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50 Years & Older Living With Migraine

Aimovig constipation

  • By mela14

    Has anyone had severe constipation with Aimovig? I took my first injection on October 3, 2018. I thought I handled it OK and didn’t experience immediate side effects. I have been going through some other health issues right now which have exacerbated my fibromyalgia and my chronic fatigue. I have been exceptionally more achy and painful and muscles and joints all day not only when waking up in the morning. I didn’t attribute it to Aimovig Nurse Linda when it was just a flareup of fibro because of other things that I’m going through right now.
    Last week my doctor started me on 20 mg Librium at bedtime and thought I was handling it OK. I tried the Librium about three weeks before and had to stop after five days because of side effects. But I was also taking melatonin at a time which gives me terrible headaches nausea and stomach pain. So when the doctor asked if I wanted to give librium another try I did. Service Wednesday which was my sixth day of Librium I wound up severely constipated on able to go in when I did I had terrible pain afterwards. I assumed it was from the Librium I didn’t think it could be from a moving because it was so long after the injection. I’ve been taking still softeners to help what do you domino pain and IBS flare up has continued. Just curious if anyone else has gotten severe constipation with Aimovig Nurse Linda tending to think that this constipation is From the Librium. My am a big injection was October 3 and the bad episode of constipation was October 31 so that’s 28 days later.
    I’m so confused. I spoke with my doctor this morning and told him how I was feeling and he told me to stop the Librium. I hadn’t even given Aimovig Nurse Linda at that time. I’m just reading now the constipation can be a side effect. Can the side effects hit weeks after the initial dosage?
    Any thoughts on this,
    Mel

    reply
  • By mela14

    Sorry for the typos they were from my iPhone but I guess you can make out what I was trying to say. There is no nurse Linda that was a typo(should have said consideration) and the severe constipation I experience was this past Wednesday, October 31
    Carmela

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  • By Nancy Harris Bonk Moderator

    Hi mela14,

    That’s the worst, I’m sorry you are experiencing it. I’ve heard from others who are experiencing constipation and muscle/joint pain.

    When I was taking methadone for chronic pain years ago I was extremely constipated. I tried OTC pills, prescription pills and finally lactulose. None of these options were very successful. I found a fruit paste from a cancer site I made and it was FABULOUS! No more issues with constipation after I ate 1 tablespoon a day!! I kept it frozen and had it before I went to bed. You can find that recipe here: http://www.cancerlynx.com/fruitpaste.html

    I hope this helps!
    Nancy

    reply
  • By mela14

    I’ve been taking stool
    Softeners, digestive enzymes and probiotics. I’ve also been having lots of homemade chicken soup with carrots and celery and that has things moving along. The problem
    Is that right now even with an easy BM I have cramping pain afterwards. I’ve alwsy had this when IBS flares and takes a while to simmer down. Right now I’m laying down after breaksfast with a heat in my belly but think I’ll need to take Bentyl to stop the kinky pain.
    My stress level has been high due to fibro pain and headaches. That doesn’t help the IBS.
    I’ve also been tapering g off Ativan which is difficult in itself
    And causes a bunch of other problems. Mostly withdrawal issues.
    I was due for my 2nd Aimovig injection yesterday’s and was holding off a few days to see if I was going g to take it. I have a headache turning to a right sided migraine now. I had difficulty sleeping due to muscle pain. There are just too many things happening all at once. I need a break from pain. I don’t know what is coming from what. The past year has been the worst ever for me with health issues stil trying to recover to get back to my old normal and be more functional in life. I’ve been home bound for the longest time that I feel so disconnected from everyone and feel like I really don’t fit in anywhere. All this is very isolating.
    Wishing you all better head days❤️
    Mel

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    • By Anonymous

      CGRP is important for mucosal protection in the gut. I found an article by Lawrence Robbins, MD, (and pasted the link here below my text).

      Almost halfway down the page in the “Gastrointestinal System” section, you’ll see he’s asking several questions: I quote directly , I hope this is ok
      https://www.practicalpainmanagement.com/pain/headache/stake-possible-long-term-side-effects-cgrp-antagonists?page=0,1

      ” 3. For those with, or at high risk for Inflammatory Bowel Disease (IBD), should these antagonists be restricted? Caution is prudent in considering the mAbs for those with IBD, or at high risk.

      4. CGRP acts in a biphasic manner on GI motility. Should the antagonists be used with caution for those with moderate or severe IBS? Particularly with IBS-C, the mAbs may exacerbate constipation. Less often, diarrhea may be worsened (in theory). ”

      Source: “At Stake: The Possible Long-Term Side Effects of CGRP Antagonists” by Lawrence Robbins, MD
      https://www.practicalpainmanagement.com/pain/headache/stake-possible-long-term-side-effects-cgrp-antagonists

      reply
    • By Nancy Harris Bonk Moderator

      Hi skipper,

      Thank you for sharing that with us. I’ve heard similar concerns from other doctors. I’m looking forward to reading what Dr. Robbins has to say.

      Nancy

      reply
    • By Nancy Harris Bonk Moderator

      I hear you Mel, so very isolating and frustrating! I can tell you it’s taken me a LONG time to figure out where my pain is coming from, and some days it’s still impossible.

      I wish I had a magic wand I could wave and make it all go away for you!

      Here’s to a low pain day!
      Nancy

      reply
  • By cissy2018

    Hi my name is Tina and I suffer from migraines. My neologist told me about migraine.com. I have a question for you when you have gotten migraines does your head feel extremely sensitive? It’s like I am even afraid to move after the migraine has diminished.

    reply
    • By Nancy Harris Bonk Moderator

      Hi Tina,

      Thank you for your question and being part of the Migraine.com community. You’ll find support, information and details on the latest treatment here!!

      Allodynia is when painless sensations, such as brushing our hair, or air blowing across our skin, becomes painful. Allodynia may be comorbid with migraine disease, meaning they can occur at the same time but are not caused by one another. Allodynia can occur before and/or during a migraine attack. Here are a few articles that may be helpful; https://migraine.com/blog/migraine-comorbidities-cutaneous-allodynia/
      and https://migraine.com/blog/allodynia-attacks-may-contribute-next-migraine/ and https://migraine.com/living-migraine/scalp-hair-pain/.

      Don’t lose hope! There are many, many medications, supplements and devices that can be used to treat migraine disease. Finding the correct treatment can get frustrating and take a number of years to get right. Many of us need a combination of medications, supplements and devices to help manage our disease. I use Cefaly (https://migraine.com/blog/cefaly-migraineurs-review/) and a combination of medications, supplements and cannabis. We have an article on all the various medications available to treat migraine disease I can share with you here; https://migraine.com/blog/migraine-preventives-start/.

      Let us know how you make out with your neurologist.
      Nancy

      reply
    • By cissy2018

      Thank you Nancy for all your help and answering my questions. It’s been a very rough for me. I can really use the support. I will keep you posted on what my neologist says. I will look into the web sights you have recommended as well. Today I thought was going to be a good day turned into me having a migraine. Some days they last all day if not all day half the day. This is so hard it’s changed my life this last year 1/2

      reply
    • By Nancy Harris Bonk Moderator

      Hi cissy2018,

      We’re here for you! Support is so important when living with chronic illness.

      Hope your day improves!

      Nancy

      reply
  • By TheMigraineDoctor

    Hello Tina. I think you are having Allodynia which means stimuli which should not be painful hurts.Thus resting head on a pillow or combing or even wearing a necklace may be painful.Allodynia occurs when Episodic Migraine is getting transformed to chronic Migraine.Perhaps its time for you to talk to your doctor about starting preventive medication.Also peoples who are obese or take tobacco also are prone to have Allodynia.Specific analgesics like Triptans don’t work when you have Allodynia.Hope you will take care of yourself.Good luck.

    reply
  • By cissy2018

    What is allodynia? I also am notice that I can be ok in the morning but by afternoon the migraines start up again. This is like an on going process I am so tired I don’t know what to do anymore. We have tried Imetrex and topamax. Topamax worked for a short period of time now it stopped working so we are trying something else. The vitamin b2 and the Aleve. My face turns red when the migraines come on now. I will call my neologist and make an appointment.

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    • By GardensatNight

      My allodynia (and I’m sure everyone’s is different) manifests like extreme scalp pain. Like, I was always that girl with two hairbrushes in her purse and ALWAYS refixing my hair, and now, my scalp is so sensitized if my hair even shifts that I comb it once in the morning so it won’t move then DON’T TOUCH IT for any reason. I put ice on my head to sleep at night. Sometimes, when my botox is coming due, my scalp gets super-itchy and feels like a phantom witch standing over me, combing her fingers over my scalp. Like literally a person who isn’t there. Very creepy sensation. It is all worse during an active migraine attack. My scalp goes to sleep for a while after botox.

      reply
  • By GardensatNight

    I have not, however I take Miralax daily for something else and perhaps this may be preventing this. I realize not everyone’s system responds the same way.

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  • By cissy2018

    Joana thank you for the support and information. I have read through all of the sights you and Nancy have given me. I don’t think it’s normal to have a migraine every day??? I am lucky if I go 3 days with out getting one. Now I have noticed when one is coming on my face starts to ge flushed. I been having a lot of pain on the right side of my face now it’s the left side two. The dr put my on Lyrica not sure how to spell it. It’s starting to help some.

    reply
    • By Nancy Harris Bonk Moderator

      Hi cissy2018,

      Good to hear Lyrica is helping. Please keep me posted!

      Nancy

      reply
  • By Joleen1966

    I have had chronic migraine for 20 years. Back then it was quite a stigma and people couldn’t believe me. Now at least more and more info is out there. I’m on Botox and have had 3 series of shots. It doesn’t seem to be helping. I had a reaction to it and was put on steroids which is always a joy – NOT! Try not to lose hope. Try to stay optimistic. It’s hard but I think it helps.

    Sunshine…happy thoughts, easy rest

    reply
  • By Diana5

    Yes, by month 2 on Aimovig, experiencing serious constipation. Trying to minimize medication; but taking probiotics, fiber supplements, eating prunes, and taking stool softeners and cape aloe. Let us know if you find any simple way to keep things moving while on Aimovig.

    reply
  • By Nancy Harris Bonk Moderator

    Hi DianaS,

    When I was on methadone a number of years ago, I was VERY constipated. I tried OTC and prescription medications, to no avail. The only thing I found that worked is the Yakima Fruit Paste each night. I’ll share that here;

    http://www.cancerlynx.com/fruitpaste.html.

    When all esle fails, give that a try!

    Nancy

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  • By BillHam

    Hey Mel,

    Constipation is by far the worst side effect of Aimovig I have experienced. I eat two dried prunes a night and that seems to keep me regular without going overboard – good luck!

    David

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  • By Nancy Harris Bonk Moderator

    Hi BillHam,

    Thank you for sharing that tip with us. Prunes do the job for many of us impacted by constipation.

    Have you found Aimovig beneficial in reducing migraine attack frequency?

    Nancy

    reply
  • By paula64

    I started Aimovig three months ago, which has decreased my migraines significantly. Unfortunately a month or so after I started Aimovig, I began to suffer from severe constipation. My usual tricks for rectifying the situation failed and now taking miralax…hoping it works. Headaches are horrible, but not being able to poop is almost as bad. 🙁

    reply
  • By Nancy Harris Bonk Moderator

    Hi paula64,

    I hear you and I’m sorry you are having a rough time with constipation. Have you heard about the Yakima Fruit Paste for constipation? I used this when I was on methadone for chronic pain a number of years ago and it worked wonders. Here is the recipe: http://www.cancerlynx.com/fruitpaste.html.

    I started a new BP medication a few weeks ago and am having a VERY difficult time with constipation. The above fruit paste helps, but I need extra help as well. I take Colace at night….so far it’s been helping.

    Having migraine disease is tough enough, add constipation to the mix and life becomes even more difficult.

    Let me know how you are doing,
    Nancy

    reply
    • By paula64

      Hi Nancy. I haven’t tried the Yakima fruit paste. Right now I’m eating a lot of veggies, drinking kambucha, taking probiotics and then taking magnesium citrate every other day. That seems to help. I don’t eat any processed foods or cheese/dairy anymore. Seems like I immediately get constipated if I deviate from my routine. I didn’t get much relief from the miralax, but maybe I’ll try it again. Will also try the Yakima, thanks for sharing. Who knew I’d miss my daily “morning routine” so much. 😊

      reply
    • By mela14

      I had to stop Aimovig because of the constipation and other side effects. I waited 3 months from the injection of Aimovig and then the doctor had me try Ajovy. He said it’s not as constipatiing. He didn’t want me taking the Aimovig because the year before I needed surgery for an incarcerated femoral hernia….which came about from constipation and straining due to too much calcium supplementation. My orthopedic wanted me on it for osteoporosis ..:but he overprescribed and by the third day I was totally blocked!

      So January 6th I took my first Ajovy and within 2 days severe abdominal pain and IBS flare up along with debilitating muscle and joint pain. At first I didn’t attributed it to the Ajovy and ran from dr to dr because of the pain. I stupidly took the second injection of Ajovy on February 4th. Less than 2 days later all the same symptoms started up again. Thankfully I am keeping a detailed journal and see the exact pattern of symptoms. The IBS and pain from the Ajovy is unbearable so I will not be doing another injection.

      I can’t take prunes for constipation because it flares my interstitial cystitis.i looked at the ingredients in the paste and won’t be able to take that either for the same reason. I am taking stool softeners and probiotics and yesterday started back on magnesium oxide which helps. unfortunateky I woke this morning to abdominal cramping and pain and had to take a Bentyl to calm it down and am waiting for the pain to pass.

      I wound up in the ER last week because the pain was so intense. CT scan was clear. The ER doctor feels it’s the Ajovy. I called the neurologist and he will not be giving it to me anymore. I don’t think I will attempt Emgality.

      My migraines are worse! I don’t know what to do. I am seeing a new headache specialist at a headache center at a hospital near me in a few weeks. I made that appointment 3 months ago.
      I’m having terrible vestibular migraines along with facial pain and crushing right sided head pain with creepy crawly feelings and vertigo. I feel my head swaying and sometimes it feels like brain zaps.
      I also have a cervical component to all this.

      I can’t wait for the Ajovy to get out of my system! But…I’m so depressed because the migraines and facial pain have become unbearable. I am beginning to lose hope.

      Nancy, you said you took methadone in the past for pain. Was it for migraine pain? I don’t often take narcotics but yesterday after failed Relpax and debilitating pain I took a Tylenol #3 to take the edge off and allow me to sleep! I’m waking to the same facial pain and one sided headache today. I probably need something stronger but don’t do well with meds. I need an overhaul! I am so depressed because of all this and barely leave my house.

      I am hoping that this new dr can help me come up with a new strategy.
      Mel

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    • By Nancy Harris Bonk Moderator

      Hi mela14,

      Oh boy, I’m so sorry that these medications are causing more problems for you. How frustrating! Try to stay hopeful, as hard as it is some days, there a more treatments around the corner.

      Good for you on keeping a log of all the adverse events you are experiencing while taking Aimovig and Ajovy. I certainly don’t blame you for not wanting to try another after what you’ve been through.

      I wonder if trigeminal neuralgia is playing a role in your facial pain? I’m not suggesting you have this, rather something you may want to talk to your doctor about. This link has our information on this you may find helpful; https://migraine.com/?s=trigeminal+.

      Is this appointment with a doctor who is board certified in headache medicine? These experts can make a huge difference in our treatment plan.

      I was taking methadone for chronic head and neck pain that stemmed from a fall. It wasn’t great, I was very drowsy most of the day and could only drive for about 15 minutes before I felt too sleepy. But I didn’t have any pain, I’m not sure now the trade-off was worth it.

      I hope this helps,
      Nancy

      reply
    • By mela14

      Thanks for responding Nancy. I think I saw you at the webinar last week with Dr. Young. I was a patient at that office last year but saw a different dr. He admitted me for lidocaine infusions. It only helped a little while I was there. I decided to call hat office again and will be seeing the NP this Monday. I will keep the appt with the other headache center for March 4 as I have been waiting 3 months for it. Then I can compare notes.

      My local neurologist said I do have a form of trigeminal neuralgia. It flares up with migraines.

      He’s never been able to get me on a preventive because of my medication sensitivity and side effects. I think I took tegretol ( half pill) for a few days and it might have helped. I’ll havr to check my notes.

      I’m also tapering Ativan and that could be adding to my issues. I was so sick last winter and was placed on steroids for about 3 months and once I tapered that I used less Ativan so I guess I was going through WD and didn’t know what it wears. It gave me terrible tension headaches and more migraines. That’s when I was admitted to Jefferson. I had to do a slow taper to curb the WD symptoms and it had gotten better but still have a way to go.

      I somehow think all of these things are related. …adding in the reactions to the CGRPs! All I wanted to do was have a break from these torturous migraines
      Sorry for the rant Nancy. I’m feeling hopeless
      Mel

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    • By Nancy Harris Bonk Moderator

      Hi mela14,

      No need to apologize for ranting! When chronic pain and frustration are combined it can be very demoralizing. You’re definitely not alone in this department.

      Everything may be related, but with care at the Jefferson, some of the best doctors in the headache disease field, you are in good care.

      Yes! I loved that webinar with Dr. Young – he’s great!!

      I’m here when you want to chat!!
      Nancy

      reply
    • By Dana

      She always apologizes! That’s what we’re here for ❤️. I, too, hope Mel makes it back to Jefferson and if she finds a confidant in the “over 50 crowd”, that’s great too. She’s a great person going through a tough time and could use a lot of encouragement and support.
      I ❤️ Her to pieces

      reply
    • By mela14

      Love you too my friend ❤️
      I don’t think I can make it to Jefferson. Too sick and too much pain to get out of the house. Up during the night suffering terribly and my right head is crushing. Can’t go anywhere with this head and body pain. I’ll email you.
      Mel
      I finally round where I can upload an image!

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    • By mombear

      I have a question for those of you that have suffered gastrointestinal side effects from Aimovig. How long did it take for your symptoms to improve? Did they go away? I took 2 doses at 70mg on May 30,2019, and July 22,2019. After the first dose I thought I got a really bad flu= horrible stomach pain, nausea, chills. Turns out it is a reaction to the Aimovig. It is now Oct 19th and I am almost 3 months since my last dose. I still have horrible stomach pain that often lasts all day, wakes me up from sleep and sometimes causes nausea. There has been some improvement, but not a lot. I’m still miserable. All my tests are normal, thankfully, and the doctors have no clue why I am not getting better. I’ve taken all the OTC meds as well as prescription medications for gastritis and reflux. I’ve changed my diet too, but the pain is not associated with eating and there is no diarrhea or constipation. I’m taking Tylenol as needed and melatonin for sleep. My headaches and migraines have improved, ironically. Any advice, commiseration would be appreciated!

      reply
    • By Nancy Harris Bonk Moderator

      Hi paula64,

      When our morning “routine” is off, it can disrupt our entire day!!

      Fingers crossed for continued success!!!

      Nancy

      reply
  • By Clusters-Headaches-Gone

    Hi Paula, I wanted to share my story with you, my name is Michael.

    I would like to a acknowledge everyone who is suffering with the beast, I pray that my Son or anyone else out there will not go through the HELL I went through. I’ll tell you my story, it’s going to be about a pity party like no other. However, at the end I did find my cure and I hope you find yours. I was 22 when I was hit with headaches that didn’t want to leave. Thank God, I had great insurance. I saw several ENT’s – Ear, Nose and Throat Specialists, a Couple of Neurosurgeons, a couple of Chiropractors, an acupuncturist, some gentleman who put a hot iron on my head… believe me when you have this pain, displaced pain helped me to get through it. Long story short, I was finally diagnosed with what is referred to as Cluster Headaches, for which I was told that there was no cure. By this time, I had knocked my self- out, used a towel with a hot iron on my forehead several times, using a towel not to burn the skin to much. These headaches have a Nick name, as you may know, they’re called Suicide Headaches. I can believe why, one day I went to the beach just to try to burn out my left eye with the Sun… I told you this was about a pity party. I can go on and on about this pain, but I’m sure you have your own stories. I recently watched Kung Fu Hustle, I strongly recommended it. What I got out of it, is sometimes we’re put in an extremely bad situations to learn lifes’ lesson, my opinion of course. I danced with the Devil for close to 8 years. My redemption came with a young lady named Ani, she knew of my headaches and had me listen to a meditation tape. OK, please stay with me. When your in God awful pain you’ll try anything. I listened to this tape and to put it simply, it opened another door for me. I knew no one on the outside was going to help me, I tried everything I came across, so I figured I’ll cure myself. Please keep an open mind, it worked for me, everyone’s built different and I’m just sharing my experience. My cure was heaven sent for sure. Although, I cursed a lot, I kept the faith, sometimes it was less then a grain of rice, but it was there. How I cured my self was with mostly God’s help. I started meditating every hour I could, and what I mean by meditation may be different from others definition on meditation. For me, I would spend almost every moment of everyday concentrating on my hand and fingers, after a while I could feel the blood flow being pushed into my hands and fingers. I actually got a security job so I definitely had time to do so. After a while, I realized I could control my blood flow to each of my fingers at will, this took some time, but believe me, it was like winning the lottery 1000 fold. I woke up one morning with one of the worst migraines of my long line of episodes. I was done, I told God I was done. Then something phenomenal / remarkable happened. I had my hand near my head and I felt what can only be explained or felt like a small electric current. I thought to myself, could this be it. I pushed and pulled the blood through the left front side of my head where the majority of my pain was centered. Let me explain what I mean by pushing and pulling in detail. Once I had taught myself to control my blood flow, by focusing on one finger at a time. I felt by controlling my breathing ( Breathing in slowly from my diaphragm – pulling slowly) and breathing out slowly while focusing – pushing slowly) I could literally push and pull my blood circulation. I know it sounds crazy, but it worked for me. On my way to work that morning I felt what I can only explain as a vein vibrating or a small popping sensation down the left side of my nose. The Beast had left the building. I am not a doctor, this isn’t medical advise by a long shot, just sharing what worked for me. I’m 54 now and still Cluster free. THANK YOU GOD

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  • By Nancy Harris Bonk Moderator

    Hi mombear,

    I haven’t tried these medications yet, but hopefully someone who has will be along shortly to share their experiences with you.

    Best,
    Nancy

    reply