What actually works for me

View previous topic View next topic Go down

What actually works for me

Post  PhDiver on Fri Sep 06, 2013 10:19 pm

Hey Guys,

I'm new to the forums. I'll spare you my story with the exception that I've had blinding migraines/aura my entire life and have only figured out in the last few years how to regulate, not cure them. I've done it all - had an MRI, seen two nuerologists. Let's face it, regulation is almost considered success to those among us who are regular sufferers. After all, neurologists aren't even sure what exactly causes migraines. It could be overactive serotonin receptors, hormone imbalances, etc. If you're like me you don't even care.

So let's cut to the chase. What works for me? It's a combination of things including lifestyle changes as well as regular and emergency supplementation. First and foremost I find that stress at work definitely seems to play a role. More stress=more migraines. Duh. In addition, sleep deprivation=more migraines. This means if I'm doing something that means I may end up with less than 8 hours of sleep I simply don't do it now. No staying out late ever. The only reason that it is even an option now is because I've finally gotten them under control.

Next, diet. Nothing that is a known vasodilator/constrictor. This means ANYTHING with high sodium or MSG. No take out. Bland food. It takes commitment but once I started doing this I had a fewer number of migraines.

Supplements. I always find it humorous when I tell people I have migraines and they suggest something to me. "Have you tried excedrin?" My reply " "Have you had a migraine?" So now I'm on a regimen. My neurologist recommended butterbur, an herb frequently used with success in Europe. Why Europe? Well it turns out butterbur is a known hepatoxin. That is it's toxic to your liver. I'll trade abuse on my liver for a lesser number of migraines any day. I take it every two days. Next, we have something a fellow sufferer recommended to me. This stuff called Migraine Mender by a company called Elk Haven Herbals. It's got a combination of melatonin, nicotinic acid, riboflavin, and valerenic acid in it. Valerenic acid is where valproic acid was derived. I've been on valproic acid for my migraines before too. I take the Migraine Mender everyday as it is recommended= less migraines.

Do I still get migraines after doing all of this? YUP. When one strikes I take treximet, at 27 dollars a pill, with insurance. In fact, I had one the other night. Woke up with one. If I could have focused long enough to see straight I might have jumped off my balcony. But, since the other night it had been TWO MONTHS without one, following my regimen, trying to maintain some form of regulation. Two months isn't long they say? Well then I doubt they have real migraines. Anyone else had any luck with a specific lifestyle/ supplementation regimen?

PhDiver

Posts : 3
Join date : 2013-09-06

Back to top Go down

Re: What actually works for me

Post  dcook60 on Sat Sep 07, 2013 5:22 pm

thanks for your (short version) story.  mine is too long to post, at 44 years. i've been posting here for 17 years, so it's all here, in bits and pieces.

YES, to the lifestyle and diet assistance.  MSG in its myriad forms (at least 40-50 other names) is a killer for me.

sleep, oh that elusive sleep makes a huge difference.  i've had fibromyalgia most of my life, since mono at about age 12.  it was diagnosed when i was 50, (now 73) and the latest thinking is that this disorder is at the elemental level a sleep disorder.  if i didn't take sleeping drugs i would get zero sleep, so this is a huge factor. and often i can't get proper sleep with the drugs, either. one builds a tolerance, as is common with a lot of drugs, so they don't work as they did at first.

i looked at the elk haven website to see the product you mentioned.  since they did not give ingredients and amounts, i wrote to them and they answered back almost right away.  i MAY have the courage to try this, though i have taken each of the ingredients separately without help, over many years.

welcome to the forum.  sorry you have to be here, but i'd say yours is a success story.  regulation of our lives is not what most people find appealing, but if one gets a migraine reduction then it's worth every bit of inconvenience!  dianne
avatar
dcook60

Posts : 501
Join date : 2009-12-03
Location : spokane, WA

Back to top Go down

Re: What actually works for me

Post  Sara79 on Sat Sep 07, 2013 5:30 pm

Could you share the quantity info you got? I'm curious about this for both me and DH, but I'll have to check it out with my current meds

Sara79

Posts : 241
Join date : 2009-12-04

Back to top Go down

Re: What actually works for me

Post  dcook60 on Sat Sep 07, 2013 9:29 pm

sara, here is what the company wrote:  (you will have to look up the details on the ingredients - try wikipedia).

60 mcg. valerenic acid (from valerian root, i think)
1.6 mg melatonin
16 mg. nicotinic acid
3.8 mg. riboflavin (a B vitamin)  

they did say if i react to any of the ingredients, i could get money-back.  i told them how ultra-sensitive i am.  but don't tell 'em i told you, ok?!  dianne
avatar
dcook60

Posts : 501
Join date : 2009-12-03
Location : spokane, WA

Back to top Go down

Re: What actually works for me

Post  Cindy*W on Tue Sep 10, 2013 5:30 am

Ph,  I am so glad to hear that you have found something that works for you!

And thanks so much for posting here about it.

Like Dianne, I won't go into my whole story since I have done it many times on this site, but I will tell you that I have been to several headache specialists, neuros, MD's, Psychologist, most recently a neuro optholmologist, and am in Pain Management.

I know exactly what you mean by well meaning friends and family who always have some new idea for you to try.

Most recent one for me was Sumatriptan (it works for some friend of my Mom's) and I had to explain to her that triptans are one of the first things you try and I have a terrible reaction to them.

Dianne, you are so right about the elusive sleep.

The MD I used to go to always said he thought I would be so much better off if he could find something to give me a normal sleep pattern.

I usually take hydroxyzine for sleep which helps alot, but haven't had any for the last 3 months because I have been waiting to get into a new MD and the Pain Management Doc only wants to prescribe pain meds only.  They want you family Doc to write everything else.

Needless to say with no Hydroxyzine and the horrible heat the last few months, I have been a mess.

Been to the ER three times in 6 monts and can't see the PM Doc again til end of October.

He is considering giving me home injections to try but October seems so far away and they won't change any meds without an appt with the actual Doctor where I usually see the PA.

Anyway, I may just give this a try.  So you can really get your money back if it doesn't work for you?

Wow, that would be fantastic.

I have felt so bad these last few months and have really been down, but I came across a little boy on Youtube that has something called EB where he lives with sores all over his body and I thought, "Wow, there is always someone worse off than I am and I need to remember that."

Thanks again for your posts PH and Dianne.  

Take care.

Cindy
avatar
Cindy*W

Posts : 300
Join date : 2009-12-16
Location : Nebraska

Back to top Go down

Re: What actually works for me

Post  dcook60 on Wed Sep 11, 2013 9:21 am

cindy, there are some old, old sayings which are still profound. my mother (who would be 100 if she had lived) used to tell us kids when we were complaining about something "i used to feel sorry for myself that i didn't have new shoes, until i met a man who had no feet". dianne the philosopher
avatar
dcook60

Posts : 501
Join date : 2009-12-03
Location : spokane, WA

Back to top Go down

Re: What actually works for me

Post  Cindy*W on Wed Sep 11, 2013 12:06 pm

Dianne,

Your mother must have been very wise with much insight.

Sometimes I whine about things I really shouldn't be.

I have a cousin dying of cancer right now that is the same age I am and that has hit me really hard.

I need to pull out my inner strength more and just endure.

If I start whining on here too much, remind me of what I just said!

Thanks again for your post.

Cindy
avatar
Cindy*W

Posts : 300
Join date : 2009-12-16
Location : Nebraska

Back to top Go down

Confirmed dose

Post  PhDiver on Fri Sep 13, 2013 1:13 pm

dcook60 wrote:sara, here is what the company wrote:  (you will have to look up the details on the ingredients - try wikipedia).

60 mcg. valerenic acid (from valerian root, i think)
1.6 mg melatonin
16 mg. nicotinic acid
3.8 mg. riboflavin (a B vitamin)  

they did say if i react to any of the ingredients, i could get money-back.  i told them how ultra-sensitive i am.  but don't tell 'em i told you, ok?!  dianne
Dianne,

Yup this is what's on the bottle. It's per 1mL dose - to be taken daily

PhDiver

Posts : 3
Join date : 2013-09-06

Back to top Go down

Re: What actually works for me

Post  tortoisegirl on Sun Sep 15, 2013 9:32 pm

Thank you for sharing! As for the Treximet cost, what about switching to generic Sumatriptan plus an otc Aleve (Naproxen)? Sorry if you've tried that already; I know some folks can tell the difference between brand and generic.

The Treximet has 85mg of sumatriptan so you'd have to switch the dose a bit, as sumatriptan comes in 25, 50, or 100mg. My pharmacy's cash price on Sumatriptan is under $100 for 9 of the 100mg tabs.

That, or shop around for the price and have your pharmacy price match a cheaper pharmacy such as Walmart (most will do this). Best wishes.

tortoisegirl

Posts : 357
Join date : 2009-12-14
Location : Washington

Back to top Go down

Re: What actually works for me

Post  Mini on Fri Sep 20, 2013 5:51 am

You are right that we have to try the combination of treatments that works for each of us. We know better then anyone, that there are no rules when it comes to treating M, we have to find our own way, no matter what doctors and neurologist tell us.

As to butterbur and Europe dilemma. Let me assure you that pharmaceutical laws and regulations in many European countries can be as strict, and in many cases more strict then those in US. For example it is most unusual for doctors to prescribe the powerful opiates/painkillers for M, on a regular basis as it is done routinely in US. There are many more such restrictions.

You are quite right that butterbur in its' natural for is very harmful since it can be carcinogenic. However the butterbur which has been sold in Germany was sold after all carcinogenic elements were eliminated.

IN any case I do not think that at the moment it is being sold here in UK. I am not sure what is happening in other countries.

I think the longer we have M the more we discover that we have to learn a lot, and try a lot of combinations of treatments before we find something that works for us. Being flexible and keeping an open mind is a wise policy. And learning from each other. This forum is the best place as there is so much useful information here.
avatar
Mini

Posts : 850
Join date : 2010-11-06

Back to top Go down

Re: What actually works for me

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum