Give me a little hope... maybe??

By cathys

1 min read

I have suffered with chronic migraines since I was 17. Nearly 40 years. I've tried everything known to mankind to treat them .. to no avail. I just had my first round of Botox on January 18th. Please tell me this might give me some relief?? I have a migraine sometimes every 3 weeks, sometimes every 6 weeks. They can last anywhere from 3 days to 6 days. I take all of the prescribed "preventive" drugs my neurologist has me on. I go to his office immediately (the first day he's open, my migraine normally attacks on a weekend) and get a butt cheek full of Dilaudid, Toradal, and Phenergan. Then I'm driven home in my narcotic stupor to try to sleep for a few hours. Most times when I wake up I still have the migraine. I'm just praying that I will see a little relief from the Botox. Has anyone else tried it? Did you notice any differences in frequency? Thank you for listening. I'll pray for you all because I know how horrible these things called "migraines" are.

Cathy

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jean Member
I am not a candidate for Botox but here is an article about it. Use the search box for more articles. Hope it works for you. <a href='https://migraine.com/blog/10-tips-for-getting-the-most-from-botox' target='_blank'>https://migraine.com/blog/10-tips-for-getting-the-most-from-botox/</a>
Meaghan Coneys Moderator
Hi Cathy, Thank you for you sharing your story with us. We are happy you are a part of our community at <a href='https://migraine.com' target='_blank'>Migraine.com</a>. I am so sorry to hear that you have not found a successful treatment for your migraine attacks. I do hope that you have a positive experience with Botox and that it provides some respite. In addition to the article posted by Luna below, which is very informative, here are some other articles that discuss the effects of Botox - <a href='https://migraine.com/migraine-treatment/botox-for-migraine' target='_blank'>https://migraine.com/migraine-treatment/botox-for-migraine/</a>, <a href='https://migraine.com/blog/botox-chronic-migraine-experience' target='_blank'>https://migraine.com/blog/botox-chronic-migraine-experience/</a>, <a href='https://migraine.com/blog/botox-basics' target='_blank'>https://migraine.com/blog/botox-basics/</a>, <a href='https://migraine.com/blog/will-botox-work-new-study-may-provide-clue' target='_blank'>https://migraine.com/blog/will-botox-work-new-study-may-provide-clue/</a>. Not only may you find the articles helpful, but the community member comments on each article may provide some insight as well. Also, here is a link to all articles <a href='https://migraine.com' target='_blank'>Migraine.com</a> has posted associated with Botox - <a href='https://migraine.com/?s=botox&submit=go' target='_blank'>https://migraine.com/?s=botox&submit=Go</a>. Perhaps when time is available you could scroll through for more information. Again, thank you for sharing your story with us. We love hearing from you and would love to be kept in the loop about your progress with Botox. So please keep us posted! Sending loads of good energy your way. Warmly, Meaghan (Migraine.com Team)
gd0qet Member
Hi Cathy, I have not tried Botox yet. I often get my migraines on Friday and have them all weekend. They are called "let down migraines." It is starting to become a pattern. I have a very stressful job. I am working on some different preventatives with my Nuerologist but have found that visatril and soma together at night will cut the migraine if Amerge does not do it. The Amerge will keep it away for 12 hours so I can work. My abortives usually don't make it go away anymore. If they do not cut the migraine, I will have to stay home and take the same medication three times a day. It makes you sleepy, so I have to stay home. If that does not cut the migraine, then we add a steriod. I usually don't do the steriod often. I know at some point I will have to change jobs or quit. The stress is causing the migraines by Friday. I hope Botox works for you. It may be my next step.
cathys Member
Hi Deborah - thank you for writing. I wish I could figure out why I get these "let down" migraines. Mine aren't really a pattern - sometimes it's 6 weeks in between and sometimes its 2. There's no rhyme or reason. I'm just praying that the Botox helps me. I take Topamax and Amitriptyline at night. I've lost 30 lbs on the Topamax. Some people would be thrilled with that but, I'm not very big to begin with. Now my friend think I'm anorexic. 🙁 It's a vicious cycle but I'll try anything and everything to try to gain control of these nasty headaches. I don't even expect them to go away completely, just less frequent and dear God something to help them be less painful. I've missed so much work. Pain meds do nothing for me anymore. I'm immune to them at this point I think. What is Amerge? What do you take for preventives? I will say a prayer that you find some relief as well. Keep in touch, please. It's good to hear other people's stories and to know we aren't in this alone for sure. 😀
1. jns192 Moderator
 Hi Cathy, We are glad you are getting some feedback from the community- Amerge (naratriptan) is an acute treatment for migraines that is part of the triptan family. As far as botox, I tried it a couple of years ago. It definitely decreased the pain from migraine attacks but I didn't love the way it made me feel. Definitely give it a few months to see if it is right for you! It has worked wonders for many community members. Aside from medications, I have personally found that I feel better in general when I stick to a routine (wake up/ go to sleep same time every day, incorporate exercise into my daily routine, eat consistently and healthy etc.) I thought you might enjoy this article about migraine management confidence boosters! <a href='https://migraine.com/blog/migraine-management-confidence-boosters' target='_blank'>https://migraine.com/blog/migraine-management-confidence-boosters/</a> Best, Jillian (Migraine.com Team)
u8cdi0 Member
Dear, Dear Cathy, First, I must apologize; I'm certain this is going to ramble in many places and there will very likely be grammatical & punctual errors. My brain doesn't work very well anymore. Cathy, you have no idea how your post impacted me; you could have no way of knowing how much I needed to know that I'm not 'the only one'. I can't offer you any hope but I want you to know that you helped me instead. Your post showed me that I am not the only 'one'suffering. I was going to write to this Web site today because I'm lost & stagnant in my feeling of singularity and afraid of what it may mean. I feel hopeless & helpless. I feel that I'm sentenced to just living in the darkness of my home, being a burden to my family, waiting to die.I know that none of this honors or glorifies God and it certainly doesn't reflect very good faith; I don't want that to be my truth but it is and that makes me feel even worse and the cycle goes on and on, deeper and deeper, seemingly endless. I'm new to this site but so far I've been impressed by it.(this is going to take me all day to write but I'm gonna do it) I was going to write something today because I feel very alone and crazy even, and I don't have anyone to tell me if I am or not. I feel completely out of time, energy, resources, hope and drive. My little sister & all-time best friend would often help me with these thoughts & feelings because we could talk about anything and everything and she knew my health history insinde and out since we grew up together. She saw me suffer with the Migraines & medications, and side effects her whole life. She saw me suffer with a serious pre-cancerous illness that almost claimed my life. We were so very close and she 'grounded' me in so many ways. I don't have her anymore,she died unexpectedly last June of a terribly torturous illness in which virtually ALL of her medical 'professionals' literally failed her and in my opinion actually extended her pain, facilitated her suffering and caused her untimly death. Anyway, like you, Cathy, I have suffered with Migraines for many years, my entire life actually, and I am beyond hopeless. I have had migraine symptoms since infancy. I received my first formal diagnosis when I was 5 years old and treatment was started then as well. I recall, it was Christmas Eve and my Mother got the prescription medication filled and I was to start it that evening. We always went to my Grandparent's home for Christmas Eve and they came to our house on Christmas Day. So, sitting on my Grandma's screened in porch, my Mom taught me how to swallow pills. It was difficult at first but became a no-brainer in no time. I had to take pills because there was no treatment medication developed for children yet at that time. I have tried everything that every doctor prescribed in my life time to no avail. When I was 19, I almost bled to death due to a different illness, I'd lost so much blood over a period of time that I'd become deathly anemic. I ended up having a complete blood transfusion and afterward I slept for 2 weeks straight. (Side note: I was informed during this time that the blood I was given was not tested for HIV/AIDS or Hep C & I should be tested regularly, which I am, but sure enough, the Hep C became active in 2001. In 2007, I was told that I was one of the lucky few who's body was able to clear itself of the illness but that I am a carrier for life and it could recurr at any time. No HIV/AIDS yet.) The crazy thing was, that I did not have a single headache for exactly 1 year afterward, almost to the date. The first one I had put me back in the hospital for 3 days and back into the boxing ring of the life-time battle with the migraines. Until 2005, I had intermittent migraines; I could go up to 6 months without an attack. I wish it were still like that. In August 2008 we moved from New Mexico to KC & I had been 'battling' a migraine at a constant pain level 5/6 since May. Then on 11/29/08, the Saturday after Thanksgiving, that monster landed me an ambulance ride to the ER and a week's inpatient stay. I was discharged on new drugs and a follow up appointment in the Neuro clinic. I have had a constant migraine since then. It never stops. It never actually calms down. It never responds to any medications. My pain level never goes below 7. I used to occassionally have what I call a 'calm 7' because it didn't interfere with what I wanted to do as much, it's there & I can feel it but it's quiet and I have energy to do whatever I want. I also feel more emotionally well during the calm 7. However, not only was this rare but now, when I jump into doing things it shoots up quickly, sometimes violently and that's the end of it for me. I rarely have a calm 7 now; the lowest I get is a threatening 7; sometimes it's a moderate 7 but I have 1 or more of the 'signs'- super nausea, muscle pain in neck, significantly louder ear ringing, 'super' nose where I can smell everything, eye ball ache/pain, dropsy-I drop everything, mega yawning, super light sensitive vs absolute intolerance, confusion, memory trouble, foggy thinking, black-out floaters, bad mood, emotional, etc. I have bilateral Trigeminal Neuralgia of the ear & face. It started on the left side in the 2008 episode. It isn't my inner ear like an ear ache, but the top inner part of the outside ear would have a sharp pain in it that would change to a feeling of freezing fire,travel across my cheek, under my eye, down my nose to end at my upper lip. It feels like BenGay cream has been rubbed on my face; both intolerant levels of hot & cold at the same time. It's extremely uncomfortable at best. It was only on the left side but in 2009 it started to be on my right side, just not as intense or as frequent. The only thing that helps this so far is Diazepam but when the Migraine spikes the trigem does also and so far nothing helps it at that point. I have silver & flash floaters non-stop; literally all day,every day. I have outrageous ringing in my ears. It sucks. It's non-stop, multi-level, multi octive, never stops but gets so loud sometimes that I can't hear other things clearly. In 2008 we moved from New Mexico to KC & I had been 'battling' a migraine at pain level 5/6 since May non-stop. Then on 11/29/08, the Saturday after Thanksgiving, that monster landed me in an ambulance drive to the ER and a week's inpatient stay. I was discharged on new drugs. I have had a constant migraine since then. It never stops. It never actually calms down. It never responds to any medications. I have re-created the 0-10 pain scale for my use because my pain level never goes below 7. Occassionally I will have what I call a 'calm 7' because it doesn't interfere with what I want to do, it's there & I can feel it but it's quiet and I have energy to do whatever I want. I also feel more emotionally well during the calm 7. However, not only is this rare but now, when I jump into doing things it shoots up quickly, sometimes violently and that's the end of it for me. I rarely have a calm 7 now; the lowest I get is a threatening 7; sometimes it's a moderate 7 but I have 1 or more of the 'signs'- super nausea & vomiting, extreme neck pain, eye or eyes tearing, outrageious dizzyness, significantly louder ear ringing, 'super' nose where I can smell everything, eye ball ache/pain, dropsy-I drop everything, mega yawning, super light sensitive vs absolute intolerance, confusion, memory trouble, foggy thinking, black-out floaters, bad mood, emotional, etc. I have bilateral Trigeminal Neuralgia of the ear & face. It started on the left side in the 2008 episode. It isn't my inner ear like and ear ache, but the top inner part of the outside ear would have a sharp pain in it that would travel across my cheek, under my eye, down my nose to end a my upper lip. It was only on the left side but in 2009 it started to be on my right side, just not as intense or as frequent. The only thing that helps this so far is Diazepam. I have silver & flash floaters non-stop; literally all day,every day. I have ringing in my ears. It sucks. It's non-stop, multi-level, multi octive, never stops but gets so loud sometimes that I can't hear other things clearly. In 2010 I went to one of those inpatient experimental head pain facilities. The first physician I met was so amazing. She was interested in my life & experiences, she wasn't judging or jumping ahead of the exam & picking just any word, symptom or sign out of the air. She had this long strip of paper and she asked me bunches of questions and documented each thing I'd experienced and the date. By the time she was done, we'd created a time line of my Migraine Disease. She told me that some Migraine sufferers have had some kind of TBI, accident or illness that precipitaed and likely caused the developement of migraines. However, approximately 25% of Migraine sufferers have what has been identified as Migraine Disease which is a Neurological illness with a progressive process that has no treatment or cure yet and very little is actually known about it. She said that was the group I fit into. She said the only thing to do is to continually try various combinations of preventative/chronic/acute medications and try to live a healthy, clean life to help me get the most out of my good days. I tried Botox, 1st injection was April 2014. Two weeks afterward I began to feel ill; flu like, weak, fatigued, tired, difficulty breathing and my large muscle groups were weak and had a strong ache. My Pain doc said those were normal reactions that should resolve before the next set of injections. He was right, on week 10 I noticed things were improving and by week 13 I was back to pretty much normal. No change in the Migraine. So we decided to move forward with the 2nd round. This time, by the 3rd day I had all of the same reactions and I was completely miserable. It was torture to do anything and I was really pushing hard to go to work every day. By the 12th week, there was very little improvement in the side effects and no improvement in the Migraine so the treatment was stopped. The long term problem that this caused me is that it made the arthritis in my knees go nuts; now I have that issue too and I'm getting just as much medical help with that as I do the Migraine Disease which we all know is not much. I believe it aggitated the arthritis when the large muscle groups were weakened by the Botox and the arthritic joints didn't have enough muscle support to function and I was pushing so hard to go to work and stay busy that the arthritis won the battle and now my knees are basically bone on bone. I'm not a hypochondriac, I do not enjoy being ill or in pain. I have seen many Neurologists, Headache Specialists, Chronic Pain Physicians & GPs in different States and I have yet to meet a Neurologist, Headache Specialist or Chronic Pain doc who has a thimble amount of info or understanding as this web site and others offer. I read on these sites all the time that they are out there & I should find one, yet I have not been able to do so in 11 years. The one I saw at the inpatient facility only practices on the team for the facility and guess what? The head MD of the facility ignored her completely and gave up on me due to the constraints of my commercial health insurance. My family has & still does suffer from this as I am a victim of this monster Migraine Disease. It has robbed me of everything and I no longer know how to deal with it. I feel that it is too late to do anything about it. I feel tired, fatigued, weak and beyond despair. I do not want to fail God or my family but I fear it's too late and the damage is done and is irreparable. I don't feel joy and I don't seem to be able to get inspired or exccited about anything these days. I look around me and all I see is the result of this monster - so many things not done. So Cathy, I don't mean to rob you of hope. I'm sorry this has been such a long, negative post. My story sucks and I don't believe it is possible for it to change until I'm taken to Heaven. But today God used you to show me that as a suffering human being, I am not the only one which helps me to feel a little less insane. Cathy, thank you and may God bless your journey and grant your inner most desire. Sincerely, Shannon
1. Joanna Bodner Community Admin
 Dear Shannon, First and foremost, we are truly grateful you found our community and we highly applaud you for reaching out and sharing your emotional story. It takes a tremendous amount of courage to reveal this highly personal and touching journey you are enduring. By sharing your story, you’re revealing an inner strength you may not have even known existed!! Again, we truly commend you! As you mentioned in your reply to Cathy’s story, coming to the realization that you are never alone when it comes to living with migraine, provides so many in our community an extraordinary amount of support that many are in need of. Please know that simply by you posting your personal story, has brought MANY the piece of mind as migraine can be a very isolating condition. At <a href='https://migraine.com' target='_blank'>migraine.com</a> you have an ENTIRE community behind you….ALWAYS feel free to reach out to us!! We wanted to especially say how deeply sorry we are to hear the untimely death of your sister, “your all time best friend”. Losing anyone in life close to us is heartbreaking, but as you mentioned, losing your number one supporter who knew your entire health history and knew just exactly how to get your through those dark and tough days is simply tragic. As we do with all our community members, we encourage people who have been through such hardship to get the support they deserve. Not only medical professionals, but support groups, counselors, etc. Many in our community find it extremely valuable. We would love for you to read more about this here: <a href='https://migraine.com/blog/top-places-to-find-support' target='_blank'>https://migraine.com/blog/top-places-to-find-support/</a> and <a href='https://migraine.com/getting-help' target='_blank'>https://migraine.com/getting-help/</a>. Additionally, we wanted to share a bit of information that you might find hopefully both encouraging and insightful. First, here is an article which discusses sugesstions on some of the beneficial ways to cope: <a href='https://migraine.com/blog/breaking-through-the-darkness' target='_blank'>https://migraine.com/blog/breaking-through-the-darkness/</a>. Secondly, you mentioned that you have explored endless treatment options despite being told “that there is no treatment” for your diagnosis. We actually have many articles relating to this very topic as this is a common sentiment expressed by the community. Here are just a few (be sure to read the comments at the close of each article as well): <a href='https://migraine.com/blog/tried-them-all' target='_blank'>https://migraine.com/blog/tried-them-all/</a> <a href='https://migraine.com/blog/ive-tried-everything-2' target='_blank'>https://migraine.com/blog/ive-tried-everything-2/</a> <a href='https://migraine.com/blog/what-to-do-when-nothing-working-for-your-chronic-migraines' target='_blank'>https://migraine.com/blog/what-to-do-when-nothing-working-for-your-chronic-migraines/</a> Lastly, you have done a remarkable job with seeing so many doctors (Neurologist, Head pain facilities, etc.) to keep pushing for proper diagnosis and treatment. If you feel as though you need any additional information or help seeking a specialist, I thought I would share this link to do so: <a href='https://migraine.com/blog/looking-for-a-migraine-specialist' target='_blank'>https://migraine.com/blog/looking-for-a-migraine-specialist/</a>. Shannon, we again thank you for sharing your story and we truly hope you continue to update us on how you are doing. Remember….we are ALL behind you!!!! Warmly, Joanna (Migraine.com Team)
2. tammy-lrome Member
 Shannon, Thank you so much for reaching out and putting into words what so many experience every day. I wanted to touch base to let you know that we're not just a bunch of articles. Every single one of our writers is a migraineur just like you. Some of us are doing better than others, but most deal with chronic migraine (among other painful conditions). That dark loneliness and isolation are all too familiar. Joanna shared a link to "Breaking through the darkness". That's my story. I've struggled with major depression almost as long as I've been dealing with migraine. Like you, I started getting migraine attacks when I was very young. I also noticed that you mentioned a move to KC in 2008. Do you mean Kansas City? Are you still there? If so, I'd love to meet you in person. I live in the KC metro area. I know of at least 6 other women here in town who have migraine. It's great to have support online -- even better when you have a face-to-face friend. If you'd like to chat sometime, just click on my name. That will take you to my profile where you can leave me a message. Please don't give up. There are some exciting new treatments coming very soon. You never know when that next treatment will be the one that finally works. If you need someone to bounce ideas off of or brainstorm, please let me know. Always here for you, Tammy ~ Patient Advocate for <a href='https://migraine.com' target='_blank'>Migraine.com</a>
cathys Member
Hi ShannonAW, Wow! Thank you for writing. I must say though, feel like such a whiner after reading your post. God bless you. I consider myself fortunate to at least have some days of a month with no pain. I cannot imagine being in pain every single day. I'm not even sure how to respond to that. I will pray that someone, somewhere can help find you some relief. I do hope you won't give up and will continue to seek a professional that will do all they can to help you live without pain. Please keep in touch if you can. Even a quick hello to say how you're going. I would love that! I will write you back as well. Prayers ...
tammy-lrome Member
Cathy, I am on my 6th round of Botox injections. It has been an amazing success -- better than any other preventive I've tried. It can take a few rounds to start working, so stick with it. I really do hope you find relief. Keeping my fingers crossed! Tammy ~ Patient Advocate for <a href='https://migraine.com' target='_blank'>Migraine.com</a>
cathys Member
Hello Tammy, Thank you for the note! I am keeping my fingers crossed as well. I have had several mornings that I've woken up with a headache. And headaches that could've been one of my "dreaded" migraines. Luckily, I took an over-the-counter pain reliever (I use BC Powders) and it went away after a couple of hours. I'm praying this means the Botox is a contributing factor to it not turning into a full blown migraine. This NEVER would've happened in the past. I'm certain of that. I am going to stick with the Botox because it's all I have left to try. I hope soon enough I'll be able to post a comment on here that's I'm relatively migraine free! Fingers and TOES crossed! Hugs to all, Cathy