HealingWell
Search Close Search
☰

Hemiplegic Migraine

Support Forums
>
Migraine Headache
✚ New Topic locked
1 23 4 5
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/24/2008 11:06 PM (GMT 0)
Dear Friends,
I suffer from hemiplegic migraine. I am on verapamil, fioracet, phenergan suppo, nubain inj.
The last 2 attacks were so severe that i finished in the ER and spent 4 days in the hospital. The same week , I went back again foe a severe attack and was put on morphine. In my disease, I am very thankful for my neuro who has a great knowledge about the migraines. I live in a small city but the ER MD called always my neuro when they have a case of migraine.
I am doing acupuncture, tai-chi and I see a psy to help me to deal with my pain.
I feel for all of you who suffer and are not being taking seriously. I saw 4 or 5 neuro. I was sent to the Mayo Clinic where they put a name on it.
The sad thing is, there is not really a lot studies about it because it's too rare.
Please keep hope.
Sincerely,
Chris
Posted 1/10/2009 3:24 AM (GMT 0)
HI

  WHAT YOU DISCRIBED IS WHAT IS HAPPENING TO ME , I WORK IN A DOCTORS OFFICE AND 2 OF MY EPISODES , HAPPENED THERE, I HAVE AN APPOINTMENT WITH A NEUROLGIST SPECIALIST , WHO DEALS IN THIS PROBLEM , HE IS VERY WELL KNOWN HERE. THIS IS A VERY SCARY THING TO HAPPEN TO A PERSON, I DONT FULLY UNDERSTAND IT MYSELF , AND I HOPE I GET MY QUESTIONS ANSWERED,

Posted 1/12/2009 3:14 AM (GMT 0)
Hi,

Suddenly my husband and I don't feel so alone. This has been so very scary.

Starting Dec 1, 2008, my husband started a series of headaches, different than his "typical" migraines. He's never had visual aura, just the pounding on the side of the head that would last a day or more, even with his old medication of maxalt or imitrex. He's always had some numbness/loss of strength on his right side with each episode. The last few months, before Dec 1, each episode has gotten more severe and this series he's had the visual aura...seeing spots, shadows.

After a procession of doctors visits and er visits, we decided to take him to the er in the nearest city, as the doctors around here didn't seem to have a clue...indeed his doctor (now ex) told him he wouldn't see him again for this issue. The soonest a neurologist, with a referal would see him was Feb 2, 2009! By this point, he was drugged out of his mind, and still with no relief.

Anyway, so in the er on the 17th, they ran him through the mill...mri, spinal taps, etc. Finding no cause here, they called in neurologist who admitted him to the hospital and ran the headache protocol on him. 3 days later, his was discharged, headache free...for the moment. At this point they started him on topomax and a medrol dose pack, with relpax as his rescue med. Since the discharge, he was unable to sleep at all. Now taking ativan, he can somewhat rest, but the headaches continue to come and go.
A
A stroke of luck, and a canceled appointment, we finally got to see a neurologist Dec 31st. He put my husband on depakote in addition to topamax. The topomax we are still increasing strength on...this week he goes to his full dosage of 100 mg.

Tomorrow my husband will be getting an MRA, to examine the blood vessles in his head. I should mention that I think this test only came about because of the term his new doctor used...a term I had never before heard of...hemiplegic migraines compounded with a cluser headache. I mentioned this to the neurologist on Friday, who then scheduled this test.

Thanks to this forum, I am going to ask about the verapamil. I am concerned however, as he still hasn't had much time off from the headaches. He also seems slower in thought and a bit confused. He has also been dizzy from time to time. And he's tired all of the time...a slight amount of physical activity will have him exhausted. And without the Ativan, very little sleep happens for him.

Just happy to know that we aren't alone. Is there somehwere in the upper midwest (SD MN area) that would be good to get him referred to? Provided that his neurologist doesn't figure it out. I just want to get life back to normal without him being in pain.

Thanks.
Posted 1/12/2009 2:26 PM (GMT 0)

Hi everyone! I´m so glad i found others who suffers from the same diseases as me, i am from Sweden and havent found anyone

on the Internet that is diagnosed with Hemiplegical Migraine possible familial.

For me it started 2 years ago, i went completely paralysed on both side of my body eccept my eyes and mouth, however

my speech was ok.

At the hospital they at first thought it was a stroke but MR was ok, and i did all kind of test all was ok, I was paralysed 6 days

the first time. After that i started to have 4-6 attacks every week for about 7 months. And every time they lasted from 8-24 h

 

The attacks was very different, but always after that first time, i got paralysed at the right side of my body, from the neck

down to my foot, couldnt even hold my head up. I had problem with my speech, confusion, difficulti swalloing and often i too

got only paralysed at the right side of my face with trouble speaking.

I was a mess thought i was going crazy, and it felt like the doctors thought i was a nutcase when i told my all symptoms one

of the times i was back in the hospital.

 

But lucky me after many months i came to a real specialist, and he told me that he suspiced that it was Familial Hemiplegic

migraine, i got a lot of test with him and he gave me a anti epileptic medicine, and boy have it helped?  YES very much

today i´m having only 3-6 attacks per month, and very seldom so hard like before, usullay the speech goes and everything

i do is very slow, often paralysis but usullay only the right leg is only completely paralysed, i feel it in my hand and arm too but

it still workes.

 

My neurologist specialist have in 17 years only had 1 patient with this diagnosis, so here it is a very  very rare disease.

and i have search in all the swedish forums for migraine patients after someone who has my diagnosis.

Where are you all from USA or England or around the world??

 

Bye  Bye!!!!

Posted 1/15/2009 2:19 PM (GMT 0)
Hi Sweden,

I live in England. I have Sporadic Hemiplegic Migraine as I neither my parents suffer from this condition and nor do my siblings. I was diagnosed at the age of seven.

Hi everyone,

Sweden, have either your parents and your siblings (if you have any of course) ever suffered from Hemiplegic Migraines. If not then your diagnosis should be Sporadic Hemiplegic Migraine.

50% of cases are linked to a genetic mutation on either chromosome 1 or 19. I have been tested and I don't carry either defective gene.

I must say that it is a very rare condition. My mum remembers the doctors being surrounded by text books trying to find a diagnosis that matched my symptoms.

The Headache Specialist I see in London (at a Specialist Headache Group) told me that he has about 50 patients who suffer from this.

Take care everyone,

Kala UK

Post Edited (Kala UK) : 2/13/2009 2:15:44 PM (GMT-7)

Posted 1/18/2009 4:42 AM (GMT 0)

Hello everyone!!!

I am so glad to have found this forum, you have no idea! (well maybe you do) I was diagnosed with hemiplegic migraines in 2004 while in the Navy. I was in the medical field and stationed at Bethesda Naval Hospital, which is not only the president's hospital, but also a teaching hospital. I think after my case, I taught them ALOT. I went from one doctor to another. Finally, after finding a doctor that was willing to really help me and take the time to figure out how to treat me, she "dumped" me. She literally told me that she's "ran out of ideas" and passed me off to another doctor.

My new doctor thought outside the box when it came to treatment. I tried Botox for 9months and a diet cutting out ALL migraine trigger foods (everything). I lost alot of weight, but nothing worked. He then recommended acupuncture along with medication. To my surprise, it worked. Though it didn't take them away 100%, it did dull my headaches out and while on therapy I had no hemiplegic attacks. I was then medically retired out of the Military in 2007 at the age of 24 with the benefits of a 30year vet. Sounds good??? Not quite. I have since been looking for a good doctor that understands this condition and that can think of medications that I haven't tried already. (Topamax, Verapamil, Depakote, Lamictal, and many more that didn't work)

I have an appointment on Thursday, and I'm very nervous about what they're going to say or suggest. Not because I'm not willing, but more because, I'm scared of another failed attempt. I would love ANY input and/or suggestions on what to ask. I would greatly appreciate it.

Tira

Posted 1/18/2009 9:20 PM (GMT 0)

Hi Kala and everyone!!!

Ihave taken the gene test but only on chromosone 19, and that was negative, but my neurologist said that there are a third or perhaps even more chromosones yet to be found that could be defective, My father and my grandfather had stroke and my fathers sister and brother too, before that they had many so called tia attacks, my cousins have had many tia´s too.

So that is why my neurologist thinks its familiar, the Hemiplegic attacks looks alot like stroke and Tia, but usually the Tia´s happens for a shorter time. In those days and even today doctors have difficulties putting a diagnosis on us, so he thinks that has been the case, instead of so many Tia´s they could have been Hemiplegic attacks instead.

I have a few questions too before you get the attacks do you feel anything special so that you no that one is coming? Ifeel for about 5-15 minutes that im shaking inside its hard to explaine, it does´nt show outside but i feel it inside. I have read that one attack also can make some people blind, have someone experience of that? And also that some can fall in to coma. I also always carry a cell phone with me when i´m out and at home i also have an emergency neackles.

My neurologist says that none medicine can take the attacks away comepleatly to a 100%, But Lamictal is the medicine that have helped me a lot, i also had Botox for the headache but that does´nt work for me at all. One other thing i wonder about is that when i get one attack the headache that follows whit it isn´t so hard, some times not at all, and often i have only the migraine headaches and then they are much much harder. how is it for you all, i think it would be nice to share experiences here and it seems to be so many that are really happy to have found others who suffers from Hemiplegic attacks!!!

You have to exuse my English but i hope you can understand it anyway!!!!!

Hope to here from you soon bye / Sweden yeah

Posted 1/24/2009 5:04 PM (GMT 0)
Hi

Not been on for a while just been catching up on the posts nice to no we not alone but sad that others have to suffer too.

I ve had a bad time since november but my doctors had a locom in who had dealt with these and has really started the ball rolling again.
Iam now on the last lot of meds the nuro suggest (coudnt stay awake on the other 2).
These are Topamax not keen ( had 3 attacks so far and been taking for 2 wks) and have to be checked every 2 weeks they are a bit strong the side effects so far pins n needles rightside nice(must stop moaning).

Shes referred me back to the neurologist (go in february) shes not happy that i dont get full use back in my left side after the attacks. She says full use should return at some point. But ive always been like this since the first incident they said was a TIA. Anybody else get this?

unfortunately she left just before christmas but it was great to finally have someone who understood and didnt look at me as if i was going mad.

So evan thou some days all i want to do is is cry cos it hurts and i cant move my left side and i get frustrated cos i say the wrong or cant find the word i must find the funny and laugh instead cos iam here and iam going to find something that works.

Have gud wkends and stay hm free.
Posted 2/13/2009 10:03 PM (GMT 0)
Hi everyone,

Sorry for not being around for a while.

Sweden, in answer to your question about whether I know an HM attack is coming, well for me I normally wake with an aura. It is hard to explain but I'll try, it feels like the walls are moving, I experience tachycardia and rapid breathing. I have trouble with my speech, as it slurs and I have trouble finding my words. And my whole perception of what is going on around me is far from reality, it is a very strange and frightening experience. The headache kicks in very quickly as well as the hemiplegia.

I was wondering whether your blood sugar level could be dropping, which is causing the shakey sensation that you experience before an attack.

Thankfully I don't suffer from a visual aura in the normal sense and do not experience the blindness that you mentioned.

When I suffered from an extremely severe attack I become unconscious and throughout the day drift in and out of consciousness. I know that people with HM can become comatose.

I am currently taking Gabapentin and Flunarazine, which together have controlled my hemiplegic migraines for the past year. However, I still suffer from chronic daily migraine (CDM) and can experience hemiplegia with these but I have not experienced the aura symptoms that I mentioned above. I am also taking Tizanidine as a preventative to try and help my CDM but no improvement as of yet, just more side-effects to contend with.

I am going into hospital is a few days time for DHE treatment, this is my second attempt at trying this. As a HM suffer I do have an increased risk of suffering a stroke with this treatment but I am desperate for some pain relief. I am also being seen by another headache specialist for an assessment for an Occipital Nerve Stimulator Implant (ONSI) as I have tried so many preventatives with no success.

I hope you all have a HM free weekend.

Kala
Posted 2/18/2009 5:54 PM (GMT 0)
  Hi Kala!!!  I didn´t find my password so it took a while before i could get in here again.

  Sounds really awful to get uncounsess  smilewinkgrin   (cant spell it right ) like you did.

 But really great that all your medicined work so good together, and that you have felt so good this past year!!

I have never experienced going uncounsess but i often are really confused when i have an attack, like i can see

that people are talking too me but i dont understand what they say!!!

I don´t no if it could be my bloodsugar who dropps before an attack, maybe??  I have never woke up with an attack

and they come anytime during the day or evening.

How is  your life working i mean beacuse you got it so young and have had it so many years!? I mean like school work

and so on???

I got a pension many years ago beacuse i have a really bad neck with nerve damage, but these HM attacks gets me isolated

don´t fel to go anywhere alone, and i´m singel so.... of course i have friends and 2 grown up sons, but it would be great to

do things like before these attacks!!

But when i read about how good you´ve felt this past year( eccept the headache of course) So thats give me hope too.

I have headache 3-5 days a weak and are using triptans i no that they shouldent bee used with HM but my neurologist said

i could use thenm if my painkillers dont work.

Hope you all too bee HM free!!!!   / Sweden

Posted 2/18/2009 10:03 PM (GMT 0)
Hi Sweden,

I have a similar experience to you with regards to being very confused and can see people talking to me but do not understand what they are saying. I can remember when in my teens and I was at college an attack started and I went deaf, it felt like I was trapped in a bubble. My tutor and two friends were talking to me but I couldn't hear them. It was very scary.

My hemiplegic migraines have had a great impact on my life and unfortunately have prevented me from following my chosen career path. I want to go to Medical School and become a Neurologist. However, it took me 11 years to complete my degree in Biomedical Science, I finally graduated in 2006.

I started work but after a year my CDM and HM were too severe and eventually I lost my job. cry 2008 was a horrendous year as I was in and out of hospital, one time I went in for the day and ended up being kept in for 29 days!! So for the past year I have been thankfully my HM has been brought under control but I am still very disabled by CDM as I am in constant pain that ranges from 8 to 10/10 on the pain scale on a daily basis. This has had a great impact on my level of concentration, which is very low, and my short term memory is awful.

Despite all that I started this year as a new beginning with a positive attitude. I am attending two evening classes to study French and Spanish in an attempt to restart my academic abilities. I thought that by studying something completely different this would help. I am trying to do a little bit every day 10-20 minutes for each language, and hopefully I will gradually be able to study for longer. I am also trying to read for the same amount of time my science magazine, however I still find this very difficult. I am also learning to touch type, which involves practicing for 20 minutes a day. All of this isn't very easy and some days I am unable to do anything but I am working on it!! wink Also, I have no social life due to being in constant pain and so like I said my life is very limited due to this disability.

So like I said in my previous post I am working with Headache Specialist, which thankfully has resulted in my HM being controlled and so now we are working on my CDM. Hopefully, this can be sorted very soon.

I truly hope you find a medication or combination of medications to give you relief from your HM attacks.

Take care,

Kala
Posted 2/22/2009 9:52 AM (GMT 0)

Hi nirereid!!  My opinion is YES i think you can suffer from HM, and i´m so sorry that you have had none help for so many years!! But what youve read here above from so many who suffers from this diseases the doctors ( even if they are neurologists ) they have difficulties to put a HM diagnos ? It seems to me like many of them too havent heard about or even read about it in the medical school.

And when i read about the neurologist who wanted you to jump in the car and drive to her when you have a attack i couldnt belive my eyes nono   if someone is crazy its probably her!!! I think that you should search for a real migraine specialist for as you seen here there is a lot of medication that helps ( even if they not helps to a 100 % ) they give a BIG reliefe!!! Trust me its worth all the money in the world to find help, and you really need it!!!!

Its nice that you found us, i felt so happy to when i found theese pages, And yes no one i no havent heard about this kind of migraine and neither had i before. No one can understand how it is too live with this disease if they dont have it themself!!!! and usually people think that migraine and normal headache is the same thing.

And i often say that there is good and bad car mechaniks so of couse there is good and bad doctors too!!!

Hang in there i´m certain you find someone who can help you too!!!  BYE / Sweden

Posted 3/3/2009 1:45 AM (GMT 0)
Wow.. as so many who have come before me .. I no longer feel so alone. I am a 26 year old female who lives in the body of a 73 year old. Everything they say to me wont happen does. Most recently this was weekend when I had to leave church on Sunday morning mid service because the whole right side of my body was numb. By the time i got there i was dizy, by the time to the desk I was disoriented... and by the time i was back to an exam room I could not talk either. 1/2 hour later i was as bad as it got where i had to move my arm with my other hand. I stayed in the 1/2 paralasys state for aprox 10 hours. It was the scariest day of my life sine i did not know what was wrong with me untill this am. All I could think was that I was going to be stuck like that and how was I going to care for my children, a family or hold a job in that condition. They pulled me off my birth controll pills so fast my head spun even though it was the only thing that kept my Endometriosis in check. Then they added Topamax and daily asprin to my many other pills i take daily.. I'm pretty new to this but i have to say the apetite supresant would be really nice since i also have hypothyroidism. I was wondering if you guys on here also have rare other diseases (like endometriosis).
Posted 3/19/2009 7:53 PM (GMT 0)
Hi everyone!!! Kala have you got the ONSI yet? And if, does it work for you so that you get some relife??

Headache from 8-10 / 10  is really awful!!!!

When i have 9 or 10 then i only want to die!! At those times i always end up with a ambulance to ER.

There they give me morphin shuts and medicine to calm me down and something that stops me from throuing up

all the time. They help but not always for so long time sometimes only a few hours and then it starts again.

Today i had a hemi attack again it lasted for 6 h, but i am still very tired always after one i feel like i could sleep

for many days, so i thought i should write a little bit to keep me awake eyes

Today my right arm and leg went compleatly paralysed and i started vomiting, my sister came by to help me thou

i couldnt move with my wheelchair at all ( I hate it when i have to realy on others )  if only my arm should be ok so

that i could manage myself ( Well it is what it is )

I really wonder where everyone are who has written here before????????

Have you found any other forum to discuss in??? It sure wood be nice to no where i could find it if there is some!!!????

Well enough for today turn   hope you all will be HM free

Sweden

Posted 3/21/2009 2:33 PM (GMT 0)
Our situation is not as challenging/serious/chronic as some of the postings I see here but thought I would share our situation for everyone's benefit. My 14 yr old daughter started having hemiplegic migraines about 6 months ago. We have had 2 episodes with the stroke like symptoms (mostly tingly face, tongue, arm and leg) and some severe bouts with abdominal pain (that started a year ago), although not at the same time as the hemiplegic migraines and a few just massive headaches. They are tentatively diagnosing the abdominal pain as an abdominal migraine. Never heard of it but it is out there. Of course, I had never heard of hemiplegic migraines either. As an EMT, when my daughter presented with the numbness, I immediately got stressed. The docs in the ER flipped out too and well, after several ER visits, CAT scans, MRI's, substantial blood draw for the pediatric neurologist, abdominal evaluation by a GI specialist and an evaluation by a GYN, here is what is working for my daughter - reglan and toradol.

The other night in the ER, via IV, they provided reglan for the nausea and then toradol (NSAID) for the pain and she was ready to leave about 10 mins later, fully recovered. Since the toradol is not a narcotic, she gets right back to life. We now have these meds to provide by mouth when the aura arrives to see if we can't derail it before it starts.

We haven't used the new meds by mouth yet so can't speak to their efficiency. We are very early into the evaluation phase of this battle and hope that we have found two meds that we can provide her to obtain relief and try to keep her high school life as normal as possible. We still have a few more follow ups from the blood draw, she has a new blood draw to evaluate/verify some specific tests run the first time by the neurologist and need to follow up with the GYN again regarding an irregular menstrual cycle. The neurologist is very impressive and had the Mayo Clinic play a role in the blood evaluation.

Good luck to everyone here.
Posted 3/23/2009 8:10 AM (GMT 0)

Hi Teens dad!!!  I am so sorry that your daughter have this diagnos, You write that it started 6 months ago and that´s not so serious?? Well if you are lucky it wont get worse, but it can be after some time.

But it is a very challenging disease to live with anyway!! beacuse when you have it then you´ll always will be afraid of when the next attack will come and how hard it will be. As you can see above Kala had it from childhood and how she has experienced it all here life. But great that you have found some medicins that work for your daughter!!!!  And thank you for charing!!!

I wish you all the luck in the world and hope you´ll get bye this, i keep my fingers crossed for you!!!!!!!

Take care / Sweden

Posted 3/24/2009 2:01 PM (GMT 0)
mad  hi. my husband has been diagnoised with hemiplegic migraines but the doctors dont know what to do about them. his doctors is with the va system. seems they are as much at a loss as we are. what do we do? we can't make tham give him meds. but he needs something done soon. i really don't think he can go on much longer  like he is. his spells seem to last longer and longer each time and are happing more often. he hasn't been able to work for 2 years. the quality of life as he knows it is no longer. any help will be so grateful.

 

Posted 3/24/2009 5:34 PM (GMT 0)

Hi mimandpawpaw!!!  First i have to say that i´m truly sorry that your husband have this disease, what kind of doctor do you go too?? If it´s not a headache specialist then i really think you should seek one. What kind of symptoms does he have? And haven´t  he had any medications in 2 year? In this forum it doesn´t happens so much and i am seeking for other forums, but every now and then someone new comes around so............

Okey looking forward to hear from you take care / Sweden

Posted 3/24/2009 10:21 PM (GMT 0)
Hi Sweden,

I am so sorry that I haven't been posting but I have been having a rough time. How have things been for you?

In answer to your question I have not yet had an ONSI, when I was last in hospital 4 weeks ago I did see the other Headache Specialist and the Neurosurgeon who have both agreed that the ONSI is the way forward for me but they have to put a package together to ask my Primary Care Trust for funding. This could take up to year before I find out whether they will give me funding for the surgery. So no quick fix!

Whilst in hospital because I was having no response to the DHE my Headache Specialist decided to give me a series of multiple nerve blocks all over my head, 18 in total. These possibly in combination with the DHE greatly reduced my pain for 2 weeks but I then caught a viral infection and this has sent my pain back through the roof. However, my Headache Specialist is hopeful that when I recover from the virus that my pain levels may decrease again. So I live in hope.

Despite all this my 'normal' hemiplegic migraines continue to be controlled but I have been experiencing a lot of painful hemiplegia, especially whilst my pain has been high again.

So that's where I am up to.

I will try and catch up with everyone as soon as possible.

Take care,

Kala
Posted 3/25/2009 4:05 PM (GMT 0)
hi sweden, this is mimi. pawpaw is 47 yrs. had his first attack on 3-19-07. thought it was a stroke. he never had a headach before then. now its 24-7. daily. paralysis on right side. speech, vision. light doesn't hurt too bad. some attacks last 2-3 days. others 2-3weeks. it varys. 2 drs. one primary. one neuro. but he is a different dr. anytime he goes to see him. he doesn't tolerate meds. to well. doesn't like to take them but he realizes he needs to so he can function somedays. neurontin. took him off of it last week. put him on depekate?-valproic acid 250mg. doesn't like the side affects. he hasn'e really found anything to ease the pain on a daily basis. just came out of a bad atk. yesterday. sorry about rambling. just glad to know someone else out there knows what i am talking about. thanks!!!!! yeah
Posted 3/27/2009 6:47 PM (GMT 0)

Hi kala and mimipawpaw!!  That´s too bad that you have to wait one year before you can have the operation kala!!! I am 45 years old and have had normal migraine since i was 20 something, without the aura but often so hard that i end up in ER. But summer 2006 i went compleatly paralysed and was that for one week, after that ive had many attacks a week when i got paralysed on my right side ( It´s always on my right side ) and my speech went womiting or away compleatly, i was confused my balance was awful. When i got paralysed it was from my neck down to my feet couldnt move at all.

Often i´ve only got paralysed in the face and my speech went away, Well it was first in 2007 i´ve got the diagnos FHM, i havent had a diagnos for migraine either for all theese years, the doctors always when i was young thought it was headache coming from my bad neck ( i have nerve damage there ) so...... if i when i was younger had met a good doctor who understood that i had migraine o´boy i could have had so much easier headaches with some help from real migraine medicines.

For my migraine headache i take painkillers with kodein and if they don´t help then i can take a triptan called Zomig nasal. I have had much help from my EP medicine, i do have some attacks every month but i can live with that!! I am so thankful that i don´t have attacks many many times a week longer.

It is hard to often have side effects from medicines, but i am sure that you´ll find  a medicine that don´t give you any sideeffects. You only have to try and be patient...... something will work. And i can tell you right away that HM as bad as your husband has it, does´nt ease of without medicine. Before i had mine i thought i was going crazy, and i should have done anything to get ride of it!!!  But none medicine works to a 100 % yet, but we hope that someday it will.

Hope all to be HM free this weekend!!!! Bye / Sweden

Posted 3/29/2009 9:15 PM (GMT 0)
Hi Everyone,

I'm so glad to have found this forum. My husband sufffers from these FHM. Of course "I" just figured this out in the past two days and finding this forum has helped.
I know this will be a long story, but please bear with me.....I need to tell some one....Just a little history....my DH works for a major teaching university in the IT dept. so he see's doctors at the university which is normally great.
He's been treated for "seizures" for the past 9 years!! (I'm still pretty up set about all this right now) He has not been having seizures!! He's been having FHMs!! You know just some quick addition in my head, we've spend over 20,000 on co pay for meds.......the wrong meds!! Any way like I said we've been having these for 9 years. My DH had heart surgery 9 years ago and had his aorta replaced, that's when it started, like the first week home from surgery. Unfortunately his heart surgeon died before we went back for his check up, so we had to see some one else....We told him about the "episodes" and he just brushed it off and said he was healing well and it would go away. Well it never did. So my DH starting seeing the head doctor of neurology at the university. Well he diagnosised it as seizures and said that my DH PROBABLY had a small stroke during surgery and this is the out come from it......seizures.... This is the head of neurology, (our first mistake)(and a horrible learning exp.) in 9 years he's only scheduled 2 EEG's , 2 day, (one we just got home from), he's only checked my DH's blood that we remember maybe 4 or 5 times, (DH was up to taking 22 pills a day) which I've learned now should have been done at least every 3 to 6 months. 2 years ago, I thought he was having a stroke, ER time, 2 day stay in the hospital, diagnosis.....a migraine....I've been thinking every since then we might have been having migraines.....but the doctor didn't agree with me. The seizures were about one or two a month, but when he would have one it would put him down and out for 3 or 4 days. Of course the doctor would blame these on my DH for maybe missing a dose of meds. Jan. 9th of this year the "seizures" started and did not quit.....I think my DH has only worked one full week since then. He sees the doctor in Feb., we wanted to be sure we could go in there and say he had missed no meds......So the doctor increases his current meds and gives him a new one. And as everyone knows it takes a couple of weeks to increase meds. Then told us to wait 3 more weeks and call back and schedule another 2 day EEG. (WOW second one in 9 years) Well his body couldn't handle that, so I called the doctor back to see what he wanted us to do, I find out that the doctor is at a teaching seminar out of state.....and as soon as they could get intouch with him they would let me know....well I started taking him off the increased dosaged and the new med myself......we had been taking it for 2 weeks and no improvment. To try to make a long story short, he had a "seizure" during the test and the test showed NO sign of seizure activity, and the associate doctor making the rounds in the hospital said he believed that DH was having migraines......but he would have to confirm his findings with head doctor, so DH said he was taking himself off of all the seizure meds, the associate doctor said that DH couldn't do that with talking to the head doctor......now our Big mistake......since the head doctor has taught all the other doctors in our area, none of them wants to take DH as a patient, during the past years I've called trying to find a new doctor and when they find out why we want to change and who the other doctor is, they won't accept DH......I've started looking out of town.

At least I now know what's going on, FHM, .......and if we can see another doctor that's not associated with the university that DH works for maybe I can push the doctor more.

Thanks to everyone for taking time to read my rant! I'm still looking for information on this. So if anyone else can post links to anything they have learned or other forums I could visit I would very much appreciate it so very much.....

I wish you all good luck in dealing with this. It's very had to have this diagnosis and it's also very hard being the care taker for someone with this.....

peace, love and good health to everyone.......Candestarz

Post Edited (candestarz) : 3/29/2009 3:23:37 PM (GMT-6)

Posted 3/29/2009 10:43 PM (GMT 0)
Hi Candestarz, so sorry to hear about your husband. sounds like you and i are in the same boat. feeling hellpless and don't know what to do. pawpaw went to the docror on friday. this time his primarydr. came out with new meds put him on Zomig. already has had to take 3 pills since friday. also on neurontin, and Nortripy.does he is having a really bad spell- that's what we call them- since yesterday. kinda new symptom. the back of his head is kinda swelled up a little on the left side. his spells always affect his right side. and the spot is sore to the touch. he says sometimes it feels like electrical shocks going on inside of is head. doesn't go back to the neuro. untill sept. but he sees his primary again in may. lots of blood test to go on then. still feeling helpless about all of this. all i can do is try to comfort him. thanks for listening to me today. GOD BLESS ALL OF YOU!
Posted 3/29/2009 11:19 PM (GMT 0)
mimandpawpaq,

I feel your pain......DH is also on the right side, and his "auras" change all the time. But he always has them. WOW only 47......that's really young too..I see you said the VA. Please thank him from me for his service to our country. Were you able to get him on disability? I sure hate that for pawpaw. I know it's got to be bad on him and I know how bad it is on you too.........

My DH is only 52. Still very young. We haven't even tried any migraine meds yet. The only sad thing that I'm finding is regular migraines might be treatable/avoidable with the elimination of certain food items, but I'm not finding where these FHM are treatable/avoidable that way. I'm hoping there is more information that I haven't found yet. We're not even sure when we are to see the neurology doctor again.

Any time.......
Posted 3/30/2009 3:44 PM (GMT 0)
candestarz, pawpaw said thanks for the thanks about service. hes 47 and was in the COAST GUARD back in the 80's but it still makes him feel good about it. your dh- does that mean darling husband?- is still young at 52. how long have the headaches been ging on? his started 2 years ago. seems like 20yrs. yes it's hard one me. i don't thing anyone realizes how hard it is on the spouses. we are always the one there for them. we have to learen how to be nurses to them. help them dress when they are having abad day. we are always the ones there 24/7. i don'e mind. he is the love of my life. but it hurts do much to see tham like that. knowing that there is nothing we can do.
✚ New Topic locked
12345