a massive migraine. 

It is very resistant to treatment.  I went to urgent care yesterday for a Toradol shot which did very little.  Then came home and started aggressively treating this migraine but it hasn’t reacted to any of the medications I have taken and I used the really good, heavy duty drugs stuff too. 

I guess I am going to have to ride this thing out, mostly on the couch with a blanket pulled over my head.  Thankfully I got some prescription medication for the nausea which has helped a lot with that.  Hopefully this will pass soon but for now it’s back to the couch.

Meditation

My doctor suggested I try meditation as a form of relaxation.  When most people think of meditating they think of sitting cross legged on the floor and letting their minds go blank.  Sitting for long periods of time completely zoned out.

However that doesn’t necessarily have to be how it is done.  There are different ways to meditate.  The first thing you need to do is find a quiet spot.  Then you need to get comfortable.  Whether it’s sitting up, lying down or lounging it doesn’t matter as long as you are comfortable and relaxed. 

Next you need to focus on something, it can be the sounds of the birds or water’ or you can play some smoothing music.  You can also focus on a scene in your head, imagine yourself someplace.  It doesn’t matter what it is just as long as what you are focusing on is calming.

Then sit (or lay down) in your spot, close your eyes and concentrate all of you thoughts on your point of focus.  Push out any other thoughts and don’t let your mind wander.  Take deep slow breathes relaxing your muscles as your exhale.

The point of meditation is to give you a period of time when you can let go off all of your stresses and not think about anything else but something relaxing and calming.  It’s an escape from reality for a few minutes.

It can take some practice to really get it down and learn to control your thoughts without letting your mind wander.  Some people swear by meditation as for me we will see.  At this point if there is any possibility it will help with my migraines I will give it a try.

Migraine Clinical Study

Every think about getting in on a clinical trial? 

There are several studies going on right now that are exploring new treatments and medications for migraine sufferers.  As well as studying why people get migraines in the first place.

If you are curious about what studies are going on or what you would qualify to participate in you can go to StudyKik and search for clinical trials going on in your area.

Clinical Trials Search

If you qualify for one of the studies you can receive free treatments, medications and compensation for time and travel.

Before joining any study make sure you know exactly what will be expected of you, what is involved in the study, what type of treatment you will be getting and what the risks are.

Dealing with Stress

Stress Management

Stress is a major migraine trigger for me as it is with many people.  Managing stress is no always easy.  Sometimes there are circumstances in your life that can't be changed.  So it comes down to how you deal with and manage your stress.

The number one thing is to take time for yourself.  Whether its taking a class, finding quiet time to read, start a garden, whatever it is you have to do somethings just for you. Its something you have to put thought and planning into otherwise it most likely won't happen.

Take a Class

For me, I am taking a photography class.  I've always enjoyed taking pictures and even bought myself a nice camera but never really learned to use it.  I am taking the class online which is convenient and allows flexibility.

Puzzles

I also have started working puzzles.  Working puzzles is like a workout for your brain so it not only is a way to relief stress but it can also help keep your brain healthy from diseases such as Alzheimer's and dementia.  I have a small folding table I keep in the corner of our family room and in the evenings I working on the puzzle.  Its a nice way to unwind at the end of the day.

Exercise

I am also working on my physical activity.  On my good days I try to get out and go walking.  


Stress management takes work but its an important part of my treatment plan so I know I need to keep up with it.

Long Night of Pain

It was a long night with little sleep.  This migraine is suborn and is not reacting well to my rescue medications.  This one is a burning migraine.  I don't know how else to describe it but to say it feels like the inside of my head is on fire.  When I feel it start to burn I know its going to be bad, these kind of migraines always are.

This morning I am exhausted.  The migraine has eased up but I know its only temporary and it will most likely fare back up in full again later on and I am so tired from lack of sleep and hungover from all the medication I took last night.  I have to get moving and get a few things done before I go down again but I am dragging and moving slow.

I have to plan ahead, do what I can when I can.  By the time dinner comes around I may be in bed with a blanket pulled up over my head so I have to start getting things ready this morning for dinner. This way its all ready to go it just has to be heated up.

There is so much to do but I am so tire but I know this migraine isn't done with me yet and as bad as last night was it might not have been the worst of it.

This is the life of a chronic migraine sufferer, this is my life.

Finding a Support System

Trying to find people who really understand what I go through with my migraines has been hard.  Not everybody understands just how debilitating they can be and how painful they are.  And when you have them day after day people in your life sometimes become irritated rather then being sympathetic.  While its understandable because living with a chronic migraine sufferer affects their lives too they forget the suffering we are going through.

This is why its important to connect with others who can relate to me and what I am going through.  I recently found an online support group. +supportgroups  -   https://migraine.supportgroups.com offers support groups for a number of conditions including migraines.  Its a good place to not only get support for what I am going through but also give support to others.

I am still looking for other support groups and resources to support me in this journey.  Anything to help and make life a little easier so that I am not just surviving but living.

What to Expect with Botox

After waiting for two years to get approved for Botox, I was very excited for my first treatment and had high hope.  I figured I would get a few shots in my head, it wouldn’t be too bad and I would see immediate results.

So you can imagine my shock when I arrived for my first appointment and the doctor told me I would be getting 33 shots in my face, scalp, neck and shoulders.  And it could take up to four weeks before I saw results and it could take a couple of treatments to before I knew what the full effect of the Botox would be.

The first time I got the shots it wasn’t pleasant.  Ok let’s be honest, it hurt.  But as the treatments went on the shots got easier to handle.  Fortunately my doctor is really good about distracting me.  He puts music on and talks to me throughout the procedure so I am not focusing on the discomfort. 

I always try to limit all rescue medications that cause my blood to thin at least three days prior to getting my shots otherwise I bleed like crazy.  It’s like filling a balloon full of blood and then sticking it 31 times with a needle.  I have squirters everywhere.  It’s not pretty. 

Face your Botox treatments with hope but be realistic.  For some people they see 80 – 90 percent improvement while for others its much less.  For me Botox has helped but I have a long way to go before I get to the point where my life doesn’t revolve around my migraines and I am in a better place.

Botox Overdose

Shortly after my last round of Botox injections I started to notice I was having a hard time swallowing.  When trying to eat food rather then it taking me one swallow to get the food down it would take me three.  I found myself trying constantly re-positioning my neck to try and make it easier to swallow.  While eating I would become so tired from how much work it would take to swallow my food I would give up on trying to eat.  I mostly stuck to soft foods that didn’t need much, if any, chewing. 

I also began to experience neck weakness.  After a short period of time I simply got tired of holding my head up.  I constantly found myself resting my head on my hand or leaning it on something. 

It took about four weeks before I saw the overdose issues to start easing up.   Needless-to-say it was a long, exhausting four weeks.  This is the first time this has happened and hopefully the last.  And now my doctor knows my tolerance limit, at least of what I can handle in my neck.

New Medications for Migraines

Currently there are four pharmaceutical companies working to develop medications that are specifically designed to treat migraines.  This way migraine sufferers won’t have to take something like heart medication to treat their migraines and then have to worry about the side effects of taking a medication for a condition you don’t have. 

The four companies working on the new drugs, Alder BioPharmaceuticals, Amgen, Eli Lilly and Teva, are all developing slightly different antibodies, administered at different times.  Meaning some are monthly injections, some are injections given every 3 months and others are in pill form. 

Most of these companies are in stage three of their clinical trials and so far they are getting very good results and the medications are showing little to no side effects.  The down side to the new medications is they are made from living cells which makes them very expensive to produce.  They are estimated to cost anywhere between $8000 and $20,000 a year which means insurance companies aren’t going to be jumping up to pay for them.  Which means they will want you to exhaust all other options as well as meet other qualifying factors before they will even consider covering any of the cost for these new medications.  Just like it is with Botox now. 

These new medications are expected to hit the market in 2019 (hopefully).  I am excited for the possibility the medications might bring and am happy there is hope but these meds are still 3 years out and when you’re in constant pain 3 years seems like an eternity.   

High Fructose Corn Syrup Diet

I am constantly on high alert trying to determine what things might trigger my migraines and have found that food items with high fructose corn syrup in them are a trigger for me.  I did some research into it and found out that it really is bad for you in general it made me feel better about having to go off of it. 

If I eat or drink something with high fructose corn syrup in it I would get a very strong, stubborn migraine that lasted for days.

Going on a high fructose corn syrup diet is not easy because so much of what we eat and drink has it.  I have to read every label and eating out takes research and planning.  But I am learning which foods I can have which ones I need to stay away from.  At first it was a little difficult trying to figure everything out but now I know which food are safe and when eating out which ones are high risk for high fructose corn syrup, if I don’t have an ingredient list. 

So far I have been really good about sticking to the diet and now its just become a way of life for me.  

Genetic Testing

Proove Biosciences

My doctor introduced me to a new kind of genetic testing.  It was done by a company called Proove Biosciences.  The test is done by swabbing inside your mouth just like a DNA test. 

What the test tells you is what medications will work for you and which one’s won’t.  This way you’re not wasting time taking medications that are going to get you any results. 

The test will tell how likely you are to become addicted to opioid, what your pain tolerance level is and what your risk factors are for things like heart problems and bleeding ulcers. 

It will tell you how well you will respond to opioids including morphine, hydrocodone and tramadol.  It also covers non-opioids such as ibuprofen, acetaminophen and duloxetine.  They will also test you for medications you are taking to make sure you are responding well to them.  There is other information covered in the test as well that can help you with your treatment plan and pain management.

My insurance covered the cost of the test so if you are interested in having this type of DNA testing done talk to your doctor and have them check to see if your insurance will cover it.  It does provide some very useful information and is worth getting done.

Eliminating My Topamax

I have decided to try going off the Topamax I have been taking.  Since I was taking just the Topamax for a while and was still at 30 migraine days a month, it obviously isn’t doing anything for me so I don’t see the point in continuing taking it.  Especially since it can cause osteoporosis, which already runs in my family and I have begun to show signs of myself now.  Which my doctor believes has been brought on by my the Topamax so why continue putting myself through this when I am not getting any migraine relief from it.

So I have begun to reduce my dosage and will do so until I am completely off of it.  By doing this too, I will find out if Topamax is affecting my migraines in any way.

My treatment Plan

I have been getting Botox injections for my migraines now for about a year and a half now and the shots do help.  Before the shots I was at 30 migraine days a month and with the shots I am at about 15.  So overall I would say I have seen a 40-50% improvement.  But there is still a long way to go.

Right now my treatment plan is 100 mg Topamax and Botox injections.  My doctor wanted me at 150 mg of Topamax but at that level I lost almost all of my sense of taste.  What didn’t taste like cardboard tasted like old, re-used, nasty cooking oil that had been sitting out on the counter for a month.  I would to take a bite of a delicious smelling donut but taste disgusting, nasty grease that made me gag. 

After going down to 100 mg of the Topamax I got a lot of my taste back but not all of it.  There are still some items I can’t eat.  Topamax can cause weight loss because of the eating issues so you need to watch your weight and make sure you’re not losing too much weight.  Topamax can also cause osteoporosis so I have to make sure I am taking plenty of calcium and get checked to monitor my bone density.  On my first scan it did show some bone loss so that’s a side effect that has to be carefully watch.

Unfortunately the neurologist I was seeing left the clinic so they sent me to a pain management doctor.  I really need to find a new neurologist though I do like my pain management doctor.

So that’s where I am at with my treatment plan.  I can’t say I am completely satisfied with it.  I wish I had better results and could get more relief from these migraines.  I will just have to continue my search for relief.