Tuesday, November 5, 2013

Migraine mission and botox injections

I have been suffering with migraines and chronic headaches most of my life but the passed six years it has been severe.  Shortly after the birth of my second child in Sept of 2007 I started having severe neck pain, shoulder pain, lower back pain, mood swings and depression, than the migraines became more frequent and some would last for 4-5 days.  Yes that long.  They were awful, I would get nausea, vomiting, sensitivity to light, sounds, and everything seemed to trigger them.  I went to several neurologists and doctors.  I was diagnosed with a lot of different things over the years from, myo facial syndrome, fibromyalgia, arthritis, depression, insomnia, doctors wanted to do a spinal tap to test for ms, chronic pain, chronic migraines and muscle spasms.

This started my horrible journey through medications.  I don't believe in taking prescription medication really and have always been one to try natural remedies first but after many tests, mri and ct scans I had to eventually try these medications to see if some helped, cause I was suffering deeply.  I tried acupuncture, massage therapy, electro therapy, traction, chiropractor, chinese medicine and even injections to the muscles.  Then started the awful medications.  I was first put on Ibuprofen 800 mgs, this did nothing, than tried different anti depressants that claimed to help with depression and migraines, I was on amitriptyline, lexapro, cymbalta, lyrica, effexor, and every one made me feel worse, either more depressed, or I had severe side effects, from brain zaps, mental fog, memory loss, weight gain, and more.  The doctor tried adding wellbutrin and abilify to the medications to increase my lose of energy and motivation that did nothing but give me added anxiety, which I already had for years.

Next up was Topamax, worse drug ever for me.  I tried it for the first time when I was going to the chiropractor for massages and adjustments about 4 years ago, I lost a ton of weight.  I started out still over weight from baby #2 weighing around 180 and got down to 115 pounds in a few months.  My hair was falling out and food tasted weird, even soda tasted flat.  I remember throwing out two two liters of Coke thinking I had a bad batch then got cans and they tasted the same, so I googled this and found out this was a side effect from the medication.  I ended up weaning off it and then started trying beta blockers, and other meds for migraines from anti convulsants that are off label prescribed to prevent migraines.  I took Buspirone, Clomipramine, Lamictal, Doxepin, Flunarizine, Immitrex and than pain meds like Tramadol, Taradol, Ultracet, and percocet.  Nothing helped or I had awful side effects from them all.  I got so discouraged that for awhile I just suffered but that made me feel more depressed cause I would spend 3-5 days a week unable to do much, than weight gain from the meds, hair loss and other side effects made me feel horrible.

Last year I joined the kick boxing gym to lose weight that I had gained back over the few years of trying meds after losing all the weight from the topamax, and lost 40 lbs but around the holidays last year my doctor told me maybe it was hormonal and that birth control could help.  I started in Dec and by Feb I had such bad migraines I was missing the gym a lot and had discovered the birth control made it worse so the hormonal issues were ruled out.  I decided I was going to finally try to get something done about this.  I went back to my neurologist several times over the summer and we tried immitrex again, tramadol and toradol shots with muscle relaxers and other injections.  Finally a couple months ago my doctor suggested I try Topamax one more time.  I started out on 25mgs, and than increased to 50 and so on.  The goal was to get me to 100 mgs in a month and than try to see how it went and ride out the side effects for a month after that.  I started to see side effects after two days, first the taste, than no appetite, skin got dry, hair started to fall out, but worse part was the mental stuff.  I got very irritable, I have a good temper pretty much only when someone really messes with me or my kids do I get angry but I was getting mad and snapping over the smallest things, I would cry over anything and everything, than I started noticing that my judgement was off, mental stuff started happening like forgetting, confusion, waking up and not knowing where I was or what I was suppose to do, driving and forgetting where I was going.  I even noticed that I would comment on posts on FB and IG that would start out simple and turn into long responses cause I was easily distracted and than would lose my train of thought.

It was awful, I was a member of a forum for other moms into photography in my area and some rude, and totally out of place lady commented to me about how did I find time to post these lengthy comments that made no sense!?  Sorry lady I when you have a migraine, two kids talking to you and the medication makes you forget stuff that can happen, not everyone is so perfect lol.  She even had the nerve to say to me that she could barely find time to shower between photography and being a mom, but I had several businesses, blog and posted long posts on my IG and FB.  I am sorry I can multi task and have always been someone who is very driven, when I set my mind to something I do it and I have two kids, shower daily and have time to do many things.  Maybe she needs to learn to be less rude and realize that not everyone is the same lol.  Sorry that got to me so bad especially cause it was a forum for moms to meet other moms who loved photography, I do believe now that there was more behind that attack on me cause I had issues with a not so sane person who I had to hire a lawyer and take to court, file a court order for protection against and later realized she was part of this forum, but because I have her blocked didn't even cross my mind, anyways getting off topic cause it did upset me at the time but I took the high road and just unjoined the group cause at my age and having two kids I don't need to deal with drama, bs and negative people who really have no reason to be rude or treat people so unfair.

Then my family started pointing out to me that I was not myself.  That I was starting things and not finishing them, I would talk and forget what I was saying mid sentence, I was over sensitive, letting small things like the stupid forum crap bother me, crying over stupid things or nothing, getting angry so easy, going on crazy shopping trips where I bought stuff I didn't need, like 8 loaves of french bread lol. It isn't funny really it is scary.  One day I was driving and stopped at a light after dropping my girls at school, when the light turned green I was confused, where was I?  Where was I going?  I couldn't remember, realized I was dressed to go somewhere but since I couldn't remember headed toward home, than I get a call and realized I had a dentist appointment and that was where I was heading.  I got scared and called my doctor right away, he told me to wean off right away.  I than googled the medication and was horrified to read the stories.  Than my doctor told me to google lawsuits against the makers of topamax and was even more horrified.  I could not believe I was taking this poison.  Worse part though was that it got rid of the migraines and headaches, than it had a added benefit of weigh loss, I had gained some weight since spring break when I had gotten down to 130 lbs from kick boxing and gone up to almost 170 lbs.  I was down to 156 in a couple weeks of topamax and I am sure I lost more before I weaned off but a lot of it came back when I weaned off.

I joined weight watchers and the gym so weight is coming off and happy to say I have lost 20 lbs in almost two months, with another 10-15 to go so that is good and I love the gym keeps me motivated, gives me energy and the weight watchers is great.  I have noticed not just the weight on the scale but my body has changed a lot.  I also sleep better.  Now back to the migraines, sorry still have the rambling and side effects from topamax, doctor said that will subside over the next couple months.  When I returned to the doctor I had no more options for medication so he suggested botox.  I had never heard of it really except for a guy who works with my husband who suffered from migraines also told him about it and how well it worked for him, but he also told him it was costly and had to be done every three months.  I have been one who knows a lot of people who use botox for wrinkles and never thought really about doing it myself cause I just turned 36 and for my age I don't think I have many wrinkles and didn't want to start something that I would have to maintain that is so costly.  I told my doctor I was open to try anything but could not afford 600-1200 every three months.  He told me that with my history the insurance should cover it so we started the process of getting it approved thru the insurance and set up my appointment with the doctor that specializes in Botox for migraines at my hospital I go to for all my appointments.

My first appointment was a day away and I had received no calls from the doctor so I assumed it was approved cause when I set up the appointment the lady told me they would call me if the insurance refused the claim for it, other wise I wouldn't get any call and would go to the appointment.  I googled about it to see what people said and was shocked the little info I could find, but also that most that I came across was positive.  This is rare cause when I have previously searched medications and treatments in the passed I would have to stop reading cause I would read so many bad stories.  Seemed no one ever had anything good to write lol.  The night before I got a call late and the office told me the insurance had denied my first claim.  I was super down, the day of the appointment, which they canceled and moved to a week later, I received a letter from the insurance saying it was denied cause I had not tried at least two to three treatments or medications with no results or bad adverse effects.  I was so mad!  I had tried so many treatments and medications that I called them instantly and started to argue with them.  My doctor than submitted a new claim and added more medications, went into more detail about the severity of my migraines and the awful side effects and experiences I had with medications.

This week was my new appointment date, today to be exact.  I was nervous and every phone call I was afraid it would be the lady calling me to cancel and tell me I was denied, sure enough yesterday morning at 9 am she called and told me the insurance denied my second request from the doctor and that the doctor who does the treatment was booked till after the holidays.  I was so depressed and upset.  I was looking forward to trying this method and had read so many things that sounded amazing and positive, I was thinking this could be the answer.  I hung up with her and called my insurance company, which had me on hold for almost an hour and a half, to tell me that they needed to have the doctor call them and then they would have a peer to peer conversation with him and make a final decision for the year and if it was denied I could not reapply till after the new year.  I than had to call the doctors office and be shuffled around from appointment desk, to the coordinator for the office, to the nurse.  I explained the situation and she told me the doctor was at lunch but that after lunch he had a full day of appointments, he is an amazing neurologist and he takes a lot of time with each patient so most days he is running behind, but that is why I love him cause he cares, he has tried so many things for me and spent so much time with me at every appointment.  She told me he probably would not have time to call till after 4 or 5 and that I should not expect them to approve it in time for me to keep my appointment this morning.  I was so upset and basically gave up, I did tell my husband that if the doctor actually got my message that I knew he would make a point of calling and getting it approved.  He knows the pain and struggle I have been thru my last visit I was in tears over the suffering and horrible experience with Topamax.  I believed in my heart he would come thru but also I was worried they wouldn't give him the message before the end of the day and than that the insurance would think I wanted it for cosmetic reasons and deny it.

I had nose surgery and my tonsils removed years ago, the insurance company refused to cover the nose surgery saying it was cosmetic, I had a deviated septum and couldn't breath out one side, yes after they did approve it and I had the procedure the doctor did fix my nose.  I had a hump and than broke it when I was younger so it was crooked, that is what caused the deviated septum and in the end I got the breathing fixed and a little tweeked nose job for $100 out of pocket for my copay.  I have learned that you will be surprised what with some hassle of going back and forth with the insurance you can get them to cover and try to take advantage of it, it is our right all the money that is spent to have insurance.  Anyways, I got a call yesterday at 3 as I was picking my kids up from school that the insurance approved the procedure and today was the day!  I was so happy=).  The amazing, caring doctor saw my message when he returned from lunch and took time out of his schedule to call and fight with the insurance to prove I needed to try this and he felt it was medically necessary.  Made my day.

I was so nervous last night and had no idea what to expect.  I had googled like I mentioned before but found only a few sites and forums that talked about botox for migraines.  Some were old and when it was in the study and trial stages, so I didn't pay mind much to those but a few were recent and most positive.  I read that you get anywhere from 30-45 shots in the face, head, neck and shoulders.  I was very scared cause I hate needles and to the face or head ouch.  I had cortizone injections in my neck and shoulders before and it hurt awful.  I am desperate for relief though and after reading stories where people were brought to tears of joy over the relief with no side effects I felt super excited too.  I also read that some ladies had experienced reduced lines and wrinkles on their forehead and between their eyes as a added benefit, again I do not have lines or wrinkles at my age, but I do have these two lines between my eyes when I squint that I hate, and this could reduce those.  Every woman out their would be lying if they told you that free botox that could reduce some fine lines wouldn't excite them.

My husband took off the morning from work, he had a meeting and decided to go with my cause he knows I hate needles and with my anxiety I would have been a wreck alone, also I wasn't sure if it would make me feel weird after so wanted someone to drive me.  The doctor told me when I got there that you can drive after the treatment though no problem.  They had the nurse ask me a series of questions about the type of migraines, frequency, length and symptoms that I would get with them.  I had a migraine going in today that I had since Friday.  It did let up a little on Sunday but I was pmsing Monday and stressed with the insurance issue so it was back and pretty bad.  I showed the doctor the areas that the stress and pain start before the migraines and than where it hurts when I have them.  I usually start out with shoulder and neck tension, that ends up starting the headache, the back of my neck at the base of my skull on each side will ache and then my temples, and forehead around my eyes hurt.  I get nausea but take anti nausea medication so I don't end up throwing up, sensitivity to light, sound and temperatures also.  I see small white dots and sometimes my vision gets blurry.

He made a lot of notes and than went to get the nurse, she came in with 5 vials and showed me the small needle that they use, it is similar to the needle they use for the newer flu vaccines that is thin and very short.  Than he went over with me the injection areas.  It would start with two injections between my eyebrows, than six across my forehead where the last set of lines are when I crinkled my forehead, then four below it, several on the sides of my head above my ears in the temple area, than four to five on each side of the back of my head at the base of the neck where I get the pain when it starts, then a bunch down my neck and some across the top of the shoulders and base of the neck in the shoulder area.  All together my first treatment I received 31 shots.  It is usually 30-45 shots depending on areas and they adjust as you go.  The treatment is to be done every 3 months cause the effects wear off in that time.  He told me that you won't see anything or feel any difference for 3-10 days.  Also he told me I would be sore and some people complain of flu like symptoms for several days.  He also told me if I didn't have a migraine or headache I would later today.

I laid back on the bed and he did the first shot, he said he wanted to do the two between the eyebrows first to see how I handled it and also he said that way if I didn't think I could handle it I would have the two that take away the wrinkles and fine lines when you squint or make a mad face.  He was very quick and the first two didn't hurt really at all.  It was a quick pinch than when he put the botox into the muscle it was some pressure.  The forehead hurt worse cause he said the skin is tighter and he couldn't squeeze the area or move the skin off the bone much, the worse ones were the side of my head in my hairline above the ear, it made a crunch sound when needle went it and was the most painful sensitive area but it was so quick and really wasn't too bad, not as bad as the migraines are.  He then went to the back of the head and down the neck, shoulder area.  It was over before I knew it and really was nothing like I expected.  I had people tell me and had read that you will bruise, have swelling, discomfort and need to use ice or compresses after.  He told me no ice unless it was swollen or looking bruised when I got home.

I was amazed at how quick it was over and how painless it was, I am afraid of needles and usually black out when having blood drawn or iv done, but this was pretty easy and not too bad at all, if I can do it as big of a chicken as I am you can too trust me.  I have 14 tattoos and some are large but to me that is different lol.  It hurts but it isn't a single needle going into my body.  Either way it was way different than I had imagined and he was so fast and moved right a long it was over before I knew it.  I had some slight bumps on my forehead but by the time I walked to the car they were gone.  All I see now is a few small red dots in some of the shot areas, but nothing noticeable really.  I am achy tonight but not in pain, I had a headache when I went but after the shots it seemed to let up, I think that was from the pain of the shots, it seemed to take the pain away from the migraine and to the areas where the shots were given.  I had some slight burning and tingling in the spots of the injections on the ride home and then felt tired.  I came home a sat upright for awhile cause I had read not to bend over or look down, the doctor told me that it was okay to do all that but I still wanted to be extra cautious.

Around one this afternoon, my appointment was at 9 am, I started to get a bad headache, as soon as I felt it coming I took a immitex and laid down, it went away.  It is now almost 10 pm and I am sore.  I took a long warm shower and have been taking it easy most of the day other than picking my kids up from school and practice.  My neck and shoulders are achy and my head hurts but I don't have a headache.  I took photos of my face and neck last night, then this am, then after the procedure and will take some in 3 days to see if anything changes.  Also tomorrow I will post how I am feeling.  I read some people get stiff neck, or feel like they can't move their neck the same, than the doctor said I could get flu like symptoms, so I will update.  I wanted to post this to help other people who are looking into, have been thru or are going to get this procedure done.  I know I like to google things before I try or buy something new to read reviews or just to find out what is done.  If you have any questions please feel free to comment below.  I am here to let you know anything I can or help inform you of the treatment I received.

If you suffer from migraines and have tried medications or other treatments, I do recommend you speak to your doctor or neurologist about this.  My doctor told me the only time I should have headaches is around my menstrual cycle and they should be easier to treat with motrin, advil or immitrex.  Again this was my first treatment and just had it done this am.  He said that most patients see and feel the best results after two to three treatments because they will tweek the areas of injection and how much every visit till they find the right one for each person.  I go to my neurologist in 6 weeks for a follow up to see how it is working and my next botox appointment is in 3 months.

Will post more tomorrow, I have a pretty slow day and only plan to edit some photos I took for my daughter's school that I need to hand in to the yearbook committee than I have a post planned on diet and exercise along with some of my measurements and weight loss from my journal.  I also plan to do a write up on General Hospital happenings and Real Housewives of Miami, and the return of Housewives of Beverly Hills fashion also.  I will try to squeeze in a update on the botox and than in 3-4 days I will post before and after photos also.

Hope everyone has a great week, and hope this works for me cause it is my last resort.  Thanks for reading and hope this helped inform you more on the treatment, please feel free to contact me if you have any questions.

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