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Hemiplegic migraines?


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#1 cfranco92

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Posted 09 August 2012 - 03:53 AM

Hello fellow migraineurs,

I have been having hemiplegic migraines for a very long time. My symptoms include: severe, throbbing pain, usually on one side of my head, pins-and-needles feeling moving from my hand up my arm, numbness on one side of my body (arm, leg, one side of my face), visual aura, such as seeing zigzag lines, "seeing stars", olfactory aura, nausea and vomiting, and extreme sensitivity to light, sound, and smell. My migraines were very severe about three years ago in my junior year at high school, where i'd have to leave class and hide out in the library or go home for the rest of the day. I saw a neurologist and he put me on topamax, and he amped it up to 200mg. It was pretty controlled for a while so he reduced my dosage to 100mg where it stayed for about a year and a half. In march when I had my semi-annual check up, my neurologist wanted to wean me off of the topamax as I wasn't having anymore headaches. So I had a titration schedule that was fairly simple, but once I reached 50mg, all hell broke loose. Three years ago the left side of m y body went numb and limp and now it is the right side. I am having lots of aura (visual and olfactory), headaches everyday (waking up with a headache, going to sleep with a headache). I am having sensory overload and I am just getting overwhelmed by everything. I went to see the neurologist last Wednesday and he upped my dosage back to 125mg. It hasn't been working so far, but I will give it some time. He also gave me three alternatives: 1) add a muscle relaxer to the topamax, 2) see an anesthesiologist to do nerve blocking at the base of my skull, 3) botox.

Has anyone with hemiplegic migraines explored any of these options? The neurologist said we can try to go back up to 200mg of topamax before we try the other options.

oh, and any stories from fellow migraineurs (hemiplegic or not) are also welcome.

Dx: Schizoaffective disorder (bipolar type), PTSD, anxiety, hemiplegic migraines, asthma, hypothyroidism, tardive dyskinesia
Rx: Ativan 2mg PRN, Hydroxyzine 25mg PRN, Albuterol Inhalor
Past Rxs: Abilify, Saphris, Risperdal, Geodon, Lamictal, Prozac, Nortriptyline, Paxil, Pamelor, Celexa, Klonopin, Hydroxyzine, Propranolol, Bromocriptine, Zyprexa, Haldol, Invega, Clozaril, Lunesta, Ambien, Navane, Wellbutrin, Lithium, Seroquel, Cogentin, Verapamil, Trazadone, Latuda, Topamax, Synthyroid, Depakote, Zofran

I have been psych med free since 8/17/2013 as directed by my pdoc. 

A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us. - John Steinbeck.



#2 crtclms

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Posted 09 August 2012 - 05:37 AM

Do you have only hemiplegic migraines?

I have them in spates, they aren't the predominant type for me.

I've used botox. It helped, but not completely. I went down 5-6 headaches a week to 3-4 headaches a week. It's a reduction, I'm not complaining. Just don't expect it to be a silver bullet.

I tried Zonegran, which is a metabolite of Topamax, and my neuro insisted it worked, and I thought it didn't, plus it gave me gastro symptoms that he totally blew off. Then, we found out the Zonegran had damaged my kidneys. So since it is related to Topa, I can try it

I've never tried a muscle relaxant, what kind would they be talking about?

My new neuro mentioned a nerve block, but we are going to try a Dihydroergotamine drip first

Edited by crtclms, 09 August 2012 - 05:38 AM.

Dx: Bipolar 1; GAD; Migraine w/ Aura; Migraine w/o Aura; Renal Tubular Acidosis (caused by Zonegran); Status Migrainosus
Rx: Alprazolam; Botox; Buproprion; Dihydroergotomine via IV Infusion; Flexeril; Lamotrigine; Latuda; Lithium; Metoclopramide; Midrin; Migranal; Potassium Citrate; Prilosec; Promethazine; Riboflavin; Tizanidine; Verapamil; Vitamin D3
Currently Shelved: Abilify; Amerge; Anaprox; Atenolol; Buspar; Cafergot; Cymbalta; Depakote; Di-Hydro-ergotamine, injected; Gabapentin; Geodon; Imitrex Tablets; Klonopin; Maxalt; Namenda; Nortriptyline; Norvasc; Propranolol; Prozac; Risperidone; Relpax; Sansert; Sumatriptan injectables; Tegretol; Trazadone; Zoloft; Zolpidem; Zomig; Zonegran


Affectations can be dangerous. -Gertrude Stein

 

I moderate Bipolar, Panic/Anxiety, Dissociative Disorders, Migraine, Seizures, Not Otherwise Specified, Anticonvulsants, Side Effects, Family Feud, and I Still Have Issues. Remember, I am not a medical professional. PM me if you have any questions


#3 gizmo

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Posted 09 August 2012 - 12:31 PM

I've not had the body side effects like you experience. Also, most of my migraines start as stabbing, throbbing pain on one side of my head, but often migrate to both sides and even the back of my head.

I was on topamax for two years, increasing up to an end dose of 400mg a day) until it simply stopped working. It was a godsend while it worked.

I switched to depakote for a migraine preventative and. As a mood stabilizer so that I could try triptans. Unfortunately, I am one of those rare people who have a very bad reaction to triptans (it probably has a lot to do with the meds I take)

I currently take fioricet for migraine pain relief, but I need a lot of it (not good on my body) so I'm getting Botox on the 14th.


Diagnosis: BP I with Psychotic Features, GAD, ADHD, Chronic Migraines, various physical stuff.
Meds Currently On: Depakote 2000 mg, Risperdal 8 mg, Latuda 80 mg, Prozac 60 mg, Vyvanse 70 mg, Propranolol 40 mg BID, Klonopin 2 mg BID PRN
Meds Sort-Of Mental Related: Lipitor 40 mg, Zofran 4 mg PRN, Fioricet PRN, Stadol PRN, Botox received on 8/16/13

I post on an iPhone, so please forgive grammatical errors or strange word inclusions. It's the auto correct!

#4 crtclms

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Posted 09 August 2012 - 03:45 PM

Good luck with that, Gizmo. The night after I have the shots, when I put my head down on my pillow, it is like I can feel a little grid of pinpricks all over my skull. It doesn't hurt, just an odd sensation.

Dx: Bipolar 1; GAD; Migraine w/ Aura; Migraine w/o Aura; Renal Tubular Acidosis (caused by Zonegran); Status Migrainosus
Rx: Alprazolam; Botox; Buproprion; Dihydroergotomine via IV Infusion; Flexeril; Lamotrigine; Latuda; Lithium; Metoclopramide; Midrin; Migranal; Potassium Citrate; Prilosec; Promethazine; Riboflavin; Tizanidine; Verapamil; Vitamin D3
Currently Shelved: Abilify; Amerge; Anaprox; Atenolol; Buspar; Cafergot; Cymbalta; Depakote; Di-Hydro-ergotamine, injected; Gabapentin; Geodon; Imitrex Tablets; Klonopin; Maxalt; Namenda; Nortriptyline; Norvasc; Propranolol; Prozac; Risperidone; Relpax; Sansert; Sumatriptan injectables; Tegretol; Trazadone; Zoloft; Zolpidem; Zomig; Zonegran


Affectations can be dangerous. -Gertrude Stein

 

I moderate Bipolar, Panic/Anxiety, Dissociative Disorders, Migraine, Seizures, Not Otherwise Specified, Anticonvulsants, Side Effects, Family Feud, and I Still Have Issues. Remember, I am not a medical professional. PM me if you have any questions


#5 cfranco92

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Posted 10 August 2012 - 12:35 PM

Do you have only hemiplegic migraines?

I have them in spates, they aren't the predominant type for me.

I've used botox. It helped, but not completely. I went down 5-6 headaches a week to 3-4 headaches a week. It's a reduction, I'm not complaining. Just don't expect it to be a silver bullet.

I tried Zonegran, which is a metabolite of Topamax, and my neuro insisted it worked, and I thought it didn't, plus it gave me gastro symptoms that he totally blew off. Then, we found out the Zonegran had damaged my kidneys. So since it is related to Topa, I can try it

I've never tried a muscle relaxant, what kind would they be talking about?

My new neuro mentioned a nerve block, but we are going to try a Dihydroergotamine drip first


The majority of my migraines are hemiplegic. Sometimes I don't have the actual headache but I experience the numbness in my face, arm and leg. Same with aura, I'll have the aura without the actual headache. I am not sure what muscle relaxant he would give me, he just only mentioned it as the next course of action. I am hoping all we have to do is up the topamax because that has worked in the past. But the 200mg made me sleep walk and sleep eat among other things. He didn't mention the drip, maybe I should mention that to him before we do nerve blocking or botox? Maybe he suggest those first to me because I have hemiplegic migraines. Who knows.

I've not had the body side effects like you experience. Also, most of my migraines start as stabbing, throbbing pain on one side of my head, but often migrate to both sides and even the back of my head.

I was on topamax for two years, increasing up to an end dose of 400mg a day) until it simply stopped working. It was a godsend while it worked.

I switched to depakote for a migraine preventative and. As a mood stabilizer so that I could try triptans. Unfortunately, I am one of those rare people who have a very bad reaction to triptans (it probably has a lot to do with the meds I take)

I currently take fioricet for migraine pain relief, but I need a lot of it (not good on my body) so I'm getting Botox on the 14th.


Wow, thats a really high dosage of topamax! I used to take imitrex, but once I started taking lithium I had to stop. I also took Frova for a little while, but that was not helpful at all, because it works better if you take it when the headache starts, and for me I didn't want to take the 6 pill $60 med for just numbness on one side of the body when I didn't have an actual headache. My neuro prescribed pamelor once, and at the time I was Bipolar I and my psychiatrist chewed the hell out of my neuro's head off for putting me on a anti-depressant.

I hope the botox helps you. :)

Dx: Schizoaffective disorder (bipolar type), PTSD, anxiety, hemiplegic migraines, asthma, hypothyroidism, tardive dyskinesia
Rx: Ativan 2mg PRN, Hydroxyzine 25mg PRN, Albuterol Inhalor
Past Rxs: Abilify, Saphris, Risperdal, Geodon, Lamictal, Prozac, Nortriptyline, Paxil, Pamelor, Celexa, Klonopin, Hydroxyzine, Propranolol, Bromocriptine, Zyprexa, Haldol, Invega, Clozaril, Lunesta, Ambien, Navane, Wellbutrin, Lithium, Seroquel, Cogentin, Verapamil, Trazadone, Latuda, Topamax, Synthyroid, Depakote, Zofran

I have been psych med free since 8/17/2013 as directed by my pdoc. 

A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us. - John Steinbeck.


#6 crtclms

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Posted 10 August 2012 - 02:34 PM

cfranco, I don't know if you are at the point that you need a DHE drip (nor do I know that you are not, I'm just qualifying), but I am having it done at a pain center that I got referred to through my neurologist. It took about 2 years of pretty frequent migraines before I got to that point, but I probably could have made it about 6 months faster if I had pushed harder at Stanford (which is where I have ended up). It is hard to be resolute when your head constantly hurts, you know?

Botox is supposed to work really well for some people, but I have only met two who have had significant changes. Of course here, we are self-selected, so we tend to be worse off than the average migraineur.

Dx: Bipolar 1; GAD; Migraine w/ Aura; Migraine w/o Aura; Renal Tubular Acidosis (caused by Zonegran); Status Migrainosus
Rx: Alprazolam; Botox; Buproprion; Dihydroergotomine via IV Infusion; Flexeril; Lamotrigine; Latuda; Lithium; Metoclopramide; Midrin; Migranal; Potassium Citrate; Prilosec; Promethazine; Riboflavin; Tizanidine; Verapamil; Vitamin D3
Currently Shelved: Abilify; Amerge; Anaprox; Atenolol; Buspar; Cafergot; Cymbalta; Depakote; Di-Hydro-ergotamine, injected; Gabapentin; Geodon; Imitrex Tablets; Klonopin; Maxalt; Namenda; Nortriptyline; Norvasc; Propranolol; Prozac; Risperidone; Relpax; Sansert; Sumatriptan injectables; Tegretol; Trazadone; Zoloft; Zolpidem; Zomig; Zonegran


Affectations can be dangerous. -Gertrude Stein

 

I moderate Bipolar, Panic/Anxiety, Dissociative Disorders, Migraine, Seizures, Not Otherwise Specified, Anticonvulsants, Side Effects, Family Feud, and I Still Have Issues. Remember, I am not a medical professional. PM me if you have any questions


#7 cfranco92

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Posted 11 August 2012 - 03:54 PM

I always wait too long to tell the neuro what is going on with my headaches. We see each other about every 6 months, and I usually just wait instead of calling him immediately, which is probably why it has gotten so bad again. Who knows if I am at the stage of having a DHE drip, but I have been having migraines since I was 7 years old (so for about 13 years). I am also very familiar with Stanford, my mom goes to many clinics there. Maybe I will join her one day at their pain clinic.

Dx: Schizoaffective disorder (bipolar type), PTSD, anxiety, hemiplegic migraines, asthma, hypothyroidism, tardive dyskinesia
Rx: Ativan 2mg PRN, Hydroxyzine 25mg PRN, Albuterol Inhalor
Past Rxs: Abilify, Saphris, Risperdal, Geodon, Lamictal, Prozac, Nortriptyline, Paxil, Pamelor, Celexa, Klonopin, Hydroxyzine, Propranolol, Bromocriptine, Zyprexa, Haldol, Invega, Clozaril, Lunesta, Ambien, Navane, Wellbutrin, Lithium, Seroquel, Cogentin, Verapamil, Trazadone, Latuda, Topamax, Synthyroid, Depakote, Zofran

I have been psych med free since 8/17/2013 as directed by my pdoc. 

A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us. - John Steinbeck.


#8 cfranco92

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Posted 15 September 2012 - 11:09 PM

So I called the neurologist the other day because my symptoms were overwhelming, and he prescribed me Verapamil. Have any of you have had experience with this drug? All I know is its a calcium channel blocker.

Dx: Schizoaffective disorder (bipolar type), PTSD, anxiety, hemiplegic migraines, asthma, hypothyroidism, tardive dyskinesia
Rx: Ativan 2mg PRN, Hydroxyzine 25mg PRN, Albuterol Inhalor
Past Rxs: Abilify, Saphris, Risperdal, Geodon, Lamictal, Prozac, Nortriptyline, Paxil, Pamelor, Celexa, Klonopin, Hydroxyzine, Propranolol, Bromocriptine, Zyprexa, Haldol, Invega, Clozaril, Lunesta, Ambien, Navane, Wellbutrin, Lithium, Seroquel, Cogentin, Verapamil, Trazadone, Latuda, Topamax, Synthyroid, Depakote, Zofran

I have been psych med free since 8/17/2013 as directed by my pdoc. 

A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us. - John Steinbeck.


#9 crtclms

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Posted 16 September 2012 - 03:24 AM

I used it twice, and it worked well, until it pooped out. But I got about 3 years the first time i used it, and 18mo or so the second time. So definitely worth a try.

Dx: Bipolar 1; GAD; Migraine w/ Aura; Migraine w/o Aura; Renal Tubular Acidosis (caused by Zonegran); Status Migrainosus
Rx: Alprazolam; Botox; Buproprion; Dihydroergotomine via IV Infusion; Flexeril; Lamotrigine; Latuda; Lithium; Metoclopramide; Midrin; Migranal; Potassium Citrate; Prilosec; Promethazine; Riboflavin; Tizanidine; Verapamil; Vitamin D3
Currently Shelved: Abilify; Amerge; Anaprox; Atenolol; Buspar; Cafergot; Cymbalta; Depakote; Di-Hydro-ergotamine, injected; Gabapentin; Geodon; Imitrex Tablets; Klonopin; Maxalt; Namenda; Nortriptyline; Norvasc; Propranolol; Prozac; Risperidone; Relpax; Sansert; Sumatriptan injectables; Tegretol; Trazadone; Zoloft; Zolpidem; Zomig; Zonegran


Affectations can be dangerous. -Gertrude Stein

 

I moderate Bipolar, Panic/Anxiety, Dissociative Disorders, Migraine, Seizures, Not Otherwise Specified, Anticonvulsants, Side Effects, Family Feud, and I Still Have Issues. Remember, I am not a medical professional. PM me if you have any questions


#10 cfranco92

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Posted 17 September 2012 - 02:38 AM

I used it twice, and it worked well, until it pooped out. But I got about 3 years the first time i used it, and 18mo or so the second time. So definitely worth a try.


Wow, okay. That sounds promising. Were you taking any other medication? I am still on 125mg of Topiramate.

Dx: Schizoaffective disorder (bipolar type), PTSD, anxiety, hemiplegic migraines, asthma, hypothyroidism, tardive dyskinesia
Rx: Ativan 2mg PRN, Hydroxyzine 25mg PRN, Albuterol Inhalor
Past Rxs: Abilify, Saphris, Risperdal, Geodon, Lamictal, Prozac, Nortriptyline, Paxil, Pamelor, Celexa, Klonopin, Hydroxyzine, Propranolol, Bromocriptine, Zyprexa, Haldol, Invega, Clozaril, Lunesta, Ambien, Navane, Wellbutrin, Lithium, Seroquel, Cogentin, Verapamil, Trazadone, Latuda, Topamax, Synthyroid, Depakote, Zofran

I have been psych med free since 8/17/2013 as directed by my pdoc. 

A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us. - John Steinbeck.


#11 crtclms

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Posted 17 September 2012 - 04:16 PM

No, I can't use Topa. I used Zonegran, which is a metabolite of Topamax, and developed kidney disease. I've never done poly-pharmacy for migraines, unless one of my psych meds happened to help. But Depakote didn't affect my mood, just my head, head for instance, so I don't count that as poly-pharmacy.

My schedule has been changed, I was supposed to go in for the hospital DHE drip treatment this month, but now it looks like November or December. But after I do the drip, they are going to put me on Namenda as prophylaxis, which is an alzheimer's drug used off label. I of course will keep everyone filled in.

Dx: Bipolar 1; GAD; Migraine w/ Aura; Migraine w/o Aura; Renal Tubular Acidosis (caused by Zonegran); Status Migrainosus
Rx: Alprazolam; Botox; Buproprion; Dihydroergotomine via IV Infusion; Flexeril; Lamotrigine; Latuda; Lithium; Metoclopramide; Midrin; Migranal; Potassium Citrate; Prilosec; Promethazine; Riboflavin; Tizanidine; Verapamil; Vitamin D3
Currently Shelved: Abilify; Amerge; Anaprox; Atenolol; Buspar; Cafergot; Cymbalta; Depakote; Di-Hydro-ergotamine, injected; Gabapentin; Geodon; Imitrex Tablets; Klonopin; Maxalt; Namenda; Nortriptyline; Norvasc; Propranolol; Prozac; Risperidone; Relpax; Sansert; Sumatriptan injectables; Tegretol; Trazadone; Zoloft; Zolpidem; Zomig; Zonegran


Affectations can be dangerous. -Gertrude Stein

 

I moderate Bipolar, Panic/Anxiety, Dissociative Disorders, Migraine, Seizures, Not Otherwise Specified, Anticonvulsants, Side Effects, Family Feud, and I Still Have Issues. Remember, I am not a medical professional. PM me if you have any questions






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