Hello Everyone!

Hi everyone!
I am new here. My name is Cathy. I have had migraines since 1999. I even recall the month (not quite the date), but I knew it was a migraine. They were passed down from my dad...as a child I remember him coming home from work and sitting in his chair in a dark room. He would take midrin; which seemed to work ok for him. Luckily, he does not get them anymore - when asked why, he says, "I am retired!" Not really a choice for me at this point in my life!
I live in Litchfield Park, AZ with my husband and 2-dogs. The dogs are great little "nanas" when it comes to comforting me, but the husband is hit and miss.
I have tried everything from Zomig to Relapax. Nothing consistently works, except Relapax works sometimes, but makes me worthless the rest of the day and is very expensive
I went for a while were they seemed to go dormant, but have gotten worse over the past 2-years. I went from getting one once every couple of months to at least 10-times a month. I do not get the auras, but I do get nauseous and need to be in a dark, cool place. Sometimes a nice, warm shower with the water directly hitting the painful area(s) offers some relief.
What I find the most challenging is how I am treated by friends, family, and work. No one seems to understand how this affects me and how debilitating it can be. They think it is "just a headache", which is the most frustrating to me. I have even lost a job because of my migraines.
I generally wake up with them - I am a terrible insomniac and this does NOT help.
I am happy to be a part of a group that understands and look forward to any assistance and resources you all mind have. In addition, I hope that I can offer some insight. I have become especially passionate about this in the past year, not only because I have had them for so long, but because of the issues I have had with my ex-job and people who are ignorant and do not understand.

It is nice to meet everyone!

Cat

Hello there and welcome

Sorry to hear they are getting worse for you - but you are certainly amongst friends here - who will totally understand

But you are quite right there is a lot if ignorant people out there who do not understand, but my hope is, in time, to change that by better education. To be fair I did not know they could go chronic until I went chronic! I do not think the media does a good enough job in describing the illness either, as its so different for a lot of people they tend to generalise and miss the point that the headache is but one part of it!

One thing I have found helped, with the other half, was to take him to the consultant meetings with me, he then understood and is amazing now But I do have to remind family lol someone suggested I say I have a 'neurological disease ' only today and I am considering that. I still think we should use the word migraine but refer to it as an illness or disease and not a condition!.

Just had a thought - have you tried Amitriptyline for the sleep issue - when i had my stroke I could not sleep for toffee, would wake up all the time and this drug helped loads, kind of helped me retrain my brain to sleep lol I also found that if I eat something and drink a coffee before bed they are not as bad in the mornings - not sure if you have tried that. Although the coffee might not help with the insomnia

Tee

Thank you Tee. I was on Amitriptyline for a while, but then my doctor took me off of it. Every doctor has their own idea of what to do (I think it was a time when I changed insurance and then had to change doctors). I have found, as I am sure you have, that general practitioners just do not know enough about migraines to know how to treat/prevent them. So, you end up with a grocery list of drugs to try. I was on I was on Topamax for a few years and there were mixed feelings about that.
Thank you for the ideas. I will try them out.
Nice to meet you!

Cat

LOL so true - GPs have a limited knowledge - I now work with a great headache neurologist consultant - I have been down the Topamax route too - send me loopy lol

Just had botox and have to say that has worked better then any drug - not 100% - but things are better

I have tried the botox - it was more for cosmetic reasons, but I did notice that it worked for about a week.

Hi and welcome! You're definitely amongst people who understand here. Your dogs sound lovely.

Catfrost wrote:I have tried the botox - it was more for cosmetic reasons, but I did notice that it worked for about a week.

Oh that is interesting - might be worth having a go with the medical version then - but its 31 injections, in forehead, side of head, neck and shoulders - should last a few months

Thank you - I will check that out. Of course, when I got it, it was only on my face.

Cat

Hi just wondering how you are, did you go for the botox?

Hi just wondering how you are, did you go for the botox?

Hi Catfrost Hope you are doing better and just busy. If you are still having a sleep problem have you tried listening to relaxation CDs, used deep breathing techniques, and things like that? Not everyone can deal with scents well, but I find a little spritz of lavender on my pillowcase of washcloth to cover my eyes with is very soothing and helps me get to sleep. I like to listen to meditation/guided imagery/ nature sounds, and especially those that suggest deep breathing. It really helps me get to sleep. That or listen to audiobooks, but not one that is really interesting. There are tons for fee online (Librivox.com) is one. My fav. sleep CD is by Kelly Howell, very nice voice, very well prepared, calming sounds that help you get into a deep sleep. One of the best I have listened to and believe me I own many. Also if you are not milk sensitive, a cup of warm milk with a little Almond extract and just a touch of honey helps with a little typtan to lull you to sleep as well. Also if you try taking a warm shower before bed, after patting yourself dry (don't do brisk rub that energizes you) use a soothing lotion or some calming essential oils and while sitting on a towel next to your bed, start with your feet and work your way up and give yourself a nice massage. Be gentle but if you can really work to ease up the muscles at the back of your neck, then over your shoulders and the area just below your shoulders. You can then also massage your face, gently work the scalp, forehead, cheeks, around the eyes, temple, ears, do the neck again. Now slip into those warm pjs and climb into bed, listen to a meditation tape, do deep breath cleansing breaths, then bak to a normal pattern but concentrate on your breath. These are all great helps and I use them often. I have to admit I sleep best doing these things. Also make sure there are no lights on in your room, and no bright clock light in your face. I was told to try to go to bed and get up at the same time every day. No television or computer in bed (unless listening to relaxation and meditation stuff). I also take 2 mgs of Valium when necessary. It does not leave me as groggy as some of the other ones do. It is a bear when you can't sleep and I truly feel for you. hopefully this may help. Jerri

Hi Jerri!
Thank you for the advice. I have not tried listening to the relaxing music - I have tried some of the relaxation techniques like the breathing and there was one that suggested that you convince yourself that body parts feel heavy and it was supposed to help relax. Like self-talk or self-hypnosis. I love lavender and do ok with it. I have the air fresheners in my bedroom. I have not tried the mist on the pillow. Do you think that the mist directly on the pillow would work better than an air freshener?
I also do take warm showers/bath before bed - I did not know about the patting down thing. I will definitely try that - never really thought that this could impact sleep, but it makes sense. Also, I do like to sleep in a dark room. I found out early that light kills me. So, I make sure that things that have light are either turned away or covered up.
Your suggestions are very helpful. I really appreciate it!

Cat

I prefer to use pure essential oils for therapy purposes. Although I like perfumes and most don't bother me they don't have the same effects as essential oils. I have a small spray bottle that I keep by my bed, with about 80 percent water and 20 percent Lavender essential oil. Shake the bottle before spraying to incorporate the two well. Besides misting your pillow case, or a wash cloth to lay across your face, you can also spray the wall of your shower with a little before you turn on the hot water and take your shower. You will think you are at the spa. Lavender is very therapeutic and good for many things besides sleep and just smelling nice. I saw a sleep doctor when I could not get to sleep before 3a every night. He suggested that I stay up as long as I can until I got really sleepy, and then FORCE myself to stay awake another 30 minutes. Do this for 3 - 5 days and then start making myself go to be a 1/2 hour earlier each night. You have to also get up the same time every day and naps were not allowed. I found myself so tired I just had to go to bed and got myself into a good sleep pattern in a short time. No caffeine after 2p, in my case noon. Like you I like the self hypnosis audios and do find they work. There are some that are really good with pain too, having you tense different muscle groups then total relaxation. There is another kind that takes you on a mental journey. One I had was to envision going on a walk in the woods and finding a hiding place (like going into and down under a very large hollowed out tree, which takes you to a sanctuary. (Or was that Alice in Wonder Land.) LOL.... The gentle massage techniques work really good too, for circulation and relaxing the muscles. There are several other good essentials oils for calming and relaxing: Rosewood, Geramnium, Clary Sage, Ylang Ylang. But Lavendar is my fav. You can use a little almond oil with the essentials and do a gentle rub down while doing the deep breathing. I have a ton of audio sleep helps from music, nature sounds, and tones that are said to help one get into a deep sleep. Some of my fav sleep music is not only very calming but over 30 or 40 minutes it just keep getting slower and more sedate. There are also some hypnosis ones like you mentioned that help with pain levels by having you contract and hold the various muscle groups in your body, working your way from head to toe. They really do help. My doctor has given me Valium but I try not to use it, as I take so many medications already. There are a few herbal or OTC things like Valerian and Melatonin that work well, just don't mix with any RX or alcohol. Speaking of which alcohol can also keep you from a good nights sleep. While it may make you drowsy at first, the alcohol changes to sugar and you get that spike in the middle of the night. And boom there you are wide awake again. Keep working on it and let us know how it goes and if you come up with any tips of your own. Jerri