what a joke

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Wed, August 12, 2009

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well iwent yesterday for my MRI and neurologist appt.

as expected the MRI was normal.......... but the neurologist who i thought might actually help me turned out to be a joke.

he had a med student with him, and she was 10 times worse than he ever dard to be. he told her i had no known triggers... WHAT??? dude i told you at the frist appointment of at least 25. and those were just the ones i knew off the top of my head. i've done the elemination diet...... still in agony. keep taking you little preventative pills that are taking what little life i have left. and all he wants to do is up the dosages. just because aamatriptyline worked for 7 years 11 years ago doesn't mean that it will work now. and i've been on topamax for over 2 years now with NO relief!

i refuse to go back, and told my husband as much on the way home. hubby's response..... there is nothing wrong with you. my jaw nearly hit the floor.

so since my job could care less... and obviously my husband could care less, i have come to the conclusion that there isn't much point in fighting it anymore. i'll keep swallowing these pills, and drag to work no matter how sick i am. and then when something gets messed up.... well just fire me! as according to everyone around me it's all in my head!

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Headacut

8/12/09 2:37pm

Read your post and cryed. Just wanted to strangle your doctor, employer, and especially your husband right then and there. Breathe Breathe. Then I started thinking straight again and started remembering how it was for my husband and I recently when we went for my second MRI in two years and found out I'm just fine and dandy. My husband was very happy to find out I didn't have a life threatening brain tumor or aneurysm and so he was glad "I was okay." Meaning I wasn't on the brink of death in the near future. Everything is relative. Perhaps this is what your husband was trying to say? If not let me know I send goons over as soon as possible to straighten him out. So as far as you doctor visit is concern Been there done that. Looking for that neurologist once again who won't treat me as another cog in the system. Hard to do with the great new insurance company my husband is now on. Luckily my husband is our sole provider. I'm 46 and just around your age I had to throw in the towel in working. Back then there wasn't this site to help you with standing up for rights at work (I don't think migraines were even recognized as a disability anyway back then). So I can't help you with the ins and outs as others can. But I hope you hold head high knowing you are not only fighting for yourself but for all who suffer as you do and hope you remain strong for your children. I know its so hard to be strong when we are so worn out from being sick but know there are many who are rooting for you. Sending you love and the best in wishes Headacut

mcmurraychick

8/12/09 5:17pm

well at least with work.... our HR manager called me this afternoon ( she was out of the office until today). she was real quick to get on the phone and have our manager set up a meeting with me to get me moved to first shift. and is having me redo my FMLA paperwork. i am to call her the day i turn it in, and she will have my write up removed.

she also asked for more information on migraines ( i think my printer is still smoking i worked it so hard) so that we can edcucate the rest of our district. yay!!!

now if someone will teach my husband that i'm not faking it. i'm really in pain. and get that nasty ER doc while you're at it!

anna

8/13/09 12:25pm

I know how you feel,i$ about to lose my job myself and have spent my summer in bed with ice on my head. My neuro keeps sending me in for steroids infusions that do not work and upping my meds and it does not work. Told me yesterday my MRI was normal while I sobbed in his office and asked me to now try Neurontin,like I'm not "retarde" enoigh! I told him I probably will get fired and he said my job was too stressful for me(I work in the mental health fleld).I asked him if he would pay my bills. I'm not sure what to do anymore. I'm tired of my family and friends telling me it is stress when I'm in bed all day! It is not...people who have not experienced migraines have no rights to give advice,they crate stress. I wish I had more wisdom words but I'm so frustrated too and I worry for my kids to see me like this. Good luck- I undersatand your pain. Anna

8/13/09 1:22pm

At least we can feel some comfort from eachother, but I guess that's what this is all about. I have taken my Imitrex, with a naproxen added for good measure 5 times in the past 4 days. I feel as though I've been run over by a truck. Hang in there. I wish we could all meet and talk in person. -LC

lddbroussard

8/13/09 4:50pm

I know exactly how you feel about your doctor. I brought my 13 year old daughter to what was suppose to be the best in our area. Not only does she have the worst migraines I have ever seen, she is also losing sight in one eye because of this. The doctor actually told me that the MRI came out fine so not to even worry about the eye. I am going from doctor to doctor until I find out what is making her migraines so bad and why she is losing her eye sight. I will not stop until I find out. Also when the doctor said this, my husband her father said it was just all in her head.

headachelady

8/13/09 5:32pm

Hi. I can feel your pain as I read your frustration about your daughter's treatment (or lack thereof). I also have vision problems due to migrianes. Has your daughter been to see a neuro-ophthamologist? That is the best kind of eye doctor to see. They specialize is eye problems that are associated with neurological disorders. I don't know if you have one in your area or not. Most cities that have a teaching hospital with an opthamology dept. usually have a couple on staff. I live in PA and have gone to one at UPMC Eye and Ear Institute in Pittsburgh and they also have some at the Cleveland Clinic where I went to a new headache specialist yesterday. I am not losing any vision, but have constant aura. The doc said that it is from poorly controlled migraines. I pray that you and your daughter find a doc that can really help you and that you find the right eye doc because it is really important (as I know you know) and is really scary when you are dealing with vision problems.

Nancy Harris Bonk

10/20/09 2:59pm

Hi,

I hope by this time you have some answers for your daughter. But if not, please consider seeing a Migraine specialist. If your doctor isn't able to help you, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

Has your daughter had her eyes examined by an eye doctor (ophthalmologist) lately? This is medical doctor who specializes in eye diseases. There is also a condition called Idiopathic Intracranial Hypertension (IIH) formerly known as Pseudotumor Cerebri or PTC where vision loss is a potenial symptom in addition to intractable headache. For more information on this continue reading this article: Pseudotumor Cerebri (IIH) - The Basics. It is very important to note you do not have to have papilledema to have IIH.

Let me know how your daughter makes out, ok?

Nancy

lddbroussard

10/20/09 3:25pm

My daughter has another visit with her doctor that specializes in comprehensive ophthalmology. She wants to see her every 6 months to see how her sight is doing. We have never found anything wrong with her. Her doctor that she sees tomorrow thinks that she just had a really bad migraine that took some of her sight. She said since she is 13 she might have a chance of restoring her sight. W ehave went to 2 different eye specialist, neurologist, and even a heart doctor. I won't give up until I find out something. Thanks for the comment, I will speak to the doctor tomorrow about this. Also, thanks for caring.

headachelady

8/13/09 5:23pm

Hi! I understand how you feel. I have been treating with a headache specialist for 2 1/2 years and the migraines have been getting progressively worse. So finally I made an appt. at the Cleveland Clininc in their Headache Clinic. I went there yesterday. I am so glad I did. My other doc said I could take ibuprofen 3X a week - new doc said that caused MOH. I have been on .5mg of Klonopin for anxiety for a few years - new doc said it has to go b/c can cause rebound. I am on Invega for psych. issues and she isn't sure about causing headaches, but she said that will definitely cause weight gain so it has to go. Am on Zoloft and Effexor XR. Said the Zoloft is controversial about causing HA but she said it has to go. She said the Effexor is a really good option. No more ibuprofen for me. Other doc used Benadryl to help when have one - no more of that. Vistaril to sleep - no more of that! I am only allowed to take 1 pill of Zanaflex 2X a week (was taking 2pills every day). She added Verapamil, Magnesium. I am also on Namenda as a preventative. Has worked before so am on increased dose. She also added high dose prednisone for 6 days to break migraine cycle of 2.5 weeks. I would recommend going there if you are able and if your insurance would pay for it. I did not know that many of my drugs that my other headache specialist put me on could cause MOH. I am so glad that I went there. I know that it may take some time for this new plan to work, but at this time I am willing to try anything. Good luck - I pray that you find relief and someone that can help you!

Mercury

8/13/09 8:00pm

Don't give up! I know, you've probably heard that 1,001 times. Not to get into relationship business, but, my ex used to tell me the same thing. My husband now has been a godsend. He took me to every type of doctor he could find that might be able to help. Have you ever gone to the ER with one of the headaches? If not, do that next time, tell them what you've been taking and all you have been through. Have you had your hormone levels checked? My current doctor didn't even know hormones could bring on migraines (!) and, voila, that was my issue.

Feel free to respond. I'm sending healing vibes!

~Mercury

mcmurraychick

8/14/09 9:19am

i'm on a first name basis with the entire ER staff.

one of the docs ther actually flat out told me to get a divorce alredy. marital problems were causing my migraines. i was like i have the most loving and supportive husband and i damn sure aint having no marital problems.

and went back the next day with information for him to read ( he was much nicer the nex time i saw him)

Mercury

8/14/09 9:40am

Oh, my. I really wish I had a solution for you. I know how difficult it is to find people that believe you and will help you. I started having migraines when I was 9 years old! That was back in the early 70's before they really understood a lot of things about women, migraines, and depression. It took 30 years (and 3 husbands) before I got real relief.

The only other advice I can offer is that I heard there will be a new drug - similiar to Imitrex - available in a non-needle injection form for people who have severe migraines. I'm going to ask my doc about it - I hate needles! Have you tried injections?

Again, you have my sympathy, empathy, and support!

~Mercury

clarinda

8/14/09 8:36pm

Hi Mercury

Its so sad reading what so many of us go through.

I noticed you mentioned Hormonal migraines, I also have Hormonal migraines what has helped you?

Mercury

8/15/09 4:10pm

Hello Clarinda,

The biggest help was keeping a calendar/journal of my headaches, period flow, and any other PMS symptoms. The second was to keep "comfort foods" on hand. The third was to eat a lot of salads the "week before". Fourth, being very persistent about the right meds. And, the most important, educating my family.

The calendar journal was easy. I just got a cheap pocket calendar and write down everything about my cycle, in shorthand - H for headache and then a number from 1 to 10 for the severity of the headache; P is for period and the same 1 - 10 for how heavy.

The comfort foods - although not the best for weight concious people - are a great help for those days when the headache is so bad, only a bowl of oatmeal with brown sugar or a snickerdoodle cookie will ease my tummy. I do my best to only have those in the house when I know I'll need them!

The salad eating isn't difficult and it helps me feel lighter in the body. Which is a benefit to me if I have to lay down with an H9

As for the medication, I was adamant with my first doctor about what didn't work. Needless to say, he didn't think it was all that bad and I could survive with a slight headache a few days a month. After my trip to the ER, I got a new doc fast and we went over my symptoms and the available drugs. Unfortunately, I can't use nasal sprays and my stomach is usually so upset, I can't swallow pills. The Imitrex injections are a godsend! My doc even fought with my insurance company to make sure I'd have enough for each month (they only agreed on 4 shots when I sometimes use 8).

Lastly, I got all the information together I could for my family about migraines. I also gave them fair warning if I knew I'd be down with one and not to disturb me. It took a couple of months, but now they are kind and helpful.

Hope that very long comment helps! Please write anytime!

~Mercury

clarinda

8/15/09 7:11pm

Thanks for that Mercury!

I appreciate you giving me your time.

Ill start doing the things you suggest straight away.

Interestingly enough I also have trouble with tablets as my stomach prefers to bring them back up again

But I have found that I have very bad sinus just before my migraine day so the nasal spray may help with that

Eating salads was something Id not expected what is the reason for that?

And as many people are saying finding a good Dr is so difficult. I went to my Dr recently for migraine again and he said "so what makes you think its migraine?" After 7 years of seeing him for pretty much only migraines, I was very upset with him, and havent been back.

Im thinking I may be in the very early stages of menopause as my body rythmn is changing Im hoping that maybe one day I wont have them anymore! ( Dreaming??)

As my migraines started with my menstrual cycle maybe they might end with them too.

Anyway thanks again for your info!

Cheers Clarinda

Deborah R. Molchan

8/13/09 9:24pm

Hi. Don't give up. there is hope for you. After suffering with migraines for 16 years, & a recent scare with a brain aneurysm I to found myself back to a neurologist with nothing to offer. Then the neurosurgeon suggested a Headache Clinic with specialists dealing only with headache related diseases. I to am on Topamax. My husband found a nasal spray called sinus buster with the natural substance feverfew/capsicum/peppermint/euccalyptol that i've been using twice a day, one spray in each nostril that has decreased the amt and severity of my migraines.

Mandy from Aus

8/17/09 3:03am

i do feel for you but i can feel your determination in your writing, your a strong person and don't let those so called specialists bring you down, we all have had Dr's telling us that it is in our head and that our jobs are too stressful and that its not that bad ???????? I would like to give these specilist one day in our shoes and see how they fair.

I myself have a very supportive husband who knows i have migrains, i have Hemiplegic migraines that leave me totally debilitated and unable to speak, its like a non-degenerative stroke. and i have trialed atleast 40 different meds over the years with no relief, it is hard and i have lost my job and have had to change local Dr as she believed that i had become an addict to pain meds, (da i have migraines to which she has no other solution of course im taking pain meds) so she flat out refussed to treat me,

i have found a great Dr now who has dealt with migrains and he has been very honest, he said not to go to these 'new' Drs as they are sent out of uni with the belief that migraine sufferers are habitual drug abusers, he said to see an older Dr who has seen it all and dealt with all the meds out there and they are alot more empathetic and understanding.

But on the other habd the younger Neuro's are hungrier for challenges so they are more likely to help. It is a vicious cycle that we are all on and in Australia there is NO migraine clinics or real specialists unless there is a trigger they can see (neck, back probs etc) they are too scared to want to help.

Here is hoping for a change in the medical industry that might give us a fighting chance.....

lynn

9/12/09 11:34am

My God! There are so many of us with the same story!! You'd think the medical community would get a freaking clue!! If at all possible, find a different neurologist - you shouldn't have to put up with his lack of understanding. I also had issue on the job, and at 45 year of age, could no longer work(that was 10 years ago). Still have 2-3 migraines/week with no end in sight. Thankfully, now I have a decent neuro doc and a wonderful, understanding husband (ditched the last one, he had NO understanding or sympathy). I am SO hoping your situation improves - don't give up!!

what a joke

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