Suicidal due to hemiplegic migraines

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penguin14
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Date Joined Jun 2010
Total Posts : 14
   Posted 6/15/2010 1:47 PM (GMT -6)   
I've been suffering hemiplegic migraines since i was 18, now 25. At first they would be every 3 to 6 months but now they are daily to the point I am disabled with no life. The neurologist has exhausted all possible treatments on me so i lie in bed all day now to cope with he pain and paralysis but find myself feeling having suicidal thoughts and feelings and I have no more than 4 hours inbetween migraines to recover and I can't cope with the thought of doing this for the rest of my life. Any advice would be extremely greatful, literally anything. Thankyou.

midnight sun
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Date Joined Jun 2010
Total Posts : 2
   Posted 6/15/2010 2:13 PM (GMT -6)   
I would be lying if I said I've never had those thoughts along with my migraines, but I have. No one can tell you exactly how you feel or even try to understand, but I've learned that with migraines (just as with any other disease) acceptance is a huge part in coping with them. There is no cure for migraines, so learning how to cope is key in the daily life of a person with them. You need to call a crisis hotline. I have done this before and they are trained professionals who are there to help YOU. They can give you all the resources you need to seek help. I also recommend starting a blog and writing about your migraines, don't edit yourself, be completely real. Start a group on Facebook or other social networking sites to help spread awareness about them. Be proactive, if you can, because there are people that need to understand the type of pain you're in. Being proactive will help you channel some of that pain and energy you're experiencing in to something positive. And let us know if you choose to start blogging, because I am sure many people would love to start a support group with you!

Also, therapy does help sometimes. It just depends on finding someone you click with. One of the best things I think we can do is instead of fighting it is learn how to positively cope with it (when we can).

Namaste.

damouthy1
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Date Joined Sep 2009
Total Posts : 663
   Posted 6/15/2010 2:36 PM (GMT -6)   
Penguin, I am so sorry to hear that you are suffering so bad right now. I truly feel your pain. I too have suffered from head pain daily and know how completely consuming it is. Have you tried seeing a pain managment doctor? Or I have heard there are headache clinics too. I am glad you have found healing well as you will get alot of support here, we really do care! Please hang in there and keep trying to find the right doctor who can hopefully figure out a way to get you some relief. You are in my thoughts and prayers. Sometimes it takes a different combination of meds to ease the pain. Take care and please keep us posted.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


penguin14
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Date Joined Jun 2010
Total Posts : 14
   Posted 6/15/2010 2:42 PM (GMT -6)   
Hi everyone, thanks for your comments and advice, it's great to know i'm not alone in this. At the moment i am on topamax, propranolol and maxalt but unfortunately none of them have any effect. I saw my neurologist yesterday and she feels there is nothing more she can do for me so it is about accepting it now but i just can't believe im 25 and never going to be able to work or have a family. i can just about eat once a week at the moment never mind having the rest of a life. i suppose i just need better coping strategies instead of thinking about sticking my head in the oven in the middle of an episode!

damouthy1
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Date Joined Sep 2009
Total Posts : 663
   Posted 6/16/2010 6:07 AM (GMT -6)   
Hey Penguin, I realize that the neurologist is out of options, but I still feel like maybe you should try seeing a different doctor. Maybe not another neurologist but a pain managment doc or something. I have suffered with head pain since I was 18 and have seen 3 neurologists and none of them could or would help me. The main reason being that most of them do not like to treat migraines with narcotics. Which is a good idea but unfortunatly some of us only get relief from narcotics. I have tried alot of different "migraine" meds, triptans, ergots, anti seizure meds etc, etc and never got any relief from them. In fact some made me very ill. I am not saying that opiates are the answer for you, all I am trying to say is that you shouldn't have to just learn to live with the pain. As I posted before sometimes it becomes a so called magical mixture of meds to finally work. I spend alot of time online researching different meds and then bring it to my doc. I would rather not be on pain meds, but it is the only thing right now along with the other stuff I take that has given me some quality of life. I have 5 children and I need to function. So please, don't give up you have to be your own advocate in this! Take care and please keep us posted.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 6/16/2010 1:46 PM (GMT -6)   
Hi Penguin,

I am sorry but I think, although your Neuro may have limited options for you, to leave you with the feeling that you cannot move forward is intollerable!!!! I am so sorry you are suffering like this. Is your Neuro a Headache Specialist? - I suspect not!!

Please try and find yourself a Neurologist who is a Headache Specialist - I did and it changed my life!!!! I was told by several Neurologists that I had Migraine and I had to learn to live with it!!! In part it was true but not helpful! The Headache Specialist took a very different attitude, he was determined find a treatment or combination of treatments to give me the best possible quality of life - and indeed he has done just that!!!!

After the Headache Specialists investigations he found that I had Chronic Migraine, but I also had a rare Headache called Hemicrania Continua which he has been able to treat! He has also looked for different things that work better for the migraine too! His positive attitude has helped me manage what is an awful disease and regain some quality of life!!

Sometimes he has hit a brick wall with treatments when they have stopped working, but it has not stopped him trying other things until he has found something that will help!!!

I am also concerned for you as I understand it, I believe it is not safe to use triptans such as Maxalt for Hemiplegic Migraine!!! But please do not take my word for it, get this checked out with a Neurologist who is a Headache Specialist!!! Also Topamax can make you very depressed so that will not be helping you cope!

Please let me know how you get on??

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn


penguin14
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Date Joined Jun 2010
Total Posts : 14
   Posted 6/16/2010 1:55 PM (GMT -6)   
Hi Ann, you are absolutely correct, you shouldn't really be using triptans with hemiplegic migraines as they can induce stroke. I had one TIA due to this 9 years ago but my neurologist felt that i should stick with them as it was "as she says" once in 9 years. Ive just been referred to a specialist migraine clinic to see a headache specific doctor, just waiting for the appointment so i'm hoping i get more joy because to be honest with the cocktail of drugs i'm taking at the moment i'm pretty sure i'm doing more harm than good.

thanks for the reply
sam

Annuk
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Date Joined Jan 2006
Total Posts : 1308
   Posted 6/16/2010 2:07 PM (GMT -6)   
Hi Sam,

I think you are right about the meds you are on!! Sounds like you are on the right road to see another Doc, really hope you get to see this new Doc soon and they get you sorted out with something to help you!! Please let me know how it goes??

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn


penguin14
New Member


Date Joined Jun 2010
Total Posts : 14
   Posted 6/16/2010 2:31 PM (GMT -6)   
hi everyone, i was wondering if anyone could help on this. ive been hospitalized a few times due to my hemiplegic migraines and it's the high flow oxygen that really makes the difference (im sure the morphine played some small part). within 20-30mins the pain is reduced by about 70% and within the hour its gone completely. my neurologist says i cant have oxygen at home though. does anybody know another way of getting oxygen??

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 6/17/2010 4:57 AM (GMT -6)   
Hmmm...did he say why you couldn't have the oxygen at home? I know that I have gotten some relief from using oxygen (it will usually take the edge off at least) I don't understand why you couldn't use it at home. Isn't oxygen pretty much harmless if used properly?
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


penguin14
New Member


Date Joined Jun 2010
Total Posts : 14
   Posted 6/17/2010 7:16 AM (GMT -6)   
hi there shannon, she said i couldnt have it as they are so regular and she feels that i couldnt just use it everytime i had one (even though i see why not). thats why i am trying to find out if there is a way of going around her to get it.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 6/17/2010 12:46 PM (GMT -6)   
I would fight for the oxygen, it used correctly it can be used many times per day, as against a triptan that can only be used twice a day!!!

I use Oxygen, and the rule of thumb is to use it on 15 litres per minute until the pain goes or reduces and then a further five to ten minutes to mop up the attack! You must use a non-rebreather mask. I usually use it for say 20 minutes or half an hour no longer! Short burst oxygen like this is quite safe!

If I have several attacks in one day I try to leave at least 2 hours between Oxygen use as otherwise it can cause rebound!! It can also cause rebound if you come off it too soon!!! - i.e. not given it the extra 5 to 10 mins once the pain has gone! I hope this helps!

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn


tkg59
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 6/18/2010 11:06 AM (GMT -6)   
Lack of proper nutrition could be the root cause of your headaches. We all know and have read that our foods do not have the same nutrition in them today as they did 50 years ago, and our soil has been depleted of most of the minerals our bodies need. With that in mind, notice the increase in headaches and migraines, look at all the people searching for relief from constant headache pain. The doctors usual answer, drugs. They are pumping more chemicals in our bodies trying to relieve your pain and usually causing more problems from all the side effects. It’s time to look at nutrition as your answer for migraines and headaches. There is an all natural, safe way to prevent your pain.

From personal experience, as having lived with a migraine sufferer for 25 years, I know how miserable migraines are, both for the one suffering and from those close to them. I’ve had to walk on eggshells, be quiet, sit in the dark, miss many family events, all due to headaches. I have sat in the emergency rooms and doctors offices, hoping this drug or that drug would stop his head from hurting and not stop his heart. Forget about the long term side effects, we just had to get through this day.

I am hear to share with you, we found that it was a lack of nutrition. Sounds simple but it was not easy getting to this point. There is a safe, natural solution, We are glad we tried ‘one more thing’.

Hope this helps you too.



I have edited your post to remove the webb addy and would refer you to the forum rules about advertising. Ann

Post Edited By Moderator (Annuk) : 6/21/2010 4:31:15 AM (GMT-6)


HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 6/18/2010 9:12 PM (GMT -6)   
HI penguin14,

I have browsed the boards for a while but I had to sign up tonight just to respond to your thread, because I can really relate to what you're going through. I am so sorry to hear about what's going on with you. I suffer with hemiplegic migraines also. I was first diagnosed at the age of 26 I am now going on 29. I went from having them daily and being very symptomatic, to being almost symptom free. Then having a doctor alter my medication which has caused me once again to to have intractable daily migraines. It's really hard as you know.

I guess the only helpful words I can offer is you are not alone there is a wealth of information out there for you. Things will get better. You just need to find the right medication combination. I am sure there are still different medications or combos you can try. I currently take topomax, Calan Sr (verapmil), I recently started diamox, nortriptyline and take diclofen when needed for acute treatment of headaches and other hemiplegic symptoms. They seem to be helping. Have you tried any of these?

As another member stated about triptans be very careful with them I believe you said you use maxalt. I always thought that was contraindicated with hemiplegic migraine (it's still up in the air about the safety of triptans and their use with hemiplegic migraine sufferers). I used maxalt once before and it caused me to have full right sided paralysis. It might differ for others but......

Everyone else mentioned all the good stuff like about the migraine specialist. It's like night and day between a migraine specialist and a regular neurologist and their approach to your care I.e treatment options, etc.

Knowing your triggers is important but I'm sure you know that. Also something that I really overlooked these past couple of years that triggered my headaches, and I still struggle with today, is I do not maintain an adequate fluid intake and this is a really big contributor to my daily episodes.



I wish you all the luck in the world penguin14


HemiL

penguin14
New Member


Date Joined Jun 2010
Total Posts : 14
   Posted 8/28/2010 6:03 AM (GMT -6)   
Hi all,

Finally got to see the new neurologist this week and he is going to give me botox. Not sure how good or bad this is but at this point I will try anything

Sam

nursysteph
New Member


Date Joined Sep 2010
Total Posts : 8
   Posted 9/15/2010 3:42 PM (GMT -6)   
hey guys, yeah the oxygen thing has me a bit confused as well?? people leave hospital all the time on o2, and yes it is considered a medication but if you are trained on how to use it safely just like you are taught with any drug one would think it shouldn't be a problem?? I'm not sure which country you are posting from but in Australis we have nurses who specialisein pain managment and some who specialise in headache pain.

I'd also like to say that i hope none of you have had the experience of being hospitalised and feeling like people thought you were just a sook asking for morphine for a "headache" i'm a nurse and was helping out a ward (i'm paediatric nurse and was pooled to an adult ward for a shift) and a young woman was in with a migraine and you could hear her moaning all night, when i asked one of the nurses she stated to me that she was a wingy ***** who needed to get over it!!! I was horrified
i have migrains but nothing like what you guys are talking about here and i know that sometimes its hard for people to understand, theres no physical sign of ur pain but it hurts like hell,

So if any of you have had this response in hospital, on behalf of my profession, sorry

minnie75
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/21/2010 8:11 AM (GMT -6)   
Hi Penguin, I joined so that I could respond to your thread.

I too suffer with Hemiplegic Migraines regularly and have often been suicidal and have recently had many trips to the A&E department unable to cope with the pain. I have been on many different medications and recently been seen by many specialists as the severe attack in march 2010 left me with permanent left side weakness, an inability to communicate effectively and what sounds like a foreign accent. Luckily, I am now on Topiramate, 100mg twice per day which is reducing the frequency and severity, my disablement is improving as is my communication although the accent remains. I am also due to have the GON injections and perfussion/diffussion scans to see what is going on as well ( sometimes the normal CT / MRI / Lumbar puncture outcomes are not helpful with showing brain damages from migraine) whereas the perf/diff MRI may show deeper lessions, I am also thinking about Flunarazine should the Topiramate not be an long term option.

It seems hard to live with the long term option of continuous pain and paralysis but try to find the strength to carry on, and don't be afraid to ask for help. I have a carer from social services who help with personal care each morning, and you can ask for oramorph to be supplied for severe attacks and this can be reviewed by your GP so you don't have to keep calling amubulance, discuss all these options with your GP and neurologist and demand that you be given some help to manage the pain so you can regain your independance and self worth back.

I hope you feel better soon.

penguin14
New Member


Date Joined Jun 2010
Total Posts : 14
   Posted 10/20/2010 3:14 AM (GMT -6)   
hi there minnie75

sorry to hear you have been suffering the way you say but sounds like you have a doctor who is willing to try all sorts of different options to help you out. I wonder what country you are living in as in the UK 2 x 50mg tabs of topamax are all that are we are legally allowed to take here which is my dosage and as you say you take 2 x 100mg. It's one month since my botox and unfortunately it's had no effect, i've even been using oramorph and surprisingly that had no effect, next option is to be admitted into hospital and have morphine, great !!!

HAVIN ISLAND FUN
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/11/2010 9:43 AM (GMT -6)   
PENGUIN14... I am so happy to hear you have been diagnosed at such an early age... Many of us suffering from this horrible migraine and we go undiagnosed for many years.. Like myself I have had this strange illness since my late teens and was diagnosed when I was 56 years young...

All of my family members who went before me with these symptoms never was diagnosed... go on the internet and find a Neurologist that specializes in Hemiplegic Migraines in your area... This kind of Doctor is out there so search for him... or Call all Neurologist Offices and ask do they know what Hemiplegic Migraines are and If they say Yes they specialize in Hemiplegic Migraines, make them tell you what any of the symptoms (paralyzation) are.. If they CAN NOT tell you what some of the symptoms are .... move on to the next Doctor...

You may have to go out of your community to a larger city to find one... but Please find a Doctor who specializes in Hemiplegic Migraines for your own SANITY ... The State of Florida in 2008 there were only 3 ... that is right in the whole State of Florida, only 3.... I hope there are more now...

Sad to tell you there is no cure at this time. Just good Doctors that know this illness and can take care of you without all the running around and explaining over and over again what you are going through.. I live with a pain level of 8 everyday of my life but now I have meds that can help immediately when I feel the pain level going up or I get the choked feeling, or when the wonderful numb feeling starts taking over one side of my body....

Before I was diagnosed every time I would go to the emergency room they would treat me at first like I was having a stroke/heart attack until they put me on the EKG and my heart was perfect... They (emg room staff) would all walk away ... and would treat me like I was faking the whole episode...

Please penguin14 I know you think you have your whole life ahead of you and
YOU DO! .... SO REMEMBER THAT... You are strong and you have your health and most important you now have a diagnosis... no more wondering scared what in the world is going on ...

Get busy at home when your migraine will allow you to do something... take up Crocheting or Knitting ... Study the Bible .... talk on the phone .... find new TV shows you like....

First thing find a Doctor that will fill out the forms and stand with you then Contact Social Security for the Disability ... Good luck to you Penguin14.... THERE IS LIFE AFTER THE DIAGNOSIS...

HAVIN ISLAND FUN
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/11/2010 11:45 AM (GMT -6)   
Hi ... try http://www.ninds.nih.gov/ for more info on the hemiplegic migraine :-) yeah

JYP
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/21/2010 6:55 AM (GMT -6)   
New to this sort of thing. Been suffering from Hemiplegic migraines for 20 years. Not as regularly as some thank goodness. Recently, my friend has had a go at me for "wasting" ambulance time as people who do not know me phone for ambulances when they find me having a hemiplegic migraine. How do I make her understand that it is not my choice. I would rather not go to hospital despite being scared to death during the experience. I am unable to talk at all during my migraines and also have found oxygen works to relieve the symptoms of the weakness. I tried to explain to my friend that my main concern is would I know if it was a stroke before I have taken my normal medication and laid there in pain or would I be too late for appropriate treatment. She told me I was over reacting.

penguin14
New Member


Date Joined Jun 2010
Total Posts : 14
   Posted 1/9/2011 11:34 AM (GMT -6)   

JYP hi there, definately not overreacting as anybody suffering with a hemiplegic migraine or even a normal migraine will tell you! Andybody suffering with a hemiplegic migraine is advised to wear a medical wristband explaining the condition incase you are one of us sufferers who does lose their speech during an attack and have an in case of emergency number on it and if that means 999 or 911 if of course you're in the states then do that because you can never be too sure, I had a stroke due to this illness in my teens so it can be fatal!

I'm really struggling with this condition at the moment, i've even been allowed to up my dosage of topamax to 400mg which is unusual for the uk treatment of this condition, they usually stop at 100mg. It's lasting 5 days at a time then leaving me with a days tension headache then bam! it's back again for another 5 days and so we go on like this. I officially have zero life, i weigh about 6 stone so that's 84 lbs and there is absolutely nothing I can do about it because I have the best in trade doc here. So what to do next? I would love any ideas absolutely any you have all been fantastic so far.

Samantha


catlou1
New Member


Date Joined Feb 2007
Total Posts : 13
   Posted 1/11/2011 11:06 AM (GMT -6)   
Samantha - Sorry to hear about everything you're dealing with.  Have you tried taking verapamil?  I was initially put on topamax when my hemiplegic migraines started but it didn't really do anything for me except cause additional side effects.  My neurologist switched me to verapamil and it has been nothing short of a miracle pill for me.  I  currently take 240mg daily.
 
Good luck!

TaraLyn
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/13/2011 3:03 PM (GMT -6)   
Hello as a hemiplegic migraine sufferer I know exactly what you are talking about. I'm on nuerontin 800mg x3 and 1600 at bedtime lamictal 200mg x2, topamax 125 x2, verapamil 180 x2 and phenergan for nausea exert 6 hrs. I have spent the last 11 years in and out of the hospital. They have tried everything to
from magnesium and every narcotic available the only thing that breaks the migraine is by receiving high doses of Demerol IV every 4 hrs, I have received up to 150mg. I've also been sent home with a pcp pump to administer the meds, I also have a medical chest port due to lack of veins due to many hospital stays. I have also contemplated with suicide it's very painful and a terrible thing to have to live with my kids grew up fast before their their time and I found them caring for me more than me caring for them. I hope you have found the help you need. If you found something that works do share as I live with the same.

Thx

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 1/17/2011 1:43 PM (GMT -6)   
Hey Penguin,

I would like to know how that 400mg Topamax is working for you? I currently take 200mg. I am in the states and I would like to bump it up . . My physicians is kinda of against it since I have side effects from being on 200 mg but I am sort of willing to live with them (visual disturbances, loss of appetite) j. Topamax was one of the only medications I have ever taken that had some affect on these migraines. Verapamil is the other but I am already on 360mg and its seems to have no effect anymore.
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