Any help would be appreciated

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bridmacg
New Member


Date Joined Aug 2015
Total Posts : 5
   Posted 8/30/2015 8:31 AM (GMT -6)   
Hi,

I’m posting here in the hope that someone will have experienced my condition and have some helpful advice. I was diagnosed with chronic migraine 2 years ago, having already battled it for 2 years. I have continuous light sensitivity to a varying degree each day. I haven’t been able to watch TV for 4 years since the flickering images cause me nausea and a fainting feeling. This year, to add to this, I’m very sound sensitive. This leaves me unable to leave my house very often or for very long. My neurologist has me on amitriptyline and magnesium and I have completed 2 rounds of botox, all to no avail. I have had neurological exams and MRI and CT scans that show nothing. I would very much appreciate any advice.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7321
   Posted 9/1/2015 10:25 AM (GMT -6)   
I would suggest going to a major hospital in your area or even traveling and seeing about getting an appointment with a neurologic diagnositic specialist.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

bridmacg
New Member


Date Joined Aug 2015
Total Posts : 5
   Posted 9/2/2015 4:07 AM (GMT -6)   
Thanks a lot for the reply BnotAfraid. i am currently seeing an neurologist at a large hospital and he's tried various medications but they don't seem to be working. i don't know what to do next, just hoping for extra advice on this board.

Merry
New Member


Date Joined Sep 2015
Total Posts : 1
   Posted 9/12/2015 8:25 PM (GMT -6)   
I just passed my 5 year anniversary with Daily Chronic Migraine.
I've been thru all the protocols with all the side effects and dismal results. I was on amiltriptylin for 3 years and propranolol for 5. Both have horrible side effects. And none of the migraine meds ever helped me.

I had some luck with the different types of botox. The first treatment worked fairly well but was much less effective on the second treatment and nothing on the third. There are 3 types of botox and we tried all of them. That's over 9000.00 just in the shots. Geez..

I had great control with the narcotic pain patch, Butrans, until the patches started excoriating my skin but it was wonderful for about 18 months. Kept me about a 3.

The last resort was the alzheimer med Namenda. I started that and at about the same time I went on the elimination diet, all whole organic unprocessed foods, nothing artificial. That was this past February. My pain level went from a pretty consistent 5/6 to 2/3. I'm not sure if it was the med or the change in diet that helped but I'm not about to stop either one. I also stopped chewing sugar free gum.

I've been totally sedentary the past 5 years because of the pounding headache that any exertion caused. All the florescent lights were removed from my office and my computer monitors almost at the lowest setting. Lucky to have a great boss.

I started playing pickle ball a couple weeks ago. Had to take lots of breaks and I wore my sunglasses in the gym while playing. Not that much fun, really hard to see the ball with sunglasses on.

Then I ordered some glasses from Theraspecs. Amazing. They are expensive but I swear by them after only a week of use. They come in indoor and outdoor
and several styles. I pretty much live in the outdoor pair. I wear the indoor pair to pickleball in the gym and it's amazing. They are made for the flickering of the lights and computer monitors so I'm sure they would help with the TV. Now I need to get my Dad and my son a pair. Both have light sensitivities.

I've since started fermenting vegetables and making my own water kefir. I'm now doing a primal/keto diet which consists of organic veggies out of my garden and organic, grass fed/finished beef, pastured eggs, poultry and pork, Kerry gold butter and cheese, nuts and seeds. I seldom eat out and feel awful when I do.

This is the best its been in over 5 years. I'm 57 now and actually finding some enjoyment in life. My depression has improved and I finally have a little energy. I've even lost some weight.

I had about given up on finding anything to help and my neurologist told me there wasn't really anything else to try. He even suggested medical marijuana.
I still have to work so that's not a viable option.

Keep plugging away and trying everything you can. Something will help if you just keep looking. I really recommend the glasses. There are at least 2 companies that make them.

Chin up!

Leda

bridmacg
New Member


Date Joined Aug 2015
Total Posts : 5
   Posted 9/15/2015 8:16 AM (GMT -6)   
Hi Merry, thanks for the reply. I’m so sorry to hear you had such a hard time, i’m glad you finally have some quality of life. I never heard of Butrans or Namenda so i’ll ask my neuro about them.

I tried the glasses a while back and they didn’t work for me unfortunately. My next step is to have some wisdom teeth taken out. They gave me some trouble years ago but settled down to just a constant background irritation then. I have a little bit of swelling and a feeling of pressure from my jaw up to my temple, with occasional pain. I really feel that must be contributing to my problems.

I’ll let you know how i get on, thanks again for the reply, i appreciate it.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7321
   Posted 9/16/2015 8:02 AM (GMT -6)   
OK, well, I suggest you tried to change eating habits. See the migriane diet link in our resource thread at the top of the forum.

Eliminate, red and yellow food dyes, artifical sweetners

I am on topomax 100mg am 125mg pm; propananol 120mg XR pm this keeps my pain level down to a 3-4 most days.

Yes, can only do about 1 hours of TV, crowds kill me, movies are out. I find bowse head phones help some times.

I take mag. and zinc for the buzzing and lound squeeling in my ears.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

bridmacg
New Member


Date Joined Aug 2015
Total Posts : 5
   Posted 9/18/2015 7:16 AM (GMT -6)   
Thanks Trina,

i will look at the diet link, i tried to identify triggers before but it made no difference but there may be better advice in the link. i take mag and zinc too but i'm not sure if it helps (afraid to stop and find out the hard way).

i hope you get relief soon, it's not great to be at 3-4 every day, even though i know it could be even worse for you.

SickOfBeingSick
New Member


Date Joined Sep 2015
Total Posts : 12
   Posted 9/18/2015 11:29 AM (GMT -6)   
Merry,
I saw that you said your neuro mentioned about trying medical marijuana but it wasn't an option. Have you tried marinol? It is synthetic THC in a capsule form. It is FDA approved so you should be able to get it in any state. My neuro is having me start to take it starting on nights and weekends to get used to the 'high feeling'. My biggest issue that I get with my migraines is nausea, dizziness and tunnel vision. My biggest trigger is being in the car and the projector during meetings at work. The nausea is pretty much daily while the dizziness and tunnel vision is not as often. I do sometimes get headaches that are rather painful, but not to the point of interrupting my life. She did say not to take it more than 2-3 times a week because it can cause rebound migraines.

Birdmacg,
What kind of tv is causing you issues? Dlp tvs and older lcd screens have always bothered me, even before I started having migraine issues. Back to what I said about the projectors at work, they are dlp business type projectors. I have an lcd one made for watching movies and it does not have the same effect on me. Due to how dlp works, I can see that as been a major problem for people who are sensitive to flicker.

Don't know if this info will be helpful but hopefully it is.

bridmacg
New Member


Date Joined Aug 2015
Total Posts : 5
   Posted 9/20/2015 3:02 AM (GMT -6)   
thanks for your reply SickOfBeingSick,

unfortunately all types of screens bother me, new, old, laptops, desktops, TVs etc. i'm glad you found something that works for you, i'll just keep trying things. i'm hoping the removal of my wisdom teeth will help.

SickOfBeingSick
New Member


Date Joined Sep 2015
Total Posts : 12
   Posted 9/21/2015 8:15 AM (GMT -6)   
I wasn't very clear in my post. The low quality lcd screens never gave me migraines. Only the dlp projectors at work do. The low quality lcd screens just hurt my eyes after prolonged use. I was just throwing the information out there about the lcd screen just in case one person eye strain might be another perssons migraine.

imorgan
New Member


Date Joined Oct 2015
Total Posts : 14
   Posted 10/7/2015 7:16 AM (GMT -6)   
Hi,

I'm so sorry to hear what you are going through. I am going through a similar situation. I was diagnosed with Chronic Migraine exactly 3 years ago. I am 26 years old now. I have not had one headache free day since I first started getting them back in October of 2012. I have a constant 24/7 headache that escalates into a full blown migraine at any second. I have tried every major medication they prescribe to people with migraines. Proponalol, Topamax, Amitryptaline, etc. I have tried Botox, nerve block injections, 5 day DHE hospitalization, nasal sprays, triptan injections, preventative meds, patches, Cefaly, acupuncture, physical therapy, chiro visits etc.

I am at my wits end. I regularly follow-up with Johns Hopkins Migraine Center in Baltimore, MD. They recently prescribed me Namenda. I have been on that for about a week now. I have not noticed any changes yet. I have also been on the Paleo diet for over a month as a form of food elimination diet, since I've tried other migraine diets before with no success. Johns Hopkins told me that Namenda is one of the "out of the box" meds to try since I have tried almost everything they normally give to migraine sufferers. I really hope that Namenda works. They suggested another med, another out of the box thinking pill, if Namenda doesnt work after 6 weeks. I guess we will see what happens. I'm glad to hear that Namenda worked for Merry (above). I'm sure they will be able to find something that works for you. Don't lose hope.

I wanted to reach out and let you know you are not alone. Hang in there and we will all find something that will work! :)
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