Does anyone have chronic migraines and I.C?

[Ellemma]

I have been ill for around 4 years now, age 36. By far my most troublesome symptoms are daily headache, at least 15 migraines a month, and interstitial cystitis. Also diagnosed with peripheral neuropathy. My illness began with severe joint pain and fatigue, about 6 months before the migraines began. I have had symptoms, like asthma and gastritis, that appeared, lasted around 6 months, and disappeared completely. Others, like joint pain, Insomnia, and aggravation by heat, have been around since the beginning. In the past two months I have been waking with complete numbness in one limb, sometimes also feeling very faint. Also troubling is increasing muscle rigidity in neck and shoulders, and inability to access full vocabulary, mistakingly using a word for one in some way similar ( i.e, similar or opposite meanings, sound alike). This happened at first only during migraine, but happens at any time now. I had an MRI of cervical and thoracic spine last week to look for lesions, no lesions, just bone spurs, so no ms, thankfully. Was also tested and neg for lupus 3 yrs ago. Does any of this sound familiar to anyone? Going to rheumatologist on the 26th. I was perfectly healthy till 32. Now I rarely go anywhere but the dr's office & pharmacy. I am so very very tired, and just want someone to tell me what is going on with my body. Best wishes and thank you!

[Ellemma]

Going in for Botox soon, I can't find receipt currently, but I will let you know whenever I get the info, wish me luck, 1st rheumatologist appt next week.

[sara12345]

I would be greatly interested in the other two drugs involved with your Botox.  Maybe they would help me. Or maybe you are already getting the nerve block and trigger point injections.

Thanks!

Sara

[Ellemma]

As always, thanks for the positive feedback. When I've looked at the receipt for the botox I've noticed they're also injecting two other drugs, and I do get shots in my trapezoids.. I'll have to find the receipt from the last round and see what the other drugs are, how much, etc. I think the opiate thing is a lot to do w living in a large city w a massive drug problem, you pretty much have to have a quick fix, like post surgery or be terminal to get them here.. That's everyone I know in this areas experience w opiates. Which ***** tremendously for those of us that would never abuse a script. Thanks for your time Sara!

[sara12345]

Ellemma,
So sorry to hear that you are still having 20+ migraines a month.  I have about 28 headaches a month, but most days they are mild because of all my treatments.  I really hope that you can get that prescription skin gel that I emailed to you.  It really does simmer down most of my headaches, leading to the mild ones.  I use it almost every day.

You are a wonder having not taken pain pills much.  I am surprised that your neuro won't give you opiates, because they break up the kind of pain pills to reduce the rebounds.  And the fiorcet is much more strictly limited by two of my neurologists saying that I can't take it more than 2x/week without rebounds.  Whereas the opiates, in my case, Lorcet, can be taken more days without the rebounds.  I guess different neurologists have different views.

And I am so glad that you are getting Botox.  You are a perfect candidate for it having more than 15 headaches a month.  Remember to have your dose increased if it's not helping enough.  Can't remember what I wrote to you in our private postings, but my Botox was increased to 225 units which finally helped me much more.

Also, since you specifically mentioned "muscle rigidity in neck and shoulders", you should really look into nerve block injections and trigger point injections since that relaxes those muscles which greatly aggravate and cause the migraines.  

I'm rooting for you!!!

Sara

[achilles2]

I also have endo. Have you been checked for endo? I can always tell when my endo gets worse because my migraines increase in time and intensity.

Also has anyone checked your thyroid. (I mean a full thyroid panel-- Free T4, Free T3, TSH, thyroid antibodies. If so what were the actual results. Doctors are learning that the ranges are wrong. I was diagnosed with hypothyroid with a TSH 2.35. Also my present doctor looks at ratios as well and saw that my Free T3 to Free T3 was too high. So he changed my thyroid meds (I had armor) to one with just T4 hormone. My migraines got better. Also I stay away from synthroid, levoxyl, both have talc as an inert ingredient. Synthroid also has acacia wood dairy and some other things. Both talc and dairy cause migraines. (So you might want to check any meds you have and look at their inert ingredients.) The only thyroid med that I have found that I can take is tirosint-- it only has water, gelatin, and the thyroid homone.

[Ellemma]

Hi Sara,
I hope I didn't give bad info, or encourage anyone to take any pain meds unless needed.. I developed a pre ulcerous condition years ago, haven't hardly ever touched an NSAID  since, my personal situation, going several years w no pain meds for migraine at all EVER,just occasional rescue Triptan & topamax, and still having 20+ migraines a month has made me fan of fiorcet, bc my neuro doesn't give opiates for migraines. I still try to limit the fiorcet, but besides imitrex and Botox, it is all of the countless scripts I have tried that has helped. Of course, all pain meds have serious consequences, long and short term, and I think if ou can handle the pain at all, avoid all pain relievers. Besides the rebounds, there is the tolerance issues w triptans benzos and opiates, popping any of these drugs regularly has risks you need to be aware of.. This message is for everyone , I think Sara knows more than most and definitely more than me, she just touched on the topic& I wanted to clarify my feelings, thanks , best wishes

[Ellemma]

Forgot to mention, haven't taken a maxalt sinse I got my new neuro and went strict organic vegan w no grains for 8 weeks to look for food triggers, so far, only known triggers are drastic temp changes or storms hormone fluctuations, cig smoke, and alcohol- I appreciate you and your time!

[Ellemma]

Thanks for responding, can't believe someone else has chronic migraines & I   C, they're supposed to be linked, along w endometriosis and CFS and fibromyalgia .. I have never been big on diet sweeteners and haven't used any in years.. I appreciate you taking the time to help.

[sara12345]

And P.S.  I would not be able to get to Texas from Michigan.  Even short travel totally does me in.

[sara12345]

Terri,

That's a tremendous story.  Glad that you got such terrific help.  I am curious to know more about the DHE which I not heard of before.  I looked it up on-line and only got very brief descriptions of it being administered by IV, not as a prescription.  What do you use it for--just treating the acute migraine?  Does it come in a pill?

And also very interested in what preventative treatments/meds that you were given.  

This is the first time that I encountered anyone that actually got the biofeedback and had a good result from it.  I tried it for several sessions and gave up because it was expensive and my insurance wouldn't pay for it.  But maybe I should reconsider if you got a good result.

Such a different experience than I had at the nationally known Headache center in Ann Arbor, MI--Joel Saper's outfit.  What an expensive trip with no help whatsoever.  As my neurosurgeon (in the same geographic area) said, "Don't go there. Don't waste your money."

I would really really appreciate it if you would be willing to give me any more details of your experience there.  

Thanks so much.

Sara

[TSemler]

Hi Sara,
That's just what the hospital at the Diamond Headache Clinic gave me plus DHE drip everyday for 9 days there. And they were part of my prescriptions when I left. Have been on them for 8 yrs plus my other preventitives. Abortive and rescue drugs. They no there stuff, they are world renown for there work. I would recommend them to any one that feels they can't find the help they need. They also teach bio feedback which is fantastic!

I did not do the research on the magnesium that u did, I guess I believed they know what they r doing. But will now do the research.

Thanks for the info!

Terri

[sara12345]

Two other things I forgot from the above:

-  physical therapy on my neck, shoulders and back as well as pt on my TMJ.  This helped my migraines too.

-Another one is IgG blood testing for food and other sensitivities which can cause migraines.  I don't know about food journals since it takes 4 weeks of avoiding a food to know if it's causing the migraines.  It didn't help me but totally eliminated someone else's daily migraines.

[sara12345]

I think that I addressed this issue in my private posting to you, but for everyone else--YES, I do think that bad headaches DESERVE PAIN KILLERS.  If you need them, you need them.  And the Fiorcet or Esgic is particularly bad for vicious rebounds, unlike opiate medications like Lorcet.  I never tell someone to just stop their pain pills.  This can be very DANGEROUS.

But if you're willing to try other treatments, such as prophylactic meds, nerve block injections, accupuncture, Botox, biofeedback you might not have migraines the rest of your life every day.  Also skin gels, Butran patch and nasal Lidocaine which treat migraines immediately, but do not cause rebounds because they mostly don't go into the blood stream, also prevent migraines from getting out of hand.  

I was on opiates and Tramadol 24/7 for the first 8 months after my stroke.  Then I got nerve block injections which initially completely took away my migraines.  Then Botox made me much better, along with the Petadolex, skin gel, nasal lidocaine and Butrans patch.  (I was not helped by the other remedies mentioned including all the prophylactic meds except for the herbal one.)  I put on the skin gel almost daily.    

Now I only get severe migraines 2x/week or less.  The other days my headaches are MILD.  

I have gotten the ER visits down to zero, except for the last time when my estrogen was mistakenly cut off which caused a migraine steadily for many days and included the ER.  I can't do much in a day and I need 10-12 hours of sleep since my stroke or the migraines get severe.  But I'm also very fortunate that I'm not paralyzed and not able to speak for the rest of my life, let alone dying.

This tremendous improvement was in someone who all the neurologists said was extremely difficult to treat because 1) the migraines were caused by a stroke and 2) they were daily.  Some said that I might have severe migraines for the rest of my life.  

So I am a walking miracle because I've been willing to TRY EVERYTHING.

So for all of you who are just looking for pain pills, where has it gotten you?  You have other choices to try.  They may not work and if so, leave me a posting for some advice.  Nothing is worse than a migraine.  No one deserves them.  I've said this posting rather harshly because I so care about all of you.

[achilles2]

The best that I have found is  Peter Gillihams Natural Calm. The cheapest place to get it vitacost:
http://www.vitacost.com/Peter-Gillham-Natural-Calm

It is very absorbable.

[sara12345]

I'm really interested in that you said they recommended magnesium oxide.  When I looked that up it said that the magnesium oxide does not absorb into the body nearly as well as other magnesium.   And it costs FAR MORE.  Have you any idea why the oxide version?

Thanks for any info that you may have.

Sara

[achilles2]

If you drink diet soda, chew sugarless gum, or eat other foods with artificial sweetener you might want to look at this:
http://www.aspartamekills.com/mpvalley/

(this goes for any artificial sweetener-- not just aspartame.

[achilles2]

I also have chronic migraines and I.C. the best magnesium supplement out there is Peter Gillihams Natural Calm. The cheapest place to get it vitacost:
http://www.vitacost.com/Peter-Gillham-Natural-Calm

Also with migraines and I.C. has anyone ever suggested endometriosis? Endometriosis and I.C. will many times go together. I have both and know someone else who also has both.

One other thing have you looked into a gluten free diet? I.C. is autoimmune and gluten increase inflammation. If you have issues to gluten it cause many of the same symptoms and cause other deficiencies other than magnesium such as b12, iron, and vit d. Do to the damage in the gut your body cannot absorb them.  Also maxalt has artificial sweeteners which is a huge migraine trigger.

I hope this helps,
achilles2

[sara12345]

To Ellemma,
My comments to you in our private discussion are based on appointments with 4 separate neurologists and 1 headache specialist -- all at the University of Michigan.  (Not counting the first bad neurologist that I had at another facility.)  So it's a lot of information.  Good luck.

[Ellemma]

Been off caffeine forever except what's in my fiorcet.. Going to neuro soon will ask about magnesium.. Was looking through my cabinet of supplements, found an old one I tried years ago that was sublingual magnesium , didn't work then, probably not strong enough, or not a good brand. Will keep u posted on magnesium after I go back to neuro.. Thank you!

[TSemler]

I also have had migraine for 8 yrs. chronic daily. I went to Chicago Diamond Headache Clinic, known world wide for their inpatient and outpatient work. Google them! I am from the pacific Nortwest and flew there and was hospitalized for 9 days. They helped me get my life back! But just wanted to me tion that they also started me on magnesium oxide (mag ox) 400 mg on e in a.m and once b4 bed. And detoxed off caffeine. No caffeine at all for migraines, unless in combination with your pain med. ( norgesic forte).  I hope this helps:)

[sara12345]

Thanks for responding back.  So many people don't.   That's why I would like to be "friends" with you so that the information that I give you will be private.  I can't figure out how to do that.  So either you ask me to be a friend or I'll ask the person who asked for me to be a friend how to do it.

Should be able to get back to you soon.

Sara

[Ellemma]

Dear Sara,
I read another post where you mentioned a topical prescription for pain on front of head - would you mind letting me know about the script, name dosage, anything would be helpful. I read how long and how often you have been having chronic migraines in same post, and I guess I am close to in your boat, 20-30 a month 3 yrs, 10- 15 a month w daily headaches now that I get Botox. On day 9 of a full blown migraine run and if you read the message where I go off about rebounds & fiorcet, I hope I did not seem rude or give offense, I am migrained out and not sleeping. Also, is the petadalox fairly widely available,really want to hunt that down. I feel like I shouldn't bother you about this, but I KNOW lots of people read your posts & would appreciate the name of the topical script. I really do thank you.

[Ellemma]

Thanks for the feedback, your advice has been helpful- I went years w/ no fiorcet midrin prodrin NSAIDs or even a Tylenol, just vary rare use of maxalt, was scared of the Triptan  rebound & my first two neuros never gave me anything but topamax & maxalt.. Within 2 months of my first migraine in 15 years, I was having a full blown migraine all but 2-3 days a month. My current dr is great, he got me in for Botox immediateley- The Botox has me down to about 10 full blown migraines and severe headaches the other days. I need to look into the petadalox, ASAP.  I've never heard of butrans, will mention it in my next visit. Thank you for your mentioning these treatments to me, believe me, I'm open to all. I do have a little bit diff view of rebounds for chronics, which I assume you are since you are eligible for Botox...Since I've had many more headaches a month w NO pain relievers, I don't worry to much about the rebound headache. My neuro is a headache specialist at Texas neurology, my first visit there he explained his view on the enflamed brain due to no pain relief,and said it was common for him to encourage triptans and drugs like fiorcet to be used frequently in cases like mine where my head is almost always aggravated by migraine. I know this view is unorthodox but I love Texas neurology, and would far & away recommend them to anyone in Texas or even out of state, I have met clients from all over the south west and south east. But I definitely do not encourage anyone to take more triptans or pain relievers w/o discussing w your dr, the rebound headaches are real, just not quit as much a factor when treating a patient w 15 or more migraines a month. If you are a chronic migraineur please talk to your dr about the ability to take more pain relieving drugs. Life w constant migraine is more torture than life, I believe we should be able to get relief however possible. And that goes for opiates too, it seems dr's will hardly prescribe them to patients in dire need, at least in Texas. I am glad this forum exists to help people get really informed about thir conditions and treatment options. Thank you for enduring this lengthy piece, sorry!

[sara12345]

I have had 6 neurologists in the last 3.5 years and have had the same reaction to every preventative medicine that I was given-- no help or bad side effects.  Except that an herbal medicine called Petadolex was the one thing that did give me some relief.  But I needed so much more help including nerve block and Botox injections.  Also I needed a 24/7 patch called Butrans which gives low levels of opiates.  Look into other treatments such as these plus accupuncture.  I was told that if I took Fiorcet more than 2x per week, it would give me rebound migraines.  So get whatever other help that you can besides the pills.  Migraines are quality of life killers.  I know.