Migraineurs Support User Group
Introduction and Questions
About This Group:

A place for migraineurs to discuss anything and everything related to migraines. Topic suggestions: Think of this as a support group for migraineurs. Reach out to group members when ever you need support. Give your support to fellow migraineurs. You, as a migraineur yourself, probably have a wealth of knowledge to share with others. The knowledge that you have could vastly improve the quality of life for another group member. Share share share! Discuss your current acute and preventative treatment plans. Ask others about their current acute and preventative treatment plans. Discuss past acute and preventative treatment plans as well... we can always learn something from what didn't work! Discuss your own personal tips and tricks for lessening the severity of acute migraine attacks. Post about your upcoming GP or Neurologist appointments. Ask other group members questions about what to expect and suggestions on how to prepare. Update fellow group members on your progress... both on set backs (so that we can provide support, suggestions and hope!) and on successes (so that we can congratulate you and so that you can provide other group members with hope!).

Founded by marileew on September 27, 2009
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Introduction and Questions

Hi all- thanks for the invite.  I'm a 33 year old female who has had migraines since I was a teenager.  The frequency as a teenager was with my monthly cycles.  Then after having my children they decreased to every couple of months but with a significant change of waking up after the migraine, the blood vessels in my eyes would be ruptured.  Not a pretty sight but the migraine was over.

Over the past several months, I have been getting them more frequently as in a couple of times a month and they would last for several days before breaking.  These I did not have the issues with the blood vessels in my eyes.

This last migraine began almost 6 weeks ago and while I can take medication that will reduce the severity (for instance, from an 8 to a 5-6) it hasn't broken.  I have had a CT scan as well as an MRI.  I have seen the neurologist and have had a sleep study.  The MRI showed 7 lesions, 6 of which are on the right which is where my migraine/pain is located.  I was diagnosed with severe RLS which was explained can affect my sleep and can make migraines worse.  He also is doing blood tests to rule out Lyme's disease, etc prior to doing a lumbar puncture to rule out MS.

It seems that I have tried everything under the sun to get relief and this is exhausting and frustrating as I hate how it affects my daily life.  When the pain is at its worst, I cannot put thoughts together or speak without sounding like I've been drinking.  I do not have high-blood pressure, cholesterol or other risk factors.

Has anyone else had these issues or a migraine that has lasted this long?  What was the outcome and what did you try?

Thanks- this came out more of a vent than I intended but I just want some relief.
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19 Comments
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768044_tn?1294227036
Hi cadmoff,

Thanks for joining! And, it is always alright to vent! Venting is healthy and we will always be here to listen and to show our support if you ever need to vent. We all understand about just wanting some relief.

Many people here experience daily migraine or status migrainosus, that is a migraine that will not go away. A status migrainosus is usually defined as any migraine that lasts for more than 72 hours, although a few of our forum members have suffered from status migrainosus for years or even most of their lives. So, yes, a few of our forum members have had migraines last for a very long time. If your migraine has lasted for 6 weeks straight and you have had absolutely no pain free time then you probably have what is called status migrainosus.

If you have had a daily chronic headache along with migraines most of the time during those 6 weeks you probably have chronic migraines with an underlying daily chronic headache (two different conditions), which is slightly different from status migrainosus. A chronic headache is a persistent daily chronic headache that can be caused by a vast number of things and chronic migraines are defined as 15 or more migraines a month. Quite a lot of our forum members suffer from chronic migraines, that is 15 or more migraines a month, and many of our forum members also suffer from comorbid daily chronic headaches. A comorbid daily chronic headache along with chronic migraine can sometimes be caused by the use of over-the-counter medications to treat the migraines as many over-the-counter medications are actually headache triggers or a daily chronic headache can be caused by getting into what is known as a "pain cycle" where the neurons in your brain start misfiring to signal that they are always in pain because of prolonged or numerous migraine attacks, basically, the neurons get stuck in "pain mode". Daily chronic headaches can also be caused by many many other things as well.

So, know that you are not alone!! You have friends here who understand!!

I used to have a chronic daily headache along with chronic migraines, although with preventative medication I got the chronic daily headache under control. I have yet to get the chronic migraines under control and I still get over 15 migraines a month, but my neurologist and I are working to find a treatment plan that works for me and I am very optimistic that I will find a successful treatment plan in the future.

The first line of treatment for status migrainosus is usually to get the patient out of pain as quickly as possible, and that is usually done in emergency care. Status migrainosus is considered an emergency medical condition and emergency medical attention is required. Often triptans are used and if triptans do not work, then other migraine medications such as antiemetics and pain killers are used, often given by IV. Also normal saline fluids are usually given by IV to replace any fluid that has been lost as a result of complications if the patient has been vomiting or experiencing nausea or is dehydrated. If emergency treatment fails, then the status migrainosus patient is often treated like a chronic migraine patient in terms of treatment. (so, if you have already been to emergency for this migraine, you are probably being treated like a chronic migraine patient now)

For uncomplicated cases of chronic migraines, where patients get 15 or more migraine attacks a month, the first line of treatment is usually preventative medication. There are three classes of daily preventative medication: antidepressants, anticonvulsants and beta blockers. Botox injections can also be given as a preventative treatment every three months. Many people also include supplements as part of their overall treatment plan and these supplements are usually: 400-600mg of Magnesium; 400mg of Vitamin B2; 300mg of Coenzyme Q10.

In the past these are the preventative medications that I have tried and stopped because I did not personally find them useful although I know many people who they were very useful for: amitriptyline and valproic acid. These are the acute migraine medications I have tried in the past but stopped taking: maxalt-mlt and axert. As an acute medication, I still have very good things to say about Maxalt-MLT.

My preventative treatment plan currently includes: Topamax (the anticonvulsant) and Nadolol (the Beta Blocker) and Botox Injections. I also take anywhere from 300mg to 600mg of Magnesium a day and 300mg of Coenzyme Q10.

My acute treatment plan is quite detailed. My first line of treatment for an acute attack is always Zomig Nasal Spray and I sometimes use Naproxen at the same time as the Zomig Nasal Spray. If the Zomig+Naproxen fails, then I will use an antiemetic called Metoclopramide. If that all fails, I will use a small dose of Hydromorphone. If that fails, I will then turn to my Imitrex Injection. The treatment plan is slightly different if the headache begins at a 9/10 level or if I am awoken by the headache, as then the headache will always be at a 9/10 level, then I will immediately use the Imitrex Injection and a muscle relaxant called lorazepam, if the Imitrex Injection fails then I will use everything I mentioned before in the same order but the Zomig (as it's not a good idea to mix triptans). My last option is to go to emergency if everything fails, and they have their own treatment plan they usually follow there and it's about always the same and similar to mine, except they use IV medications in larger doses instead of oral medications in small doses. And, basically the point of that is just to get me out of pain so that I am not at risk and so that I do not enter into a pain cycle, as pain cycles are difficult to break.

I get blood shot eyes with some of my worst migraines. I think that it is more common with cluster headaches... but, it does happen with migraines too. It's always good to let your doctor know about this sort of thing, as it can be a sign of something more dangerous, but you have already let your doctor know about this and that is good you've done that.

Also, migraines can get worse and better and worse again during different periods of our life. Migraines often can change after something like child birth, as migraines are effected by hormones. So, that makes sense that they decreased after you had your children for a period of time. But, with time, they can come back again. Then, it is important to let your doctor know that your migraine pattern has changed again, and you did inform your doctor, so you are doing everything right!

I do not know about the lesions though. I do not know if those could be connected to the migraines at all or not. I know that any sort of a stress in the body can trigger migraines. But, also, abnormal results on an MRI do not always indicate disease, you would have to ask your neurologist to interpret these results for you.

Well, thanks again for joining! Keep us posted on everything you find out!
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764912_tn?1322715443
So sorry to hear how frustrating your situation is. :(  I feel drunk often too with my migraines and even to treat them it makes me woozy.  

Marileew covered all I can think of also.  Just don't give up, hang in there, document what works and keep asking question of others & your Dr.  You sure can vent or just talk it out with this group anytime!

Hugs,
Tracy
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1079216_tn?1258204405
Thanks for the reply.  The migraine has never been broken.  The meds have helped with the severity but I have not been pain free at all.  I've gone to the ER three times and again, the meds there helped the severity but did not get rid of the migraine completely.

I'm just so worried that something is really wrong...

I appreciate the support and letting me vent.
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1079216_tn?1258204405
Hi Tracy,

Thanks for the welcome.  It's pretty embarrassing to have the drunken migraine phase when its just the migraine...thank god my boss has been understanding. LOL

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1001420_tn?1281793049
I get my migraines a few days before my period. Its menstrual migraines, they last for 3-4 days. Once my period comes it goes away. I take MigraTen, it actually works. You have to start off with two then 1 every hour until it goes away. Each capsule is like 1 cup of coffee so I don't get any sleep for 4 days.....Ugh! It ***** but the migraine is gone. This is a montl;y cycle for me, so I try to catch it before it gets too worse, but I always misinterpret my migraines with headaches or sinus headaches and end up taking ibuprofen which makes migraines worse! So don't ever do that or you'll be sorry.....
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768044_tn?1294227036
Hi charmed6418,

Thanks for joining!

I have the same problem of sometimes thinking that my migraine is a different type of headache and then I will treat it with the wrong type of medication and the migraine just gets a whole lot worse!! My neurologist always says the same thing to me "it will be SO rare that any of your headaches will be something other than a migraine! always treat for a migraine!!!" but... then sometimes I really think it's something else and I will take something else and it will just get worse and then I'll realize it's obviously a migraine... I keep hoping that eventually it will get easier to tell what is what.

And yeah, I've completely stopped taking ibuprofen for ANY kind of headache. It can be good for some people who get migraines... but, for a lot of us, it's just not good at all and you are so right about how it can make things worse. So, now I only take it for non-migraine issues like if I have a fever or something... I am very careful to avoid advil because it caused me to get rebound headaches when I used to take it for my chronic migraines.

It is nice to meet you!! Thank you again for joining this group! :)

- marilee :)
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1079216_tn?1258204405
So just wanted to post that I had my last follow up with the neuro on Friday.  I seriously feel like I am going through hell.  

At the appt before this one, he switched my meds from the propanolol (which wasn't working) to neurotin.  I'm still on the Fioricet but due to the pain levels being uncontrolled, he's now put me on Fioricet with Codeine.  I'm also on Requip for my RLS and still doing the Imitrex which is the only thing we've found that even works somewhat.

I've had trouble sleeping...and when I manage to go to sleep I am now awaking after only a couple of hours to a bad migraine that I cannot get on top of.  I'm now vomiting with my migraines and have Zofran OTD to help.  The neuro has called me all weekend to keep checking on me.

The only thing the blood test showed was a slight B12 deficiency that I'm beginning the injections for in the morning...but I've been taking 6000mcg of B12 since my gastric bypass 4 years ago so he's concerned of what's causing the deficiency.

I had lumbar surgery in March and there are two things he's now isolating as a possible cause.  He's either thinking that its a build up of spinal fluid or MS....so I'm getting scheduled for a lumbar puncture with pressure testing this week.

So we're still on the search for the cause...which I really hope that we get an answer for soon.
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768044_tn?1294227036
Oh cadmoff, I'm so sorry to hear that things are so bad right now!!

At least you have switched medications now so you are off the old ones that weren't working, so maybe now the new ones will work. The Fioricet with Codeine should probably work better then the regular Fioricet, since Codeine is an opiate and opiates tend to be very strong pain killers. I hope that it works better for you than the regular Fioricet.

Neurotin is a very powerful pain preventative medication. I have never heard of anyone taking it for migraine prevention before, but I know that it works wonders for chronic pain... so I don't see why it couldn't work for migraine pain since chronic migraine pain is just another form of chronic pain I guess. And, as a chronic pain medication, I know that neurotin is an extremely powerful and useful so there should be a good chance that it will help with your pain. I will be thinking of you and I hope that it works well for you. Keep me posted on your progress with this!

What type of Imitrex do you use? Do you use the tablets, the nasal spray or the injection? If the Imitrex works somewhat for you and you've found that it is the only thing that works somewhat... then, depending on what form you take it in, it might work better in one of the different forms, unless you are already taking it by injection (as injection is the form that works best). The bioavailability of a medication will effect how well and how fast it works, and the differences between the routes of administration can sometimes dramatically effect the bioavailability of the medication and in the case of Imitrex, this is extremely the case. The bioavailability of the tablets and nasal spray is only 15%. Usually the bioavailability of a nasal spray will be higher than the bioavailability of a oral tablet, such as with the triptan Zomig, where the bioavailability of the oral tablets is 40% and the bioavailability of the nasal spray is 102% (when the bioavailability is higher than 100% it means that the medication by that route works better then it would by intravenous injection), although this sort of increase between oral administration and nasal administration is not the case with Imitrex. BUT, the bioavailability of Imitrex injection is remarkably higher at 97%. Basically, Imitrex Injection (which is an easy to use subcutaneous injection pen, much like the sort of injection that diabetics give themselves) works just as well as Imitrex by intravenous injection like they would give you at the hospital. So, if you are not already using Imitrex Injection, I would highly recommend asking your neurologist about it.

I'm sorry to hear that you've starting vomiting with your migraines... I hate vomiting. But, I'm glad you have the zofran to help... I think it's important for us migraineurs to have an antiemetic on hand as well as our regular pain medication. The antiemetic that I use is Metoclopramide, because it can also help with migraine pain too for some reason... but I don't think it's as useful for stopping severe vomiting so it's good you have the zofran, I hope it works.

I used to get B12 shots, they really helped with my energy. And, a friend of mine with neuropathy has been getting B12 shots and it's been helping with her chronic pain I think. And, my family doctor who runs a pain clinic gives B12 shots to lots of his chronic pain patients and I think he told me that it really helps a lot of his patients with their chronic pain as well as their energy. So, I know the B12 shots will help in some way or another. I liked them anyway, they make you feel good for a while afterward anyway. :)

Let me know how the lumbar puncture goes and what you find out from it. I will be thinking about you and hoping that things get better for you very soon!  

- marilee
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1079216_tn?1258204405
Thanks Marilee-

I'm on the Imitrex injections when they're bad but I also have the imitrex pills if I can get on top of it quick enough.

I had the B12 this morning, they did a loading dose of 10,000mcg.  I am getting a little more pain relief with the change but honestly not much....

I just don't know where to turn or what to do anymore.

I guess we'll just have to wait for the spinal and see what happens.
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764912_tn?1322715443
Hi,
Hope that the B12 helps.  Does the Imitrex help?  Don't be shy if something isn't working let the dr's know.  I sure know how it feels not to know where to turn, I am still at Mayo clinic and it is going good so far.  

Remind me what preventative you take now?  And the Imitrex.  What preventatives have they tried?  So sorry I am repeating things probably but then I can think it out better.
Keep us posted,
Thinking of you.
Hugs --Tracy
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1079216_tn?1258204405
The Imitrex makes it bearable.  Nothing has taken it away completely though.  I have no problem letting them know.

I hope that you get some help with the Mayo clinic.

Now I'm on the preventative Neurotin for several reasons, I have RLS and this works for that as well as preventatives and chronic pain relief associated with it.  So far its working more than the other preventatives they've tried.  The previous ones were Depakote, Propanolol (made b/p way too low and didn't do anything) and an anti-depressant who's name escapes me at the moment.

In addition to the Imitrex, I'm on Fioricet with Codeine.  I've tried so many different migraine meds and the only one that has had any effect are the Imitrex and Fioricet.

Willing to listen to any suggestions.

Thanks for the thoughts and the hugs :-)
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1079216_tn?1258204405
I'm sitting in the waiting room as my spinal tap is being done today.  I'll keep you posted as to what I find out.

Thanks for all of the advice.
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768044_tn?1294227036
Thank you for the updates! I hope that everything goes okay. I will be thinking about you today and hoping that all goes well!

Will you find out the results soon or will it take some time for them to get back to you? Well, I will be checking back here to stay posted on what you find out.

- marilee
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1079216_tn?1258204405
Thanks for the well-wishes.  It went ok just and increase in pain level on headache and some residual soreness.  I hope to have the results in 5 days...we shall see.  In the meantime, got my latest labs back and almost all of the values are skewed. :-(

I'll have to post them tomorrow to get your take.  The only other lab pending is for multiple myeloma.  It wasn't back yet when I went today.

Just seems like so many possibilities.  On my labwork it had diagnosis of obstructive hydrocephalus...which this is the first I've heard that mentioned. Ugh.

Home on rest tomorrow and hoping for a good nights sleep.

Thanks for everything!
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1079216_tn?1258204405
Ok just posted this but had forgotten to login...

Any insight on these labs would be appreciated.

Low:
HGB
HCT
Lymph%
Mono%
Lymph ABS
EOS ABS
Nrbc Absolute

High:
Gran%
Gran ABS
MPV

Thanks!
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768044_tn?1294227036
Hi cadmoff!

I can't really be of much help with the lab results since I'm not a doctor and also since I don't know how to interpret lab results, sorry :(

But, I can let you know what some of those things are short for and what some of their normal ranges are (well the ones in percents anyway) so if you have the actual numbers with the results then you can see how far off of the normal range you are (as opposed to just "low" and "high"):

HGB is short for Hemoglobin. If you are very low, it might mean you are anemic and you might need to be treated for this... depending on how low you are, home treatment can be a possibility and can include vitamin supplements such as Iron supplements and B12 supplements. Sometimes they will give you vitamin B12 shots instead of having you take pills.

HCT - this has to do with red blood cells. Being low in this can also mean you are anemic I think, but it can also mean other things too... but in order for it to be diagnostic of something, a doctor would have to take it into consideration with all the other numbers in your blood test. So, just knowing it is low doesn't tell much, a doctor would have to interpret the meaning of this I think.

The Lymph and Mono things both have to do with your white blood cells. They're short for Lymphocytes and Monocytes. I don't know what a low Lymph count would mean, a high count would mean infection but I don't know what a low one would mean or if it would mean anything. Sometimes a low lymph count can just mean you've had the common cold recently. There are some diseases like HIV that can lower lymph count but then it would probably be very low and your doctor would request more tests in that case to rule out such an infection if possible. The low mono might mean you've had the flu recently or it can indicate other disease but only your doctor would know if it was low enough to indicate a more serious disease than the flu and what sort of disease it could indicate in your situation. I really don't know for sure but I think that the normal range for the Lymph is somewhere between 17% and 40% and for the Mono somewhere between 3% and 10%... but those are just some rough estimates.

The EOS thing is another white blood cell thing too, but all I know is that if EOS is high that it can be bad and diagnostic sometimes, and I don't know at all what low EOS means or if it means anything at all. Again, I am just making a rough estimate, but I think the reference ranges are somewhere between 1% and 7% for the EOS number... although you have it in ABS (absolute) which means you probably want a number range but it would be hard to give you one without knowing what sort of units they're measuring in.

MPV stands for Mean Platelet Volume. That has to do with the platelet size of your blood. This can be diagnostic because the platelet size will increase when the body is making more platelets. I don't know what a high MPV could mean or if it could mean anything.

Anyway. I don't know what any of it means... like, diagnostic wise. I would have no idea what high or low counts would mean in terms of disease or illness. But, your doctor will be able to tell you. And sometimes low and high numbers on a regular blood panel like this won't be diagnostic of anything at all. But, your doctor will know for sure. :)
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1088430_tn?1259163373
Hi! I wanted to introduce myself. We are almost the same age (I'm 32) I'm truly sorry for all you've been through! I've been dealing with chronic headaches and migraines for about 6yrs. I've had my own hell, but have not gone through what you have. My heart goes out to you...MUST say something here about some of your meds that I feel is VERY important. You mentioned Fioricet. My primacry doc put me on that when he felt I was going through a bad cycle of "cluster headaches". They kept giong strong & my migraines even increased to 3-4 from 1 to 2 a day (no joke). Then, I had two diff. neurologists tell me that Fioricet is the #1 worse "headache" RX pain reliever for rebound headaches! For daily chronic headaches, I'm surprised to hear they gave you that. I went off very quickly and they replaced it with some other things and even though I still continued my daily headaches/migraines, they decreased off of it. I would def. try to take more Imitrex than it (BTW) even though it's more $$ b/c there is no generic; my neurologist also said that Relpax was the least likely of the triptons to cause "rebounds" than the others. Second best is Maxalt, then Imitrex. However, TOTALLY understand wanting the imitrex to pay generic price (: I'm glad to hear about Neurotin! I'm very newly taking (4 days into it) Fioricet; which is a close cousin of Neurotin.  I'm also taking Pamelor @ night for the nerve pain (this might be the anti-depressent that you mentioned didn't help you) I have nerve stuff going too, but limited to my head only. Past 4 days since on Lyrica, only one migraine and my head is less burny/hurty! And, was able to cut it off @ the right time w/ Maxalt. I'm even wearing a pony tail today! Couldn't tell you how long it's been since I could do that w/o my head feeling like it was split in 2 w/ a hammer hitting it (ha) That's amazing results for me! My mom has really bad RLS, I truly feel for you!!! There's nothing I could help with not having gone through your severity other than I would def. make warding rebound headaches off a priority. Try and do some reading on Fioricet if you can, maybe talk to the neurologist about it next time you see him. Pls continue to post and tell how your doing (:
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1079216_tn?1258204405
Hi Marileew, well I know what the lab results mean now lol as the neurologist called pretty quickly.  Nothing that can't be fixed of course but I'm severly anemic in addition to the B12 deficiency.  So now I'm on Iron supplements as well.  He is also upping my Synthroid dose as well.

While I was talking to him, I also asked about the 400-600mg of Magnesium; 400mg of Vitamin B2; 300mg of Coenzyme Q10. He was in favor of me giving this a try as well as he said that he's had some success with B2 and Magnesium.  He said that the Coenzyme Q10 can't hurt.  So I picked all of it up last night with my Iron he called in for me.  In addition, he's increasing the neurotin since it seems to be working and reducing the Fioricet.

We're still waiting on the two tests that he wants to see...same for me.  So the multiple myeloma and the MS screening is still pending.  The neuro called because he's going to be out of town for a week but wanted to let me know that his wonderful nurse is going to check in on me next week and that his partner is aware of what's going on.

In addition, he moved up my appointment to a week from Monday when he'll be back so that we can review the results of all of the tests.  
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1079216_tn?1258204405
Thanks for the post Tia, I did get to talk to my neurologist yesterday as he called about my lab tests that had come back so far.  I'm weaning off of the Fioricet and he's increasing the Neurotin since it is working.

I'm increasing to 900mg at night for a week and then to add 300mg in the morning as well after a week.  He's also increasing my Synthroid and adding Iron as I'm anemic as well despite being on Iron supplements...same thing with B12, I had been on the supplements but apparently they both took a nosedive and I'm now on B12 injections.  I haven't noticed much difference with the B12 injection like I hoped but perhaps it takes some time.  Or quite possibly its because I'm anemic as well that the fatigue was increased because of both.

I also started the B2, Magnesium and Coenzyme Q10 that Marileew suggested once I talked to him as he was in favor of it and said that he's seen some good results with the B2 and Magnesium and it certainly can't hurt.

I go back to see him a week from Monday as he is out of town next week (hence the reason for the call).  He said that we're going to retest to see how my B12 and Iron levels are then and if my Iron hasn't started going up that we'll probably do some iron infusions.

This sure is a long road to get to feeling better...but this place is wonderful to know that we aren't alone.  I don't have anyone in real life that I know goes through this.  I'm glad to know Lyrica is working for you though!
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