On-Line Migraine Journal

The on-line migraine journal is intended to be an area for migraine sufferers to post their migraine histories and experiences.

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Hello, I've been suffering from migraines for 4 years (never before) I currently live in Panama (Central America) my migraines are getting worse, I have been hospitalized three times since April, nothing seems to work, I think doctors don�t have a clue, they just give me pain killers Demerol/Temgesic type, but nothing to prevent, I try with a diet (least amount of triggers possible) but nothing works so far, I just need some information about new medication or preventing plans out there, I�M REALLY DESPERATE, THANKS A LOT.

Monica

Monica <meugui2@hotmail.com>
Tuesday, July 16, 2002 at 21:13:22



Hello, I'm very glad I found your website!! I was reading some of the other entries and I'm glad to know that I'm not alone in suffering from these horrible migraines (although, I wish we all didn't suffer from them!!) I'm 26 and I've been having horrible migraines since I've been about 10. In fact I just had two last week, one so severe on the right side of my head that I could barely hear out of my right ear, which was a very scary experience. I was too sick and weak to move to get to the ER. I had just been to the ER a few days prior for another migraine and they had to give me Morphine to get rid of the pain! I also see little blind spots all day, everday in my eyesight. My dr, says they're called "Optic Migraines". They're very frustrating because sometimes I can't tell if it's a precursor to a full-blown migraine or just the regular "aura" I see. I've been seeing a nuerologist (a few different ones) over the past 10 years, and I've been on every different medicine. Right now I'm taking 4 different meds a day just for the prevention of the migraines, not to mention any meds that I take when I actually get the headache. I'm only 26, yet I'm taking the same amount of medication that someone in their 70's usally takes!! It's very frustrating because all these medicines just seem to give me a ton of side effects- they don't do very much for the pain. My current neurologist doesn't want to keep precribing me Loritab (codeine) because she's afraid I'll become addicted to it- but it is the ONLY thing that relieves the pain!! I can actually take a couple of them at work and still be able to sit in my quiet office and get some work done. If I can't take them, then I end up having to take a ton of sick time because I get violently ill. I've tried Imitrex, Amerge, Maxalt, Zomig, and a bunch of others- and not ONE of them works!! I'm just so sick of getting these horrible migraines- it's so frustrating to be in such excruciating pain and to not be able to control it!! These migraines run my life, I'm constantly afraid that I'm going to get another one- I'm so scared of going through another 6 hours or a few days of horrible, unbearable pain! It does make it worse when people say "It's just a headache- just take some asprin!" I wish it were that easy!!! I don't know about anyone else who suffers from these, but migraines affect my entire body, not just my head: I get diarrhea, runny nose, fever, chills, stomach ache, and of course, severe vomiting!! The migraine I had this past Saturday still isn't completely gone, yet if I call my Dr. to ask for more Loritab, she won't prescribe me anymore!! I feel that we all have a right to do whatever it takes to relieve the severe pain of these migraines!! Thanks for listening to me vent my frustrations!

Kathleen <bitskits@hotmail.com>
Monday, July 15, 2002 at 11:50:07



Hi

My boyfriend has had migraines last year that went away as we were in thailand at the time we both put it down to the heat. however, they are now back with avengence. He is very reluctant to go to the drs and I am unsure where to start. I realise there is often not a cure to this but should he be getting things ruled out first ie allergies and having a mri scan? the drs seem to want to put him straight on the pills which although they are working i would like to rule everything else out first. any advice would be greatly appreciated.

Sandy Henderson <sandy.henderson@optus.com.au>
Monday, July 15, 2002 at 00:42:55



I would like to contact Sheri at Zeunskatz@aol.com about headaches and pain but when I tried to send my letter it came back unsendable. Could Sheri please contact me or send an email that could go thru?

Carole <CGau34810@aol.com>
Sunday, July 14, 2002 at 10:19:21



Dear Sheri: Read your post and I can certainly relate to the frustration and pain. My migraines are also somehow related to back, shoulder, and neck joints/discs, although every test I've ever had turned up "Normal". I was given the different drugs too, most of which were ineffective or reeked havoc on my stomach. What I did last yesr, was cut out every medication for migraines I was taking (including vitamins, photoestrogen and calcium). I also completely stopped (slowly) caffeine in any form, alcohol, chocolate, MSG and salt. I also decided not to drink tap water (thinking perhaps water was the cause) and drank bottled water. It took a month or two, but very slowly the migraines eased up. I went from headaches every day to occasional headaches. Such an improvement with this change in diet. (I have added vitamins and calcium (in small amounts) back to my diet, without any change in the headache cycle). I still occasionally get a migraine, but its intensity and duration is nothing compared to where I was. I realize that this "remedy" may not work on everyone, but it is definitely worth a try. Good luck to you. Jay

Jay
Saturday, July 13, 2002 at 15:10:51



I can't tell you how much it meant to find this web site. I was looking for something else and this web site came up. I have suffered from migraines since I was 16. They would hit my left side, with terrible pain and nausea. I am now 42 and for the last 5 years I have had horrible headaches. I also was having terrible bladder spasms. It felt like I had a UTI and I would sit in the bathroom for hours. I had so many test done to the bladder and they all came back negative. I went to see the Dr. that has been treating me for the past 5 years and he could tell a difference in my face that very first visit. My eye wouldn't open the whole way, the lines were deeper on one side of my face. He said the bladder spasms are part of what is going on with my headaches. My muscles on the right side of my body are in spasms. The headaches are a litte different than my "normal" migraines. The right side of my neck is swollen, lymph node too. The pain shoots up from behind my ear up into my head, also radiating across the back of my neck. My eye will water, the pressure feels like my head is going to explode. I have been to the ER twice in the past 2 years. What a horrible experience that was. Sat in one ER for 3 hours and was never seen. I left and went to another hospital and had a treatment of Reglan, Benadryl (for the nausea)and Oxygen (they are finding cold oxygen makes the blood vessels shrink and also speeds up the rate the medicine gets into your blood stream). I was treated and out in 2 hours. The second trip didn't go so well. They wouldn't give me medicine till I took a pregnancy test even though I said it would be a BIG star in the east if I was. I couldn't walk the pain was so bad, but there I am crawling to the bathroom to give them their test. I told them what they had done for me before and how well it worked, but no one would listen. I was there for 5 hours. I had taken Firional with Codeine for years, but it was starting to upset my stomach more, so my doctor gave me Imitrex nasal. That is great for when you are throwing up, but it leaves a horrible taste in my mouth adding to the nausea. I have had MRI,CAT scans,physical therapy,TENS unit,and x-rays. The MRI showed a black spot on my left frontal lobe, the neurologist said maybe my Mom dropped me on my head (she didn't)and I have not been in any accidents that would have caused it. He wrote a note to my Dr. saying I have emotional issues. Try having a headache 24 hours a day every day for over 5 years and not have emotional issues. All the Dr's want to do is shove more pills down my throat. I was also tested for thoracic outlet syndrome. It showed some signs, but apparently I am not "bad" enough yet for them to do something. I have degeneration between my C5-6 vertebra's. I have had physical therapy, chiropractic care, injections of steriod & lidocaine. I had occipital nerve block injections and last month a cervical rhizotomy. Since the rhizotomy I have not been able to touch my neck, spine and shoulder area without pain. I am back in physical therapy to try and relax the muscles. I have been on sleeping medicine (because I can't sleep due to the pain), Ritalin (to help me wake up from sleeping), Celexa to help me "calm" down, Oxycontin for the pain (what a wonder drug that is, I get no nausea from it, I was scared they were going to take it off the market), Ditropan XL for the bladder spasms, Zomig for when the migraines show up, muscle relaxers of different kinds. So many more medicines it is hard to keep track. Last year my right lymph node got worse and my family Dr. put me on Cipro. A week later my joints in my hands, shoulder, elbow and knees where swollen, red and terribly painful. Back to the family Dr who tested me for lyme,lupus and Rheumatoid Arth. It came back positive for lupus and I was off to a Rheumatologist. For over a year he has been so nasty to me, but it so hard to get in to see a Dr. in my area and he was supposed to be the best. I was on Plaquenil, naprosyn and he was going to put me on Vioxx. I stopped taking them all and so far no swelling in the joints. Subsequent test come back negative for lupus, but I am now termed
"undifferentiated connective tissue disease. Short for I don't know what is wrong with you. People say to me "you look good" and think I am faking it. I have been off work since April (4 months last year)and I don't know what I am going to do because my benefits will soon run out. I was so tired at work I would fall asleep during lunch and my office is very noisy. I have 10 more years before I can retire. My Dr. wanted to try botox injections, but my insurance won't pay for it and I can't. I am so depressed. I don't think I can go more years like this. I am so tired I am in bed by 7pm and sleep (more like short naps till the pain wakes me up)alot during the day. What type of a life is that. My friends think I bring it on myself. No one understands and so I just withdraw into myself. People at work have been cruel saying I am faking it, trying to get out of work. I have been "outstanding" ratings for 20 years where I work. They won't talk to me. The Dr's just look at me and shrug their shoulders. They have no idea what is causing the pain. I use to be running doing house work, yard work, out with friends till all hours. Now going to the grocery store wipes me out. I haven't been back to my family home for months because I can't do the drive. There was a time (before the Ritalin and Celexa) that I would sleep all weekend. Reading the web site was a little bit of help. It made me realize I am not alone and their are others who go through what I am, and it made me sad that we must suffer like this. My 8 year old neice started having migraines. Why can't researchers do something for us? Does anyone out there have some of the symptoms I do? Any ideas or words of advise. I am desparate. I pray everynight that one day, we all will wake up, pain free so when can be back to our normal lives. God bless you all.

Sheri <zeunskatz@aol.com>
Thursday, July 11, 2002 at 21:18:16



I am so tired of Doctors not caring about their migraine patients. I have been to 2 different ones in the past 4 months. They treat you like dirt. They are not interested in your pain or progress or your opinion. They just treat you like a drug seeker. The 2 doctors I have seen are cruel. Then it adds to your stress and cause more migraines. I have had migraines for 20 yrs. I know my diagnosis better than anyone. I know what works & what doesn't. They don't seem to care. What are you supposed to do? Has anyone else has this problem?

Melissa Acton <macton13@hotmail.com>
Wednesday, July 10, 2002 at 15:51:52



Hello friends, I had the most unusal episode last night. I got what seemed like a muscule spasm in my head. It was on my left side and my migraines are normally on the right. I went to the ER at 2:30 am, I was crying and holding my head, as putting pressure on it seemed to help some. I was put in a room right away. The Doctor who saw me used to work at the hospital I usually go to so he remembered me and what I take for my migraines. I was given 4 mg Stadol and 50 mgs of Phenergan. Most of the doctors that work there will not give me Stadol. Alot of them have a policy of not giving narcotics to people who suffer from migraines. I do not think most doctors have migraines, if they did they might understand our pain a little better. I am just so glad that I got to see the Doctor I did. I am having a good night as I have not had a headache all day and none so far this night. I will go to sleep at 3 to 4 am and just hope no pain intrudes. I want a nice night with my hubby. We are going to watch a movie and just talk and cuddle a little, I think we deserve it after last night. I thank you all for the support you have given me over the years. Tay Hodges

Tay Hodges <tayhodges59@hotmail.com>
Wednesday, July 10, 2002 at 02:11:57



I have to say that you people are amazing. You have helped me immensly just through the encouraging emails I have received. I have handed in my resignation at work and my managing director who has also suffered from migraines has offered me to take my notice as paid leave. Adn I promised Tina I have been to my doctor and unfortunately it was worse than I had feared. He was useless. He told me they were serial headaches, he gave me an injection that left me wobbly and tired but did nothing for the pain or queaziness. And prescribed Co-Codomal, paracetamol and Codine, it costs �6.20 for a prescription and for exactly the same pills over the counter, (you don't need a prescription to buy them) it was �4.00. He didn't care he was taking the piss to put it bluntely. I was very upset because I have tried it before and it did nothing for me, I am going to my doctor and telling him where to shove his prescription. I'm not an idiot, I know he knew nothing of what I was saying because he has not even retrieved my medical records from my last doctor. I will be placing a formal complaint. Thank to Tina and Rosemarie for their help, advice and sympathy, it is much appreicated. I will be looking up neurologists and headache clinics in my area as soon as I have finished writing this. I have researched on the internet and will be posting my finds as soon as possible.

Thanks guys,

have a headache free day.
XX

P.

PinkLilith <PinkLilith@hotmail.com>
Tuesday, July 9, 2002 at 04:47:42



I have experienced migraines since I was 13. I am now 42. I went so far as aving a hysterectomy in hope that a hrt patch would solve my problem. id didnt' work I was going up to Jomas Jeffrson Headache center for awhile and that did not help for long. They tried DHE45 im injections. I have been on amytripalin, amerge, migranal, toradol, prozac, apaxil depokote, caffergot,imitrex, prednisone, periactin, stadol ns, verapamil, atavain, indocin, compazine, phenagren, cogentin, and this is just a sampling over the last 29 years. We have documented 42 different drugs. Well I really got sick and tired of all the meds I was taking and decided I really did not want to have a liver transplant while trying to get rid of the headaches. I have discovered a great option first I went to see and Osteopath (differant from a chiropractor) he uses soft tissue manipulation and he is an MD. I also started seeing an anethesisalogist sp? for Greater Ocipalit Nerve blocks. Two small needles are injected into the base of the skull. I have had a wonderful releaf of migraines associated with neck pain. (I broke two of my cervical vertabrate in 1984 and was in a halo vest for 3 months and then had to have the vertibrea fused.) I think this procedure has reall helped me I have had fewer headaches going this route and you can get the injections about every three to four weeks. It is much better that taking a steriod (prenisone) which travels throughout you body. The injection is right at the spot of the problem. (if you have neck pain with headache I have found) I see a wonderful Dr in Charlottesville, Virginia He is affiliated with Martha Jefferson Hospital. Both of them are. I no longer nee to see the Osteopath because what he does is suppose to be perminant.I guess I will just have to what for fall/winter to see if that is the case. I would STRONGLY recommend checking this out I was as bad as it could get I have had a number of Hospital stays before this treatment for headaches. One stay was for 9 days. This has Definately given me my life back. One more thing it took about 3 to 4 visits for the Oseopath to really make an improvement. These visits have been covered by my insureance company (Trigon) with a pcp referral. Good Luck and God Bless
Cheryle

Cheryle
Sunday, July 7, 2002 at 04:34:35



My experience with managing migraines is somewhat unique. To begin with, the headache is always preceded by having neck, back and/or shoulder pain. Typically, my stomach is quesy, I yawn alot, I burp alot (sorry) have all the sensitivies to light, sound and smell and the headache develops on one side or the other. As the headache worsens, I take to my bed and can stay there up to three days in this hellish state sleeping, vomiting and putting ice packs on my poor throbbing head. Last year, however, I went to a neurologist who, after testing me, agreed that I have "varient" migraines. One of his suggestions was for me to take compazine (an anti-nausea drug) as soon as I realize that the migraine symptoms are beginning. Then, if that doesn't "break the cycle", he said to take Amerge (a triptain drug). ANYWAY, the point is that when I take the compazine first (to get the nausea and burping under control) the headache doesn't come. Very rarely do I have to take the Amerge. I do not know the correlation between the two, but apparently the compazine is stopping the cycle of the headache. If you have similar symptoms, it's worth trying compazine. Joanie

Joanie
Friday, July 5, 2002 at 14:09:16



This is my first entry so bear with me. I am looking for some possible tips on new meds to try. I have been suffering for about 8 years now and they have progressively gotten worse. the past 5 days has been absolute hell. i had a migraine from saturday evening through wednesday evening which includes two visits to the er. To prevent them I have tried Sarafem, Inderal 60mg and 80mg, and currently Gabatril which I have stopped due to the side effects. For pain I have tried all the over the counter drugs plus Midrin, Lortab, Imitrex, Zomig, Axert, Maxalt, Hydrocodone, and Demerol/Phenergran injections. Zomig usually helps, but I really am not able to function and the Axerts only work if caught early on. I am so frustrated at this point that i just don't know what to do. Please help!!! Any info would be great!

Nicole <neshaw212YAHOO.COM>
Thursday, July 4, 2002 at 18:03:44



This may seem pretty strange to you that I am here when I have a migraine but I am searching the internet for something to stop this pain, it hurts so bad, my eyes feel so heavey and I just want to sleep, but I am stuck at work with no one to cover for me. People keep turning the lights on but I don't want them on and since I am the only one in here I feel that should be up to me. I need something to make this go away, I have been on Half Inderel and Inderel 32, migraleve, changed my diet, used oils, neck massages. I am even thinking about acupuncture. When I have one, even faint smells make me feel sick. Words change colour dart around on the page when I try to read. My neck becomes very sore and stiff, and my head feels like its in some sort of torture device, where they tighten it around your head, squeezing tighter and tighter. Sometimes I can ignore it, but when it goes on for hours it just gets harder and harder to ignore, all I want to do is sleep but I can't sleep because it hurts. Sometimes I will have them for days on end. They will go away at night for a couple of hours and I will sleep and then it will wake me up.

I haven't had them for a while and now they have started up again, not quite as bad yet, but gradually getting worse, and while I think I know what causes them I cannot stop the pain, when it is here. I don't know what to do, I don't know my new doctor, it was my old one that knew all about them and now I live too far away. Has anyone got any advice before I pass out on my desk?

Please let me know.

P.

PinkLilith <PinkLilith@hotmail.com>
Thursday, July 4, 2002 at 10:18:07



I have been having "migranes" for 12 years...I would go to the doctor and he would just keep giving me a different med...he has me on 5 differnt ones right now. I finally got so tired of having 3-4 bad ones a week and a daily so-so one, that I went to a different doc. This was last week, he sent me to get a cat scan. The results were in this morning, he said everything looked normal, except that I have muscle spasms in my shoulders and neck. He "thinks" that I have "chronic daily headache syndrome". But he admits that he doesnt really know what that is! Great hu? : ( He has put me on,(yes i know another med!) Neurontin 2 pills 3 times a day and a muscle relaxer at night. has it worked? Well, I have been on it since Thursday and Today I had to go to the ER and get a Toradol shot with the puke shot too! If anyone has any suggestions for relief please email me! I am soooo tired of these! Thanks~April

April Sisk <dazzle_ariel@hotmail.com>
Monday, July 1, 2002 at 21:42:42



oops! I goofed on the recipe for _Marilyn's Migraine-Proof Chocolate Sauce_ For each 15-oz can of evaporated milk, you need 2 cups carob chips and 1 cup honey.
Sorry. I get a little dyslexic from the headaches.
This sauce recipe does not mix well in cold milk, but it makes a great hot chocolate if gently heated with milk.

Another variation which tastes pretty decent and can even be made low calorie is the following:
1 part carob powder
2 parts maple syrup
mix aggressively - carob powder only dissolves under duress.
(_part_ is by volume. example 1 tbsp carob:2 tbsps syrup)
To make it low calorie, try the artificially sweetened maple syrups available now, but do watch out for Nutrasweet@. I only use saccharine or the new sweetener sucralose because aspartame sets off headaches for me.

Changing subjects - watch for any foods that are artificially colored bright red, usually candies. I think that Red #2 food color in the larger quantities used in confections can be a migraine trigger.

Marilyn <Marilyn.jess@pressenter.com>
Monday, July 1, 2002 at 12:28:09


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