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Rachel

Migraines

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I've been having a lot of migraines lately and am trying to figure out what might provide some better relief. The migraines come back to back; it's hard to tell where one starts and the other one stops. As long as I'm in a quiet environment and don't push myself too hard, then the migraines typically stay on the mild side of things. The pain I have with migraines is fairly minimal. Sensory overload and fatigue are my worst migraine symptoms.

I have looked into dietary triggers, but can't find anything there that is causing my migraines to flare up. The only triggers I have found are being in noisy environments or pushing my body too hard physically.

I had only 4 days without migraines from the middle of December until the beginning of March. And then I was mostly migraine free until the end of summer. Since the end of August I have been having daily migraines again.

A few years ago when my migraines were especially bad, I tried various migraine meds. Amitriptyline was the one that ended up helping. My neurologist said that amitriptyline is the one that is typically the most helpful with the type of migraines I have. The problem is that it interfered with my sleep. So in the spring of 2012 I weaned off of the med. My migraines weren't so bad at that point, and I really needed better quality sleep.

I'm willing to go back on the migraine med if I need to, but would like to avoid it for as long as I can due to my need for sleep!

I take magnesium supplements daily. Magnesium was recommended by my doctor years ago, and it does lessen my migraine and headache symptoms. A cup of tea or coffee at the onset of a migraine is helpful. I'm also trying vitamin B5 because it sometimes helps with migraines. Tylenol and ibuprofen are the only pain medications I'm taking currently.

Is there anything that has helped you with migraines? A migraine trigger I might not have considered? If you have any suggestions for something to look into, please let me know!

Thanks,
Rachel

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Sarah knows a lot about migraines (I'm sorry to say).

I take nadolol, eat gluten free, and take kariva (generic mircette) continually. I no longer take migraine meds. My migraines are very infrequent now. I also don't have auras- although it used to sound like my ears were muffles and I'd have lighting zigzags in my vision or lose my sight temporarily.

I'm so sorry that you deal with migraines. They are horrible and draining. Many times I found myself explaining to my children " I am irritable... It's not you". Even happy noise can be too much!

I know most of us hate the idea of more medication... But can you possibly take a sleep aid and the migraine medication? It's not for migraines but I have been taking provigil for about 6 months. I take Ambien at night.

It's not ideal to take multiple medications but pain/no sleep is a vicious circle.

I hope that you find something that helps- or that they just stop.

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Guest Alex

Rachel,

sorry to hear about your migraines. I was about to suggest Sarah as an expert on this, buy KJay was faster than me :)

Here are some articles that may be of interest for you

http://www.examiner.com/article/migraine-sufferers-respond-to-folate-b6-and-b12-supplementation

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3710947/

http://www.scielo.br/pdf/anp/v66n1/18.pdf

I hope you find some relief soon.

Alex

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I am struggling with finding a trigger and a remedy as well. I have tried the herb feverfew and magnesium and no ill effects from either and thought they lessened the severity but not frequency. Now I am not so sure. Have read 400 mg b2 can help, as can 300 mg cq10. I was taking 100 a day and saw no benefit but never got up to 300.

I have read that salt can be a trigger or too little can be a trigger...so can't figure that one one.

I tried Pamelor which is similar to elavil but not as sedating according to my neuro. I really couldn't tolerate it. My neuro says that SSRIS or SSNI/s can often help as a migraine preventative and they are easier to tolerate (in her opinion) than the tricylics.

Just some info..you probably know it all but I do know how frustrating it is. Migraines are my worst symptom these days.

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Hi Rachel,

Sorry to hear about your migraines :( I've had them for almost 8 years, but the last 2-3 years have been horrible. Like you, I am also unable to tell when a new migraine begins and one ends.. the only clue I have are when the aura's kick in. Slurred speech, hearing loss, blurred vision, numbness.. The nausea and vomiting lasts forever it feels like sometimes. Do you have aura's with your migraines at all?

The longest migraine I've had is for 28 days but am very rarely pain free. Maybe 2 or 3 days out of the month..I know exactly what your going through.

I have seen a lot of neurologists and the treatments are basically classic. It sounds kind of like you should take a look at Chronic Migraine. The treatment for that is basically a preventative: Topamax, Depakote, Amitriptaline, Propanolol, Verapamil (the last two might get tricky if your have lower bp's), Abortive: Imitrex, Maxalt, Relpax (which can be tricky if you have high pressures like me), and Rescue: Pain Relievers. Also, Botox has just been approved for the treatment of chronic migraine. I co-run a migraine support group here in Buffalo and there have been a great deal of people who have had a lot of benefit and reduction in the intensity's and frequency's of their migraines. Also, trigger point injections and nerve blocks are available for pain control but they hurt worse than the migraine sometimes

If you are looking for other options than medication interventions, I also receive chiropractic adjustments twice a week. I haven't noticed much of a difference though. However, there are a ton of people who have had success with this. I mentioned a post I started about chiropractic treatments a while back, I often wonder if the migraines are a secondary diagnosis to the POTS.. it really doesn't change much though. KJay covered this part in her post so I'm sorry for repeating, I also have difficulty with identifying my triggers. I have an extremely poor sleep schedule so I know that must contribute..other than that, I keep my journals and diaries and nobody can come up with an answer for me either.

This might sound random, but which helps you more -- ice or heat?

Good luck with everything. I hope you find some answers and relief soon.

Sarah

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I get migraines. Chronic Daily Migraines and every day I will experience migraine == breakthrough for an hour or so or anfor 3 days or more every 2 -3 weeks.

I'm floundering now when it comes to medication.

However one thing that worked beautifully for me once was cyproheptadine (in Australia also known as periactin). It's an older generation anti-histamine which I took in dosage form of up to 12 mgs at night. I built up slowly to the 12mgs. Started off at 4mgs for 3 nights, then 8mgs for next 3 nights then 12mgs from then on. For 3 months I did not have a single migraine. But unfortunately the effect died. My neurologist told me a 'holiday' from the med might make it kick in again. So I stopped it for some months and then started and it did work, not as well, but still pretty well. I've had a number of holidays now from the med when it stopped working and unfortunately it does nothing for me now.

However there was a person posting on an old dys. site that is now defunct who said that the cyproheptadine worked very well for them and last she wrote about it she said it was still working. That it had been 'a miracle' for her.

It kind of makes sense for me that cyproheptadine did work for a while. It's an anti-histamine and one of the things that happened when I started to show strong pots symptoms is increasing allergies and also food intolerances. The cyproheptadine will help with that. I now assume I have an over active mast cell condition that causes the hives, and hot burning sensations on my body when I eat certain foods etc. I believe having over active mast cells and the histamine produced by this is connected to my migraines.

Anyway, that's my experience and what I know of the experience of one other person who, last time I interacted with her had had unqualified success with cyproheptadine - it's certainly worth checking with a neurologist about it.

blue

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Hi Rachel,

My son has been diagnosed with a persistent daily headache. A headache specialist diagnosed him with that term. I had never heard of it before but there is information online. Have you had your serotonin levels checked? My son had his checked through a blood test and his were nonexistent.

Last year, my son did have a 3 month period, when his headache was totally gone. During that time period, his serotonin levels were checked again and his levels had come from 0 up to 21. The range for serotonin on this blood test is 55-100. He was still way under the norm but something had defiantly changed for the better. During this time period he was put on a protein/amino acid shake by his cardiologist. The shake is a GNC product. It's called Pro Performance Amplified Wheybolic Extreme 60. I was mixing one scope of shake with one cup of milk 3 times a day. For the first time I thought my son is going to get better. He was standing and walking for about 10 minutes before tremors would start in his legs. His cardiologist thought we might have found the magic shake to keep him going.

However, in January of this year, Tyler had a double round of flu that took him all the way down. All of his symptoms that were under control had come back in vengeance. Through this illness and even at the present time, I have kept Tyler on all his medications and his shake. In March 2013, his levels for serotonin were checked again and they were nonexistent once again. Tyler still has a daily headache that ranges about an 8 of 10 on pain level scale. Tomorrow, Tyler will be seen by his cardiologist and he will be having these levels checked again plus iron and D. I don't know if an amino acid shake would help, but I understand that your body needs these for many different functions.

Rachel

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Hey Rachel, i also have lots of migraine issues that are more persistent outside of the typical headache with aura that i get from time to time. I'm on amitriptyline which is the only thing that stopped my headaches but things like sensativity to light, vertigo/ head dizziness, and sensory overload (with both sounds and vision) are more persistent from day to day. I will say that when i do get a full on migraine headache it usually takes me a week for my vision to calm down and mentally feel normal, i even feel really emotionally all over the place days after a headache, all of this i see as part of my headache "postdrome" (think thats what they call it). Alot of it with me I just have to go with the flow and over time things get better, regulating my sleep cycle is huge for me and eating stuff with magnesium which i think you mentioned. I can't do exercise now but that usually tends to help my body recover/ regulate itself. And if nitrates are not a known trigger to you i would look at that their basiclaly in any pork or ham type products, and sometimes in sausage, soups, italian beef, bacon, beets, idk alot of stuff that you wouldn't normally think. Basically just try and eat fresh food, nothing premade or prepared, it tends to lead to less headaches for me.

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Hey Racer,

Just curious if you have your valproic acid levels checked while on the Depakote?

Have a good one,

Sarah :rolleyes:

I have asked them every blood test if they checked. I am told my levels are good or "therapeutic", but then, I am never really sure if they actually know what they are talking about?

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Thank you, everyone! You have given me a lot to think about.

Sarah, I don't usually have auras. If I do they are pretty short and mild. I've never tried heat for my migraines, but I have tried ice. It seems to provide some relief. I haven't tried Valerian Root, Feverfew, or Butterbur, but with my allergies I'm not sure if I should try some of those.

Rachel, I don't believe I've ever had my serotonin levels checked. It is something I can ask my doctor about.

Statesof, that's interesting that your sensory overload symptoms are worse while on amitriptyline. Those are the symptoms that improved the most for me while on that med. Just goes to show how we all respond differently to treatments!

My sleep has been very broken up in the last two weeks. Recently it has been taking me 16 hours just to get 8 hours of sleep. I wake up often in the night and am sometimes wide awake (but terribly sleepy) for 1-3 hours. At this point I don't think that amitriptyline can mess up my sleep anymore than it is already messed up! So I'll be asking my doctor about going back on the medication. I do take melatonin while on the amitriptyline, so that helps some with my sleep.

I have an appointment coming up soon with my doctor. Hopefully there will be migraine relief in my near future!

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I cannot tolerate many of the drugs listed above (including all pain meds, nasaids, steroids and narcotics) and while this is by no means a cure all, a dye free benedryl, will take my migraine of a 9 down to a 7.

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I have been struggling with migraines these whole five months since I've had these pots symptoms. Some days it's non stop headaches all day and other days I hardly get any. Mine seem to be related to posture

I wake up with one sometimes in the morning maybe from blood posing at night? I also seem to always get one while driving I don't know if this is also due to the fact that I am sitting completely upright. I haven't found much that helps yet. They just kind of come and go on their own and sometimes if I drink a little more water or eat a little somthing salty it helps. Mostly what helps is trying to keep busy and then I won't notice it as much, unless it's a really bad one.

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Kelly and anyone else re benedryl. does it affect your heart rate? Slower or raise it? I took it years ago, before POTS, and it made me sort of hyper but I guess I could try it again. Also, amitryptilane has histamine blocking properties, doesn't it? Compared to the SSRI's I think.

I need something for when the most severe ones come on and will try the dye free as nothing other than tylenol or aspirin are tolerable for me. Do you take the benadryl throughout the headache or just one dose?

Benedryl is an H1 blocker right? Would zantac or that class of meds help with a migraine (they are H2's)

Sorry, this seems like random rambling, but I am trying to figure it out as all of you above and we all have some many med sensitivities and can't take the triptans like most folks.

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Hi Rachel

The one and only thing that has helped Tyler sleep through the night is the extended release clonidine. When the ear infection started, he did stop sleeping through night while taking the extended release clonidine. Two days ago, he started sleeping through the nights again. Thank goodness! Sleep is so important. My son has tried the other medications that you have mentioned Rachel but they had know effect on him or his sleep. Hope your next doctor's appointment goes well and maybe you will get some more answers. Please share if you find something that helps with headache. Being sleep deprived will make a headache worse and if the immune system is not functioning correctly it's a double whammy.

Rachel

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The only thing that keeps my migraines under control is tons of gatorade and using my oxygen machine. I used to wake with terrible migraines in the mornings and even had ones that would last days or a week at times. I always sleep with my oxygen on and dont get the headaches like I used to. I use the oxygen during the day as needed but always sleep and even nap using it and for some reason it helps. It is not the reason I was prescribed it but coincidentally it helps. If I feel a headache coming on I use the oxygen too and it typically stops it.

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