Frustrated!

Specific Illnesses & Conditions VM/MAV
1

I am totally frustrated! I am an overachiever who has always been able to accomplish things with hard work and determination. This migraine thing and all of the conflicting information out there in the world is kicking my a**! I have been fighting this since October; I know that is a very short time compared to some of you, so I apologize if I am being a whiner - I just need to vent. I’m trying to do all the right things with my diet and prescribed meds while listening to my body, but I can’t seem to find a consistent pattern. Ugh!

I am stilling working full-time if you want to call it that. I have taken a lot of sick days, which is unusual for me, and when I am there I am not working to my usual level. I took this week off to try to get some work done around my house since my housework has suffered miserably through all this. It takes all the energy I have and then some just to survive through a day at the office. I was hopeful that the Topamax I added to the Verapamil 10 days ago would be helping enough to get me going. Well, the opposite is true at this point. I’m not really blaming the Topamax, but I’m feeling like I did back in the beginning with the dizziness, confusion, and a myriad of other symptoms. I think I moved up on the Topamax to 50 mg too fast even though that is where my neuro wanted to start me, so I skipped a dose last night. I feel slightly better today, but who knows if it is from skipping the dose or something else. I’m trying to figure out what to eat, but the migraine diets that are on the web and in the three books I have are contradictory on some of the foods, so I don’t know what the heck to eat.

Since I got my diagnosis and knew I didn’t have some life-threatening disease, I have been optimistic that I would find a way back to at least close to normal. I believe my optimism cracked yesterday when I couldn’t subtract 7 from 24 without a calculator (thanks to the Topamax I think). I am a CPA! They should take away my license. I have to teach an accounting class at a community college tomorrow night. How in the heck am I going to do that?

I just wish I had enough confidence in one specific diet and one specific medication to stick with it no matter how I feel knowing I will recover in the end. Unfortunately, there doesn’t seem to be a magic pill or a magic diet. Too much trial and error and too much impatience on my part.

Thanks for letting me vent. Any advice for getting through the down times would be appreciated. Also, how do you convince yourselves to stick with something such as a med or a dietary restriction when you don’t see any benefits right away? Or, as in my case, feel worse. I may feel worse because of other triggers (hormone, seasonal allergies, etc,), but it is so easy to blame the new med.

Marci

2

Marci … I tell ya … I’m right there, too. I could have written what you posted, word for word.

“Since I got my diagnosis and knew I didn’t have some life-threatening disease, I have been optimistic that I would find a way back to at least close to normal. I believe my optimism cracked yesterday when I couldn’t subtract 7 from 24 without a calculator (thanks to the Topamax I think). I am a CPA! They should take away my license. I have to teach an accounting class at a community college tomorrow night. How in the heck am I going to do that?
I just wish I had enough confidence in one specific diet and one specific medication to stick with it no matter how I feel knowing I will recover in the end. Unfortunately, there doesn’t seem to be a magic pill or a magic diet. Too much trial and error and too much impatience on my part.”

I can’t follow that stupid migraine diet! And most of this month I’ve felt like … well, like I have the devil’s own case of PMS. Made the mistake of drinking a cup of real coffee one morning last week & by noon I was sitting in front of my office computer weeping as if my best friend died. Sounds silly/funny right now, but it was horrible then … seems like life in general has been horrible for a long time even though I’ve only ‘been sick’ with this for less than a year. My job skills are suffering - the same way you feel like yours are. Thank goodness I’m alone in my office & my boss is stationed in Rome. He’s not due to visit me again until September, so I have until then to get … leveled out at least. I have absolutely no energy or enthusiasm at all.

I’m going to see my neurologist tomorrow. Ran out of Atenolol Sunday but didn’t re-fill the 'script until I find out if he thinks it’s doing any good. Personally, I can’t see that it’s helping. Either way, I need something to get me through this peri-menopause thing, regardless of migraine treatment. Prozac? Effexor?? Valium???

Encouragement … let me see … I’ve read that lots of people actually find the right drug or the right combination of drugs to make them feel almost normal. We’re in a different chapter of life now, I suppose, & we either accept it & make the best of it or … we sit around & feel miserable & not do anybody any good. It’s times like these when I miss my mother-in-law the most. She had the optimism of … … a super hero. She died in 2003, making lemonade outa lemons to the very end.

We’ve just gotta keep trying, Marci. We’ll figure it out eventually & settle down to our revised life-plan.

3

— Begin quote from “MarciM”

I am totally frustrated!

— End quote

I say that every day when I wake up and before I go to bed every night. :shock:

Heather

4

Guys,

The thing about the diet - i didn’t think it would help much, but i needed all the help i could help, so i stuck to it religiously. I couldn’t tell if it was making me feel any better, but I was also taking my first preventative at the same time. It takes months for the diet to even start working. I became a believer in the diet when i started adding things back and saw for sure they were making me worse. So little by little i’m finding my migraine triggers. I love to cook, so it wasn’t hard for me to find a really good migraine diet I could live with (i’ve posted recipes, but if you don’t like cooking, they won’t be helpful) - i’m telling you, it’s worth sticking to it if you want any relief, and my position is, any degree, even 5 degrees, of relief is worth it to me.

The thing about the meds, Topamax in particular, from information I’ve gathered from research and a best buddy psychopharmacologist, you’ve got to go real slow and easy. If you go up too quickly, you’ll miss the dose you need and your brain will hit you with intolerable SEs. If i had started at 25 like my doc wanted me to, i may have missed the improvement i got at 6 mg and i my have suffered SEs and bailed out. The other thing Marci is that Topa has caused me additional fatigue, so i take most of it a couple of hours before I go to bed. You can divide you dose. You can split your pills. Take a small amount of it in the morning and most of it at night. That should help the fatigue.

Topamax reaches steady state at 4 days, so i give it a full week to give it a chance to see if that’s the dose my brain needs.

(I’m going to add to something I originally said (below) - I don’t mind one bit telling the thornapple story again - i’m just sure people are tired of hearing about it and will skip the rest of my boring post :slight_smile:

Do I have to tell the thornapple story again? She missed her dose titrating up because she went too fast. She caught it tapering down and has, as far as I know, been there ever since, hopefully symptom-free. She hasn’t posted in a long time, so i assume she has gone on with her life. I could go into more detail, but her story taught me a valuable lesson in taking these neuro drugs, start very slowly, give them a chance to work before upping your dose. She said in one of her last posts “why take more?” MORE DOES NOT NECESSARILY MEAN BETTER. I had a long talk with my psychopharmacologist friend last night and he agrees with everything I just said. He thinks we are way over-medicated. Often Less is More. I was impressed when Hain suggested such low doses of Effexor to start.

If I ever get stable on Topamax i plan to come down on dosage of the rest of my cocktail, one at a time, and very slowly. My doc definitely thinks More is Better and kept pushing me up. I’m a migrainer, so by definition i’ve got a hypersensitive brain, right? I don’t need 75 mg of Zoloft. I’ve already come down from 2400 to 900 of Neurontin.

The hardest thing of all is realizing that this is a long road and will be filled with frustration. I’ve suffered for only 6 years, two of them housebound, one of them bedridden. I’m still mostly in the house, but I’m feeling normal and hopeful again - so hang in there.

I hope this was helpful.

Julie

5

Thanks, Julie. I appreciate your advice and support. Do you just follow the migraine diet in Buchholz’s book or do you follow something else? His is pretty straightforward and simple. I’ve found numerous variations and some of them are very long and detailed. I found some relief by accident by trying a low-carb diet. I originally thought it may have been the diuretic effect of the diet, but I am now wondering if maybe I have a gluten intolerance. I find the low-carb diet hard to stick to, especially if I can’t have cheese due to the migraine risk. I just don’t know if I should be avoiding more than what Buchholz lists or not.

As for the Topamax, what dosage are you on now? Are you still at 6 mg? Maybe that is my problem. My doctor told me to start at 50 mg once a day for a week and then add another 50 mg per day after that. I knew that was too fast, so I started at the normal beginning dose of 25 mg once a day for a week and then added another 25 mg. I took it all at night though because I was afraid of the fatigue. And I now know why they call it Dopamax! I’m not ready to give up on it yet, but I am still frustrated. I think I will try cutting it way down tonight and go very slowly like you are doing it.

6

I had to edit that damn thing, not only a little dopamax going on, but mostly, went to the dentist and i’m still having trouble with motion intolerance so i’m suffering with valium-stupidity. What I meant to say is MORE IS NOT NECESSARILY BETTER. Often, less is more. sorry - Jesh!

7

about the diet, yea, there are so many migraine trigger lists out there i thought i would starve to death if i followed all of them. I decided to simply stick to Buccholz’s list. I love carbs and i’m not a lover of protein, which is good, because if you’re at risk for kidney stones, (and let me know if you need to find info regarding that) you should not be on a high protein diet while on Topamax. I eat meat once a week. The rest is veggies and whole grains. If I think something is questionable on the Buccholz list, or not clear, i try to find out what the substance is that is the trigger, eg tyramine in beans and other foods. So if i want to use a certain bean, i research to see if it contains tyramine. It can be a lot of work in the beginning, but once you build a “database” you’re on your way.

About my Topamax titration, i started at 1/4 pill and got some relief on the 4th day. I stayed there for a week and plateaued, so i added 1/4 of a pill, same response each week. I get a little Dopa, but it’s fleeting. I’m at 25 mg now and plan on staying here for awhile to give it a chance. The reason I’m sticking with 25 for awhile is because i have a handful of doc appts in the next couple of weeks which means I’ll be adding Valium to the mix which will muddy the waters. Topa is not a drug i want to play around with lightly. I can wait before my next increase.

But please, i’m no doctor, don’t mess with your Topa without consulting with your doctor. I don’t know how long you’ve been on it, but it’s an AC, so you want to be careful about tapering down too quickly, if you should at all.

I really don’t mean to be giving advice about medications, I really should stick to just giving my experience. I’ll try to filter that out from now on.

Julie

8

Hi Guys-

Just one more thing real quick - (sorry, I’ve only got a minute right now - I can elaborate more a little later)

Marci - something I thought of when I read your post - try to be careful of how many things you are doing at one time, because when you do find something that works (no matter HOW small) its hard to pin down. For me, it happened to be the diet. (It took me almost a YEAR to figure the reason I was getting “some” results with the diet was because I’m so sensitive to MSG, and I wasn’t eliminating all of it (I just thought I was).

I know its frustrating. Hang in there. Hugs to you too Julie - sounds like you’ve had a rough day. :frowning:
Somebody remind me - we need to talk more about this PMS thing…

Anyway, thats all, just wanted to mention it. :lol:

Kim

9

— Begin quote from “AZdizzy”

Marci - something I thought of when I read your post - try to be careful of how many things you are doing at one time, because when you do find something that works (no matter HOW small) its hard to pin down.

— End quote

Yeah, I am very guilty of trying to do everything at once to solve a problem as fast as I can. I put everything I have into it. Unfortunately, this little life experience is teaching me that I am not always in control of the outcome. I can’t fix everything quickly, despite my efforts. I’m going to try to lock down my diet to a very limited routine safe list of foods for a while so I can take away that variable. Then I can try to slowly work on the meds one at a time. My main difficulty is that I am trying to live my life while this is all going on. I don’t know how or if I can slow down enough to recover. Or, can I recover while still plowing through my crazy life? I’m afraid if I slow down, I’ll never get started again. :?

10

Marci-

I look at anyone who can still work a full-time job with this God-awful condition with total respect and adoration!!! God Bless you!!!
In the beginning, when I was totally hit with this, I couldn’t work (I work for myself now, thankfully, when my bad days hit, I’ve only got myself to answer to). I give you so much credit for plugging through!!! Yes, you can do it.

For me, stress did me in, so go as easy on yourself as you can, while you’re figuring out all the other stuff. (Meds, diet, etc.)
Unfortunately, it does take time. Alot of it, but kudos to you for still being able to hold down a job! :smiley:

11

— Begin quote from “joy”

Marci … I tell ya … I’m right there, too. I could have written what you posted, word for word.

— End quote

Joy - it does sound like you and I are in about the same place with this. We are both struggling to keep working at an acceptable level. Luckily, my boss has been very understanding. He and a few others I work the closest with say they can tell if I’m having a bad day just by looking at me. They say I get really pale, I become more mechanical in my movements, and there is something about my eyes that is telling. Some days, I really struggle to concentrate. I am a CPA and I work as a business analyst doing a lot of number crunching and report writing. People are used to coming to me for answers. Now, I sometimes feel like my IQ has cut in half. I just want to have a clear head again.

You mentioned perimenopause. Do you mind saying how old you are? I know my hormone fluctuations around my period definitely set me off, but I don’t think it is perimenopause yet. I just turned 37 on Sunday. My 88-year-old mother-in-law is convinced it is “the change” causing me all this trouble. She has mild dementia, by the way. :wink: But, who knows. The ol’ lady might just know more than the experts.

Good luck at the neurologist tomorrow. Let us know what happens.

12

The difference betwen me having to walk with or without a cane is my estradiol level.
I’m using a cane today and I am off to go have my estradiol level pulled.
I can barely put one foot in front of the other today or even climb the stairs.
But I’m 46. My periods are all over the place. Went 7 months without one
and then Boom.

Find a doc who will let you pull your estradiol as much as you want.
Besides at your age, you need to get an idea what your body is capable of producing.
Estradiol and progesterone.
Pull your Estradiol around day 11 and pull your progesterone around day 20.
That’s if you are still having a period every 26-28 days.
You may as well pull your estradiol during menses as well, to see how low you go.

Heather

13

Thanks for the advice, Heather. I’ll talk to my GP about it when I see her next month.

14

Heather … I’m 47 & my gyno said I’ve just started peri-menopause. Nothing real drastic except for the mood swings. Feels like extreme PMS for about three weeks outa four. Never know from one month to the next what’s going to ‘show up’.

My neurologist is such a nice guy - Dr. Escandon with Barnes Jewish/West in west St. Louis county. I’d created this chart of every day since I started taking the Atenolol to show him how I was doing … Day 1 headache/dizzy, Day 2 slight headache, etc., etc. He said it helped a lot & to keep doing it. We stopped the Atenolol because it doesn’t seem to be helping. He gave me Effexor - 37.5 mg for the first week, then up to 75 mg for ~3 weeks. He said we can increase the dose if it seems like it might be helping. Hoping to kill two birds - migraine & peri-menopausal depression - with one stone.

15

Call me crazy but, for me, I would kill two birds with one stone with hormones, not an AD.
Women can get migraines and depression because of a hormonal imbalance.
Get to the root cause, rather than pulling weeds. (The root is still there even if you take an AD.)

Be well. :slight_smile:

Heather

16

Joy, keep us posted on that Effexor - Julie

17

Hi, I am perplexed about this topic.

I visited my primary last week and to put it mildly, she had a fit over the medications I am on.
I have a chronic pain situation and take Celebrex. I also take hormone replacement as well as Lyrica. She told me I was at a very high risk of stroke because of these drugs and I needed to come in for blood work. So, I did and my blood was fine except for cholesterol.
SO, today I went to the neuorologist with hopes of getting an MRI for my back but NO, he decreased the dosage of Lyrica but increased the frequency.
And yes there is a risk of stroke, great.
I brought up the whole MAV migraine idea and he actually said that this was too much to consider in a visit!

I discontinued hormones. I have cut back on celebrex. I am cooking much differently. My family occasionally wants to go out for dinner and I find myself saying no because of what might be in…anything. I still need tylenol at some point during the day or before bed but mostly for body/back pain.

So when you mention frustration, I am right there too, with occasional bursts of anger for good measure.

18

— Begin quote from “amberini”

Hi, I am perplexed about this topic.

I visited my primary last week and to put it mildly, she had a fit over the medications I am on.
I have a chronic pain situation and take Celebrex. I also take hormone replacement as well as Lyrica. She told me I was at a very high risk of stroke because of these drugs and I needed to come in for blood work. So, I did and my blood was fine except for cholesterol.
SO, today I went to the neuorologist with hopes of getting an MRI for my back but NO, he decreased the dosage of Lyrica but increased the frequency.
And yes there is a risk of stroke, great.
I brought up the whole MAV migraine idea and he actually said that this was too much to consider in a visit!

I discontinued hormones. I have cut back on celebrex. I am cooking much differently. My family occasionally wants to go out for dinner and I find myself saying no because of what might be in…anything. I still need tylenol at some point during the day or before bed but mostly for body/back pain.

So when you mention frustration, I am right there too, with occasional bursts of anger for good measure.

— End quote

I hear you! I feel the frustration often, with occasional anger and sometimes tears even though I’m not typically a crier. It sounds like you have a lot going on. Sometimes it seems as if my recovery is like putting together a jigsaw puzzle and just when I think I almost have it put together, I wake up in the morning to find someone has messed it up again.

When my neurologist diagnosed MAV, he advised me to never use hormone replacement therapy when the time comes because of the increased risk of stroke. We have an increased risk with the migraine alone, so the HRT increases that risk even more. I am not there yet though, so I can’t really speak to the cost vs. benefit of HRT.

Hang in there. I suggest letting the med changes settle and then get back into the neurologist if you think you have MAV. If you can relate to the symptoms of many of us here, there is certainly a possibility that is part of your problem. It sounds like you are on the right track by watching your diet. Are you following the migraine diet? It is very smart to avoid eating out as much as possible. I find I usually have a reaction when I eat out even though I order what I think are safe foods.

Good luck and we’re with you.

19

I have read the Heal your Headache 123 once. I feel I must read it several times to really get the gist of things. I recall after reading the first time feeling a little panicky over food choices. Cooking for my family and then myself is alot of work but it has to be done. I am trying to blend what they eat with what I can eat and then have the other stuff for them if they want/crave/need it.

I am shocked at all the products with MSG and trying to prepare nutritious meals with out it takes alot of creativity, something that in years past I had a lot of along with energy and stamina.
I did make my own beef broth yesterday, skimmed it and then made a large pot of vegetable beef barley soup.
That brings up another area, barley. I am trying to reduce the amount of gluten also.
So much revolves around food. Most social situations do for sure. I stay home most of the time because of feeling yucky, not being able to go out just makes it worse.

And to further complicate this whole situation, I only suspect migraine. I haven’t been watching food enough or anything else that could be a trigger but for a month. I am just suspicious especially after reading the book. I had a brain scan as part of Meniere’s testing, nothing showed up but I do have MM and have had it about 30 years. My mom died of a stroke at age 42, a very long time ago. Maybe there is some connection. I have toyed with the idea of writing Dr. Hain if he knows of someone in my area I could see. I even think of going to the Mayo Clinic but for what? And we are back to frustration. YIKES!

I saw a 20something in the mall and overheard her talking about having/getting/ a migraine as she ordered a large Starbucks. So, when she was closer to me, I excused myself to ask her a question. Bad move, should have been more careful about it. She copped a major attitude but then softened a bit.
Said hers ran in the family and only Imitrex worked. It was amazing to watch her brag as if it were a merit badge!
Got off topic there, anyway, time to work on dinner, ugh.

20

— Begin quote from “amberini”

I brought up the whole MAV migraine idea and he actually said that this was too much to consider in a visit!

— End quote

Tell your doc the money he charges is too much to consider. :smiley:

Heather