Hello,
I haven't written in ages, mostly because my headaches and migraines make it hard to be at the computer for too long.
My migraines have progressed horribly, now having headaches every day and migraines most days a month. I am still scrupulous about avoiding rebound headaches (my neurologist warned me about them ages ago), so my medications definetly don't contribute to the pain. Though as a result of limiting my use of pain meds, most days of the month I am in constant pain to at least some degree.
Preventitive medications have been of no use, or the side effects have been unbearable. I've tried so many over the last 3 1/2 decades that I've lost track, though my medical file keeps tabs on all I've tried.
How does one cope with the resulting isolation of living in chronic pain? The only people in my world are my husband and two sons, who are great, but since I haven't been able to work or participate in most activities, all of my former contacts and my two close friends lost touch years ago. I've tried contacting my old friends, but their lives are on different paths now, and they haven't responded.
What to do? I can't always get out of the house, or even drive some days. I never know which days I"ll feel well enough to do anything, never mind even sit down at the computer with the glare (any suggestions on how to combat computer glare would be appreciated also).
Any suggestions on coping with this isolation would be greatly appreciated. My thanks in advance to anyone who can help me.


Have you any food triggers? Msg is a killer for me like many others I looked on Moe's internet site and they said they didn't use it but used a similar hydrolyzed protein but I thought I usually could get away with those if not too strong. Actually started this reply a couple of days ago but kept feeling to bad to keep typing now its day 3 of migraine cycle hope tomorrow is an okay day. So I'm sorry I didn't email back sooner just keep having those bad days with migraines sprinkled with a one or two okay days to try to get the basics done and before you know it a week has gone by. Summers are just terrible for me most days I have a cranky neck and headache and just hope it doesn't get worst from there. No those nasty deck police haven't got us yet but now they are making our simple permit process a nightmare. Shouldn't we get a pass from life when we have chronic illnesses. It just seems that it all keeps getting piled on doesn't it? You keep trying to deal with the illness and everyway you try to adjust to the situation you are in leads to another problem. Oh well what ever doesn't kill us will make jokes about right? I'd go with the traditional saying but I'm not feeling any stronger.
). We often would go hiking after work for an hour in the national forest to stay in shape. Our first home there was on a lot the size of a postage stamp but we thought we were "big gardeners" and excitingly bought three rose bushes and struggled to keep them alive the five years we were in that abode. I know I know sounds so pitiful but if you have ever gardened in a dry desert like state you might give us a little more respect that we were able to keep these roses alive. Forget to water one day and .... ( and with migraines it is really easy to forget to do things as we all know). Then just as you managed to keep the plants watered and the flowers were nicely blooming a huge summer thunderstorm would break out of the sky after days of dryness and burst right on top of your beautiful blooms breaking the heads off. Just as they were recovering stage two storm would come along a few weeks later with high winds and not just driving hard rain but hailstorm the size of softballs (okay okay sometimes they were just the size of golfballs) (yes not unlike this summer here) but if you still do not believe me just know the first year we owned our house everyone in our neighborhood got a free new roof via their insurance (except us our company was stubborn) however we had the last laugh when the very next year all those new roofs got it again and yes this time our insurance paid up. Back to the plants (if they were still alive after the storms ) just as they started once again to bloom labor day weekend would hit and it would always snow for one day and freeze up those sweet blooms and bang another gardening season was done even though there probably wouldn't be another day below 60 till December. Suffice it to say gardening in Colorado was a less than rewarding venture!
Put me in my place don't you think! 








Hi Susan,
Since your doctor is not able to help you reduce the severity and/or frequency of your Migraines, may I sugges it is time to see a Migraine specialist? It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists. In fact, since you are in New England, we have a wonderful headache clinic in CT you may be interested in checking out. It is also listed on the above patient recommended list.
We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.
We hope to hear more from you.
Nancy BonkMyMigraineConnection.com Expert
Hi Nancy,
I guess I am uneasy about going to a headache clinic, because I tried one about 20 years ago at Faulkner Hospital, and it was a total disaster.
I had all of my records sent from my neurologist, about 20 years worth at that point, and the intake person was incredibly patronizing. Wasn't too interested in my personal medical history, just wanted to follow the protocol of the clinic. They treated me as if I knew nothing about migraine or headaches, which as a college professor I'd researched using a world wide data base and followed all current research.
When I met with the doctor, he was imperious and cold. He was the expert, and I was considered a cog in the wheel. If I wanted help with my migraines, I was expected to shut up and put up.
I've been with my neurologist since the 70's, and my headaches had always been manageable until an auto accident injured my neck. Now it seems the headaches, migraines, and chronic pain all stem from my neck (the pain and type of migraine is much different than before) and it is non-operable. Preventitive medications have not helped. My neuro says that my pain is caused by my neck, and once the neck can be healed, the associated problems should be diminished.
Could a headache clinic help with this?
I don't want to go and just be put through all the tests I've already had, retry meds that didn't work, etc.
Plus I'm so sick of being sick, and quite honestly, I don't even feel up to starting over again (I did do an extensive work up 3 years ago that lasted 2 years with multiple different treatments at the Arnold Pain Center at Beth Israel Hospital that didn't help me). I am sick of being put through painful procedures while I'm already in so much pain.
Maybe the headache clinic in CT is different? Has anyone on the forum had any experience with it? How were they treated--as a person with a disease or as a disease? I guess I need some reassurance that I wouldn't be going there just to get more of the same abuse I got at the last headache clinic.
Thanks, any suggestions on where I could get info on the CT headache clinic would be greatly appreciated.
Please reconsider trying a Migraine Clinic. A lot has changed in Migraine management just in the last 5 years. I just started going to the Michigan Head Pain and Neurological Institute in January for chronic Migraine and I am already down to one migraine per week, a huge change in my migraine experience. They use a multi-disciplinary approach, and are very proactive about helping find the right treatment combination that will help you find relief. Patients come there from all over the country.
I, too, understand the isolation from being in pain all of the time. When you get past being able to plan anything, that you can not long count on being available for events, it can become very disheartening. One thing I found was that I had become very withdrawn, with good reason, because of my symptoms, but also depressed, in part because of the combination of prescriptions I was taking. As I started feeling better, I am learning, you can't always just jump right back in to old friendships, sometimes. If folks do not understand illness and pain, they tend to avoid it. I have had to learn to nurture new friends, and do so very slowly.
I have special prescription glasses just for my computer, as my distance and readers aren't quite it - it is amazing how much more comfortable this is, and makes the glare less, as well, with a light tint.
I wish you the very best of luck, and please remember that you are not alone.
Hi Lynne,
Thanks so much for your reassurance about a migraine clinic. I'm so happy to hear of your positive experience. To go from chronic migraine to one migraine a week must be incredible--I can't imagine it! You made such progress in less than a year--that is amazing. The multi-disciplinary approach you mentioned, I believe, is the key to successful treatment. I admit I got frustrated traveling to all the different places I have gone--the neurologist, the physical therapist, the mind-body program, the pain clinic, the accupuncturist, the pharmacy, etc... I wish the clinic you mentioned was close enough for me to use. It's my understanding that the clinic mentioned on the site in Connecticut (not close but at least in New England) is not accepting new patients now. When it does, I will reconsider.
On a positive note, I am going to visit a new neurologist in the next few months, so I'm hoping a new perspective on my case might open new opportunities for migraine management. It's definetly time for a new set of eyes to look at my records.
Speaking of eyes, the recommendation about trying new glasses for the computer is a good idea. Like you, I need glasses (use contacts) for distance, and just started needing readers. Notice, I said needed. Means purchased, still have to get in the habit of getting up and putting them on when I need them. My arms are just not long enough anymore! I'll check in with my eye doctor next time I get my eyes checked about the possibility of glasses to be used while working on the computer.
I wondered if there was just some sort of filter that could be placed on the computer screen....
I truly appreciate you taking the time to comment and share your experience. Your success gives me hope that maybe my chronic condition can be less so.
Take care.
Hi Susan,
Thanks so much for your response, and yes! There are products you can get to put on your computer monitor. Just google the words - computer glare screen - and you will get a lot of choices, some of which are quite affordable. I had actually forgotten about these products and am going to check them out for myself! Thanks for bringing up this great idea. I hope you have a good evening. Lynne
Hi Lynne,
Thanks for the google search tip--I didn't know what these might be called, but I guess they are called what they are. Let me know if you find any you might recommend, or what you might specifically look for in one. I know nothing about these. I'll do some research myself. Hopefully, we'll both find something that can make working at the computer with a migraine more tolerable.
Take care.
Migraine/headache clinics have changed a lot in the last 20 years. A bad experience a long time ago shouldn't make it impossible for you never to go to another Migraine specialist again. And besides, it is always best to pick a doctor rather than a clinic.
Dr. Sheftell in CT is one of the top Migraine specialists in the country. You can't do much better, find a more caring or compassionate doctor than him. I would call him in a heartbeat.
Good luck.....and give him a try!
Dear Nancy,
Thank you, thank you! I will call her/his office this week. I truly appreciate the recommendation.
This may seem kind of silly, but have you tried switching pillows? I switched to a <a href="http://www.buckwheatandbamboo.com/buckwheat-pillows-2/">buckwheat pillow</a> a few months ago and I haven't had a single headache since. I used to get migraines once or twice a week.
Hi,
Yes, I actually do use a buckwheat pillow. Have for the last 4 or 5 years. Hasn't helped, yet I still stick with it.
Thanks for the suggestion, though, willing to try anything that might help.
Take care,
Susan
Sorry to hear to hear that. Best of luck to you! Let me know if you find anything that helps.