New FHM from S.C.

View previous topic View next topic Go down

New FHM from S.C.

Post by FHMinGREERSC on Tue Dec 04, 2012 10:01 am

Hi, I'm a FHM from South Carolina. I have had bad headaches all of my life, but I started having migraines when I was a young teenager. At 15, I saw my first nero, and first CT, who said I had a tumor. By 18, and 5 doctors, and two more scans it was a cyst. Now at 31, and 30 doctors later, its FHM. I have tried every drug from OTC to cancer pain lollipops ($1200 USD each). Friday my doctor is told me that my body is rejecting the meds (both the preventatives, and the pain meds) and there is nothing else to try, and I should prepare myself.... What a guy, right? So please excuse me if I vent a little.

I have pain everyday, nuclear attacks 4-5 times a month, and I still need to work to pay the bills. I have had "professionals" telling me that I would die at the age of 21 because they couldn't figure out what was wrong with me. I can't go to a hospital when I am in pain, because I am "blessed" to have a condition that the TYPICAL treatment does not treat, so I end up looking like a junkie out for a fix. I have dealt with the looks from family, friends and co-workers the rare times I have retreated home to a cave when I could no longer stand. " It's just a headache!" "She's on drugs!" "She must be drunk!"
"GOD I WISH!!!"

I have lived through pain that most people could not endure, gone to work, driven home, cooked you dinner, did the dishes, and did not complain! WHAT DID YOU DO TODAY!

And what Now I'm to just give up! Pardon me Doc, but NO Thank You! I know that there is no cure, no Magic pill, But DO NOT tell ME to GIVE UP!


Sorry for the rant, needed to get that off my chest. As you may have noticed, I had a bad day. But I am doing better. I found this site. And I read some of your stories. it was very nice to know that I am not the only one going through this. I have had pain so bad, and so fast, it knocked me out of a chair. I go blind, I can't talk, can barely think. The sound of my own blood pumping could make me scream, if I didn't think that would kill me. My dad had bad migraines, but before he died, he said that mine seemed worse. I think he might have been right. Some days I get warnings before the pain. Do you? My sight goes, facial paralisys, then down one side. Next thing I know, I'm in WW3. But I haven't decided if that's the worst or the ones that hit you like bullet wrapped around the Empire State Bldg. Both can stay a few days, but it's how they come at you.

I guess I just wanted to know that there are others out there who are going through this. I usually try to keep my mouth shut. No one wants to hear that you are feeling bad around here. You just smile, say I'm fine, How are you, did you see that show last night? and move on with your day. After a lifetime of that, for a big mouth like mine, It can make you crazier than the migraines.

So thank you for making this site. Thank you for reading this post. Thank you for being "blessed" with my condition so I am not alone.
avatar
FHMinGREERSC

Posts : 13
Join date : 2012-12-04
Age : 36
Location : Greer, SC, USA

Back to top Go down

Re: New FHM from S.C.

Post by Lesley anne on Tue Dec 04, 2012 10:14 am

Hi there, welome! Sorry you had a bad day.your certainly not along in how you feel about your migraines and the effect they have on everything in your daily life. They become ever consuming but as you said and do, you pick yourself up and get on with everyday tasks and life. I do the same although at times I could scream. So, Welcome to a great forum where you will find many similar experiences and a great community to join in with. Take care

Lesley anne

Posts : 29
Join date : 2012-08-27

Back to top Go down

Re: New FHM from S.C.

Post by Laura on Tue Dec 04, 2012 4:18 pm

I'm so sorry to hear about your experience. My situation may not be a dire as yours, but I just saw a doctor for a "last hope" treatment and failed. And I can't stop working - I need insurance. I think I can understand some of your frustrations.

Where does one turn when one has tried it all and nothing has worked. I asked my most recent neurologist if my problem is psychiatric. I told her I would gladly go for that type of treatment if it would relieve the pain. She told me no, that my problem is a biological one. So after this last failed treatment that she referred me to - offered by a pain management doctor - I don't know what is left for me.

Margaritas anyone?
avatar
Laura

Posts : 206
Join date : 2011-08-04
Age : 52
Location : Baton Rouge, Louisiana, US

http://www.facebook.com/laura.elizabeth.phillips?sk=info

Back to top Go down

Re: New FHM from S.C.

Post by FHMinGREERSC on Wed Dec 05, 2012 1:29 am

I don't think that we are crazy. I feel like I am going crazy sometimes, but I know I'm not certifiable. I have seen those pain management guys. They gave me the lollipops for cancer patients to manage their pain.

I agree with you Margaritas for everyone! The only real benefit I have over my non-migraine friends, I can drink until I am stumbling, the next morning, my head acctually feels better! for a few hours at least. By about lunch time the regular daily pain comes back, but for those few first hours, I am in heaven!
avatar
FHMinGREERSC

Posts : 13
Join date : 2012-12-04
Age : 36
Location : Greer, SC, USA

Back to top Go down

Re: New FHM from S.C.

Post by KimbaK on Tue Jan 15, 2013 1:17 pm

I can't believe some people are allowed to practice medicine. I have chronic daily headache along with migraines and have recently developed clusters. Thankfully the clusters only last for a minute or so because they are so intense its all I can do not to claw my face trying to get the pain out.

Some doctors are flat out fools. Just because that idiot cannot help you does not mean that you are beyond help. You just have not found the right combo of meds yet. I go to a pain clinic and recently was prescribed Dilaudid tablets. I have ER bills that just make me want to cry. I asked for something strong enough to at least put me out of my misery for at least a little while.

Don't let that sad sack idiot take hope away. If you haven't tried it already there is a "migraine cocktail". It is torodal, flexeril, reglan (or phenergren if you are allergic as I am) and benadryl via IV or injection. I have torodal shots at home and the flexeril pills and the phenergren. I get benadryl pills or liquid and dose myself at home. Sometimes it works. I wish I could offer more help or support because I know how devastating it is to have a doctor tell you basically that you are on your own. "See ya wouldn't want to be ya" basically.

I'm still taking the preventives, don't know if it helps but the few times I have missed or skipped a dose my head became a jackhammer so I'm just going to keep taking them.

I take Relpax (latest triptan for me.) plus several other prescription meds. I do okay with this. I have pain but it is livable.

I just went back to a chiropractor. No real hope, but can't hurt. She adjusted my neck which gives me alot of fits. That pain is much better and my head seems to be taking the hint and backing off some. Maybe shutting off one trigger will let the others drop some.

Stay strong. This disease doesn't kill us but it sure teaches superhuman endurance.

K

KimbaK

Posts : 3
Join date : 2012-08-05

Back to top Go down

Re: New FHM from S.C.

Post by FHMinGREERSC on Wed Jan 16, 2013 12:13 am

Thanks, I do take the injections, and the preventitives. Same injections, but my preventitives are Topamax. This week I have had the worst nose bleeds. I'm thinking of trying acupucture? anyone try that yet? Well worth a try I guess. If nothing else mayby my wonderwoman strength will bend the needles and I can get gobs of money from USA Today wanting a story? RIGHT? Well Good luck to all!
avatar
FHMinGREERSC

Posts : 13
Join date : 2012-12-04
Age : 36
Location : Greer, SC, USA

Back to top Go down

Re: New FHM from S.C.

Post by pīwakawaka on Wed Jan 23, 2013 10:41 am

If you can find an acupuncture therapist that specialises in migraines, it's probably worth a try. Make sure it's one that will spend some time with you each session to discuss how the treatment is (or is not) progressing. The last one I tried, hardly spoke a word after the first interview (except to arrange the next appointment). During the several weeks I saw him, at no time did he ask a single question about how the treatment was progressing. That was a waste of time and money.

_________________
"I didn't mind getting old when I was young. It's the being old now that's getting to me." - John Scalzi Old Man's War, 2005
avatar
pīwakawaka

Posts : 272
Join date : 2012-03-11
Age : 68
Location : New Zealand

http://anotherspectrum.wordpress.com/

Back to top Go down

Re: New FHM from S.C.

Post by Sarah on Wed Jan 23, 2013 10:24 pm

My heart goes out to you. I often think that because we manage to somehow soldier on with things, people think our pain isn't as bad as for those who have a very occasional migraine so can retreat till their bed till it's over.

I've tried acupuncture a few times and I don't rate it personally. But that's just me - I know some people have had success with it.

Have you tried any of the supplements recommended for migraine, like coenzyme q10, magnesium, vitamin b2 etc?
avatar
Sarah
Admin

Posts : 588
Join date : 2011-04-21
Location : Essex, UK

Back to top Go down

Re: New FHM from S.C.

Post by FHMinGREERSC on Thu Jan 24, 2013 12:48 am

Thank you all for the advice. I have tried supplements. They turned my urine neon orange, but did nothing for my migraines. I did suffer some real pain for about 4 months during that treatment. But thank you for the thought! Smile My frightening thought is the only acupunture place around here is one of those clinic teaching schools? you know where the senior class works on you for $20.00. That's why I haven't been to keen to try it yet.
avatar
FHMinGREERSC

Posts : 13
Join date : 2012-12-04
Age : 36
Location : Greer, SC, USA

Back to top Go down

Re: New FHM from S.C.

Post by Tee on Mon Feb 04, 2013 12:03 am

Oh sweetie - I am sorry to read this... Hug

Wish I had a magic wand at times like this - dome docs need to walk a a day in our shoes ..grrrrrrr..........BUT there is hope... HM can be managed - it just takes a lot of time and hope.... it will not be cured with a pill alone - it has to be via a full migraine management plan and many life style changes - and just to add another level to make it even more difficult - -- everyone's is different. What I can see from what you have written is that you are pushing yourself... this is not gong to help and one of the hardest part of the illness. But knowing when to stop and rest is so important. Tok me 6 yrs to accept - I am ill - I have to rest.........

Back to basics - I am sorry if you know this stuff already - but its worth a read..as it covers the basic stuff

This should help you understand the stages - - if you can spot when stage ones starts - you can plan to stop... (I know easier said than done)
http://migrainetalkblog.wordpress.com/about/the-5-possible-stages-of-a-migraine-attack/

This will give you the heads up on aura - I suspect you have more than you think.....??

http://migrainetalkblog.wordpress.com/about/types-of-aura/

Triggers - this is a big part of the management plan - work out your triggers - remove them from your life....... if you can

http://migrainetalkblog.wordpress.com/about/types-of-triggers/


The other thing which might help with close support is this - http://migrainetalk.forumotion.co.uk/t955-hemiplegic-migraine-the-basics?highlight=Hemiplegic

Get everyone whom is close to you to read it - they need ti understand you have a serious rare migraine illness - it is genetic - it is very real - and can go chronic - you could get up in a wheelchair - if you need to scare them - do so.......... they need to start helping you.

Hug

_________________
I love you “Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship.” Buddha[/color][/i]
avatar
Tee
Admin

Posts : 1887
Join date : 2011-04-14
Age : 46
Location : Whitstable, Kent

http://migrainetalk.forumotion.co.uk

Back to top Go down

Re: New FHM from S.C.

Post by FHMinGREERSC on Tue Feb 05, 2013 7:14 am

Dear Tee,
Thank you for the websites, but what I want to know is, why do all of them always say that FHM is a childhood diesese? My dad always had this problem, my nero agrees that I will most likely always have this problem. When I ask my family to read these sites they say that I should grow out of this. well that will not happen anytime soon. The writers of these sites need to update their research. I have seen many people on this site that is my age or older with FHM or similar conditions and we are not kids waiting to grow out of our dilutions of pain.
avatar
FHMinGREERSC

Posts : 13
Join date : 2012-12-04
Age : 36
Location : Greer, SC, USA

Back to top Go down

Re: New FHM from S.C.

Post by Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum