Scared..in Pain..need Wisdom

[angelloz]

Hello,

Don't quite know how to begin ...but I will just plunge ahead. My life is basically one of two things.....miserable dealing with the autonomic problems that so many of us deal with, or Migraines that have become unbearable. Strangely, when my migraines are at their worst..my other symptoms are less pronounced. Perhaps because the pain raises my blood pressure. I react horribly to medications, I have been given meds in the ER that made me feel like this was it for me. I can only tolorate tylenol...I do take tryptans ( Amerge, Imiterx...) for my migraines and these make me feel terrible and are becoming less effective. I do not take more than two days of pain relief mediicine per week.I have had a severe migraine since Tuesday..have completed my protocal of meds. Between the two I have no life. My husband is a gem but no kind of life for him either..we can't go out etc... I spend nights crying from the pain. Many neurologists ...etc.... I want to be out of pain.

Angelloz

[looneymom]

Have your iron and vitamin D levels been checked? My son has POTS and was living with a nonstop headache. His headache finally went away after these levels came up. He was deficient in both and it took about 10 months to get the levels up. Also make sure you are staying well hydrated. My son always wanted an ice pack at night. This seemed to help him more than anything. POTS is a strange syndrome and effects everyone differently. Sorry you are in so much pain. Have you seen a headache specialist? Sometimes they can help if they understand POTS. Last but not least, Never give up! This fourm has lots of good information that you can take to your doctor.

[jpjd59]

I know the symptoms can be unbearable but my best advice is to not give up and have someone that can be your advocate (your husband perhaps). The more research that you (or your advocate) can do, the better.

My daughter has had POTS for 19 months now (appeared suddenly after a viral illness). We have been to countless doctors. Her symptoms are so severe that she is housebound. I believe we finally may be on the right track now (hopefully within a few months we will know if the meds she is on are helping)

Good luck!

[LMG]

I understand your pain. I too have weekly migraines that leave me in such pain, and nausea etc that I am stuck in bed. No meds can stop them once they begin, or else I can't tolerate the meds. I go over and over my diet, and even stopped florinef in hopes of that helping but no luck.

I am considering botox for the migraines but not sure it will help. I am currently trying natural remedies such as magnesium and am researching Feverfew, and Butterbur, two herbs that seem to help some with migraines. Of course, as you too well understand, I don't know the effect they could have on heart rate, bp and all the other issues we deal with. Will they vasodilate or constrict? I have a list of other things to try- fish oil, coq10, b2 but again, without knowing what causes my migraines, it is a shot in the dark.

I wonder what causes the intense frequent migraines? Mine come out of nowhere.

I will look into the Vit D,as suggested by looney mom. My levels are low.

I am sorry you have to deal with it all. Hope this one relents soon.

Lauren

[angelloz]

Thanks to all...I needed a boost..felt like my ability to cope had hit rock bottom.

I have been thinking about the butterbur and feverfew too.... I keep a food diary...I know onions, dates, and weather changes give me migraines...but what else?? Haven't found other connections and still get them. I eat a very limited diet. I will try some Vit. D , I know I had low levels awhile back. Mine usually last 4 days...then not much of a break inbetween. In the month of Nov. I only had 2 ...what was different??? I don't know. I didn't feel too well in Nov....and like I said..usually when autonomic symptoms are bad..less headaches...what a puzzzle. JpJd59..., I hope things continue to improve for your daughter. I didn't become ill until age 50...so I feel so badly for someone so young to suffer with this..when it should be a great time in her life. Ok so I will try not to give up!

[Katybug]

Angelloz,

I know you said you've seen many neurologists but have any of them actually been headache specialists? Most neuros know the basics but really don't know the most up to date info on treatments. Also, your post was written in a way that sounded like you are trying to treat once you have the headache but have you tried profilactic treatments such as Depakote (anti-seizure) or Verapamil (calcium channel blocker?) I have also found ice at the base of my skull helps my migraines. You can also try using a tennis ball to put pressure/roll around like a massage on the back of your neck for any knots you have there that may be triggering the headaches. Just rest the ball between your neck and the wall or back of a chair and roll away. I had very few headaches in November also...the weather hear in the mid-atlantic was very mold that month...not hot or cold and very little change in barometric pressure from day to day (until the very last couple of days of the month.) Hope you are headache free today.