Silent migraines?

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SickOfBeingSick
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Date Joined Sep 2015
Total Posts : 12
   Posted 9/9/2015 12:20 PM (GMT -7)   
Hi, I am new to the forum and was wondering if anyone has had issues similiar to mine. I have been having major GI issues for almost 2 and a half years now. I went and saw a neurologist recently at the recommendation of my gastro because I occasionally (once every month or two) got migraines with a headache. They both seems to think that my issues are at least somewhat migraine related that I was mainly getting silent migraines.

As to my issues, I now have severe nausea pretty much everyday to the point where I am throwing up almost every morning. Being in the car makes the nausea 10 times worse. I also get dizzy, lightheaded, tunnel vision and my depth perception gets all funky when in the car and it gets bad. I also get the dizziness and weird vision with the sever nausea during long meetings at work when we are using the projector. Anti-nausea meds don't seem to be helping much anymore. I was on topamax for about two months but had to stop taking it because it started to give me severe nosebleeds. I had a bunch of other side effects from it too but I could tolerate those. I only had 1 headache while taking the topamax but had the worst headaches everyday for the first week or so i stopped taking it. I took zonisamide for 2 weeks but it made the nausea and vomitting so bad I lost 10 lbs in those two weeks and could not function. about an hour after I took it, my stomach would be churning enough to wake me out of a dead sleep and I am a heavy sleeper. My neuro said that it seems like I don't tolerate that class of drugs so I am starting on propranolol (fingers crossed). Anyone have an experiences similiar to mine?

BnotAfraid
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Date Joined Apr 2012
Total Posts : 7280
   Posted 9/12/2015 7:02 PM (GMT -7)   
Not as severe.

I had my eyes checked and did need a new script. Propranolal works for me, taking 120 mg xr at bedtime. also taking topomax twice a day 100mg each.

flourensent lights can worsen the condition. Dehydration and too much caffeine.

So I would drink more water if you don't, cut out soda and coffee if you do.

Peace and strength
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;

SickOfBeingSick
New Member


Date Joined Sep 2015
Total Posts : 12
   Posted 9/13/2015 2:54 PM (GMT -7)   
I do not wear glasses and do not have any vision issues except for when I am having an attack. Florescent lights have always bothered me even before I had problems. The glare from the brighter ones i always found irritating. At work I wear indoor/outdoor safety glasses that have a light tint which helps with that.

I always do drink a lot of water to make sure I don't get dehydrated due to the severe nausea and vomitting I get. I also do limit caffeine. I drink some soda in the morning to help wake me up. I take promethazine (phenegran) for the nausea and it makes me very tired. I would not be able to stay awake if I didn't have some caffeine in the morning because of it. That is the only caffeine I drink though.

BnotAfraid
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Date Joined Apr 2012
Total Posts : 7280
   Posted 9/14/2015 7:43 AM (GMT -7)   
Well you can ask your doc about topomax.

I also meditate and do mindfulness for chronic pain. I find amazingly that it helps reduce the daily pain and nausea. You can learn quickly and even do a min or two in the ladies room at work.
It is not the religious kind of meditation.

I have given you a link to check out both coping skills. It took me about a week to get into the grove with this, but I like it and it work. Very calming.

www.mindful.org/?s=meditation+for+chronic+pain

Peace and strength
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;

SickOfBeingSick
New Member


Date Joined Sep 2015
Total Posts : 12
   Posted 9/14/2015 9:13 AM (GMT -7)   
I am male so using the ladies room will probably frowned upon lol. Topamax was actually the first medication my neuro tried and I started getting severe nosebleeds from it after taking it for a month and a half unfortunantly. I stopped getting them when I stopped the topamax. She told me that bleeding issues is a very uncommon reaction to topamax but it can happen.

I will look into/try the meditation to see if it helps with the nausea. Thank you for providing the link. I only get a headache occasionally (except when I stopped the topamax and to a much lesser extent when i stopped the zonisamide). The headache part, while very unpleasant and very painful, does not stop me from functioning. I would take the worst migraine headache I have ever had everyday over all of the other symptoms I get. It is the non stop nausea, vommiting, vertigo and weird vision changes that are incapacitating me for weeks on end. If I make it to work without having to pull over to the side of the road I am usually fine the rest of the day.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7280
   Posted 9/14/2015 11:02 AM (GMT -7)   
ooops male, that is too funny!

I just had a thought, treating the symptoms of motion sickness. Have you tried seabands, the things people put on their wrists when boating?

Or dramamine [sp?]

maybe even talk to your pharmacist, sometimes they know a little bit more about meds and side effects that the docs, because people complain on and on at the counters.

Hope this helps.
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;

SickOfBeingSick
New Member


Date Joined Sep 2015
Total Posts : 12
   Posted 9/14/2015 11:44 AM (GMT -7)   
I actually wore sea bands for about a year and a half. They made my arms fall asleep and didn't seem to help but I wore them anyway because I figured what could it hurt. When I first saw my neurologist, she saw I was wearing them and she told me to be careful because they can irritate the nerve over time which is apparently why my arms kept falling asleep.

I did try dramamine and it knocked me out if I took it and the promethazine. I also tried benedryl on the advice from my gastro (apparently it also works for motion sickness) and it did the same thing if I took it at the same time as the promethazine. The promethazine worked better than either of them so I stuck with that.

I have tried talking to the pharmacist at two different pharmacies and they were not that helpful besides more or less reading the paper work they gave me.

I listed the various meds I have been on so far. I am currently only on the propranolol and the promethazine.

Anti nausea/ gi meds meds
Zofran - doesn't help
Promethazine - helps but isn't quite enough
Domperidone - doesn't help
Reglan - doesn't help
Compazine - helped a lot but gave me painful muscle spasms in face after a few days
Notriptyline (sp?) - made me so dizzy I couldn't walk straight
Hyosciamine -gave me an erratic pulse and very dizzy
Marinol- helped the nausea a little and my appetite a lot but made me completely out of it so my gastro had me try something else
Ginger pills- didn't help
Ginger chews and tea- just gave me heartburn
Ginger gum - doesn't help but tastes good so I still chew it

Migraine meds
Topamax - didn't help the frequency but did help the severity and duration but gave severe nosebleeds
Zonisamide - made me ungodly sick to my stomach
Propranolol - only taken it for a few days now. Haven't noticed any side effects but hasn't really helped yet but I am on low dose and was told it takes a few weeks before it is effective.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7280
   Posted 9/14/2015 3:27 PM (GMT -7)   
True on the propranolol.

The only other thing I can think of for your dizzy and nausea is weed. Are you in a state where you can get medical pot?

Perhaps you are at a job were you don't get tested randomly....

This decision is tough if you are not in a willing State.

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;

SickOfBeingSick
New Member


Date Joined Sep 2015
Total Posts : 12
   Posted 9/15/2015 5:21 AM (GMT -7)   
We actually do have medical marijuana. They just opened the first compassion center recently. My gastro had actually asked me of I tried smoking MJ and if it had helped but I have not. The company I work for has told us that even if it is legal you will still be fired because of company policy coming from corporate. Our us headquarters are not in a medical marujuana friendly state. The have never tested me except for the pre employment test though. It is also something I could not use before going to work. I work in a manufacturing plant and being in an altered state around machinery becomes a safety issue. It might help for nights, weekends and days I am not making it into work anyway though.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7280
   Posted 9/16/2015 7:09 AM (GMT -7)   
I wonder if it is worth the time to talk to a HR lawyer about it. I understand the safety issue completely:

from what I under stand it only takes, about 5 hits for it to work. You do not have to smoke a whole joint.

There is also a capsule form, don't know if it works as well.

I don't suggest it, however there is the choice of finding another job. This depends of all your dynamics. Pros and Cons list area I would think, so you can see if it is something to consider.

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;

SickOfBeingSick
New Member


Date Joined Sep 2015
Total Posts : 12
   Posted 9/17/2015 1:22 PM (GMT -7)   
I have been messaging back and forth with my neuro today and she is trying me on marinol again in combination with the phenegran to hopefully tide me over until the propranolol hopefully starts working. I am going to only take it on nights and weekends until I (hopefully) get enough of a tolerance to it that I am not out of it from taking it. One thing I thought was interesting was that she specifically told me not to take it more than 2 or 3 days a week or it can cause rebound migraines. That might be usefully info for people who try to use marinol or MJ to treat their migraines or symptoms.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7280
   Posted 9/17/2015 2:47 PM (GMT -7)   
I have heard of this before. Migraine meds can cause more pain, ironic.
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;

SickOfBeingSick
New Member


Date Joined Sep 2015
Total Posts : 12
   Posted 9/17/2015 3:40 PM (GMT -7)   
Sorry if this ends up being a double post. I got an error when I tried to reply.

I had heard of rebounds from opioids and triptans, but not from THC based medications. I just find it curious I had not seen that on all of the various boards and posts I have read when using MJ has been brought up in regards to migraines.
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