Case Histories - September 1997 (1/1)

Rhonda and all my fellow sufferers:

My last entry here, about Ohio's new Intractable Pain Law, has drawn much more response than I ever anticipated. I began replying separately to each person who wrote me and found that I was repeating the same information over and over again (it gives one an understanding why people create FAQ pages.) Anyway, with Rhonda's permission (I hope) I am going to try and answer all of the various questions that so many of you have been asking me.

The thrust of all the emails I've received is essentially the same, "How can I get a similar law passed in my state?"

Well, here is my suggestions. First and foremost, it is extremely important that you do your homework. In that regard, I am willing to send a copy of the Ohio Law, an official explanation of the Ohio Law and a copy of the Ohio Medical Board's Regulations about the Ohio Law (once the Regulations are finalized) to anyone who is willing to send me their snail mail address. Once you have received Ohio's version of the law and its explanation, you will have the name of the sponsors of the new law. It has been my exerience that the sponsors (and their respective legislative assistants) are exceptionally valuable resource persons. They can tell you the names, addresses, etc. of the experts who testified on behalf of the legislation. Additionally, they can point you in the direction of other Associations (like NCPOA, or the Arthritis Association) who share a common interest with each of us in getting a comprehensive Intractable Pain Statute passed in every state. Simply stated, the first place to start, is to pick up pen and pencil (or a telephone) and write to (or call) the sponsors and get as much information from them as possible. After all, they have already been through this process and know how to do it.

When lobbying for a new piece of legislation, the more "legitimate" organizations who are standing up with you and fighting the good fight, the better are your chances of getting a law passed. That means that you should attempt to identify organizations (like your state's Arthritis Association or Multiple Sclerosis Association or ... ) and call them. See if you can get them interested in helping you educate the legislature and persuade them to vote for your proposed statute. Keep a list of all the persons you speak with, the organizations they represent, and their addresses and phone numbers. I can't over-emphasize the importance of appearing as part of a larger collection of people (as compared to one small voice in the wilderness).

I also urge everyone to take a look at the National Pain Outreach Association of America (NCPOA) which can be found at:

http://brain.mgh.harvard.edu:100/ncpainoa.htm

for information and the name and address of the resource people there. I also believe that the people at the Massachusett's General Hospital (one of our Nation's GREAT teaching hospitals) have a very real interest in "Intractable Pain." They may be of some help to you as may the doctors in your community who are now practicing the new speciality "Pain Medicine."

Once you have completed your homework and are able to speak knowledgeably on the subject, the next step is to identify the following people: (1) your own state representative, (2) your own state senator, (3) the chairperson of your state senate committee charged with public health issues, (4) the chairperson of your State's House of Representatives' committee charged with public health issues, (5) the representative of your State Medical Board who will have input on this issue, (6) the person in your Governor's office who is charged with following public health issues.

Your next step is to call each of the above persons and make an appointment to meet and talk with them. You should bring all of your research with you to that appointment, including, particularly, copies of similar laws that have been passed in other states. I know that Ohio and Louisiana have passed similar laws. There may be other states, too.

In Lobbying (a function I preformed for many years before my migraines finally disabled me), IT IS THE SQUEAKY (BUT POLITE) WHEEL THAT GETS THE GREASE. That means, that if you are serious about getting your state to act, you need to remain in frequent contact with the various legislators, associations, executive branch members and others who have an interest in your proposed law. Meet with all of them. Plan joint strategies. Agree among yourselves who will be responsible for each step in the strategy. Follow through. Make certain that each person does what he or she promised to do. UNFAILINGLY, BE POLITE AND THANK EACH PERSON WHO HELPS YOU. A written thank you (handwritten, on a small card) carries a disproportionately large weight.

Contrary to common public belief, it is not merely fat cats with big purses who get "special interest" legislation passed. Genuinely concerned private citizens, who are well informed, who have done their homework, who have enlisted the assistance of others with a common interest, and who perservere are responsibile for the overwhelming majority of the successful legislative campaigns in our various states. I have seen it happen countless times. I strongly urge you to give it a try in your home state.

Naturally, I am always willing to offer what meagre assistance and comments that I can. Any of you can reach me at lsolove@netset.com. I may not have anything of value to tell you, but I promise that I will resond to any questions any of you may send me.

Good luck,

---Larry Solove lsolove@netset.com

Hi,

I started having migraines for the first time in my life at 46; I am now 47 and have daily headaches with migraines 3 days prior and during menstruation (including dizzyness, visual disturbance--bright spots flashing, and nausea). This has been pretty disruptive to my life as I am now perimenopausal and having a period every 14-19 days. Has anyone had experience with adding hormones to help with migraines? How about natural progesterone? I am currently using natural progesterone only.

Thanks for any help.

---jerik@sanjose.vlsi.com

Hi Ronda and everyone:

I've been getting classic migraines since junior high. They definitely run in my family..my mother and maternal grandfather had them and I have several first cousins on both sides of the family who "share the joy." My grandfather would pound his forehead and say "flaki flaki" on the onset of one..it's Polish for intestines..and to me perfectly describes the shimmering, zig-zag lines and blind spots that tell that one is on the way. They almost always occur on my right side and it feels like an ice pick is being forced into my eyeball, I throw up, have diarrhea (really interesting when both go on at the same time), hot and cold sweats, running, dripping eyes and nose and tingling and numbness on my left side. This happens very rarely but has anyone out there had trouble speaking..you want to say something but the words are all mixed up almost like a stroke? I've taken cafergot and ergomar on different occassions and while they worked for awhile the headache would just bide its time and come back with a vengence, and sharper ice-pick! Inderal didn't work, fiorinal made me stupid and spacey, elavil made me tired and fat..I'm still trying to get rid of 35 extra pounds, klonapin makes me want to sleep constantly, prozac and zoloft seem to bring them on and made me jittery.....I saw a neurologist who, after shaking my nervous, sweaty hand, wiped his own on his dr. coat in disgust and pretty much told me I was wasting his time with just a "simple classic migraine." (should've barfed on his shoes!).

After that I gave up on doctors because who wants to be humiliated by someone who is supposed to help you? I've recently started taking Feverfew but I don't know if it is helping though I know that some people swear by it. Guess I'll give it a try awhile longer before the verdict is in. I think what bothers me most about having migraines is that people who don't get them just don't under stand. They think an aspirin will make it go away or that you're a hypochondriac, are feeling sorry for yourself, want attention (If I want attention I don't need to throw up!) are crazy, etc. My husband tries to understand the best he can and I'm lucky in that. I'll be 38 in Sept. and thought that by now these "devils" would be less frequent or atleast less painful and not more...aren't they supposed to lessen as we age?? Is there a correlation between migraines and having high intelligence?? I know women get them more than men...is it hormonal then?? Do certain ethnic groups get more migraines than others because of diet or is that a dumb question?? Do people have specific personality traits that pre-dispose them to these headaches...(such as being high strung or sarcastic????) or is that another dumb question?? I try to have a pretty good sense of humor about it all and am determined to keep plugging along. This journal is wonderful, thanks Ronda, for having it and to everyone whos story I've read and who will read mine! I understand!

---Nadia (I think my computer is having a migraine...the words are all over the place!!!!) GTO400@worldnet.att.net

It's great to know there are fellow sufferers out there for whom the medical profession has not been able to provide much help. I have been seeing neurologists for 20 years yet still suffer full blown migraines 2 to 3 times per week. I have tried every family of preventative: beta blockers, calcium channel blockers, anti-depressants, anti-histamines and anti-seizure drugs. The worst side effects were caused by the anti-seizure drugs which invariably created even more headaches! I am currently trying something called Remeron but find I can only tolerate a small portion of a tablet without getting a headache. I am writing because the only thing that has given me great relief over the years was periactin which I believe acts somehow on the serotonin. The problem was it caused a 30 lb weight gain in just a couple of months so I had to stop. Has anyone ever found a medication that works like periactin but without the weight gain problem? A pharmacist told me years ago to try Unisom which contains a rather unique antihistamine. My experience has been it works quite well on minor headaches but is not strong enough to tackle or prevent the big ones. Please email any suggestions to Gayle at gmmlaw@interaccess.com.

I appreciate the information you have here. It's been helpful to me. I've had migraines since I was a child, I am now 40. When I was a child we referred to them as "sick headaches" and they took the form of nausea, vomiting, and severe pain. I don't recall how they were treated. Then, as a teenager I quit having the vomiting but began having the "aura" along with slight nausea and sometimes pain. The "aura" usually lasts about an hour. I now have them anywhere from 5-10 times a year, and I know that is mild in comparison to so many other sufferers. I sometimes think they are related to allergies, like pollen, etc. If I take 2 Advil or 1 Sine-Aid and 1 Advil when I first start having the "aura", then I'll generally not have a severe headache, just a dull ache in the back of my head and I'll feel wiped out for about 24 hrs. Today, my migraines have taken on a new twist. I woke up with a large "blob" visual disturbance in my left eye only and it has not gone away the entire day. I've also had nausea and feel totally wiped out along with a dull headache. If anyone else has had the same experience, I would appreciate hearing from you.

---Marcia Mally@Prodigy.net

Dear Ronda,

After reading FAQ IV of Tim Wortley about cluster headaches I wrote him the following (maybe you are interested in it as well):

Dear sir,

With great interest I read your FAQ IV about cluster headaches, as I am a sufferer of the Horton Syndrom for more than 30 years now. This was diagnosed only about ten years ago, as my family doctor constantly confused it with migrain. The diagnosis was finally made by a neurologist, who

gave me little hope of any cure, although he assured me it would vanish around my 50th.

He prescribed prednisone (13 tablets to be taken at once), which made me cluster free for about a fortnight. Then during my holidays (I always have

my cluster periods in the summertime) it came back and although a Scottish doctor was so nice to give me prednisone again it seemed to have lost it's effectiveness. After that I experimented with little success with anti-depressiva.

Then, about seven years ago, it was brought to my attention that Enzymes could do the trick. I was not very optimistic, but as the saying in The Netherlands goes: if you don't shoot, you'll never hit. The cure consisted of 4 intramuscular injections a week, gradually reducing to 1 shot a week, during 4 months, every injection consisting of 2 ml Vasolastine and 2 ml Coliacron. (By the way: Coliacron is not allowed in Holland and I needed a special medical permission for it.)

The first week the headaches aggravated immensily, 8 to 10 attacks a day! The doctor had warned me for that, but the pain was so unbearable that I called him in total desperation, telling him that if this was to continue I would kill myself. He emphasized that this was to be expected and that I had to endure it. Furthermore he stressed again that all of it would be gone after a week.

To my utter astonishment he was completely right! After six days the attacks were gone completely and didn't return! Now, this all happened IN THE BEGINNING of the period that usually takes 4 or 5 months in my case, so I was absolutely certain that the headache hadn't disappear 'by itself'. It was amazing! I had to complete the course of treatment, but that, as you can imagine, didn't bother me a bit.

The headache still recurred every one or two years, but when I started injecting again it disappeared after approx. a week completely. I'm 55 now and in May the headaches started again. I did'nt go back to my doctor but used the stuff I still had from last year. This time the result was disappointing. I still have one attack a day, at night to be precise, but they are much more gentle than I was used to. Maybe the neurologist is right and it will all come to an end at a certain age?

Thank you for your interest,

---AWM Knop macknop@concepts.nl

Hi Ronda, I am writing this for my partner, who has been suffering from mild to severe headaches since March of this year. To be totally honest with you, I have only some of the information on how he has been suffe- ring. He will wake up with a headache, and go through the day at work with it, and return home and go to bed with it. The first doctor that he went to, his family physician, told him to "have sex", that might get rid of them...HA!!...then prescribed Depakote...now in reasearching that drug, it is used basically for those with seizures, and minor headaches, he has no history of seizures, and the drug worked for a bit, the pain subsided for a while, until mid July 97, when they became worse. The doctor referred him to a neurologist, and they did the MRI...and to our surprise, nothing showed up on it, I am the type of person, who NEEDS to have an explaination for what is going on with these headaches, my part- ner, however, is determined to live with the pain, and I have a very difficult time seeing him go through this. I have asked him to get a second opinion, and he has agreed, but only in three months from now. See, he went back to the neurologist earlier this month, and of course, nothing was found again. So the doctor upped the dosage of Depakote, from 250mg, to 750mg daily. Have you seen some of the side-effects of this medication? Let me tell you, CNS depression, Hyperammonemia, reduced spermatogenesiis and testicular atrophy, at doses greater than 200mg a day...HELLO...nausea, vomiting, and indigestion, diarrhea, abdominal cramps and constipation have been reported, increases in hair loss, weaknesses in the musculoskeletal, thrombocytopenia, petechiae, bruising, hematoma formation and frank hemorrhage, relative lymphocytosis and hypofibrinogenemia, leukopenia and eosinophilia, anemia and bone marrow suppresion have been reported. And the list goes on and on and on. Tell me this, why would a doctor prescribe such a drug to someone, with no case history of EVER having seizures? So, we are both learning to live with the headaches, and the loss of some of the activities we used to enjoy quite often. Until the next neurologist exam I guess there is nothing either of us can do about the situation, and after that, I will be forced to go with him to the neurologist, and give him my opinion on his prescriptions, and the results of that MRI. I believe that it is possible for the MRI to miss certain things, or objects that may be hidden in the brain, for example, on a health program, a young woman, mid 20's, was aging mentally, but not physically nothing showed on her MRI, until a doctor in California used a new procedure, which I cannot remember the name of, regardless, it required the use of what we call "virtual reality". He put on the glasses, she was slid into the middle of two machines...what they were, I can only guess....and surprise, they found a tumor, hidden inbetween a very hard to reach part of the brain. They wound up doing surgery on her that way, with "virtual reality", and she is now doing fine.

With all of these advances in medicine, why is it so hard for doctors to find a cure and a medication that will work for those who suffer from these and all types of headaches? Maybe one day we will find the truth, and stop paying these ridiculous prices for medications that don't work, and probably never did work, they were just a way for the doctors and the insurance companies to come together, to make a few bucks.

thank you for your time

---john speer speerj@usa.net