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Empathy to all fellow Migraineures

I will be 72 in one day. In my 30 years dealing with this horrible sickness, I always had hope and optimism for my future. But now, I am seriously depressed and have lost so many activities, social life and even friends.

I was recently invited to the join/watch Migraine webinar summit online. I felt so disappointed I did not want to ruin it for all the newbies who have not done the research into this condition that I have. Since my headaches went from 1 a month to 2 a month for the first 15 years, I could work around it and live. Sort of. Then over the last 15 years they started ramping up to 2-3 really bad ones a week. Sorry folks, I do not wish to dampen your hope.

My Triptans have stopped working. So if I get a migraine it may slow down after 10 to 15 hours but keep some lingering reminders that it is not over. Like vertigo, weakness, bone and muscle pain, stomach upset and extreme fatigue and weakness. Swollen nostril and itching painful scalp and then it is back.


Yes, I have tried everything! Devices and all kinds of diets, elimination and otherwise, nothing has helped. But I do believe that there is a gut connection, but heck, I am not a Dr. I can’t get my Doctors to help me other than the obvious. Giving up food that have tyramine and caffeine.

At this point in my life mediating is not keeping the sadness away. When I am down for 5 days in a row, I do not speak or email friends.

All they say, is there has to be hope.
There isn’t!

At my age, I don’t see waiting 5 years for the newest drug to be released and affordable to help me. How do you live or function in life in isolated constant pain?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • mistymeadow
    2 years ago

    Hi
    I don’t live in America, I live in England but I have suffered with migraines since I was 11 years old, I am now 52. About 6 years ago my migraines took a sudden turn for the worse and I had a migraine that lasted 10 weeks with aura that took away my vision for 10 days. I was terrified. They tried everything, all preventers, migraine stoppers, everything. I was at my wits end. After 10 weeks the migraine suddenly stopped. It wasn’t to last. After 2 days it started all over again, Aura for 10 days that took my vision away and a hideous pressure, vomiting and thudding pick axe headache that went on and on and on. I couldn’t bear it. Whilst in week 10 of this migraine I suddenly lost all use of my left side and collapsed. I was rushed to hospital and was told I’d had a stroke. I did recover but now have left sided weakness and constant pins and needles down my left side. Whilst in hospital they put me on Epilim for my migraines. I told them it wouldn’t work as they had tried everything. After 2 days on Epilim chrono (sodium valproate) the migraines stopped. He told me it wasn’t a drug they normally give for migraines but it does seem to stop migraines for severe sufferers. I haven’t looked back. I only get a about 2 or 3 migraines a year now. It’s amazing, so maybe some of you severe sufferers could try Epilim Chrono. Slow release tablets. My heart goes out to you all as I got to the point of contemplating ending it all. Hang in there, help may be just around the corner.

  • DonnaFA moderator
    2 years ago

    Hi mistymeadow, Thanks so much for sharing your story with us. I’m so sorry that you had to endure this harrowing experience, but glad that at the end you got some substantial relief. We’re glad you’re part of the community! – Warmly, Donna (Migraine.com team)

  • Trisha27
    2 years ago

    Dear Ellen, Thank you for sharing your life and frustration with us all. I can relate to your feelings. After over 20 years with migraines, I decided a few years ago to just realize this is the new me. I suffered in silence for many years. I thought I would be seen as weak if I talked about it or asked for help. Migraine is very cruel because it is an unseen illness. You don’t look sick. I have lost friends and even family over it. I had 15 to 18 migraines a month for many years, tried many, therapies, drugs, botox, acupuncture, vitamins, ect…. I finally decided to stop and accept the fact this is my new normal. Zomig is the only abortive that helps me. I cannot take it daily or too much as I am 59 and do not want medication rebound migraine/ or a heart attack! I have learned to slow down, hug my cat, my dog, do what I can when I can, and live day to day with changeable plans. My family tries to understand, but for many years I plowed on without complaining and in pain. They were spoiled. Now Ellen, please focus on you. Spend time doing what you love, with the people that support and understand your disease. I too have given up on a cure. It set me free to appreciate every day as I am now. Don’t look back to the old you. Nature is a big soother for me. Just watching clouds, birds, taking a slow walk outside is so therapeutic. Have a cookie! Watch an old movie. Just not stressing out about my migraine attacks, and what might happen has helped me. I was a sun lover, but have accepted dark glasses and my vampire life! I can still get out there, just at different times in the shade. Keep in touch with true friends and family that understand you. I know my life is a gift. Even if at times it is so painful. I pray to God to help me through the dark times. Having this connection on migraine.com is a great help too! Hang in there sweetie! You are a gift to us all!

  • mygrainetoo
    2 years ago

    Happy belated birthday, Ellen and I’m sorry I didn’t see your post sooner. I just put off some errands and came back home to try to avert a migraine. The 84 degree and rising heat started making me feel like I was going to burst. Nausea and a fast onset of brow-line sweating are sure signs of oncoming migraine. It was my good fortune to find your post and several replies just now, like stepping into a cool, dimly lit room of soft welcoming voices!

    I’m 66 1/2 and totally relate to the loss of friends & social experiences. This started about 17 years ago and as I was given all kinds of antibiotics to cure sinus infections (that I know now were migraines), I’ve developed other health problems as more & more good bacteria was killed off during years of misdiagnosis. Losing friends because of isolation & not committing to activities has been a life changer. I kept thinking my “sinus infections” would get cured and I didn’t let on to most people how sick I really was. Occasionally I run into people from my ‘past life’ and they are usually cordial but arm’s length with me. My closer friends have become those who have chronic conditions of their own or have a significant other who requires help and care-giving. These people don’t take my absence, declining invitations or last minute begging off as a personal affront.

    Besides offering sympathy and empathy, my big recommendation is for you to try to find a support group for any chronic illness where you can connect with people who have the understanding you need. We’re some of those invisibly disabled people you hear about and you need to find some others like yourself.

    I am very lucky compared to other migraineures – I did find out about my absolute worst triggers to avoid, mostly food & drinks, and have a great doctor who tried several meds (fioricet does abort many of my migraines now), but I still get some out of left field and need to be able to email & text friends while I’m holed up, and I so hope you find some understanding friends, too.

    Best wishes, Ellen – you can always come back to this board and you’ll be in good company.

  • Mistchaser
    2 years ago

    Hi Migrainetoo – I used to have hormonal migraines about 2-3 times per month. Like yours, mine were diagnosed as sinus infections for years. One time I went to an Urgent Care Center and the nurse checking me in diagnosed me with migraine. I told her that no, I had been having sinus infections for years and she told me that’s how some migraines feel. The doctor agreed with her and convinced me to take a shot of Imitrex instead of prescribing an antibiotic. She said the Imitrex wouldn’t hurt me if it wasn’t a migraine and that I’d be feeling better very soon if it was. Well, they were both right! I was about 45 at the time and I’d been having untreated migraines for probably 20 years! Imitrex worked very well for my migraines but never stopped them completely. Long story made short – I have young onset Parkinson’s Disease (PD) that was diagnosed in 1996. I continued to have migraines until I had DBS surgery (Deep Brain Stimiulation) in November 2010 to improve the symptoms of Parkinsons. The surgery was truly a miracle all the way around for me (it isn’t for everyone). I’ve only had one migraine in the past 6.5 years and that was the same month that I had my DBS. What a double – miracle that was – to get rid of PD symptoms and migraines at the same time! I know that the medical world has been looking at DBS as a way to treat migraines, but don’t know where they are with the process. It’s something you all might look into. If I find out where DBS stands for migraine treatment, I’ll come back and post again. With real empathy for the disabling effects of migraines you all endure.

  • Ellensr
    2 years ago

    Thank you, migrainetoo!
    What a nice reply. I moved to this small town when I was 59 1/2. I was already getting more frequent sever headaches. But even then I had a few good days in-between. I was able to plant a huge privacy hedge behind a tiny 2 foot wall. Do a lot of nice landscaping things and so much more. I am lucky now to water those lovely plants every couple of days now in the very hot summer. I miss being active and so much more.

    I just saw a interesting movie (movies are my only hobby now) It was called ‘Me before you’. It made me cry, but I totally understand. It is about a wealthy quadriplegic
    who falls in love, but chooses not to continue. But then he was fabulously wealthy.
    I will look for a support group. However there may not be the kind of support I need here where I live. Travel is out of the question. Thank you for your support.
    Enjoy what ever you can now, no one knows what our future holds.

  • Ellensr
    2 years ago

    Hi, it is me the 72 year old Migraineur.
    i had to change my email and so I had to create an new account.
    thank you to all you compassionate readers.
    In case I forgot to tell you in the last post, I had made lifestyle changes for the last 30 years. that is why I am presently without much hope. I do not want to discourage you from improving lifestyle. Once you have done so, there is no going back. Although; I do not bake everything from scratch any more. Eliminating preservatives, chemicals and excess salt and sugar is now permanent for me. I am also allergic to antibiotics, so, organic is very important in all food groups.

    I just saw my Neurologist and I told him for the 100th time, Tryptans are not working anymore. So, when I feel the predrome coming then the (M) incident, followed by the postdrome; I am looking at 3-5 days for each migraine. They blend together in pain, discomfort and overall misery. I have tried antidepressants and had gained 40 pounds and nothing changed. This was over several years.
    Anti seizure meds (Topamax) gave me severe anxiety attacks. Depakote almost killed me, and I had to receive phlebotomy for 4 months to remove 2 pints of blood a week. All of this, and no change in severity or frequency of (M).

    One thing I know for sure, forcing yourself because of the opinions of others to “behave” like nothing is stopping you from a normal life, is ridiculous.

    I now have very bad Neuropathy and muscle cramps. I think it is a result of 30 years of taking vasoconstrictors (Tryptans) for the migraines. Nothing else worked, and now these have stopped working well enough.

    I woke up at 6:30 AM today with the migraine pain starting, I took one pill, 4 hours later, I felt it going away; then in another hour it started coming back. I took the second pill and now I wait. If I cannot knock this one out, I can look forward to a really bad day in bed tomorrow. This is how it goes. I know that I am in the small 1 % of society that is in this category. That brings me no solace at all. That says pretty much, you don’t count, there are not enough of you.

    There are no more lifestyle modifications that I can make to be healthier. Since I already have low blood pressure and meditate daily, stress is not a factor. In the last 5 years I have developed severe digestive issues (I believe medications are the cause) so, even my many supplements I have always taken are not helping.

    I still have friends who call now and then and say, if you headache goes away in a couple of hours, give me a call. My headaches do not go away! They drag on for hours and hours, and even days. I can check emails in-between, sometimes. But do not want to stare at a PC screen for more than 20 minutes. I wear special glasses to look at screens, so that is not hurting me.
    Acupuncture, sacral cranial, past life regression, herbal remedies, and Cefaly device;, to name just a few of the things I have tried. Since these treatments are not covered by insurance, I cannot afford to keep trying more.

    My home is chemical free and I only use natural homemade cleaners and even cosmetics. Yes, I have done it all. Again, I can never go back to ignoring my environment. Other than a Universal intervention, I see no lifestyle improvements for me.

  • H
    2 years ago

    I am so sorry. I know what it feels like to have chronic migraines and feel isolated. I had an intractable migraine for seven months a couple of years ago. I tried so many medications to get rid of it. Until I was on multiple preventative medications at once and I went way farther with eliminating my food triggers and environmental triggers (I wear Axon glasses everywhere outside of my house and I only use lamps and non-overhead lights inside my house, I only eat about 20-25 foods that I know are safe for me, etc) and I use Cambia instead of the triptans, life got better. I still have chronic migraines, but they are more treatable. I still stay home a lot and most people don’t understand. I still can’t work and I have to live a very disciplined life in regards to sleep, food, physical exertion, stress, etc. I also have severe gastritis from the Cambia, which is another whole problem! But I am in less pain when I get migraines and I am happier overall. Please don’t give up hope completely. See if there are other medications you can try or more lifestyle modifications. Even if they don’t get rid of the migraines, they might make them easier to treat and make your life better.

  • Turok
    2 years ago

    I feel your pain and I’m so sorry. I started getting migraines at about 14, I’m now 48. They went from a mild headache a week and a migraine once a month or so. It has gradually increased over the years to daily headaches and migraines a few times a week. I’ve tried all different meds that work, for most 3 months, before they become useless. The best they do is cut back some on the pain. Botox was useless, it even triggered them the day I got them. I avoid known triggers but that doesn’t stop the daily pain and only avoids migraines I can cause. But I have no control over the weather and never can quite avoid stress. I realize that the only thing we can do is pain management. I’m a man but it’s been passed down from the women on my mother’s side. I don’t have any kids and I’m glad I don’t just because I don’t want to pass it on. My boss at work gets cluster headaches so we tend to support each other. It’s difficult though with coworkers who always tend to respond with “I’ve had bad headaches but I still manage to go on.” I don’t want sympathy but I don’t to feel belittled either.
    I’ve had hernia surgery and knee surgery and never bother to use the pain meds I’m sent home with because the pain doesn’t even come close to my migraines. Actually the last time I was headache free was when I was given propofol for my knee surgery. That wore off about 5 hours after the surgery. It was about 10 years before when I didn’t have a headache and my friends thought I was high because I was friendly, happy, and smiling.
    I feel bad too for my loving wife. She remembers back when the headaches and migraines weren’t constant but she helps me as much as possible. Even mowing the lawn because the constant noise, even with hearing protection triggers a migraine or just exasperates my headache.
    My neurologist seems to have hope of stopping them but I think pain management is all I can do.

  • Savta45
    2 years ago

    Hi Luna.
    As upsetting & depressing as it was to read you post, I have to say, I get it. I hear you loud & clear. I’m 64 & have been dealing with these migraines for too long, since 2007. Before that, I rarely got headaches, & if I did, I took a couple of Tylenol & kept on going, & before I knew it, the headache was gone. I’d had 2 migraines before, many years apart, but never thought much about them.
    Now I have migraines 5 out of 7 days, for the most part. Some days aren’t too bad, & I can manage, & seem almost normal. But other days, & so,etimes for up to 5 days in a row, I’m toast. I’m in my bed, shades are pulled down, there’s no sound & Im praying the Norco helps enough to let me sleep.
    I’m currently taking Topamax as my preventative, but I honestly don’t know how much good it’s doing. I a, very limited in what I can take, because of a chronic blood clot history, & the fact that I’m on two different anticoagulants.Triptans are not an option for me. I’ve done biofeedback, acupuncture, been to a naturopath, had Botox injections, taken approved herbal supplements, all with no results.
    To make a long story very short, I get very depressed too. I’m on antidepressant medication as well, & I guess it helps. I try to keep myself positive as much as I can, tell myself things like, at least it’s not a term al illness, etc. And, I am! But it sure does mess with the quality of my life.
    I had to retire early, actually went out on disability, due to the migraines. I always envisioned my retirement as being a lot more active, learning new things, doing stuff, having fun. Not so much, as it turns out. I have some good days, once in awhile. But they are not predictable, so it’s hard to schedule anything. I joke & say that the good thing about having a day of severe pain is that it makes you REALLY appreciate the days that you don’t have it that bad!
    So, yeah, I get it. I have to keep going, I couldn’t do anything to myself for religious reasons, as well as my family. But, it’s pretty awful. And it’s awful a LOT.
    I do pray frequently. There is some comfort there. I wish you comfort as well.There IS always hope! Perhaps a new drug will be found SOON which will help us! It’s quite possible.
    All the best,
    Ruth

  • Luna
    2 years ago

    I am your age. My migraine experience has run the gamut from rarely to chronic. Didn’t become chronic until 10 yrs ago. A few years ago I realized that I was always in the “migraine mode”. A couple years ago they changed to silent 24/7 with episodic mild to moderate “headache attacks”. Preventatives don’t prevent and abortives don’t work either and the side effects are awful. I am functional every day, some days more, some less so. My biggest problems are smells/scents/odors of any kind except most foods. A big problem is I don’t sleep well. Can fall asleep but keep waking up. I’m sure this is not helping my overall being. Because of my super sensitivities it is difficult to go out much so isolation is difficult at times. Also, I know better than to drive when I’m not fully functional. And don’t tell me to ride with someone. The smell in their auto will make my head start swimming. It isn’t easy getting older, so I just trust in God and survive for another day. Never give up. Courage.

  • Savta45
    2 years ago

    I don’t drive at all anymore. I can be fine, or essentially fine one minute, & the next I’m getting a migraine, which is accompanied by ligtheadedness, nausea, & a tendency to make bad judgements, simply because I want to get home ASAP. Not such a good combination for driving safely. Or I’m on the Norco, which makes me sleepy, so, again, not safe. So, I depend on my husband to drive me. I don’t want to even get into how that makes me feel. He doesn’t always want to do what I want to do, go where I would like to go, etc., but I’m dependent, so I’m stuck. Like I’m a little kid. If he does something for me with the car, I have to be appropriately grateful, etc. It’s not pretty.
    And, the idea of getting out & about is all well & good if A) you have the transportation, & B) you can even get out the of the house without being in even worse pain than you are at home! Very often, just walking from my living room to the bathroom will make me a lot worse, so getting out & socializing? Trying to act normal at that point? I don’t think so. Oh, & did I mention that the migraines make me stutter? So, people can’t understand me, they don’t have the patience to listen for what I have to say, & it’s altogether an incredibly frustrating experience. And the more frustrated I get, the worse the stuttering becomes! Can I just get out of here before I throw something, please?!?

  • Tamara
    2 years ago

    Forcing yourself to get out of the house and at least be around “normal people and life”. I know the isolated feeling and pain levels but depression also does increase the pain.

    Staying at home because it hurts too much DOES NOT decrease the pain when it has gotten to be chronic. I have gone through this in the last year and a bit. I’m 29 and losing everything I have worked for and like you have tried many many treatments and losing hope they will lessen. Suicidal thoughts, depression and anxiety about my future have been a major part too.

    I have weekly talks with a psychologist (on my 5th one though, kept getting bounced around, and my current one I love is going on maternity level in June :'( darn!), on two different meds (again took 4 tries and a year to find what worked) and I do still have hard days. But sitting at home curled up on the couch does make it worse – you have to trust me. I didn’t believe my psychologist for months and ignored this advice but he was right.

    Just going to the grocery store and chatting with the cashier sometimes is all it needs, or call up a friend and chat for 10-15 minutes. Or asking someone to just come and sit with you in silence even – anything to get you out of your head. Get a gentle massage – just for the human contact and touch. Yoga class is my favourite when I’m not massively sore – around people, but not expected to talk and interact – and forces me to listen to my body and relax.

    I know it’s hard and feels impossible, but getting a handle on the depression side is very important. It has helped me with the pain a touch so at least I can get off the couch (most days) and get a little exercise in which helps as well.

    Hope day is gentle on you

  • DonnaFA moderator
    2 years ago

    Hi Tamara, thanks so much for taking the time to share a little of your story, your insight and your kind words of support. You are so right that human contact is important. When that is hard to find among your circle, you might have to look elsewhere which can be daunting when you are in the middle of the emotions that come with a chronic condition. Top Places to Find Support with Living with Migraine, an article on the site, can help with some resources to make needed connections.

    For you, Tamara, have you spoken with your therapist and asked her for a recommendation of someone that shares her treatment philosophy and has a similar manner? She may be able to connect you with someone who can help mitigate the change. Thanks again for stopping by to share your thoughts, and I hope the day is gentle to you as well. -Warmly, Donna (Migraine.com team)

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