Migraine

I've been waiting and waiting to hear from the neuroendocrinologist, but I have not heard anything & even though my appt. is soon, I'm not terribly hopeful.

Recently, I had status migraine for 9 days and had to go to ER. The past several days I was hit with anouther whammy, even though my pain is a bit better from taking midrin and several ambienm just so I can shut up my head, but still feek spacey with tinnitus.

I haven't seen a neuro for about a year because my migraine specialist retired and I had no other regular neuro to deal with my migraines plus other unexplained neuro issues. I have gotten NO WHERE with any answers or any sort of treatment since I started evals 2 1/2 years ago. All that was said to me is maybe I have hemiplegic migraines or maybe basilar or maybe something else. Dependign oh who you ask, my MRIs and EEGS are either normal or not normal. Everyone says "its probably not this" or my symptoms seem "too complex" or that I am "too complex".

My therapist said she talked to the neuropsychiatry teem and they said I should go back to the epilepitologist to get treated for my migraines & unknown neuro symptoms. I don't understand because that doctor said I don't have seizurs and that the case was closed. She just said it sounded like a sleep disorder, but my sleep specialist said she couldn't figure out if it really was cause she couldn't figure out the cause of my symptoms & that I an still sleepy and have many symptoms despite APAP.

So I don't understand why they6 want me to go back to the epileptologist... she's just going to say I don't have epilepsy again and I am back to square one. I don't think she sees anyone with migraines or my kind of symptoms and don't need someone else to say "try Midrin & tylonal" when that barely touches upon helping my problems.

MY thrapist & BF say maybe try a different relationship with this seizure doctor, but I am hesitant becuase I don't get answers no one knows what is going on with me. Its a good thing that this is a research hospital but I feel like I am slpipping through the cracks. But I also am tired of seeing new doctors.

I feel like at this point what the point of seeing a neuro when it seems noone can figure out anything & it's just going to be some whild goose chase at best or end up developing more symptoms from a med I can't tolerate. I know it sounds pessimistic, but the last 2 & 1/2 years of my life have been horrid.

There are no doctors in the Bosto metro area???? I can only drive up to 30 minutes at a time or take public transport. Doctor has to accept state health insurance. I don't have any money as I am severely underemployed & on poverty level despite my education. Every doctor I had seen says I'm "too complex" & don't know what to do with me. :_(

I am feeling a bit frustrated with this whole process & all this time I have had no neuro & it's even a challenge to get in to see my GP at the hospital.

If anyone has any suggestions how to deal with this all, let me know.

Thanks.

So I am guessing 2 things:

No one on this list lives in Massachusetts.

No one has gone to a neuroloigist that has a different specialty than migraines?

At this point, I am seriously considering quitting going to neurologists and am looking into a alternative healer (psychic, reiki, massage therapy, rolfing) as I am thinking I might have better luck outside of western medicine if I can someone else to foot mi bill.

I have been very disappointed with my experiences with neurologists.

Sorry I live in VA not MA. I have yet to find a neurologist in my area that DOES migraines either, or has a clue. I am seeing an accupuncturist while I quest for conventional western medicine to go with it. It helps some, and my accupucnture guy actually listens to me. I'm coming to the belief that finding a neurologist with more than 2 brain cells takes some serious doing.

Amy

Alexandra,

There are two specialists in Massachusetts on our list of recommended specialists. They're both just less than an hour from Boston.

just to let you know, you are not the only one from MA. i live in Ma at least 9 months out of yr. possibly soon to be all yr round starting very soon. sorry i didn't catch your post sooner.

Alexandra,
You are not the only one in MA, I live right over the NH border, probably like 5 minutes. I've had migraine problems for the last year and I'm headed to my 3rd neuro/migraine specialist next month. The new guy I'm going to see is in Concord, NH which is probably a little far from you. I saw one in the Newburyport area, which will probably be my next stop if the doctor in Concord doesn't work for me. Not sure how far away that is for you though.

Best of luck in your dr search, I know it's a challenge.

Meli

Meli,

Are the doctors you've been seeing neurologists or Migraine specialists?

quote:

Originally posted by Meli:
Alexandra,
You are not the only one in MA, I live right over the NH border, probably like 5 minutes. I've had migraine problems for the last year and I'm headed to my 3rd neuro/migraine specialist next month. The new guy I'm going to see is in Concord, NH which is probably a little far from you. I saw one in the Newburyport area, which will probably be my next stop if the doctor in Concord doesn't work for me. Not sure how far away that is for you though.

Best of luck in your dr search, I know it's a challenge.

Meli

Terry,
The first doctor I saw was a neurologist. The 2nd one is a GP who claimed she specialized in migraines (she was helpful for awhile but seems to have thrown up her hands without much effort). This new doctor in Concord is supposed to be a neurologist and a migraine specialist. We'll see how that goes.

Meli

Meli,

I know how that goes. I've seen doctors who were SUPPOSED to be Migraine specialists but knew next to nothing about Migraine. That's exactly why no doctor makes it onto our listing of specialists unless he or she is recommended by their patients or by a specialist I know and whose judgment I trust. Have you looked on our listing? You can find it HERE.

quote:

Originally posted by Meli:
Terry,
The first doctor I saw was a neurologist. The 2nd one is a GP who claimed she specialized in migraines (she was helpful for awhile but seems to have thrown up her hands without much effort). This new doctor in Concord is supposed to be a neurologist and a migraine specialist. We'll see how that goes.

Meli

Hmm... the doctor out of Worcester is new since the last time I looked at the list... that's a little closer to me than Newburyport. I'm going to give this doctor in Concord a shot. If I don't get anywhere I'm definitely going to try out one of these two. The doctor I'm going to see next month is one that was recommended to me by the doctor I'm seeing now. We'll see how that goes.

I scheduled an appt w/Worcester, maybe they will hep, but I am hesitant for 2 reasons- it's a struggle for me to drive 15 minutes on some days, so the idea of driving (safely?) for an hour each way to a doctor is very daunting. On some days, (like today), I cannot drive ata all.

The other concern is meds- on the phone they asked if I was interested in a study where I would have ti take Topamax (that's a definate no!) & their policy is no narcotics whatsoever. I can't take NSAIDs or Triptans & tylonal is not effective for me. I don't like taking narcotics, but there are times when I have severe pain & have no other option.

Has anyone seen this clinic?

I briefly talked to the neuroendocrinologist, he said that my hormones widely fluctuated during my menstral cycle & one hormone that was supposed to be zero was very high. I don't know what that means. I was always told I can't take hormones because I am a very high stroke risk with the combo of my medical problems. I don't have an appointment with him until 3 months of now- it concerns me that this has been 6 additional montsh of no treatment.

Someone else recommended seeing a homeopathic doctor after I got very ill due to meditation. I am very tempted to focus on homeopathy & forget western stuff, since the doctors haven't done anything for me in the past several years & I really need help. It's really expensive though.

Has anyone been successiful with homeopathy?

There's nobody who can go with you and drive? It's really best to take someone with you, especially to your first appointment, so there are two people to remember everything that's said. Truly, an hour is an extremely short distance to travel to a specialist. It takes that long just to drive across most big cities.

As far as the study is concerned, if you're not interested, all you have to do is say so. Dr. Markley will not mind at all.

I have not been to that clinic, but I know Dr. Markley quite well.

quote:

Originally posted by Alexandra "Morpheus":
I scheduled an appt w/Worcester, maybe they will hep, but I am hesitant for 2 reasons- it's a struggle for me to drive 15 minutes on some days, so the idea of driving (safely?) for an hour each way to a doctor is very daunting. On some days, (like today), I cannot drive ata all.

The other concern is meds- on the phone they asked if I was interested in a study where I would have ti take Topamax (that's a definate no!) & their policy is no narcotics whatsoever. I can't take NSAIDs or Triptans & tylonal is not effective for me. I don't like taking narcotics, but there are times when I have severe pain & have no other option.

Has anyone seen this clinic?

I briefly talked to the neuroendocrinologist, he said that my hormones widely fluctuated during my menstral cycle & one hormone that was supposed to be zero was very high. I don't know what that means. I was always told I can't take hormones because I am a very high stroke risk with the combo of my medical problems. I don't have an appointment with him until 3 months of now- it concerns me that this has been 6 additional montsh of no treatment.

Someone else recommended seeing a homeopathic doctor after I got very ill due to meditation. I am very tempted to focus on homeopathy & forget western stuff, since the doctors haven't done anything for me in the past several years & I really need help. It's really expensive though.

Has anyone been successiful with homeopathy?

I have tried numerous homeopathic remedies with very little or no results. They range from accupucture, to herbs, vitamins, minerals, pinching certain nerves in the hands and feet and ,believe it or not, sticking my feet into a bucket of ice water. And, there were other things.

Since you're on a strict budget right now, you need to be aware of the fact that many of the homeopatic remedies can end up costing a lot of money and insurance does not pay for most of them.

For myself, the cheapest, nonmedical way to help with my migraines was through diet. Although, I still have a lot every month. The frequency and intensity did ease up a little.

But, finding a good migraine specialist is necessary.

There is a commuter rail line that goes from Boston out to Worcester. The Worcester station is about a mile from the office, it looks like - could always take a taxi from the train station to the doc's office if you had to.

Thanks for your responses...

I can't post that much anymore, because apparently I'm being moderated all of the sudden (not sure what i did wrong as I try to be polite & respectful despite pain, frustration & occasional confusion ???) & not all of my posts are going through.

I've done some homeopathic stuff on my own (and yes, even doing it on my own is not cheap) with little success. I've done the elimination diet with some success (no msg, aspirtene, smoked cheese, sulfites, yeast, dairy etc as I get very sick), magnesium, iron, flax seed oil & melatonin made me feel worse, still on primrose oil & multivitamins.

The times I have done meditation in the past couple years, I got very ill & would trigger episodes.

But I am very sensitive to meds, so I am hoping something else will help- since I have quite a few food & additive intolerances & allergies, I wouldn't be surprised if I have some food allergies & intolerances. I have asked my doctors quite a few times to test me for food allergies, wheat gluten intolerances & celiac, since it does run in my family & people with neuro issues have this tendency- but for some odd reason, my doctors seem reluctant to proceed with these tests.

I have also some major sensory issues that have gotten worse since my migraines & neuro issues got out of control- esp my sensitivity to light, high frequencies, vibrations & tactile issues to the point it affects my life. Every time I try to have a life & volunteer or be active, I get very ill. I was hoping that someone or something can help me with this as well- I can't even join a gym as I would bombarded & be triggered off.

I am really confused because my treatment team is now saying that I should not add another specialist- especially one who acts like a consultant- and just go with the neurologist (who initially felt all my tests were normal)... I was told that it isn't really necessary to have a specialist- that a regular neuro would be fine- that my symptoms aren't that unusual- but I am confused because then I am told my stuff is weird & not typical & they can't figure what is up with me.

The last neuro I saw (not the endocrinologist) thought I didn't have seizures, I was normal & that I was stressed & should try meditiation (I tried to explain altered states of consciousness make me ill!).

But I am not thrilled about seeing doctor after doctor esp when I easily get confused & overwhelmed & just want to shut down because of all of this.

hope this makes sense & gets throug.