Things to make a migraines sufferers life easier

The worst aspect besides the constant pain is the fact that it is such a hidden disability.
Migraine sufferers are neither getting the sympathy they deserve, nor the help that is needed. Chronic migraine sufferers are usually looked at as slightly neurotic hypochondriacs.

Before the internet I thought I was the only person on the planet to have migraines to that extent. Every doc looked at me in disbelieve when I said I had daily migraines. They thought I was exaggerating, attention seeking or addicted to medications. I was also told that daily migraines don't exist. Hell yes they exist .... just look at this forum.

I assembled a list of things that would make a migraine sufferers life easier.

- Getting a years supply of medication (triptans, etc.) instead of running back and forth between a doc and the pharmacy.

- The ability to have consultations with doctors and specialists on the phone or on-line, as it is always uncertain if I can make it to an appointment or not.

- Having medications delivered to your door.

- In the UK there isn't a dedicated migraine clinic like there is in Germany for example. The Migraine clinic is in Koenigstein close to Frankfurt. Sufferers check in for a whole month. During that month, they really focus on you as an individual and try all kinds of tailor made approaches to help with the migraines. A friend of mine (she was addicted to ergotamine for her migraines) went there and they weaned her off the meds. She came out looking and feeling much better. Also being removed from a stressful work/home environment for a month can help to reduce the headaches.

Feel free to add to the list.

P

Hi Petzi,
I agree with most of the things that you wrote.
I think that our disease should at least be treated as a chronical condition with special access to drugs and cures.

I didn't know about the Frankfurt's clinic. It sounds like a unique place and I am going to take more info.

check out their website.

http://www.migraene-klinik.de/en/migraine-clinic/about/koenigstein/

P.

Having someone to listen. And hear you. Just listen.

Being validated.

A gun....

.... no not a gun. I am too much of a chicken to put a gun to my head. Plus I want to be a pretty cadaver and not one with my brains stuck to the wall.

I whish I could cheer you up, but sometimes it feels good to wallow in it.

P.

I get fed up with being told to be positive.
Its like telling a depressed person to pull themselves together.

Give me something to be positive about, some hope of a better future with less pain.
Some life quality.....

THEN I might be able to be positive.
Oh, and there is something between positive and negative.

It would make my life so much easier if my internist would sit down with the other doctors at my local med center and explain what chronic migraine disease is and go over my treatment plan with them.

Going to the ER or clinic for my rescue shots is such a joke. One doctor thinks I'm a druggie, another has never seen a chronic migraine patient and doesn't believe it's possible to have so many migraines, and yet another keeps trying to change my medications without consulting my internist or neuro.

No, I am not wallowing. Just stating the facts. I am soooo tired of sounding positive.

Gail,

I sympathies with you completely and know how low you can get. I have had days where I was just hoping to fall asleep and never wake up again just to escape my own miserable existence.

But than I do have times when I am able to find pleasure in small things, stolen hours where the pain is bearable and you get a break for a while.

I get great pleasure out of my two cats. They make me laugh with their antics and shower me with their feline affections. Their purr alone has a calming and soothing effect on me.

Last year I have taken up beading. I mostly produce jewelry and I find it incredibly rewarding and relaxing. There is a repetitiveness about it that has an almost meditative effect on me and I can get completely lost in it and in turn it enables me to forget about my situation for a while.

I do hope that you are able to find pleasure in small things too, even when at times it seems almost impossible.

Love,

P.

Would you believe I have recently considered getting a cat?? Also, believe it or not, thought about making beaded bracelets?? How did you know this? That is very strange. Maybe migrainures have psychic abilities??

No, I am not a psychic, but in my view many migraine sufferers are highly sensitive and creative people .... so there you go.

P.

PS: My cats rule!

I have never had a cat but always wanted one. Are females the way to go? I would think so. What do you have? (not a migraine subject but what the heck) I am really considering this.

Oh my god Gail, don't get me started on my cats. I will not be able to stop banging on about them.

Well here it goes.

I got Rosie two years ago from an animal shelter (the Battersea Dogs and Cats home). Initially I registered with them as a fosterer (i.e. providing ill kitties with some TLC until they are well enough to be re-homed). Rosie was a sorry looking little thing suffering badly from a chronic flea allergy and was covered in bald patches. Her previous owner just dumped her and because of the way she looked nobody wanted to adopt her. After 3 weeks I have fallen completely and utterly in love with her and my husband and I decided to keep her. Now Rosie rules the roost. Her fur has re-grown, she gained weight and her confidence has sky rocketed. She is an outrageous little diva who loves nothing more than rolling over and having her tummy tickled.

Last year I got another kitten to keep Rosie company. Petzi (also my pseudonym for this forum ... as you migth have noticed) is a tabby boy with a wonderfully cheeky and loving personality. He is about twice the size of Rosie now, but is still submissive to her. If he dares to invade her personal space she knows how to put him into his place. Petzi is the feline equivalent of a Labrador. He is driven only by food and fun and his favorite games are retrieving his toy mouse and winding up Rosie.

There is really not a lot of difference between boys and girls. Boys tend to get bigger and are less prone to hissy fits, but they are both very affectionate and totally adorable.

Keep me posted. I am happy to give more advice on that topic if needed.

P.

Gail,

Absolutely - get a furry companion. While I have dogs, I've had cats in the past. When things are at their worst, my dogs are my reason to keep on going. I've got a clown and 2 cuddlers. They are always glad to see me, and don't mind when I get cross with them. The clown is always doing something funny and makes me laugh and the cuddlers know when I'm having a bad day and get close to me and sleep.

Another beader here. I've decided to try to sell some of my creations or they are going to explode all over the house. Guess I love the pretty shiny things. But I do love giving them away and watching the reaction I get when someone opens the box.

Becky

I have four furbabies myself (I'm trying really hard not to become a crazy cat lady). They're all cuddlers, but usually only on their terms.

My oldest male is really cuddly with me, but he really likes to start fights with all of the other kitties. He'll cuddle the 2 girls from time to time, but never the other male.

My oldest female is really just a leave me alone kitty, but when I go lay down with a doozy, she'll curl up with/on me.

My younger male is a cuddler, he likes to curl up on the couch with me and my hubby, but he's a very big kitty, so in the summer, he's a bit more of a loaner. In the winter, I can just about count on him being in his place with me on the couch or in bed.

My youngest female is the only one we didn't get at a pet rescue. She came 'free' to a good home through a friend. She's a sweetie, but I think her mom and dad were brother and sister, because she's a little 'special.' But she has her spot next to me in bed, and she's there almost every night.

Anyways, when I'm having a bad spell I think they know, since they all get quieter. And when my head is good, they amuse me with their games and interaction.

It's great to see that there are so many animal lovers here, but then the therapeutic value of a furry companion has been known for ages now.

Same here Heeler Lady. All my friends and family are well supplied with the latest Petzi jewelry designs. The uhhhing and ahhhing I get is very rewarding.

The August issue of Bead & Button just arrived (hyperventilating ....)
I am dead keen to try out that brick stitch cuff pattern and some of the beaded beads that are featured in there. This stuff is so addictive ….

P.

Petzi,

It's like chocolate, only worse (more expensive). I'm more of a stringing person but have started getting into the stitching. I also do a bit of wire-wrapping. Still working out my style and what I really love to do (gotta try everything once and see if it's something you like). However, I would always take orders for something I don't truly love to do if it was for someone else for a special event.

I've made so many things for my mom and she always gets compliments and "where did you get that" when she wears it to work. I about made her cry with the Christmas ornaments I did last year (her's were getting ratty and I surprised her with 6 beaded overlays for glass bulbs and 12 copper wire and bead ornaments). She wanted to take everything off the tree and redecorate. Love that aspect.

I just signed up for Bead & Button on-line (it was to get a pattern) but saw that their big Bead & Button show is about 1.5 hours away from me. May have to check it out next year. Not that I need another reason to buy beads....

Heeler,

Yes, I know it can be costly. Especially if you are getting addicted to the Swaros.

Im curious to see some of your stuff. Would also be happy to swap patterns and show off my handy work. Don't really know how to get in touch privately without giving out my private e-mail to everybody.

P.

Petzi

Go up to "you have no new messages" and click on that you'll be able to send Heeler a private message from there. I've gotten to know so many of my Ronda friends better though private messages.