My Headache Story. I'm Exhausted by It All!

By nbichon

1 min read

I am a 49-year-old female and I have a headache or migraine ALL the time. This has been going on for years and getting progressively worse. I have seen countless neurologists including a 4-day work-up at the Mayo Headache Clinic only to be told, “You have migraines. What drug do you want to try next?”

I classify my head pain in 2 different ways (though the Mayo Clinic classified them all as “migraine”): migraines always happen on the left side temple or behind my left eye and are only relieved by Imitrex injection (pills no longer work).

Cluster Headache

The other type is a chronic daily headache which is always “on” but is made worse by any type of exertion (and I mean any). This pain is almost always on the right and is pulsating and pounding. The only thing that relieves this pain is Indomethacin 150mg+. These headaches have all the signs of low CSF and I have had my CSF pressure tested twice (which was perfect) and I had a blood patch just in case I had a leak somewhere. No change.

I have tried it all: botox, massage, acupuncture, orthobiotomy, Alpha-Stim, Imitrex, Maxalt, other triptans, propranolol, amitriptyline, gabapentin, Topomax, Aimovig. And probably a bunch I can’t remember.

I had a full hysterectomy because my cycle affected my head so badly. HRT helps with the migraine even though I can’t get my doses completely right. I tried to go without HRT. Not good.

MRI, MRA, MRV, CT of head including sinuses. Nothing. Completely healthy. I’ve never even had a “bad” vital sign.

Another factor is that Imitrex injection is the only thing that I can use for the migraine, but it gives me a HORRIFIC rebound headache that only Indomethacin relieves. I think I’m in a constant state of rebound and I always try to not take any medicine but it’s nearly impossible.

I feel I can control the migraine but it’s the daily pressure headache I CANNOT figure out. It’s exhausting.

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Peggy Artman Moderator
<inline-mention user-id="3846705" username="nbichon"/> , it sounds like you are really having a rough time after trying different kinds of medications. Has your doctor ever recommended some the newer CGRP preventive medications, such as Aimovig, Emgality, and Ajovy? These medications are used only for migraine prevention. I know you have been using Imitrex as an acute medication, but there are other triptans that may be worth trying. It also may be a good idea to try and identify your triggers. Barometric pressure is a common one for many people. I know you have already seen doctors, but do you have one now? Headache clinics can be a good place to start, but you might find another doctor that understands you. Here is a list of articles about triggers and also a doctor finder. I hope you find some relief soon. ~ Peggy (Migraine.com team) <a href='https://migraine.com/trigger-tips/' target='_blank'>https://migraine.com/trigger-tips/</a> <a href='https://americanmigrainefoundation.org/find-a-doctor/' target='_blank' rel='noopener noreferrer ugc'>https://americanmigrainefoundation.org/find-a-doctor/</a>
Peggy Artman Moderator
<inline-mention user-id="3846705" username="nbichon"/><inline-mention user-id="3846705" username="nbichon"/><inline-mention user-id="3846705" username="nbichon"/>
atulkansagara Member
I feel sorry about your migraine. You may try suminat + Neproxan by consulting socialist.
beachbumgirl Member
Nbichon- you sound a little like my case. I found help through The Jefferson Headache Clinic in Philadelphia, Pa. I was admitted for 1 week and had an IV infusion of several meds including: Lidocaine (this took my migraine away within 4-5 days!), Magnesium sulfate, Dhe and others. I am returning ( eventually after the pandemic) to try ketamine infusion. My migraine specialist just started me on Namenda. I’ve tried 66 other meds, multiple treatments and 2/3 CGRPS. I hope this helps. Wishing you less than Chronic daily migraine 
1. Allyson.Ellis Community Admin
 Thank you for sharing your experience with the community, beachbumgirl! You have been through a lot of different treatments! I hear what a difference your stay at the Jefferson Headache Clinic has made for you. One of our contributors has also gone for regular infusions as well. She wrote about her experience with ketamine infusions, which I thought might be of interest to you: <a href='https://migraine.com/living-migraine/official-study-results-from-headache-camp/' target='_blank'>https://migraine.com/living-migraine/official-study-results-from-headache-camp/</a> Please keep us posted on how your next round of infusions goes once they are scheduled. Wishing you a gentle day. ~Allyson (Migraine.com team)
2. Peggy Artman Moderator
 beachbumgirl, Its good to hear from you again! I'm so glad you were able to get into The Jefferson Headache Clinic. I've heard others say so many good things about them. I hope your pain decrease continues. Peggy (Migraine.com team)
karld71 Member
I am not a bot or trying to sell anything...I had migraines for over 20 years, headache or migraine nearly every day. I tried all kinds of meds, acupuncture, chiropractor, dry needling, Botox...sane thing. I finally went and got the daith piercing about 8 months ago. I’ve had 1 migraine this year. Serious, ONE!! I will tell everyone, scream it from the mountain tops...this is the only thing that actually works for me. I don’t take any more medications, no emergency pills to carry around, no more shots!! I’m a whole new person.
1. Melissa Arnold Community Admin
 Hi, Karld! Thanks for chiming in -- don't worry, your comment is totally fine. 😀 I'm so excited to hear that daith piercing worked well for you! I've always been fascinated by them, it's wild how the body works! There isn't a lot of research on it, and we've seen people have both positive and negative experiences here, but I'm glad for anything that can help. Keep us posted. Best, Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
carrib Member
I know this may sound crazy , but I have suffered from migraines and headaches for years , have been on so many prescribed medications and will be now starting a injection that is fairly new but has a very high success rating , but the last two years I have been taking otc headache tension medicine and I have found it to be the ONLY thing that takes my headaches away and prevents my migraine from coming on . Crazy as it sounds it has done wonders for me . Excedrin tension or migraine works but the tension one seems to work better for me and it doesn’t have to be a name brand just has to be for headaches oh and I have to take 5 pills for it to work but it works for me. I’m looking forward to the injection I will be starting cause obviously I don’t want to be so dependent on my headache otc pills . Good luck
lizard123 Member
I'm so sorry you've been dealing with this! It is so frustrating to try so many options and have nothing work. Your story sounds a little like mine. I get what I call "regular migraines" most days - they are like the standard migraines, and last hours to days based on how well my acute meds work. I also have this constant pain/pressure in my left forehead. It is about the size of a pencil eraser. On good days it's just a gentle pressure of a pencil eraser pushing from the inside of my scalp. On bad days it feels like a screwdriver is being pushed through my forehead. For me, the best acute treatment I've found for the "regular" migraines is Ubrogepant - it's brand new and I got a savings card online because it's so expensive. Unlike triptans that stop my migraines where they are, or slow them down a bit, the Ubrogepant actually makes me feel some degree better after 1-2 hours (and often much much better!) For the "forehead hadaches" the best thing I've found is keeping my neck in very good posture, and Aleve. I don't know if I'm imagining it or not, but I swear my forehead pain *feels* like it's coming from a pinched nerve in my neck. If I pay attention, I can sometimes feel that head movements trigger an extra burst of pain. And when I sleep with a neck support pillow, keep my neck in good alignment all day, and do all the stretches/exercises that help my neck, I really do think that it's better the next day. (Difficult to maintain all this, but trying my best!) My biggest problem is that I can only take the Aleve 14 days/month, and the Ubrogepant 8 days/month. So I have a lot of days with pain that I can't do anything about, which is so frustrating. You current situation kind of sounds like back when I was taking Advil and Sumatriptan (instead of Aleve and Ubrogepant). Neither worked very well for me personally, so I was taking too many of both, and also getting rebound headaches on top of everything else (which to me feel like I have a metal beanie on my head squeezing down everywhere). I hope you and your doctor can figure this out!!!! I am still looking to try anything that will help. I'm testing out my 3rd preventative right now (Botox). It's the most effective out of anything I've tried. And I'm trying to be optimistic that I'll find the right cocktail of preventative and acute. If I could get down to 14 migraines/month, then I could take my meds whenever I have a migraine! That's my goal right now. Again, I am so sorry you are going through this. It is so frustrating to not know why things are happening, and not have a way to make yourself feel meaningfully better. Gentle hugs!!! (And please do post if you find something that works. I would love to learn what helps you!)
1. Allyson.Ellis Community Admin
 Thank you for joining the conversation, lizard123. I'm so glad to hear that Ubrogepant has been a positive new treatment in your toolbox for migraine symptoms. It is amazing to have a medication that not only helps to take away the symptoms but actually helps you feel better! I hope as you continue with the various treatments you are using that you can get your migraine days to a manageable number. Please keep us posted on your progress! Wishing you a gentle day. ~Allyson (Migraine.com team)
tgw67 Member
Hi there It amazes me just how different our migraine stories are?! For me it started with Tension Headache around the age of 11/12 when my periods started. Then, at the age of 19 my migraines kicked off around about the time that my dad died. Since then I have tried a number of drugs a number of times and myriad alternative treatments; the cocktail that works for me is a combination of dietary changes, regular yoga, cranial osteopathy plus, and THE most significant, the teachings of a wonderful lady, Olivia Roberts. Olivia started off as a pharmaceutical rep but her passion was to find a remedy for her own ailments (including migraine amongst many) as well as for others. In helping herself she developed techniques predicated on Neuro Linguist Programming. With her help I was able to gain some control and some relief and it was this that transformed my migraine experience. If this type of thing appeals to you I would direct you to her website <a href='http://www.resolutionmagic.com' target='_blank' rel='noopener noreferrer ugc'>www.resolutionmagic.com</a>. Olivia may now be retired but as she told me just last year, she still loves to help people .
tranquil106 Member
I am so sorry that you suffer this severely with migraine and rebound headache. I really feel for you. You are in a vicious cycle and I would not be at all surprised that you also suffer with depression brought on by living with this day in and day out. I know nothing shows up but have you ever had an injury to the neck or been knocked unconscious? I have had migraines since I was 16 yes old. At first I didn't think anything, I would just take 600 mg of iborofen as the usual doseage of 400 mg wouldn't touch it. By 1998, I started to suffer with migraine a lot more and this included left-sided pain, from the top of my head to the bottom of my foot. The top of my neck, under my shoulder-blade, my ribs, hip, buttock, knee; all was particularly painful and started to have an impact on my life. I used to take my son to school & come home to bed. Sometimes I would loose my speech. If I over exhausted myself I would suffer. My life came to a stop and I tried to find out what was wrong with me. It took two and a half years, to be diagnosed with 'Complex migraine with limb-pain' & prescribed amitriptyline. In this time, I had also become depressed and was put on antidepressants. Amitriptyline didn't suit me and I tried numerous drugs. I saw a chiropractor regularly, became interested in crystals)spiritual healing. I managed to reduce the frequency of my migraines and started to get my life back. Skipping a long way forward to now, I still suffer with migraine and left-sided pain. I have a new diagnosis of 'Migraine with sensory aura'. I am on another triptan but I am thinking maybe I need a nerve-block or something to as I don't know what comes first. The migraine or the neck pain. I am suffering more again due to the menopause. Such fun-not! I asked you if you had ever had a head/neck injury as I got knocked out by a punch once and got hit with a lump of wood. This occurred by the age of 16 years. I have read somewhere that this can cause migraines but unsure. I must go as I need to get on with my day. All the best.
marycp Member
I feel like I’ve just read about my life, only I’m allergic to all NSAIDS in varying degrees so I use Fioricet and usually use an Imitrex injection at onset then take, Benadryl, Phenergan and oral Imitrex when I can not puke.

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