Chronic Sinus Migraine suffer for over 12 years. Botox last resort.

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dualdogs
New Member


Date Joined Nov 2012
Total Posts : 2
   Posted 11/9/2012 7:24 PM (GMT -6)   
In response to those who have tried Botox injections.
I have also tried Botox injections; I just had my second set on October 15th. I have been suffering chronic/daily migraines for over 12 years and have tried all the medications and injections with no relief. I had 5 sinus surgeries in a 6 year period of time and only started getting migraines after the 5th surgery. My CAT Scans and MRI come up clear every time. I suffer fatigue, confusion, memory problems, moodiness/irritability, auras, light sensitivity and lack of energy and have lost at least 2 jobs because of how the chronic pain affects me. I was unemployed for over 3 years and just started a new full-time job in August (I tried to find a part-time on) I am not sure how much more I can take of working full-time. I have become very unsociable and angry. I have been to Sinus Specialists, Neurologists and University of Penn for the sinus problems with no success. I have tried alternate therapies with no success. Unfortunately for me the Botox was my (latest) Neurologists last ditch effort.
After the first set of Botox injections I began seeing double and had to go to an eye specialist for the double vision, not yet realizing it was from the Botox. It took about 2 months before I got everything straightened out with my vision but I still was unusually tired with eye fatigue. I could no longer do my one main hobby in life "reading". My vision won't allow it for more than 20 minutes at a time. So we kinda get the vision thing straightened out and what happens, it's time for the second round of 35 Botox injections. I received those on Oct 15, almost immediately my vision went double again, I broke out in a horrible itchy rash and I still suffer from daily migraines from a level 5 up on an everyday 24/7 basis. I will not be going back for more injections they are causing more harm than good. Here it is almost 3 weeks after the injections I am still itching like crazy and my vision is off. It's a struggle to get through every minute of every day. I have fallen behind in life again - that is what life I had. I have only one joy in life and that is my dog Brie, and unfortunately she is getting up there in life and I don't know how much longer she has 1-2 years maybe??? She also suffers due to my migraines as I cannot walk her everyday anymore; I barely make it through work. Every day after work I come home and nap to try to get some kind of relief - but I never get that rested feeling. I have trouble sleeping and take medication which compounds my fatigue. I am a walking zombie.
I also suffer from lower back problems which also limits my movements. I am at wits end, I don’t know where to go. I am 44 and can only see chronic pain for the rest of my life. I’ve already used up all my sick time at work and will have to either take vacation days or unpaid days off when I am deeply suffering. I snap at people when I’m suffering, I try to hide, stay away from everyone including family. They suffer too. I have lost all belief in anything, no hope or dreams left in life.
I question how much longer I can keep up a full-time job, I was denied disability. It’s only me. I live with my elderly mother and that is the only reason I have a home to live in.
So I have been in and out of various specialists for the last 12 years with no obvious success. I’m ready to throw in the towel. Fortunately friends and family have not yet given up on me. I contacted John Hopkins University Hospital in Baltimore, MD today as recommended by a friend. I have to get back to them with my history and believe me it is a book! I really don’t have any expectations from going there.
I just don’t want to do this anymore but I will not end it, it is not in me to do so. Any suggestions/ideas would be helpful.

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 2256
   Posted 11/11/2012 5:10 AM (GMT -6)   
I am sorry for your pain but can I be little candid? You really need help but I can not help you with whatever you have written in the post. You don't mention your diagnosis. You don't mention the meds/supplements you have tried. You don't mention if you tried to find any triggers. You don't mention your lifestyle. You don't mention if you have seen any headache specialist.

I was at your place 4 years ago when I took a charge of my headache and my daily headaches are now 4X a month. Not that great when it strikes but it does help to 'live' life.
Diagnosed March 2007 with left sided UC at the age of 30.
Currently on,
Colazal 9 daily, Imuran, 200mg daily, Vit. B12, 1mg, Multivitamin, 1 tablet daily, Fish oil 2400mg daily, Vit D 2000 IU daily.

Verapamil 320mg for migraine, Migraine episode now at least 4X a month,
Nabumetone 750mg as an abortive, so far so good with GI side effects.

dualdogs
New Member


Date Joined Nov 2012
Total Posts : 2
   Posted 11/15/2012 12:25 PM (GMT -6)   
I have tried every migraine medication they gave me with no luck. This includes BUT/APAP/CAF, Imitrex (pill & shot), Maxalt (Rizatriptan), Prop Naps w/APAP, Zomig, Hydrocodone/APAP, Relpax
Inderall LA (Allergic) and that is only since I started tracking them.
My diagnosis is chronic migraines and chronic sinusitis. None of the medications they tried helped, even a prescription pain medication does not even help. I know my triggers, sensitivity to light, eye pain, nausea, confusion, and irritability. I have a somewhat sedentary lifestyle and that is mostly because of my chronic pain. I do all the yard work and house maintenance at home. I have trouble reading or watching tv, my main hobby is reading. I work and do a lot of walking at work and have recently lost 40 pds. And I do believe a Neurologist is a headache specialist, let me know otherwise. I feel like every time I go to a doctor's they try things at first and then I start hearing "I don't know what else to do for you". My neurologist finally suggested the Botox injections and they somewhat help but the side effects (double vision and eye pain and rashes make it not worth it), and it doesn't take the pain away but does dull it a bit so I can function at work (for the most part). I have just recently am trying magnesium but it's been about 3 weeks and I have not seen a difference. Remember we are talking about over a decade of dealing with this and going to specialist after specialist. Prescribing drug after drug with no relief. Unfortunately after each attempt at getting help with no results I stop for a while, give up the doctors have not given me any hope for even getting some kind of relief. Then a year or so later I try again cause I can't take it anymore. I was out of work for over 3 years because I lost my previous job from missing so much work due to the migraines.

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 2256
   Posted 11/17/2012 6:35 AM (GMT -6)   
Welcome to the club. I have just same kind of headache as you have. All the meds that you mentioned have been through my system with a BIG zero effect, just my wallet weighs a little less now..

You know your triggers, what are they? whatever you mentioned thereafter in that sentence, all are symptoms of aura, just an indication that migraine band is right next corner, get ready to face the music.

What kind of chronic pain do you have? Why it's there to begin with? Do you have any other health problem, if so, what is it? You admit of sedentary lifestyle. Have you had a word with physical therapist that can suggest you exercise and/or also help you with your pain? May be you should see a pain management specialist. DW is a physical therapist and she works with a pain management doc. If these pains are not taken care of as early as possible, the brain usually tries to avoid the signals, because the overfiring of the nerves is also taxing on brain. That leads to new neural connections, ending up with pain all over. She can not help everyone but sometimes it helps to get life going.

Every neurologist is NOT a headache specialist. They know general arena but that does not mean they are experts in headache. Check out local headache centers in your neighborhood and schedule a visit ASAP. 2 days ago, my big city headache center gave me an appointment in March 2013, so you can imagine the load on these centers.

I started Mg (citrate form, vitaminshoppe brand, if you are using Magnesium oxide, throw the bottle away, read the label) about a month ago, 200mg morning and evening with riboflavin 200mg morning and evening and 400mg of CoQ10 once a day. I also haven't seen any effect as on yet but I read that it takes about 3 months to see effect. If I don't see any effect in 3 months, I plan to add 200mg of Mg-citrate in the afternoon as well for another 3 months. And then, depending on results, I continue or discontinue. Talk to your doc about it because if you have other health issue, you don't want to complicate it.


Have you figured out why do you have sinusitis? Are you allergic to something? Do you have mold in your house? Do you have deviated septum in your nose? Have you tried Indian procedure called as neti? Have someone with you if you try Neti. The first time you give a try, you will get an extremely bad/weird/unconfortable feeling all around your sinuses. Learn it well before you give a try.

What your food is like? Do you eat red meat, processed food i.e. standard american diet, all the time? May be you would like to go more veggie way. Take a look at http://www.fatsickandnearlydead.com/ movie. The guy does extreme but as long as you eat loads of veggies, you are good. I am a vegetarian for last 6 years as a result of my health issues. I don't even eat Soy (and if you are a woman, you should not either).

There is tons of hope when it comes to your migraine. Maintain a diary, you will need it when you go the specialist. If you use smartphone, take a look at migraine notebook.

Let us know if there is anything more you need to know.
Diagnosed March 2007 with left sided UC at the age of 30.
Currently on,
Colazal 9 daily, Imuran, 200mg daily, Vit. B12, 1mg, Multivitamin, 1 tablet daily, Fish oil 2400mg daily, Vit D 2000 IU daily.

Verapamil 320mg for migraine, Migraine episode now at least 4X a month,
Nabumetone 750mg as an abortive, so far so good with GI side effects.

Jason V.
New Member


Date Joined Nov 2012
Total Posts : 10
   Posted 11/23/2012 2:23 PM (GMT -6)   
I agree with much of what has already been said. I would def say to look closely at the diet. Gluten sensitivity and/ or food allergies can also cause or contribute to much of what you are dealing with. I would highly recommend using the Paleo diet as it will eliminate most all possible allergens.

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 2256
   Posted 11/23/2012 7:11 PM (GMT -6)   
@Jason,

I, myself, considered Paleo diet but I wonder what you can really eat.. Honestly, its just very very difficult to do in our fast paced life.
Diagnosed March 2007 with left sided UC at the age of 30.
Currently on,
Colazal 9 daily, Imuran, 200mg daily, Vit. B12, 1mg, Multivitamin, 1 tablet daily, Fish oil 2400mg daily, Vit D 2000 IU daily.

Verapamil 320mg for migraine, Migraine episode now at least 4X a month,
Nabumetone 750mg as an abortive, so far so good with GI side effects.

Jason V.
New Member


Date Joined Nov 2012
Total Posts : 10
   Posted 11/27/2012 11:47 AM (GMT -6)   
@Deltaforce
 
Actually, I personally eat paleo and really enjoy it!  Yeah, it took a lil while to get used to it but I have found a ton of good recipes online so I actually really enjoy the diet now.  Of course, health-wise I am much better for it!

jana2015
New Member


Date Joined Sep 2015
Total Posts : 2
   Posted 9/21/2015 10:18 AM (GMT -6)   
Hi , I have some problems for 8 years , I didn't see to many doctors , just one ( the doctor that did surgery to my nose for deviated sinus ). After that surgery I started to fell more bad that before , the sinus pain was worst that before and I can not stay anymore in cold or windy ,or air condition , not even 30 min .! So , when I told my doctor that I feel so bad he told me that he can do nothing !!! Just stay warm , with humid air all the time , no smoke , good diet also .
I can not sleep very well , but I don't take pills yet , just sometimes when I can not sleep before 5 am, I take LAROZEPAM , it helps to calm me down and get sleep .
I don't have a job anymore , like you !
I am lucky because my husband work and we are ok with his job .
I recomand you WORK SOMETHING FROM HOME : like nanny ,or broker insurance . If you don't need to stay in cold or air condition , is better , you need to stay in a warm place , humid air all the time , use eucaliptus , boil water and put few drops eucaliptus , it helps !
I live in Canada , Toronto, where is 8 months winter , so I intend to go in Florida few months during the winter . Salt water helps also !
I have back pain also from 25 years and I didn't take tratament for long time , so I think is time for me to start take some antinflamatory pills for long time and see how it works !
I found this article and PLEASE READ , I think is very good !!!!!
Another cause can be a poor circulation , so need to improve this too. I take Gingo biloba and it helps but is not enough so I will ask the doctor pills for this , I think the blood circulation is the most important cause !!!!
Read this :
http://www.edgarcayce.org/are/holistic_health/data/prsinu3a.html
I want to talk more with you and maybe we can get toghter something !!!! Wish you the best !!!!
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