(Closed) Health Issues Becoming A Disability

posted 6 years ago in Emotional
Post # 4
Member
944 posts
Busy bee
  • Wedding: December 2013

I just wanted to let you know that you’re a very brave person, migraines can be very disabling and frustrating to people who think you’ve just got a bad headache. I’ve had 2 mini-strokes in the past few months and I know that to the outside world, you seem just fine. Keep the faith and be proactive with your treatment and overall health.

Post # 5
Member
1360 posts
Bumble bee
  • Wedding: November 2014

Hey I am so so so sorry to hear this! I had a similar situation, I’m a med student in Costa Rica and the first two years were just impossible, they started in high school but once stress really kicked in I just couldnt get any work done whatsoever!

My neurologist put me on medication called valproic acid and then I thought I had an allergic reaction to it, which I didnt it was the cat lol and then he put me on sertraline, there are several other options for chronic  migraines, I tried all the natural remedies, yoga, brathing excercises, accupuncture but they didnt work for me, it is weird an inappropriate I guess but a friend suggested pot and that did work, mainly because it out me to sleep lol but I didn’t want to be a stoner so I didnt pursue that, but I do know/have heard of other people who use it for this reason alone, the time I did try it was a desperate situation lol.

Turns out I had cluster headaches, which are waaay worse and also migraines, so I totally get you! I had the cluster headaches for years and the meds for migraines wouldnt work all the time because they weren’t migraines! I was misdiagnosed for a long time because they are somewhat rare, <5% if I remember correctly and usually happen in middle aged men! Not 15 yr old girls which is when I started having them!!

Look for different meds, there is something here called Relert, I dont remember the pharmacological name right now but it is the only pill that will take them away once I start getting them, it’s.a rescue drug not for daily use but it is expensive!

 

Post # 6
Member
2743 posts
Sugar bee
  • Wedding: October 2014 - Disney

Have you seen a neurologist? Neurontin or Lyrica daily may end your headaches. I take lyrica for other reasons. Both drugs have about a 2 week adjustment period but could help you significantly. I have what a prior poster has though Cluster Headache combined with Hemapeligic and Basiliar Migraines. Non of the emergency drugs work for me my best option is to take a daily med.

 

As to disability though I’m an endurance athlete I also have RA. My fiance has seen me run 13 miles at sub 9, complete a half iron, etc. He has also seen me unable to walk from pain, or get to a point where the pain meds fail and I cant stay still. He’s literally been through good and bad with me. Realities is I’m doing much better than most people with my condition longterm, and eventually I will probably be taken down too. I will fight to continue running as long as possible though. When I cant run anylonger we’ve already looked at putting me onto a better bike, and eventually if we have to a recumbent. When we buy our home in 2.5 years we will be purchasing an endless pool as well since I swim when I cant do anything else. When facing a life with chronic illness your partner can really be your salvation. I’m lucky to have a man who is my cheerleader and my best friend when I need him most.

Post # 7
Member
982 posts
Busy bee

@chocolatecoveredstrawberry:  My Mum used to suffer from debilitating migraines – she would be stuck in a dark room for days, we’d have to get the doctor to make a house call to give her an injection to stop her vomiting, it was awful. She was taking an antihistamine (periactin?) daily to prevent them, which seemed to reduce the incidence of the migraines, and they stopped completely after she had a hysterectomy. A girl I used to work with got them too, and she was once admitted to hospital because she got so sick. Migraines sound horrendous, and I’m so sorry you’re going through this. Have you heard about Botox for migraines? If you haven’t already, you could look into that. Maybe a new neurologist will have some really good options for you to try. Wishing you all the best.

Post # 8
Member
155 posts
Blushing bee
  • Wedding: May 2013

i would look into going to johns hopkins for further evaluation by some of the best in the country. you really arent that far away from Baltimore if you are in West Chester and you should get a second opinion with the number of migraines you are getting a month without relief. 

I’ve gotten migraines since kindergarten. the frequency has waxed and waned over the years. i cant imagine getting them as often as you are and trying to function. 

Post # 9
Member
105 posts
Blushing bee

I am so sorry. I feel like I was reading my own story.

I get chronic migraines, sometimes every day for months. If not a migraine, then headache pain. 24/7. It never goes away.

Like you, my wedding is coming up in 4 months. I’ve also been scared I won’t be feeling well for the wedding.

Here’s my advice — there are certain things around the wedding that you can control and focus on those. My wedding time consists of 5 separate events, and I intentionally am spacing them out over 2 weeks, so I’ll have time to rest.

Find an triptan that works so you can take it — if needed — on your wedding day to get rid of the migraine. You can try to solve the bigger issue of why you’re getting these migraines later. Short term — you just need something that will work for your wedding day.

Start meditating and do other stress-relief stuff now. I’ve started meditating two times every day. I’m taking a few supplements for natural anti-anxiety relief. Experiment with those under a doctor’s care.

Pack a migraine emergency kit for your wedding — have your pills in there, an icepack, etc. Ask your bridesmaid to bring a folding recliner chair so you can lie down if you need to during the wedding.

I’ll keep my fingers crossed for you. I live the same kind of lifestyle you do — very restricted. I work, but have disability accomodations at work. It is a daily fight — but we are so lucky we have compassionate fiances to support us emotionally.

I’m saying this for both you and me — relax re: our wedding day, and know that it’s all part of our journey. At the end of the day, we will be married to men who love us, and that is *the* most important thing. Best of luck.

Post # 10
Member
2082 posts
Buzzing bee
  • Wedding: March 2013

@chocolatecoveredstrawberry:  Yes, I have struggled with illnesses throughout my life, as well. Right now though, I’m probably the healthiest I’ve been in a 3 years. I contribute my better health to exercise, vitamins, supplements and a healthy diet. 

During my childhood I suffered with a lot of allergies and respiratory infections. Later on, I took allergy shots, which seemed to build my resistance up against allergens. Since adulthood, I’ve suffered with severe endometriosis. Going a strong BCP for 5 years and losing body fat pretty much sent it into remission. After recovering from that, I had mononucleosis twice within a year. That recked havoc on my immune system. I never seemed to get my energy back on a consistent basis after that so I went to see a doctor who diagnosed me with Chronic Fatigue Syndrome. CFS is not considered real by a lot of the medical community. I did start the supplements my doctor suggested but working and going to school didn’t enable me to continue to pay for those supplements. I pretty much got sick with the flu or anything at the drop of hat after that. Then I met my fiancée, who pretty much lives at GNC. He helped me find the supplements I needed at a price I could afford. He also got me into eating more protein and lifting weight. He takes care of me when I get ran down, as well. I hope to finish college and start working again soon. I hope I don’t ever get to the point where I’m unable to work. With a lot of effort on my behalf and a lot of love on his, we’ll make it through.

Post # 11
Member
4930 posts
Honey bee
  • Wedding: October 2018

A high school friend’s mom had horrible migraines daily, and she started eating VERY clean and exercising more and she hasn’t had one since a couple days after she started. 

My own mom has migraines as well, though not quite as frequently, so I’ve seen how awful they can be. I hope you find something that works soon!

Post # 13
Member
2082 posts
Buzzing bee
  • Wedding: March 2013

@chocolatecoveredstrawberry:  Thank you! Yes, I am lucky to have him. Have you tried taking Magnesium? I find that it helps the headaches I get close to the time of my period, as well.

Post # 15
Member
331 posts
Helper bee
  • Wedding: May 2014

I just wanted to say I hope you find something that works!  I suffered with migraines for a long time and tests finally showed that I had psuedotumor cerebri/ intracranial hypertension. They had me take topomax and diamox which helped a lot but once they did a spinal tap I had instant relief — I ended up having to get several done followed by a blood patch but I am much better now.

Post # 16
Member
2082 posts
Buzzing bee
  • Wedding: March 2013

@chocolatecoveredstrawberry:  Yes, I would definitely recommend natural supplements and vitamins over prescriptions when possible. Unfortunately, medications come with a lot of side effects.

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