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chronic daily migraine & visual distrubance, finding daily life a struggle, please help

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Migraine Headache
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Posted 6/12/2012 11:56 AM (GMT 0)
Triptsans made my migraines worse, never tried botox yet. I have gel freezer packs and put one behind my neck and one on my forehead along with a frozen eyepack, all can be bought at the dollar tree. The dollar tree also carries a generic of Excerdren Miagraine. Black all light from one room completely, I used walmart postersize foam board. THe only migraine RX that works for me is Maxalt. And always wear sunglasses. I buy 400 protection in clear or lighter colors to wear inside and driving at night, flouresence store lights trigger them along with many other things. I suffered many years and feel your pain. I really hope you get so relief soon because it does cause severe depression from my experience. Good luck.
Posted 6/12/2012 12:00 PM (GMT 0)
TENS units for siatic nerve can refer the pain to your brain as well.  Some doctors will loan you one to see if it eases the pain.  It could also be a pinched nerve, have you seeked help from a chiropractor?
Posted 6/13/2012 9:24 AM (GMT 0)
Hi there, thanks for posting, i am reading what you have said, im just really really suffering past 3 weeks and the comp is just awful to look at, therefore havent replied. Thanks again for posting.
x
Posted 6/14/2012 9:00 PM (GMT 0)
I have a similar condition as you, just no where near as bad. I have continuous migranous headaches with visual disturbances, three migraines caused Transient Ischemic Attacks.

I have been given Sumatriptan which prevents the extremely bad migraines which cause the strokes.
Tried

Nortriptyline - Tried it on a low dose and then on recommendation changed to topiramate
Topiramate – I agree, worst tablets ever, lost motor control in my legs, lost some hair and extremely tired :(
Sumatriptan - Hate this, but it stops the very bad attacks
Propanolol - I have a faulty valve on my heart so this is to keep my heart rate down, plus its meant to help with headaches.

Im currently on 80mg propanolol, and 75mg nortriptyline. I still have constant headaches but they are no where near as bad. I have been told by the neurologist the migraines are as good as they are going to get and will never go away....what a help he was.

Doing some self diagnosis here, do you have or ever had cravings for salt? I find salty foods help my headaches.
Posted 7/30/2012 10:56 AM (GMT 0)
I suffer from chronic rare migraines which took over my life, I met with a top specialist on migraines and he prescribed me drugs that are different to what you guys mention. It has taken two years and I still suffer with the visual disturbances and mild vertigo etc etc but I have my lifeback. I take amitriptyline, lyrica and clonazepam. They work for me! Ask your doctor or neuro about them. Lyrica is a new drug and it doesn't seem to be used much with migraines but I have found it good. My dosages of these drugs were built up over a very very slow time so my side effects are not too bad!
Posted 8/7/2012 4:26 PM (GMT 0)
You are definitely not alone, i am 57 and have had silent migraines for 8 years and migraine with aura from age 11. I am now going through my worst ever attack ,in my 4th week and have extra bonus symptoms of aching joints and heavy arm on one side, although it alternates throughout the day, i am getting so fed up of it all and cant seem to get the right medication. i have just started taking Gabapentin from yesterday, not noticed anything yet but i am hoping it doesn't go on for much longer it is really getting me down. Does anyone else have aching muscles and joints with migraine?? it lasts the same length of time as the parethesia and alternates with it too so i know it is migraine related. When will it stop !!!
Posted 8/9/2012 4:17 AM (GMT 0)
I've had severe migraines for years, but over the past months I've suffered a headache almost every day. I'm considering asking my neurologist for a prophylactic medication but in the meantime, I do get relief from Amerge (naratriptan). Eventually the migraine returns, but it's worth it to be headache-free for most of the day, once the Amerge kicks in.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000077/

None of the other triptans worked for me.
Posted 8/16/2012 1:58 PM (GMT 0)
My Lovely,

I have been dealing with increasing migraine issues for the last 8 years. I have been recently up to 26-29 days of pain in a month (not nearly as bad as you but I can understand the frustration). In the beginning I was determined that the migraines were not going to stop me from going to work. I was on Topamox (bad spelling there) for about 4 months and was nearly rushed to the hospital by the on-site medical staff due to my reaction. After that I have been told not to come into work when I'm not doing good. I also decided it was time to try a different drug. I still force myself in on days were I can move, wearing sunglasses inside and spending half the day listening to people telling me to go home. Guess if you leave a lasting impression like that, people suddenly understand. I'm actually on sick leave right now for migraines and other issues.
Why I'm responding is that I have started with botox injections. I have just recently had my second round of injections. The first round helped with the migraines days for the 1-4 pain levels. The neurologist increased the number of injection sites this time and it seems to be helping with the 5-7 pain level migraines. I have to go every 3 months for the injections and we have been increasing the dosage as we go. It is very important to pinpoint areas of the head where the pains seems to radiate from as the doctor can adjust the injection sites to concentrate the effectiveness of the botox (there are some standards areas that have to be done, but there is some play for customization) Any little bit that helps is a mile marker. It took me 3 neurologist to find one that would actually listen and make me feel liked his even cared that I was in pain. (I have been fighting with the idea that he is a little sadistic as he doesn't want me to take any rescue or abortive medication as he is worried that some of the migraines are actually rebound headache). I do feel more motivated and hopeful because he listens. If your doc isn't listening can you try to find another one? Just the little thing, like knowing he is listening, makes such a huge difference.
Posted 8/20/2012 1:51 PM (GMT 0)
lab01343

Hi, we sound very similar, its now been 6 ish months since i posted this topic. I now have the most amazing consultant, he is brilliant, knows everything, is the top of the top in London. I feel more knowledgeable, wiser and i am starting to understand this illness more and more. It doesn’t get any easier to understand why this is happening to me, and coming to terms with it is horrendous, i feel like i have lost myself, the me i was has gone! Very sad.

But i have just had my 2nd Botox treatment, like you say, this has to be topped up every 3 months. for once in the 2 years+ i feel like i have something positive to concentrate on, something that is helping me. My migraines went from 2-3 a day, down to 1 a day, which is absolutely amazing, obs still bloody awful, but any tiny progress is amazing progress, after having no success all this time.

Im also now being diagnosed with chronic fatigue, basically if i do something, it takes me anything from 1-7days to re coop. My body can’t cope with doing anything.

Im on no tabs, and thats brilliant! no horrible side effect. The botox gave me a extremely stiff sore neck and it hurt my jaw to chew, but apparently only 6% get this, typical i do!

Now that im seeing positive results with the botox and my head pain, im still having majorly bad issues with my vision! Constant, all day every day which is getting harder and harded to deal with.

I have started swimming twice a week, my partner has to take me as still hard to drive, but for some odd reason this helps me loads! as soon as im in the water it relieves head and vision.
Posted 8/22/2012 12:55 AM (GMT 0)
Hi My Lovely,

I have found that water does help a lot. I lot to take baths with the lights off when I start to feel dizzy or when my pixel-like vision starts. I find it helps a lot. With the jaw thing, have you tried putting pressure for 30 seconds or so on the tendon. I have some TMJ and the Chiro does this painful thing (and I something do it to0) where the tendon for the jaw is probed until you find the tender spot. You then push on this spot for about 30 seconds a couple of times and it is almost like untying a knot. The tendon looses up and there is pain relief.

Glad to hear you are getting better. The best thing I have ever done for my migraines was to find this site and found out I'm not alone. I also realized that I have been having migraines longer then I thought when I started reading some of my other issues on the board. It's weird what our bodies can put us through.

Take care.
Posted 8/29/2012 3:16 PM (GMT 0)
Hi I suffered from headaches and dizziness all my life. 5 years ago I discovered that I was Salicylate Intolerant, allergic to aspirin and all foods containing salicylates. Aspirin is a salicylate that comes form the bark of the willow tree. All plants produce salicylates as a natural insecticide. It is in things likes fruit,most vegetables, tomato sauce, olive oil and many more. Theres a good list of foods in the book,"Salicylate Intolerance and The Healthier I Ate the Sicker I Got."

Right before I hit bottom I had such a pain in my right eye that I went for a CAT scan to rule out a tumor. Once I went on a low sal diet I got rid of my headaches,dizziness, nausea, neck pain, arthritis, asthma, dry eyes, nosebleeds and a foggy headed feeling.
Check out sickfromsalicylates.com
Also people who are Salicylate Intolerant usually react to artificial colors which are made of petroleum or coal tar. This can trigger headaches.( check out Feingold.org)
No one should just accept a diagnosis of Cluster Headaches when they can prevent them by finding out whats causing them. Its usually a food intolerance. Unfortunately there is no test for Salicylate Intolerance because it isnt an allergy. You have to go off the foods that are high and very high in sals and see how you feel. Good luck, Joan
Posted 2/3/2013 9:34 PM (GMT 0)
Hi My Lovely,

Sorry to hear you are having such a rough time. I had a continuous migraine aura affecting my vision for 3 years. I don't know what triggered it, but I noticed over time that my diet was the best way to manage it. I tried an elimination diet. I cut out 7 common allergens from my diet (Milk, Egg, Wheat, Tomato, Beef, Corn, Soy) and got much better. I now eat mainly rice, vegetables, and fish and have almost no migraines and the aura is manageable.

A study on chronic migraines in children showed that 93% of patients could stop their frequent severe migraines on an oligoantigenic diet (see first reference). In the study, the patients ate only 4 foods (ex: rice, lamb, apples, and brassica) for a week. If that helped reduce their migraines, they added foods back once a week until their diet was nutritious and socially acceptable. It might be worth a try. There is growing evidence that migraines are an allergic disease.


Best,
Steven

References:

Egger, J., et al. "Is migraine food allergy?: a double-blind controlled trial of oligoantigenic diet treatment." The Lancet (1983): 865-869.

Mansfield, Lyndon E., et al. "Food allergy and adult migraine: double-blind and mediator confirmation of an allergic etiology." Annals of allergy (1985): 126.

Monro, Jean, Claudio Carini, and Jonathan Brostoff. "Migraine is a food-allergic disease." The Lancet (1984): 719-721.
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