Reaching the End of my Rope

I've been seeing my neurologist for 7 months. We've tried I don't know how many "preventatives" which have done nothing for the daily migraine and has been an all around disaster. I haven't had a break in over a year from the pain and symptoms. Often times, the doctor does a combo of drugs which often time ends in disaster. I'm very sensitive to medications and the side-effects are often intolerable. Or I've had drug interactions which make the M worse and I feel plain old awful.

For dealing with the pain and symptoms I have naproxen, compazine, gabapentin and imitrex. The naproxen and gabapentin I've been told not to take daily (although I'd like to). I'm given 8 imitrex for a month and the doctor doesn't like it if I use more than 4. The other thing is that it only gives relief for 3 hours (7 at absolute best).

At my last appointment my doctor told me he's running out of ideas. And when I called with my latest suspected preventative interaction, he tried to tell me it was minor and that I need to hang in there and trust him. Oh and here's some steroids because I was just in "a bad cycle". I went a bit ballistic on his poor nurse and he conceded that it was most likely an interaction. I'm only the patient and know nothing of course. Would love to transfer my pain to him for a day and see how he reacts to that.

I've had an MRI and a CAT and there is nothing physically abnormal from those.

Frankly, I'm at a loss of what to do. Right now, I don't think that the M are going to stop - which I've accepted. And what I want is a decent strategy for coping. I don't think the neurologist is going to go along with that - they are anti-pain medications, very concerned about MOH, and push "preventatives".

So the question is, what do I do? I can't keep going on like this but am afraid I'm trapped. The HA clinic doctors fall to the same basic theories of zilch for pain meds. Do I ask for a second opinion, go back to my gp or is there something else to try that hasn't been considered?

Please help.

Becky, here in UK as you know, we dont get access to many of the drugs you do there, as a matter of course.
So I can only offer you probably by comparison a limited bit of advice.

I said in another post, I need Triptans. I have had them all, and have stuck with Frova for 5 years.
The side effects are much less than others, for me, but also documented. They last a lot longer than all the others for me too.

You have probably picked up that I am sworn off preventatives too, and my neuro has suggested Q10, Magnesium or Butterbur.
Yes he is out of ideas as well, but perhaps a bit nicer about it.

I would advise you to try one of the non drug preventatives. Read up and decide if one of the other sounds acceptable.
None have an side effects for most people, but magnesium does play war with some peoples gut. Butterbur is being tried with some success by people on this forum. Check out the thread, perhaps it is worth you trying. It will NOT interact or make you ill.

And I would try another Triptan.....of course I would say Frova, because of the less side effects (for me it can be a bit of spaciness...and I mean a bit....sometimes, not every time at all, and for maybe an hour or so). (With Maxalt, which did work, once I had taken one, I slept, and that was my day over.....less pain, but no life....). Others on here would say another one I imagine. BUT Becky I understand the clinic are very good, but apparently not for you.

You are at the end of your tether..... untether yourself and try to see someone else.
I think you must. They are not all the same. I hope there is another GP or Neuro that you can see who will understand your plight, and not expect you to try to endure this day after day.

This my suggestion. I dont know how practical it is, but something has to change Becky, and quickly.
This is so bad for you, and if you dont find something at your young age, the future must look bleak.
And your doggies need you.

Please try to do something Becky. You have been a good friend to me.
I wish there was something I could do.....because of my own situation and the miles between us, this is all I can do.

Do take care.

Pen

Howdy

Several years ago, I was in your shoes. I sought treatment at a University neurology clinic at the urging of my Mom and Steve - the theory being that the medical interns and their supervisors would be better able to cure me than the neurologists I had seen. BUT the University staff did "not believe" in pain medications for migraine patients.

So I went back to my pain manager - neurologist and asked him to treat me ONLY for pain. I was up front with the University staff and asked them to provide treatment for everything else migraine-wise EXCEPT pain. It worked for me.

After several years with a very good resident-intern doctor under the supervision of a national migraine expert who I got to visit with, the intern was finishing with the program. Instead of breaking in someone new - we had already tried all the treatment protocols they had - I dropped the University hospital from my healthcare team and went back to my pain manager-neurologist for total migraine care.

Why can't you add a Board certified doctor in pain management to your healthcare team? What's to stop you?

hi there sorry to hear you are havin rough time, it is soul destroying isnt it, cant offer alot of advice, but will let you know that i am havin some success with beta blockers and amitriptyline, not pain free, but has knocked the strengh out of the M, i take 40mg of propanonol morning and late afternoon and then ami 50mg a couple of hours b4 bedtime, take care x

Thanks guys.

Pen...once I've cleared all the "junk" out of my system I'm going to look at butterbur. I tried Magnesium and my stomach didn't like the dose (wasn't high enough to be considered therapeutic) which was surprising but one more thing to rule out.

Richard...my problem is my health insurance is tied in with the University medical system. I know my current neuro would have a problem if I was on other pain meds and probably wouldn't continue treatment. I have an appointment next week with a PA associated with the clinic and if they have no other ideas other than pushing "preventatives" I'm dropping them.

This is not working for me. I'll find another neuro or see if my gp would be willing to oversee things or if he's not comfortable doing that if he'd have other suggestions. I've been thinking about a pain manager and need to check into whether any are neuros as well. That's one route I had been thinking of. One step at a time and next Wednesday I'll know more.

Thereasae...thanks for the suggestion but tried ami and don't tolerate it and beta blockers do nothing for me. Wish the bb would because they have zilch for side effects.

Becky,

You may have posted this in another thread, but have they tried the gabapentin as a preventative? I've never heard it used as an abortive.

I'm trying it for a second time as a preventative. The first time I couldn't handle the drowsiness while I was working, but since I'm not working now, that's not a problem. In fact, it has helped with my insomnia. I'm still waiting for it to make a difference in my pain level--I've been on it almost 4 weeks.

Just an idea. I don't even know yet if it is going to help me this time, but thought it might be worth looking into.

Keeping you in my thoughts and prayers. I know you've had a rough time.

Becky,

He doesn't want me using the gabapentin very often. What he's told me is that I'm supposed to take the naproxen and for those HA that won't go away to take the gabapentin but not for more than a couple days. Which is funny. Sort of like he's forgotten that I have these dang things every day oh and that he doesn't want me taking the naproxen more than 3 or 4 days a week at most.

See my frustration....no way to really deal with the pain. I'm about to have my coffee, medicate and if things get bad I'm bringing out the fioricet. He can be mad at me - if it gets rid of the pain for a couple of hours it's worth it.

Becky

Becky,

This is day two for this migraine. However, it has stayed at a level three. I do not get these week ones very often. When the bad ones hit, I now take Roxicet. It gets rid of the pain, but then I feel a little out of it for several hours or I will just take a long nap.

Hope you can find something that will break this cycle.

Hal

"once I've cleared all the "junk" out of my system I'm going to look at butterbur. I tried Magnesium and my stomach didn't like the dose (wasn't high enough to be considered therapeutic) which was surprising but one more thing to rule out."

becky, everyone above has suggested some really good things for you to think about. i just wanted to mention magnesium. nope, it didn't help me, but if you were able to take a high enough dose, maybe you'd be one of the success stories.

my suggestion is MAGNESIUM GLYCINATE. there are far fewer "gut issues" with this form. it's a bit more expensive than the other forms of mag, but worth a try? dianne

my suggestion is MAGNESIUM GLYCINATE. there are far fewer "gut issues" with this form. it's a bit more expensive than the other forms of mag, but worth a try? dianne

I've heard that too Dianne. As I have Fibro I am almost certainly low in Magnesium.
Just so sick of things upsetting my stomach/gut.

Might check it out though.

P

Thanks for the suggestions everyone. I feel a bit less hopeless. One of those things, I'm glad someone else has gone through this but also sad that they had to go through it.

The last thing (I can think of) that hasn't been checked is the pressure in my head. I'm a bit scared of an LP but if it rules out the last possible physical thing that is "common" then I at least know where I'm at. Sort of like when I went to an ENT. Sort of wanted there to be something - just to explain things but really didn't want them to find anything.

Otherwise I do think it's time to probably look for a different doctor.

Diane - thanks for the suggestion on the magnesium. I will definitely look into it. When I was taking it, it was on top of an anti-convulsant and those mess with my stomach something awful and I'm afraid now I'm a bit sensitive to anything that may cause upset. Did you find this online, a health store? Just wondering as I've only seen Magnesium Sulfate commonly. Which just had another duh moment...wonder if it wasn't the sulfate - I have a reaction to that as well.

I really appreciate all of you and taking time to read and give suggestions.

Becky

Hey Becky,

If a drug has a dismal potential side effect, I will get it. I took Richard's advice and with Cheryl's help I found a neuro who also specializes in pain management. Yes, we are still trying to find a preventative but the emphasis is on pain management.

When I went for my check up the Dr. (and I) was thrilled when he asked me how many days of work I missed because of HA and I was able to say "Only One!".

I don't say much to people about my pain management program, they don't "get it", but it has given me my life back.

PM me if you would like more details. This course of treatment is definitely worth the 3+ hour drive it takes to get to this specialist.

I have Chronic Daily Headache also. And migraine. No pain meds so far. I do what I can to cope. I take pleasure in the small things in life. There was a time I would not have noticed these small things. I give myself credit for any little thing I can get gone. You need to be your own cheerleader. I noticed recently that I am never outside. So I bought a loungechair for the balcony. (it's too diffcult to sit on a ordinary chair.) It helps just to be outside in nature. This is what I mean by a small thing. You need to really take notice of these ordinary things. It is definitely helpful. I think what I am saying is find what works for you. This is how it is. Look after yourself. No one else is going to do it for you. You're the one who knows what is best for you. Good luck.

Gail,

I do try to lead a normal life. I have a softball team that I play with once a week - they understand if I can't make it. Not a good idea to be playing with a quick moving ball if you can't see really well. I do try to do as much with the dogs as I can. I still do flyball with 2 of the 3 and love camping at the away tournaments. Attempt to walk most days (head and weather have been conspiring against me).

I try to do as much as I can and if it wasn't for my current job, I'd be in severe trouble. It's to the point where I'm so tired of being forced to work from home that I've thought about trying to start lining things up for disability. Right now, my employer is understanding and frankly don't care where I work as long as my stuff gets done. However, my job is only guaranteed for another 2 years at most. I'm funded on a federal grant.

Part of my problem is that things blow up into M everyday. I wish that it was just a HA. At least then I wouldn't have all the lovely M effects.

On another note. There is one doctor in my network that is board certified in pain management and neurology. If things don't go well at the next appointment I'm going to request to see him. I'm not sure what to do otherwise as there isn't anyone else with the right credentials...

Becky

Hi Becky, sorry you're having such a rough time, I empathise totally.

People have made good suggestions, I hope something may help you. I guess you've gone through all the triptans? Like Pen, I take Frovatriptan and although slow to work, it's long half-life does mean it hopefully lasts longer. Have you also considered the dreaded rebound. I know it's been talked to death but it's still out there and if you're taking tablets almost daily like I do, then it could be possible.

Hang on in there, there will be something out there to help.

Liz

Hi Liz,

Thanks for weighing in. I actually haven't tried other triptans but it's on my list of things to discuss. At my last appointment I mentioned that my triptan was only lasting 3 hours at best and the response I got was to take naproxen with it. Well I tried that and it lasts 7 hours at best with the combo. So it's not that the doctor is unaware of the problem and I'm going to request something else. If it's only lasting a few hours I think it's time for a different one.

Also, I don't take pills everyday. Most days I just suck it up and deal with it. I only take pills on the worst days. So for the last 3 days I've had to take something (the alternative was laying in the street waiting for traffic to run me over). The ones that I take the most are the anti-nausea just so I can sort of function. My point was, I'm in enough pain that I could justify taking pills everyday but I don't.

Not sure which is worse though - being in pain every day or the possibility of MOH? I wonder which is more detrimental to a person's health.

Thanks for sharing your thoughts.

Becky

I think Becky if you look at Dianne's example. I have no idea if she has any rebound problems or not.
I dont know if she would know, hopefully she will enlighten us.

BUT If the medication works, and you are in that much pain without it, and assuming you can get the script....
You must get to the point where you dont care if its rebound or whatever. If it stops the pain.

I am just playing devil's advocate, but I can see where, providing you get relief and come to no other harm
It might be better than looking longingly at buses and open windows from a great height........ ????

The whole triptan situation...I'd do it if I could get it out of my insurance and the neuro would agree. I'm not sure what the limit is on that but I'd do it if I could.

Also, the "pain" meds don't alleviate the pain. They just knock it down a level or 2. Sometimes that's enough, but often it's not. I took 300mg of gabapentin (much more and I'm not vertical) and a compazine this morning. The nausea is pretty well gone (was able to eat something other than cereal for lunch). However, my head is still splitting - it's just more of a dull splitting than a sharp one. That's the best it does. Another reason why I don't take it - it doesn't really work. I think I'm going to drag out the fioricet and see if that doesn't help a bit. The pain is getting harder and harder to take.

The last part made me laugh. I live on the second floor and really have no desire to jump. My luck, I'd only break a leg and be in more pain. And while there aren't buses in my community, I live less than a block from a semi trailer maker and there are constant semis going by taking the new trailers to their storage lot. I wouldn't do that but it is tempting.

The last part made me laugh. I live on the second floor and really have no desire to jump. My luck, I'd only break a leg and be in more pain. And while there aren't buses in my community, I live less than a block from a semi trailer maker and there are constant semis going by taking the new trailers to their storage lot. I wouldn't do that but it is tempting

Well if it made you laugh, it was worth writing my friend.

Becky, I can see why you want a new and different doctor. I hope you find the right fit, within your insurance limits. It's a big progressive city, and there has to be someone out there

You would think!

Cheryl

i have bought the magnesium glycinate only at a health food store. you could ask at a pharmacy, but i would tend to trust health food brands, as they have fewer fillers and other unnecessary crap in the pills.

as for me and rebounds. nope, don't have them. isn't that nice? i feel very fortunate indeed. dianne

.

as for me and rebounds. nope, don't have them. isn't that nice? i feel very fortunate indeed. dianne

That's great Dianne. Now how do you know please? Given you take triptans pretty much daily.
For the benefit of people like myself who often wonder from their own point of view....
And....given the different explanations about rebounds.
How do you tell what is another migraine, rather than a rebound...
I mean if you don't have them, why should I?

AND I ask this out of interest Dianne...NOT to challenge.
If I get a bad run, I often wonder. Then I get 5 days or more without and think....where's the rebound now?

What sayeth you??

i know i don't have rebounds because......drumroll.......there are occasional days when i don't have anything but a background headache. something i can ignore.

these days usually occur after a night of taking my magic sleeping drug, which is ativan (aka lorazepam), a very highly addictive drug. so i take it only twice/week. i used to take it every single night, and this was more than 13 years ago.

i'd hate for anyone else to get instantly dependent upon it, as i did. i was totally unable to sleep w/o it. not a good drug to get involved with, if a person has any other choices. i don't.

so i take it minimally, and pray that i don't get dependent on it again, even at this infrequent dosage.

so there you have it. we are all soooooo different! dianne

Hi Becky,
you have all my sympathy; it's incredible how this disease can overwhelm life...

20 years of migraine and too many doctors, tests, exams, preventatives, meds have been a waste of time. I am back at the beginning of my migraineur's career when I used to take abortives because I thought I had headache due to stress.

I have never tried all the available preventatives. I have been given only anti-depressants. All types of anti-depressants, despite I am not depressed
I've never been given beta blockers since my BP is quite low normally and neuros think that Topomax is for more serious migraine patients (I live in Europe, protocols are must stricter here).

Anti-depressants worsen my situation. Only Paxil had helped a bit in the past but the magic moment lasted only 3 months then my migraine adjusted to Paxil and I began to have bad spells again.

For the last 2 years, I don't want to hear about anything else but my only abortive: cafergot. It's hard stuff for the body, but migraine is harder so I don't care. My GP is a migraine sufferer and she agrees with my theory
I try NOT to abuse. I'm allowed 3 suppositories a week and most of the time I use 1 or 2 so I'm fine with it.

I have also abandoned the theory of trying to abort migraine at the onset through mild anti-inflammatories and then escalate to harder stuff. It works only in some cases and I am tired of wasting my daily life searching for something that helps.
I give a try only to paracetamol (tylenol in the US) in some cases, for example when I cannot take ergot immediately.

As for doctors, it can be helpful to hear a second opinion. There's also something new and a different point o view that can help....

Take care