"Heal Your Heacache" - AWESOME! POWERFUL!

On the recommendation of a board member here, sorry but I can’t remember who lol, I bought this book and read it cover to cover last night. I am SO glad that I did. For the first time since this condition hit me, I don’t feel like I am completely victim to it and out of control. The doctor explains the mechanisms of migraines, the theories involved in its developement, and the wide array of symptoms it can cause. He also says that doctors who diagnose migraine “variants” are simply trying to get away from the conventional view of migraine with looking obvious lol. He says “migraine is migraine”. MAV, Tension headaches, sinus headaches, even regular headaches,…all migraine! And the symptoms produced depend on the site of the blood vessel dilation or constriction. If blood vessels to the eyes or inner ear are constricted, you get a feeling of fullness in the ears, sensivitiy to loud noises, sensitivity to bright light, dizziness, and so on. If the blood vessels in the head, neck or face are dilated, you can get the pounding headaches, facial pain, neck stiffness, and so on. It was very interesting to read about the mechanisms involved. Even though he fully admits that nobody really knows the full ins and outs of migraine, it doesn’t matter. His program, according to him, works!! There are 3 steps involved:

  1. Eliminate “quick fixes” such as exedrin, immitrex, and other drugs that cause blood vessel constriction initially and immediately, but cause “rebound” to occur. In other words, once the blood vessels are constricted, and the drugs wear off, the dilation comes back with avengence, often worse than before the med. This creates a viscous cycle which also makes the person resistant to preventative migraine meds.

  2. Step 2 involves cutting out all dietary triggers. MSG, caffeine, and certain amino acids are the culprits because they inflame blood vessels further, which contributes to what he calls the overall migraine “threshold”. He says that every human on the planet has a built in migraine threshold. As long as you are under the threshold, you do not experience symptoms. But once your “triggers” put you over this edge, you experience symptoms. Triggers can be stress, anxiety, depression, MSG, caffeine, certain amino acids, pressure changes with weather patterns, perfumes/chemicals, loud noises, bright lights, flashing lights, etc. Certain triggers are hard to avoid, but the dietary ones are completely under our control. He doesn’t seem to be such a proponent of stress/anxiety elimination since he feels that’s largely not possible, and doesn’t like the benzos and other anxiety drugs, but says that if you can reduce your stress load, this will reduce your trigger load, which will lower you below the threshold, and symptoms will go away. Anxiety, crying, depression, and stress, are often the triggers that put people over the edge, but aren’t necessarily the ones mostly responsible. It’s an overall “trigger load” that contributes to migraine. Once all dietary triggers are gone, and rebound meds are stopped, it could take 2 months to lower the trigger level.

  3. However, if this fails to lower the trigger load enough to bring you under the threshold, migraine preventatives can be used to RAISE your threshold, and reduce or eliminate symptoms. He goes through all the drugs, which ones are best to use for specific situations for each person, the dosages needed, even how to properly give the medicine its trial. He says a lot of meds fail not because the med doesn’t work, but because too high a starting dose is used, people stop meds due to initial side effects that often discipate with use, and because they are still using rebound drugs and have many triggers still afecting them. For example, the trycycline anti-depressants such as notriptyline, which is his favorite TAD due to the low amount of side-effects and sedation, is good for people who are already depressed, have anxiety, and insomnia. Verapamil is good for people already with high blood pressure, Depakote is good for people who are manic-depressive and have seizures or seizure-like activity in their brains, and on and on he goes. VERY informative.

He also goes through the many mis-diagnosis’s that people are often given, which are really nothing more than migraine. He also says that although you can be symptom-free for life, if you maintain yourself below your migraine threshold, symptoms can and will return when you exceed your threshold. He says this happens for a variety of reasons. He even gave exmaples of how people claimed to be doing well on a med, and then suddenly, after a few months, it stopped working. He says that often times, it’s not that the med stopped working. It’s that other triggers raised your trigger level above your threshold, even while on the medication. The medications are not a “cure-all”, or a guarantee to stop migraine. They are a tool to artificially raise your threshold, nothing more. Therefore, there is NO migraine “cure”, as all human beings have migraine mechanisms. However, some people just have incredibly high thresholds. Some poeple have very low thresholds. The key is to get your threshold higher than your trigger level.

Personally, I am getting RIGHT ON this program. I have already eliminated everying he says,…I am still taking my xanax when needed, but will most likely wean off that when I start notriptyline, which seems like the drug for me since I am depressed, have anxiety, and trouble sleeping. My brain-mapping shows seizure-like activity in my brain, so if this drug doesn’t work, depakote is my next choice if the doctor’s agree. I have also ordered, for what it’s worth, lucinda bassette’s “stress and anxiety” program for anxiety and depression. I might not be able to avoid stress and anxiety, but I can reduce my REACTION to it, which WILL lower my threshold. I am excited, as for the first time, I feel like there is something I can proactively DO about this, and that I am not simply a victim who is at the mercy of this thing. I am going to win!!! One way or another. It’s going to take time, and I know that. But I am in this for the long haul!!!

He also has a great idea, which I will mention here…he says exercise and sex are unfortunately triggers. However, he says one way to avoid the migraine sysmptoms of exercise/sex is to take a high dose (but safe) of ibprofen (up to 800mg) 30 minutes to 1 hour before exercise, and then again 4 hours later. This can abort the symptoms of increased dilation or constriction which causes our dizziness and other symptoms. I plan on giving it a try to see what happens.

Anyway, for me, this is quite exciting. If you have nothing good to say about the program, I would honestly prefer that you just not respond. I’m not interested in hearing how this has not worked for someone else. My guess is, if it didn’t work, you either continued to set off “triggers” you were unaware of, despite your use of meds, which kept you in your cycle of migraine. No offense to anyone, obviously, because I respect each and every one of you for the hardships you have all indured with this, and being only 3 months into this, I am very new, so I don’t know what it’s like to do this for the long haul. But to me, one thing is clear now…negativity will accomplish nothing, even when symptoms are at its worst, which for me, seems like the case right now. But even then, I am trying to look beyond this, and consider the likely possibility that I can get control of this because ultimately, it is ME who DOES have the control, not the migraine. When someone asks me what I have, for now on, I will be saying “migraine”, not MAV. That’s just me. That’s just my outlook on it. If your blood vessels are inflamed, dilated or constricted in only certain areas, you may not fit the profile of traditional migraine, but the cause is exactly the same. I believe that now. I look forward to getting control of this. And honestly, I’m not sure if I am going to start the preventative meds right now, or wait an additional 2 months on the diet/stress/anxiety reduction to see what happens. But the prescription is filled, and I have it just in case. I will be talking to my doctor about that until I am able to get into Johns’ Hopkins to see their headache guy. At least now, I am armed with powerful information I didn’t have before.

My only concern, is the impact of certain designer supplements on this condition, mainly the effects of Vitamin K (which I need for osteoporosis), grape seed extract (which is supposed to affect blood vessels to some capacity), and the effects of calcium/magnesium. He actually recommends a multivitamin, but warns against herbs, as they act as drugs as well. That’s all I have :slight_smile:

Rich

Hey Rich
Great stuff…good to hear that you feel positive and you’re goin’ for it! Tell me…the book ‘Heal Your Headache’, who is the author, I might try and order it myself? Sounds like great reading and your brief overview was terrific too. Even though you’re just 3 months into the ‘migraine’ thing, I think being armed with info is definitely empowering and gives you a sense of control, so all the best to you and wishing you much success. This board has been very enlightening for me and shared information is a very positive thing for us all, thanks for sharing this with us all :stuck_out_tongue: .
Judy

— Begin quote from "Rich1975"

If you have nothing good to say about the program, I would honestly prefer that you just not respond. I’m not interested in hearing how this has not worked for someone else. My guess is, if it didn’t work, you either continued to set off “triggers” you were unaware of, despite your use of meds, which kept you in your cycle of migraine. No offense to anyone. Rich

— End quote

Rich,

I am the one who recommended the book. Having said that, I would like to take issue with your request that you prefer that anyone who has nothing good to say about the program just not respond. Next, you go on to judge why they may still be suffering - “no offense.” BTW

This past week, you deleted a very lengthy, angry post, before it was read by most people, claiming that you were leaving this board, as you could not stand, anymore, reading a bunch of “horror stories” written by people who had declined into a stance of “acceptance” of their condition (paraphrase).

Even though I have found some of your posts offensive, I make no request as to how you respond to the long sufferings and hard work of the members of this board - that would be the job of the moderator. As this is a board for the sharing of information and experience, I, personally, would like to hear **anything and everything **others have to say about the buccholz program. I’m here to learn and to commune, not to criticize and control.

This forum has been a major part of my healing over the past year - I have found the input, positive and negative, of all of you invaluable.

Ever hear of the path being referred to as the razor’s edge? I think we’re on it. Be well,

Julie

Sorry Julie

Rich

Hi Rich-

I have to agree with Julie. All of us were in your shoes at one time or another. (New to the horrors of everything that goes along with Migraine.) But in reality, this IS a place for both negative and positive posts. It ISa place for all to learn from others experiences. You took Julie’s reply as a personal attack, and I think you were wrong in doing that.

I don’t think many people on this board consider “MAV” as a “separate condition”. I think that you have been thinking it is, and just discovered differently after reading the book. I would just about bet, most of us here refer to it on a day to day basis as migraine. (Its just very misunderstood by the “average joe” who thinks migraine only involves “head pain”). The one thing we all have in common here is dizziness / vertigo as migraine symptoms. (On the migraine boards, “head pain” seems to be the major symptom discussed).

No one here is attacking you personally. A positive attitude is definitely your biggest asset, however, you can’t expect to hear only success stories , here, or anywhere. It is very rare to hear someone say “I used to suffer with migraines, but not anymore”. Unfortunately, chances are you will have them for the rest of your life. Thats just the cold hard truth. The question is - how well can you “manage” them?

I don’t think anyone here is taking offense to your “new found” positive attitude. We all know how important it is, and we all know how hard it is at times to remain so.

If you are “still seeking advice from others” (as you say), you are in the right place. But if you can’t handle the negative stuff, well, I’m not so sure. I wish you well with your new program. I’ve been there and done it. I still do the “diet”. It’s unfortunate, I have alot of feedback for you, alot of things I could give you my opinion on. Alot of things I learned along the way, but they aren’t all good, so I personally will respect your wishes and remain quiet.

Take Care Rich-

Kim

Sorry about that then. I’m not looking to cause problems or make waves. I guess I just think differently. I really see no point to a negative reaction to an idea because that person may not have the same reaction. For example, if I say I was just given Elavil, and people chime in with posts like “elavil, what a joke. That made me so sick”. That’s not going to do so great for my psyche about sticking it out lol. The same can hold true for positive posts to I suppose, but at least with a positive post, the person might gain the foritude to see the course out and find out what works for that person. Sure, there’s a place for posting your reactions to medications, how you have done with your treatments, etc, but I would think that would be best suited as a stand-alone topic about your own personal experiences, not as a follow-up to someone else’s post, but maybe I’m over thinking it. Honestly, I mean no harm with that idea. I just want to keep the positiveness flowing. Sorry to all and Julie if I offended you. Believe me, I am not meaning it.

Rich

P.S, I just re-read a few of my posts where I did EXACTLY what I asked not to be done in my post. Boy, the brain fog can be stuipifying sometimes! Believe me, I am not “proud”, self-serving, or arrogant. When I’m wrong, I can say it. And I am. My emotions are all up in the air because of this. I really need to cool down if I am going to get control

Rich,
I’m going to agree with Julie and Kim: this board is for sharing experiences, and I would urge you to read the ground rules that Adam has posted on the main page.
You have made negative comments to other posters–along the lines of “it’s unacceptable that you continue to suffer”. Unpleasant, unfortunate–but “unacceptable” is a negative, judgmental comment.
You are new to this problem, and you are angry and frustrated, but this board is for sharing, not just posting what you want to hear/read. Making negative comments about other people is okay with you, but you demand that we not respond in a way that will bring you down. You’re violating Adam’s ground rules.
Most of us here have read Buccholz, most of us have read the articles that Adam posts, along with other articles.
You know Rich, we’re not uninformed, we have a chronic disease.
Would you demand that another chronic condition be unacceptable? Are asthma, multiple sclerosis, heart disease, cancer, diabetes, etc-- all unacceptable conditions for you? Would you demand that people with those conditions be cured?
Medications have different effects/responses for different people–especially when you are dealing with a neurologic condition. What works for one person, often doesn’t work for another. That’s why we share our experiences.
I read Buccholz and follow it, yet I have symptoms. That may be unacceptable to you, but it’s my reality. If you can’t understand/support that, then you miss the point of a group that is established to share and support.
Despite seeing the top experts in the field of otology, I have learned tremendous amount of information from this group. It’s because we pool our knowledge and discover that a lot of what our experts recommend is just their personal preference–and it varies considerably.
Having a chronic, relapsing/remitting condition that is difficult to diagnose and treat requires acceptance of our conditions and the uncertainty and variability of our conditions and our proposed treatments.
Demands that we censor ourselves or only post when we’re doing well or agree with you–well that’s just not the purpose of this forum.
Kira

Hi Rich,

I’m glad to hear that the book was a great read and you found it very informative and helpful so that you can start your program. I am also thinking about picking up a copy. I have to agree with some of the folks here that telling people you don’t want to hear any negative comments… is going to take away from this forum. There is a mixture of Postive and Negative stories/information at this forum and i find it All interesting. There have been medications and strategies that other members said that it did not work for them but i decided anyway to take a chance. I don’t always let that get in the way. It’s all about sharing our stories plus giving comfort, information and hope. What works for one person may not work for another. Many of us could be suffering from more than one illness?? For example…i may also have a form of Panic/Anxiety with Migraine…but it’s only a guess. Without going into too much of my personal life…i had an extremely difficult/dysfunctional family upbringing (Alcoholism/womanizing, parents fighting/arguing)…plus my mother’s suicide when i was 22 yrs old. So with that said…it’s possible that i was a perfect Candidate to come down with this complicated Migraine/dizzy condition?? There is alot we do know…but there is still more to learn. I have been dealing with this Migraine/dizzy condition for 15 years. Have been to numerous doctors…tried numerous medications…even quit my 20 year job with the phone company so that i could find a job with less stress. I have cut out much of the foods/drinks that aggravate the condition. I currently have much less stress in my life…most of the time get 7.5-8 hrs sleep. I am now taking much less medication compared to most of the 1990’s. I have made a fair amount of progress and i am thankful. But still not back to 100%. Some people are able to return to a sense of normalcy…while others do not… but continue to be hopeful. If and when you find a post that is personally bringing you down…just skip it and go on to the next comment from someone else. I have been with this forum for about a year or so and i have found it very helpful.

Thanks for sharing some of the highlights from the book.

Joe

Thanks guys. and yes, I know. I know what I did. I admited it. It won’t happen again

Rich

Hey Joe, in trying to get back to things here, I’m curious. You say that you have been suffering with this for 15 years, and that you are still not 100%. Understood. But would you say you are in the 90-95% area? I can’t imagine what you went through during all those years, and I am envious of your courage to continue. What a baby I am. 3 months and I’m ready to die here!! But perhaps it’s because I’m still in the acute stages here. I don’t know. but I find it encouraging that with your struggle after struggle, that you seem to be on at least the right course. I would kill for 90-95%. The numbers sound good, and if I’m right, what does that 5-10% loss for you entail. I am wondering what symptoms still remain for you that is holding you back from 100%. Thanks buddy. And sorry for the trouble, to everyone that is. I’m an emotional wreck. And with that, comes the foot in mouth syndrome. Im not normally like that

Rich

Hi Rich,

God how i wish i was in the 90-95% range…if i was i would be working full-time and making better money. I would say roughly i am about 50-60% better(but most days are closer to 50%)… I mean…there was a time when i was taking 7 tabs of Xanex per day…plus a stronger strength (0.5mg). Currently i take only one tab of Xanex per day and it’s the lowest strength available 0.25mg. I am battling not only this condition but another chronic illness…so you just learn your best to live with it…and hope for some good news in the medical community. You have to learn what are your limitations. Rich…you are not a baby. This is all new to you so your just going thru a difficult time trying to piece it all together…especially when the Silent Migraine type is more of a rare condition. It’s like your going thru Shock!

The symptoms that still remain are the throbbing inside my head plus the Tension is there too…mostly on the right side of my head. With these two symptoms…creates a Rocking Motion like feeling so that I feel that i’m moving… not the world around me. The motion is like little waves going every which way and sometimes it feels like a ping pong ball. this where the Xanex is my saving grace because it helps to keep me more calm and stationary. I feel confident enought to work part-time, go to a movie, concert, etc.

I’m not going to lie to you…it has been a struggle but you learn to manage it the best you can. Find all the things in your diet to cut out so that things will improve. For example…there was a time when i drank 4 cups of coffee per day. Now i consume about a 1/2 cup and only on weekends. I had a very stress related job at the Phone Company and took a severance pkg in 1999 after 20 years. If i didn’t…i felt deep inside that my days were numbered, particularly after 2 short-term disabilities and calling in sick a number of days. My boss turned on me. I have lost what i thought were very close friends over the years. Even my brother who passed away 2 years ago…at first he was compassionate but as the years went by he began to believe that i was a hypocondriac. We have an Invisible condition and for the most part people cannot see it.

In 1992 i was told by my therapist i have Panic Disorder. Then a few years later i was told i have Inner-ear Dysfunction with Anxiety. Another doctor thought i might also have a stubborn case of Benign Positional Vertigo so i had the Epley Maneurver done but not help. I was also told i might have Menieres but that turned out to be a definite NO. I have always been a bit more anxious than the average man…worry a little too much at times and use to take things too personal…more so when i was younger. If i could take it back i would have been more relaxed when i was stressed out with my work life as well as my personal life. I admire people who don’t let things bother them too much.

So that is basically it. I’m a surviver and you just have to keep up the hope! If you have some other questions…feel free to ask.

Joe

How old are you Joe? I’m 32, wondering if I am going to live until 33 lol. I am CAPABLE of getting up in the morning, and basically doing what I have to do all day, with just 0.25mg of xanax twice a day to keep me chilled, and this is without having gotten completely on the headache diet, and without any medication. If I could just get the appearance of all objects shifting to stop, I’d be 50% better right there. The other 50% is my inability to exert myself, and intoleration to motion with the visual symptoms. Starting on Elavil tomorrow since I am also anxious and depressed. Seems like a decent enough drug to try. My doctor prescribed 25mg but I am going to ask him if I can start at 10mg and work up more slowly. I’m not looking forward to the medication process but I certainly hope that I find the right drug or combination to get my life back. I wish I fully understood how all this happens. If it weren’t for my stress-induced breakdown, I don’t think this would have happened. I hope my brain chemistry can heal in time

Rich

Rich,

I am 55 yrs old (old enough to be your dad)…LOL…Your on a relatively small dosage of Xanex. I am sensitive to medication and you might be too. When you begin Elavil if 10mg is too much for you to handle for beginners…ask to start with 5mg and work your way up. Many of us with Migraine are very sensitive to medications…including myself.

There is a condition called Oscillopsia…you might want to google it and read the symptoms. I think what happens is when people look at things they look like there bouncing around. Does this happen? I forgot to tell you that over the 15 years a couple more things have gotten better. The Vertigo episodes have dropped off dramatically and the Brain Fog is somewhat less. But the Motion is what continues to be most bothersome.

Joe

Thanks Joe. Actually, I’ve been checked for oscillopsia. I don’t have it. That happens when there is a distrubance in the VOR reflex. Oscillopsia only happens when the head is actually moving. People have to come to a complete stop to read signs and the alike when outside. For me, and others I have spoken to, even when we are still, the world is moving around us. For all I know, this may be more of a “Mal Disembarkment” than MAV, but some of the symptoms seem to overlap.

I’m going to call my doctor back up today and see if he can prescribe a lower dose of Elavil. He gave me 25mg to start. Probably too much. i think the lowest tabs are 10mg so I could cut that in half I suppose. Thanks again buddy!

Rich

Rich…the tv show 20/20 aired an episode a number of months ago interviewing some women who have Mal de Debarquement and they described as their World is moving while they are stationary. As i have told you before…i am the opposite…I am moving while the world is for the most part still. Although there have been times where i feel like i’m walking on a waterbed. Another example of how i describe my Symptoms are…when you walk into the ocean where the water is about mid-chest deep…and you feel the little choppy waves moving into you from all sides…well that is what happens inside my head…along with throbbing and tension. If it gets out of control i can go into a panic attack. You mentioned that you personally had a Nervous Breakdown. I wonder if that is what initially brought it on or a number of stressful events thru your life that build up… and then the nervous breakdown was like the last straw?? I feel as though with all the trauma in childhood with a severe dysfunctional family…plus the suicide…then many years later having some serious difficulty with trying to learn a job and going home each night for 3 months feeling like i wasn’t grasping it…waking up at night with a tape going on in my head of some negative comments from other co-workers towards me…that i took so personal that possibly (can’t prove it) that was the last straw for me?? I have heard over and over again that Stress can bring on horrible illnesses to people. But remember…we still don’t know for sure if our stress actually caused it directly or in-directly. It’s only speculation. I actually tried Elavil last year and the doc wanted me to start on 10mg but i told him i would rather begin on 5mg.

Joe