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Daily Headaches turned to Daily Migraines..similar story anyone??

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Posted 6/2/2011 8:10 PM (GMT 0)

I just wanted to write a brief story of my migraine experience. Also wanted to see if anybody else had similar problems.

--23 years old (female)--

 All the sudden one day at the age of 14 I woke with a really bad headache...which....never went away.

Everyday, all day I would have a headache. I would wake up with one, and go to sleep with one...and occasionally have such bad headaches that wouldn't allow me to sleep OR would wake me out of sleep.

*At this point i was still just having bad headaches (no actual migraines)*

My sleep was affected, I missed a lot of school..almost to the point where I didn't graduate because of attendance, and my principal told my mom I was a "part time" student. I didn't have any answer's at this point. I tried everything under the sun just like all you other poor sufferers do. (Thomas Jefferson Headache Clinic, PCP for medicine, anti deppresants, anti seazure meds, pain meds, triptans, beta blocers,accupuncture, massage therapy, diet change, physical therapy, Inpatient at multiple hospitals for IV DHE, All types of scans, blood work ...etc. etc. etc..........

^Those headaches went on for about 6 years.

about 3 years ago I noticed my once headaches were now turning into migraines.

I'd wake with a somewhat bearable headache, and then as the day would go on it would blow into a nasty migraine. Problem is I don't get aura's, sensations, or any type of sign a migraine is about to hit. Therefore "rescue" medicines have been of no help to me. Once I get these migraines, I absoultely cannot do anything about them.

I've currently had this particular migraine for a month, & have dealt with chronic daily headaches/migraines since I was 14. Not one day has gone by I haven't had pain in my head for the past 9 years. No lie.

Now on top of my chronic migraines, I also have depression, axiety, OCD and horrible G.I. issues like no other....

Like I said, this is a very very brief story. But has anybody else woken with a headache that never went away - for them to later change into daily chronic migraines???

I wish you all health & happiness.

-Jackie

Posted 6/4/2011 5:38 PM (GMT 0)
Hi there!!

Well I can't say now that I have them every day, but I do get them a lot and have been for the last 6-7 years... to the point where I demanded a CT scan to make sure there was nothing wrong, but everything came back normal.

I am 24 and suffer from Migraines a lot as well, and I also suffer from anxiety... I don't know if they can be linked in any way, but I know how annoying it is to have a migraine, it's almost unbearable!! I have a daughter who is 4, and when I get a migraine, I am barely able to function, and sometimes NOTHING will take them away, it's sad because I am only 24 and have enough prescriptions due to anxiety and migraines it looks like I run a drug store! My migraines have gotten so severe that Atasol 30, Demerol, and other prescriptions do not take away the pain! I find the green advil liquigels work more often than not.

But I seem to have rambled on more than I should have lol, but I do understand where you are coming from, going to bed with a migraine and waking up with it still there... it could drive you mad!! You're not alone, believe me!
Posted 6/6/2011 8:28 PM (GMT 0)
Hi! :)

I'm glad to hear theyre not everyday for ya anymore..that's great. But still getting them a lot and having been going through them for 6-7 years I would demand a CT too ha ha. SO happy to hear everything was negative. I as well have very type of scan, mri, ultrasounds, etc. done and they've all come back negative. And that's great news and all..but I want an answer ya know! argh haha. It's frusturating. It's nice to see someone els who's young and has been dealing with it since their teens. I really applaud you for dealing with your pain and still being a mom. Question...did you notice a change at all in your migraine/headaches since your daughters birth???

You stated you also suffer from anxiety and you don't know if it could be linked in anyway.
Well I'm no doctor but I highly believe there is a link to your migraines&anxiety.

I also suffer from anxiety and I know it worsens my migraines, insomnia, depression AND my stomach issues. Anxiety can really make your body go into a funky whack. What anxiety med are you on?


I decided to go back to my family doctor last week and I got started on 25mg of Zoloft for 10 days, and then bumping up to 50mg thereafter until I see him in a few weeks. He said I will eventually get up to a dosage of around 200mg. - Which is normal.
But he really feels as though that this will help me sleep (i cant ever sleep...ever) and also start making me feel happier because it is an anti deppresant. Once this medicine has been in me for a bit I really feel as though my migraines will be able to relax, and I will be able to sleep. I will be happier, less anxious, and hopefully eating more.

He also gave me Ativan .5mg because of my anxiety. I get very easily upset, I'm very sensetive and it's linked right to my stomach. Anytime I'm upset I need to be near a bathroom. I've noticed just in this short time that Ativan has reduced my visits to the bathroom. And I'm only taking it as needed.

-Jackie
Posted 10/17/2011 6:09 PM (GMT 0)
Hello,

I can't believe there is someone else out there like me. I have had a headache everyday since i was 13 I am now 32. I don't remember what it feels like to have no headache. I have only tried some pain killers the doc prescribed for me but they dont work, they make me feel worse. I have migranes maybe 1 to 2 times a week. My doctor doesnt believe tht I have headaches everyday and migranes as well i got a ct scan and came back normal so the doc thinks im lying. I also have gi problems, I am exausted all the time. I guess that would be my kids lol. but i feel as if im mre tired than most of my friends and family with kids.

I was reading your story and I thought someone was writing my story. lol How are you feeling now?

Posted 10/22/2011 4:25 PM (GMT 0)
Hi,

I started getting migraines in my teens, spasmodically at first and then as I got older they seemed to come more frequently, especially every month. Then at age 35 I had my son. A couple of weeks after he was born I started to get attacks that were very much worse and went on for longer, and the pain never really went properly in between.

As time went on this became worse and worse until I had continuous pain that wore me down and exacerbations of the same pain daily sometimes multiple times a day. Then I started getting exacerbations of the pain that went on for 3 days - these were worse than labour pain!!! Nothing seemed to work for long.

To cut a long story short I finally saw a Neuro who was a Headache Specialist who did various tests including MRI blood etc. After seeing him I was finally diagnosed a year later with a very rare form of headache called Hemicrania Continua and a further year after that with Chronic Migraine. By this time I was 54 years old.

I was given treatment that specifically helps HC but I can no longer take it because of a gastric bleed. Last Christmas I finally had an operation to implant an Occipital Nerve Stimulator (ONS) which has changed my life dramatically. Yes, I still have constant pain, but at a much lower level, and I still get the excrutiating exacerbations but not as frequently, I am finally beginning to feel alive again - I am now 58 years old!!!

So I think the moral of this story is never give up, one day you will find something that works for you!!! Just hope you all do not have to wait as long as I have!!!!

take care

Ann
Posted 10/22/2011 6:20 PM (GMT 0)
go to a neurologist. it can be many reasons why
Posted 10/23/2011 8:17 PM (GMT 0)

Hi Slobalt12

Your story sounds very like my  daughters who is  fourteen years old. 

9 weeks ago she started getting weekly migraines that last from 52 hrs to 84 hours. Before this she had probably had between 6 to 9 one day migraines in two years.

She is totally incapacited in a darkened room with  pain levels of 8-10 has had various medications prescribed but none as yet working. She to is woken up during the night with the pain. When reading your story it sounds so like my daughters. She to feels like a part time student with the amount of school she has missed over the last two months. I think it is also the transformation of your life which happens so abruptly which is hard to deal with as well as the actual migraines.

She is on 2 x 1.5mg of prizotifen as a preventative which will increase to three tablets in another week. We are hopeful that this drug will work and minimise if not stop the migraines. We have been told that it is likely that she has "daily chronic migraines" but that they need to occur over a three month period to be diagnosed. If you dont mind me asking what were your migraines diagnosed as? and could you function at all during a migraine, my daughter can't she is litterally bedridden. My daughter is depressed with her situation but I dont believe she has depression she has none of the other conditions you have.

I hope you find something that works for you it seems so cruel to have to cope with something like this at your age.

take care

Susan

Posted 4/14/2012 4:06 AM (GMT 0)
I have a 17 year old daughter who started getting migraines about 6 months ago. We are now at the point where she wakes up with a migraine on most days. She has missed an incredible amount of school and had to take medical incompletes in all her classes. She has seen several neurologists and just started to see an acupuncturist and a therapist so it's too soon to tell if that avenue will help. As far as medications, she was taking amitriptyline as a preventative and sumatriptan for pain, but they didn't help. She just started taking Topiramate (Topomax) but so far that doesn't seem to help either.

Although she says that she doesn't feel overly stressed, most of her headaches occur on school days so I wonder if there's a connection. However, she always loved school and was an honors student. I can't explain it but she rarely gets on a the weekend. I'm hoping acupuncture and therapy will help with any stress. When I read that some of you have been suffering for years, it's hard to not lose hope. I truly didn't realize there were so many similar stories out there.

If anyone has had any luck (or not) with acupuncture or anything else, please share.

Thanks!
Posted 4/30/2012 1:34 PM (GMT 0)
Hi Harvard.

Your daughter sounds very similar to my daughter who is 15 years old. Migraines every week predominatly during the school week. Lasting up to 3 days. Missing masses of school etc etc. We tried numerous medications, saw two neurologists and a pediatrician. She also wakes up with migraines too.

Like you I did not feel my daughter was overly stressed, just the normal teenage stuff that we all go through. Straight A student, likes school , I could not understand it at all.

What I have found after five months of keeping information on her migraines are specific triggers which if avoided dramatically reduce her migraines. She seemed to get more during the school week  because that is when the majority of her triggers came into play. Her triggers that I know of todate are:

1) getting up early has to be at school for 8.30am which means she has to get up at 7am. At weekends she invariably sleeps until 10am if not later.

2.) Missing out on meals at school. ( her friends tend to all go to the local shop and buy sweets or crisps my daughter would do this also) whereas at home at weekends meals are provided on tap and she eats and drinks regularily.

3. Lighting in the school, combine this with being on a pc and it is a definate trigger.

4. Her Periods: At first hadn't realised this was a trigger as she got migraines every week. but on closer examination it turned out the most severe migraines and the longest duration ones were when she had her periods.

It also took a period of time and learning for us to realise one trigger on its own will not give my daughter a migraine but a combination will trigger a migraine. I had also not realised that migraine triggers can have a cumulative effect. One of the neurologists explained it like steps you have to reach to get to your migraine threshold. He explained that our daughter was already up two steps before any triggers happened by her migraines being hereditory and by puberty and hormonal issues to do with teenage hood. Throw on an early morning rise for school, missed lunch, poor lighting  a bit stressed about the amount of work she was missing due to migraines and you have potentially reached your migraine trigger.

To be honest  we were sick of her being pumped full of medication that was not working and that her quality of life was zero. So what we did was negotiate with the school and removed our daughter from the school for a large part of the day. She goes in for one lesson before lunch, spends time with her friends and has one lesson after lunch. She is taught in a room with natural light for those lessons. She was also taken of the preventative meds she was on as they were not working. Since we have done this she has had two migraines lasting one day in the last 14 weeks. Wey hey!!! She has also managed to catch up on the previous five months of missed  school work by doing a lot of school work at home which can fit round her having enough sleep and making sure she eats regularily etc. If I had left her in school full time I really believe she would not have been able to sit her exams.

The next stage for my daughter is to work towards  full time hours in school once she finishes her exams in may. I am hoping after a break, as she matures, being on the pill to control her periods and hormones and trying a new drug that should theoretically minimise the duration of the migraine attack will allow her to attend school full time and maintain the quality of life she has at the moment.

I Hope the above info helps in some way. I can totally relate to where you are coming from in relation to not realising people suffer so badly with migraines I too felt like that last sept when reaching out for information to help my child and to be honest was totally despondent for my child in december after five months of weekly migraines.  At the moment I'm in a " there's light at the end of the tunnel" mood.

Ps. If your daughters waking up with migraines and is on meds that need to be taken at the onset of a migraine its  going to be really difficult as her migraine could have started not long after she fell asleep so by the time she wakes up in the morning she could have had a migraines for hours in which case the meds probably wont work in this situation. Just a thought as we had a similar problem with our daughter.

Anyway hope the accupuncture is working we did think about this as an option but have not followed it up as yet. I would be interested to know if your daughter has similar triggers to our daughter.

thanks 

 

Posted 5/1/2012 2:54 PM (GMT 0)
WOW!!! I cannot believe there are people out there with similar stories as I have. Yes mine will be a bit different as they all are, but in many ways they are similar.

As a pre-teen and teenager I would get a lot of headaches. Around the time of my period I would get migraines. I would have 10 out of 10 pain, eye pain, nausea with no relief, vomiting if I moved, light sensitivity, sometime auroras. I did miss a lot of school. To the point a letter was sent home saying my graduation was threatened as I was missing too much school. I went from having a A average in Middle school/freshman year to having a B/C average the rest of high school. I went to a Tech and took Business so every other week was in front of a computer all week. The school had florescent lighting which also aggravated me. The only advantage was the school had air conditioning which heat and humidity drives my headaches and triggers migraines.

Over the years the headaches and migraines became more frequent. By 2009 I had daily headaches for about 2 years prior and finally saw a doctor about them. I got a migraine about once a month. They put me on a gluten free diet after several testings. Did a sleep study, CT scan, MRI, blood works, spinal tap, Celiac blood testing and endoscopy. All came back normal.

In August of 2010 I got a sever Migraine that threw me in the hospital for 3 weeks. I could not hold down any food or liquids. I got so dehydrated and my minerals dropped critically low. I had magnesium and potassium through my IV along with IV fluids. They started me on topamax...and were giving me 2 shots of imitrex daily along with dilaudid iv which brought pain to about 8/10. For three months I had this migraine. It finally broke mid November 2010. But my legs were numb from the waist down. They were doing all sorts of testing, repeating old tests too. They determined it was a side effect of the topamax and weaned me off, as I was weaned off the feeling was coming back slowly till I was off the medication for about 2 months.

Now to this day 2012, I still have daily headaches. I wake up and go to bed with it. The pain varies. I get migraines 1-2 times a week. I am currently on Trileptal 600mg twice a day. I use the imitrex with migraines. Sometimes get relief, sometimes not. I do not use pain relievers on most occasions as do not want rebound effects. In July 2011 I was given 20 dilaudid. I still have 3 left so you get a idea of how often I use them. I take 1-2 at a time.

I also have many psych issues...PTSD, anxiety/panic, OCD, and also GI issues like you mentioned. I have IBS and several food sensitivities and gastroparesis.

I hope just hearing my story helps you knowing you have another person like you out there. I am 26 years old and am willing to talk further if you need an ear or anything. I also can relate to your frustrations. I hope you get some answers soon.
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