New User - Hemiplegic Migraines - Need advice

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RhCh2010
New Member


Date Joined Jun 2013
Total Posts : 5
   Posted 7/22/2013 1:48 PM (GMT -6)   
Good afternoon all,
 
First, so glad I found a forum where others can understand what a migraine is, and how people suffer with them. Such a relief.
For me, I didn't get my first migraine until two years ago (when I was 33). I was at work, had had hazy vision for a while, then the small headache I had exploded and shortly after I lost all function in the right side of my body. I was sure that I was having a stroke so I was rushed downstairs to the ER (I work in a hospital) and put under "stroke protocol". I was admitted for a week, and after a stroke was ruled out by a Neurologist and a MRI, it was determined that I had suffered a hemiplegic migraine. I had never heard of this, but I found out later that it does run in my family. I was discharged home on Depakote, Immitrex, and Percocet if I had an acute migraine attack.
Two months later I had another one, although not quite as severe, and after four days of suffering with it (I didn't take the narcotic because I had read it caused rebound headaches), I finally called my Neurologist who sent me straight to the hospital. I was admitted for three days, and this time switched to Topamax.
After being on Topamax for a few weeks I found it caused horrible changes in me and I couldn't deal with the side effects and stopped the medication and was switched to a blood pressure medicine. But since my blood pressure already runs low, I found it dropped too much and I got hypotensive, so they had to stop that medication as well. Finally, I just stopped everything together as I felt the medications were doing more harm than good.
This was in early 2012. Since then, I had not had a mirgraine and have not been on anything preventive. Everything was fine until mid-June, when another bad hemiplegic episode hit. It hit on Thursday, but Monday when I still hadn't regained movement in my right side I went to the ER and they decided to admit me. Over the next four days they tried so many medications, even lidocaine injections in my head to break it up. By Friday afternoon I had gotten some use back and I was discharged home. By that Sunday everything had returned. I called my Neurologist who stated I needed to go back to the ER, which was a disaster. I'd go to the ER, be given meds that did nothing for me, then sent home. I'd follow up with my Neurologist who'd get upset and send me right back. This went on for four days until finally the last day my husband had a "private" converstaion with the ER doctor, who in turn called my Neurologist who admitted me immediately (Neurology couldn't direct admit me as I was a new patient for them, so I had to go through the ER to be admitted..if the ER had called my Neuro the first time, I would have been admitted right away). Finally, after three days they found the combination that worked...verapamil and dexamethazone. I had full function back by the time I left and have felt great the past month.
However, this morning I woke up and my vision was a little hazy. I thought it was because I had gone to bed late and gotten up early, but I've noticed throughout the day that it's gotten worse, my mind feels "jumbled", and I've got a headache starting. The pain isn't bad, maybe a 3 on a scale to 10, and I do have full function..but what are the chances I could have another episode so close to the last one?
I try to avoid all the triggers, including medications, to keep from having a rebound headache. I've got a call into my Neurologist to see what can be done as I refuse to go into a hospital again for this..
 
But from experience..can migraines, especially those that very severe, return so quickly? If so, does that mean my medications aren't working or that I have a trigger I didn't know I had?
 
Sorry for the long post, and any thoughts/advise are greatly appreciated.
 
 

RhCh2010
New Member


Date Joined Jun 2013
Total Posts : 5
   Posted 7/24/2013 9:26 AM (GMT -6)   
Just to update - saw my Neurologist yesterday. Was given shots of Zofran, Toradol and Immitrex; also had a nerve block done to see if it would break it up. He doubled my dosage of Verapamil (was on 80 mg every 12 hrs, now on 160 mg every 12 hrs); he did not want me to start back on steroids so soon as I had a very elevated white count when I was in the hospital and my BUN level was low, which he said was probably from the massive steroids given.
After my appt my head was numb for a couple hours, then it all came flooding back just as strong and now I'm having the right side weakness. Thankfully I can still function, but movement is slow and my right leg is starting to lag behind.
My Neurologist told me they have a 72 hr "golden rule". If, after 72 hours, my migraine is not gone or significantly improved, they will have to admit me and start me in IV medications to break it up. I'm not happy about this, but I don't know what else to do.
He suggested upping my dosage of Excedrin Migraine medicine, which I did last night but it made me so jittery that I couldn't sleep - not that it mattered as I tossed and turned all night becuase my head feels like it's being ripped in two.
So today I'm not taking any Excedrin as it didn't really help and I didn't like the jittery feeling it gave me.
Any other suggestions on what to try to break this up? After today I go into "status migranosus" mode. I am trying to avoid hospitalization, but I'm at a loss on what else I can do.

Any thoughts are appreciated.

Thanks!

RhCh2010
New Member


Date Joined Jun 2013
Total Posts : 5
   Posted 7/25/2013 11:26 AM (GMT -6)   
Well, on day 4 and the hemiplegia is kicking in. I had thought my headache was bad Mon and Tuesday but yesterday it went out of control. I work in a hospital and they were doing fire alarm tests. The sound of the alarms had me curling up in a ball in my office in the dark just crying for it to stop. Then I started having problems with my right arm and face. So far my leg is ok, no weakness, but my face is drooping and my arm is extremely weak. The pain, which before was a 10/10, is now 15/10 if that's even possible. I followed my Neurologist's advice and took additional Excedirn Migraine medicine, but the caffeine in it had me so jittery I couldn't sleep Tuesday night, between the jitters and the pain. I'm taking my increased dose of Verapamil, but so far it's not working.
I'm just over this already. I've made so many lifestyle changes to accomodate my brain that I feel like I'm depriving myself and not getting the supposed reward from it. I stopped smoking, took out sodas, never drank so didin't have to worry about that. But I also cut out anything with peanuts in it, chocolate, cheeses. I get massages regulary and exercise regulary to help deal with stress and to keep in shape. I try to be active and positive, but it seems like my brain is playing a cruel joke on me, because I'm in the same boat I was two years ago.
I take verapamil and this week the Excedrin, but other than a couple of Aleve here and there I don't take any meds.
Does anyone else feel like no matter how much they do right, Migraines still get the best of them?
I'm supposed to call my Neurologist today, and if my headache isn't gone I have to be re-admitted to the hospital. I honestly thought I would call and lie, telling them I was doing much better, but knowing my husband, he'd call my Neurologist himself because he knows I try to hide the pain for his sake and our kids' sake, and it costs me dearly. I would love nothing more than to lie in a dark room in absolute silence for a few hours, but that's impossible for me. Even at night, when it's just my husband and me in bed, I can't sleep because the pain is too intense, and I know that's only adding to the misery of my migraine.

Anyway, nothing constructive to say, just needed to vent as I am feeling completely overwhelmed and like there's no end in sight to this migraine attack.

Thanks for letting me vent!

cherluvya
New Member


Date Joined Aug 2011
Total Posts : 7
   Posted 9/9/2013 11:39 PM (GMT -6)   
I actually thought my headaches were very different. It began at the end of my treatment for cancer. My doctors said what I had was due to my bipolar issues and they wouldn't treat me or do further treatment until I finished with those sessions. I had already had hospitalizations. I moved to a bigger city. New Oncologist, GP and a Nerologist. I haven't met with the new nero doc yet...but both my doctors witnessed an episode. I had a terribleepisode at my onocologist office. He wasn't in reception were I was. I had four doctors and a least four nurses. They were inserting IVs and the pushed up a defibulater. I've had a migraine everyday since November 2010. My old doctors let it go to long...some of my body is now i have weakness in both legs, arms and middle because when I lay in bed I cannot turn over. My hands are bad again. These three doctors say they will find a way to an effective treatment.

I use to just get right side migraines with the Nero issues but now I have it worse on the left. My eyes are getting worse, it effects my hearing, the muscle spasms are wicked and I can't speak...very slurred speech that makes it impossible to be understood. My family doesn't really support me because they believed my old doctors. I swear having these migraines...and cancer...I will often have a pity party.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 9/10/2013 9:23 PM (GMT -6)   
Do you drink diet drinks? Chew gum? Mints? Eat sugar free or fat free foods? Is so you are probably ingesting a chemical, loosely labeled as an artificial sweetener - aspartame - another word for it is phenylalanine (found in 90% of gum, light yogurt, etc.). You need to read every single processed food and drink item you are buying now, to be sure it's not in them. This chemical hides behind a slew of other names. The reason I am asking you these questions is it's a very dangerous chemical/toxin, and can wreak havoc with the body, inducing 92 symptoms and side effects. Migraines and headaches, along with blurred vision are just some of the side effects. Google aspartame and you will quickly see how harmful it is.

If you are sure this is not in your system, then ignore this post. I have seen aspartame listed on foods you wouldn't think requires it - ie a high fiber, bran cereal with nuts and berries, the manufacturer used whole wheat products, etc. but then added aspartame? As if the wholesome ingredients would cancel out the harmfulness of aspartame. I don't think so.
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99, Cochlear Meniere's Disease
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Cholestyramine 1 T daily
- Eliminated aspartame, caffeine and alcohol from diet.

cherluvya
New Member


Date Joined Aug 2011
Total Posts : 7
   Posted 9/10/2013 10:32 PM (GMT -6)   
Hi Rh,

Here is what I have learned over the last three years:

1) Benidryl: I know it sound crazy...but take two 25mg (I will increase it to 100mg if the headache is moving too fast. I don't know why it does it...but it helps to block the pain.

2) Excedrin Migraine: All this is a combining of Asperin, Tylenol and Caffeine. The caffeine may work on regular headaches but NOT for HPM. Buy time released Tylenol...each tablet are 650 and released for the entire time. You can take up to 4000 which makes it great. It is not a Tylenol brand. It is called Up&Up. You should take a total of six pills. I have no idea with why this makes a different but it takes you to the taking time better. The second part of Excederin is Asperin. This use the brand name Bayer. Bayer Advanced Excedrin. They are 500mg pills...take two with the Tylenol.

3) What to take to boost your meds: my nero told me to take any and all of my anxiety pills too. I took Adavan for several years and I was just changed up to Zanax. I also take Sertaline. These two keep me from letting my migraine away.

4) migraine meds:
Clonidine 1mg x 2/day:
Amitriptyline 100mg at bedtime: later I'll talk ore abounit.
Lamotrigine 25mg...seizure med

5) What TO Do for the rest of my life. When i first wake up i strecth out on my bed and just listen for my migraine. Will it be right or left. I take my meds before I get up. I gave my Bug "sunshine" to my youngest daughter. I love that car and it makes me sad. I'm stranded...have to beg rides with friends and family. My docs were going to take my license so I'm better off...if I get better...I can drive against.

They also have migraine glasses. It takes care of the worst of the light issues. It was driving or going anywhere.

Cheryl

finst385
New Member


Date Joined Dec 2016
Total Posts : 1
   Posted 12/4/2016 5:58 PM (GMT -6)   
Hi to anyone who could help,

I'm currently waiting for an appointment with a neurologist to find out the problem with my symptoms. My symptoms are bang on with the symptoms of Hemiplegic Migraine but without full paralysis (at the moment) and I have very slight nausea and NO headache.

Approximately 3 years ago, I started off with just a weird shadow/glaze/distracting thing in the top left corner of my left eye which would come every so often. Then it increased to every day. Then all day every day. And now it is constant. I went to the optician (in October 2016) to see if there was anything effecting my eye but he found nothing and advised I see my GP. By the time I got to see the GP (30th Nov 2016), vertigo and lack of balance had kicked in as well as tingling in my fingers of both hands. He sent me for bloods that all came back fine and now I'm waiting for a Neurology appointment as my GP suggested it could be a rare type of migraine. On Friday (2nd Dec 2016) my left arm started going numb in addition to all my current symptoms.

Today (4th Dec 2016) my face is tingling and going numb and I still have the other symptoms. I obviously began to panic as I thought, at the very least I was having a TIA (mini stroke). As I'm constantly being told by my husband and my dad that I over-react with things, I decided to keep my symptoms to myself and look online to see what my symptoms were suggesting - it gave me 'Hemiplegic Migraine'.

I'm wondering if anyone could just put my mind at ease, because at the minute I feel all alone with this because no-one seems to be taking me seriously and I'm feeling very anxious and scared. I can barely stand straight or see properly and my face and arm feel so weak. I've been off work for 4 days but can't afford to be off for any more as I'm a self-employed teacher.

I just don't know what to do.

I'd be grateful if anyone could get in touch.

Many thanks in advance.
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