I'm Not Ok With Putting My Life On Hold!

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Hi all. I'm new to posting on this page but I read forums on here quite frequently. I read through the rules & didn't see anything against this type of post but if I'm in the wrong place please direct me to a better sub! Thanks!

 I am at a loss with my doctors, I'm sure my family is sick of my complaining & my frustration keeps growing so please bare with me as I explain my situation here. 

I am a 23 year old female who has suffered from chronic migraines & terrible menstural pain. I've tried countless numbers of medications prescribed by doctors & some non prescribed medications given to me by family members. I've tried everything over the counter possible. I've had friends who are nurses tell me different combinations of over the counter meds but never truly helps. I have an active & healthy lifestyle when I'm not in crippling pain stuck on the couch in pitch darkness & silence, it effects my vison & I end up getting physically sick & cant eat anything. The past few years these issues have effected the way I live my daily life and has effected my career. I have tried finding out what triggers my migraines with no luck. I've changed my diet, tried eliminating scents in my home, been on & off my other medications to see if they were triggering something, I've tried all the natural remedies & stuff like essential oils suggested from doctors, friends & family with headaches, & by doing research online. I even got my daith pierced properly because it was suggested by others & this offered no relief whatsoever. I used to work at a popular body care & home fragrance store but I couldn't stand the constant smells which made my migraines worse & some certain strong scents would trigger headaches. It got so bad one time I had to make another trip to the ER because I literally felt like I was dying. After that trip my manager told me that it was unacceptable for me to not come into work because everyone else gets "headaches" & they all work through them just fine. She hastily accepted my ER note & said if it happened again I would be automatically terminated. A week or so after I was hit with another migraine & asked if I could come into work a couple hours late because the store was already over staffed for a Monday & it wasn't vital for me being there. She then told me that if I didn't make another trip to the ER it wasn't serious & if I didn't show up I would be fired. I ended up showing up, puking in the bathroom & fainted but still wasn't allowed to go home. I couldn't afford to go to the ER again because even with insurance the bill was $1,000 & it was only a week after I had been the first time. I thought maybe all the stress from the full time sales manager at that job was triggering the migraines and didn't feel it was worth my health to continue working there when I wasn't respected by my coworkers & my health wasn't taken seriously so I quit the job but my migraines were still just as constant as before. I recently got another job at a bank and had to miss a day because I couldn't get out of bed then when I returned to work I still had the migraine (which went on for about 3 days) but was able to get some painkillers to help me get through the 10 hour days. It's very vital for me to have clarity while dealing with large amounts of cash! I love my job but I'm afraid that my migraines are going to cause me to lose this job one way or another unless I find something that works. I've been to multiple doctors & one neurologist. I've told them all what types of medications I have been on previously & what I'm currently prescribed which is only a 10mg minocycline pill to keep my acne under control. Everything else I have quit taking because after months & months of use nothing helps. I've been so desperate to stop the pain that my mother has given me a couple of her hydrocodone 7.5mg that she got for a shoulder issue it did help but not as much as I had wished & I didn't like the effect it had on me. I have also tried my fathers hydrocodone ibeuprofen (I forget what mg it was) & it's been a couple years ago so I forget how it made me feel. I've tried various NSAID's, tramadol, klonopin, flexeril, Vicodin, & I can't remember what else (yes I know it's not favorable to take drugs that are not prescribed to you, but please don't judge until you have been in this position). Basically anything that my husbands grandma who used to be a nurse says might help, I will give it a try. Plus it is coming from the hands of family members that I trust & I read the prescription information before ever putting something into my body! My husbands grandfather has ALS & a heart disease so he gets Oxycodone 30mg & on the days I feel like I am on my deathbed I will take those. Usually I will break them in half & so far it's the only thing that helps! I've stressed this to all of my doctors but they will NOT prescribe it or any type of controlled substance to me under any circumstances. 

Now onto my next issue (like I said please bare with me, I really appreciate it) :

Mensutral pain! What a joy to be a lady. 

I never suffered from cramps or any issues with my period UNTIL I started taking birth control in highschool. I hated the way it made me feel. When I wasn't having a migraine then I always woke up with a headache even if it was just a minor one. I started having digestive issues constantly even when it wasn't near that time of the month for me. The cramps were tolerable but I could tell they were not what I was used to. The medicine I was taking was making me feel horrible. I ended up going off of that medication and trying a couple others before they gave me a pill without estrogen in it. By then I had spent so many years dealing with all the effects that it didn't seem to worsen them but it also didn't subside any. My gyno is very hesitant to give me any form other than the pill because of how I have reacted to the others & she doesn't want to put me on something more permenant that would having a longer effect that I couldn't stop taking as easily as the pill. My husband and I are also planning for kids in the future & don't want to jepordize my fertility. Now the pain I struggle with is unbearable. About a week before my period, sometimes even earlier, I start getting horrible cramps & knife jabbing pains in my lower abdomen & pelvic area that usually end up being so bad I am doubled over sometimes crying. I get what I call "butt cramps" that hurt so bad when they hit that I can't sit down & it hurts to walk. Trying to go to the bathroom is a task on its own! I fear eating anything because I am so scared of having to go to the bathroom. Remember when I spoke of digestive issues? When I eat food goes straight through me. Healthy, unhealthy, liquids or solids. I've kept food journals for years & cut out certain products to try to find out if I'm allergic to something but nothing changes. Some days during my period I have diarrhea and other days it is normal but passing a stool hurts so bad that I cry. I try to relax my muscles and take my time but that doesn't help. The pain is excruciating and I have fainted at least 3 times over the years from how horrible it is. I get very light headed and start sweating. Usually this will start happening a week before my period and last up until a week after. That's three weeks of being scared to go to the bathroom! My gyno has put me on all kinds of medications from NSAID'S to even an inhaler to try to relax my muscles. I've been to physical therapy to try to relax my pelvic muscles. The day my flow starts I run a high fever & get headaches that sometimes turn into migraines. I've had blood tests & been checked for endometriosis & fibromyalgia. I've seen a  gastroenterologist & through all of this, they all say I'm healthy & nothing is abnormal. This also effects my daily lifestyle & my job because it hurts to sit down at work, use the bathroom so I'm afraid to eat lunch, & I often still have the headaches & feel like I'm going to pass out. Again back onto me trying non prescribed medications, the klonopin has helped some but never truly subsides the pain. I have found that the Oxycodone helps sooo much in both scenarios. I am unable to get any type of controlled substance & I've never been prescribed them before or ever taken them before my mom finally was fed up with the pain I was in, was getting frustrated with the doctors, & gave me some of hers. 

Both of these issues result in (IF I'm very very lucky) having a week out of a month that I am feeling decent. It effects my mental health because I am not able to participate in life, I'm not able to do the things I'm passionate about. I haven't been to a movie theater in over two years because I'm afraid it will trigger a migraine. I don't get to go to many concerts or amusement parks or the zoo with family & friends because I can't count on me not being in pain that day. I've missed birthdays & holidays, I've missed out on things that are very important to me. 

I am too young to be stuck inside my house as often as I am. I am adventurous & social, I love the outdoors, & I'm a strong career driven woman. I am not okay with putting my life (& my health) on hold any longer. 

I would really really appreciate any advice the lovely members and its community would be able to offer me. Whether that's your own remedies you have found helped, any other medications you have tried that I should mention to my doctor that are not controlled substances, or how to express to my doctor that I NEED a medication that will help me live my life!

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5 Replies

  • Posted

    Hiya,

    I have to keep this short I am afraid as I have very bad uncontrolled rheumatoid arthritis and its a struggle to write atm, so not because i dont care, but will just give you the most important info!

    I'm sorry you are having such a tough time. Have you been tested for polycystic ovaries? I used to have horrific periods and now mine are fully under control with metformin (for the PCOS) and cerazette (minipill).

    Topirimate 50mg twice daily is controlling the migraines and sumitriptan 50mg at the first sign of an attack. I notice you are in america. Sumitriptan here (england) is prescription but you can buy it over the counter in some other forms like imigran so maybe worth seeing.

    I sincerely hope you can find some answers and i fully sympathise with the frustration and emotional pain you are feeling at how your life is.

    Lots of hugs xx

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  • Posted

    Hi,you are describing my life with your terrible migraines and I really sympathise as you are so young.Have you tried magnesium?(at least 600mg daily)that worked for me when I was younger.Or maybe ask for botox from your neurologist.I know that it works for some and anything is worth a try when you are suffering so much.Somebody on here suggested sumatriptan injections to me so that may be something else to try.I can't offer much advice as I am still trying to find some sort of relief myself but I can say it's so comforting having this site and knowing that you are not alone.Hugs to you and please let us know how you get on.

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  • Posted

    So sorry to hear of this and some of your symptoms mirror mine...I can manage mine better now. I firmly believe my migraines, menstrual cycle, IBS and joint aches are all linked. On the food and digestion, I had similar symptoms until I discovered Mebeverine which I take 3 times a day before food. This stopped all the IBS symptoms and not being able to sit down (I was the same) and meant I could eat most foods which helped my health (I had anaemia and osteoporosis).

    For the migraine, taking a preventative treatment has worked best for me. I take propranolol twice a day - I know it doesn't work for everyone but for me finding a preventative medicine really stops the incapacitation of a full migraine. When I get one I take rizatriptan - although the same family as imigran, immigran didn't work for me, I don't know why but it's worth trying different ones. 

    For the menstrual cycle and pains, I had endometriosis and borderline PCOS and it took repeated visits to the gynaecologist to get anything done but I had laser treatment which helped. I came off the pill because it made my migraines and pain worse (even the drs said it couldn't) and then I had a coil put in. Even though everything I read about the coil said it would make things worse it actually alleviated most of the symptoms! 

    I hope you keep trying to find a cure and this site is so supportive. 

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  • Posted

    Hello.....My heart goes out to you.  Stress definetly brings on migraines and I know it's not easy not to stress these days.  Try things to relax you I hear Yoga is great.  Excercise is good too.  For me I take a Rizatriptan 10mg ODT on the ONSET of a headache...that is so very important.....when you "think" a headache is coming on......take one.   If I wait to see if headache gets worse and it does.....then it's too late for the Rizatriptan to work.  If 2 hours after taking the Rizatriptan the headache is not going away I take another but most times the headache goes away after the first.  The Rizatriptan 10mg ODT tablet you put on or under your tongue and it melts and goes into your body quicker.  If I am home I will lay down in dark room and rest as bit.  A friend of mine takes a Fioricet and ibuprofen together and that works for her. As I have mentioned before to others make sure you drink lots of water.

    We are all here for each other....you are not alone.

    please keep us posted

    wendy

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