Doctor wants to make changes....here we go again

I had my Botox and nerve blocks today. They were so, so painful. I cried for a full half hour while icing my face. The pain doc has a new found love of studying migraines and of course has run into the whole "less meds is best" theory. I will be stopping my ergotamine first, then working my way off of pain meds. I reminded him that I already had a 6-9 month period without any meds and that I nearly killed myself from the pain.

I don't believe he will leave me in pain, as he is a pain specialist, and I am actually open to giving it another try, as long as he treats me when I need it. Scary but what can I do, I am at his mercy.

Gosh how I hate that.. I HATE HATE HATE that!!!!!!!
I am so sorry Milo.
Really, why the heII can't they leave us alone, particularly if we find something that is working for us !?
They know nothing about the agony we are in -bottom line. Only WE know.

Doctors are supposed help us. Sometimes - most times- usually! it sounds like irony, only.

Risa

what can I do, I am at his mercy

Is that true? Do you really have no other recourse if this does not work out?

I really hope it is okay and he changes his mind if he sees you are in serious pain.
But if he doesn't, can you switch to a new doctor?

What was his response to your previous pain med break that both wasn't helpful and quite harmful? Trying the same thing and expecting a different result is quite dumb. I'm all for trying helpful suggestions, but if it wasn't helpful before, and there isn't evidence that something has changed (such as symptoms of rebound), why do it?

I'm curious if he gave you any true reasons to do it and explained what he hoped to accomplish...besides the general philosophy that pain meds are harmful to headache patients (which I have never believed to be true for the group of us who who gets daily or near daily moderate-severe pain).

I know there is a lot of talk going around on opiate hyperalgesia...basically a theory that in some patients who exhibit symptoms of tolerance (needing a higher dose for the same effect), it is not actually tolerance, but the body's response to the meds (creating more pain). They say that in those patients, decreasing the dose will actually decrease their pain.

This should be easy to identify though: if increasing your dose doesn't help the pain as expected. Thankfully this is something my current doctor thinks is rare. Others use it as an excuse to taper patients off their meds. Then once they are off them, they say oh look you can manage.

So you believe that he would start you on the meds again if it doesn't work? That has always been my fear if I was to try to taper off them for awhile, or even change something. I agree that often we are at our doctor's mercy. I know it took me years to find my current pain clinic. Thankfully everything has been working out well with them, but I know I'll probably reach a point with them eventually when they aren't comfortable to increase my dose any more, same as my last doctor.

So is the Botox helpful? I seem to remember you getting it regularly. I agree the injections can be quite painful. At least you were able to ice it right after though. Have you tried taking an anti inflammatory before hand? I've heard that can be helpful prior to injections, even if it normally wouldn't work for your head pain.

Don't be afraid to complain if it just isn't working. No reason to suffer needlessly. Even if you couldn't get in for an early appointment, at least have a call on record that it wasn't working (that way they can't say well you made it through the month at this lower dose, so why are you now saying you can't do it...etc).

Although my comments may seem to the contrary, I do actually believe that a med holiday can be good. That way you get a good idea of your baseline pain and what side effects you may have been having. It could rule out rebound too (although that is something I also believe isn't as common as some doctors think it is). It may even help decrease tolerance.

I just couldn't imagine functioning without my meds though, as I am used to having them now, and do remember how bad it was previously. Hang in there! Best wishes.

Thanks for understanding where I am at. It is hard to get people to understand the fear that goes through my mind when I even think about this. I was worried a while back already when he started getting more and more interested in migraine treatments. It's a double edged sword. I appreciate that he has an interest but always was waiting for him to get to the point where he started thinking like the masses. It was just a matter of time.

Feeling super defeated right now but it has been a very long week so I hope things cheer up when the pain from my injections decreases. I am smart enough to have a stockpile of meds, so I can do a proper wean. I don't think he will leave me hanging but who knows at this point.

Wow! This reminds me of when I was working in a hospital in Florida and dealing with insurance companies. It's about prejudices towards the elderly. Basically it goes like this, at a certain age people are no longer considered an "asset" to society, it starts around age 50-55. Certain medical treatments, surgeries and procedures are "denied" by insurance companies. The doctors who do not persue the insurance company to get a treatment that was denied for their patient will get a "kick back" incentive.

The older a person gets or the more Chronic their illness becomes, the less medical care they receive. The sooner those who are no longer contributing to society pass away, the less drag and debt will be placed on said society. That is the thought process behind all of this...insurance companies won't have to pay out, whether independent insurance or government insurance, no one wants to pay.

I think migrainuers fall in this group and this kind of thinking is far more prevelant than most of us want to believe.

Quite frankly, if I were in a position where my doctor wanted to remove medications that delivered help, I would deliver myself from that doctor.

I totally get the need to eliminate pain meds where possible, the toll on our liver and kidney's is deadly...however that doctor better have a plan in place to replace one pain med with something else. I have been near sucidial several times in the last month or so because of the "Monster" migraine. I dropped the xanax and I am glad I did, but boy I could sure use something to relax me when my nerves are shot from dealing with pain from hell.

I am wondering if cannibis helps. Has anyone got any information on migraine and using that? I know you can get it in pill form and I am thinking I may look into that.
Trinity

I totally get the need to eliminate pain meds where possible, the toll on our liver and kidney's is deadly...however that doctor better have a plan in place to replace one pain med with something else.

But that's just it - they 'better' don't have anything in place to replace, or even anything in place for the existing migraine treatment.
Or should I say "treatment", because let's face it - it's laughable this "treatment" we have. What and how exactly does it treat, lol
Triptans barely cover it.

The medical community attitude toward migraine treatment and migraineurs is pathetic. It's not enough they have no clue what is like
to suffer from migraine, how it affects the whole life of individual AND his/her family, social life, workplace etc
but the doctors actually "know" better than us what's helping us!

They have no clue of course but they know "better" and they will dictate what are we supposed to take, when and how much.
uggghh...

Risa

Sorry to hear Miles. What ergotamine are you using?

7777Trinity wrote:
I am wondering if cannibis helps. Has anyone got any information on migraine and using that? I know you can get it in pill form and I am thinking I may look into that.
Trinity

I was using it for a while as an abortitive and it was very effective for about 6 months. Then it stopped working - very typical for me w/ medications. Although CBD is the chemical in cannabis that ostensibly has pain relieving properties, I found that the CBD percentage was irrelevant and the high THC strains work best. Other migraineurs I've spoken to all agree.

Platy
Thanks for the info on that!
Trinity

Regarding c...It is worth trying, but I can say, for me it did not help and it caused a lot of anxiety. I Definitely think it is worth trying though, as you never know what ends up working.

My ergo was cafergot minus the caffeine and with gravel added, so really gravergol minus the caffeine. I got it compounded. The doctor was very specific about stopping it, so I have. I am worried about what happens when my pain meds run out and if he will keep ordering them or not. The ergo was being used a lot and he says it is really bad to use long term. He has spent quite a lot of time talking to other specialists before getting back to me on the ergo and I'm ok with stopping it, just scared that he wants me to stop everything and knowing it is not a solution. Ugh

Thought I'd update.

I have stopped all the ergo. I did take it twice when I had a shotgun migraine but that was weeks ago. I have also stopped one of the pain meds completely. I suffered a lot and had some pretty severe anxiety (which I don't normally get). The leg cramps and anxiety really sucked.

My head has been horrible and my headaches have increased. In only on one light pain med at night and I still take my sleep med. I have had such horrible migraines now that they keep me awake at night.

This really sucks.

I took imitrex out of desperation and it made me feel super sick. I won't be repeating that.

I hate this.

Ugh

EH, I have been studying ergotamines for 10 years as my primary preventative is Sansert and has been since 2002. Without it I have #10 headaches every other day with vomiting. I haven't vomited from a migraine since I started treatment with Sansert.

I have never seen a study indicating long-term negative effects of ergotamines. There are very few long term studies of anything. Most drug trials average one week. Anecdotal evidence builds up on heavily prescribed drugs. (That's the source for example of the warnings about teen suicide and depression on SSRI's.)

This guy sounds like a quack. In the real-life migraine support group I'm in, there is a zero tolerance policy for medical professionals who adopt the same attitudes about pain medications and our suffering that causes us so much grief from insurance companies, employers, even the people in our lives who care about us.

My advice? Do your own research on MOH and rebound and determine if you think your pain medications are complicating your headaches. Even if they are, there are ways to mitigate the problem, by rotating drug classes for example. But needlessly suffering head pain, anxiety and insomnia is not a healthy program.

My .02,

Platy

Re: imitrex,
well I don't have a very good reaction to it too, it does help M eventually
but I feel "weird" sometimes from it.
perhaps if you tried another triptan the outcome would be much, much better?

Risa

Ok, so here we are. I have made it through the wilderness...somehow I made it through....(can anyone tell that was a song lyric?) I am now on a very basic regimine of pain meds. I have my emtec with back up percocet and flexural. That is it. Well, unless you count the botox and steroids in the nerve blocks.

I made it to twelve weeks between injections which is AWESOME. I am planning to try to wean off the injections as they keep me very tied to that doctor. I would like to think that the removal of gluten from my diet is going to help and that I am on my way to less migraines. I suppose I could be going through menopause, which may also be helping, tough it seems a bit early for that.

Either way, I believe and have some hope...and that in itself feels good. I am going to beat this bastards one day....I promise you all!!!!!

One worry about ergots is vascular spams and constriction, especially coronary artery spasm. If you get any type of chest pain from the Ergots, stop and call your doctor. I suffer from coronary artery spasms, and well, it can kill you. Not all of these meds are the greatest on the body. But for those that feel better with the vasoconstriction, that's a plus.

PF

I use a vasoconstrictor too, some of us don't have a choice. I hate what it does to my body afterwards, having said that, I am grateful that it will kill the monster within 3 hours normally. I too have thought that it might kill me, chest pain, horrible weakness to the point I can't even get out of a chair. But what are the alternatives really?

I used to Xanax myself into oblivion and sleep for 16-24 hours straight to get through a migraine. Now it's Depakote for preventative...it doesn't prevent but has reduced them. Relpax the vasoconstrictor and Stadol NS when the monster is so horrific I can't wait 3 hours for the Relpax to kick in, or the Relpax couldn't kill it.

But all that said, 3 meds and only one a narcotic is better I guess.

Be sure to check the gluten status on your ergots...historically, it discovered as a fungus that grew on rye that caused miscarriages and hallucinations, if they're still growing it on rye, it might be a concern, since that's a gluten grain.

Little off topic, kewl link I found: http://www.huffingtonpost.com/2013/05/13/gluten-free-pet-peeves-what-not-to-say_n_3255122.html?utm_hp_ref=healthy-living

I have not had any ergots for a long time. I am happy to be just taking emtec for the most part. Today I am in a horrid state, the injections were killer and as usual, triggered a nasty shotgun migraine. I am always amazed at how many allergens are in our medications. There is often types of dairy too. I didn't know that ergots had a connection with glutens.

I think I have really come to understand that I have some as-of-yet-unidentified autoimmune disease that has a strong inflammatory response and that much of what ails me is of a result from that. It makes sense that I respond well to gluten free or paleo type diets because they are similar to inflammation diets (minus the meat but I am not much of a meat eater and have it maybe twice a week).

It is odd though, as I have done many elimination diets in the past without any positive results, so quite surprising that it is working a bit this time. Maybe I have been more committed and stayed on it longer? Who knows! But any positive, no matter how small, is a positive I'll take at this point in my suffering. Off to dose myself with some of my heavy hitters now.

Hang in there friends!

The huff post is funny. It made me laugh remembering what my sweet MIL made for me when I was visiting. She is very kind but has a rather limited understanding of wheat. On the first morning at her house she made breakfast with me in mind. She said "and we are having bagels so _______ can eat them...because they are boiled". She was so proud of herself and I simply didn't have the heart to tell her that boiling doesn't make the wheat disappear or become inactive...or whatever it was that her thought process was. lol

DH's family has struggled too, not realizing that if they use the BBQ grill to toast buns, you have to cook his burger/steak/whatever on foil. My family has tried so hard, but sometimes the littlest thing catch them.

They had made a Jamaican style jerk marinade, and loved the spice, and DH is very fond of spicy foods, so they offered another bottle of it to us. Mom's running down the list of ingredients, since we do that with any food they feed DH that I haven't OKed. Lemon juice, OK, soy sauce (the safe one we leave at their house), OK, spices, all safe, I've checked previously, jalapenos, OK....beer-NOPE. What?!? My folks had forgotten that beer is wheat based and not safe, they just thought DH didn't like beer, since he didn't drink it even before diagnosis.

Then they felt guilty for trying to give it to us. I've started working on them with don't feel guilty he/we can't eat it, we appreciate that you're trying and asking, so that we keep him gluten free.



changing subjects back to the ergotamine


OK, so it's only wikipedia, but they have decent general knowledge in a simple format:

Ergotamine: http://en.wikipedia.org/wiki/Ergotamine

"It is used medicinally for treatment of acute migraine attacks (sometimes in combination with caffeine). ... It was first isolated from the ergot fungus by Arthur Stoll at Sandoz in 1918 and marketed as Gynergen in 1921."

Ergot: http://en.wikipedia.org/wiki/Ergot

"This fungus grows on rye and related plants, and produces alkaloids that can cause ergotism in humans and other mammals who consume grains contaminated with its fruiting structure"